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Did This Happen To Anybody Else?


sidelined

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sidelined Apprentice

I'm a possible Celiac victim (no blood work before gluten-free). When I first removed Gluten, I felt AMAZING for a few days, but then regressed into my former symptoms. In the two months since, I've felt what I perceive to be a steady recovery, but without any jumps like that which occurred right off the bat. 

 

Is this immediate recovery followed by only gradual improvements a common experience?


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beth01 Enthusiast

Could it be you are getting gluten from cross-contamination?  Did you clean your kitchen well?  Do you have people in your house that are still on the gluten, making it in your home? It's every where, can be in toothpaste, hair product, makeup, lip balms, pet foods, the most innocuous places.  Your significant other could also be getting you if they eat gluten and don't brush their teeth.

cyclinglady Grand Master

Yes. Everyone is different. Some take months to years to heal. Good luck!

NatureChick Rookie

Yes and no for me. I had a whole list of 40-50 symptoms that went away completely when I went gluten free, some taking days to ease up, others slower and taking weeks to disappear completely.

But it took me a couple months of having some of my pains and some other odd symptoms not ease up, and at times to be worse, for me to figure out that I must also have vitamin deficiencies. Got tested, and sure enough, I had some major ones. Treating them did knock my other major symptoms out.

And I found that I had some new food intolerances that I hadn't had before going gluten-free, so a few more foods were removed from my diet.

 

But I still have odd issues arise from time to time. Some of it I know is related to the damage that gluten did to various organs that is never going to heal. Some of it I still don't understand and continue to do research all of the time, hoping to avoid major problems in the future.

I think one of the things that I have learned through this process is how much I still don't know simply because I haven't stumbled upon the information yet, and how much the medical community still doesn't know because so little research has been done in this area.

GF Lover Rising Star

Hi Sidelined.

 

I'm assuming you've seen your Doctor for a look at your symptoms, you may also want to consider a gluten challenge to do blood testing and endoscope.  You could have any number of issues going on and not necessarily Celiac.  You don't want to leave a medical issue untreated and you also would not want to undertake a medically necessary diet if not diagnosed with Celiac.

 

Good luck with what you decide.

 

Colleen

littleliffy Newbie

I had the same thing happen. I felt good for a week and now, for the past month, I have felt terrible. I haven't been able to socialize, work or do anything because I'm super exhausted, nauseous and weak. The doctor keeps telling me to be patient. It seems like I get a tiny bit better every week but not a lot. How long before I will feel back to normal??

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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