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Not Getting Better At All


Chanahan-6

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Chanahan-6 Rookie

I am really frustrated and at a a loss of where to go. I was diagnosed back in July with Celiac disease and have cut out all gluten. I was going back and forth from feeling great to making some mistakes, but in the past 3 weeks I have been constantly sick. It goes from diarrhea to constipation with constant bloating, mild discomfort in the stomach and bouts of excessive burping. In the past week, I also cut out dairy which seemed to help but I woke up this morning and am back in pain with no appetite and burping. I went to the doctor about my burping and he said to eat slower...I went back to say I still wasn't feeling good and he said I may have IBS too and told me to start taking Metamucil. Change for a new doctor ASAP! Is anyone else suffering or going through the same thing? Does this ring a bell with anyone that I may be suffering from something else? I hate being so unhealthy and just want to lead a normal life again.


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Skylark Collaborator

What changed 3 weeks ago? You may be getting gluten in a medicine, cosmetics, pet food, or some other odd place.

Bubba's Mom Enthusiast

You may have developed another food intollerance? Keep a log of everything you eat, along with any symptoms. Many reactions aren't immediate..so having a way of looking back can be vry helpful in putting the puzzle together.

I found soy gives me problems in every form now. I used to eat soy nuts for snacks with no problems at all!

dilettantesteph Collaborator

What are you eating? Are you eating in restaurants? Are you eating a lot of processed foods? Might want to try a whole foods diet to see if that helps.

IrishHeart Veteran

These wise people have given you many good suggestions (is it trace gluten? did you change your routine? is it another food intolerance?), but I wonder about the dairy. Try staying off it for a while--like a month-- and see if you improve. Then, try adding it back in slowly.

Metamucil will just clog up the works. :rolleyes:

If you do use it, be sure to drink tons of water. This is what doctors do--patch it with a band-aid instead of figuring out the cause. IBS--a syndrome for a collection of symptoms--is what they conclude when the 15 minutes is up. Sorry, but this is what I was told for years. And when I asked "Yes, but WHY is it irritable?" she had no answer. (Well, I know now.) And guess what? Off gluten and no more GERD or IBS...hmm.

I am POSITIVE I am about as gluten free as can be :) , and I do not eat processed foods, but when I have too much dairy, especially cheese, I get the symptoms you describe.

Also, I sound like a broken record on here, :lol: but probiotics really help heal celiac/leaky guts. Do you take them by any chance?

Hope you find the culprit! I know it is discouraging to have uncomfortable symptoms again, but it could just be temporary. Hang in there.

Best wishes!

  • 2 weeks later...
Gemini Experienced

I am really frustrated and at a a loss of where to go. I was diagnosed back in July with Celiac disease and have cut out all gluten. I was going back and forth from feeling great to making some mistakes, but in the past 3 weeks I have been constantly sick. It goes from diarrhea to constipation with constant bloating, mild discomfort in the stomach and bouts of excessive burping. In the past week, I also cut out dairy which seemed to help but I woke up this morning and am back in pain with no appetite and burping. I went to the doctor about my burping and he said to eat slower...I went back to say I still wasn't feeling good and he said I may have IBS too and told me to start taking Metamucil. Change for a new doctor ASAP! Is anyone else suffering or going through the same thing? Does this ring a bell with anyone that I may be suffering from something else? I hate being so unhealthy and just want to lead a normal life again.

Burping is a symptom of not being able to digest your food all the way....it can be a symptom of low stomach acid or pancreatic insufficiency, which is extremely common with Celiac. I take a digestive enzyme because I started having symptoms like these and it worked wonders. I cannot digest fats well at all...still. Not a big problem as fats are not something you should eat a whole lot of, at least saturated fats, which give the biggest grief. When I do, I take enzymes and no more issues.

If you are careful with your diet and are not eating your shampoo, then most likely it isn't trace gluten. Many people overlook the fact that Celiacs can still have trouble with certain foods even after they heal. I am healed and it's been 7 years but I still cannot tolerate much dairy or animal fats. I cannot digest lamb at all and had to stop eating it. That's OK...cow is good! ;)

In case you are interested in trying this, I use Digest Gold but any good, gluten-free digestive enzyme will do. Take one with your meals and see what happens. It's like night and day for me.

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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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