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Cd, Fibromyalghia, Food Intolerances/allergies
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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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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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