How little gluten is "gluten free"?
January 23, 2020 2:30 PM   Subscribe

Does eating *any* gluten during an elimination trial affect the way I'd feel if I eliminated it completely?

An endocrinologist suggested I go without gluten for 3-4 months to see if it addresses some nebulous but frustrating physical symptoms. I'm not intolerant and don't have Celiac's disease. In his words I'd either feel "better than I'd felt in years" or feel no difference. So far I've been gluten free 99% of the time. I tossed out everything with gluten (yes, soy sauce and deli meat, etc.). I bought gluten free replacements or simply stopped eating a particular food. But, about every four weeks I've had some gluten. First month it was two slices of pizza. Second month it was a bowl of cereal.

Does this amount of gluten negate the positive affects I'd notice, and effectively "restart the clock" on a GF diet's impact? Is there some tipping point that occurs at 3-4 months completely GF? I definitely feel less full after eating a non-gluten variation of a food but in no way do I feel better than I've felt in years after 10 weeks almost gluten free.
posted by cocoagirl to Health & Fitness (7 answers total)
I would expect the periods in between the cheating to be accurate indicators. When I eat something that effects me I usually feel it about 36 hours later and symptoms last for a couple of days. But it depends on the trigger. Pasta at a nice Italian restaurant, or Injera bread, I won't make it out the door.

If you're not really feeling better now, I don't think it's gluten.

What are your frustrating symptoms? Floating diarrhea? Blood in your stool? Sharp pains in your gut or kidney area? Sore joints? Scaly skin spots that start like bad pimples? Mood swings?
posted by humboldt32 at 3:50 PM on January 23, 2020 [1 favorite]

Speaking from what I know personally about this subject for people with Celiac disease, damage to cells in the small intestine is cumulative and different levels of exposure affect people differently. Having a slice of pizza doesn't "reset the clock", but exposure to the same amount of gluten could affect two people with the autoimmune disease differently in terms of resulting symptoms.

This is for people who have this disease. If you don't, it's unclear what benefits a GF diet would give and I can't really speak to the effect of gluten on your system. You might to go back to your endocrinologist to ask for more information about what this diet is testing (empirically speaking).

There are alternatives to elimination diets that can better test if you have Celiac disease, by measuring the blood level of specific antibodies.
posted by They sucked his brains out! at 3:51 PM on January 23, 2020 [3 favorites]

> This is for people who have this disease. If you don't, it's unclear what benefits a GF diet would give

There is definitely an advantage to a GF diet for those who are sensitive to it but aren't diagnosed Celiac. It's a very frustrating condition to have, made even more frustrating by this common misconception.
posted by humboldt32 at 3:57 PM on January 23, 2020 [5 favorites]

It might also be worth mentioning that processed foods that claim to be free of gluten can sometimes also be made in facilities that process wheat and other gluten-containing ingredients. This can complicate a true elimination diet to test for the disease.
posted by They sucked his brains out! at 3:57 PM on January 23, 2020 [1 favorite]

I am not a doctor, but I have some family members with celiac disease and others with some sort of gluten sensitivity that isn't celiac, and my guess would be that if you're not feeling noticeably better by this point - even with the "cheats" - it's probably not the case that gluten is affecting you. That also seems consistent with your doc's observation that you'd either feel better than you have in years, or no difference at all. Seems like you're in the second group, unfortunately.

I have an autoimmune thyroid disorder and some sort of gluten sensitivity that (probably) isn't celiac, and my gluten-related symptoms noticeably decreased within a few days of going gluten-free, and by 3 weeks out I was feeling better than I had in years and years. I've been accidentally glutened a few times since I went on the GFD and in each case, it was an immediate return of symptoms, but I felt normal again within a week. So, it seems unlikely to me that if you haven't noticed a difference after several weeks (and you're getting negative blood tests for celiac) that anything would change if you stuck with it another several months.
posted by iminurmefi at 4:11 PM on January 23, 2020 [7 favorites]

My experience is as iminurmefi. I had extensive testing for celiac disease but came up negative. However I had felt so much better during the weeks I was inadvertently mostly gluten free that after testing was complete doctors agreed it was worth a try. I am very strict and after about three days it was life changing how amazing I felt. If I am ever slightly contaiminated - like a crumb - then I get horribly ill.

There are lots of non-symptomatic people with celiac disease and they find it tough because they are gluten free to protect against an unseen danger. And there are loads of non- celiac gluten intolerants who do it to feel better. But if you are officially not celiac and feel no benefit being gluten free and can even eat a few slices of pizza (the thought of doing that is utterly terrifying to me) then I really don't see what point there is in being on the diet part time.
posted by kitten magic at 2:52 AM on January 24, 2020 [2 favorites]

All of the above is anecdotal. The chemical truth is this: Even 1 gram of gluten can cause inflammation that lasts up to two weeks. Effects of that inflammation can last months -- especially in the gut. I see this all the time: "Oh I gave up gluten but I had a cheat day. I don't feel any better than ever before, but I guess it's not gluten because I stopped except for that bagel on Tuesday."

If you want to try GF, then do it strictly (read labels, cut out even the hidden sources). If you don't want to try it because of Reasons, then don't.
posted by mrfuga0 at 6:07 AM on January 24, 2020 [1 favorite]

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