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Should I Be Tested For Celiac Disease?
A MyFibroTeam Member asked a question 💭

I spoke to a friend yesterday who has Celiac Disease. She and I have many of the same co-occurring conditions (i.e. fibro, migraines, endometriosis, IBS, lactose intolerance), and I have experienced gluten intolerance, itchy rashes, and other symptoms. And both of us started having many of these problems AFTER surgery. Now I'm wondering if I might have it, given so many parallels.

My question is: does anyone think there is a benefit to getting tested for Celiac, particularly when the only… read more

posted January 15, 2016
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A MyFibroTeam Member

Definitely investigate into Gluten allergies because if you are in fact celiac you could be destroying your intestines and this also causes lack of nutrient absorption. True celiac disease is very serious so I think you should get tested. If your not celiac then at least you have ruled it out. I have been diagnosed with IBS for over 35 years and when I was younger I had a really bad time, as I got older I started to pin point the triggers and found out I was really lactose intolerant also fresh vegetables I couldn't digest and Pork. Avoiding these triggers has given me so much improvement. I only drink lactose free milk and eat lactose free ice cream on occasion as a treat. I can tolerate small amounts of hard cheese and yogurt so I do incorporate them into my diet as its good for you nutritionally. I avoid pork for the most part, I like it and occasionally cheat but when I do I end up paying for it! I spend my evenings and sometimes part of the next day parked on the white porcelain throne. Sitting on the toilet with severe stomach pain and the dreaded loose stools gives one plenty of time to curse my lack of will power to avoid pork all together. Its so hard to turn away from barbequed ribs. But a good bout of IBS soon reminds me why I need to avoid these foods. Good luck and I really hope your not celiac.

posted January 15, 2016
A MyFibroTeam Member

I'm from Canada. Here we get the blood test and a scope to confirm.
I came back positive with the blood test and inconclusive with the scope. So I kept eating gluten, at the doctors instruction.
My life pretty much fell apart, I got very anxious and had all the vitamin deficiencies. Ended up with nerve damage in the process. It was a horrible time in my life.
5 years later my sister was diagnosed. Then my other sister. Then my mom and brother.
So I stopped eating it. Just to see. And my world had colour again and my stomach stopped hurting within a few days. Not everyone has improvement that fast but I did. The nerve damage is here to stay but everything else took a total 180.
So. If I could do it over again, i would not have waited for the tests to come back positive and I would have saved myself a lot of misery.

posted August 21, 2019
A MyFibroTeam Member

I have celiac. I agree with McD.
There's a big difference between gluten intolerance and celiac. Intolerance you try to avoid it, can cheat eat, etc. celiac is your way of life, watch cross contamination, read labels, eating completely gf if your medicine. Your fibro is painful= pain pills. You take those pills to stay out of pain. Eating gf is the same. It is truly not healthy to eat gf unless you have to. And it's very expensive. I was diagnosed in 2003.

posted January 18, 2016
A MyFibroTeam Member

I would esp if you aren't on disability. Anything they can add to what you have is one step closer to getting accepted

posted January 16, 2016
A MyFibroTeam Member

I feel you should talk to your doctor before changing anything.

posted January 15, 2016

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