Anyone been diagnosed with Celiac Disease?

Discussion in 'Fibromyalgia Main Forum' started by Bacci, May 3, 2003.

  1. Bacci

    Bacci New Member

    Hi All,
    It is almost midnight and i had a very long day today. I had some people over for a wedding shower and am exhausted! One of my guests had been diagnosed with Celiac Disease and was quite insistent that I get tested for it since all of our symptoms are so similar to those of celiac. It is basically an intolerance to gluten and many have it but don't know it because doctors almost never test for it. She has dramatically changed her diet and feels incredibly better. Just wondering if anyone has been tested and/or has any info on their experiences...

    I am just hoping for a good night's sleep right now.

    Hope you had a nice week-end all.

    Cheers,
    Bacci
  2. AmyKaiser

    AmyKaiser New Member

    the more common form of gluten problem-intolerance, is more prevasive than most doctors realise...
    celiac full blown is rare..
    many doctors are realising now that grains are unhealthy...versus what they thought years ago..
    so it behooves your to take this into consideration..
    when i called the National CFIDS line and talked to Gail she told me also that CFS patients deveolop a form of Celiac or gluten intolerance...
    this i am sure adds to more toxins in the system as they now believe is causing CFS...

    Amy
  3. Mikie

    Mikie Moderator

    I have bought several gluten-free cookbooks written by a celiac. I haven't had the time or energy to try any of the recipes. Now that I am on a low-carb diet, I'm not eating much in the way of breads except for the low-carb bread now and then.

    Love, Mikie
  4. tandy

    tandy New Member

    I lasted 3 months~its a very hard diet to stick too.but it did help me! I also lost 12lbs in the first 8weeks!!I was'nt trying to lose but I guess it was an added benefit!(i was happy about the loss)My primary dr. suspected celiac for me cause I had alot of stomach problems,and IBS.
    So I tried it for that amount of time and started to feel alot better....less achy,less bloat,gas,etc... but then I went to a gasterontologist,and he told me he did'nt believe I had celiac,just IBS period.So I went off the diet.Soon the weight came back and so did an increase in my symptoms! I know I started feeling better on the diet so I am going to try it again~ I just have'nt set a date yet!Its hard to give up that morning toast with my coffee.(and bagels,pasta,etc...)Good luck to you if you try the gluten free diet!it does help....it did me~
    Regards,
    Tracey
  5. MemoryLane

    MemoryLane Member

    I have to follow this diet even though I have not been formally diagnosed with Celiac, I am however of Jewish decent and it is very common for this group of people to have Celiac. I can tolerate rice, but definitely not wheat or oats; I have a true food allergy to corn and I seldom ate rye or barley anyway.


    From the website of Jewish Hospital in Louisville, KY:

    Celiac disease

    Alternative Names
    celiac sprue, nontropical sprue, sprue, gluten-sensitive enteropathy, gluten intolerance

    Definition
    Celiac disease is a malabsorption syndrome. The intestine is not able to absorb vital dietary nutrients from foods containing gliadin, an alcohol-soluble portion of gluten.

    What is going on in the body?
    Nutritional considerations are important for persons with celiac disease. People with celiac disease are sensitive to cereal protein found in wheat and other grains. But they are more sensitive to the protein in wheat than the protein in other cereals such as rye, oats, and barley. The protein causes a reaction in the person's small intestine that prevents absorption of essential nutrients from the diet. The defect in absorption leads to the symptoms of the disease and malnutrition.

    What are the signs and symptoms of the disease?
    The symptoms of celiac disease are:
    diarrhea and foul smelling stools
    weight loss
    abdominal bloating
    vomiting
    difficulty in concentrating
    irritability

    What are the causes and risks of the disease?
    Celiac disease is suspected to be a genetic disorder. But exactly how the genetic changes cause the sensitivity to gluten is not known.

    Celiac disease, for example, is common among people from northwest Europe. The frequency among the British is 1 in 1,000 to 1 in 2,000. The frequency among the Irish is as high as 1 in 600. Relatives of people with celiac disease are at higher risk than others in the same population.

    What can be done to prevent the disease?
    There is no way to prevent celiac disease. Genetic testing may be useful in some cases.

    How is the disease diagnosed?
    Celiac disease may be diagnosed by observing the symptoms after an infant begins eating cereals. More often, however, it is diagnosed during the second year of life. The age and onset of celiac disease can vary, though. A blood test may show impaired levels of carbohydrate absorption.

    Stool may be examined for excessive amounts of fat as this is a common sign of celiac disease. A healthcare provider may also order a barium enema x-ray study of the small bowel to check for increased intestinal secretion and clumping of the barium in the bowel. When celiac disease is suspected, a biopsy of the small intestine may be done. The biopsy shows an abnormal inner surface of the small intestine.

    What are the long-term effects of the disease?
    The long-term effects of celiac disease include:
    anemia, which is a reduction in the number of red blood cells circulating in the blood
    delayed growth
    bone loss. Bone loss can cause osteomalacia in adults, with bone pain and tenderness. Bone loss in children is seen as rickets, with bowlegs, a protruding stomach and a pigeon breast in children.
    defects of the nervous system
    inflammation of the skin
    malignant lymphoma

    What are the risks to others?
    Celiac disease is not contagious. It is an inherited disease, but the way it is inherited is not clear. Genetic counseling is useful for those at risk of passing it to their children. The risk for identical twins may be as high as 70%. The risk for other brothers and sisters is 10%. The risk for children of parents with celiac disease is 5-10%.

    What are the treatments for the disease?
    Many of the effects of celiac disease can be minimized with a special diet. People with celiac disease learn to avoid the proteins in cereal. The proteins in wheat, rye, barley, and oats cause the symptoms of the disease. A healthcare provider may recommend a gluten-restricted and gliadin-free diet. Gluten is found in wheat, rye, barley, oats, corn and rice. Gliadin, the substance that seems to cause the symptoms in celiac disease is not found in corn or rice. People with the disease cannot tolerate wheat, rye, barley and oats or any products made with these grains. They can eat corn and rice because these grains do not contain gliadin. Some people may be able to tolerate oats, but this should not be tested until initial recovery has occurred. Some people do not respond to dietary limitations, and may need steroid therapy.

    What are the side effects of the treatments?
    Use of steroids may cause memory loss, bone loss, weight gain, congestive heart disease, or high blood pressure.

    What happens after treatment for the disease?
    Dietary restriction or drug therapy will be needed throughout the person's life.

    How is the disease monitored?
    Celiac disease is monitored by simple observation of symptoms.


    Author: Ronald J. Jorgenson, DDS, PhD, FACMG
    Date Written: 05/23/00
  6. Bacci

    Bacci New Member

    It is now 12 noon and I am finally out of bed after a long day yesterday! I feel like a truck hit me. You ALL know how it is...you pretend to be "normal" for one day and then you pay the price for the next week or more. I will be going back to bed as soon as I am done with this note.I think this is the last time I help throw a party for someone. I am just too tired to do this!!!

    So, I really just wanted to say thank you to you all for posting on this. I have about seventy symptoms (wrote them all down over time) from CFIDS and FM (early stages) and that means that I have to deal with one symptom at a time. I have not yet come to Celiac since I am currently dealing with neurally mediated hypotension. My cardiologist is discussing pacemakers with me--I am 33. So, celiac has been on the back burner. However, I want to thank you all for sending info forward. Memory Lane...the article you attached was just what I needed to give me an initial insight to the illness and what it really is. Although I don't get the "That's IT!" feeling, I know I still should look into this because what's the harm in at least testing for it? Like Tracey I have also done a sort of modified gluten free diet and lost 12 pounds over about three months. My intention was better health and i didn't notice feeling any better but was super happy about my pants not suffocating me at the waist anymore:) However, my friend said that unless you are excessively strict, you will not notice diet changes. She even avoids the small amounts of gluten that may be found in supplements or prescriptions. Life is hard enough, I really hope I don't have this darn thing. Finally, Sandy, could you let me know what tests are conclusive for this and in what order are they done? I am sure they are all expensive but I will have to spread them out over time. I had a comprehensive stool exam done and wonder if I would have noticed anything from those results is I had this?

    So thanks to all of you and those I didn't mention. I would still love to hear more.

    Here's to a day full of sleeping:)
    Bacci

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