Celiac Disease Information and Nutrition

Discussion in 'Fibromyalgia Main Forum' started by Shananegans, Apr 22, 2009.

  1. Shananegans

    Shananegans New Member

    I posted earlier in the month that I felt I was misdiagnosed with FMS. I feel I actually have Celiac disease and I have pretty much proven it. I have been gluten free for about 3 weeks and I feel better then I have in 10 years.

    I am not taking any medications whatsoever and I'm no longer in pain. I was taking MS Contin for 5 years and I have been off it for 2 weeks now with no pain. I have also found in my research that that there are a lot of people who have been diagnosed with FMS to later found out they have Celiac disease, A LOT of people. I can't believe what I have found in correlation between the two. I am pasting an article from the National Fibromyalgia Associations' website, even they see the correlation.

    Celiac Disease—Are You the One?
    by Elaine Monarch

    You’ve heard of Crohn’s disease, cystic fibrosis, multiple sclerosis, and Parkinson’s disease—but have you heard of celiac disease?

    Celiac disease affects more people than all of these disorders combined. Also known as gluten-sensitive enteropathy or celiac sprue, celiac disease affects one percent of the population worldwide—children and adults, male and female. Yet 97 percent of people with celiac disease go undiagnosed. Celiac disease is one of the most common genetic conditions in the world. It is a multi-symptom, multi-system disorder, activated by eating gluten—proteins found in wheat, rye, barley, and other related grains such as spelt and triticale.

    “97 percent of people with celiac disease go undiagnosed.”
    With increased awareness and the subsequent increase in testing for the disease, CD is now known to affect a broader segment of the general population. A study conducted by the University of Maryland’s Center for Celiac Research (CFCR), validated in 2004 by the National Institutes of Health Consensus Conference on Celiac Disease, concluded that one out of 133 people in the United States—a total of about 3 million—are at risk for celiac disease.

    What Happens with CD?

    Historically, the most common symptoms of celiac disease included severe diarrhea, weight loss, abdominal pain and other gastrointestinal symptoms. CD affects not only the gastrointestinal tract, but also the neurologic, endocrine, orthopedic, reproductive, and hematologic systems. Celiac disease may be the result of an evolutionary collision between the cultivation of wheat and the human immune system.

    When individuals with CD ingest gluten, the small intestinal villi (tiny hair-like projections that absorb nutrients) are destroyed. Damaged villi interfere with the body’s ability to absorb basic nutrients, i.e., proteins, carbohydrates, fats, vitamins, minerals, and in some cases, water and bile salts. If CD is left untreated, damage to the small bowel may be chronic and life-threatening, leading to associated disorders, both nutritional and immune-related, and an increased risk of intestinal lymphomas and other GI malignancies.

    Because the symptoms of CD can be so varied, it can be a difficult diagnosis to make. Many individuals are asymptomatic for years, with the disease becoming active for the first time after surgery, viral infection, severe emotional stress, pregnancy, or childbirth. Symptoms of CD may present themselves any time during the life of an individual who is genetically predisposed and is ingesting gluten. Toddlers and children may exhibit failure to thrive, vomiting, bloated abdomen, and behavioral changes. Classic gastrointestinal symptoms may include abdominal cramping, chronic diarrhea, steatorrhea (fatty stools), and weight loss.

    Signs and symptoms in body systems outside the gastrointestinal track may include dental enamel abnormalities, aphthous ulcers, osteopenia or osteoporosis, bone or joint pain, peripheral neuropathy, fatigue, weakness and lack of energy, infertility, and depression.

    CD and FM
    A study by one nationwide celiac disease support group indicated that among adults ultimately diagnosed with celiac disease, 9 percent were originally diagnosed with fibromyalgia and 30 percent with IBS. Since many patients with CD have muscle aches, joint pains, GI symptoms, and fatigue, it is understandable that those people might get a label of fibromyalgia.

    In addition to the tender points exam, the diagnosis of fibromyalgia is based on a number of symptoms that can be due to other conditions—celiac disease among them. This is further evidence that different so-called “silent” symptoms need to be taken seriously by physicians and thoroughly evaluated before a diagnosis of fibromyalgia (or IBS) is given.

    Diagnosing CD
    The rate at which celiac disease is diagnosed often depends on the level of your physician’s awareness and knowledge of the disease. Research shows that celiacs can see a succession of physicians and specialists over an average period of 11 years before the true source of their illness is accurately diagnosed and treated. Typically, that means 11 years of worsening symptoms, new and potentially dangerous complications, confusion, and anxiety.

    There are two steps to diagnosing celiac disease. The first is a blood test that measures the antibodies; the second is the small bowel biopsy.

    “Celiac disease is one of the most common genetic conditions in the world.”
    Certain antibodies are produced by the immune system in response to substances perceived by the body to be threatening, i.e., gluten. Current research indicates that people with CD have higher than normal levels of these antibodies in their blood. If antibody levels are high, it is very likely that celiac disease is present. The diagnosis is confirmed by doing an intestinal biopsy to see if damage has been done to the small intestine—and to rule out the possibility of other conditions. At this time the small bowel biopsy is considered the gold standard for diagnosis of CD for both adults and children. This procedure is performed endoscopically and is usually done on an outpatient basis.

    The diagnosed celiac should have medical follow-up to monitor the clinical response to the gluten-free diet, the treatment for those diagnosed with CD.

    CD is known to occur in 5-15 percent of the offspring and siblings of the celiac. Recent research results indicate that about one out of 22 first-degree relatives of someone with CD have the disease as well. In 70 percent of identical twins, both twins have the disease. It is therefore recommended that family members (both first and second degree relatives) of an individual diagnosed with CD be tested as well. Because CD is an autoimmune disease, it is also suggested that people living with other autoimmune disorders be screened for CD.

    Genetic testing
    Genetic testing can help to determine which family members are extremely unlikely to develop the disease. If family members do have the genes, they should be tested for the antibodies if they develop symptoms or at an appropriate interval, usually every five years.

    Genetic testing can be extremely useful to:

    1. Eliminate family members who initially have negative blood work from repeated testing for celiac disease
    2. Test patients who are already on a gluten-free diet who do not want to be subjected to eating gluten again in order to be tested.

    Living the Gluten-free Lifestyle
    Once gluten has been removed from the diet, the symptoms should start to subside, but the small intestine may take six months to two years to heal.

    Adhering to the gluten-free diet keeps the symptoms under control and prevents further complications. It is vital that all gluten—even the tiniest amount—is permanently removed from the diet.

    “Because the symptoms of CD can be so varied, it can be a difficult diagnosis to make.”
    While the bad news is that celiac disease is a lifelong, genetic, autoimmune disease, the good news is that CD is the only autoimmune disease for which the trigger (gluten) is known. Once diagnosed, individuals who stop ingesting gluten and maintain a lifelong gluten-free diet achieve relief from the symptoms of the disease and find a restoration of health and vitality.

    Elaine Monarch is the founder and executive director of the Celiac Disease Foundation (CDF), which strives to promote awareness and build a supportive community for patients, families, and health care professionals.CDF is actively involved in advocating for patient concerns and networking with other national and international organizations.

    For additional information on celiac disease and the gluten-free diet, please contact the Celiac Disease Foundation at (818) 990-2354 or go to http://www.celiac.org/. You may also email cdf@celiac.org.

    Some Conditions That Can Result From Untreated CD

    * Iron deficiency anemia
    * Osteoporosis
    * Vitamin K deficiency associated with risk for hemorrhaging
    * Vitamin and mineral deficiencies
    * Central and peripheral nervous system disorders (usually due to unsuspected nutrient deficiencies)
    * Pancreatic insufficiency
    * Intestinal lymphomas and other GI malignancies
    * Other food sensitivities
    * Dental enamel defects

    Other Associated Autoimmune Disorders

    * Dermatitis Herpetiformis (DH)
    * Type I insulin-dependent Diabetes Mellitus (5-10 percent of these individuals have CD)
    * Thyroid disease
    * Systemic Lupus Erythematosus
    * IgA nephropathy and IgA deficiency
    * Primary Billiary Cirrhosis

    Less Commonly Linked Disorders

    * Chronic Active Hepatitis
    * Scleroderma
    * Myasthenia Gravis
    * Addison’s Disease
    * Rheumatoid Arthritis
    * Sjögren’s Syndrome
    * Down Syndrome

    All I'm saying is think about what you could get back if you were misdiagnosed and all you need is a gluten free diet? Once my body fully heals, I will get my life back and I want to tell the world. I am looking into making people more aware of Celiac because of my suffering and because of my mom's suffering, I think she has it too. Not enough people know about this and they are suffering because doctor's don't look for it. I think everyone diagnosed with Fibromyalgia should be tested for Celiac.

    [This Message was Edited on 04/26/2009]
  2. m1she11e

    m1she11e New Member

    Wow! Good for you! I think it is great that you want to tell the world.

    I have been "avoiding" wheat and have before just because I know MANY people are at least Gluten intolerant. I know Celiac disease is way beyond an intolerance though. I have alot of gut issues and thought cutting out wheat amongst other things for awhile would be good. It is tough though. I was taking a high priced Glutamine supplement to help heal my gut. Then I looked on the label and noticed it was made from "red wheat berries." I emailed the company and they said that in the processing so little Gluten remained that it would be fine for Gluten intolerant people but not for Celiac. So, I can imagine complete elimination will be tougher than I thought.

    Im gonna try it though. After your story, I think everyone should. I also wonder if people with Celiac for a very long time would wear down their immune system and be more prone to some of these pathogens we see with CFS/FM?

    Thank you!
  3. shelbo

    shelbo New Member

    I was thinking of excluding gluten

    A) Because I read recently that gluten and casein allergy are often pre-cursors to MCS (I would do anything to eradicate or even improve my chemical sensitivity) I read this on ei resources.

    B) Because a few years back I tested positive for an intolerance to milk products and I just read the other day on the net that those who have problems with gluten also have problems with milk

    I am put off excluding gluten because everywhere I've read that you lose lots of weight but I have put weight on...

    What made you think you were gluten allergic? Did you have specific symptoms that rang bells for you?

    Funnily enough, I just posted a message here asking for simple gluten-free lunch ideas should I decide to try.. I have no idea what I'd eat for lunch as lunch always involves a sandwich! :)

    Thanks! Shelbo :)
    [This Message was Edited on 04/23/2009]
  4. Shananegans

    Shananegans New Member

    The main thing that made me think of Gluten intolerance or Celiac in my symptoms was first when I became allergic to other foods I had eaten all my life. This definitely rose an alarm for me, why would I all of a sudden at 25 years old become allergic to rice? So I started doing research online and found out about Celiac. I had never heard of it before that. I have had stomach issues since I was 10 and nobody seemed to care, they told me it was normal. Even then I knew it wasn't normal but even my mom couldn't get anyone to listen.

    After reading about Celiac and food allergies, I started paying attention to what I was eating and when I felt at my worst, I realized bread was a huge issue and then pre-prepared frozen foods, like pierogies (one of my favorites!), I would pass out after eating anything like that (complete exhaustion) and oh the stomach issues... they would just get worse. Sometimes I would be out for days, not able to do anything or stay awake for more than a few hours. And the muscle pain would become so intense, the MS Contin I was on wouldn't even touch it. I would pop 4 to 6 ibuprofen on top of the MS Contin and still be in pain.

    Once I stopped eating gluten, preservatives and most dairy, I felt like a new person. Until a few years ago, I had no idea how much food can mess up your body if you are eating something your body doesn't like. And my doctors never even looked at this as a possibility, nor did they care once I found it.

    There are breads you can eat that are gluten free, lots of them. They take some getting used to as they are not your typical white or wheat bread, but once you get used to them, their not so bad. If you have any Co-ops or health food stores in your area, they can help you get off gluten. It's really not as bad as it seems at first. Of course it's a little complicated for me because I'm also allergic to rice so I have to be more careful then most, but if you don't have that allergy, it's really just a matter of changing the way you look at food. There are tons of breads, pastas, bagels, everything gluten free. You don't have to change the food you eat, just the brands of food really.

    Please feel free to let me know if you have any other questions. I am more than willing to help! I'm walking my mom through it right now too, as Celiac is hereditary and chances are if I have it, she does too. She was also diagnosed with Fibro and has all the same symptoms I do.


  5. shelbo

    shelbo New Member

    I'm so glad you feel better! :) Did you have the the typical weightloss? My stomach blows up from bread and when I comfort ate (lots of wheat products and chocolate when my dad died four years ago) I put on over 40lbs! I have lost some of that mainly bu reducing sweet stuff like chocolate...
    I don't know if celiac and weight gain/ inability to lose weight can be a symptom, do you? Everywhere I read that weightloss is typical? Do you know if gluten allergy can also lead to weight gain? Thanks Shelbo :)
  6. Shananegans

    Shananegans New Member

    Celiac can lead to weight gain, and it causes massive bloating. Right now I am about 60 lbs over weight, most of which I gained in the last year after going back to eating gluten. I have the buddha belly thing going on too, constantly bloated. From what I read the weight gain is caused by the body not properly disposing of waste, so your body starts to recognize waste as fat and stores it. After a while you end up toxic and you just get sicker.
  7. shelbo

    shelbo New Member

    That makes sense - this is a little embarrassing but I go to the toilet at least once a day, sometimes up to 3 tiimes..I don't know how I could be stockpiling toxins when I go so often.... How mortifying *blushes*
    I have the buddha belly though! Thanks! Shelbo :)
  8. street129

    street129 New Member

    what is the meaning of gluten.
  9. Shananegans

    Shananegans New Member

    I'm with ya on the bathroom thing. One thing you learn with all this is to no longer be embarrassed! hahaha. I too wonder how I could be toxic with all the "dumping" I do, but apparently it happens. No pun intended. lol!
  10. Shananegans

    Shananegans New Member

    Gluten is a protein found in cereal grains such as Wheat, Rye and Barley.
  11. Shananegans

    Shananegans New Member

    They have found that Celiac occurs most in European type areas where a lot of commercial bread products are consumed such as America, England, etc. A Mediterranean diet is a great way to avoid gluten!

    I love your breakfast. People think I'm weird because of things I eat for breakfast sometimes, good to hear I'm not the only one. :)

  12. shelbo

    shelbo New Member

    Ha ha! :) Thanks! I'm thinking of starting gluten-free next week so I can get an eating plan drawn up. I will look into the Mediterranean diet you mentioned in your latest post in this thread.
    I had lots of blood tests done again last week (doc agreed I should be tested for thyroid, auto-antibodies (not sure what this is), celiac etc to see if anything is off) but even if the test comes back negative for celiac I will still try the diet, I think..
    Do you also exclude milk? I read that those with celiac disease also have problems with milk... Just wondering... You might feel even better if you cut the milk for a while too?
    Shelbo :)
  13. Shananegans

    Shananegans New Member

    I am also lactose intolerant so I try to avoid dairy as best as possible. But don't torture yourself if you don't have to. Start with the gluten and go from there. Cheese is hard to give up! hahaha.
  14. shelbo

    shelbo New Member

    Cheese is a passion of mine! :D
  15. hugs4evry1

    hugs4evry1 New Member

    Thanks for the timely post. We're having my husband tested in May for Celiac Disease.

    I found a connection when I was searching for information on low iron stores, both he and I were dx with this. I ran across an article on low iron stores and RLS which can point to Celiac. He has both....I think it was a miracle that I found this information at just the right time.

    Low iron stores can mimic a bunch of our diseases too or just make life that much harder on a day to day basis.

    I wish we had a board for Celiacs to use.....gluten is hidden in so many foods. Wheat flour is used to make shredded cheeses separate for example.

    We're trying to help him with glutens prior to his testing yet I know that we can't avoid all of them to help his test. Poor guy.

    I sincerely hope this special diet continues to help you feel better so you can begin to get your life back, and I'm hoping the same for my poor hubby.


  16. Janalynn

    Janalynn New Member

    Just curious - were you not tested for this before you were diagnosed with FM?

    That was one of the first things my Dr. tested for to rule out.

    I think that any Dr. who doesn't test for Vit D., Celiac, ANA (RA, Lupus..others) before giving a diagnosis is not being very responsible.

    I'm so glad you found what has been the cause of your problems and are now feeling so much better!!! That's fantastic.
  17. Shananegans

    Shananegans New Member

    There are a ton of celiac boards online. It would be nice if Prohealth had one too tho, since we are all here anyways! Maybe I'll suggest it. I've made it my personal mission to educate about Celiac and how it is being ignored. I'm getting involved with organizations and trying to figure out where to start.

    I hope things turn out well for you and your husband. RLS was one of the symptoms I had too. Since I've been free of gluten, the RLS is gone. Gone after 10 years.

    Now I just have to deal with the anger of losing my life for 10 years because of ignorance. I had no idea how hard it would be to be well again after being sick for so long. I don't even know where to start! But I am happy I found my answer, and I hope you do too!
  18. Shananegans

    Shananegans New Member

    I was not tested for this before my FM diagnosis. I was barely tested for anything outside of Lupus, Lyme, MS and neurological issues.

    I agree that a Dr. who doesn't test for the things you listed is very irresponsible and to be honest, I'm looking into doing something about that. I lost 10 years of my life needlessly and I'm only 29 years old.

    Now I have to work my butt off to get it all back and I'll admit it, I'm angry. But I plan to use my anger for good, to help others who are being ignored. Dr's that don't pay attention need to answer to someone and I'm going to find out who that someone is.

    I even saw a CFS specialist and this never came up as a possibility. It's a sad state we are all in.

  19. gapsych

    gapsych New Member

    I was tested for what I thought was a complete panal for celiac. Is this how it works, that there is more than one blood test? Also the ANA, B12, Vitamin Lyme. I am sure that there are other tests.

    Do you go to a rheumatologist? They should know about these blood tests, at the least.

    Fortunately the only thing that showed up was the low ferritin and B12. I took weekly B12 shots but I did not notice a difference. I did notice somewhat of a difference when my ferritin became normal.

    Good luck.

  20. shelbo

    shelbo New Member

    I'd love to know this too.. I have just had a blood test for celiac and it was just one blood test. Even if it comes back clear though I am still trying gluten free for a while since you can get false negative results...

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