Welcome to the forum, @kopiq,
Have you been checked for nutritional deficiencies? Nutritional deficiencies may account for many of your symptoms. Celiac damages the intestines which lowers our ability to absorb essential vitamins and minerals. Have you been referred to a dietician to discuss a nutritionally dense gluten free diet?
You are eating a high carbohydrate diet. You're eating plenty of carbs, but an insufficient amount of B vitamins needed to turn the carbs into ATP, the energy cells use to function. The more carbs one eats, additional Thiamine Vitamin B 1 is needed. The RDA is based on the minimum amount needed daily to prevent disease, not the amount for optimum health. SIBO is often a result of a high carbohydrate diet, and could explain the burping, gas produced by SIBO bacteria snacking on your extra carbs.
Thiamine deficiency symptoms include cramping in feet and legs. Thiamine deficiency is called Beriberi meaning "I can't, I can't!" because of the inability to walk. Gastrointestinal Beriberi symptoms include gastroparesis (movement of food through the intestines slows down), or digestive upsets, diarrhea or constipation, abdominal pain. The gall bladder may become dysfunctional. The pancreas can have difficulty producing digestive enzymes and insulin. Type Two diabetes may occur.
Thiamine deficiency also causes paresthesia, that feeling of numbness or pins and needles. Thiamine deficiency can cause ED and genital numbness. Niacin B3 deficiency causes symptoms in the skin that can be mistaken for psoriasis.
Infections like Covid require more vitamins, especially Thiamine and Vitamin C, to fight the infection.
With malabsorption, all the vitamins and minerals are affected. Thiamine interacts with each of the seven other B vitamins in the energy cycle. Vitamin D can help calm the immune system.
The Autoimmune Protocol diet can improve intestinal health. It can starve out SIBO. The AIP diet is very strict, but eating a diet that is easy on the digestive system allows time for it to heal. Then more foods can be added back in with less chance of a reaction or sensitivity.
You should definitely talk to your doctor about Thiamine deficiency soon. If not corrected promptly, damage may not be reversible, and could be life threatening.
Keep us posted on your progress!
Thank you very much @trents! This is super helpful. The only time I wasn’t sick after my diagnosis was when I was ordering and eating certified gluten-free meals from a company. I did that for a few months right after being diagnosed and then I started to try to figure it out how to cool and eat gluten-free meals myself. I think I’m probably getting low levels of gluten exposure and maybe that’s what’s making me ill. Possibly other things also not helping the situation (like dairy). Anyway this gives me something to focus on to see if it helps. So thanks for that!
Welcome to the celiac.com, @Rejoicephd!
1. "Gluten Free" does not equate to "contains no gluten". According to FDA advertising regulations, it means it cannot contain more than 20ppm of gluten. This is a good standard for most in the celiac community but not good enough for those on the sensitive end of the spectrum. If you find the "Certified Gluten Free" symbol on a package that is even better, indicating that there is no more than 10ppm of gluten.
2. When you are choosing "gluten free" items from a restaurant, realize that it only means gluten is not an intentional ingredient. It does not rule out CC (Cross Contamination) caused by those cooking and preparing the food back in the kitchen who may be cooking it on the same surfaces or in the same pots/pans as they are gluten containing food items and handling it with the same utensils they are handling gluten-containing food.
3. About 8% of celiacs react to the protein avenin in oats as they do the protein gluten in wheat/barley/rye. In addition, some cultivars of oats actually contain the protein gluten. Many celiacs also react to the protein casein in dairy products as they do gluten or they are lactose intolerant. Eggs, soy and corn are also common "cross reactors" in the celiac community but oats and dairy are the most common.
Hi everyone! I was diagnosed with celiac a year ago (they confirmed it on endoscopy following a positive TTG antibody and positive genetic test). I thought the gluten free diet thing wasn’t going to be that hard of an adjustment, but man was I wrong. I’m a year in and still having issues in terms of accidentally glutening myself and getting super sick (I’m starting to think I need to just bring my own food everywhere I go). And also even when I am eating foods that say they are gluten free, I’m still dealing with an upset stomach often. My GI doc said I should avoid dairy as well, and the internal medicine doc said my gut microbiome might be messed up from all of this. I’m just looking for some answers/ideas/tips on what additional things I can do to feel better. Do you all do avoid additional categories of foods beyond just gluten to help alleviate symptoms? Thanks!
If your total IGA is low then the values for the other IGA tests cannot be trusted. They will be depressed.
Celiacs who have the DQ2 gene typically are on the more sensitive side as opposed to those who only have the DQ8. But keep in mind that having either or both of those genes does not equate to having celiac disease as 40% of the general population have one or the other and only about 1% of the general population develops active celiac disease. Genetic typing can be used for ruling it out, however.
Because of the low total IGA, symptoms and the possession of the DQ2 gene, my suggestion would be for you to go seriously gluten free for a few months and see if your symptoms improve. It may be the only way you can ascertain if you are gluten intolerant because of the low total IGA.