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Celiac disease misdiagnosed as CFS, IBS, etc etc ...

Discussion in 'Other Health News and Research' started by xchocoholic, May 2, 2010.

  1. xchocoholic

    xchocoholic Senior Member

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    Here's the latest on celiac disease from the NIH. I didn't see a date on this article but this info has been on the web since at least 2007 because that's when I first found it.

    I just copied this in so that those of us with tracking problems could read it easier.

    FWIW. This article doesn't discuss non celiac gluten sensitivity but it can result in the some of the same problems as celiac disease. See www.theglutenfile.com for details ...

    http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

    We see overweight celiacs in our support group all the time. Most doctors probably still don't realize this is possible since celiac was once thought to mean that all celiacs were thin or malnourished.

    I wanted to make sure those of you who's CFS started with a virus saw this. My CFS (nuerological problems, FM pain, etc etc) did too and it wasn't until 2005, that I discovered that I was a celiac.


    I think this is why I haven't healed as well as others. Not that this is uncommon. We see very sickly celiacs in our support group all the time who are GF but not responding.








    The locations of DH isn't set in stone. I always get a few DH spots on my abdomen if I've eaten any gluten.



    A lot of us are finding that even the certified GF oats are causing digestive issues. IMHO, I'd forget about replacing your old crap foods with new crap foods and look for healthier foods ...

    This falls short of the GF requirements we celiacs need. The FDA hasn't come up with what it considers an allowable gluten content for foods labelled GF. I just completed an FDA survey on this last month.



    For More Information

  2. brenda

    brenda Senior Member

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    Thanks for that xchoc. After excluding first gluten and then all grains from my diet, I see that I have had this condition all of my life and I think it is the underlying reason why for example I caught Lyme from a tick bite when healthy immune systems may fight it off, why a pesticide exposure affected me so badly and why I have not been able to detox mercury from my system.

    When I went gluten free I was using those gluten free bread products but once I saw that rice was also a problem, I stopped all grains and this was a good move because the foods I am eating are nutrient dense and more natural in fact nearly a raw diet and I have improved so much more quickly so that I have about 4X the energy and am feeling so much better instead of that drugged heavy feeling. I don`t think it is good to use those products as all flours are like glue in the system and we want to get the villi healed as soon as possible and not keep the system clogged up.

    I know now that it is hereditary and my mother had autoimmune problems - arthritis, osteoporosis, Sjgren’s syndrome and IBS and members of the family also had mental health problems. My sisterand brother had autoimmune problems and my children. Some of the problems I had for as long as I can remember like lumpy painful breasts and foul stools and constipation have suddenly gone which amazes me. I did improve a lot on a macrobiotic diet but was still having gluten now and again in the form of seitan. Now I am 100% free of it but it took some time to get here.

    So rather than think that it is misdiagnosed as ME I htink that it is the underlying cause for a number of people. Not sure how much healing can take place once it is excluded, but the human body is amazing in its ability to heal once the underlying reason stopping it is taken away.
  3. girlinthesnow

    girlinthesnow Senior Member

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    Thanks xchocoholic for this comprehensive thread.

    I came across this link elsewhere here yesterday but too brain fogged to remember where.

    Clinical, radiological, neurophysiological, and neuropathological characteristics of gluten ataxia

    Dr M Hadjivassiliou MRCP a , RA Grnewald DPhil a, AK Chattopadhyay MD b, GAB Davies-Jones MD a, A Gibson PhD a, JA Jarratt FRCP b, RH Kandler MD b, A Lobo MD d, T Powell FRCR c, CML Smith FRCPath

    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(98)05342-2/abstract

  4. brenda

    brenda Senior Member

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  5. xchocoholic

    xchocoholic Senior Member

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    Thanks Brenda,

    I totally agree with this, I was just using the words the NIH used. Isn't it also amazing how our bodies can adapt to being poisoned continously by gluten and still function at any level ? And how we can "function" on such low nutrient levels ? Makes me wonder how well most of us are actually "functioning" ... I'm happy to hear that this is working for you.

    Thanks girlinthesnow,

    You may have found that at www.theglutenfile.com ... Cara has been working for years to maintain a record of all the studies she's found on gluten. She's one of the ones who helped me figure this all out too.

    Ataxia is just one of the many nuero problems that have been found to be caused by gluten. Dr. Hadjivassiliou proved that gluten could damage the brain causing gluten ataxia though ...

    Here's a book that may help some of you understand this better. The author of "Recognizing Celiac Disease" was recently at my support group and gave a lecture on copper deficiency. Here's a link to her book ... I didn't buy it because I have a good understanding of how this works now but I looked on line and it has some good references. I think I saw it cheaper too ...

    http://www.amazon.com/Recognizing-Ce.../dp/0978862643

    I thought "The G-Free diet" diet by Elisabeth Hasselbeck was good though. If you want to learn more about leaky gut, any of the books by DAN (Defeat Autism Now) authors are good. "Healing the 4 A's" comes to mind ...

    TC ... X

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