DQ8 Causes More Than Just Celiac Disease

You say that you are feeling no better on a gluten-free diet. Many of us have found that in order to feel well we need to eliminate more than gluten. I discovered I react strongly to yeast. In fact, when I first went gluten-free I though all yeast breads were contaminated with wheat because of the reaction I had. I have also discovered that I feel best when I eat no grains and no dairy. Have you looked into the possibility that you may be reacting to other foods?

Thanks you for this article and references.

I too had the negative results on my blood work, but my attacks stopped once I went on the gluten free diet. About a year into the diet I found that I also had issues with Xanthan gum. Now two years in, I have begun to struggle with hypoglycemia attacks and extreme fatigue. I was recently put on a structured diet including protein supplements. The attacks have stopped but the fatigue is becoming worse. I've been to several doctors that all say my lab work checks out, but have no suggestions or answers to why I feel so poorly. So, if the new diet doesn't work they are sending me off for more tests. So, I think that celiac can just be the tip of the iceberg. Any suggestions or insight is welcome.

My personal opinion is that if you don't feel any better/get worse/no clinical lab or test results improve on the gluten free diet than gluten is not your problem. I hear of so many "gluten intolerant" people who think they have some form of celiac say "but I didn't start to feel better until I cut out dairy/yeast/fruit, etc. Well, then maybe that was what the problem was...what indicates it would be gluten then? It just doesn't make any sense. Just having the genes for celiac or some symptoms of celiac doesn't mean you have celiac or NCGI. And if you still are getting sick, it's entirely possible that food plays little to no role in your illness to begin with unless allergy or intolerance testing proves otherwise. Do I think that a subset of people with autoimmunity/genes/family history for autoimmunity will improve or be helped by being gluten free? Yes. Definitely. I bet some of those people definitely should most certainly be gluten free. However, I suspect that a lot of people are thinking gluten is the problem when really it's not. I mean, if you don't actually have celiac, and if you don't improve or you continue to be ill, what is the point of being gluten free? Likely there is something else going on that requires testing, not cutting out more foods. Although there are people out there who truly have an immune (IgE, IgA, IgM, etc.) reaction to multiple and many (if not all) foods. But they need to be under the care of a specialist anyway. I know because I am one of those people. I also think people in general eat a lot of junk and processed foods, which have additives that bother some people. It's not necessarily gluten that people are reacting to. I do agree 100% with the author that more research does need to be done.

Having gone undiagnosed or misdiagnosed for 42 years, I'll never know when my Celiac Disease became active. Once dx'd I removed all gluten from my diet and did indeed get worse and was subsequently diagnosed with Fibromyalgia. The endoscopy performed at one year gluten free revealed increased damage/blunting of my villi. I continued to get sicker and sicker until I had maybe an hour of vertical time per day (right when I awoke and there was no food in my body).

I was gluten free two and a half years before I eliminated all possible food intolerances at once to trial them each separately over a six month period. Within three days of eliminating Grains, Nightshades, Legumes, Nuts, Dairy and Citrus I was up out of bed (had been bedridden for over a year) and have continued to slowly improve with the exception of some horrible days during food trial.

I now believe that a lifetime of gluten destroyed my digestive system which led to other food intolerances. Now that I have removed these foods I have new hope that my digestive system will have an opportunity to heal and I will gain some foods back, but never Gluten. If I am incorrect and never get these foods back -- at least I am out of bed, feeling great (most days) and have a life once again.

PS All three of my children and two grandchildren had negative celiac panels, but have all had greatly improved health on a gluten free diet. Two children had to remove a few other foods through elimination...and are also now healthier than ever before. I am certain they were on the same path as me and would have only got sicker as the decades passed.

This probably explains why having one autoimmune disease increases your risk for others. They're all closely related (genetic profile wise). I am Pakistani, positive for the HLA-DQ8 gene. Celiac disease is fairly prominent in South Asia too, and I think it's the only gene that is related to Celiac there (HLA-DQ2 is fairly absent).

Having gone undiagnosed or misdiagnosed for 42 years, I'll never know when my Celiac Disease became active. Once dx'd I removed all gluten from my diet and did indeed get worse and was subsequently diagnosed with Fibromyalgia. The endoscopy performed at one year gluten free revealed increased damage/blunting of my villi. I continued to get sicker and sicker until I had maybe an hour of vertical time per day (right when I awoke and there was no food in my body).

 

I was gluten free two and a half years before I eliminated all possible food intolerances at once to trial them each separately over a six month period. Within three days of eliminating Grains, Nightshades, Legumes, Nuts, Dairy and Citrus I was up out of bed (had been bedridden for over a year) and have continued to slowly improve with the exception of some horrible days during food trial.

 

I now believe that a lifetime of gluten destroyed my digestive system which led to other food intolerances. Now that I have removed these foods I have new hope that my digestive system will have an opportunity to heal and I will gain some foods back, but never Gluten. If I am incorrect and never get these foods back -- at least I am out of bed, feeling great (most days) and have a life once again.

 

PS All three of my children and two grandchildren had negative celiac panels, but have all had greatly improved health on a gluten free diet. Two children had to remove a few other foods through elimination...and are also now healthier than ever before. I am certain they were on the same path as me and would have only got sicker as the decades passed.

I would like a list of the foods you eat because I have been eliminating the same foods over the past decade and am feeling frustrated and hunger about what to eat. Thanks.