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Please Help Me Help A Friend And Her Daughter!


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8 replies to this topic

#1 Canadian Karen

 
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Posted 17 March 2010 - 09:41 AM

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
  • 0
Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

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#2 2Boys4Me

 
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Posted 17 March 2010 - 09:53 AM

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.glutenfre...celiac-disease/

Dr. Marios Hadjivassiliou and colleagues wrote:
“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.”


  • 0
Linda, Mom to Ty (11 years old)
Ty was diagnosed by blood test June 7/05
biopsy Aug 11/05, diagnosis confirmed Aug 18/05
Mom, Dad and big brother Celiac-free.

#3 Jestgar

 
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Posted 17 March 2010 - 10:13 AM

Autonomic neuropathy and coeliac disease
http://jnnp.bmj.com/.../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....pubmed/20043335

http://www.ncbi.nlm....pubmed/18165163
  • 0
"But then, in all honesty, if scientists don't play god, who will?"
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My sources are unreliable, but their information is fascinating.
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Leap, and the net will appear.

#4 missy'smom

 
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Posted 17 March 2010 - 10:20 AM

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.
  • 0
Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11
Son: ADHD '06,
neg. CELIAC PANEL 5/07
ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08
ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08
Gluten-free-Feb. '09
other food allergies

#5 Jestgar

 
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Posted 17 March 2010 - 10:23 AM

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

http://www.glutenfre...celiac-disease/

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.


  • 0
"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#6 Canadian Karen

 
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Posted 17 March 2010 - 11:31 AM

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!
  • 0
Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#7 marlowg

 
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Posted 07 February 2013 - 03:27 AM

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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#8 cavernio

 
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Posted 08 February 2013 - 09:59 AM

http://europepmc.org...ct/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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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#9 kareng

 
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Posted 08 February 2013 - 10:06 AM

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