Celiac Patient Misdiagnosed With Fibromyalgia

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Last month I wrote about how Celiac Disease can be misdiagnosed as ME/CFS and why this happens. Just last week I found out that a friend of mine who has been suffering terribly for years and was diagnosed with Fibromyalgia just found out that she actually has Celiac Disease.   Everytime I would see her she would talk about how bad her migraines were and how daily she was taking more and more pain medication to try and keep the pain at a tolerable level so that she could work. 

She had at one time had the blood test done to see if she did indeed have Celiac Disease but that test came up negative.  It wasn’t until she had the endoscopy and biopsy that a diagnosis was made.  She said the doctor said her intestines were in terrible shape from the severity of her Celiac Disease.  Ever since she was diagnosed with Celiac Disease and once she was off of gluten products for a couple of  weeks the migraines went away.  She also said that a lot of her body pain that the doctors said were coming from Fibromyalgia has also improved.  Her physician told her that it would probably take close to a year to notice a full improvement; however, the improvement she’s experienced in just a few short weeks has been remarkable.

If you are a Celiac Disease patient who at one time was misdiagnosed with another illness, please comment below!  I am still thinking about getting the biopsy test done to see if I have Celiac Disease or not.  I have headaches every day and nothing I do seems to help them.

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Comments

  1. I was recently diagnosed with Fibromyalgia following a work injury of carpal tunnel/epicondylitis (elbow inflammation). I also was diagnosed as a teenager with Chronic Fatigue Syndrome. Both conditions run strongly in my family. I have been working with a nutritionist and I believe I have Celiac disease. After all of this Fibromyalgia started, I drank malted milk (made with wheat and dairy) and had an immediate, strong reaction of nausea and phlegm, much stronger than I’ve ever had to dairy alone. In trying to eat healthier, I increased my intake of whole wheat and noticed the following within one day: after eating a whole wheat bagel I had elbow pain equal on both sides; after eating just one piece of whole wheat bread I got so tired I had to take a nap; after eating whole wheat pasta my neck and shoulders stiffened and became very painful. When I discussed this with my nutritionist (who specializes in working with people who have Fibromyalgia and who had Fibromyalgia herself in the past) she said that she suspected a wheat intolerance and that most of her clients have one. She herself gets very tired after eating wheat. I talked to my doctor about testing for Celiac disease and she said the test can turn back a false negative and so she suggested just going gluten-free and see how that makes me feel. I’ve been gluten-free for about a month (along with following the Hay’s diet for better digestion/nutrient absorption, taking whole food vitamins and using meditation cd’s with positive affirmation statements) and I do see the symptoms of all of my illnesses improving! I still have a ways to go but am very encouraged to see improvement. Since Celiac disease is strongly genetic, I have talked to other family members with CFS and FMS and they plan to be tested for Celiac. Other reasons I feel this is what I have: when I had CFS as a teen, my doctor gave me B12 shots (which would bypass the digestive system) and they made me feel not just better but absolutely wonderful. As soon as the B12 was out of my system I went back down again. Also, when first diagnosed with FMS recently I tried Magnesium that is absorbed through the skin (also bypassing the digestive system) and that really helped my muscles relax. In my opinion, it really can’t hurt to try a gluten-free diet and see if it helps you so if you suspect a wheat intolerance I’d go ahead and try the dietary changes. If you do care about a doctor’s diagnosis, you can be tested before going gluten free to see if the test comes back positive. Good luck! I hope you find what is triggering your headaches so that you can feel better soon.

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