I fall into the category of gluten sensitive.

About 7 years ago, I was eating wheat 3 times a day. I had Cream of Wheat for breakfast, a sandwich for lunch, and pasta for dinner. I thought I ate so healthy. I noticed that I started having a lot of loose stools and diarrhea. Food came out the same way it went in. I ignored it until I started getting weak. I did the CDSA test thorough Great Smokies Lab (now Genova), and everything was negative. My doctor then wanted me to do an elimination diet, which seemed impossible at the time. My chiropractor offered to do muscle testing for food sensitivities. That seemed much more reasonable and easy. Gluten was the major offender. Every gluten grain was a loser. Some types of rice were too, but not all tested poorly. All the other major allergens at the time were fine.

I cut down on my gluten a lot, but still saved my cheats for cookies and desserts. My digestion also got better without the gluten. I did this for years, until last September when a doctor wanted to do surgery on me to remove uterine fibroids. I embarked on a journey to heal my fibroids naturally. I again tried muscle testing with an acupuncturist. Dairy, corn, wheat, spelt, oats, and quinoa all tested negative. I cut them all out. It wasn’t easy, but I was desperate. Strangely enough, rye, barley, and kamut tested ok. I still avoided rye and barley, but tried the kamut, which proved to be a loser.

This February, I saw a talk by a dietician on gluten sensitivity and celiac disease. She had a list of diseases that have been linked to gluten sensitivity, including some in my family – Asperger’s syndrome, Sjogren’s syndrome, and lupus. She also gave a reference to a lab that tests for the genes for celiac disease & gluten sensitivity called Enterolab. My aunt had told me not long before that that her chiropractor had recommended that she give up gluten as part of her treatment for her Sjogren’s syndrome and lupus, and she felt better when she didn’t eat it. Because I was worried a genetic link, I looked up Enterolab on the internet and ordered the gluten panel. All my results were in the normal range for gluten, casein (which I seem to be ok with, just not the dairy), and malabsorption. This was not surprising since I had been off gluten and dairy for 7 months. However, I had two identical copies of this mysterious DQ1 gene (HLA-DBQ1*0501,0501) that’s supposedly linked to gluten sensitivity. I started researching it on the internet, and found BrainTalk. I asked questions about DQ1 genes, and people were telling me their stories about their experiences with the DQ1 genes and how it causes trouble, especially neurological problems. I had found the right place.

I cut out all hidden forms of gluten, but I was still having digestive problems. I’ve since found out I’m intolerant to soy and most nuts and seeds. Pine nuts seem to be the most tolerable. I also found out that I have bacterial dysbiosis, and a low SIgA. So, now I’m wondering if I’m IgA deficient? I wouldn’t be surprised if I am, as I had a lot of colds and ear infections the first two years of my life.

There are a lot of foods that I can’t eat now and going out to eat is nearly impossible. However, there are silver linings in the clouds. I eat A LOT better than I used to. I cook almost all my food, or I get it from Whole Foods, which seems to be one of the few places I can tolerate prepared foods. So, I’ve become a better cook and have found lots of good new recipes. I don’t have to take as many vitamins because I’m either absorbing my food better or I’m just eating more nutritious food in general. Also, I don’t think about suicide anymore and I’m rarely depressed anymore. The suicidal thoughts were not anything serious, but more like dark thoughts I learned to recognize as something annoying and not anything to act on. One more thing, I seem to have less problems with muscle pain in my back and neck pain. I have some arthritis in my lower cervical vertebrae, and I had been looking into ways of treating it with diet along with everything else I had been trying to do for years. I’m only 40, but I have had some serious muscle spasms and neck pain since I was 27, which is related to my scoliosis, but exacerbated by diet, I believe, as well.

I have days when I question if I’m really intolerant to gluten and if the whole DQ1 gene thing is significant. I wish there was more research on this, but until then, I’m not taking my chances!

Claire