DebJ14

When I got my results back my doctor sat down with me for an hour and went over the specifics of the diet. He gave me a really good explantion of how the gluten attacks the body as well as web references where I could learn more about gluten free eating. He also gave me a list of restaurants in our area with a gluten-free menu, a list of food items that I could find locally and a list of books that he believed to be excellent resources. He also provided a list of sources of hidden gluten and gave me specific brand names of products that were safe. He also gave me the list of the terms that are often found on products that contain gluten, but you would never know it. All of the information was in a handout so that I did not have to worry about remembering everything he said. He has started a support group for his patients. We get together quarterly for an informative talk on issues relating to gluten (such as other disease associated with eating gluten, nutrition etc.) and everyone brings a gluten-free dish to share and copies of the recipes to exchange. It is a good opportunity to network with others who understand the struggle. Also, when we come across a good gluten-free food we turn in the name of the product, where we found it, and the price to his office. They keep an updated list available to the patients. I would recommend that you suggest the handout to your doctor. I still put mine out if I have a question about something. Debbie

You might want to see about getting an IgG4 antigen specific blood test done. The one I did recently tested for 90 different foods. In addition to being gluten intolerant, I react to milk, beef, pepper, chocolate, vanilla, tea, cinnamon, blueberries, cranberries and yeast plus a bunch of others. When I removed the offending foods all of my remaining symptoms cleared up within days. I still have a leaky gut after one year gluten-free. The doctor believes that in time I will be able to reintroduce many of these items back into my diet (except for the dairy since I also have a true IgE allergy to milk). When I put them back in I will do it one at a time like you do with a baby so that I know whether or not I react. Good luck. I know it can be frustrating and disappointing at times. Debbie

I completely agree with idea of checking for other food intolerances. It is a toss up which is worse, my reaction to gluten, corn or dairy. Also I would recommend testing for nutritional deficiencies with something like the Spectracell test. If your gut is damaged then you are probably not absorbing nutrients which will make you fatigued. Magnesium, iron and B-12 deficiencies are very common and that can make you fatigued. Also, you may be hypothyroid if you have a selenium deficiency. It is necessary for the conversion of the thyroid hormones. But, for heaven's sake don't eat gluten. You will put yourself back at square one. If you stick to fresh, organic fruits and vegetables, organic lean meats and chicken and wild fish you shouldn't encounter any gluten. Processed food is not good for anybody. Debbie

My son was on Plaquenil when he was (mis)diagnosed with Lupus. It made his stomach issues worse. When they realized his diagnosis was wrong it was the first drug they pulled. The doctor said it was potentially very damaging. I had never heard of it being prescribed for Celiac. That may not be an FDA approved use of the drug. Have you considered other food intolerances as a cause of your pain? At the time I was diagnosed as gluten intolerant I had arthritis and chronic tendinitis. The pain quickly went away went I went gluten-free, but returned and I could not figure out why. My doctor put me through a 7 day fast and then I added foods in one at a time like you do with a baby. I started with brown rice and chicken. I did great until I added corn - the reaction was nearly as bad as if I had eaten wheat. I reacted in this manner to almonds, dairy, soy and bananas. Once I cut all of those foods out I was much improved. However, I reached a plateau and would have episodes that were very disappointing. Thanksgiving was the final straw - I cut out all the foods I knew were a problem and still felt lousy. My doctor had blood drawn and they did an IgG4 antigen specific test for 90 different foods. I got my answer - I was reactive to yeast, cranberry, blueberry, beef, milk, chocolate, vanilla, black pepper and cinnamon to name just a few. Once I cut those out of my diet I felt better than I have ever felt in my life. I am on a rotation diet now and at some point in the future will attempt to reintroduce these foods one at a time. For now all my aches, pains, stomach issues and rashes are gone. I mostly eat just fresh organic fruits and vegetables, organic chicken, lamb, pork and wild salmon and tuna. If it comes in a package it is probably not all that good for you anyway. Good luck Debbie

Your problem may not be gluten alone. Many of those intolerant to gluten also have problems with dairy (either lactose intolerant or casein allergy or both) or soy or other grains such as corn. I was immediately better after going gluten-free, but continued to have problems. I had the Allergix IGg blood test for 90 different foods and they came back positive for milk, beef, cranberries, yeast and chocolate. When I cut them out all of the problems (digestive and rashes) disappeared. Good luck with the doctors - they are always looking for horses but gluten-free people are zebras.

If you are interested in really getting down to brass tacks with the lifestyle management then I can recommend Town Center Wellness in Sugar Land. Dr. Osborne is a Chiropractor, but is also the only board certified nutritionist in Ft. Bend County. He is big into testingfor nutritional deficiencies and monitoring progress. He has completely turned my life around in the past year. Debbie