• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
0
Canadian Karen

Please Help Me Help A Friend And Her Daughter!

Rate this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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:

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
Ads by Google:


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!

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,932
    • Total Posts
      943,580
  • Member Statistics

    • Total Members
      67,244
    • Most Online
      3,093

    Newest Member
    Tess Laweryson
    Joined
  • Popular Now

  • Topics

  • Posts

    • In Austin, Wildwood Bakehouse and Wilder Wood Restaurant are totally gluten free.  I had the chicken fried steak and gravy and onion rings!!!  Awesome!!!  
    • Hi there I have this exact same thing.. however I don’t have celiac that I know of.. I found this when google searching for what the heck is wrong with my face.  I was wondering if you ever found out.. or if it just went away. Thanks
    • I have read the newbie 101 and have been careful about reading labels. I'm the only one that's gluten free in my household, so they could be contaminating me. I was eating gluten for 6 weeks after my blood test because it took that long to get an official diagnosis and my GP told me to still be eating it for the tests to be accurate. It was probably too soon to retest, but the test was accidentally ordered by the lab. I have been having an increase in joint pain over the last couple months and my rheumatologist ordered lab work. The lab saw the celiac panel had been ordered, but didn't see results so they added it on because they thought it still needed done.  My gut issues are starting to get better, but I'm thinking the joint pain might have been from the celiacs because all of the rheumatoid tests came back normal for the first time in twenty years.
    • Hi and Welcome to the Forum.  I am glad that you are here! As with a lot of things in life, try not to compare yourself to other people. You are trying to be the best version of yourself - not Jill, Annie, or Maya.  People make a lot of foolish decisions in the world and it does not mean that you should do it too.  Also, many people are gluten free for a lot of reasons that aren't celiac. One of my best friends has gluten sensitivity but not celiac.  He eats a lot of food that I won't touch due to possible cross contamination which he doesn't worry about too much.  Be true to yourself and keep your self healthy.  It is so hard, but it's better than getting sick! I hate not being able to partake in yummy food at parties, but I have learned what junk food I can eat.  I will make sure to buy some tortilla chips or Fritos for picnics.  I freeze gluten-free cupcakes to eat when we celebrate birthday parties (I can just take one out of the freezer and go).  I make sure to take a dish to share to potlucks.  I ask permission at restaurants and parties to bring my own food - no one has ever said no, and when there is a time to celebrate, I splurge on something I really like.  Fortunately, there are a lot of gluten-free foods that I really like. Do i miss pizza and really good burger? YES! And sometimes, I still feel awkward, but life is so much more than food.
    • If Small was going to get rid of anything in a takeaway meal, it would be the bread with all its dreaded gluten. However, many scientists and nutritionists argue gluten is not a problem for people who do not have celiac disease or who are not "gluten-sensitive". Massey University senior lecturer in food ... View the full article
  • Upcoming Events