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Non-celiac Gluten Sensitivity?

Headache-free

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Headache-free Newbie
Headache-free
Posted

Hi, I am new to this forum. I have been suffering from severe headaches, pancreatitis of unknown origin and demyelinating disorder for several years. All of my gluten blood test panels were negative and endoscopy was normal. My naturopathic doctor suggested that it still might be worth trying a gluten free diet, so i did. I attempted the gluten free diet as a last resort, as my headaches were making me suicidal. I also had severe anxiety. With gluten elimination my headaches are down to once every other week vs. every other day and my mood is much better. I am sure, many people on this forum have similar situation... Why are the tests negative, if gluten elimination is obviously therapeutic in cases like mine?

One more thing: The day before yesterday i had an Indian tofu dish and started getting headache immediately along with the stomach ache. does tofu have gluten in it?

Thank you in advance

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Mother of Jibril Enthusiast
Mother of Jibril
Posted

You might want to read the book "Dangerous Grains." Headaches have a lot of different causes, but in the right person (for example, someone with the DQ5 and/or DQ6 gene), a gluten-free diet could help. It's very possible that you don't have celiac disease and will never test positive... yet a gluten-free diet is the solution to your problem. There's still SO MUCH research going on! Last weekend I went to urgent care (I had the stomach flu) and the doctor was telling me how much the knowledge about autoimmune disorders has grown since he went to medical school. Twenty years ago if you had something like Hashimoto's (thyroid) or type I diabetes (pancreas) or Chron's (intestines) they just treated the symptoms involving that organ as best they could... the underlying cause was not really considered because so little was known.

So... good for you if you figured out something to relieve your symptoms!! Now you just have to wait for the medical research to catch up ;)

ps - Welcome to the group. You'll find you're not alone.

The Fluffy Assassin Enthusiast
The Fluffy Assassin
Posted
Hi, I am new to this forum. I have been suffering from severe headaches, pancreatitis of unknown origin and demyelinating disorder for several years. All of my gluten blood test panels were negative and endoscopy was normal. My naturopathic doctor suggested that it still might be worth trying a gluten free diet, so i did. I attempted the gluten free diet as a last resort, as my headaches were making me suicidal. I also had severe anxiety. With gluten elimination my headaches are down to once every other week vs. every other day and my mood is much better. I am sure, many people on this forum have similar situation... Why are the tests negative, if gluten elimination is obviously therapeutic in cases like mine?

One more thing: The day before yesterday i had an Indian tofu dish and started getting headache immediately along with the stomach ache. does tofu have gluten in it?

Thank you in advance

Tofu doesn't have gluten in it. It's possible that they used soy sauce (which contains wheat) for some reason. It's also possible that you're sensitive to soy. You may wish to consult an allergist to be on the safe side.

You may also want to take B12 supplements, as you're probably years or decades low, at least if you're celiac. Other nutrients we can't absorb or which leak out include magnesium, calcium and iron.

I don't think you'll find a lot of people here who aren't frustrated with the low importance the medical community (particularly in the US) puts on gluten, gluten sensitivity and celiac disease. But all we can do is be happy we've found a solution, even if many of us have to find it ourselves.

Welcome to the board, and to the tribe.

Mother of Jibril Enthusiast
Mother of Jibril
Posted

BTW... tofu does not have gluten, but you do have to be careful about cross-contamination (from the bread) if you eat in a restaurant. I prefer to eat Indian food at home... there are tons of companies making microwaveable packets of sauce. You just heat it up and pour it over rice.

Another thing to consider... you might have a problem with soy too. Very common!

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      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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