71 replies to this topic

[serendipitystreet]

I was diagnosed with fibro last year but it was actually a severe reaction to gluten. I had never had such intense muscle and joint pain as I experienced - the weird thing was that it came out of no where just woke up with it one day - went to the ER they gave me pain meds which barely helped the pain - sent me to my family dr who said I had fibro - I brought up the gluten issue and she had no clue what gluten even was (surprise, surprise). She gave me other meds - I usually don't like to take meds at all but the pain was so intense I was desperate. Of course I did my research on the meds and they were supposed to be gluten-free but they weren't and I got sicker and sicker - even more intense pain, intense dizzyness, the back of my neck hurt so bad I could barely turn my head and I had this horrible smell in my sinuses like a sinus infection. Went back to the ER - told them "something is seriously wrong with me" - they did every test they could think of and another big surprise could find nothing wrong and told me to go back to my family dr. At first I did not connect the new meds with all of this because I had researched them and they were on a gluten-free list of meds. But after much reflection on the past 2 weeks I realized that I got sicker when I started taking those new meds so I did some more research and found the meds on a different list which said the meds contained wheat starch. At least I had my answer but even after quitting taking them it took about a month to get back to normal and I had only taken 1 tiny pill a day for not even 2 weeks! All of the pain, dizzyness and other symptoms were gone. I went back to the family dr because I wanted to share with her that I did not have fibro but a reaction to gluten. She was actually very interested and I faxed her some articles I found that related fibro to gluten. I have not seen her since but hopefully she has educated herself about gluten and will share the information with other fibro patients.

[ponita]

It amazes me how we "the patient" so often has to be the "educator" to the docs we see! Along with the gluten problem, I was bitten by a tick many years ago (15) and had text book reactions and to this day, I see doctors for referals on other problems who look me in the face and tell me it's impossible for me to have ever had Lymes dx.

I had a doc tell me lately that the reason I had trouble with my grocery shopping (Major joint pain walking on the concrete floors and the store is HUGE, so it's like walking a marathan to go up and down the isles), He said I was having panic attacks from being in large spaces! I asked how could that be when I often speak in front of large groups of 300 people in meetings and love being on the stage. If anything would give a person a panic attack it would be public speaking.

I feel like anymore I have to educate myself with as much information as I possibly can so I am informed on all the issues. I get upset with some of the docs but I figure maybe if this info I share with doc helps the next patient it's worth it.

I've been gluten-free for 12 weeks (june 16th) and have drasically reduced my joint pain! No more restless leg syndrome either! The last 6 years the joint pain has totally disabled my life and for years the docs would dx with all types of names (including firomyalgia, chronic fatigue, herpes 6 virus, and all would aggree "well, you are really sick" . It took a GI specialist that I saw in June who was a consult because of my ongoing anemia and abdomial pain. He put the joint pain / abdomial pain / anemia connection together in 15 minutes.

Melissa

[red345]

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[hthorvald]

Barbara,

If you have been gluten free and then ate oatmeal, then that's probably the culprit. Unless you live in Europe, most oats in the US (not sure about Canada) are processed in the same place as wheat and rye. It's not that oats contained the gluten we can't eat, it's the cross contamination process.

I was diagnosed with fibromyalgia 3 years ago and had a huge flare up recently. Mine gets really bad in my shoulders, which triggers my migraines. It's also painful in my legs and arms. It's calming down now, but it seems to have coincided with eliminating glutens from my diet. I'm convinced that celiac disease and Fibro.... are related for sure.

My sister was just diagnosed with pernicious anemia, which also can be triggered by celiac disease (I think), but she refuses to get tested for celiac disease. However, she continues to complain about headaches, upset stomach, bloating and other symptoms of celiac disease.

Good luck to you.

H.

[red345]

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[plantime]

My fibromyalgia has settled into the area from my shoulders to my fingers and nowhere else at this time, which I think is unusual and it bothers me mostly when I am in the bed.

How odd that you should say that! I was never diagnosed with Fibro, but I have had pain and tingling with numbness in only my arms when I lay down, too. I also had "cold streaks" where the numbness was, so I thought something was wrong with my cardiovascular system! My doc told me it was because of the way I was laying, and the surface I was on. I think of it now only because you mentioned it: it went away completely when I went gluten-free. Nothing showed up on tests except a bound up nerve, but that was only in one arm, and not where I was having problems. It had to have been the gluten, I still lay the same way, on the same surface!

[tarnalberry]

barbara, I'm not sure why your pharmacist would tell you that gelatin has gluten. (I certainly hope he didn't tell you glucosamine had gluten!) Perhaps he's concerned that manufacturers are using wheat to prevent the capsules from sticking, but that actually isn't that common. Do call the company before taking his word for it. I cannot imagine why gelatin would have gluten added to it.

[plantime]

I checked gelatin ingredients, too. One kind is made from hooves, skin, and connective tissue, the other kind is made from seaweed. All I can think of is that maybe he was referring to what Tiffany said about non-stick coatings. Ask your pharmacist to explain. Mine is very good about not giving me something I can't have, and he says gelcaps are just fine. One thing is for sure, we have to make sure to communicate with our pharmacists, too.

[tarnalberry]

there's a third kind of geletin, made from fish bones (so as to be kosher), too. but none of them contain gluten. (ever made stock from beef bones or chicken bones, and had it gel in the fridge? that is gelatin - it is a substance that dissolves out of the bone at high temperature.

[Connie R-E]

My fibromyalgia has settled into the area from my shoulders to my fingers

This happened to my hubby!! We were already gluten-free, so I started hunting for secondary food allergies, and BINGO!! He's allergic to pork!
He cleared up within a week after we went pork free!

Connie

[strack2004]

I also have bone, muscle, ligament. join, pain , pain in my right foot, especially, also right shoulder, aching, up and down arms. Tingling in hands and feet, burning across upper ab. Abdominal stuff seems to get worse at the same time as body aches. I have not been diagnosed with fibromyalgia, however my Dr. did suggest that I see a rhematologist at one point. I didn't take him up on it. Was already exploring celiac. Have been gluten-free almost 8 weeks. I have not been diagnosed. Yesterday was a good day. Today is a bad one. Yesterday I ate some veg. soup that I had frozen before I went gluten-free. I didn't remember that that would have barley in it, not very much, but not good. Also this mornng I ate a freshly steamed beet/ I haven't had beets for awhile. Had visited a Farmer's Market this week and got lots of nice fresh veggies. I hope the problem is the barley and not the beet. Also I changed brands of glucosamine-chondroitin to one from Hy Vee. It has added ingredients including various kinds of cellulose listed, The word cellulose has various long words connected with it in the list. I guess I need to find a different sorce of glucosamine. It's good to share experiences with others. Ruth S.