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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Please Help Me Help A Friend And Her Daughter!
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9 posts in this topic

Hello everyone. I have a very good friend who lives in Washington State. Her teenage daughter has been plagued by blackouts for some time now. She has had all the necessary tests and the doctors have come to the conclusion that her daughter has Cardiogenic presyncope and have started treating her accordingly with medications. The problem is that it is not working, and the problem persists, and is even getting worse. I have suggested to her that she tell the doctors her daughter needs to be tested for celiac as my childhood symptom was blackouts. Her doctors basically told her that since celiac is "gut related" and she has no symptoms to suggest that, they aren't doing it..... ARGGHHHH!!!!! Can someone please give me some links to studies that show that celiac is indeed a very real possibility in this instance?

Any help would be greatly appreciated!

Thanks

Karen

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Hello everyone. I have a very good friend who lives in Washington State. Her teenage daughter has been plagued by blackouts for some time now. She has had all the necessary tests and the doctors have come to the conclusion that her daughter has Cardiogenic presyncope and have started treating her accordingly with medications. The problem is that it is not working, and the problem persists, and is even getting worse. I have suggested to her that she tell the doctors her daughter needs to be tested for celiac as my childhood symptom was blackouts. Her doctors basically told her that since celiac is "gut related" and she has no symptoms to suggest that, they aren't doing it..... ARGGHHHH!!!!! Can someone please give me some links to studies that show that celiac is indeed a very real possibility in this instance?

Any help would be greatly appreciated!

Thanks

Karen

Karen, not sure if this will help. I scalped it off another celiac forum.

http://www.(Company Name Removed - They Spammed This Forum and are Banned)/gluten-sensitivity-not-just-for-celiac-disease/

Dr. Marios Hadjivassiliou and colleagues wrote:

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Autonomic neuropathy and coeliac disease

http://jnnp.bmj.com/content/76/4/579.full.pdf

Coeliac disease is associated with numerous neurological

manifestations including cerebellar ataxia, myelopathy,

myopathy, and peripheral neuropathy. This report describes

four patients who presented subacutely with presyncope and

postural nausea. All four patients had biopsy proven coeliac

disease with dysautonomia present on autonomic evaluation.

These four patients comprised 2.4% of patients referred for

autonomic testing in one year. Thus the frequency of coeliac

disease is similar to that reported in idiopathic peripheral

neuropathy.

Some cardiac related articles:

http://www.ncbi.nlm.nih.gov/pubmed/20043335

http://www.ncbi.nlm.nih.gov/pubmed/18165163

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My heart goes out to all. I've been fainting since I was a child and have yet to get any good answer. It's miserable. My DX is vasal vagal but I feel like they don't really know, won't say or just think I'm a nut case. Cardiologist put me on a beta blocker even though all tests came back great. He stubbornly kept me on it despite a strong reaction and many signs that my body wasn't ok with it and I finally demanded to be taken off. SO SO glad I did. MY BP gets very low and takes quite a while to go back up, found that out after one doctor tracked when I was feeling faint, every so many minutes until it got back up to normal. I also had one doctor that tested my blood sugar and found it a little low-that was before the diabetes DX, but I've had symptoms of possible blood sugar issues since I was young. I can only suggest monitoring BP and blood glucose for an extended period, particularly around one of these episodes and see what turns up. Both can be monitored at home with equipment purchased on one's own. Vitamin/mineral deficiencies? allergies? I have passed out both times I've been allergy tested. But I have no clear indication of which allergen, if any, caused it. My allergist called me a complex/challenging case. I do think stress is a factor for me, but I also think there may be other factors. It seems that there is a delicate balance and that the scale is easily tipped.

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I have access to the Lancet article if you want the pdf

Gluten sensitivity is a systemic autoimmune disease with diverse manifestations. This disorder is characterised by abnormal immunological responsiveness to ingested gluten in genetically susceptible individuals. Coeliac disease, or gluten-sensitive enteropathy, is only one aspect of a range of possible manifestations of gluten sensitivity. Although neurological manifestations in patients with established coeliac disease have been reported since 1966, it was not until 30 years later that, in some individuals, gluten sensitivity was shown to manifest solely with neurological dysfunction. Furthermore, the concept of extraintestinal presentations without enteropathy has only recently become accepted. In this Personal View, we review the range of neurological manifestations of gluten sensitivity and discuss recent advances in the diagnosis and understanding of the pathophysiological mechanisms underlying neurological dysfunction related to gluten sensitivity.
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Thank you all so much for all your help in this! My heart goes out to her because they just feel so helpless! It angers me so much that STILL, there are so many specialists who totally disregard the damage the gluten is capable of, and still consider it to be just a "gut" issue!!!! GRRR!!!!

Jestgar, if there is any way for me to get my hot little hands on that Lancet article, I would be eternally grateful! Linda (my friend) wants to be armed with proof of correlation for their next appt.

Thank you all again!

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Check out vitamin B12 and folate deficiency. What happens is that too few blood cells are being produced and therefor not enough oxygen gets to the brain resulting in blackouts. The condition is called macrocytic anemia. It is the result of poor absorption of those vitamins due to the damaged absorption villi in the gut.

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http://europepmc.org/abstract/MED/11379333

"This study confirms the extremely polymorphic nature of this condition that can affect several organs and apparatus without gastrointestinal symptoms"

I can't seem to find anything about fainting and celiac disease though, not beyond mentions of case studies. Did find that low calcium can cause fainting.

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Just an FYI, you are responding to a 3 year old post. Not sure the OP will see your comments.

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    • Thank you! That was the thread I already found and am reading my way through.
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