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Couldn't Tolerate The Gluten Challenge

Swansong

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Swansong Newbie
Swansong
Posted

Hi Everyone,

After being sick with IBS for the past 30 years, a new doctor suggested I might actually have Celiac Disease. By the time I finally got the pre-diagnosis, I couldn't even get out of bed, I was so weak and unable to keep any food in my system. I started my gluten free diet in July 08 and have been off wheat and gluten since then, but although I am definitely improving, I'm still not doing as well as I'd hoped.

My doctor suggested a gluten challenge for a firm diagnosis. Well after being gluten free for 6 months, I started eating wheat again as he suggested. He asked me to eat wheat for 4 weeks prior to the endoscopy, but I only made for 3 days and then I was flat on my back again. I stopped eating the gluten and opted not to have the test done.

I am wondering how many people here have actually received a formal diagnosis, and how many like me, have gone gluten free without it.

I'm glad to have found this resource.

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mushroom Proficient
mushroom
Posted
Hi Everyone,

After being sick with IBS for the past 30 years, a new doctor suggested I might actually have Celiac Disease. By the time I finally got the pre-diagnosis, I couldn't even get out of bed, I was so weak and unable to keep any food in my system. I started my gluten free diet in July 08 and have been off wheat and gluten since then, but although I am definitely improving, I'm still not doing as well as I'd hoped.

My doctor suggested a gluten challenge for a firm diagnosis. Well after being gluten free for 6 months, I started eating wheat again as he suggested. He asked me to eat wheat for 4 weeks prior to the endoscopy, but I only made for 3 days and then I was flat on my back again. I stopped eating the gluten and opted not to have the test done.

I am wondering how many people here have actually received a formal diagnosis, and how many like me, have gone gluten free without it.

I'm glad to have found this resource.

Hi Swansong, and welcome to the forum.

Nothing! could have convinced me to resume eating gluten to get tested. The results of being gluten free were good enough for me. I don't give a hoot what the tests could have showed. You will find there are quite a few of us.

rinne Apprentice
rinne
Posted

Hi and welcome. :)

Add me to the list, the day the gastro suggested celiac as a possibility was the day I quit all gluten. I had known for years I had problems with bread and avoided it but I hadn't understood about gluten. The endoscopy was scheduled for five months after that and there was no way I was ever going to eat gluten again so I passed on it.

If you have been diagnosed with IBS for thirty years then you may have damage, it takes time to heal.

Is your doctor checking your vitamin and mineral levels, quite likely you will need to figure out how to bring them up and sometimes adding supplements doesn't work so well when our digestion is challenged. I suggest high quality supplements that come in a liquid form, B vitamins you can get through shots and if you have no energy that could make a huge difference.

I am glad you finally found a doctor willing to test for celiac, there is a strong possibility that you may have had it all along and not IBS which some say is simply a doctor's way of acknowledging, "I Be Stupid". :lol:

The blood tests for celiac are notorious for not diagnosing it. :o The endoscopy also may miss it as the damage may be spotty, the question is do you feel better when you don't eat it and it seems pretty clear that you do. :)

Swansong Newbie
Swansong
Posted
  • Author

Thanks for replying! I stayed up very late last night reading some of the topics on this FORUM, and it's nice to hear from others who have the same condition. When I first became acutely ill last July, I was terrified that I had crohn/colitis, because my symptoms were so similar. My son, who is now 30 years old, had his colon removed in 2003. He almost died from blood loss and infections, so I have seen firsthand the devastation of that disease. I was kind of relieved when they ruled out those diseases for me, but Celiace Disease is no picnic either.

I am currently investigating supplements, and appreciate the input about liquid supplements.

Gfresh404 Enthusiast
Gfresh404
Posted

Add me to the list as well. First year of college got really sick, lost almost 30 pounds, I was already a little underweight, 6-2 and 160lbs. Saw a GI, thought it might have been Celiac, so he tested for that. Before I got the results I went gluten-free and noticed some improvements but immediately stopped that after finding out the tests were "negative" for Celiac. If only I had known what I know now. Then had Endoscopy, no damage was found. After two months of messing with my diet, I started eliminating my problematic foods. Started with dairy and then eventually wheat and finally gluten. 6 weeks later of being gluten-free I had the full Celiac blood panel, negative of course. And they looked for DQ2 and DQ8, both negative again.

So regardless of what any test says, it is important to listen to your body. If gluten-free works for you, keep doing that, I know I will.

Keep in mind that our knowledge about this condition is still very limited.

caek-is-a-lie Explorer
caek-is-a-lie
Posted

Count me in for the non-diagnosis. I wouldn't be able to tolerate a challenge. But that's ok because my doctors take my gluten intolerance seriously even without a formal diagnosis.

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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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