71 replies to this topic

[GottaSki]

Good Morning Miche-

I was recently diagnosed wtih Fibromyalgia - my stiff/achy/pain, severe fatigue, fogginess, heat intolerance and light sensitivity all became worse these past 8 months that I've been gluten-free.

It is my belief that long undiagnosed Celiac Disease caused my fibro symptoms. At diagnosis I was 43 and had had more mild versions of the fibro symptoms along with consistent unexplained weight gain, severe bloating, constipation and stomach discomfort for over 25 years! I'd reported the mild and worsening versions of these symptoms to a minimum of 8 primary doctors of the years -- they would run general blood work and thyroid hormone tests each time and each time I came up normal except for anemic for which they prescribe iron supplements and send me on my way.

Fast forward to Winter '07-'08 - my symptoms were quite bad so I insisted my new primary doctor continue to run tests until they figured out what was wrong -- it was about this time I was certain myself that it was serious and could not be "all in my head" -- from then on when ask by a doctor if I have depression I was able to respond that I am NEVER depressed until I feel sick for long periods at a time (6 weeks or more) and then I become depressed -- I have never felt depressed first and then become sick!

I kept on the doctors for another year and a half before they finally ran a tTG IgA on me which was marginally positive and led to me Celiac Diagnosis. As many on this forum can attest primary physicians NEED to be educated about the broad spectrum of Celiac patients -- that antibody test was the only test besides iron that wasn't normal in 50 blood tests over that last year -- I firmly believe no doctor even thought about it because I was overweight with c, instead of underweight with d!!!

My digestive symptoms have improved these past eight months and I am slowly losing weight (about 20 pounds now) during a period that I have been more inactive than any other period in my life!

As for Fibro-Celiac connection - I firmly believe there is a connection. Whether my fibro will improve with long term gluten-free living is anyone's guess.

Currently I am more interested in the neurotransmitter connection in Fibromyalgia. For me it makes sense that if ALL of my vitamins and minerals were very low upon dx, then it is not a leap to think that my amino acids were not absorbing properly as well. The eight essential amino acids we get from eating protein are so very important to many systems/processes in our bodies. I'll be supplementing with some targeted amino acids soon -- just waiting for a response back from celiac doctor to make sure it is not dangerous to take these supplements.

Guess this was a very long way of saying what JoAnn said very well -

"In any case, the best thing you can do is listen to your body. What is it telling you? Do you feel better when you are gluten free? Then don't eat gluten! You don't need a doctor's diagnosis to figure out if you feel better gluten free or not....thank goodness!!"

Good Luck!

[miche]

Hi Miche,

Welcome!!

This is a VERY old thread....you might want to start a new thread so that you get more attention and more answers...?

I know that I have both fibro and celiac disease, and if I eat anything with gluten I have symptoms about 12 - 36(max) hours later. Definitely not anything like a month. But everyone is different!

So I don't know what to tell you.....except that fibro is somehow linked to autoimmune diseases, that's for sure. It shows up most often in people who have various autoimmune disorders. But the medical profession still doesn't understand that much about fibro.

I've been gluten free for a year now. Most of my classic celiac disease symptoms are gone: the mouth sores, the diarrhea, the migraine headaches, the stomach pains. But I have several other autoimmune diseases plus fibro: I have a lot of symptoms that are NOT gone. In fact, I'm currently in a lupus flare condition, which is not a good thing at all. Vertigo, nausea, double vision, photosensitivity, yuck. I'm still hoping that my other conditions will go into remission; lots of people on this board have had miraculous recoveries, even if it took a while!

In any case, the best thing you can do is listen to your body. What is it telling you? Do you feel better when you are gluten free? Then don't eat gluten! You don't need a doctor's diagnosis to figure out if you feel better gluten free or not....thank goodness!!

Good luck to you!
JoAnn

[miche]

Thank you both for taking the time to answer my concerns, I will resume a gluten free diet , there has to be a connection , I also have a very low vitamin d level and autoimmune thyroid , I cannot find the newsletter I received yesterday and am quite upset that I may have deleted it , it was from the FM/CFS /ME association and it stated that a new blood test is in the making that actually shows antibodies in people with fibro and may well prove it's an autoimmune problem , it should be approved by the FDA and on the market within the next two years , wish I could remember all the details , maybe I will google it in the hope of finding it, it stated your doctor would not be aware of this study as yet , anyhow , more proof that it's not in our heads !
thank's again ,
Miche

[GottaSki]

Thanks Miche---that would be great news for everyone with Fibromyalgia to have an antibody test -- so very difficult to be diagnosed with something that can't be proven.

[BridgetinOhio]

I am interested in this connection. I was dx (diagnosed) with fibromyalgia and celiac around the same time. I've always been basically sick and am in my 30s. I went gluten-free and have been for about over 1 year. I took a supplement that basically made my pain go away (was expensive and had gluten in it) before I was dx with celiac. Several months ago I found out that my vitamin D level was very low. I've been taking a supplement and my pain has decreased but not gone away. I want to get the rest of my levels checked because I believe that I may have some other deficiency that is causing this pain. Definately fascinating!

[miche]

Bridgetin ohio'
My I ask what the supplement was that took your fibro pain away or is this forbidden on this board?
Thank's
Miche

[txplowgirl]

I was dx'd a year ago with fibro after being in pain and tummy problems since I was about 7 or 8 years old. After ALOT of dr's telling me everything was fine or it was all in my head. I finally found a rheumatologist who dx'd me with fibro. FINALLY! An answer or so I thought. She put me on Cymbalta, made everything worse, ok, switched to savella, same thing, Lyrica, Damn! No good, Then Pristiq, again no help. Finally, I just quit taking the meds. I had joined Fibro Network. They send out these little priodicals and in one I read that about 75% of fibro patients have food intolerances. That was interesting. Researched further and found the word Gluten. More research and here I am. It took from the time I was dx's last year to April of this year to get my nerve up to go gluten free. As you can see in my signature what all I have a problem with. My pain and fatigue level has always been at between an 8 or 9. That is 10 being the highest. My pain levels are down to a level between somedays ranging from 2 to a 4. That is HUGE! My fatigue levels has only dropped a couple of ponts to about a 7. So i'm still working on that but slowly but surely i'm getting there.
I have never been tested for Celiac, but since my father died of colon cancer, 2 of his brothers with stomach and lung cancer, several 1st, 2nd and 3rd cousins with everything from breast cancer to brain and kidney cancer. And a great aunt and great grandmother. This all just on my dad's side. My mother's side. My grandfather and 2 of his sisters with colon and stomach cancer, as well as several cousins. In all, last count of 26 out of 48. Dad was 1 of 11, mom was 1 of 9. So lots of relatives. I think I need to stay gluten free. No way am I gonna do a gluten challenge for a chance to see if a blood test MIGHT come back positive. I am currently working on getting the money together to get my mom and I both the tests from enterolab. Just real curious as to what they have to tell us.

[miche]

Thankyou for sharing your experiences, I have now made a promise to myself to stick to the diet, I seem to react to fructose, msg, sulfites and gluten , dairy , hence with every bad reaction and fibro flare I keep changing my diet , if I think fructose cause the flare then I eliminate that and resume wheat , the problem is that I can't seem to wrap my head around the fact that it could be all of the above , my diet would be so restrictive that I would have to cook seperate meals for my husband and shopping and cooking while in a fibro flare is difficult as it is , so I make the meal to please him and suffer the consequences , I know it's crazy, last night we had guests and I served lasagna , , the garlic in it alone gave me such pain in my left scapula and stomach I could hardly breathe , was it the sulfite in the tomato sauce, the gluten in the pasta , the ricotta and mozarella or all of the above , because so many people feel that fibromyalgia is a made up disease I hate to draw attention to myself by stating that I cannot eat anything that I suspect and I stress only SUSPECT is contributing to the pain, I suppose I cannot expect anyone to take me seriously as as don't really know what I am doing and the doctors have no clue as to what is causing my pain , except thatt I was diagnosed with fibro , the tighness in my upper back scapular area is at it's worst yet I hear gas in my upper stomach and suspect it's trapped gas in my upper back that's causing the pain , I also have heartburn and the PPI that I am on are not helping one bit , sometimes I manage to release a huge burp and it then feels like a giant bubble in my left shoulder blade is leaving my body and the pain simmers down yet I still feel the fibro tightness in that area when I try to turn my upper back sideways , all this to say that I don't know what to do at times , I had a two week flare last month after I ate date squares and pork roast with garlic, it felt like the flu without a fever , I could hardly move a muscle , stomach pain, shivers and nausea plus it made me real emotional I was in tears a lot of times and could not explain why except that I felt so sick , can anyone relate to any of this or am I crazy?

[txplowgirl]

Hi Miche, yes I can relate to that. I have hurt between the shoulder blades so bad I couldn't hardly breathe. Felt like someone was sticking a knife in me. Now, when I eat something I shouldn't my first symptom is pain between the blades.
Honey, if you keep eating everything that is making you sick you will only get worse. Take a time out and make a list of everything you CAN eat, not what you can't. Garlic is a no no for some. Nightshades is also a no no for some also. Those are potatoes, tomatoes, eggplant, all peppers, and paprika. They cause inflamation and painand for some swelling. . Black pepper gives me almost instant D, within 10 minutes.
You are gonna have to speak up for yourself because no one else will. Think of a favorite food of your husband's and make it gluten free. Sometimes you can't tell the differnce.
Hang in there and email me or pm if you would like. We are all here in the same boat.

[GFinDC]

Hi Miche,

Sounds to me like you might benefit from trying an elimination diet. That was how I found out dairy and gluten was bothering me. I don't have fibro but do have celiac. Anyhow, you can find lots of threads on this forum about elimination diets. Basically, you start with one or 2 foods that yuo think are ok for you, and build from there. You only add a new food every 3 days or so, as reactions can be delayed in some people. The idea is to build up a list of safe foods for your unique body. If you do an elim diet, remember everything counts, vitamins, medicines, teas, coffee anything you put in your body has to be eliminated. Elim diets are a do it yourself test method for food intolerances and work very well IMHO. A food diary can also be helpful to record what you eat each day and the symptoms you have.

[miche]

TXPLOWGIRL AND gluten-free IN DC , thank you both for your advice , I have one more question , I forgot to add that my allergist has diagnosed me with corn as my biggest allergy plus eggs give me instant stomach ache , so if I add gluten , msg, sulfites , dairy , soy ( related to msg ) possibly nightshades as I react to tomatoes , glucose and gassy vegetables I am left with a very restricted diet , my question is am I a rarety ? did silent celiac cause all these sensitivities and will I eventually be able to add any of these foods once my gut has healed some ?
Every one I know eat all they want so I feel like such a hypochondriac ( wrong spelling I think ) around them , I guess I shouldn't as they all have health problems that may be caused by their diet , it felt good to eat what everyone was eating when I had company , it made me feel normal , now I realise that attitude is sick and hurting me , heck they all drink and I don't , yet I never felt bad about that so as you said only me can take care of my health , thank you for your support and kindness , it helps a lot to know other people can relate .
Miche

[txplowgirl]

Hi Miche, first of all you are not alone. There are several people here that have either a corn allergy or sensitivity. Like GFinDC mentioned try the elimination diet and see if that helps. If not try the SCD diet. There are links here for both of those. If it wasn't for the support of the people here I would have been continually glutening myself. You can do it, it will take awhile and it is overwhelming at first but keep at it. Believe me that first time you wake up and you feel better than you can ever remember is worth it. There will be setbacks but just keep plugging along. Also, if you haven't already get some literature or get your husband to read the information here. Let him know that this is for real. Also, do you know that if your husband dosen't go gluten free you will need a new collander, toaster, that is if you eat gluten free toast, and new pots and pans and cutting board for yourself in case there are scratches. No matter how much you wash them gluten can embed it self. Also, shampoo, lotions, meds, etc. Like I said overwhelming. I found out in the last few days that when I make my significant other his gluten sandwiches I have to wear gloves. If not I get D within 24 hours. How's that for being sensitive?
Anyway, have a good day and try not to be so down on yourself.

[GFinDC]

You may or may not be able to add foods back in later Miche. Everybody is different it seems. One food that celiacs commonly have problems with at first is dairy. One dairy problem is lactose sugar intolerance due to the villi being damaged and not being able to make lactase enzyme. If that is the trouble then you might be able to eat dairy after the villi heal. If the dairy problem is due to casein intolerance (dairy protein) then no such luck.

I think people's gut are very sensitive at first and perhaps they can tolerate many foods better after healing. It seems like that happened with me anyhow. I actually discovered carrots were a problem for me after a year. I still consider the jury to be out on tomatoes for myself but tend to want to try them once every 6 months out of stubborness.

[miche]

Thank you both again, as of this morning I made a promise to myself that no matter what I will learn all I can and do all I can to get better, I am sure that my husband will be supportive , he does listen to all I say about reactions to different foods and he is not a fussy eater to begin with , like me he is puzzled at times and he does want me to get better , I realy cannot blame anyone but myself in not trusting my gut feelings ( pun ) that eliminating my triggers will help me heal!
Will let you know how it goes , in the meantime Merry Christmas to all !
Miche

[NE Mom]

Hi All,

I was dx'd with Fibro in 2008. I literally woke up one morning and felt like I had the flu that never went away. The joint pain, fatigue and brain fog has been extremely bad this year. I have noticed a difinite connection between my tummy issues, sore throat, throbbing in my ear, and tense jaw after eating any dairy products. I try to avoid all dairy. I have thought about the possible gluten connection for along time but never tried removing it.

Last month I had skin testing done to see if I was allergic to dairy or any other foods. they tested for 50 some foods-all were negative. Needless to say I was a little disappointed because I was hoping for the smoking gun! Upon leaving the Doctor's office I stopped at Barnes & Noble and picked up a copy of Fibro Aware to waste some time. The first page I turned to was an article on Food Allergies/Intolerances and Fibro. The article stated that skin testing was a waste of time because the allergies/intolerances were not IgE mediated. So, I figured it was a God thing and that I wasn't suppose to give up based on those results.

Last week, I had my GP run the Celiac Panel blood work. I haven't seen the results yet but was told on the phone they were all negative. I not going to get to worked up until I see them for myself.

I have been gluten free for two days. While my legs still hurt, I did notice last night that I did not feel near as fatigued as usual and that the brain fog was better.

Can someone tell me more about EntroLab?

Oh, I have a seven year old who has 11 IgE mediated food allergies and counting. She also has an autoimmune illness, an immune deficiency disease, and something called EGID that relates to Igg mediated food allergies. I'm wondering if her remaining GI issues are not also related to Gluten since one of her allergies is to rye. I've had her tested for celiac's three times-in October she had a scope too--all have been negative.
Sam