Celiac / gluten intolerance misdiagnosed as CFS, IBS

Discussion in 'Fibromyalgia Main Forum' started by xchocoholic, Aug 19, 2006.

  1. xchocoholic

    xchocoholic New Member

    Hi folks,

    I've been talking about the gluten free diet recently and thought I should give ya'll the name of the website that got me started down this path.

    NIH = National Institute of Health


    I copied part of this article in and edited this to allow the paragraphs to be read easier.

    *************** NIH celiac article ******************

    What is celiac disease?

    Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food.

    People who have celiac disease cannot tolerate a protein called gluten, found in wheat, rye, and barley.

    Sometimes the disease is triggered-or becomes active for the first time-after surgery, pregnancy, childbirth, viral infection, or severe emotional stress.

    ----- > WHOA !!!! DID THEY SAY VIRUS ??????????????????

    What are the symptoms of celiac disease?

    Celiac disease affects people differently. Symptoms may occur in the digestive system, or in other parts of the body.

    Symptoms of celiac disease may include one or more of the following:


    recurring abdominal bloating and pain

    chronic diarrhea

    pale, foul-smelling, or fatty stool

    weight loss / weight gain


    unexplained anemia (a low count of red blood cells causing fatigue)

    bone or joint pain

    osteoporosis, osteopenia

    behavioral changes

    tingling numbness in the legs (from nerve damage)

    muscle cramps


    missed menstrual periods (often because of excessive weight loss)

    infertility, recurrent miscarriage

    delayed growth

    failure to thrive in infants

    pale sores inside the mouth, called aphthous ulcers

    tooth discoloration or loss of enamel

    itchy skin rash called dermatitis herpetiformis

    A person with celiac disease may have no symptoms. People without symptoms are still at risk for the complications of celiac disease, including malnutrition.

    The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications.

    Why are celiac symptoms so varied?

    Rearchers are studying the reasons celiac disease affects people differently.

    Some people develop symptoms as children, others as adults.

    Some people with celiac disease may not have symptoms, while others may not know their symptoms are from celiac disease.

    How is celiac disease diagnosed?

    Recognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases.

    In fact, sometimes celiac disease is confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, Crohn's disease, diverticulitis, intestinal infections, and chronic fatigue syndrome.

    ---- > WHOA !!! Celiac is confused with CFS ??????

    As a result, celiac disease is commonly under diagnosed or misdiagnosed.

    Recently, researchers discovered that people with celiac disease have higher than normal levels of certain autoantibodies in their blood.

    To diagnose celiac disease, physicians will usually test blood to measure levels of

    Immunoglobulin A (IgA)

    anti-tissue transglutaminase (tTGA)

    IgA anti-endomysium antibodies (AEA)

    Before being tested, one should continue to eat a regular diet that includes foods with gluten, such as breads and pastas.

    If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if celiac disease is actually present.

    If the tests and symptoms suggest celiac disease, the doctor will perform a small bowel biopsy.

    The Gluten-Free Diet

    A gluten-free diet means not eating foods that contain wheat (including spelt, triticale, and kamut), rye, and barley.

    The foods and products made from these grains are also not allowed.

    "Plain" meat, fish, rice, fruits, and vegetables do not contain gluten, so people with celiac disease can eat as much of these foods as they like.

    Recommending that people with celiac disease avoid oats is controversial because some people have been able to eat oats without having symptoms.

    Until the studies are complete, people with celiac disease should follow their physician's or dietitian's advice about eating oats.

    The gluten-free diet is challenging. It requires a completely new approach to eating that affects a person's entire life.

    ***************** End of report ***********

    The people at the celiac dot com message board are very knowledgable and helpful. But there is tons of info on the net.

    Hope this helps someone ... Xchocoholic
    [This Message was Edited on 12/03/2006]
    [This Message was Edited on 12/17/2006]
    [This Message was Edited on 12/20/2006]
  2. shar6710

    shar6710 New Member

    I've been on a gluten free diet for about six months now at the suggestion of one of my doctors. I could tell a difference after about 6 weeks (made a few mistakes during the first few couple weeks). Until my recent problems I had much less gas/IBS symptoms.

    What I have always wondered is why bother being tested? If the only treatment is diet: it seems you can commit to several weeks being gluten free and if it helps you, you've accomplished the same thing and saved a lot of money.

    Any thoughts on that?

  3. shar6710

    shar6710 New Member

  4. xchocoholic

    xchocoholic New Member

    Personally, I would like to know for sure why I have gotten better, just so I can feel like I have found the solution and don't have to worry about a relapse.

    It's too late for me to have the antibody test or the biopsy. And I would never eat gluten again just to be tested.

    But, if my genetic testing comes back negative, I will always be waiting for a relapse of CFIDS / FM.

    I think each person has to decide for themselves if they want proof of celiac. I understand some feel positive diet results are proof enough though.

    One other reason I would like proof is so that I can convince my 18 year old daughter to get on the diet. She has a positive ANA, swelling of unknown origin and anaphylactic episodes. She has been tested for everything under the sun except celiac. She first shows signs of JRA when she was 10. She meets the criteria for celiac.

    Congrats on the diet. How are you doing ? Any dramatic results yet ???


  5. shar6710

    shar6710 New Member

    I haven't been tested and I suppose that like other sensitivities you wouldn't have to be a celiac for gluten to bother you.

    No I haven't waht I would call dramatic results. It hasn't helped my fatigue or cognitive function at all. But as I said it did until recently help my IBS type symptoms and I have to think that in the long run ridding my body of the additional inflamation can only help.

    Sticking to the diet hasn't been as hard as I imagined. Although I still crave bread on occasion I have learned to live with substitutes. To me the hardest part of the diet is learning where Gluten hides. The new food labeling requirements have really helped.

    [This Message was Edited on 12/04/2006]
  6. xchocoholic

    xchocoholic New Member

    Do you know if sensitivities cause seizures and mobility problems ?

    My fatigue has definetly gotten better but, I still seem to need to rest a whole day every few days though.

    Do you go to the celiac dot com board ? They are great about helping out over there ...

    Have you eliminated dairy, soy, corn and eggs yet ?

    I find I feel better if I eat whole foods. But, I love Pamela's spicy ginger cookies : )


  7. xchocoholic

    xchocoholic New Member

    Hmmm ...


  8. turtlesyndrome

    turtlesyndrome New Member

    Have you been tested for celiac's? I am wondering how many people on this board have been tested for it, and or how many people have had thier symptoms vanish from a gluten free diet. I eat very little gluten, but often I seem to get caught with those hidden glutens, like in soy sauce, I know... excuses excuses. When I eat gluten I get more brain fog and achy muscles. So I just try to avoid it.

    Although, in the spring/summer 2003 my symptoms improved significantly, and I wasn't taking any supplements and I was eating everything. I could walk an entire mile without a huge flare up. But by the end of that summer I pushed and pushed myself and ended up back to my full blown CFS. The wierd thing about that improvement was that I wasn't even doing anything special to treat my CFS. I have no idea why I got better that time.
  9. xchocoholic

    xchocoholic New Member


    You're welcome. Hope school is going well for you. My daughter just finished her first semester at college. WHEW !!!!


    Love the name, hated the story about getting better then crashing. I am soooo afraid this is going to happen to me.

    I wasn't tested for celiac. My GI did not look while he had me out for either the endoscopy or colonoscopy. DUH!

    Why don't you stay with the diet ? Do you know that if you are a celiac, you could be doing further damage to your body ?

    It's easy once you get used to it.


  10. turtlesyndrome

    turtlesyndrome New Member

    Yeah, I guess "old habits die hard" he he. Hey for a few weeks now I have been juicing everyday and eating raw garlic daily. I think the longest I have gone without gluten is about 2 weeks. I really need to shoot for a few months without it. Then maybe I can tell how it's helping. How long have you been gluten free?
  11. xchocoholic

    xchocoholic New Member

    I officially went gluten free September 11, 2005. Of course, I made a lot of mistakes along the way. Up until November 2005, I was drinking a nutrition powder that had gluten in it ... duh !!! It was in the form of oat bran ...

    They say that withdrawals only take 3 weeks, so if you can hang on that long, the rest is down hill. Week 3 is a killer though : ) LOL

    Let me know if you try it. xchocoholic
    [This Message was Edited on 12/17/2006]
  12. Catseye

    Catseye Member

    I was seeing a "digestive disease specialist" for 1 1/2 years. I felt like I was dying all the time and kept asking him if it could be something I was eating and he kept saying "no way".

    I tried going to a chiropractor for some relief, not thinking it's going to work at all, and he pops me and gives me a pamphlet on cfs saying that food intolerance is a main culprit. The neck popping and the diet were my first steps towards recovery. I'm still spooked about the doctor not ever mentioning celiac or dairy intolerance. I had never heard of them. And I kept asking him about food!!! Some specialist!! After I saw the chiro, I called to cancel my next appt and dump the specialist.

    happy xmas!

  13. nerdieduckie

    nerdieduckie New Member

    Well, I've been gluten-free since the beginning of August this year. My celiac panel came back negative, but we went ahead with a no wheat/gluten diet anyway and I've had a significant drop in stomach problems. A significant drop in weight as well ;) I HAVE ANKLES!


    The change of diet helped my stomach but not my fibromyalgia, tho the article says CFS so maybe that's why. I don't eat a lot of soy to begin with because I think I may be allergic to it, and I recently switched to drinking organic milk and that has helped too.

    It is really hard to be gluten-free though...I think the person above me (or a few posts) said withdrawals only lasted 3 weeks...it's been more than 3 weeks LOL. I still can't go out to eat without whining. I did find some Oreo alternatives though (and they're actually good *gasp*) and I've found some nice cereal. I still miss eating out though.

    Don't forget to watch your hair products and body products as well. Mum bought a peppermint body wash from bath and body works and it had wheat in it. Ack! No wonder I had been feeling bad since we'd gotten it. So strange that it's not only in food products...

    By the way, I wouldn't advise the gluten-free frozen chicken nuggets. They tasted good but for some reason my stomach hated me a few hours later.
  14. xchocoholic

    xchocoholic New Member


    I'm sorry you had such a rough time with your doc. I saw my GI for about 2 years too. What a waste of time and money !!!

    The really sad part is that celiac is a digestive disease and left untreated it can lead to cancer, etc.


    It is a tough diet, but you'll get used to it. You already know it helped your digestive problems. Eating out is the hardest part for me too.

    Hang in there though. I believe those of us who are this sick take quite a bit longer to heal than what the NIH is saying.

    My hyperactivity and sleeping all of the time got better immediately, but my digestive issues lasted for about 4 months. After 7 months I noticed my Klonopin for myoclonus/seizures was too strong. Then it took me 4 months to get off the Klonopin. And I didn't start walking normally till 11 months of being gluten free.

    I'm still dealing with fibro pain from time to time and fatigue and hypoglycemia. But, I am hoping with time these will clear up too.

    Actually, I felt completely healthy for about 2 weeks in October. It gives me hope ...

    Have you tried sticking to whole fruits and veggies and meats ? IMO We have been malnourished for so long that our bodies need all the nutrients that they can get.

    And I have not seen it anywhere yet, but I have been detoxifying to get the gluten out of my cells too. Just with garlic, pau d'arco, clove tea, etc.

    Good luck with this ... xchocoholic

    Edited to add : I removed wheat, dairy, eggs, corn, soy and chemicals from my diet 2 months prior to going gluten free so I do not know for sure that removing the gluten got rid of my symptoms.

    [This Message was Edited on 12/17/2006]
  15. bunnyfluff

    bunnyfluff Member

    Celiac's is nothing to mess around with.

    Mine went undiagnosed for 9 years (best I can tell) and it almost killed me.

    I ended up so malnourished I cannibalized my bone marrow to stay alive. I hurt everywhere, and the damage it did to my body cannot be erased.

    The blood transfusion I had to save my life gave me the CFS symptoms that have not gone away. I am happy to still be alive, but what quality of life this is today- you tell me.

    And all because of gluten- a small protein peptide that no one thought to look for. Much easier to say that because I am a woman I must be a closet anorexic or bulimic to be so thin. Because I am a woman I am just a neurotic nut bag that needs Prozac- obscure symptoms couldn't mean that something could really be wrong with me. Silly girl.

    One Dr actually suggested to my husband that if he paid more attention to me, maybe I wouldn't be having these problems!!

    Ahhh, silly woman. But, I digress.......

    I agree that many people do have problems with gluten and do not know it, and many, many ignorant Dr's do not look to many food allergies as well as environmental allergies as a source of problems.

    Touche` for the post. Let the voices be heard!!
  16. xchocoholic

    xchocoholic New Member


    How did you ever come up with that name ? It was hard for me to even type it in .... LOL

    I am sorry to hear you had such a tough time with this.
    I can relate all too well.

    I am hoping that others here will see this and consider it.

    I would have never figured this out if I had not been researching wheat free bread recipes on the internet.

    The NIH has a program out to educate patients and the medical profession about celiac, but it is too slow in my opinion.

    One out of every 100 - 133 people in the US have celiac. And the NIH is saying that most people don't know it.

    I honestly don't understand why all of us know about things like bird flu, but not celiac. HUH !!!

    Hopefully, this will change soon ...


  17. chloeuk

    chloeuk New Member

    I found the info useful and for those of us who can have blood tests done without paying, (UK and Australia)..it will be alot cheaper than going gluten free and also mean that I dont have to suffer without my beloved bread and still get checked out.
  18. penstemon

    penstemon New Member

    I know someone who was misdiagnosed with CFS. But then he was finally tested for gluten intolerance and found out that was what he had instead. His kids had it too.
    I've been tested for gluten intolerance, but didn't have it. But I am allergic to wheat.
  19. xchocoholic

    xchocoholic New Member

    Thanks for replying,

    I understand completely what you are saying about missing your bread. I love bread too,but I don't miss it anymore.

    Your tastes bud will change and you will start craving the new foods you are eating. I crave healthy foods now. And I was a junk food junky ... : )

    I wanted to caution you on just using test results to make your decision to go gluten free.

    I've read that the blood work and the biopsy can come back NEGATIVE and yet a person can have a POSITIVE response to the diet.

    The doctor doing the biopsy can miss the damaged villi if it's not very bad yet and labs don't always reflect what is really going on.

    Based on what I have read, I would do these, but then
    do a gluten free challenge. Just to be sure.

    Ready made gluten free foods are expensive, but, if you eat whole fruits, veggies and GF grains and meats it's actually inexpensive. These foods contain nutrients too.

    I eat a lot of whole buckwheat, quinoa and millet.

    I sincerely hope this helps someone ... xchocoholic

  20. xchocoholic

    xchocoholic New Member

    Keeping this bumped for newbies ...

    "Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food."

    Malnutrition from celiac can cause B12 and iron deficiencies, osteoporisis, weak teeth, seizures, etc.


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