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Cd, Fibromyalghia, Food Intolerances/allergies


Captain Obvious

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Captain Obvious Newbie

Ok, so I'm a diagnosed celiac with years of celiac disease diet - first started in 1999. I'm certain that my diet no longer contains gluten and has not for at least 2 years.

Since going gluten free though I've developed several other food allergies/intolerances - milk, eggs, citrus, various preservatives, etc.

Here's the kicker though - one aspect of the reaction spectrum that my body has to all of these foods is severe bone, muscle pain - I mean crippling that takes 2 weeks to clear and it seems to be getting worse - like scary worse. I got diagnosed with fibromyalghia, but it seems to go beyond that - I experience actual muscle damage - it literally feels like muscles are being torn from the bone even when I make the simpliest of movements. And, in fact, it seems that they are as my injuries take weeks/months to heal.

Anybody else out there like this? Are we looking at some other sort of connective tissue disorder here? Are the other food allergies/intolerances going to fade? Or get worse - they seem to be getting worse... Please don't say see a doctor, you guys are the pros, I haven't met a doctor yet that knows 1/3 as much about this stuff as I do and I'm out of money. This sucks. It was bad enough giving up gluten products, now milk, eggs, and all sorts of other stuff. Oh yeah, I seem to be allergic to just about every sort of pain killer there is so all I can do is moan in bed and pray for sleep. Starting to think I'm some sort of monk or something -


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Hi Captain Obvious,

I noticed no one had responded to your post and as I was reading it the first thing that I wanted to ask was what do the doctors say? Of course then you said not to say go to the doctor, so I'm not sure what to say. It does sound like there is something else going on besides celiac disease. Sure we can heal from the intestinal damage, but that does not make us immune to other illnesses. My son is 7 and has Epstein-Barr Virus (for most of his life-he is in remission) and he also is being tested for Celiac (since I have it and he has always been sickly), as well as being tested for other genetic disorders causing his recurrent fever disease (one of those diseases there is only 180 diagnosed cases world wide!). I think to myself, what are the chances of him having two genetic disorders. But then it would explain his constant recurrent illnesses.

The allergy/intolerance thing is common. It may be that you did not develop the other intolerances after you stopped eatuing gluten, it may just be that they were finally recognizable. See the gluten damage masks other intolerances and once we start to heal your body is able to get the message through that you are eating something else it doesn't like. I am also intolerant to all dairy (casein to be exact) and I am alleric to soy. I suspect I am having a problem with yeast, and tomatoes and potatos cause me joint pain. I am only allergic to morphine, so I guess I am fortunate, but there should be someone out there who can help you figure out what is going on in your body. There are many others here that are intolerant/allergic to many different combinations of foods that you would think anyone should be able to eat, but you never know.

I hope you are able to find out and stop the tissue damage. I'll be praying for you.

God bless,

Mariann

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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
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    • 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. 
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      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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