“I’m Starting A Gluten Free Diet. When Will I Feel Better?”

One of the more frequent questions that I see in my email runs something like this:

“I’m about to start a gluten free trial because I think it may help with some of the symptoms I’ve been suffering with for years. What I don’t know, and I don’t know who else to ask, is when I should expect to see improvements. How long should I do a trial? A couple of weeks? A couple of months?”

I don’t have a great answer to this question. I’m not a medical expert of any sort, so all I can offer is my personal experience which won’t be all that helpful unless you have a wheat allergy that manifests in your gut (in which case, I felt better in three days). What I do have is an email list of thousands of people who for one reason or another are interested in a gluten free diet. So, I’m going to throw this question out to all of you. I’m sure that collectively we can answer this question.

So, if you’d like to help this person (and many others) out, add a comment to this post describing your symptoms, your diagnosis (if you have one) and how long it took you to see relief of your symptoms. I’d love to get a ton of answers from all of you and then compile it into one post, or a small free e-booklet full of anecdotal evidence of a gluten free (or gluten-free plus) diet making you feel better.


Comments

  1. I felt better within days – my throat has for years felt hot and swollen. After just a few days gluten-free, my throat felt the most normal it has in more than four years. I no longer feel the need to “shovel” ice cream or ice cubes to hold at the back of my throat. I can speak more clearly now, not choking on my tonsils!

    I’ve also lost the constant feeling of nausea.

    It’s only been two weeks GF for me, but I did have those vivid dreams in the beginning others wrote about. They’re gone now, and while I’m not sleeping any better yet, I am more awake than before.

    • Kristin says:

      Janice-

      You are the only other person I have ever read about that had the two main symptoms I did, the throat issue which I described as an empty hollow feeling like I always needed to eat something and the nausea, oh the nausea is so debilitating. My throat feeling took a good four months to go away and if I get glutened it comes back along with the nausea immediately! Wow I am just in awe to find someone with my two main symptoms also!

      • I too suffered with my throat, whenever I told my GP they said it was fine. Nice to know others have similiar symtons. The GP said the aches and pains were not linked either but I beg to differ.

        • Aches & pains! I know the feeling. If I eat gluten, two weeks later my knee and hand ache terribly. If I go off gluten, two weeks later I am pain free in those joints. The arthritis shows up on Xrays. But it only hurts if I eat gluten.

        • aches and pains ok I have Cerebral palsy as well as being allergic to wheat, oats, rye, barley, soy, eggs
          I was told it was the cp. Well crabie biscuts!! I really felt like some one didn’t like me. The first thing I realized about the whole mess is I could swallow. I wasn’t getting head aches. This took about a week or less I think. I started feeling like I could actually handle the aches and pains they went to a dull throb insted of a debilitating roar. Now the only hard thing about being Gfree is the glutien is every where in everything. I was using this tooth paste and my gums swelled up “freak out!” I went on this website and did some reading toothpaste has glutien in it, HEB puts out a “Glutein free” pasta it is not glutein free it is made in the same facility as the regular pastas and breads! I hear that some people get better and than get all kinds of problems later. Like thyroid problems, One gal I know actually went blind I really dont think I has to do with the gluten/gfree though I think in her case she is allergic to her own house.

  2. Moebird says:

    I have not been tested for celiac disease, but my room mate was diagnosed about 9 months ago. I’m mostly gluten free, mostly because he keeps telling me that many of my fibromyalgia symptoms are caused by gluten. I also have another heriditary disease, much like MS, and suffer from painful cramps in my legs as well as much pain, stiffness, headaches, etc. on the right side of my body. I haven’t been very diligent because I didn’t really believe that gluten could be causing so many problems for me, but after reading these posts, I’m willing to give it a better try – so here goes. I’m leaving on a cruise early tomorrow morning, so sure hope I’m able to stay gluten free on the boat!

  3. Deborah says:

    One thing I can add that I havent seen on this link is that my daughters doctor (D.O.) had her do the ALCAT blood test which shows 200 food intolerances ad the range from ok, mild moderate and severe. They also show the range if you have candida, gluten intolerance, gliaden intolerance, and casin and whey intolerance. It has been incredibly useful, because she had many intolerances, and although the gluten is the biggest offender, the avoidance of the other food that we now know bother her helps in healing her gut. She was put on pro and prebiotics as well as something to heal her leaky gut. With ALCAT, you can also test chemicals and other things. Insurance does not cover, but it has been invaluable. My daughter (13) has had great success, although she has adrenal fatigue, no doubt as her body has been in distress for so many years. That has improved, but not enough, so we are going to be giving her some suppliments to address that. Look at Dr James wilsons website for info if that is you too. We tried NAET wth our chiro for 3 years before we found these tests, and had some improvement, but then bam, she went down hill again. This diet of 2 has been helping her feel better. It is hard and still relatively new to us (3 months). ALL medical docs over the 13 years she has been ill, said she is fine and all in her head. OOHHH such idiots!

    • I too had the Alcat test done, and that is what I am referring to in my post. Why wonder what other foods and chemicals are causing you grief? Get tested and know for sure. I wish insurance would cover the cost of the blood work. It should because it is definitely medically related testing. The money for all the tests and ER visits I had last year totaled about $30,000, plus one ambulance ride to the hospital when I couldn’t even stand up. The room was spinning. The Alcat test cost approximately $400, and I hear that the cost has gone up to over $500. That is too bad because it eliminates other people from having the testing done. It still is cheaper than the $30,000 it cost for all the tests and ER visits. Those tests did rule out more serious problems, so that was good. Insurance paid for most of my other costs.

      Why don’t G.I. doctors consider food allergies when patients complain of digestive issues? My G.I. doctor never suggested it, even after all the other tests ruled out the usual suspects. If she would have recommended the blood test, then I would think insurance would have paid for it. Her choice of treatment for me was antibiotics, which I took for three episodes. They helped, but as soon as I quit the ten-day regimen, the pain came back and I was at square one. Here, I was eating wheat all day at every meal. Gluten is in so many foods. Without gluten, I have no digestive issues and life is good! For me, the results of not eating gluten were immediate. No cramping and nausea.

      • I have a quick question: where does one get ALCAT testing done?
        I discovered I was not digesting gluten OR dairy well through EDS testing at my chiropractor/natural health care provider’s office. Within a couple of weeks, most of my inflammation and skin issues have gone down, but I am still having some digestive issues, and I’m still searching for more answers.

        • Liz,
          I dont know where you live but if you visit ALCAT.com there is an place in website to locate doctors who can order it by geographic location. If you dont see anyone in your area, then maybe call the ALCAT lab and see what they suggest. They are located in South Florida. I went from my doctor over to the lab for the bloodwork, as I live in the area, which I am guessing that is how my doc knows about ALCAT, as they are nearby. Its so worth it. My daughter and mother both had unresolved severe digestive problems (and other weirdness that has since disappeared). No matter what we tried and believe me, we tried thousands of dollars worth of holistic treatments (NAET) and med doc visits, and this is the first surefire thing that has helped, as it is through the blood. Also, the doc found out through a saliva test very specifically that my daughter has adrenal fatigue. She sleeps the wrong parts of day and night as her adrenals are running high at night, so she is tired all day. Also adrenals are fatigued rom nutritional depletion. I feel that for once in the 14 years we have been visiting docs, we finally found what is the problem and how to fix. She is doing so much better even at this early stage of treatment, which is basically a specific diet based on ALCAT and digestive enzymes. Good luck!

    • Emily Davis says:

      I encourage everyone who has problems with gluten to have the ALCAT test done.

      It is expensive, but it’s well worth the money in terms of your health.

      I just got my results back and found that MOST of what I’d been eating – since being diagnosed with gluten intolerance – I’m also allergic to as well! These were foods that are normally considered ‘good’ foods, like green beans and mushrooms, and many more! Had I not had the ALCAT done, I’d still be putting the wrong foods into my body… Now I know exactly what not to eat, and already (2 days) I can feel a difference in my body!

      • I have had this done it is fairly harmless I got a whole run down of all I am allergic to which honestly if I tell you my fingers will fall off from typing before I finish the list. I cut it all out. Well honestly I have ever heard of pig weed until I got the test done. Its just a blood test any way.

  4. Being gluten free is sure easy at home, not so much when traveling. We just arrived home after visiting northern Wisconsin where no restaurant offered gluten free food. I ate salads and hoped the dressing was okay. I carry enzymes with me that help if you eat gluten accidently. There are several brands that work. I bought them at Vitamin Cottage. I felt good the entire trip with the help of the enzymes.

    I am a firm believer in blood testing for food triggers. If you are sensitive to gluten, you are probably sensitive to other foods, and there is no way to know for sure what those foods are without blood testing. I have read that skin testing doesn’t work as well as blood tests do. Insurance didn’t cover the test, and I paid cash (approximately $400), but now I know that other foods cause problems also. Those things are sweet potatoes, kiwi, green beans, plus other items that I would have never guessed were causing me problems. Blood testing also tests for chemicals so you know what chemicals you should stay away from like chlorine, fluoride, sulfites (in wine), aspartame, etc. Why just cut gluten out of your diet when there are so many other things that could be adding to your problem? Once you know, you can avoid all of those items and feel great. Believe me, it works wonders.

    I visited the ER 6 times last year and got no help from the regular medical doctors that I visited. Tests ruled out serious problems, and not one doctor suggested blood testing for food triggers. I think you have to visit alternative doctors: chiropractors, nutritionists, osteopaths, etc. for advice.

    I am doing well (no celiac) and feel fortunate to have found out what foods I am sensitive to. I am almost 70 years old and have never had a food allergy in my life until last year, so that means at any point in your life your system can change, and food that you used to eat can start to cause problems. I was very surprised, but glad to know that my problem was not caused by something more serious. Testing was scary. You read about all the digestive problems that people have, and I didn’t want to have any of those problems. Changing my diet and avoiding the chemicals on my list made all my problems disappear.

    • Eating out is the worst. My daughter recently asked at a restaurant if they had anything gluten free or a menu. The waitress said “Just a minute, I’ll ask” She came back with we don’t have anything, everything has salt in it! I think it’s the chefs and waitresses that have no clue what gluten is and what it could be in and the cross contamination. She’s decided a camper will be the best thing to travel in, she can cook her own meals and not suffer the gluten hangover with a total face breakout.

      • Emily Davis says:

        Your daughter is right about restaurants; eating out is risky business!

        I’ve had good luck with the following method of dealing with restaurant eating: I created – on the computer – small, business-card-size message/s addressed directly to the restaurant chef.

        The message says that I am allergic to wheat, rye, barley, and corn.

        I cut the messages apart, and went to Wal-Mart and purchased a mini-stapler. Now, at all times, I have in my purse my messages and my mini-stapler.

        Now, when I eat at a restaurant, I ask the wait-person if I can staple one of my messages to my order ticket.

        I’ve never had a wait-person to refuse, and since I’ve started doing this, I’ve found that the restaurant staff – no matter where I’m eating – are invaribly helpful and really take care in seeing that my meal is gluten free.

        If you make some cards for yourself, make sure NOT to say you are ‘gluten intolerant’.

        Most regular wait staff do not have a clue what gluten is! So – if you put you are allergic to wheat, rye, barley, and corn – they understand ‘allergic to’ and they are most helpful.

        Then, I always leave a big tip, because they’ve gone out of their way to make my meal ‘safe’ and I do appreciate it!

  5. Emily Davis says:

    Several people have mentioned a product that can be taken if one is accidently ‘glutonized’ when eating out. Could someone reply with what exactly this product is?

    I am planning a trip to Japan, and I would like to take this product with me, as I understand that being gluten-free in Japan is even more difficult than eating out in the US.

    Any help will be appreciated! Thanks a bunch!

    • Hi Emily:

      I bought Gluten Ease by Enzymedica (www.enzymedica.com) at Vitamin Cottage here in Colorado. It is for gluten and casein digestion. I felt a cramp coming on last week after eating in a restaurant, took one or two capsules and the pain stopped. I carry it in my purse and feel more at ease when eating out now. I still order only gluten free items off the menu, but one never knows if it truly is gluten free. I purchased the enzyme capsules after attending a seminar on celiac where the nutritionist recommended them. There are several types that work, so she said.

    • I don’t know if you’ve already gone on your trip to Japan or not but my son and I just came back from a two week trip. I speak and read Japanese fluently and I lived there for close to 10 years so I thought staying gluten-free in a country with a rice-based diet would be easy. Wrong!
      First of all there is wheat in soy sauce, and there is soy sauce in most sauces, soups and dressings in Japan. Most noodles, unless it clearly states rice or buckwheat, are made from wheat flours.
      My biggest surprise came when reading the labels for rice crackers; most contain some wheat.
      The good news? Japan is slowly becoming aware of food and environmental allergies due to one of the highest rates of eczema in the world. It’s so bad there that people who suffer from it can literally be purple from the scarring.
      Stay away from all “soft cream” ice creams, rice crackers, noodles and sadly, mochi treats. Mochi ice cream and mochi filled with red bean can contain wheat.
      I saw some allergy labels and warnings (in Japanese of course) and menus at “Family Restaurants” like Denny’s and Gusto that listed allergy warnings.
      There is no effort made to reduce cross contamination and if you try to ask about “gluten” in English you will get no where. If you have a friend who speaks Japanese maybe they can make some flashcards for you that you can show to people in shops and restaurants asking about gluten. Keep it simple though and ask about wheat flour and the main ingredients like barley, rye and oats. The good news is they barely use oats or rye but the bad news is that barley or wheat show up in just about everything.
      MOS Burgers offers rice burgers which are really yummy. They use rice shaped into patties instead of bread.
      Tempura is coated in bread crumbs, teriyaki is soy sauce based, ramen are wheat noodles and pasta abounds. Salads are few and meat cooked without soy sauce or bread crumbs are hard to find. Try supermarkets. they have prepared food sections and the fruit in Japan is some of the best in the world!
      All is not lost.

    • Really? Stick to the rice and vegitable dishes and dont use soy sauce. Gfree.

  6. I Have suffered for years with nasal congestion and post nasal drip. this has caused bad breath and therefor embarrasment. several visits to the doctors have not helped. i have since discovered that the congestion is exagerated by certain foods such as wheat, dairy products, meats, etc. i have just started on gluten free diet even though not completely. i am still learning about the foods and acquianting myself with the recipes. it is a whole new experience for me. i must say though that there is a reduction in the congestion and the severity of the post nasal drip. i am particular with oral hygiene and i am greatly sad that i seem to fail to alleviate whatever the root cause is. i am certain that the problem is related to the nasal and throat congestion and the mucus in this areas. the mucus is definitely abnormal as it is unnaturally thick andd feeling as if there are strands. there is a lot of this and it is throughout the entire day. i use saline water daily without much difference. please assist. my profession and social life is definitely affected. doctors have failed to diagnose and determine the root problem.

    • Joy,
      I dont know the answer, but I have found answers to problems that medical doctors dont know through doctors who lean more toward a more holistic approach. Through a chiropractor it is possible to get good recommendations. Food always seems to effect everything else, so I might start there. Good luck and dont give up, keep asking questions until you find your answers.

    • Joy,
      I also suffer from post-nasal drip and bad breath with an unexplainable root cause. i also get diarrhea after almost every meal and suffer from eczema on my face and acne on my body. i recently learned that these symptoms could indicate gluten resistance, so i’m trying to eat gluten free too! have any good recipes? :P do you all get tired easily? for years my doctor thought that my lethargy was caused by an iron deficiency, but the iron pills don’t help.

      • Rebecca says:

        Julia,

        I have been pretty consistently tired for about two years. I can take 3 hour naps during the day and still sleep at night. Is this the same thing that has happened to you? It was also blamed on a severe iron deficiency but once my Hemoglobin and Hematocrit levels were normal for iron, and my ferritin (stored iron) continued to be low while taking iron supplements my doctor did more testing. I was diagnosed with Celiac disease three weeks ago. I haven’t noticed a drastic change in symptoms yet, although now I can go to bed at 11 instead of 9. I’m looking forward to the day of no more naps. Hope that helps!
        -Rebecca

        • Hi Rebecca:

          Me too. I have the same symptoms as you. I need to make some serious lifestyle changes. Scared to death. I am also diabetic, brittle one. Uhh. doesnt seem so bad. Just wana be health. Hopefully I can loose weight too.

      • Julia, if you will google “gluten free blogs” you should come up with more recipes than you can try in a lifetime. I would start with “Gluten Free Girl” and Karina’s Kitchen (gluten free goddess). Stay away from all things with wheat in and your post nasal drip should disappear. Give it a good try, start with a three week trial I would think. Be serious about it, don’t cheat!

    • Joy, I found that cutting refined sugars out of my diet greatly reduced mucous production. Also cutting out dairy may be helpful as well. I seemed to have experienced this symptom as well a few weeks after I became gluten intolerant, but taking zyrtec seemed to knock out the symptoms, so it may have just been seasonal allergies occurring while I was having gluten symptoms, but I wanted to mention it in case it could help you.

    • try to eliminate dairy my dd had the same issue we eliminated it and it is gone.

      hope this helps

    • You might also want to try reducing the number of artificially-scented products you use. I had perpetual sniffles for several years until I tried scent-free laundry detergent, dryer sheets, and deodorant…they helped a lot.

  7. If you think you have allergies and want to know from testing, it is best to test before you go ona gluten-free diet. This way, any antibodies or other proteins or reactives your body produces in response to wheat/gluten will be present at the time of testing. However, if you don’t feel you need this testing to assure yourself of your condition/allergy, just continue the diet and if you are relieved of the symptoms, you’ve accomplished your goal. I am a self-diagnosed Celiac (not a Type I allergy, it’s a delayed-onset immune response associated with antibody production against wheat/gluten protein). If I want to take the basic test to see if I am for sure Celiac (production of antibodies against wheat/gluten proteins) I need to do a test that asks you to eat the equivalent of 1-5 pieces of bread over a period of 5 weeks. I konw what this will do to me, so I opt out and am content with having my symptoms resolved.

    My main symptoms were fatigue, light-headedness (assoc.with anemia), nausea, itchy red spots on certain areas (inside elbows, behind knees), a churning/burning/gurbling in my stomach, pain in my liver area, constipation and pain and apparent welling in my entire ureto-digestive tract.

    When I saw a doctor about it, they gave me a general blood panel test, found only my red blood cell count was low and gave me antibiotics and a topical steroidal skin cream. None of this helped and I felt worse. I actually looked on-line for guidance, much like a site such as this and found some of my symptoms shared by someone with milk allergies. I did an exclusion diet of all dairy products and felt better for 1 week. After that, I felt excrutiatingly worse. I could not sleep, the pain was so bad in my stomach and associated areas that it kept me from wanting to complete even simple daily tasks. I read more, and would be quite upset if I had an allergyto wheat. I did an exclusion diet of all grains (but consumed corn, potatoes, rice) and felt much better. I then began trying to include other non-wheat grains. I made myself a wonderful loaf of wheat-free rye bread and almost keeled over, the pain much worse than wheat by itself. For years I would eat oatmeal almost daily. I found I could no longer do this. I’ve tried teff and quinoa, and they both result in symptoms such as pain and constipation. However, everyone reacts to the allergy differently, we’ll make different antibodies, so you might be able to enjoy these foods.

    To answer, how long will it take to feel better?

    I feel bad within 2 hours if I eat something “wrong.” At the beginning, the pain relief is quite fast, within 3 days to a week. If I eat something now with modified food starch such as a gravy that is in prepared foods/soups/almost everything (oftentimes contains wheat), I will feel the affects for 1 week (mainly pain for up to 2 days, constipation the remainder). However, it also depends on your condition and how long you’ve had it. If it’s a basic allergic response such as closing airways, you should be relieved of symptoms if you avoid the culprit foods. But if you had Celiac for say 10 years, you can have problems such as anemia and osteoprosis due to the inability of your digestive lining to absorb nutrients. I was a vegan prior to Celiac self-diagnisis and ate many imitation meat products which are extremely high in nutritious gluten. I completed a Dietetics degree and would not advise a vegan diet, especially if wheat and/or dairy or other foods groups are in exclusion. Eat the recommended amount of protein daily and please see a doctor for blood panel tests, especially for RBC count and possible damage/over-working of the liver (amino alanine tranferase ALT/AGT). Also, look into a multivitamin with iron and a Calcium/Vit D supplement. But of course, ask your doctor first.

    Due to my condition (Celiac), I was slightly anemic with signs of loss of bone denity (osteopenia). I felt a major change in my body (stronger/more tissue/faster healing), I would say after 6 months. But this is due to my body not absorbing nutrients it needed so long and not giving my body adequate peotein. However, I still get somewhat dizzy sometimes and oftentimes feel a constant hunger, even right after eating.

    Overall, if your symptoms improve with diet, stick with it and make sure you give your body adequate nutrition. You probably don’t need a test to tell you that you feel better. A doctor never once suggested food allergies as a culprit of my symptoms.

    Good luck

  8. LadyAcquarius says:

    Wow, I thought I had the weirdest symptoms, and now reading here, I know what it is. I did not get tested for food allergies, but when I started gluten free, I did feel better in 3 days, through and stomach. And now I feel better knowing that I wasn’t making this up, or that I wasn’t imagining it. I barely started, so I’m still learning what foods to eat, and I do feel the difference when I slip. The only ting is I really don’t like to cook, so I need quick easy recipes. So far I mostly eat chicken and fish with veggies. I can’t do fruits for now because my blood levels are so high. If anyone knows of sites that offer simple recipes and no fruits, I’d appreciate the suggestions.

  9. LadyAcquarius says:

    Wow, I thought I had the weirdest symptoms, and now reading here, I know what it is. I did not get tested for food allergies, but when I started gluten free, I did feel better in 3 days, throat and stomach. And now I feel better knowing that I wasn’t making this up, or that I wasn’t imagining it. I barely started on the diet, so I’m still learning what foods to eat, and I do feel the difference when I slip. The only thing is I really don’t like to cook, so I need quick easy recipes. So far I mostly eat chicken and fish with veggies. I can’t do fruits for now because my blood sugar levels are so high. If anyone knows of sites that offer simple recipes and no fruits, I’d appreciate the suggestions.

  10. christina says:

    Thank you for all of the wonderful advice. I have IBS but the bloating is really freaking me out! It can ruin a great time fast. I have 3 kids to keep up with so I have to try and get this under control. I’m going to try the gluten free diet. Wish me luck : )

  11. marjean says:

    I was diagnosed w/ celiac a few months ago, and it explains alot of things that have went on w/ my body for years. Usually milk, (and milk chocolate), doesnt bother me, but I bought a different brand milk, and have been extremely nauseated. Thinking it couldnt possibly be the milk(“Isnt MILK milk?”)..i have stayed off of it for a day and already feel alot better. What I want to know is can I suddenly become lactose intolerant, too, or was it just that I changed brand of milk? I have stayed on the gluten free diet w/ everything else, but I still have bloating and constipation. Any suggestions?

    • Kristin says:

      Yes…many celiac’s also have an issue with dairy/caesin. The first part of your intestines to get damaged is the villi which breakdown dairy/caesin. If I get too much dairy my symtoms start to come back. I would avoid dairy until you get your intestines healed.

    • Roy Heath says:

      I attended a seminar given by local doctor about gluten. The doctor listed 3 additional antagonists : milk, soy, and corn. So a person can experiment with their body by removing soy, corn and milk for awhile and then reintroduce and note the effects. I had been gluten free for years but still had loose bowels until I healed my gut by drinking kiefer water.

  12. I have had food allergies/sensitivities to certain fruits, vegetables and soy for years, but I began the gluten free diet a couple of months ago and when I accidentally ate hidden gluten in a food could really tell the difference, but I still had so many symptoms! So from reading your posts, went on the Internet to check out casein and have also now stopped all dairy. The stomach aches and diarrhea are gone. I’m not as lethargic, but there either is still something else that I’ve not fixed yet, or it’s going to take a long-time to heal my body of a long-time problem.
    Does anybody else have a tongue that looks like a topographical map from the US Geological Survey?

    • The tongue thing is probably geographic tongue. It is usually a response to acidic foods like pineapple, oranges and tomatoes. It fairly common and considered normal in the dental/pathology dept!

  13. Tiffany B says:

    Hello,

    I have not officially been diagnosed with anything yet. I was getting tested for IBS when I ran out of money. The GI doctor supposidly ruled everything else out. My husband and I started a workout program called P90X and changed our diet to fit the program, and that is when I really started noticing my gut. I have gained some serious ab muscles, but you cannot tell because I still look like I’m 4 months pregnant. Someone had mentioned Celiacs but I don’t have insurance to get tested.

    I have conviced my husband to start a gluten-free diet with me for a few months to see if that helps. I have also been unexplicabley tired. It seems to be getting worse and worse when I thought working out would make me feel better. I also developed lactose intolrance when I reached adulthood so we have switched to lactade brand milk. I don’t drink milk much anymore and have since only used it in cereal when I have it once ina blue moon.

    I want to thank everyone here for listing their information and symptoms here and look forward to starting the diet next week (as we have already gone grocery shopping for this week).

    Thank you all,
    Tiffany

    • I live off of almond milk and coconut milk silk puts out good products try those instead of the lactade I could not tolerate it at all and the tired feeling everyone is talking about went away when I changed.

  14. Pam Johnson says:

    I have celiacs disease and the doctor believes it may be refractionary, which means my diet hasn’t helped like it should. I have been on the diet for two years. When the doctor first diagnosed me,he said I should be better after three to six months. Unfortunately, it didn’t. That was the start of the doctors testing to help determine this additional diagnosis. I was 55 years old when they finally diagnosed me. I had since symptoms since childhood.

  15. I had really strange symptoms for years until a chiropractor helped me to come to grips with the gluten sensitivity. I would get sores on my body, inside my nose and mouth, and in the rectal area. I also suffered from chronic loose bowels and stomach pain. Also itchy rashes on my body. I find if I avoid wheat completely, I also am much less depressed than I used to be.
    Recently, my husband had been suffering from severe and frequent headaches and sinus problems, and thess symptoms turned into bronchitis a couple of times. We have also taken him off of gluten. It has had amazing results for him. He is doing great and hasn’t complained at all about headaches or sinus problems for several weeks.
    We still are able to eat oats,but we are doing great on a very low gluten diet!

  16. Judy Naef says:

    A researcher I have ben working with wants me to try a gluten free diet. He feels, from looking at some of my test results(endoscopy, etc), that I have a gluten issue and should at least TRY the diet. My husband and I went shopping and spent a fortune on almost nothing! I am not having issues with things that state yjey are gluten free but what about my meds like Viactive, One A Day vitamins, toothpaste and the things on packages that i don’t even know how to pronounce?? I bought some gluten free bread and those groceries…pasta, crackers, chips, but am SO confused about getting good nutrition and doing this correctly. Where does one start with this diet??? I have sLupus, Sjogren, Arthris and a VERY messed up GI. I am raw when I don’t eat but sick as a dog if I DO eat…just can’t win! My tongue burns like fire constantly and has since 2003! My GI took biopsies from an endoscopy in 2005 and insists I have no problem with gluten and do not need to be on this diet. My Lactose intolerence test came out so high, it went off the charts much sooner than it should have. My researcher says I should see a naturalist doc, he gave me a name and wants me to start the diet. Again, I am clueless with the things with the list of ingredients and not the things clearly stated gluten free. I am SO SICK, bloated always have a stomach ache and need help! Can someone guide me as to how to start this diet until I can get in to see the doc, who is very booked up? Thank you so much!
    Judy

    • Judy, please do see a naturopathic doctor or someone in the holistic field to get you started. With your multiple problems you need guidance. I would imagine they’d start you with a cleanse of some sort to rest your system. Then probably add foods back very gradually as you see what works and doesn’t work.

      My symptoms weren’t exactly like yours, but a plan like the one above has put me back to a somewhat normal life now, and it is so worth it!

    • JudyNaef says:

      Joey, I had my appointment with the doc and he took tests. The gluten test came back with high numbers and he said I have a severe problem with gluten. I am waiting for one more test to come back for something else and then we are meeting to talk about my problems and make a plan. I am going shopping this week with a friend who has 2 kids with Celiac and she will help me shop. I look forward to my meeting with the doc to know the whole story.

    • The answer is glutein is a bonding agent. 90% of all pills have it. Be it vitamins or antibiotics. Try liquid medications or like me back it with benidryl the liquid childrens version. also toothpaste and other things that we would not even expect. There are natral toothpasts on the market one of them is called “uncle Toms” natural toothpaste.

  17. Judy Naef says:

    Unfortunately, the tongue burns day and night no matter what i eat…8<(

    • Glad to be of help. Hope you get relief soon!

      I found a new toothpaste that is helpful.
      It burns much less than other toothpastes for me.
      It’s Organique, manufactured by Himalya Drug Company of India. It’s gluten free, flouride free, saccharin free, sodium lauryl free, with no animal testing. I found it at Vitamin Cottage and have also seen it at Sprouts in the Dallas, Texas area.

  18. Judy Naef says:

    I have one for Monday, Joey. Thank you so much!

  19. Judy Naef says:

    Is olive oil and veg oil gluten free? Also, what do you guys do about toothpaste, lipstick, etc? I was told some ingredients are like eating gluten even if that word isn’t used and it is supposed to be gluten free.

  20. I started a gluten free diet at the advice of my sister-in-law (who has multiple health issues). I am not celiac, but since i have been gluten free i no longer suffer from arthritis pain in my hips! i used to ache pretty bad every night, now i have NO pain! i also suffer from Restless Leg Disease and it has helped with that. i take iron twice a day for the RLD and being gluten free sure helps. Iron can really bind you up and i have no problems.

  21. I was diagnosed with fibroymyalgia–severe pain and exhaustion–in 2003. My partner and I tried different things–eliminated processed sugar, tried protein shakes daily–that resolved a great deal of the pain, but never the exhaustion. Then I developed hip pains that would not go away no matter what I did. My father was tested for food allergies and intolerances about a year and a half after I developed this debilitating hip pain, and came up extremely sensitive to gluten. He called me and recommended I eliminate gluten from my diet (no health insurance at the time, and couldn’t afford the testing). I talked it over with my partner and we gave it a shot. It took me about three weeks to notice much of a difference–I don’t know whether the time was because of the severity or my insane 10-hours-a-day, six or seven days a week work schedule.

    But about three weeks later much of my exhaustion and my hip pain went away. Other symptoms that I hadn’t even noticed or relegated to the back of my mind–stomach swelling, PMS, itching, and postnasal drip–all improved over time. I still remember my first cramp-free cycle. It was wonderful! Now if I get something that has even a tiny bit of gluten, my pain and exhaustion do come back almost immediately. People ask me how hard it is to eat this way. It takes time, knowledge, and dedication, but it’s sooooooo much better than living gluten-full!

  22. I have had bad acne for ever since puberty (I’m almost 30). And by bad I mean cysts, that are so painful around the mouth that I couldn’t smile. My stomach would be so bloated after I ate bread, and would bubble away. It would be so painful to touch and really swollen and angry.

    2 years ago, while travelling, I hardly at gluten because it was expensive to have pasta and bread, so I pretty much lived off fruit and vegetables. My skin cleared up 100%, but I didn’t realise it was because of the gluten. My friend is a nutrionist and told me 3 weeks ago about celic disease and how it may be linked to my autoimmune disease. I stopped eating gluten 2 weeks ago, and I lost 4 kg and it was so nice to finally feel ‘light’ and alive (not sluggish and tired). My skin has improved tremendously (no new pimples).

    ps: last night I ate a whole dish of pasta, and today I couldn’t feel worse (symptoms as mentioned above). I’m fully convinced about this gluten thing, and I will endeavour to stick to a gluten-free diet forever now.

  23. I was diagnosed as gluten intolerant. Since that time about 4 months ago I went completely gluten free. My main symptom was diarrhea. Sometimes at the most inconvenient times!!! Anyway… over the last 3 weeks. I ate chocolate cake a hot dog on a regular bun and cheese it snack crackers. I had no symptoms. This makes no sense to me. Can anyone explain it. I thought once I went gluten free if I touched anything with it in it I would react more violently then I had before. But those 3 foods seemed to do nothing to me.

    • Everyone seems to react differently. Personally, my arthritis reacts to gluten but it takes 2 weeks to build up in my system and 2 weeks to work out of my system. Small amounts don’t seem to affect me the way it used to eating wheat all the time.

  24. Roy Heath says:

    Interesting, I had some taquitos that list gluten as a component and had what I refer to as a mild reaction in which I have some nasal congestion. In my worst case, I have cold-like symptoms that lead to an all-out cold or flu … down for weeks. I doubt that you ate something that contained faulty gluten, but if you did then you could make a fortune if you could isolate the wheat strain. My bet is that it will catch up with you. Otherwise, you may be gluten intolerant with something else triggering diarrhea. Milk, corn, and soy are often considered antagonists when dealing with gluten intolerance. Maybe you also like to play russian roulette. I have also had corn pops cereal that lists wheat starch with minimal reaction, but there is still a detectable change in my internal systems albeit mostly nasal.

  25. for Lisa: I can’t find your original post so am recopying it here. Maybe I need lessons on blogs?
    Author: Lisa
    Comment:
    I was diagnosed as gluten intolerant. Since that time about 4 months ago I went completely gluten free. My main symptom was diarrhea. Sometimes at the most inconvenient times!!! Anyway… over the last 3 weeks. I ate chocolate cake a hot dog on a regular bun and cheese it snack crackers. I had no symptoms. This makes no sense to me. Can anyone explain it. I thought once I went gluten free if I touched anything with it in it I would react more violently then I had before. But those 3 foods seemed to do nothing to me.

    Lisa, this is my theory–never heard it from anyone official. I don’t have celiac (did the biopsy). I’m thinking that 2 years of GF has healed my system enough that I can handle some gluten, which may be what you did. I find that if I do too much for too long though, I’m in trouble. Just some “food for thought”

    • A continuation of the post above….it “seemed” I could do some gluten, but it didn’t last long. I ended up in the hospital about 6 weeks after the post, with ischemic colitis. Doctors don’t attribute it to the added gluten, but I do…..it’s the only thing I did differently, and the whole ordeal was awful…..I will NOT do that again………word of warning to others!

  26. Sharon H says:

    I was diagnosed 20 yrs ago with ulcerative colitis. This past summer I kept getting worse and my doctor was trying strange medicines. (Humeria for one) Well I asked my doctor why aren’t these medicines working anymore? I had been on Asacol and sometimes Prednisone. He never could give me a reason. I also asked about my diet and he said “watch what you eat.” In December as I was worse (diarrhea 8 times a day) he said well I think you should go see a surgeon, that will cure you. I decided it was time for a new doctor (and this was doctor number 3) I went to a holistic doctor.
    After giving me a physical she said you need to cut out gluten. It took about 4 months before I felt better. Now if I slip and eat something with gluten it takes from 2-4 weeks before I’m back to normal. I get the same symptoms – diarrhea, fatigue, grumbling gut and cramps.

  27. I have been gluten free now for almost a year, and I can’t believe what an incredible difference it has made in my life.

    When I was 15, I was having severe psychological issues that could not be explained or resolved. I suffered from anxiety attacks, feelings of worthlessness, and I was also dealing with disordered eating habits. I would starve myself, not because I was feeling fat or wanting to lose weight, but because I got so sick when I ate ANYTHING. There was no rhyme or reason to it. I was angry, upset and frustrated.

    When I talked to my doctor about it, he prescribed Effexor (an anti-depressant/anxiety drug) and sent me away with that. I stopped taking the drug after 2 weeks due to my mother’s insistence that that wasn’t what I needed.

    I went to a body talk practitioner and began working with her when I was 17. She advised me to try the gluten free diet, and I have never gone back.

    Initially, I would slip up and gluten out every once in a while. But within the first week I already felt better, brighter and less sick. I had an appetite for fresh, healthy food.

    After a few months of being mostly gluten-free, my anger and anxiety started to dissipate.

    I am now 19 years old and do not have any of those same psychological issues, nor do I ever feel sick after eating. I am 100% gluten free now, and would never even think of reintroducing it into my life or my kitchen.

  28. I’m gluten intolerant and have been cooking gluten free since Feb of 2000. I just love this site, keep it up. thanks!

  29. kitINstLOUIS says:

    The first symptom bad enough to get me to see a doctor was marked cognitive impairment that came on very quickly. For the next thirteen years, while trying to chase that down, I became severely fatigued, had fibromyalgia, anxiety, insomnia, depression, and, eventually, chronic diarrhea that became so severe and unpredictable, I couldn’t leave the house for more than a couple of hours without having an “accident.” Doctors had me pegged as a chronic fatigue patient and quit trying to help me diagnose my problem until I quit telling new docs about that “diagnosis.” The quotation marks are because chronic fatigue syndrome is a diagnosis of exclusion, and obviously, my real problem was not excluded.

    Once I was diagnosed by my GI’s physician’s assistant (he didn’t know squat about CD) the diarrhea stopped within 36 hours of going gluten-free. The cognitive problems have eased but will likely never go totally away, I’ve been gluten free for 9 years and my intestines, my follow-up endoscopy showed, have completely healed. The fibromyalgia is much less severe, although I still have my moments. I’m able to sleep now, and my anxiety is much more manageable. My problem is that the nerve damage caused by celiac disease can only improve a small amount; nerve damage just doesn’t typically heal that well unless you’ve only had symptoms for a short period.

    My energy isn’t great, I’m at about 50% of what I was before I got ill. But I had been at about 5% for a really long time, so this is quite a wonderful improvement. Although I’m not able to work full time, I am fortunate to be able to pursue music and art and do creative things that I find challenging and rewarding.

    In addition to celiac disease, I have autommune thyroid diseases (Hashimoto’s and Graves’ diseases), B12 deficiency (unknown whether it is pernicious anemia or because of intestinal damage), and eczema. The autoimmune diseases/deficiencies may have been caused by not having had my celiac disease treated in a timely manner. I have to wonder whether the foot trouble (severe plantar’s fascitis) I had that took me off the retail sales floor two years prior to having cognitive symptoms.

    • I am so glad you are finding some releif..I go back in the morning to verify if I have MS along with the Hashimotos…Have much of the same you have and have had it most of my life…DIganosed with EPV when I was 21 after chronic Mono for years….Vitamin D Deficiency also……
      I was amazed how fast my brain fog lifted and I haven’t had a joint or muscle pain in a few days…I know it can come back but by gosh with this page and much more help I will heal!
      I eat all organic/ grassfed everything and I am able to raise most of my own food…..( until this year when my body went off road for a while) getting me back to growing my own is my way of healing!:) Have a great one!

  30. JudyNaef says:

    Have any of you had the saliva test to determine a gluten issue?

  31. Hi there… I went GF this last Saturday, I was in the hospital for some test and so I know I was subjected to it a bit there. It is Wed and I am feeling better and my brain fog is gone…I know it may not last but every meal I have fixed has been GF . My lymph glands in my neck swell when I am now exposed to gluten we have found this out just from the hospital stay:)
    They think I have Hashimoto’s and or MS so this page has already helped me huge! Thank you all for sharing , you help more conditions than you will ever know! I will keep up with how I feel if exposed to gluten again……and btw I have noticed my blood sugars go up by 20 points when I eat even a small bit of gluten:) JUST and fyi
    Blessed healing to you all
    Janet

  32. Are any of you on a dairy free diet as well as a gluten free diet? I am just starting and soooooo lost! Have to go shopping and read everything. I will miss my cheese…..
    As far as gluten, do any of you women wear Lancome lipstick? Is it gluten free? And if so, where do you find your gluten free lipstick? Thanks so much!
    Judy

    • Yes, we have been GF, DF, and many others such as potato free, low sugar, etc. for 6 months now. Cheese is tough, but my doctor said a bit of HARD cheese (parmesian) occasionally is okay. There are some rice cheese slices that are okay in a sandwich. I make the “really good sandwich bread” that I found in this site in a breadmaker and its great. Try Toffuti brand cheese slices. We had those at DIsney and they seem to have done great research and have good tasting products. Also there is many great soy ice cream brands that is GF DF.

      My best advice is to take guided tours with a manager thru your local health food grocery stores to try and find the best products. Ask them if they can be returned if they taste bad. (whole foods is good about that, then you can try more things.) Good luck and be patient. My 14 yr old is the one with the food intolerances and she has been doing it and feeling SO much better, so its worth it.

  33. Whitney Leigh says:

    I am hoping to check out of the hospital today, I have been here since Tuesday due to my Crohn’s disease. I got diagnosed in 2004 in my small intestine, it spread to my large in 2006. I had a flare up in 2008, and the worst in 2011. It went on for months and got to the point that I did not eat a single bite of food for the entire month on November. By the time i checked into the hospital in the words of the Doc in the ER.. my colon was ” impressively swollen”. That was in May, and here I am again! I have heard that many people have cut gluten out of their diets and had much success in controlling their disease. Any stories related to gluten and Crohn’s?

  34. Hi, I have Crohns. My naturalist told me to go gluten free and I have been having an increase in diarrhea. I have no idea what i’m doing wrong

    • try cutting out the soy and milk products and make sure there is not cross contamination going on. HEB makes a “GFree” pasta that is processed in the same plant as regular pastas and breads. I was really sick. I had to look at the package CLOSLY to see in itie bitie little letters the disclammer. BUT I found it to date HEB has done no changes so I dont buy it.

  35. I have rheumatoid arthritis and have been GF/dairy free and nightshade vegetable free for 8 days. I honestly feel like a different person. The pain and swelling I have been tortured with for the past 8 months is practially non-existent. I keep thinking, “Is this really possible?”. My daughter has celiac and kept at me to try GF diet. I wish I had started sooner. I had no idea…

    • Glutien allergy intollerance runs in families I got it from my dad. I was passed down from great grandma we think.

    • Dont you find comng off all that really difficult? I am gluten,wheat,dairy and egg intolerant, have been sticking to it rigidly for the past 3 weeks and am finding my lower arms, hands, legs and feet really achy. I dont know whether its the die off period or the fact that I have been spicing up my chicken etc with spices and eating a few more potatoes and bulking up mysalad with red pepper.

  36. I was having digestive issues for over a year and some side pains in my right side. The doctor didn’t know what the problem was, so I did some research and thought gluten might be the culprit. After just two days of eating gluten-free, I felt WAY better and I will never go back to eating gluten. And yes, I have found eating out at restaurants to be the hardest part of the GF diet so far. Very nice article!

  37. I WAS TOLD I HAD HYPOTHYROIDISM,IN APRIL. HOWEVER, MY THROID WAS VERY ENLARGED MY ANTIBODIES WERE IN THE 1000 RANGE, AND MY TSH WAS AT 30. I WAS SENT TO AN ENDO WHO DIAGNOSED ME WITH HASHIS IN JULY. I HAD GOOD DAYS AND BAD,MOSTLY BAD.HEADACHES, AN DIZZINESS FOR 2 WEEKS STRAIGHT, CRYING ALL THE TIME. MY TSH GOING UP AND DOWN. MY POOR HUSBAND I WAS DRIVING HIM CRAZY THROUGH THIS. ANYWAY ON AUGUST 7TH I SAID I AM GOING TO TRY THIS GLUTEN FREE STUFF. I WAS DESPARATE REALY, AND I HAVE TO SAY IT HAS BEEN 1 MONTH I FEEL SO MUCH BETTER I CANNOT BEGIN TO TELL YOU. I HAVE NOT HAD ANY EPISODES WHICH IS GREAT. I AM ABOUT 75% GLUTEN FREE, AND I TAKE A PROBIOTIC EVERY MORNING AND I HAVE TO SAY I PRAY TO GOD EVERYDAY AND GIVE THANKS THAT I FEEL SO MUCH BETTER. TRY IT THERE IS ALOT OF GLUTEN FREE THINGS OUT THERE NOW, IT IS NOT DIFFICULT, YOU CAN DO IT. WE CAN DO IT. GOOD LUCK AND GOD BLESS!

  38. Thank you for all the info and inspiring messages. I don’t know what’s wrong with me yet but I am suffering from many of the symptoms found by others on this page: chronic sinus problems, mega bad cramps, bloating, and gas (every day) and swollen sore throat glands (on and off). My stomach problems seem to be getting worse & worse, and I also have restless leg syndrome, insomnia and anxiety (oh and weird boils). No doctors have been able to help me, I’m going to try to figure it out on my own. My guess is either gluten or dairy (or both). I don’t have the burning tongue though, only a tiny bit of exema on my outer arms. I’m just hoping I have the patience and will power to keep to the diet. I’m not a great cook & I live in the sticks so not a lot of alternatives in the local grocery stores. I’m so tired all the time too. But after reading all these posts i think it will be worth a try. Thanks for the stories. There is healing in sharing. X

    • Try to find a natural doc such as a chiro that will order the ALCAT test. It will show you what you are reactive to and no more guessing. My daughter and mother both did it and no more stressing and panic. They are both better and had so many of the things you spoke of. You can be sure its food related. Must embrace cooking. I dont like it either, but when I see happy faces, I learn to just do it. Find people in your area and see where they buy stuff. You might be surprised. Good luck to you

  39. First off, great site. Just discovered it after a decent amount of GF diet searching and this seems to be the best by far. Anyways, I recently found out (and by recently I mean like 3 hours ago) that there’s a good chance that I am Gluten intolerant, and have no started the fun time of figuring out what that means to me for the long run. Quick background: I’m 25 and have never really had problems with food and digestion in the past, but this past April I got sick with a pretty bad case of Mono which sidelined me for a month or so, and also had the unfortunate timing to have my past kidney stone problem kick in at the same time. Ever since then however I’ve been almost consistently not well. Stomach cramps, constipation/diarrhea, heart problems, difficulty breathing at times, just to name a few. So after months of tests and what not it seems to be heading towards a gluten intolerance. I still have a few more tests coming up within the next month but I figure why not get started right away. So I’m going to be using this site pretty frequently for advice and tips on how to go about living this new lifestyle. Also I was just wondering if anyone else on this site has had any problems with kidney stones related to Gluten? Because if that could potentially be a side effect that would be fantastic to know. Thanks guys and gals and I look forward to getting to know all of you :)

  40. i can relate. ive been in and out of the ER for the last 10 years. with terrible stomach pain, usually located around my upper right side, and bloat like someone who has a bad liver. i get a different diagnosis everytime i go. i havent really heard from anyone on here, yet, that their pain is soo unbearable that i would rather die. i throw up violently and get constipated for up to 1 week-10 days. ive recently started the gluten free diet, and so far so good, but my episodes are very inconsistant. i can go for weeks/months without any episodes, then i will have weeks of it. so its hard for me to tell if its working. i figure it cant hurt. im on a long waiting list to get into seeing a gastrointestinal doc at our university hosp. but i have all of the symptoms of celiac. dont understand why the docs havent run simple allergy tests. had my gallbladder out a couple years ago, and thought i would finially be cured of my pain. but no. i now worry after reading up on celiac, that ive damaged my intestines and its too late. for ive read that severe damage may result in cancer. thanks to this site and all your blogs. i dont feel like im crazy and its all in my head(thats the way the docs look at ya when they cant find anything wrong). i cant wait to get my life back! i hope n pray that a good diet, gf, will give me my life back. god bless you all and i pray for us all to feel better.

  41. I just re-read all of the above comments and thought I would refer you all to the book, Wheat Belly, just released. It is a great book that delves into how the wheat grain has changed over the decades. It has changed a lot in the past 40 years so what your grandparents ate is not what we are exposed to now. The grain has mutated into something without regard to how humans digest it. Many of us don’t digest it anymore and are having problems that generations ago people didn’t have to deal with. Dr. William Davis (M.D.) explains very well how wheat causes all kinds of problems and is a grain that we should all avoid: celiac patients, gluten-intolerant folks, and everyone else as well. He has me convinced. The book might be too detailed for some people, but he included many studies that are interesting to read and tons of valuable information to help you make the decision to cut wheat out of your diet and reap the rewards.

    I look at all the people eating wheat at every meal and I want to get on the bandwagon and tell them of what I read, but you can’t convince some people to change a diet that they have loved for years. If they had digestive issues like I have developed, they would change. They don’t want to associate their skin problems, depression, aches and pains, etc. to wheat. They would rather take meds and cover it up. Why not get to the bottom of the problem and solve it there? I feel like I have by not eating wheat for the past year and a half. I am 20 pounds lighter, have no aches and pains, and have cramps only when wheat sneaks into my diet by accident.

  42. I have problems with mouth sores, not just ulcers, and not just one. Could be 2-10 at a time. I’ve been to numerous doctors, and dentists, and no help. One doctor suggested getting a small pox vaccine again, which I did, although no help. Just recently read a book on gluten and the many problems it can cause. My mouth ulcers started in college, I thought my ulcers were stress related, although I’m like everyone else with stress coming and going, but my ulcers never go.
    Does anyone else have this problem?

    • I too have mouth sores(canker sores) almost constantly. 2-7 at a time and painful. Seen every specialist I could see before seeing a naturopath who suggested GF diet. I have been GF for almost 3 weeks and have a mouthful of new sores. Is it too soon to tell, I would have assumed feeling some difference by now. Also, this evening I think something I mistakenly ate had gluten in it, will I need to “start over” with assessing my results, as if this is day 1 of no gluten??

  43. Here is my story. I went gluten free on Oct. 1 after suffering with heigtened symptoms since early June. I noticed a positive change in my digestive well-being within just a few days of going gluten-free. I’m still suffering from fatigue, headaches and very small, short bouts of anxiety, although even those symptoms have diminshed to some degree over the last 10 or 11 days, which is what brought me to this site. I was curious how long it took other people who suffered from these non-digestive type of symptoms to feel normal again? I just want my energy back, and I wonder if part of the lingering fatigue is caused by the overnight change in diet?

    I now believe I’ve probably been gluten intolerant for many years, as my stomach always use to hurt after eating even as a kid. I’ve had episodes over the last decade or so, usually just one or two a year, when I would cross some sort of gluten overload threshold, and my body would go into shock (although I didn’t know it was gluten at the time). Symptoms like numbness in my limbs, join pain, inability to concentrate or communicate (almost like mini-seizures), severe anxiety, bowel problems, inability to sleep, etc. I ended up in the ER a handful of times, and was usually sent away with a diagnosis of being dehydrated or run down, and that it was in my head. Usually after a week of the BRAT diet (bananas, rice, applesauce and tea; again not knowing that I had inadvertenly eliminated gluten) I felt better until the next bout. I was tested for CD in Jan. 2010 and the tests came back negative, and my symptoms evetually dissipated again, and I was fine until this summer. I am an attorney and had one of the busiest seasons of my career, long days and late nights, I traveled 10 of 12 weekends in a row, with no down time, and all with a new baby (3rd child) at home. I believe the stress only enhanced my gluten issues, and I actually felt like I broke myself during this period since I can’t get myself regulated even after my days became a little less stressful. I even found anxiety creeping in, at odd moments like reading my kids a book before bed, and I was beginning to realize that my symptoms typically began after a meal. Long story short, after weeks of just feeling down right awful, lethargic, depressed and uncomfortable in my own skin, I decided to go gluten free. What finally pushed me to make that decision was doing research and finding out that everything I was equating to stress may actually start with gluten. My sister went gluten free about a year ago, and it changed her life dramatically, and she has been pushing me to try it for over a year now. Unfortunately, she did it for digestive reasons, and I never listened long enough to hear about the other symptoms gluten may cause, nor did I ever share with her my other issues. Anyway, after 11 days of being gluten free, I’m certain this is my answer, but I would love to know how much longer I will have to wait until I feel normal again as far as energy goes. I’m only 36, but have felt like an 80 year old man the last few months.

  44. Years of lung abcess, pneumonia, asthma,reflux, my son finally had reached the limit of what his body could fight off. We ended up at neurologist in Naples who finally helped my son. We started glutathione through an iv because he was given medication along with a vaccination that attacked his nervous system. Not only did the Dr help his neurological problems, but he got rid of asthma and all other illnesses by going Gluten Free. Years of explained trips to Atlanta hospitals. Within weeks of going gluten we did not need reflux medication, weeks later no more asthma. The child that had pneumonia,unexplained Viruses, lung abcess every year since the day he was born was no longer sick. We have been gluten free for almost two years and my child has only been sick once with a stuffy nose. The Glutathione and the gluten free diet has given my child a normal life.

  45. My son has also had the mouth sores until we went gluten free. I can tell if he comes in contact with it because his mouth will be covered inside with huge ulcers. Staying away from the gluten helps them go away again. Also we found a compound rx mouth wash from our Pharmacy that will help them heal faster. As long as we stay 100% gluten free they go away.

  46. It’s nice to read about what others have experienced and how they have improved their lives! In 2009 I had my thyroid and para thyroids removed because of cancer and infection. Since that time I had been battling stomach cramps, irritability, lower abdominal pain, insomnia, fuzzy brain, diarrhea and constipation which I thought were just side effects from the surgery and my body trying to adjust to the medications and being without its thyroids.

    When my husband developed sever stomach and intestinal pains I started research in possible causes for his condition. The first things that came up in research engine was Celiac disease and Crohn’s disease. After reading the research and others testimonials for a gluten free diet to help either relieve or eliminate their symptoms, we decided to try a gluten free diet and see what happens.

    It took about one and a half weeks before we started feeling better and each day we experience an improvement. His stomach and intestines aren’t as swollen, bolted and sensitive as it had been in the past. My fuzzy brain is gone-hallelujah! And my stomach and intestines are starting to balance out and function normally, and the irritability is starting to become manageable. Also the bonus side affect from switching to a gluten free diet that neither of us was expecting is the weight lose. We are both feeling better and looking forward to a better healthier life.

  47. I have had ME for nearly 4 years now and was told there was nothing that could be done for me, life is too short and i couldnt accept that! I have spent most of the 4 years researching for what could help me, i am now taking the best vits and minerals for my condition, this has helped my condition somewhat but i still have the low energy. I consulted a herbalist who suggested i go on a wheat and gluten free diet and to also cut out sweets, i was having terrible sugar and bread cravings. I started this immediately and also gota food intolerance kit which flagged up a dairy, egg, yeast, oat and a few more intolerances. This will be me going into week 3 and i am finding i feel more awake with a bit more energy, hopefully this will continue to improve as time goes on. I havent been at work for a year and hopefully this will change too.

  48. I just was diagnosed and have been on the diet less than 48 hours. Last night I had the runs all night long and today have a pain in my tummy. I didn’t have any signs of being sick before starting. Has anyone ever had this?

    • Andrea, often the body needs to detoxify itself when you begin a new diet. If you can stick with it for a few more days, you will probably begin to feel better. Be sure to drink lots of pure water to flush out those things that were poisioning your body. Best of luck to you!

  49. Has anyone tried almond flour as a substitute for wheat flour or other gluten-free flours? It is touted to be the most healthful of the gluten-free flours. It is also the most expensive. It is totally ground up almonds, so think twice about using it if you have a hard time digesting nuts. I made both cookies and a cake last week using the almond flour, thinking that I was going to make a healthier snack. I snacked on the cookies all week and didn’t feel that great, slightly nauseous. Then I made a carrot cake and ate a couple of pieces. A few hours later I was very sick, but not with the type of cramps I get from wheat products. This was tummy trouble that was going to come up any minute. I trace it to the almond flour. I am giving my 5 pounds of almond flour away to someone who can tolerate it. I learned the hard way, again. Nuts are hard to digest for a lot of people. You don’t want to trade one problem for another. Cramps from wheat products is one thing, but then to get nauseous from the almond flour is a double whammy. I will be sticking to the other gluten-free flours from now on, even though they are not as nutritious. Anyone else out there experience the same thing? I would love to hear from you.

    • I have not really had any problems with the almond products but I find if I eat too much sugar I get the tummy troubles and gas. Is your whole house GFree? because if you cook GF for your self and some one else comes in and cooks Glutien meals there could be some cross contamination for you. Cook wear is pourous and the glutien will contaminate into the GF cooking. If you dont bleach the cook wear after glutien cooking. I would love five pounds of almond flour are you in Texas?

    • Jan, if you used the almond flour 1 for 1 in recipes that may be your problem. After reading lots about cooking/baking with alternative flours, I’ve discovered that almost always the pros recommend a combination of flours, not just a single one, be it almond or any other flour. Also, if I use too much almond flour I will get a stomach problem (diarrhea and some cramping), but when it is used as maybe 1/4 of the total flour in a recipe it doesn’t cause problems and yet provides those nutrients we need. Maybe you can give that a try? This might save you some money too, as that almond flour is expensive!

  50. Soon going into week 4 and my hands arms and legs are aching, is this normal?

    • I think you might be detoxing your body. I am going through it with yeast removal.

      • Thank you, i was so worried the ME was getting worse instead of better!! Do you have any idea how long the symptoms will last? One thing i will say is my brain fog has gone!

        • I think its different for everyone, as our bodies are different. Be patient and just know that without all the foods that is making your body react so badly, things will only get better. I have seen progress on myself, my daughter and my mother. We are still going thru the healing process, but improving with time. Keep asking and learning as much as you can. I see 3 different holistic docs and learn new things from each.

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