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Getting Re-tested?


Kimaire

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Kimaire Newbie

I'm 25 years old and have had "stomach problems" for most of my life. Generally it's been diarrhea with a little constipation. About 4 or 5 years ago I went to a gastroenterologist to make sure it was nothing serious. He decided to do a colonoscopy. Looking at the bloodwork beforehand, he said I showed signs of possibly having celiac disease, so threw in the endoscopy. The end result was that he couldn't find anything, so I was diagnosed with IBS and likely lactose intolerance as well.

I can't say I've really done anything diet wise to prevent symptoms since then. Generally I just limit my dairy products to times when I know I'll have easy access to a bathroom for the next few hours. My thought has been that from what information I can find, neither IBS nor lactose intolerance lead to anything more serious, so if I want to suffer for 5 minutes of good food, it's my pain.

However, in the past few months, I feel like it's been getting worse. I have a lot more frequent constipation (with sometimes intense pain). And whereas before I could go a month or so between having bouts of stomach issues, it seems like now I'm just constantly switching back and forth between diarrhea and constipation, sometimes daily. I've always questioned the IBS diagnosis, as I've had people tell me that's just the name for "we can't figure out what's wrong with you." So I started wondering recently if maybe it could be celiac after all, and the damage just wasn't there at the time to be seen with the endoscopy.

So that long history is basically me wondering if it seems worth it to go back and get tested again.

Thanks


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happygirl Collaborator

It may first be helpful to get a copy of your bloodwork and biopsy, and see if you were properly evaluated for Celiac. Sometimes doctors don't order the right tests, or misinterpret the pathology report.

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    • trents
      Understood. And don't beat yourself up about this. Many are in the same boat as you, having experimented with the gluten-free diet before getting formerly tested. It is a logical, common sense approach when you don't have the knowledge about how testing works or you don't have the healthcare resources to afford testing. And some experience such severe reactions to gluten that it is impossible to get through the gluten challenge in order to get tested. So, they must live with the ambiguity of not knowing for sure if they suffer from celiac disease or NCGS. But at the end of the day, the antidote is the same for both. Namely, life-ling abstinence from gluten. Recently there was an article on posted on this forum about the develop of a new testing method for diagnosing celiac disease that do not require a gluten challenge. It is still in the developmental stage and probably years away from becoming main streams even if it pans out. But there is hope at least.
    • Dema
      Ooh thanks for all the info I'll check them out, though I may not be functional after 6 slices for 6 weeks 😅
    • Dema
      alright thank your help! 🤍
    • Scott Adams
      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      Your experience is incredibly common and frustrating for many in the celiac and gluten-sensitive community, and it's especially challenging with the added layer of healthcare disparities for people of African descent. A negative endoscopy and blood panel, while the gold standard, are not infallible and can miss cases, particularly if you weren't consuming a significant amount of gluten leading up to the tests (the "gluten challenge"). Your dramatic improvement on a gluten-free diet is the most critical piece of evidence here—your body is giving you the answer the tests could not. The symptoms you're describing now, especially the dyshidrotic eczema and blister bumps, are huge red flags for a gluten-related disorder, and your GP dismissing the possibility of dermatitis herpetiformis without a biopsy is a significant oversight. Requesting a new dermatologist and specifically asking for a skin biopsy next to an active lesion (not on it) is the absolute best next step. In the meantime, documenting your symptoms with photos and a food/symptom diary will build a powerful case for yourself. While the financial burden of a gluten-free diet is very real, your health is the priority; perhaps focusing on naturally gluten-free whole foods like rice, beans, and vegetables, rather than expensive processed substitutes, could be a more sustainable path forward until you can get a definitive opinion.
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