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Please Help Me Help A Friend And Her Daughter!
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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

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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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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
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    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
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