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Post Diagnosis, Recovery & Treatment of Celiac Disease

Discussions related to the recovery process after you've been diagnosed.


8,720 topics in this forum

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  • Recent Activity

    1. - MomofGF replied to MomofGF's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Not sure if this is Celiac or just a gluten-free intolerance

    2. - trents replied to damnyoureyes's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Elevated B12

    3. - StrongerThanCeliac posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      2 Separate Glutenings - Recovery Timeline?

    4. - damnyoureyes posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Elevated B12


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  • Posts

    • MomofGF
      @trents @Scott Adams I want to thank you both very much for putting me at ease with your replies. I am making an apt with her doctor this week but all my worries of it being more have dissipated. This is all new to us and I think she originally had it from 2021. She lost 20 lbs because it felt like whatever she ate caused a crazy reaction. She was bloated, would have severe diarrhea and/or vomiting and it was a year of testing and nothing coming out of it. However celiac was never a thing that she was tested for. Also I just realized, my dad had a bathroom time when he would come home after night shift to poop. It was diarrhea every time and it never occurred to me that maybe it could be a reaction🤷‍♀️🤷‍♀️ I am going to ask my mom why that was a thing. He is dead now, so testing is not an option.  These answers really helped me out and I truly appreciate your help ❤️❤️
    • trents
      Welcome to the forum, @damnyoureyes! Your elevated serum B12 levels are because you supplemented with B12 and would not be due to malabsorption from celiac disease. Malabsorption from celiac disease would give the opposite effect. Were you ever tested for B12 serum levels before you started supplementing with B12? I understand you were trying to find a solution for the fatigue you were experiencing but there can be many causes for fatigue besides B12 deficiency.  Low vitamin D serum levels is a chronic problem in our modern world as most people live and work indoors. And, of course, if you live in a climate where there aren't many sunny days this is exacerbated. But certainly, low serum D levels is a classic symptom of celiac disease as well. There are specific antibody tests for celiac disease and I suggest if you suspect you have this condition you request testing from your physician. You would need to be eating at least 10g of gluten daily for several weeks before the blood draw. That's the amount of gluten found in approximately 4-6 slices of wheat bread. If you decide to pursue celiac antibody testing, make sure you request your physician includes the "total IGA" test order along with the "tTG-IGA". Total IGA testing checks for IGA deficiency. If you are IGA deficient it will skew other IGA tests down toward the negative range and can create false negatives.  
    • StrongerThanCeliac
      Hi, I had a lot of alcohol last week. And I believe I was glutened on Monday (10/28) and Wednesday (10/30). I was drunk most of the time during this period - so it must’ve been a delayed reaction. When I stopped Thursday (10/31), I noticed the gut pain and it has gotten worse. Even today (11/3), I’m having celiac symptoms. My friend had made turkey and potatoes. He said it was gluten-free, I was too drunk to ask more questions. Come to find out, he used great value garlic and onion powder which “may contain traces of wheat and soy.” Usually, a single glutening takes me about 6 days to recover. Do you guys think it will take longer since it was 2 separate days out of 3 or about the same?    
    • damnyoureyes
      Hi everyone, newbie here! I've never been diagnosed as celiac but have had digestive issues for most of my life - GP many years ago said it was irritable bowel syndrome, so a nice generic label for it. I've been taking B12 supplements (1000mg daily) for about 18 months now - they were prescribed after blood tests ordered due to fatigue came back low. I had my bloods done again last week because the fatigue improved slightly a few weeks after starting the supplements but has come back since, along with dizziness (I had vertigo for six months earlier this year), shortness of breath & palpitations. GP was concerned about aneamia, as it runs in my family, so she ordered full bloods & has also requested intrisic factor antibody tests to see whether I can absorb the B12 properly from tablets or whether I'd need injections. The IF test result hasn't come back yet, but my FBC came back normal except for slightly low VitD and elevated B12, so presumably anaemia isn't the cause of my symptoms. Some of the key results (as far as I understand them!) are... *elevated* Serum vitamin B12: 1131 ng/L (Normal range: 187 to 883) *normal* Serum folate: 3.7 ug/L (Normal range: 3.1 to 20.5) *normal* Serum ferritin: 26 ng/mL (Normal range: 20 to 235) *normal* Serum iron level: 13.9 umol/L (Normal range: 9.0 to 30.4) Maybe it's a bit random that I'm asking about this here, but I'm trying to get as much info as I can before I go back to my GP to discuss the results (I'm due an ECG next week to check for any heart issues first) and celiac disease is something that has cropped up a few times in my research on B12, so I'm wondering whether elevated serum B12 after supplementing could be a possible symptom? Most things I've read are about B12 being low due to malabsorption, rather than being elevated, so I'm just trying to make some sense of it and figure out whether there are any tests etc that I should push for when I go back to my GP. Sorry if this didn't make any sense! (And FWIW, I eat pasta probably four times a week - white, wholewheat, spelt, but all gluten, so I'm very much on the oppostite of a gluten-free diet!) Thanks for any insights :)
    • sh00148
      Just to update you all, my daughter had her appointment and I was thoroughly impressed and satisfied. Her coeliac results were the highest possible so she only needs a further blood test, which they did there and then to confirm there’s been no lab mix up. The doctor was convinced that the constipation was a result of the coeliac and felt that she may not be impacted, just slow moving. He felt the new diet will fix the constipation among many other things. I’m so relieved! Thank you for your support.
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