Staying On a Gluten Free Diet: Why Am I Not Feeling Better

I received a lot of encouraging feedback on my post on The 10 Reasons You’re Not Staying On a Gluten Free Diet so I wanted to follow up that up with a moreindepth discussion. I’ll start out with Reason #10 and work my through them as time (and your interest) allows.

Here’s an excerpt from the post to refresh your memory:

At first glance it would seem reasonable to stop the gluten free diet if you’re symptoms are not improving. But, let’s ask a couple of questions first. First, how long have you been gluten free? Second, have you really been gluten free?

One reader suggested that I should add the question – “Am I not seeing results because of other grains/allergies?” I agree that this is something that should be considered so we’ll include it in this article as well.

Have I Been Gluten Free Long Enough?

Full disclaimer here: I have absolutely no medical training. I’ve just been cooking gluten free for eight years and eating gluten free for 5 years. That being said, I do read a lot of emails from all of my readers so I have a general idea of what happens when you go on a gluten free diet. Some of your symptoms may clear up quickly – within a few days. Other symptoms take longer to heal – 3 to 6 months. Other symptoms may never heal, especially if they are the result of nerve damage. Following are a few quotes from emails I received last week.

My daughter presented with all the celiac symptoms, yet when tested , came back negative. We tried the gluten free lifestyle, and stuck to it, and believe it or not, it took 4 months to heal her system. – Anne in Canada

I want to let others who are new to celiac disease to hang in there with the diet. It took me exactly six months to finally get back to feeling normal. The diet DOES work! – Phyllis

I have a wheat allergy and I saw complete resolution of bloating and abdominal pain within 3 days. John also experienced relief from his celiac symptoms fairly quickly. Many of my readers also see reduction or relief of symptoms within a few days or a few weeks, so it’s not always a long process.

Am I Completely Gluten Free?

Another reason that you may not see an improvement on a gluten free diet, is that you may not actually be gluten free. In order to know that you are gluten free, you need to be sure that the food that you eat is gluten free from the moment it is produced to the moment it enters your mouth. This will require that you become familiar with looking for Gluten Free labels, learning to interpret the many allergy manufacturing warnings, calling manufacturers that don’t provide any allergy information, and making sure that gluten in your kitchen is not making it’s way into your food.

This is a lot to figure out. It is. (That’s why the chapter in my ebook that deals with this is the longest chapter) But, to really be sure about whether gluten is causing your problems you need to learn about all of this stuff, do it, and then patiently wait to see how your body reacts to no gluten.

Is Gluten My Only Problem?

The further I go into my gluten free journey, the more clearly I realize that the gluten in wheat, barley, or rye is NOT the only food that can be/is damaging to one’s health. All grains (and some other foods) contain a protein called lectin, which is basically a low-level toxin that the plant produces to discourage animals (including humans) from eating it. Lectins can cause serious gut issues and you might not find complete relief from your symptoms until you eliminate all grains. Here’s a great article about lectins, what they do to your body, and how to limit them in your diet. Here’s another article about how traditional food practices like soaking and fermenting can help reduce lectins and other harmful aspects of grains.

Casein, a protein in cow milk, can also cause symptoms similar to celiac disease. Many of my readers are also allergic to soy, rice, corn, eggs and nightshades. Others have to strictly avoid sugar and yeast. There are a plethora of possibilities and you may need to consider whether these foods AND gluten are causing your ill health.

Comments

  1. I’ve been egg free for about fifteen years and gluten free for more than three, but my symptoms didn’t really resolve till I discovered that I also react to all the vegetable gums – therefore I can’t use pre-mixed GF flours and as most packaged GF foods contain vegetable gums and/or egg they are also out of the question for me! It is definitely worth persevering with a GF diet but if symptoms don’t fully resolve you need to start testing other foods and additives one by one by removing them from your diet, to see if you can pin point what you react to… everyone’s digestive system is different and it can take time to find your triggers.

  2. My 15 yo son has had abdominal pain for 7 weeks. The doctors can’t find a problem – so we decided to do a gluten free trial. Since his regular diet is primarily breads/cheese/fruit – this has been difficult. We’re buying lots of off-the-shelf foods labeled gluten free – reading all labels. We are also making GF foods at home – but we haven’t gone as far as buying new cookware – so I know there’s trace amounts. We haven’t seen any change in symptoms in the last 2 weeks – and I have no evidence to point to gluten as a problem – so I’m wondering how much longer to continue. If we quit – is their a protocol for going back to gluten that would tell us something?

  3. Has your doctor tested for celiac, lactose intolerance, irriatable bowl syndrom and chrones disease?

    also if your son has constant constipation try giving a table spoon omega 3-6-9 oil morning and night. This also helps with digestion problems. also has your doctor checked for apendix?

  4. Hi Lisa, you really should go to a nutritionist or naturopath to do a trial, there is a lot more to doing a food trial than just not eating gluten containing foods. You’ll want to know he’s getting enough good carbs from a variety of GF grains/pulses etc. because at 15 he needs them for energy and growth. I lost 12kg (approx. 24 pounds) over my first year living GF, some people put on weight and some loose weight – everyone’s different. A good nutritionist or naturopath will be a great help to you and your son, especially if gluten is not the only problem. Hope it all goes well and you get him sorted out and feeling better, its so hard for Mums to watch their children go through this sort of thing… been there myself!

  5. christine says:

    my 17yr old daughter is having stomach cramps and dirarhea when she eats anything with breads, milk, or fruit, including tomatos. We are still trying to find out what is wrong. She is trying not to eat the offending foods. Some of the symptoms are better but still has dizziness. It is so hard for her to find foods she can eat. Is it normal to be allergic to ALL three foods groups? Could it be celiac disease or something else? Finding recipes with no bread, milk, fruit or tomatos is hard even with gf recipes. Any advice for us, a mother who worries and a daughter who is discouraged and afraid.

  6. I am in my late 40′s and have been GF for 5-years. My intestinal symptoms cleared up on a GF diet within 3-days. I also suffered from severe nasal allergies, which greatly improved (up to 80%) on the GF diet, but wasn’t completely resolved. I also had bouts of depression, mild arthritis, and frequent yeast infections with vaginitis, which I thought was totally independent of the gluten allergy since these symptoms did not resolve on the GF diet. Over the last 2-years, the yeast infections and vaginitis continued to worsen, and I also began needing reading glasses. In the past 6-months, the vaginitis increased dramatically, and my eyesight and arthritis also continued to worsen. Seeking further treatment regarding the vaginitis, my doctor didn’t have any suggestions for me other than looking for a new food allergy. One celiac website suggested the nightshades as a possible culprit, and when I researched that food group, another website stated that the nightshades are known to cause inflammation in people with autoimmune rheumatoid diseases. Within 12-hours of being on a GF/nightshade free diet, not only was the vaginitis cleared up, but the arthritis and depression as well, and my nasal allergies are a fraction of what they were prior. Within 2-weeks I could see as well as I had 5-years ago. I now make almost everything from scratch, because even the slightest amount of paprika or other nightshade ingredient can bring back all my non-intestinal symptoms. It appears to me that the longer a gluten-intolerant person remains on a non-gluten-free diet, the more prone that person will be to acquiring other food related symptoms, possibly due to the intolerance becoming an autoimmune disease. My youngest daughter, 12, was diagnosed with gluten intolerance 4-years ago. Although she has only mild intestinal symptoms, I have stressed the importance of not straying from her GF diet to prevent the additional symptoms down the road.

    • Linda Wildman says:

      There are things within the gluten that we need for our bowl system so you must take other things to help keep the bad bacteria from taking over. Ck on line as they tell you about it in the celiac foundation site.

    • My husband has had double vision for four months. He has been gluten-free for three weeks (on supplements about a week). He is getting chiropractic treatment for a 9mm shorter leg and is wearing a shoe lift. Christy, have you had any recurrence of vision problems? Does anyone have experience with double vision being caused by gluten problems?

      We have seen multiple specialists for the vision (had testing for many eye disorders and everything negative).

      As far as the nightshade vegetables, we have been eating potatoes 2-3 times / week. Does anyone else have experience with healing after they cut out nightshade vegetables?

  7. martha schmidt says:

    which are the nightshade vegtables – I can ‘t seem to recall all of them.

  8. Linda Wildman says:

    There is one thing people should consider. A lot of foods are being hybridized for looks and shape and stupid stuff. They don’t consider what some of the changed do for digestion and items within that help the body. The more that is done to the vegetable or fruit the more altered it is. Find the old vegetables and fruits that are not hybrids. I try to buy the old seeds that are the original and grow and process them my self. They taste better and my body uses them better. More has come out about artificial sweeteners and other food items. I think it is worth looking in to. I was born with celiac disease but I doubt that my parents ever heard of it in the 40′s and 50′s. The more we change our foods the more problems people are having. My osteo is better now then before and when I think of all the calcium pills I took that did nothing at all, it makes me wonder why my dr never thought of it. Dr’s don’t know everything so sometimes you need to go over everything your self and find out if anyone has the same problems then see if there is help for it.

    • Natalie Callier says:

      Linda,
      I have only been diagnosed with celiac disease for about 2 months. Like you, I am pretty sure that I have had undiagnosed and misdiagnosed celiac disease all my life. I agree with your 2 posts that I have read and really hope that you can offer me some advice / info. (If you would prefer to email me off this forum that will be fine.)
      While I am sure that I have been unintentionally glutened, I am making every effort to be sure that I am not glutened and have no desire to cheat. The problem is that although my gastrointestinal symptoms have definitely improved / resolved, my dermatitis herpetiformis symptoms and neurological symptoms have not improved and have possibly worsened. Previously I have had all kinds of allergy tests, including food allergies, but I showed none of these allergies. No soy, no dairy, no egg, etc. Can you offer any advice? info?

      • Linda Wildman says:

        Natalie,

        Go over everything that you are eating. Or using. Lipstick has wheat product in it as well as makeup. Chapsticks also need to be cked. I use natural stuff but you could be sensitive even to some of that. I have found my depression is less I really feel alive. But I have osteo in my joints and bones so that adds to pain these can cause problems as your body deals with it. I find greens are the best answer for these.
        You could be allergic to things in your environment. Ck out what you feel and when you started feeling that way. See if you can pin down something. I have stopped using plastic containers for the micro wave as they give off gases. Plastic drinking bottles also give off gases that are not good for us. They are real bad if left in heat. It may not be an allergy but a reaction to something that you use or am around. There is pbc(a bi- product of plastic) in alot of our foods and you could be reacting to that. I have cked out the internet as that is where I have found a lot of answers. I was reading on the skin problems and I can’t remember what was all in it. I use CARE 2 as a good source of product issues. Post your problems on line and see what comes up. Make sure it comes from a person who knows that they are talking about and not trying to sell something. Our whole earth is contaminated and all we can do is try to control what we can where we can. Hope this helps Natalie. I am not clear from it yet as I keep buying stuff that says it is gluten free and I miss something that says its there. So I will keep on trying. I hope you get your answers. If I find anything I will let you know.

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