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Please Help Me Help A Friend And Her Daughter!

Canadian Karen

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Canadian Karen Community Regular
Canadian Karen
Posted

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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2Boys4Me Enthusiast
2Boys4Me
Posted

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.

Open Original Shared Link

Dr. Marios Hadjivassiliou and colleagues wrote:

Jestgar Rising Star
Jestgar
Posted

Autonomic neuropathy and coeliac disease

Open Original Shared Link

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:

Open Original Shared Link

Open Original Shared Link

missy'smom Collaborator
missy'smom
Posted

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.

Jestgar Rising Star
Jestgar
Posted

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

Open Original Shared Link

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.
Canadian Karen Community Regular
Canadian Karen
Posted
  • Author

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!

  • 2 years later...
marlowg Newbie
marlowg
Posted

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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cavernio Enthusiast
cavernio
Posted

Open Original Shared Link

"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.

kareng Grand Master
kareng
Posted

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

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      how much gluten do I need to eat before blood tests?

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      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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