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Overlapping symptoms of FMS and celiac
5 Replies
January - May 22

I found a really good website tonight - Celiac Sprue Association. Anyone who is interested in learning about gluten might want to google and read up. If you click on the information about celiac disease, and expand to the larger page with more symptoms, it is amazing how many of them overlap with fibromyalgia!

97% of celiacs are currently undiagnosed. Just some of the problems: depression and irritability; food cravings; back pain; IBS symptoms; hypotension; lack of fat padding on the feet (!); muscle cramps; weakness and fatigue; bone pain… sound familiar??

(I've mentioned before, the book Dangerous Grains has about 5 pages of symptoms linked to gluten intolerance! Some are things you wouldn't believe, like prematurely gray hair!)

In addition, the website notes that celiac is diagnosed more in women than men; can develop at ANY age, and can be triggered by things like surgery, viral or bacterial infections, pregnancy, or other stressors; there seems to be a genetic predisposition (some of the genes have been identified).

Sounds a lot like fibromyalgia - except we haven't had our genes researched yet!

Anyway, going gluten free sure helped me! If you do have celiac disease and don't follow the diet, the consequences can be severe. You will develop malnutrition and many diseases, like diabetes, osteoporosis, and cancers are linked to celiac and gluten problems. There is one very effective treatment to regain your health: stay away from gluten!


Cher0208 - May 24

Hey January,

Going gluten free has helped me so much but lately I have had such a hard time staying away from it. Most of my symptoms have returned. My bf read up that for people with celiac or even severe intolerances that gluten the size of an 1/8th of your pinky nail can cause a flare up that will last 2 months. It's so important to abstain from consuming it but I crave it as well as sugar constantly. Any advice?

Also, I got in touch with the porphyria foundation who gave me a bunch of doctors in NY. I finally got in touch with one of them and after reviewing my blood work she said I would have to wait to get tested again during a "flare". She only sees people with confirmed diagnosis. She gave me the name of some tests to get during a flare which I assume would be any severe abdominal pain which I have been getting a lot lately. Or any numbness like I had not too long ago.

Hope you are feeling good and enjoying the weather.



January - May 25

Hi Cher - Yes, if you are sensitive to gluten 1/8 of a tsp. can set off an inflammation in your gut that takes up to 4 months to heal. My carb craving is gone now since I don't eat ANY gluten. The way I stopped eating cake and bread, etc. was to look at it and remind myself of how much pain I would be in for several months if I had one bite. Also, I read up on all the great disease it would set me up for if I kept eating it.

I like sugar, and since going gluten free, my blood sugar tests are fine, so I allow myself to have it. I try to use things like D-ribose and honey, but sometimes I splurge on lots of brown sugar with fruit. If you google sugar craving causes - there's some interesting information - like, your body needs energy, or your brain needs serotonin… Best to get your blood sugar tested - the most accurate test for diabetes is A1C which measures blood sugar levels over time. The blood glucose just measures your sugar at that specific time. If it's a severe craving you might want to check with your dr. Celiac is linked to genetics and diabetes often runs in celiac families.

Glad you got hold of the Porphyria Foundation - aren't they nice people? So that's reassuring that you have someone you can contact next time you have bad pain. Did you read up on ALL the different symptoms it can cause, so you know when you're having a flare? Also, did you get the list of drugs that can cause symptoms? I found a really good list at the Porphyria website - you have to search a bit, but the best list is colored in yellow and has tons of medications listed, saying whether they are safe or not.

I think it may not be so rare as some think - maybe lots of people who have bad reactions to these drugs really have porphyria, but nobody knows about it so it isn't properly diagnosed.

BTW, the head of the Porphyria Foundation told me that most labs don't know how to adequately do the tests or keep the specimens at the right temperature, so people very often get false negatives. If you need a test, you might want to call them and have them guide you through the process - or call the NY drs. and see what labs they recommend.

You did a great service with your post about this - raised a lot of awareness.

Hope you too are feeling good. Summer has hit and it is humid! The last couple days I have been really achey - but so has everyone else! So I guess it's the high humidity. Still, it's much better than snow! : )


Cher0208 - May 25

I definitely have to get my blood sugar checked. I have a real problem with sugar and gluten and you're right. It is indicative of something else going on.

I did look at a few different lists of drugs. Some say certain drugs are okay where others say that they're not. I am not on any medications at this moment and intend to keep it that way unless I have to be on something. In my mind, its easier if I avoid all medications, ibuprofen included!

You made a good point about the labs. I'm going to call the American Porphyria Foundation again and see what labs they suggest I use.

Take care!


lucky13 - May 27

I really think my 1 yr old has celiac, so in my research I read that the blood test can also come back negative if you haven't had any gluten, so you can't be gluten free before testing or it will com back negative.


January - May 27

Hi lucky - yes, that is true, if you have been gluten free, your blood test won't show antibodies to gluten. I got diagnosed based on my history and my positive response to the gluten free diet. I would have had to eat a few crackers every day for 3 months and then take the test. I refused because I don't want to be in bad pain again.

Fantod mentioned there being a stool test for gluten, so you might want to google that or read up on it. I don't know anything about that test, or anyone who has tried it.

There is a doctor in Baltimore who researches and specializes in pediatric celiac disease. His name is Dr. Alessio Fasano - if you google his name you will get a lot of helpful links about this disease. He's done great work in raising awareness about the gluten problem. You might be able to contact his office and talk to someone on his staff.

If your child has celiac or a gluten problem, you will save him/her a lot of future health problems by getting it diagnosed and treated now. Kids with gluten sensitivity have an inflamed gut. No matter how well you feed them, they cannot absorb the nutrients needed to build a healthy body - like good teeth and bones, healthy brain and immune system, etc. Good luck with it. It's not so bad really, all you have to do is avoid the cereals with gluten and products made from them. The hardest thing is learning the correct diet and foods to avoid. Also, supplements are often needed. Wishing you the best with this.



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