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New Member.. Need Help! Health Story --> Am I A Celiac?

nutrifoodie

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nutrifoodie Apprentice
nutrifoodie
Posted

Hello everyone!

I

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spunky Contributor
spunky
Posted

Well I read your story and have to say I'm sorry you've been through so many confusing things without answers!!!

I think most people here could relate!

As far as advice... I don't have much. I am undiagnosed, because doctors just exasperate me with all the round and round useless tests and wrong meds, etc. So I diagnosed myself. All I can say is that in me at least, when i finally tried going 100% gluten free (reading every label of everything, cross-referencing all ingredients with lists I got from here and some other places on the net, and whenever there is any doubt whatsoever, pass on whatever food or ingredient that is), I got better in ways right away, but new food intolerances started and a few strange symptoms began occurring, and so my healing was sort of roller coaster fashion. After a whole year, things began setttling down, things were even better after two full years.

So I think if you can't find a doctor who can help you, being totally gluten free might give you an answer, but it might take a while to see all the results.

Sorry I can't tell you more...maybe some others here can.

I think sometimes if doctors can't give you an answer, trying 100% gluten free is the only way to find out... that and a lot of patience.

nutrifoodie Apprentice
nutrifoodie
Posted
  • Author

Thanks for the input spunky. I also think I might be struggling with some food sensitivities that aren't uncovered.

Also, I forgot to mention that the constipation has lead to hemmrhoids.

I still need everyone's expert advice!

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      Recovery from gluten challenge

      By Kirita · Posted

      Thank you so much for your response! I have a follow-up appointment with her pediatrician next week, and also an appointment with her pediatric GI Dr. Your message gives me some ideas for questions to ask the doctors. My daughter went strictly gluten-free in January following her first endoscopy so I’m guessing her diet is pretty solid. She is compliant but also reliant on others to make her food (at school and home) but she didn’t have this problem prior to the gluten challenge when she went strictly gluten-free. It really makes sense to me that the gluten challenge inflammation hasn’t healed and I will be asking her doctors about nutritional issues. I ask for anecdotal stories because the research surrounding the gluten challenge seems to be inconsistent and inconclusive (at least what I’ve been able to find!). Thank you so much for your response!
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      Recovery from gluten challenge

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      While the positive endoscopy confirms the diagnosis, it's important to be skeptical of the idea that your daughter will simply "bounce back" to a pre-challenge state. The gluten challenge was essentially a controlled, prolonged exposure that likely caused significant inflammation and damage to her system; it's not surprising that recovery is slow and that a subsequent exposure hit her so hard. The persistent fatigue is a major red flag that her body is still struggling, potentially indicating that the initial damage hasn't fully healed or that her system is now in a heightened state of reactivity. Rather than seeking anecdotal timelines from others, her experience underscores the critical need for close follow-up with her gastroenterologist to rule out other nutrient deficiencies commonly caused by celiac flare-ups, like iron or B12, and to consult with a dietitian to scrutinize her diet for any hidden sources of cross-contamination that could be perpetuating her symptoms. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
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