Ongoing coeliac symptoms after years of gluten free diet
I was late diagnosed coeliac at 24. I felt great after going gluten free. 6 months in I found the fatigue creep back in. Followed by stomach upset and bloating. Also with my acne coming back,random rashes, headaches,eye blurrness ,random dizzy spells and such. I hadn’t been glutening myself and even went to double check my ANA levels which have been normal . The symptoms have persisted for nearly 2 years now . All my bloods are perfectly fine. Been tested for thyroid issues, ms and sibo. Anyone experience this?
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Having Celiac myself I do continue to have stomach issues. I take Dapsone for another condition caused by this which has been under control since I am gluten free. Celiac fog yes is still prevalent but only slightly. I feel 100 times better now. My blood work has never been fine though. My IgA is off the charts but that is due to SMM and having celiac together.
I don’t have celiac disease - but I am gluten intolerant and have miserable side effects if I eat anything with gluten. I have other food intolerances as well- I cannot eat dairy, or nightshade plants like potatoes and tomatoes and bell peppers. I find that I feel better if I also avoid all grains- corn, rice, rye, etc.
If you try an elimination diet you will be able to see which foods cause unpleasant reactions for you. I have a limited diet but it is worth sticking to it for me since I very rarely have intestinal problems now and I feel good most of the time. After several years of feeling crummy I am happy to stick to a diet that keeps me feeling good.
I wish you good luck in finding a solution that works for you.
Think of what might have changed after 6 months, your food choices, maybe stress on the body (virus or trauma).
Many of us can’t tolerate oats, even the safe ones. Why I don’t know, the bad grains of wheat barley and rye turn into …’and sometimes oats’. Beans can be tricky when healing, some are rotation crops that include the bad 3. Cross contamination is a thing, knowing the facilities that products are processed in can be essential to figuring out a culprit.
The one mistake we all make is thinking gluten free junk food is okay. Sure it might not affect us right away but the thing is we need very nutritious foods and lots of it to heal years of villi damage.
Food becomes our medicine, it can take the joy out of life a bit, but it is a noble path to be on. I am especially strict, I only eat foods I have endlessly vetted and prepared in my kitchen by me.
All of my kitchen everything got replaced. Pans, dishes, utensils…no plastics. Only safe foods are allowed in my house, nobody has an issue keeping me alive and well.
I pretty much eat foods that are not processed, real food meant for humans.
All of this took awhile to figure out, with the hundreds of symptoms of celiac we all take a unique path. Some can eat out and not feel symptoms or damage, but it is there more than likely. It is important to not judge foods by how we feel after eating, the symptoms might be subtle. Villi damage really cannot be seen, but it happens whether we acknowledge it or not.
You could also be gluten sensitive (along with celiac sprue) which opens up questioning gluten in all grains.
Be patient with yourself, be diligent and remember there are much worse autoimmune diseases, this can be quite easy once it is figured out.
I have celiac. I was diagnosed with hypothyroidism as well. I had the same symptoms and went gluten, dairy and sugar free. I felt fine for a while and then my gastro issues became worse. I cut out all high FODMAP foods. This worked for a while as well. I began to add certain foods back into my diet and the symptoms unleashed on me. I was then diagnosed with Autoimmune Pancreatitis. Steroids helped my symptoms along with Rituximab infusions. Request an igG4 blood test for AIP.
Several years ago I attended a health library presentation on celiac disease. The specialist doctor giving the presentation gave this interesting example: She had a patient that was doing everything right but was still having problems. They finally determined that a multivitamin this patient was taking had gluten in it, and this proved to be the source of their problem!