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Finally Getting Somewhere!


Ox on the Roof

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Ox on the Roof Apprentice

So, I don't have an official diagnosis, and my IgG and IgA blood work was negative. But why else would I be doing so well when I am cooking gluten-free at home - for a month now - and then get sick every time I eat out and make "educated guesses"?

After reading a bunch of stuff about McDonald's fries, I decided to give them a go. Within an hour, I started with the upper GI symptoms. I sound like Buddy the Elf after he drank the soda! Pepto Bismol is my friend. (A big THANKS to whoever gave me that suggestion!) Of course, I also had the Bacon Ranch salad with no chicken. So I am not sure exactly what the culprit was, but it was definitely something I ate.

Official diagnosis or no, gluten intolerance or Celiac, WHATEVER...I cannot eat gluten! It's a good feeling to finally get a clue as to what's been wrong with me for almost two years. Now, if I can just learn how to eat out without getting sick!


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mushroom Proficient

Well, can you try not eating out for a while, until you master the diet and learn all the hidden sources of gluten first? Then you can start figuring out how the restaurants can cross-contaminate you :P

GFinDC Veteran

Sounds like you are getting somewhere with your diet changes at home. It doesn't matter a whole lot what it's called, celiac or gluten intolerance, if it makes you sick then staying away from it is the right thing to do. Congrats on getting some food traps figured out! :)

Skylark Collaborator

I've given up on making educated guesses eating out. Either the restaurant has a gluten-free menu or I don't go there.

Ox on the Roof Apprentice

mushroom, I am starting to think that's the best way to go. My family usually eats out once a week with my in-laws. It's like Russian roulette! My family is very supportive, but I've been sick for so long that I hate imposing on them. But my new thought is that it isn't imposing on ANYONE to just have something to drink and maybe a plain baked potato, then eat when I get home.

gluten-free - thanks! It's WONDERFUL to feel better! Today marks one month gluten-free, and after tomorrow I will have survived the two biggest holidays (Thanksgiving was day one).

Skylark - I hear ya! With McD's, well...I don't even like that place, but they have an indoor playground, which is nice for my kids when it's freezing outside. I checked their website before I left and thought I was doing good, but my first bite of French Fry tasted weird to me. After about six fries, I realized that they tasted like McNuggets! I think they were fried together. At least it only lasted that night.

tea-and-crumpets Explorer

I've given up on making educated guesses eating out. Either the restaurant has a gluten-free menu or I don't go there.

I'm pretty much the same way. I have found that I trust chains (PF Changs, Biaggi's) more than I do local places, though -- I ate off the gluten free menu at a local place and got really sick. I feel like chains are more afraid of legal action so they really train their staff. I might be crazy, but it has worked for me so far.

Juliebove Rising Star

We do eat out a lot, but... We eat at the same places. We have food allergies, not celiac. We try to find places that cook the food from scratch (for the most part anyway). We tell them of our food allergies and they cook special meals for us. Often we order side dishes that we know are safe (except perhaps for cross contamination) such as canned or fresh fruit, bacon, cottage cheese, Hormel chili (not scratch, but safe) or in the case of a place like McDonalds, only the prepackaged items like the apple slices.

We do also eat at places with gluten-free menus.


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    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
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      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
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      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
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      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
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