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How Much Gluten Is Too Much?


jonahl

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jonahl Newbie

I'm trying to find articles on how much gluten exposure it takes to cause symptoms, as well as time from exposure to symptoms. I have been on the diet for two weeks after being diagnosed. My symptoms are primarily brain fog/ dizziness with occasional GI issues. Twice I have been smacked in the last week. The first time after potato salad from a deli that was supposedly gluten free and the next time from a Baja Fresh taco that was in a corn shell. I'm reading many posts and people are mentioning being "glutened" from corn taco shells that touched a grill that was used for flour shells. Is that really enough for symptoms? I mean two weeks ago I was eating pasta by the pound - can this low exposure really generate the same level of symptoms?

Also, in both cases I started having the brain fog within hours and it persisted for two days. Both times the day after I was wiped out - so tired I could barely keep my eyes open at work.

I appreciate any personal feedback. In addition does anyone have any peer reviewed articles to support this?

Thanks.

Jonah


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zansu Rookie

Sorry for your pain!

As your body detoxes, you will become more reactive to gluten; but you'll be much healthier on the whole.

Some folks react to the faintest amounts, some take a whole crumb :D Some react within moments, some within days. For some the symptoms last for a few hours for others a week or more, even from a small glutening. I react in about 2 hours, and seem to get rid of most symptoms within 2 days. A crumb is enough for me, but I'm not one of the SUPER sensitive, I've eaten codex wheat starch without reaction, but it was a one-shot deal, not over time. I have seen that constant low exposure (starch in a medicine) builds over time in reaction.

Do your best to avoid all gluten, but you will get CCed now and then. Those taco shells may have been prepared by someone who was just handling flour tortillas, you never know.

Nantzie Collaborator

Yep. It's just one of the weird things with celiac. You go from eating tons of gluten, go gluten-free for a short time, and then you can't handle even the smallest amount.

Nobody knows why it happens and I don't know of any research on it, much less any peer-reviewed articles.

When I first found out about all of this, I thought the people here were just taking it too far and being a little too worried about everything. But it didn't take long until, like you, I realized that as bizarre as it sounded, it was totally true.

Celiac is just weird. :blink:

Nancy

missy'smom Collaborator

I got glutened when my son was home on spring break from making a quesadilla for him. I usually make them in the AM for school lunches but am not preparing my own food at the same time so have no problems. Over the break, I was preparing lunch for both of us. We have separate skillets for gluten and gluten-free dishes but this time I got glutened from CC by my fingers. I rinsed them off in between touching the tortillas and lightly dried them with our kitchen towel but it wasn't enough. I should have washed them well and with soap and dried them thoroughly. I was sick with fatigue for 2-3 days. This kind of thing rarely happens to me at home so it was pretty clear and easy to figure out what happened.

If it was a fish taco, be aware that the fish might have a little flour on it. I had a problem with this in a restaurant. Sent the dish back twice and they insisted that there was none but I could see it. I played it safe and watched my family eat their meals and made something for myself when I got home. I was starving. It sucks but that's how much I value feeling well. The fish was prepped before delivery to the restaurant.

I've had a little as slight diarreah for a day from a tiny sip of barley tea to 3 weeks of being completely knocked out from fish that was floured in a restaurant.

Hang in there. It does get much better as you learn to navigate this diet and your body heals.

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    • trents
      But isn't it easier to just take a D3 supplement? Is the D light somehow a superior source? Links?
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      Welcome to the forum, and thank you for sharing your detailed experience. It sounds like you’ve been through a lot over the past several months, and it’s understandable to feel frustrated after navigating unclear diagnoses and conflicting advice. Since you’ve found relief with a gluten- and corn-free diet, it might be worth continuing that approach for now, especially given your current commitments to culinary classes. You could consider working with a knowledgeable dietitian or a gastroenterologist who specializes in food intolerances and celiac disease to explore potential intolerances or other conditions without immediately reintroducing gluten. If confirming celiac disease is important for your long-term health management, you could plan for an endoscopy during a less busy period, ensuring you follow the gluten challenge protocol beforehand. In the meantime, prioritizing your well-being and avoiding known triggers seems like a practical step. Always advocate for yourself with doctors, and seek second opinions if needed—your health concerns are valid. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
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