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A Pill for Celiac?

No. There is no pill for celiac disease. Could this be what makes it one of the most misdiagnosed diseases in our country?

If doctors and drug companies made money from gluten free cookies, perhaps we’d have more thorough screening. However, since there is no profit-making pharmaceutical remedy for this disease, it seems that much of the medical establishment has been remiss in treating people suffering from this fairly common malady –some studies show that 1% of the US population has celiac disease.

In today’s Los Angeles Times, Heather Abel discusses the angst-filled journey to discovering she had celiac. She also touches upon the romance between docs and big pharma and how this unholy alliance makes celiac such a “challenging” disease to diagnose.


posted on May 27, 2007

9 comments leave a comment

  1. angie romanda

    Please can some one help ?can celiac’s disease affect a bladder. For weeks now I have been suffering so bad I can’t seem to keep any fluids in my body all night I go .I am so tired and the doctor’s don’t help plus I have pain all the time in bladder area.

  2. Dear Angie-

    This is definitely far beyond my area of expertise. Maybe you could put this up on the forum and someone might be able to give you some advice. If it was me I would find another doctor.

    I am so sorry that you are in pain.

    Elana

  3. paula

    Is there an organization for young adults (college age) with celiac disease? I am hoping that there is something in Boulder – maybe even an organization on campus – thanks

  4. candace

    I highly agree with this statement. For years I had suffered from fatigue and other problems. I felt as if I had no energy to get out of the bed. Every day at lunch time I HAD to sleep. If I did not I could not make it through the rest of the day. I was so exhausted that it hurt. My thyroid felt as if it was swollen. Doctors wanted to put me on antidepressants but I knew that this was not the problem. I went from doctor to doctor. they all ran blood work. Blood work always came back negative, including my thyroid test results. I decided to visit a homeopathic doctor, a kinesiolgist. She is the one who finally gave me answers. I am a celiac. I also suffer from thyroid disease and diabetes. I learned that food can be used as a remedy and a cure for lots of issues. Instead of putting a bandaid on the symtoms (while the problem still remains), why not work hard to get rid the problem. I have never felt better. It was hard at first. At my wedding I did not eat my wedding cake. However, I recently began to embrass my condition and view this as a chance to be creative.

  5. Paula -You can try Boulder County Celiacs, I’ve heard good things about that group. Also, I will be speaking at the Pharmaca on Pearl Street about celiac disease on Sept 17. Given that I am probably twice your age, I’m not tuned into any organizations that are for younger folks like yourself here in Boulder. Perhaps a google search might lead you in the direction you are looking to go. Please stop back here and let us know what you find.

    Candace -I so agree with you, the healing process really is a journey and as you mention, for some people an opportunity to be creative.

  6. Angela

    This is unfortunately so true. My daughter went undiagnosed for 8 years and her health became so bad we had no idea what to do. When we moved we were fortunate enough to befriend a nutritionist who suggested allergy testing which got us on the road to eventually testing for celiac.

    For Angie, if you want to be tested for celiac, generally, you have to ask your doctor- I was raised to never question the doctor and never try to ‘self diagnose’ or ask for specific testing- I have learned that I know my body best and doctors that are specialized in one area more often than not completely disregard other areas of the body.
    Another thing you should know is that just because oyu do not test positive for celiac does not mean that you are not gluten intolerant – my oldest had severe symptoms and tested negative for the celiac while my youngest has no symptoms but tested positive for the celiac gene- there are at least 2 other genes related to gluten intolerance and most testing does not look for this- the best and most helpful testing I have found is through enterolab.com – it is spendy but my insurance company reimbursed me and it was well worth it for the knowledge I gained regarding my daughters condition. She is now healthier than she has ever been in her life.
    If nothing else- you can do an elimination diet and journal the results for yourself.

  7. Angela,

    Thanks so much for adding your experiences to this post. I really appreciate it.

    Elana

  8. Jamie

    Hi Elana,
    I’m so happy I found your blog — I’m a 27 year old woman recently diagnosed with ulcerative colitis, and have placed myself on the same diet restrictions that you have: no grains, no soy, no gluten,(but some dairy). Feels like kind of a lonely way to eat so far, but I’m sure I will get used to it and be better for it.

    I’m still trying to figure out the sugar portion of my new diet. I’ve noticed your recipes don’t call for any honey — do you avoid honey? Have you found agave nectar and stevia to be more favorable/tolerable alternatives? I’d really appreciate your insight.

    And thanks for your blog. I will be a regular reader from now on.

    Best,
    Jamie

  9. Jamie

    Elana,

    Sorry — you can disregard my email from earlier, about honey. I just read on your FAQ page that you avoid it due to its high glycemic index.

    Thanks again,
    Jamie

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