Long COVID and gluten sensitivity

I have Celiac and what you described is exactly what I experience immediately after consuming gluten. Most vegan meals and products are wheat based so I can’t imagine. Today I made a sandwich with Schar’s gluten free sour dough bread, it fell apart. ☹️

There are a few GF breads that are closer to "real" bread. Canyon Bakehouse loaves are good. It is best to toast GF breads before you use them in a sandwich; they are less crumbly. GF breads freeze well. Another option is to use GF waffles (toasted) for sandwiches. There are likely other brands, but I mostly make my own GF bread (even breadmaking machines have GF options now). The National Celiac Assoication has food options (and recipes).

We are in similar situation with my 13 yr old. Had covid in march 2022 and unsure if he caught it again but he is now severely intolerant to gluten with celiac testing negative. He gets stomach aches but also significant lethargy , weakness and headaches about 30 min after eating gluten . He also gets some vague shortness of breath and asthma like symptoms. For about 2 months this year he had anemia and low white blood cells but that has resolved although his symptoms are persisting. He has been tired, not himself, irritable and not able to gain weight . I am really worried. Doctors dont seem to know what is going on either.

That is scary. Not being able to eat what peers are is also emotionally isolating. If you haven't tried this, you could check with a nutritionist about an elimination diet to see if he is sensitive to any other foods. I was likely gluten intolerant for decades before it morphed into celiac, after I caught H1N1 flu 14 years ago. My pre-celiac symptoms were mostly bloating, rashes, reflux, fatigue, and neurologic problems . As with celiac, one needs to be gluten free, and gluten is hidden in so many things. If you have not, you might try things that are labeled gluten free for awhile, to see if he is getting cross contamination. I got a new toaster and cutting board after celiac; a small crumb of bread can cause an autoimmune reaction. The National Celiac Assoc site has info on gluten free foods, places to eat, and such for celiac and gluten intolerant people. The findmeglutenfree app also has places to eat. About 30-40% of people have the HLA-DQ2 and/or DQ8 gene, and in ~2% of them it triggers celiac, the majority of whom are undiagnosed.

Thank you so much for sharing. We have been doing gluten free as much as we can and he is significantly better. This weekend we were away for my daughters soccer tournament so are in restaurants and even though we avoided the easy stuff like bread etc I believe he had gluten somewhere significant and he crashed.

He also seems to get wheezing and dry cough in addition to fatigue when he has a lot of gluten. We have seen a naturopath and did some allergy sensitivity testing. He is also milk intolerant and intolerant to egg whites but gluten / wheat was more severe. M

I will keep working on this. Just happy to see that I am not imagining things..... and the link to Covid infection triggering all this could be true. Sometimes I feel we are imagining things.....😢

It takes a year or two to figure out what and where is safe to eat, or not. It takes time to get used to reading every ingredient. I tell the servers and chefs that I have celiac, and if it doesn't feel safe I don't eat (I always carry protein bars). If servers use the same utensils for a pot of wheat as gluten free pasta, that is enough for a reaction. Using the same pizza cutter as well. Some cities have celiac/gluten intolerance clubs that include kids/teens. It is nice to be able to eat out with others and not be afraid of getting sick. Gluten intolerance/celiac can be as hard emotionally as physically.

Yes, same. I was recently told or maybe they told me before. I don't remember very well either. Have you noticed any sort of difference?

If someone is gluten intolerant or has celiac, going GF makes a huge difference in how you feel and in your health, although a few people are asymptomatic with gluten exposure. Some people also have difficulty digesting the complex gluten molecules, particularly as we age. I noticed the change to my GI tract and arthritis a few days after going GF, but long-term damage such as reflux and skin rashes took a few months to disappear.

I became allergic to wheat. I have autoimmune disease which leaves me with multiple environmental sensitivities. I had covid three times last year. After the first I started breaking out in hives. I realized it was wheat. Also found out red meat causes problems. I’ve cut them out and have been much better especially after treatment for small intestine bacterial overgrowth.