# not sure what to do



## LoriAnn (Jan 31, 2002)

Hi everyone,I have been coming to this board since the summer of 2000, I had to take a break due to financial reasons but came back in Jan 2002 because I could no longer cope without the support I got here.I was diagnosed with FM/IBS in 92, after coping for years without a dianosis.I recently discovered I have a severe gluten sensitivity (grain intolerance)and have been on the GF diet for several weeks. Almost all of my FM/IBS symptoms are gone, as long as I stay away from gluten, my doctor is willing to conceed that I may have been misdiagnosed.I'm not sure anymore if I should even be here commenting on a condition I never really had, but I would really miss the friends I made here, I have been wondering for several days what I should do about it, since I couldn't decide I thought I should ask all of you, its the FM'ers board, what do you think I should do?Lori


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## Feisty (Aug 14, 2000)

Lori,I'm so glad the GF diet is helping you and has changed so many of your symptoms. Please don't think you can no longer come to this board. We would miss you terribly. After all, it's possible there are many more individuals out there that can find relief from giving up all gluten products in their diets. You have been through so much and I assure you, your support and advice means a lot to me as I'm sure it does do everyone. Keep coming!!Sincerely,Karen


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## moldie (Sep 25, 1999)

Hi LoriAnn, Welcome back. I am so glad you found some help for your pain. You are certainly welcome to stay. Otherwise, if you don't feel comfortable commenting here anymore, you could ask Jeff if he would consider creating a food intolerence support group board here. I'm sure there are a lot of people who come here and find that a lot of their problems stem from/resolved by addressing their food intolerences. MNL would love it, I'm sure!


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## weener (Aug 15, 2000)

Lori Ann, I am so happy to hear that you are doing well. You are always welcomed here. When you left last year we were worried about you, now that you are back we would like you to stay. Now, don't make me have to drive across the country to find you!!! Mind you I have never been down east, I hear it is quite beautiful. Okay, no APB's all righty?


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## LoriAnn (Jan 31, 2002)

Thanks everyone, you guys are great.Karen you are sweet as always. A food intolerance board? It sounds like a great idea, but moldie, who is MNL?And weener you made me laugh (it is beautiful here)Lori


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## 1babyjaguar (Apr 2, 2002)

Hi Lorrie,This is my first time on a message board and I don't have a clue if I am doing it right. Anyway fyi I was told I had a gluten problem about 39 years ago when I was pregnant with my son. I was put on a gluten free diet and after a while I went back to eating anything I wanted. What is funny is that I didn't develop IBS until a few years ago so I guess the gluten didn't have anything to do with it. I am glad it has made a difference in your life!


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## LoriAnn (Jan 31, 2002)

I'm a little confused, why do you think gluten intolerance doesn't have anything to do with the IBS that developed later? I hope your doctor explained to you all those years ago that gluten intolerance doesn't go away,ever, only the symptoms do, and thats usually temporary. Gluten intolerance can present in a hundred other ways, (other than IBS/stomach symptoms) including insomnia, tooth decay, breathing problems, period problems, canker sores, arthritis, muscle and joint pain etc. If you had been diagnosed with gluten intolerance, please go to www.celiac.com and check out the list of related conditions & symptoms (including FM) and read some of the posts there. This is terribly important, people with this condition have a 40 to 100% higher chance of developing abdominal cancer.Good luckLori


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## carolf (Jul 15, 2001)

Dear Loriann, Hi! I'm so glad that you finally found something to help. This has really caught mmy eye. Could you answer some questions for me? I am beginning to suspect that I too, may have a gluten intolerance. How did they check for this intolerance? How many times were you tested? Did they do more than one type of test? Did any of your tests come back negative? What were some of the symptoms that made you suspect this? I have been told I have fibro but I still think there is something else going on. What was your intitial symptom that made you go to the doctor? (I mean way back in the beginning before you got the hundreds of other symptoms that come with fibro?)Any help would be appreciated.


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## LoriAnn (Jan 31, 2002)

wow, thats a tough question, I guess joint pain would be the first thing I complained about consistantly. By the time i was diagnosed with FM I was in a neck brace, walking with a cane and had braces for both my wrists, I was 26. I've had bowel problems all my life, I was hospitalized the first time for that when I was 2, to be honest I never thought the 2 were connected until I discovered gluten intolerance, since I have been gluten free I know they are. There are several tests, 2 blood tests, (the more expensive test is more accurate, the less expensive,less accurate test is the most common one done)These tests look for antibodies produced against gluten. Then there is an endoscopy, they go into your stomach & small intestine through your throat and take biopsy (actually several)but you have to have an experienced GI read the tests because stats show they screw it up about 40% of the time. Both my tests were negative, but I had been gluten free for a couple of weeks before the tests were done, and that can screw up the test results. My doctor decided I was gluten intolerant because my recovery was so dramatic when I eliminated gluten from my diet, I still have some problems when I mess up the diet by having something with gluten by accident, (like bread crumbs in the butter)even a few bread crumbs can trigger the ibs and 2 days of aches and pains, but basically I am 90% better. 2 months ago I thought I was going to die, now I know how to make myself well and stay that way, changes to my diet were a small price to pay. My advice to anyone is to try the diet, it isn't that limiting, but it is a bit complicated. No one has anything to lose by trying, and possibly everything to gain.Lori


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## carolf (Jul 15, 2001)

Thanks Loriann, I've only had fibro for about 2 years now. My intial symptoms were flu-like. I had constant heartburn and nausea for 3 weeks straight. I lost about 30 lbs. During some of the testing that wss going on I know I had a test for celiac disease. I'm not sure if this was done throught blood work only or if this is one of the tests done when I had an endoscopy. I know the test came back negative at that point. One more question if you don't mind--have you ever developed a rssh with this condition--if so, what type of rash was it and where was it located? Thanks again}


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## M&M (Jan 20, 2002)

carol, you said you lost weight with fibro? this is very good news to me...i have an appt with a specialist may 9, i really think i have fibro or cfs or combination thereof. the big thing that has me worried is my weightloss. i am terrified because of this weightloss, but now maybe i can relax if you said you lost weight as well. i guess i'll find out (hopefully) soon.~mrs. mason







ps - i'm sorry that you lost 30 lbs the yucky way


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## LoriAnn (Jan 31, 2002)

yes i did carol,tiny, tiny blisters came out on my hands, very itcy, which would peel and become very dry, also on knees and elbows, with occaisional patches on my chest, in the shape of a circle, I also had a raw patch on my head which was there for years, I now know it was aggrevated by shampoos containing wheat proteins, thats why that patch in particular didn't want to heal (it was actually the first thing to heal after starting the diet)I have not had any sign of rash in about 4 or 5 weeks. I also lost 30 lbs when I reached the worst of my condition,I have regained 10 lbs since going GF. If you were that sick before testing, how much had you been eating? I read that you would have to consume 4 to 6 slices of whole wheat bread a day for several weeks before the tests for it to be accurate.Lori


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## LoriAnn (Jan 31, 2002)

PS Carol, I also had chronic yeast infections, if you could consider that a skin conditionLori


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