u/PlatypusStyle

▲ 5 r/glutenfree+1 crossposts

Excess folic acid or non-celiac gluten sensitivity?

TL/DR: How do I test for excess folic acid vs. non-celiac gluten sensitivity?

I do have problem versions of MTHFR genes. I can dig out my genome if anyone wants to know which version.

Around 1998 (approx. when US fortified foods law went into effect) I started developing fatigue and chronic pain. I also had several first trimester miscarriages. In 2000 a friend suggested I try a gluten-free diet and I went on to have a successful twin pregnancy. I know I took pre-natal vitamins but I don’t know what kind of folate they contained or how much. I continued with the GF diet in part for my own heath concerns but also because my then spouse realized that he had true celiac due to feeling better on a GF diet.Approximately a decade later, I started drinking several Emergence-C vitamin packs per day when I had a cold. I continued because I thought I was doing something healthy but I was feeling worse and worse and even losing weight because my stomach felt so bad. The Eight Most Common Allergens Labeling law came into effect and Emergence-C suddenly started labeling the small amounts of wheat that were in its raspberry flavorings (the one I preferred). I stopped drinking Emergence-C and recovered. At the time I was not aware of my MTHFR genetic variants. Emergence-C still does have a large dose of folic acid and I had been drink 2 or 3 glasses per day.

FYI, Emergence-C no longer adds wheat to their products although I don’t know if it’s ok for celiacs.

I don‘t react to small amounts of wheat/gluten on the rare occasions that I accidentally ingest it. For example, a full meal of something with small amounts of wheat in ingredients list or even an accidental bite of wheat bread or pasta.

There’s recent research on the negative effects of excess folic acid so that made me wonder if I really do have a problem with gluten/wheat or if my problem is with the excess folic acid found in all US enriched grain products.

Anyway, I’m trying to come up with a plan to test whether my problem is excess folic acid or actually gluten/wheat.

My thought is to first get a blood test for folate levels as a baseline (I do take a daily bio-available folate supplement) and then switch to a folic acid supplement and see what my folate blood levels are. If the folic acid is not being properly metabolized then I should see a rise in my blood folate results (my understanding is that the test measures all forms of folate including folic acid)

I know doing this won’t answer the question entirely. The next step would be to start eating non-enriched wheat products and see how that affects me.

I still wouldn’t be able to eat most US products but the idea of being able to go to a country where they don’t enrich their grain products and be able to eat the food is making me giddy! Or drink a real beer maybe!

So does anyone have any thoughts on how long I should supplement with the folic acid before testing to see if it’s building up in my blood?

edit: yes, I know about all the bad things that folic acid can do. I’m doing a small experiment with just myself to see if I’m truly gluten intolerant. I realize that I will likely have symptoms.

edit: I guess I’m hoping for ideas on designing the experiment.

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u/PlatypusStyle — 1 day ago