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Celiac Disease?! Say it ain't so...

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by invisible ME, Apr 14, 2011.

  1. invisible ME

    invisible ME

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    Hi all,

    Just had an appointment with my GP, who recommends I get tested for CD. To my knowledge, I haven't been tested, at least not in the last 15 years. Or maybe I have been tested, and I don't even know because the tests came back negative (who knows what these MDs are testing for half the time!).

    Here's the thing. I happened to mention some GI issues I'd been having. These symptoms are BY FAR not my worst or most regular...not even in the top five. But my GP said she thought it was possible that celiac could explain all, or almost all, of my problems, although a gastroenterologist was the first specialist I ever saw 15 years ago when I was first sick with ME/CFS. My GP said that at that time, CD diagnosis would have required a biopsy, and I think I'd remember if I had that. I've only been seeing this GP for less than a year, but she's pretty knowledgable and thorough.

    Just to clarify I easily meet the CCC for ME/CFS. It seems that in some adults, CD does not always (or primarily) include the major GI symptoms commonly associated with it. But there's a slew of CD symptoms I (or anyone with ME/CFS) do have... but then that's true for almost any auto-immune disease description I've read on Wikipedia.

    Is it possible to have CCC ME/CFS and celiac?? (These auto-immune-type diseases often seem to appear in clusters from what I've read.) I mean, it would be nice to have an answer, but I'd be pretty peeved to find this out after 15 years.

    Any thoughts/experiences??

    Thanks.

    Really not trying to open a whole misdiagnosis can of worms. :innocent1:
  2. xchocoholic

    xchocoholic Senior Member

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    you have a REALLY good doctor ... here's an article that may explain what's your GP is talking about. There's a ton of info on "theglutenfile" too in case this isn't enough ..

    BTW. I'm a celiac with ME/CFS but I REALLY don't think I became a celiac until 2005 when my digestion got so bad. Before then, I THINK I was gluten intolerant. Not to be a downer but I still have severe allergic reactions to certain foods and chemicals, orthostatic intolerance and PEM. BUT ... most of my other symptoms are gone now ... KOW ... tc ... x

    http://www.cnn.com/2011/HEALTH/04/12/gluten.free.diet.improve/index.html?hpt=C2

    PS ... Minute ... and I mean teeney tiny amounts ... of gluten will cause me to have myoclonus and insomnia at bedtime. Other people with similiar sensitivities report the same over reactive state to gluten. BUT .. not everyone responds this harshly. Hopefully you won't but just in case, I wanted to mention this ... I wouldn't want you wasting time eating all those cross contaminated GF foods if you still felt sick .
  3. Hope123

    Hope123 Senior Member

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    Potentially, it is possible to have any disease with any other disease in the world. That's why it's important to have new or worsening CFS symptoms evaluated rather than relegating it to CFS and why it's important to get preventive care (cholesterol checks, mammograms, etc.) as possible. A potentially treatable cause for a symptom could be found. So celiac and CCC ME/CFS, not surprised if an individual has both but we don't have any data about how common or not CD is with ME/CFS in general.

    HOWEVER, CD does not explain ME/CFS -- i.e. CD does respond well most of the time to a gluten-free diet (there are a few folks with CD who don't) BUT being on a gluten-free diet, while helping some ME/CFS symptoms -- esp. gut related, might not help "resolve" ME/CFS. If you CFS resolves COMPLETELY with a gluten-free diet, you don't have CFS, you have CD or gluten sensitivity. (From what I understand, the disability levels of most people with CD are not severe compared to CFS and CD doesn't invovled flu-like symptoms, sore throats, etc. generally.) While some docs might excluded CFS because you have CD, the original Fukuda criteria allows for CFS diagnosis along with other diseases if treatment of the non-CFS disease doesn't resolve the symptoms associated with CFS.
  4. lucy

    lucy Senior Member

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    Yeah, if you would consider stats, basically it would be impossible that there is nobody with both CFS and gluten.
    I personally get fevers from gluten food, but not always, so I generally avoid it. My test (anti transglutaminase) came negative, but then I was pondering, if the test measures antibodies, and antibodies are produced upon exposure to gluten, then does it mean one has to eat gluten food before the test? The doctor did not tell me so and the only gluten I had was a sandwich a month ago before the test.

    I agree with Hope123 about getting preventive care. Nevertheless it can be hard, eg, my GP was attributing all symptoms to mononucleosis, as if basically anything can go under the umbrella of mono.
  5. Hope123

    Hope123 Senior Member

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    Yes, you are supposed to eat your usual diet (including gluten) before the test for a while.
  6. invisible ME

    invisible ME

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    Thanks all for responding, and for that great info.

    You're right, xchocoholic, I have a GREAT doctor - easily the best I've seen. I've only been seeing her for less than a year and she's already been more thorough than most other docs combined, PLUS she got me on disability. So I am super-duper grateful...though I probably won't be able to keep seeing her much longer (complicated). So I am trying to follow up any leads while I can.

    It makes sense to me that one could have ME/CFS and celiac (or practically anything, though having that recognized is another issue). My GP seemed to think that CD could account for a lot of the fatigue, pain, cognitive issues, etc (in addition to the obvious). I was doubting that the more neurological ones would be helped, but now I'm reading that CD can also cause seizures, as well as numbness/tingling, etc!! At least I'm learning lots of new stuff? And can be activated by a virus??

    My diet contains less gluten than it used to, but is not gluten free by any means, so it seems worth following up on just to be sure. Lucy, my GP said you MUST keep eating gluten before the test, or it could be a false negative. Or, in her words, "Eat a box of donuts." :D

    Thanks again, all.
  7. Gamboa

    Gamboa Senior Member

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    I'm in a similar position at the moment, awaiting a blood test for Celiac Disease.

    I was diagnosed with ME/CFS by CCC definition a year ago and had many tests done to first rule out other diseases. Recently I had a stool test done for IgA glutin antibodies and it came back positive. This is not a test recognized (yet) by medical doctors. When I mentioned the test and its result to my GP she sheepishly asked if, with all the testing I had done over the years, had we not ever tested for Celiac Disease? She immediately ordered the blood test which I am now waiting for.

    I have had bowel issues on and off for years and even went to a GI specialist 15 years ago who did nothing. Needless to say I'll be really mad if I find out I had Celiac all along and not ME/CSF. Or could I have both??

    By the way, here in Ontario Canada, this blood test is not covered by OHIP, the provincial medical plan. Perhaps that is why most GPs aren't ordering it and so many people are going undiagnosed.
  8. Francelle

    Francelle Senior Member

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    It is only of more recent years that there has been greater understanding and acknowledgement of Coeliac Disease occuring in the non-paediatric population. So 15 years ago there is minimal chance that you would have been tested for CD, InvisibleME.

    Certainly the duodenal biopsy and direct visualisation of the villi in the upper part of the small intestine is the optimal way to diagnose CD...however there are other less invasive ways as others have mentioned, such as the IgA tissue Transglutiminase tTG/IgA anti endomysial antibodies & anti gliadin antibody tests.

    Also there is a genetic test to see whether the gene potential is there for a person to have (full blown) CD.

    There are also allergy tests which look for gluten allergies in people rather than necessarily having Coeliac Disease. This is being increasingly recognised as a problem in the medical literature.

    So there are several levels of testing.

    My Gastroenterologist who I see for Gastroparesis tested me soon after diagnosis and I came up negative on the gene testing, so he went no further. I have since had allergy testing at my M.E. doctor's clinic and I came up with a positive gluten response. I don't quite know the importance of the allergy testing result but I have to say I'm treating it a bit casually at present as I need to be convinced that it is significant!
  9. invisible ME

    invisible ME

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    Thanks, Gamboa. I feel the same way - I'll be very frustrated if I end up testing positive, as I've been ill for 15 years without much help.

    I'm also in Ontario. My GP told me the test IS covered by OHIP if it's ordered by a specialist (but then there might be a long waiting period). If you already have a gastroenterologist you see, that would be the way to go. Also, it might be covered if you have private health insurance. Just a thought.
  10. rlc

    rlc Senior Member

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    Hi all, everybody with a CFS, Fibromyalgia or IBS diagnosis should be tested for Celiac, unfortunately the medical profession has been largely asleep on this subject for a long time, it effect about one in a hundred people and there is on average a ten year delay in diagnosis! And is frequently misdiagnosed as CFS, Fibro and IBS

    There is also a belief amongst a lot of doctors and people that its not that serious, it can be very serious, because it causes malabsorbtion of numerous vitamins and minerals such as B12, iron, vitamin D, Zinc etc so people can end up with multiple illnesses all caused by celiac, So people end up with the symptoms of B12 deficiency found here http://vitamins.lovetoknow.com/Vitamin_B12_Deficiency_Symptoms and iron deficiency found here http://www.essortment.com/symptoms-iron-deficiency-46101.html and vitamin D deficiency http://www.antioxidants-4-life.com/vitamin-d-deficiency-symptoms.html and zinc deficiency http://www.improve-mental-health.com/zinc-facts.html etc, B12 and iron deficiencies can be fatal if there not treated, if a doctor doesnt think of testing for celiac then theres no way a doctors going to work out whats going on based on symptoms because all these deficiencies cause so many symptoms, and people get dumped in the CFS, Fibro, IBS group and left to suffer.

    This article explains some of the problems with it http://www.bmj.com/content/338/bmj.a3058.short/reply

    1. Celiac Disease: The Great Imitator
    o Shirwan A. Mirza, MD, FACP, FACE, Clinical Assistant Professor of Medicine
    Auburn, NY 13021

    The article on celiac disease by Roger Jones and Sarah Sleet is well written.[1]
    We will do our patients and the health care system a great service if we put celiac disease on the top of the list of differential diagnoses of many clinical scenarios.
    We all remember that in the medical school we used to call syphilis the great imitator of neurological disorders. I believe now celiac disease should assume that title. I am an endocrinologist and screen for celiac disease likely as frequently as any gastroenterologist.

    Celiac disease is an endocrine cousin: It causes as much fatigue as hypothyroidism. It causes menstrual irregularities likely via nutritional deficiencies.It causes miscarriages (should be thought of in women with recurrent miscarriages), causes infertility (should be thought of before embarking on costly fertility treatments), psychiatric problems such as anxiety and depression, poor memory and concentration via vitamin B12 deficiency or insufficiency.

    Celiac disease causes vitamin D deficiency, in itself another disease mostly missed and it causes severe fatigue, muscle aches and weakness and tremendous bone pains usually misdiagnosed as fibromyalgia. Celiac disease should be thought of in investigating osteoporosis with severe reduction in Z-scores.

    Celiac disease causes unexplained elevation in liver enzymes, including alkaline phosphatase, which could rise partly due to its bone component due to osteomalacia and vitamin D deficiency. celiac disease can cause explained seizures and electrolyte imbalances such as hypocalcemia, when the vitamin D deficiency is severe.

    Celiac disease could cause peripheral neuropaty via vitamin B12 deficiency. Celiac disease can cause skin rash and should be in the differential diagnosis of such disorder.
    Celiac disease is associated with other autoimmune disorders such as type 1 diabetes, and should be in the differential diagnosis of hypoglycemia in every patient with type 1 diabetes.

    Celiac disease can cause low night vision via vitamin A deficiency and every patient with vitamin A deficiency should be screened. Patients, especially women with alopecia should be screened for iron and zinc deficiency, both are nutritional factors in hair growth. Zinc deficiency can also cause dyguisia, recurrent upper respiratory infections, and low night vision.

    Patients with hypothyroidism whose TSH is always high despite huge doses of levothyroxine must be screened for celiac disease provided they take leveothyroxine on an empty stomach without food or coffee or other medications for at least an hour before breakfast.

    Celiac disease could also an underlying cause for elevated homocysteine and abdominal bacterial overgrowth causing even more gastrointestinal symptoms such as pain or bloating.

    Shirwan Mirza, MD, FACP, FACE
    References:
    1. Published 19 February 2009, BMJ 2009;338:a3058 Practice Easily Missed? Coeliac disease Roger Jones, Wolfson professor of general practice, Sarah Sleet, chief executive
    2. Celiac disease. Guandalini S, Setty M. Curr Opin Gastroenterol. 2008 Nov;24(6):707-12.
    3. Celiac disease. Catassi C, Fasano A. Curr Opin Gastroenterol. 2008 Nov;24(6):687-91.
    Competing interests: None declared

    The other problem is that even when patients get diagnosed with celiac, a lot of doctors tend to forget that the patient still has vitamin and mineral deficiencies which should be tested for and treated, some of these deficiencies will correct over time, as your body start absorbing properly but the process can be greatly speeded up by supplements and things like B12 injections.

    In the case of Vitamin D deficiency unless you live in a warm climate and sunbath religiously, you wont get enough vitamin D naturally and again will be left to suffer, and even if you are tested and treated chances are that your doctor will use the out of date reference ranges which are miles lower than they should be and left to suffer again.
    Correct Vitamin D levels are explained in these articles http://www.vitamindcouncil.org/health/deficiency/am-i-vitamin-d-deficient.shtml and http://www.thorne.com/altmedrev/.fulltext/13/1/6.pdf

    It has also recently been found that your immune system is incapable of working without sufficient Vitamin D so your likly to have chronic viral and bacterial infections as well http://www.sciencedaily.com/releases/2010/03/100307215534.htm
    Heres an article about how vitamin D gets misdiagnosed as Fibromyalgia http://www.easy-immune-health.com/fibromyalgia-and-vitamin-d.html#axzz16q2gPmFV

    This is another article that gives more information on vitamin D and the amounts that can be needed to achieve the correct levels http://www.bmj.com/content/336/7657/1318.extract/reply#bmj_el_198052

    1. Vitamin D deficiency
    o Shirwan A. Mirza, MD, FACP, FACE, Private Practice
    New York, USA

    I am surprised that some of our colleagues still question the adequacy of the clinical evidence for the benefits of vitamin D. The reference range of 25 hydroxy vitamin D 75-150 nmol/l in Europe (32-100 ng/ml in the USA) is wide enough to prevent that. In my experience of treating more than 2000 patients with vitamin D deficiency in the cloudy upstate New York, you need to give almost 300,000-500,000 IU of vitamin D2 to raise 25, hydroxy vitamin D by 10 ng/ml. Intoxication with vitamin D ( a serum level of 375 nmol/l or 150 ng/ml)is nearly impossible when patients are given reasonable doses under medical supervision. This unfounded fear of vitamin D intoxication has been cited in European countries like Germany as a reason not to fortify milk with vitamin D. Vitamin D benefits mirror the widespread presence of vitamin D receptors in the body. Most people think that vitamin D impacts only the bones. If this was the case, why would you find vitamin D receptors in lymphocytes, brain, heart, blood vessels, prostate, colon, breasts, thyroid, ovaries, testicles, lungs ...? Many observational studies have clearly shown the anti-cancer effects of vitamin D, its favorable effects in preventing auto-immune disorders such as multiple sclerosis and type 1 diabetes. Vitamin D is crucial for muscle strength, hence the fatigue as a prominent symptom of vitamin D deficiency. Proximal myopathy is a cardinal feature of osteomalacia, which can lead to falls and fractures.

    If you want to see more patients with vitamin D deficiency, look in your own practice: those patients with fatigue, aches and pains, and proximal muscle weakness are very likely to be vitamin D deficient. Those patients who present with atypical chest pains, in whom cardiac causes have been ruled out, most likely have rib pains rather than the fashionable term "costochondritis" (press on the xiphoid process gently to see the exquisite tenderness. Those patients with tender bones (they don't like to be touched) are very likely to have vitamin D deficiency. Vitamin D is a public health problem. It is the duty of governments to revise the reference ranges of vitamin D to make it in line with the numbers mentioned by Dr. Holick. These governments should also update the required daily dose of vitamin D (1000-2000 IU of vitamin D3 a day).

    Dermatologists should soften their stance on sun exposure. 5-10 minutes of daily sun exposure is considered a judicious dose of sun rays for vitamin D production.

    1. Holick MF. Vitamin D deficiency. N Engl J Med
    2007;357:266-8
    2. Holick MF.
    Resurrection of vitamin D deficiency and rickets
    J. Clin. Invest; 2006: 116(8): 2062-2072
    Competing interests: None declared

    If anyones interested in learning more about vitamin D theres a book available on Amazon by the world expert in it Dr Michael Holick http://www.amazon.com/Vitamin-Solution-3-Step-Strategy-Problem/dp/1594630674

    Hope this helps someone
    All the best
  11. rlc

    rlc Senior Member

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    Hi Francelle, I would advise getting the blood tests and maybe biopsy done, genetic testing can be very unreliable for diseases because they often havn't found all the different genes that can cause the disease or even if they have the often don't test for all of them. This happens in ironoverload they only test for the two main genes that they've found that cause the problem, but they have found another 40 different genes that can cause it and expect to find more, they estimate 10 to 15% of cases are missed by rellying on genetic testing, best to be on the safe side and get the other tests done just in case.

    All the best
  12. taniaaust1

    taniaaust1 Senior Member

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    As severe celiac disease runs in my family, Ive been throu all the celiac testing except a bowel biopsy. Celiac disease is one of the things ones doctors should try to rule out as far as CFS goes, its sad that many doctors arent trying to do that. Celiac disease can cause all kinds of symptoms and can be neurological. In recent years they've discovered that not all celiacs have the symptoms which previously they thought all celiacs have (eg some dont have a lot of tummy issues or diarrhea).

    The blood testing for celiac disease is supposed to be 95% accurate (so 5% may be missed). The only accurate test is bowel biopsy to look at your villi etc

    I saw a gasto specialist in regards to Celiac disease and he told me that it can be ruled out by genetic testing as they know the gene for it. In my own case it turned out I do carry the Celiac gene. (so hopefully im not one of the 5% in which its missed).
  13. athomeinRwanda

    athomeinRwanda

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    Hi,

    I'm diagnosed with ME/CFS (CCC). I've tested positive for fructose malabsorption, negative on IgG testing. I did the coeliac serology test and it was negative. However my sister was positive for coeliac using genetic testing (she has Hashimoto's). I now intend to test again for coeliac using the genetic testing.

    I've recently altered my diet - I've cut out all gluten, all dairy, all legumes, all fructose, most carbohydrates (rice, oats, potatoes, etc), anything that is processed in any way. At the moment I only eat cooked fresh vegetables (only certain ones), cooked fresh meat, salt, olive oil, and seeds (quinoa, pumpkin, sunflower, sesame, chia). I drink decaffeinated tea and rice milk. I've noticed a remarkable improvement in brain fog, my energy level is gradually rising, and I'm less sensitive to noise.
  14. athomeinRwanda

    athomeinRwanda

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  15. Gamboa

    Gamboa Senior Member

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    Hi all,

    This might have been mentioned before but testing positive for either the HLA DQ2 or HLA DQ8 gene does not mean you have Celiac Disease, only that you carry the gene and could potentially develop it at some time in your life. According to the Canadian Celiac Association about 40% of North Americans have these genes but only 0,5-1% of the population actually develop the disease. It takes something, such as an illness (ME/CFS?? I wonder) to turn the genes on. (XMRV perhaps??)

    I have now tested positive to the TTG IgA test which, along with the more costly EMA test, are the two best blood tests that can be done to screen for Celiac Disease here in Canada. They are about 90% accurate . I now have to wait for the biopsy for the final confirmation. I too am now wondering if I have BOTH ME/CFS and CD. I guess the only way to know will be time and a strict gluten-free diet. I've heard this could take up to a year.
  16. JT1024

    JT1024 Senior Member

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    I was fortunate to attend a conference where a prominent researcher/clinician presented the latest in Celiac Disease. The researcher/clinician's name is Alessio Fasano, MD out of the University of Maryland.

    Here is a link to the Maryland Center for Celiac Research: http://www.celiaccenter.org/

    Some info and news from the website is below:

    Scientists at the University of Maryland School of Medicines Center for Celiac Research have proven that gluten sensitivity is different from celiac disease at the molecular level and in the response it elicits from the immune system. The research, published online in BMC Medicine, provides the first scientific evidence of a different mechanism leading to gluten sensitivity. It also demonstrates that gluten sensitivity and celiac disease are part of a spectrum of gluten-related disorders.

    In people with celiac disease, gluten sets off an autoimmune reaction in the small intestine. The complex proteins found in wheat, rye and barley trigger the immune system of a person with celiac disease to attack the persons small intestine.

    Unlike celiac disease, gluten sensitivity is not associated with these serious conditions. Common symptoms of gluten sensitivity include abdominal pain similar to irritable bowel syndrome, fatigue, headaches, foggy mind or tingling of the extremities. There is also evidence that a subgroup of schizophrenic patients and autistic children might be affected by gluten sensitivity.

    The autoimmune enteropathy, coeliac disease (CD), is triggered by ingestion of gluten-containing grains. We recently reported that the chemokine receptor CXCR3 serves as a receptor for specific gliadin peptides that cause zonulin release and subsequent increase in intestinal permeability.

    ZONULIN AND ITS REGULATION OF INTESTINAL BARRIER FUNCTION

    Friday, January 21, 2011

    In 2000, the Center for Celiac Research (CFCR) raised the curtain on a new actor in the ongoing drama of autoimmune disorderszonulin and the role it plays in intestinal permeability or leaky gut. Since then, the star molecule has been linked to celiac disease and other autoimmune disorders, including type 1 diabetes, multiple sclerosis and schizophrenia, as well as inflammatory diseases such as Inflammatory Bowel Disease and breast and lung cancers. Zonulin could also play a heros role through the development of an anti-zonulin pill that would give patients diagnosed with celiac disease a treatment alternative to the gluten-free diet.

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