Am I Gluten Intolerant? How To Find Out

In last week newsletter I mistakenly said that the only way to know if you are gluten intolerant is to try a gluten free diet. My wonderful newsletter readers wrote back to let me know that I was wrong. Here’s the question that I was responding to, followed by my readers’ responses.

Q: My doctor did a blood test and ruled out celiac. But my stomach issues continue. I am wondering if I have a gluten intolerance. Could you tell me more about this? Can they do a test to find out? This is all new to me and I am very overwhelmed and just want to feel better soon! I am thinking of getting your kit and trying no gluten to see if it helps. How long would I need to do it for to tell whether it works? ~Patti

There were several recommendations by my readers. The most popular by far was to have testing done by Enterolab. Following is one of the many emails recommending Enterolab.

I thought I’d chime in on the question from a reader about whether there is a way to test for gluten intolerance. You said there is not, except to do a gluten-free trial. But there IS a test, and I recently had it at the advice of a nutritionist and hormone expert, and I tested VERY positive for gluten intolerance.

I have no stomach/intestinal symptoms and have never felt bad eating gluten, but I do have autoimmune thyroid disease (Hashimoto’s Disease) and low bone density, both of which can be caused by gluten intolerance.

Lindsey Berkson, the nutritionist/hormone expert I’m seeing, recommended that I have the anti-gliadin IgA antibody test for gluten sensitivity developed by Enterolab. (Danna Korn says in her book “Living Gluten Free for Dummies” in the section about testing for celiac and gluten sensitivity that Enterolab is the only lab in the U.S. that does a stool test for celiac and gluten sensitivity).

Enterolab offers quite a few different types of tests for gluten sensitivity and the genes for celiac, as well as food allergies. I had the test I mentioned above, which costs $99 ($120 total, including shipping the test materials to me and the return UPS overnight shipping fee).

It’s a simple stool test, and it tests for the antibodies to gluten that are present in stool if someone is sensitive to it and is still eating gluten. You do the test while eating your normal diet that contains gluten. The doctor who runs the lab and patented the tests says on the website that the test is much more sensitive than a blood test because the anti-gliadin antibodies are present in stool before they can be detected in blood.

A normal level (negative result) is 10 units or less of the anti-gliadin IgA antibody. My result was 71. I called and talked to a nurse at the lab after I got my results because I was so shocked. I said “but I don’t feel bad when I eat gluten! Your lab must have made a mistake!” She replied that I am one of the many “asymptomatic” folks, but that continuing to eat gluten would damage my body, and that it might be the cause of my thyroid and low bone density problems. She said that most of their patients who test positive are in the range of 40 to 80, so my result was very high. But she told me that that is actually a good thing because it indicates that my immune system is still in good shape and is really pumping out the antibodies because it sees gluten as an invader, much like a virus.

You do not need a doctor’s prescription to take any of Enterolab’s tests. You can order the test(s) and pay on their website. One of the founder’s goals is to let people take their health into their own hands. A positive result of this is that the test results will not be in patients’ medical records to possibly be used against them in the future by insurance companies.

The lab site has a wealth of information on it about gluten sensitivity and celiac, and information about all of the tests. The website is:
www.enterolab.com

Once I looked at the website, I realized that I had looked at these tests in considering whether to do any additional testing for celiac/gluten sensitivity for our kids. It’s something that I need to revisit since John and I have not had any follow-up testing to make sure our antibodies are down, and the kids will need periodic testing due to our family history.

I found the Enterolab FAQ to be very helpful in explaining gluten sensitivity and why this stool test will detect a problem before a blood test. Spend some time reading over this.

Another reader wrote in with a great insight as to why having actual test results can be more helpful than simply trying a gluten free diet.

Maybe you’re not aware, but the gluten intolerance stool test that is given by Enterolab is considered VERY accurate. Dr Lieberman refers to it in her book “The Gluten Connection”.

I, personally, could have tried the GF diet, but just knew myself too well. If I’d not seen the results in black and white, I just don’t know that I would have been as careful or committed as I am. I ( as well as my husband who also tested positive ) have been 100 % GF for the last year.But knowing without any question that the damage was ongoing has made a difficult transition pretty much a no brainer.

My daughter and 1 of her 4 children just tested positive…( only 2 have been tested so far, but the other 2 will be tested next. She resisted it for the full year…didn’t really want to know, but again, once she saw black and white test results, the decision was an easy one.

According to Dr Lieberman, one of the biggest misconceptions that doctors (and consumers) are laboring under is that gluten intolerance is not as serious as full blown celiac. Not true…as those of us whose health has improved sooo much can attest.

Just thought you might like to know about the options for those who are convinced there is a problem…even when the docs blow it off..or say that unless you’re celiac, you’ve not really got an issue.

Other readers suggested having an ALCAT test, an applied kiniesology test, or having a small intestine biopsy done (which is the definitive test of celiac).

Weigh in with your opinions in the comments!


Comments

  1. anonymous confidential says:

    My daughters and grandchildren have had symptoms of celiac disease. I get bronchial
    congestion from eating much sugar, probably in combination with other foods, possibly
    fats or something in a commercial chocolate sauce for ice cream, for example.

    These are just some of the reasons I subscribe to your website, for which I thank you.
    None of are ready yet for a lab test yet, so we will try to do our own experimenting for
    now.

    I need to know the best flours and sweeteners to use, for a start.

    Any insight would be helpful to me but not yet to our children and theirs, so please do not reveal my name or letter to anyone who would deprive us of our confidentiality.

    Thank you.
    ACB

    • Just wanted to let you know that bronchial congestion can be caused by an overgrowth of the candida yeast in the intestinal tract, which then can emit toxins into the bloodstream and cause problems all over the body. Candida can also be found in the nasal passages. An overgrowth can be caused by eating a lot of sugar (or sugar/carbohaydrate intolerance), food allergies/intolerances, and taking antibiotics and over the counter pain meds. I mention it because you said it’s brought on after sugar consumption. Sugar seriously feeds candida and makes it worse. A quick google will lead you in the right direction and you can decide for yourself if it fits your symptoms. Good-luck!

    • All the arificial sweetners are bad for you. The best, all natural sweetner is Stevia. The best Stevia to use is by SweetLeaf because the only other ingredient is inulin which is an all-natural soluable vegetable fiber that nourishes the good intestinal flora. I use it on/in all my foods. I would, however, like to find out how to use it in cooking in place of sugar.,

  2. Valerie Vanderford says:

    Hello,
    I can speak to the Alcat test. First of all, it was VERY expensive ($600) and the food list that came back for me was ridiculously long. My highly intolerant list was very strange things (avocado, cottonseed oil, cucumbers and caraway seed) but my moderatlely intolerant food was almost everything imagineable. When you have that many foods come up intolerant, you need to work together with your doctor on “leaky gut syndrome”. That being said, the Alcat test showed I was okay with gluten and dairy, both of which I absolutely know I am not tolerant to because I have symptoms every time I eat them. I question the accuracy of the test for those who have eliminated “offenderes” from their diet (and were off them when they had taken the Alcat test. )
    To the person who has Hashimoto’s disease, it is imperative that you avoid gluten. Gluten triggers the auto-immune response in your body. You should read “Why Do I Still Have Symptoms when my Lab Tests are Normal?” by Datis Kharazzian. He has done some incredible research on Hashiomoto’s disease. If I had read this book 20 years ago, I would not have the problems I am having today as my auto immune condition is fairly advanced.

  3. I had a different kind of test. I saw a highly recommended ND named Dr. Andrew Kim in Portland, Oregon. He did a test with a machine that at the time I was quite skeptical of. He came up with many food sensitivities, including gluten, and many were ones I already knew were things that bothered me, like broccoli, and chocolate, peanuts and eggs. After he did his test I knew immediately what the problem areas were and I gave it 100% in getting those things out of my diet. I went from being so ill I could hardly get up from the floor if I laid down on it, to feeling so good I went out and learned how to hang glide! He’s been treating me ever since, and though over time my sensitivities have been harder to figure out because I got super sensitive to so many thngs. He said that I am not the norm, most people get better and are better able to tolerate occasional insults from foods that are problematic.

    Where his test caught so much, a blood test I had done caught almost nothing, and the MD said that gluten was not a problem, but that was wrong. I have found Dr. Kim to be an excellent physician, helping myself and my daughter, pointing out her sensitivity to milk long before she thought she had one, which it did eventually show up and now she adheres to a milk free diet for the most part. I think his approach is very accurate and non invasive and immediate results are nice too.
    About Dr. Kim:
    http://www.naturaltraditionsportland.com/aboutdrkim
    About the type of test he does:
    http://www.seekingbalance.co.uk/allergy-machine.html

  4. Diane Antone says:

    l want to agree with Mary that there isn’t a medically accepted test for gluten intolerance. I established that I was very gluten intolerant by a process of trial and error. I was suffering from incapacitating allergic reactions to many substances (pollen, airborne moulds, food funguses, dust, house mites, oats, caffeine and others). When I had eliminated gluten totally from my diet, not only did my severe coeliac-like symptoms disappear, but the other sensitivities diminished and I can now tolerate being around most allergens, except for wheat (harvest time as I live in the countryside) is difficult. I would also add that I have also got a severe allergy (causing anaphylaxis) to the chitinase containing group (avocados, bananas, chestnuts, latex and kiwis) and this problem has not been solved, of course, as it is a different allergic response to the gluten one. Anyhow, I don’t trust most doctors in my experience they know nothing or next to nothing (in the UK) about allergies, and they are worse than useless as they generally send you away labelled as a hypochondriac. Alternative health specialists in my local area in the UK are also no help except in lightening your wallet. My advice is to read up on it (Barbara Cousins books helped me get started) and listen to your own body.

  5. I had a small intestine biopsy done and tested negative for celiac, but the doctor said since I had already been gluten free for several years, the test might still be negative, and the only way to know for sure would be some very expensive genetic testing. I opted not to get that done, because I KNOW how I feel when I eat gluten, so the solution for me is simply not to eat it. I feel 100% better when I am careful and avoid gluten, so why do I need a test to confirm it? I’ve been GF for 7 years now, and even my chronic rhinitis has cleared up.
    I am glad to know about Enterolab, however, so I can get my children tested. Thank you for the informative post.

  6. I had the gluten testing done through Enterolab and it said I was slightly gluten intolerant. Both my primary and my hormone doctor did not accept Enterolab results as a creditable and said they never heard of them. I also had an Endoscope of stomach and the biopsy showed no signs of v??? (gluten) damage. So who do you believe????

  7. I had saliva testing for adrenal fatigue and gluten sensitivity through a naturopathic doctor. I had extremely high markers for both gluten sensitivity and adrenal fatigue. My brother was diagnosed with celiac via endoscopic testing.

    5 months later, I was diagnosed as hypothyroid. After being off of gluten for many months, I decided to try a half a piece of bread and suffered the consequences of stomach pain shortly thereafter ……

    I no longer have issues of frequent stomach pain and bloating/ gas. and skin blothches. I never associated my symtoms with gluten .
    I believe that gluten intolerance and hypothyroid often go hand in hand and it’s a safe bet to be checked for adrenal fatigue as well.
    Blessings and Peace
    And thank you very much for the information you provide!
    lisa

  8. Robin Peck says:

    I too used enterolab to find out that I have gluten, soy, dairy, egg and yeast intolerance. I too had never had GI issues but I have had lifelong eczema, which is considered an autoimmune disease. I got so sick that I could not taper off prednisone without having a full blown allergic response. I worked with a naturopathic doctor who helped me through this crisis. He said that my whole body was probably inflamed, both inside and out! I am doing much better after eliminating my problem foods, but it may take years to fully heal, if ever. I ate food that hurt me for 54 years, so it may take years for my body to recover! I am now on a paleo diet because I believe that I have trouble digesting all grains. I am glad to hear that gluten intolerance is becoming more accepted and understood. My sister is a diagnosed celiac and my one daughter has intolerance. My other 2 daughters probably have it also but aren’t ready to go there yet!

  9. I had the enterolab test done Jan 2011. I had been sick for 14 years (flu symptoms). I put myself on a GF diet after I realized all my symtoms cooresponded with gluten issues. Within 2 days I knew I had found the answer but was still looking for some confirmation. I also soon realized dairy was giving me problems also. I had the entrolab test run after being 53 days stickly gluten free and my stool results still came back positive for gluten (they say it can take several months for it to be out of your system) and suprise suprise dairy. I also had the genetic testing done and I carry a celiac gene and a gluten sentitivity gene meaning it comes from both sides of my family. I knew before I ever had the test run this was my issue and for my 2 tests for foods that I knew were problems came back positive is all I need to know.

    • I did talk with a few of people who have used it. One claims to have been diagnosed with celiac disease, took the product and can now eat gluten-containing foods again. However, another believes that they will take another bottle of the product after 6 months for maintenance. Jason will gladly answer your questions in the comment section of the link I posted above your response.

  10. I took the Entrolab test and it came back positive for the gluten antibody in my blood. I also had one gluten intolerance gene and one celiac gene, which is enough by itself for me to say no more gluten. I didn’t show any malabsorption on the test but when I took it, I had been on a gluten free diet for a few weeks already(as well as a large cut back on wheat over the previous couple of months). I did have malnutrition I found out later mainly with B12 and Vitamin D deficiency. I’ve seen a large improvement on the gluten free diet, but since I am not 100% better, I decided to do the ALCAT test. I just received my results last week, so I can’t say yet what eliminating these foods will do.

  11. I’ve had the test with Entrolab as well, and have been gluten free for a year, after the results came back positive. I can’t even begin to tell you the difference it has made in my life. We have 4 kids, three of which have been tested, two of our girls being positive and our boy, not. We have one more to go, which we are getting ready to do shortly. One of our girls is having a difficult time, as her “symptoms” aren’t typical. I know it’s hard for her since she doesn’t feel different by not eating gluten (diarreaha, bloating, etc…) but we can see a big difference in sleep habits, no more constipation and other issues that she has had. I am also getting ready to have the gene test done on myself and am anxious to see the results.

  12. I had the antibody test this summer, I don’t remember the name and it was negative or normal lol. I had already been on gluten free diet for a few weeks or month and my Doctor said I needed to eat gluten for 7-10 days before I took the test. I had no idea how much I needed to eat, still don’t know the answer to that question :) I only ate 1 serving a day. Anyway, 2 months later I had a Vit D test requested before I could receive a Rheumatology consult, and it was Extremely low! Only 4 when normal is 34-70 and most prefer it above 40! After supplementation for the past month I am somewhat better mentally and less migraines, fatigue and pain are somewhat improved but still debilitating. It takes months of supplementation to return to norm for Vit D apparently, since we store it for winter we have a “tank” that no one has determined yet how to figure out how long it takes to fill back up:) At least from my readings :) The blood test is easy, accepted by Doctors and then if positive you need to see a Gastroenterologist for an endoscopy. You can still have physical changes in duodenum, when you are feeling fine . A colonoscopy is NOT the test you need, I had just had one then after reading found out it is small intestine that is affected.

    • Edited last comment I forgot to clarify what tests I was referring to after I discussed Vit D , I jumped back to Celiac disease:

      Edited last comment I forgot to clarify what tests I was referring to after I discussed Vit D , I jumped back to Celiac disease:

      I had the antibody tests this summer, I don’t remember the names and it was negative or normal lol. I had already been on a gluten free diet for a few weeks or month and my Doctor said I needed to eat gluten for 7-10 days before I took the test. I had no idea how much I needed to eat, still don’t know the answer to that question. I only ate 1 serving a day. Anyway, 2 months later I had a Vit D test requested before I could receive a Rheumatology consult, and it was Extremely low! Only 4, when normal is 34-70 and most prefer it above 40! After supplementation for the past month, I am somewhat better mentally and less migraines, fatigue and pain are somewhat improved but still debilitating. It takes months of supplementation to return to norm for Vit D apparently, since we store it for winter we have a “tank” that no one has determined yet how to figure out how long it takes to fill back up:) At least from my readings.

      The blood test is easy for Celiac Disease/ gluten sensitivity, accepted by Doctors and then if positive you need to see a Gastroenterologist for an endoscopy. The DEFINITIVE TEST known in medicine as the GOLD STANDARD for Celiac disease is a small bowel endoscopy. You can still have physical changes in duodenum, when you are feeling fine . A colonoscopy is NOT the test you need, I had just had one (for my turning 50) not for celiac disease.

      ALL TESTS ARE NOT PERFECT( FALSE NEGATIVES ETC.) AND EXPLAINED VERY WELL IN THIS ARTICLE: http://consults.blogs.nytimes.com/2010/01/12/confirming-a-diagnosis-of-celiac-disease/
      I’m not sure why you would want to be tested outside of your Doctors orders because you need to be followed by a physician, and have further testing. Why go to the bother of ordering something that has not been proven by research? check this research result: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1352053/

      BEWARE of anyone promoting ANY test that they are SELLING!! Look to other resources and ACCEPTED RESEARCH, which means a double blind study with controls etc., accepted by scientific community as a reliable study!! Research studies are ranked by the quality of evidence according to strict guidelines. PLEASE review this information on what Evidence Based Medicine means :)
      http://en.wikipedia.org/wiki/Evidence-based_medicine

      The standard of care for medicine is Evidence Based Medicine -http://en.wikipedia.org/wiki/Evidence-based_medicine.
      Anything outside of Evidence Based Medicine is considered experimental, unproven and the Doctor would be considered practicing outside of accepted practice and susceptible to malpractice. This does NOT include CAM ( Complementary and Alternative Medicine) since MD’s do not practice CAM; you need to go to another provider and physicians are aware of the benefits of many CAM therapies.
      I Hope this helps,

      Another great article which explains about all the tests, the good and negative aspects, including stool tests, about false negatives results, the specific blood tests needed for diagnosis – yes more than one, and what they mean.
      http://consults.blogs.nytimes.com/2010/01/12/confirming-a-diagnosis-of-celiac-disease/

      All this information should be reviewed before making any decisions. At least review this information so you understand what your doctor is basing their decisions upon and what is the standard of care.
      Good luck to all

  13. I’ve been dealing with stomach problems for the last couple of years (among other things.) I’ve been following Dr. Marcelle Pick’s website for women’s health (she also notes a large number of patients who develop gluten intolerance.) Several months ago I found a cookbook (Allergy-free Food, Octopus Publishing Group, 2005) for dealing with allergies and spent a couple of months on the allergy ID diet after standard skin allergy tests revealed nothing. It’s very severe – cuts out all gluten/wheat products, dairy, eggs, all prepared meat products (cold cuts, sausage etc), fish/shellfish, mixed oils, sesame or nut oils, margarine with dairy added, shortening, tomatoes, avocadoes, kiwi, blueberries, citrus fruits, processed veg/potatoes, tomato juice, alcohol, tea, coffee, fizzy drinks, chewing gum , mouthwash, chocolate, sweets… You go three weeks without eating any of these things. If your symptoms begin to subside you begin adding various foods back into your diet. (Eggs went back first into mine because it’s one of the only protein foods I eat for breakfast, cottage being the other main one). If you have no reaction to the product the first day, eat it again the next day and third day. If you have a reaction, do not eat the product and wait until the symptoms disappear before trying another food. I did this, sometimes adding things I was quite certain wouldn’t be a problem a little more quickly. Of course it takes a long time to reintroduce everything. My stomach problems cleared up. One surprise to me was popcorn, which never used to bother my stomach but now I just have to resign from eating it. Some products with gluten give me problems again so I need to try a gluten free diet again. (Things with sugar, yeast and gluten are the worst – sugar worsens the effect of gluten in the stomach and both lead to leaky gut syndrome, which it seems I probably had.) Dr. Pick is also really big on healing stomach problems and finds that this leads to other health problems clearing up. (Many good articles on her website, http://www.womentowomen.com.)
    I was interested in reading that someone had Hashimoto/thyroid problems. I have hypothyroidism and wonder if it’s connected. Does anyone else have this connection? I am also curious if gluten intolerance develops from a very stressful life/adrenal function problems etc.

  14. Emily Davis says:

    I began the gluten free diet on Feb. 9, 2011, as per my Dr.’s instructions, and I have realized wonderful results from doing so. I have felt so much better, and my blood sugars are down to almost normal (I’m Type II diabetic) and my fibromyalgia is completely gone. I will never go back to eating gluten again. I had the ALCAT test run in early August 2011 to find out what else I need to avoid, and it was well worth the money! What the ALCAT does is alert people to foods they are consuming that they show internal reaction to, but that do not cause overt allergic reactions that can be seen outside the body. I had reactions to cabbage, mushrooms, okra, and cumin, as well as other ordinary foods assumed to be ‘ok’ for someone following a diabetic diet. These ordinary foods are all ‘good’, ‘acceptable’ foods – but for me they cause problems, so now that I know I don’t need to eat them, I won’t. I recommend the ALCAT to anyone who wants to ‘fine tune’ their food intake, and thus eliminate foods that their bodies do not tolerate well.

  15. I haven’t had the Enterolab tests done but have had the blood tests and biopsy done which were both negative. HOWEVER, I had IgM blood testing done which is a delayed allergy testing done which showed I was positive for wheat allergy. When the other blood test and biopsy done by the GI doctor it was done when I was already following a gluten free diet!! Dumb! It is suppose to be done while eating gluten!! So, because I had the positive IgM testing done, we know I am gluten sensitive. There IS more than one way to skin a cat so to speak! And, I feel so, so much better avoiding the foods I’m allergic to. Finding out about gluten was just a start as well as I’m allergic to far more than gluten. So, finding out about allergies is definitely a huge help as you can feel so much better avoiding what you are allergic to!

  16. I had very good luck with the Enterolab test and would recommend it! Eliminating those foods helped. I had to have follow-up IgG testing through my local functional medicine specialist as well in order to further tweak my diet (I never would have been able to figure out all the things I had reactions to through an elimination diet – there were too many).

    I have horrible food intolerances. Once I found which foods to avoid my gut pain lessened considerably (for me that is all grains/grain-like substances, dairy, eggs, legumes as well as most of the foods I ate daily for many years). I’ve also had comprehensive stool tests and quite a bit of bloodwork done through the functional medicine specialist. She is working to calm the immune system reaction and restore gut health. It’s working. The more veggies & flesh protein I cram in my face, the better my gut feels!

    I don’t miss gluten, dairy, legumes or all the crud I used to eat. I wish I could eat the gluten free grains, but for me that isn’t possible right now – too inflammatory. I’m following a paleo diet of fish/meat & veggies. I have a serving or two of fruits each day. I’m learning to cook and healing.

  17. I had the Enterolab genetic test – there is a cheaper gluten sensitivity one – and in Canada this costs about $500. I did this because my brother had it done with his whole family. We also had our mom do it. Mom has two genes whereas my bro and I have one each, so we know where the sensitivity comes from. My dad apparently did not have it. It is extrapolated that my Mom’s parents both had it. Strange how everyone ate a lot of rye and when Mom came to Canada she of course ate wheat but no symptoms until a few years ago when severe osteoporosis and severe arthritis hit (both autoimmune diseases). She’s 89 now and has been gluten free for almost a year now. I am hoping she will eventually have less pain as she has a tremendous amount at times. Both she and I have hypothyroidism too. She takes a synthetic thyroid pill but I take the dessicated natural kind (from sheep or pigs). I hope to avoid my mom’s severe autoimmune problems although I was in my 50s when I stopped eating the “glue”.

  18. I don’t agree that your test is the only one out there because i had my son tested by Metametrix. Lab in Duluth, GA. I can agree that once you see it in print its alot easier to stick to the diet. My son is 2 and its hard. Thought going GF would cure his constipation but no luck but happily it has curred is eczema. And all his weird skin stuff.

  19. Linda Fields says:

    Items you would asssume “safe”- ex chicken, may have been exposed to chemicals during processing, packaged with chemicals to retard growth of bacteria, or injected with flavor or color additives. Inquire, ask a company representative who you feel is informed and sensitive to your issues. I cannot consume inexpensive meats without distress. I read the labels looking for gluten free and casine free on processed meats, ham, bacon, kielbasa etc., their in your store.

  20. Linda Fields says:

    A great majority of gluten free diet followers have diagnosed themselves. I did after 30+days of hospitalization with only IV fluids a night nurse suggested I follow a gluten free diet after my release. I felt better in a few days, it took 18 months to restore my body. At a follow up visit my Dr. who was reluctant to diagnois celiac poo, poo’d the idea of celiac instead advising me to continue eating everything I wanted whereafter he would start trying different medicines to manage my symptoms. I simply told him NO. If I feel better on the diet, why not control the symptoms with diet instead of drugs. I never went back to that Dr., opted instead to educate myself on what I could eat, never intentionally strayed from the diet and pretty much have my life back. That’s the meaning of success to me.

    • Calamity Annie says:

      Good for you! We need to break the mind set of believing whatever a doctor tells us if we feel it is not good for us. My daughter (who is a member of the American Association of Drugless Practitoners and schooled in holistic nutrition) and I have “shopped” and dropped doctors in the past until we found one that is nutritionally educated along with his medical training and is open to listening to us and discussing options. He believes that we do know our own bodies and takes our insight into consideration in our treatment. Having a trusting relationship with one’s doctor is paramount in diagnosing and treatment of medical issues. Kudos for not going back to him!

  21. Calamity Annie says:

    I am horrified and seriously concerned about any posts or people believing in a “cure” or “relief” for Celiac or Gluten Sensitivity! The only cure is food – stay off of ALL gluten – period! 100% of the time – no relapses – no excuses. The gluten damages the villa of the small intestine that absorbs nutrients and without nutrients you eventually die. Even less than a teaspoon of cake is treacherous to those little villa trying to work for you – it flattens them and they are unable to work. Enough damage and they will not work again.

    Please read “Celiac Disease – A Hidden Epidemic” by Dr. Peter Green, Director of the Celiac Disease Center at Columbia University. Read it all the way through, page by page – do not skip sections. You will realize that both Celiac and Gluten Intolerance are major medical conditions and can be fatal. The great news? It is the only medical condition that is 100% CONTROLLABLE by diet. NOT curable – controllable. To date there is no cure other than your own monitoring of food. It is not as hard as it seems. Restaurants now carry allergy lists in their kitchens – just ask for it so that you know what to order.

    Major food chains are now carrying some great GF options – as well as online. I found out I’m celiac w/the skin disorder only 10% get – itchy rashes that go away when I take out gluten. If I accidentally ingest it thru toothpaste or even lipstick, I get new sores. Same w/food if I do not watch it. It is a lifestyle change – only that. It is better than many of my friends who have had strokes, are in wheelchairs, lost legs due to diabetes – I am blessed to only have that for a disease – one that I can control!

    On the “stick” allergy test there is now in most of them the gluten sensitivity as well. If you are sensitive – treat exactly like celiac. Stay off gluten. Period.

    Good luck – I hope I have scared some people “straight” on this life-threatening disease. And yes – I know a close family friend who died of it. The shame was that she was older than the findings now about the disease and they found it on her deathbed but it was too late – everything was shutting down from lack of nutrients.

  22. we had our daughter tested through Enterolab when she was 5 because she had so many symptoms that seemed to point to a problem with gluten. Her doctor wasn’t familiar with the test Enterolab does and did not think it was gluten-related. As it turns out, years later (she will soon be 11) we just found out that she has had Hashimoto’s all this time (TSH of 261), and what is striking is that the symptoms are extremely similar to gluten sensitivity symptoms. I will re-do her test and also test myself-perhaps i can persuade my husband to take the test, too.

    But I wonder, does anyone know of a person who’s taken the Enterolab tests and confirmed that they do not have an allergy of some kind? It would make me feel better about our results to know that there is some kind of result possible other than a positive one…Anyway, I have removed gluten (as much as I can be aware of) from our daughter’s diet, and I have joined her in being GF so that she is not doing this alone.

    As much as we can, I serve GF meals to the whole family. We are happy with GF pastas on the market, and I have recently learned how to make great GF potstickers and GF Swedish pancakes, as well as very respectable GF pizza. I make GREAT GF chocolate chip cookies (yes, I am saying so myself!). I am looking to find a good way to make GF cinnamon rolls and if I could manage something close enough to GF bread that is good to use for bruschetta, I think we’d be in heaven. Any good recipes out there?

    • After being diagnosed as gluten intolerant by a test from Enterolab, we have been going through our 4 children to have them checked as well. Our 3 girls all came back positive, while our boy was negative, so yes…both results are possible!! We got an incredible cinnamon roll recipe off http://www.glutenfreehomemaker.com

  23. Janene Grace says:

    Hmmm. About 5-6 years ago the gastro doc scoped my small intestine and said “you are not celiac”. I went home. Fast forward 5 years later and within that time, gall bladder removal, adult onset asthma, fibromyalgia, hypothyroidism, many medications, dairhhea, heart palps, etc and when I start bleeding he does lower scope. Clean. “Well,” he says”why don’t you try the “sprue” diet”. I went home and found out what it meant. Two weeks later I am feeling so much better by my next appointment..I know what is causing the problems and 35lb weight loss. He is surprised.

    I did the entero lab test and do not have the celiac gene but two genes that are likely to cause gluten sensitivity. It is very important to go beyond the basic celiac testing iff you have tested negative. Don’t lose what I lost. Alcat testing is next. Oh, by the way, I’m off all fibromyalgia medicine, no asthma attacks in a year. Surprisingly, at a follow-up visit to the rhumatologist for the fibrmyalgia, she tells me that gluten can trigger it. Hmmm Why didn’t she have me try the diet when I first went to her three years ago? Be proactive!!

  24. I had an ELISA intolerance/allergy blood test done last year, which cost $82 ordered through a naturopath, and negative for celiac disease. It was positive for many different foods: wheat/gluten, barley, oats, rye, milk, cottage cheese, yogurt, coconut, swiss cheese, very slight to nuts and seeds. I feel the test was accurate in most instances. It was negative for cheddar cheese, so I did my own elimination and added it back in. Unfortunately, I can neither eat nor drink any cow product. I was told by the testing facility that anything either not positive or slightly so would not bother me. I have found peanuts not agreeable now. I love butter. I made some cookies with some butter and shortening. Not a good idea. I recently found out that homemade lard is actually good for you. I use this with no side effects. I believe every test can have its false positives, even Enterolab (according to reviews), no matter the cost.

    • kristin olschefski says:

      i was wondering if the elisa test is the same as the alcat. i heard the alcat is about 600 dollars and tests for intolerance of foods…
      and how would i go about learning more about the elisa test?

    • Hi all, I was diagnosed with Gluten intolerance after a blood test in 2004, after having been sick for over 15 years. My Thyroid and Adrenals had quit, and my bodies self regulation quit, I was down to 94.2 degrees body temp. The blood test showed allergic reaction to gluten, dairy, eggs, soy, peanuts, and other things.
      I found it took me only several weeks to heal up after going off wheat products, but still suffered symptoms that plagued me for another 5 years, as I weeded out products that had soy in them. Soy bothers the large intestines, wheat/gluten, the small intestines and then dairy, the stomach and whole thing. However, today I can tolerate raw milk products. It seems the pasturization process alters the milk so I cannot tolerate it, but take limited quantities of butter, yogurt and cream (on my gf oatmeal for breakfast) from raw milk.
      It takes a bit to get the flora back in your intestinal tract, our family has used the Gaps Diet sucessfully. Its not a program for the faint in heart, but does work.
      Today, I am healthier at age 61 than I have been since I was 45! I feel great!
      The real solution is to eat natural whole foods, not the processed stuff.

  25. Thank you Mary Frances for this topic. I was diagnosed with Lupus and fibromyalgia in 2006. It all mysteriously went into remission when I eliminated gluten from my diet. With the help of a naturalpath using kenistiology, we have eliminated cow’s milk, corn, and soy! With these multiple food sensitivities I suspect several more, but the Metametrix Metabolic Panel (blood and urine specimines you can collect at home) recommended by my doc interacted with my prescription meds (another reason to hate pharmaceuticals). I’m glad to learn of alternatives.

  26. In July 2010, a chiropractor suspected I had food allergies and suggested I do testing. He recommended Enterolab. The results showed I had sensitivity to gluten, for which I have 2 genes. Two months later we moved to Costa Rica and I thought I should find a GI doctor to follow my condition. After many expensive tests, all I was told was that I did not have celiac disease so my condition was not severe. I was sent to an immunologist to determine the cause of my problems. After meeting with the immunologist I realized that I would not find the appropriate help in the traditional medical community, though they were all very sincere. I was given the name of an excellent nutritionist in the U.S. but working long distance is difficult. I recently found a naturalist doctor whom I am trying. She also has gluten intolerance. They both said I had adrenal fatigue. I am finding that doing my own research is crucial no matter who attends me in my health. Thank you to those of you who have shared your experiences and information.

  27. Kudos to all of you who are being so proactive with your own health! I have not taken any tests but when my own intuition that I might be having issues with wheat were echoed by my chiropractor I decided to test the waters and try going gluten free. My stomach and digestion have never been an issue but since my back pain continued and had progressed to the point that every joint in my body hurt (even my TOES!) I was ready to try anything!! Happily I am discovering that ridding my diet of wheat makes a huge difference. I just wanted to share my story with you because so many times the conversation regarding the symptoms of gluten intolerance focuses on the digestive system and the truth is it can cause a multitude of health issues. Thank you all for sharing your experiences and wisdom. It is a blessing to have your insight in helping me find my way.

  28. I love love love your website! Thank you for taking the time to share with all us the gluten & dairy substitutions you have found. I am very passionate about this subject after my daughter suffered for 9.5 years with Celiac Disease before she was finally diagnosed last year 5 days before Christmas. She was 9.5 years old at the time…yes, she suffered her entire life until a dear friend of mine told me about the testing at Enterolab. I found $600 to be a very inexpensive testing method considering in my daughter’s 9.5 years we have spent thousands of dollars ($45K in 2010 alone). She had been in and out of hospitals. She had been poked and prodded more than any child with such a simple diagnosis should have endured. By the time of her diagnosis, she was vomiting daily and had started fainting. NOT ONE DOCTOR suggested testing for CD and when I brought it to their attention that I wanted her tested for it, I got brushed aside. I wrote a story on getting her diagnosed that was published this year in the book Speaking Your Truth Volume II. My daughter suffered for a reason…for me to educate other people on the signs, symptoms and diagnosis. She is now doing AMAZING! No dairy and no wheat was an actual easy fix for our family b/c the alternative was her starving to death b/c her body wasn’t getting the nutrition it needed. Now as we approach the holiday season, I am searching for the dairy free/gluten free substitutions our favorite dishes are going to require.

    Back to the Enterolab testing….because we testing her for everything, I believe we would have never known about the dairy aversion if we had not done the full testing. We could have taken gluten out of her diet but she still would have been very sick from the dairy. We now know that she is okay with soy and several other items but needs to always stay away from gluten & dairy. We feel so very lucky to now have the answers we were looking for and that our daughter is healthy. Since I know I carry a gene, I have also gone off of dairy & gluten to prevent an autoimmune disease from attacking my body. It wasn’t a matter of if but when if I had continued on poisoning my body with these ingredients. I feel amazing, dropped 15 lbs and know that we are all eating healthier than ever before. Thanks again for all that you do to educate others on living a healthier life free of gluten. It can be done and with us all working together, the journey will be an easier one.

  29. helen lillas says:

    HI I live in New Zealand.
    My daughter is Supected Gluten intollerant my sister has been diagnised. however as my daughter is only 2years old and we know that even a small amount of gluten ie attibotics can have huge effect on her we havn’t had her medically tested however our local chiropractor did a test using litttle bottels containing the enzunes and the bodies reaction. this was amazing and from this test we learnt she is allergic to gluten and lactose which we had strong suspisions as well as maze, capsican and egg plant. since we have deleted the gluten , and the capsian from her diet as well as limited the maze she is a 100% better. so sometimes its a bout trial and error. Ps we havn’t had her medically tested because i refuse to let her eat gluten to put her in hosptail to get tested.

  30. I want to clarify that one of the tests Entero Lab does is a cheek swab for the 3 genes that can be involved in gluten reactivity. Only one of those genes predisposes to celiac, but all predispose to gluten reactivity, which will often affect the thyroid over time. Celiac can only be definitively diagnosed at stage four, after a lot of damage. To have 2 genes but be told there is no celiac may be technically accurate, but unhelpful. The body is still inflammed from the gluten reactivity. I have 2 of the genes, including the one for celiac, and have never had a classic “celiac” symptom, but this is the most common scenario. Subtle symptoms like gaining a pound or two overnight after bread or pasta – that’s my symptom. But I do show up postive for thyroid antibodies, confirming that gluten has been inflaming my insides. Cyrex Labs has an Array 4, which tests for cross reactors – 24 substances that the body can interpret as similar enough to gluten that you are sensitive, even though most of them don’t have gluten. They do include rye and barley, but also sorghum, coffee, milk protein and fat, sesame,hemp, and more. I actually did this before the gene test. Having the cross reactors basically confirmed some kind of gluten sensitivity. Adrenal fatigue is common, as the body is constantly trying to heal the inflammation. Heal the problem, and you can effectively address the adrenal issue as well. I am now pursuing the Entero Lab stool sample because I really want to get a complete picture on what my body is not happy with, even though I don’t have digestive symptoms. It may be the basis for low energy, mild depression, lack of motivation, dry skin and hair, and a host of other “symptoms” that at first glance no one would associate with a dietary reaction.

  31. Would anyone here please have a gluten free, soy free, vinegar free, honey free, potato starch free, lactose free bread recipe for the bread machine I can try? I have food allergies to these foods. Any help you have would be greatly appreciated! Thanks

  32. I think you need to take a look at Enterolab: A Scientist’s Viewpoint, at http://www.celiac.com/gluten-free/blog/856/entry-1546-enterolab-a-scientists-viewpoint/.

    Note that the tests offered by EnteroLab have not been validated by outside laboratories or through peer-reviewed research, even though Dr. Fine has published many articles about other related subjects. The power of an income stream?

  33. I have MS and it was suggested that I try a GF diet. Is anyone familiar with GF for MS? Also, when I was in my mid 30′s a friend took me to an herbologist/nutritionist who had blood tests done, and the results came back that I was allergic to dairy, and that was why I couldn’t/wouldn’t loose weight. That was 30+ years ago, and like most overweight people I’ve yo-yo’d.

    Right now I’m on the Opti-fast diet prescribed by and very closely monitored by doctors. I haven’t discussed this with them, but I will when I get to my goal weight in about 40 pounds.

  34. I just wanted to thank you – after reading your blog. I ordered an extensive panel of tests from enterolab and the results were shocking. My gluten unit number was 347!, soy 88, dairy 125, eggs 52 – for the past 42 years I have filling my body with essentially poison. anyway I’ve got a big lifestyle change ahead of me will be coming back to your site for inspiration to get me though. If anyone is thinking about getting testing done, I highly recommend it. worth every penny.

  35. Just a quick FYI. You can get the celiac genetic test done yourself as part of the testing at 23andMe. Their prices just lowered to $99, which includes shipping. I tested with the maximum possible genetic risk for celiac, which was pretty interesting. It doesn’t tell you if you actually have celiac, but whether you are at risk for developing it.

  36. For any students planning on going to college and staying in a catered dorm, please get tested properly. That way you will have a document. I had an absolutely awful experience at a University down under and have touched on it in more detail at http://icmn91.hubpages.com/hub/ursula-hall-gluten-free

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