Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • 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 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

POTS
0

5 posts in this topic

I am wondering since my daughter is in the process of testing, if any of you have been diagnosed with Postural Orothostatic Tachycardia Syndrome? If so, did it get better with a gluten free diet? Thanks, Jennifer

0

Share this post


Link to post
Share on other sites


Ads by Google:

I don't personally but just did a google on "Postural Orothostatic Tachycardia Syndrome celiac" and maybe this will help get you started.

0

Share this post


Link to post
Share on other sites

I don't personally but just did a google on "Postural Orothostatic Tachycardia Syndrome celiac" and maybe this will help get you started.

I don't have POTS. But, I know that POTS can be from having faulty connective tissue. You might try looking up the Brighton Criteria to see if your daughter might have that.* If so, you might try asking others with POTS and bad collagen for advice. I'd try www.hypermobiity.org. There's a very helpful messageboard there!

*Keep in mind that several things may influence the testing results. For example, young children are generally flexible and therefore often aren't diagnosed until age . . .6 or 8 or so? Plus some variations in flexibility are from race, rather than defect, with Asians and then African Americans being most flexible of those studied. Women are more flexible than men, children more than adults. Still, this testing is more useful than not. And a good, informed rheumatologist should have a good idea of what's normal for one's age, race, and sex, though many aren't so informed on some connective tissue diagnoses and treaments.

0

Share this post


Link to post
Share on other sites

Hi!

I have been just 2 months ago diagnosed with POTS. There are many reason for it. I didn't heard one about the hyper elasticity.

My cardiologist gave me a few pages from this site: http://www.dinet.org/pots_an_overview.htm . I checked everything online (symptoms, causes, etc.)

In my case I have also problem with autonomic dysfunction. I don't have just POTS. I have also postprandial hypotension - low blood pressure after food or water. It looks like problem with parasympathetic nervous system.

I have appointment with a new neurologist- specialist in New York Presbyterian Hospital in January because in my case, nobody knows what is causing my POTS. All common things had been ruled out. Doctors are puzzled. Pills that I tried had no effect, or I had very bad reaction to them. I hope that somebody will find the cause for my POTS, or some pill that will work. I hope.

How severe is yours daughter's POTS? Did she had a Tilt table test? Doctors can prescribe beta-blockers, if it's milder. She needs to drink a lot of water(or Gatorade with plenty of sodium) and eat salty foods (if I feel very bad, I will eat salty potato chips). Also colder weather can help. Our body will raise blood pressure in colder environment. How old is your daughter? I had just Tachycardia when I was 19 and then Beta-blockers helped me.

I'm on gluten and casein free diet for year and half, but my POTS got worse.

0

Share this post


Link to post
Share on other sites

I should have been clearer. I am the one that has it, not my daughter. I am wondering since they are testing her for celiac, if it may be my problem too. I also have Hashimotos. Cause of POTS was never determined. Lyme was ruled out multiple times. In fact I think everything was ruled out except celiac. I never saw testing for that. I do take a beta blocker, and it helps. But it is a band aid. We are all going gluten free and believe it or not my daughter is already doing much better. It has only been 3 days, is that possible? Every now and then she complains about her stomach but it is nothing like before. She is actually playing by herself again and not as clingy. This would just be a miracle if it would help us all. I read somewhere that if the biopsy turns up neg, and the IgG is positive that it is gluten intolerance.

Funny thing is is that no one is complaining about this gluten free diet or what they can/can't have. Maybe it is too early, but I guess when you get to a certain point health wise, you embrace it.

Thanks, Jennifer

0

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
      103,411
    • Total Posts
      917,650
  • Topics

  • Posts

    • Weeks in and feeling no better
      Following my official diagnosis of celiac disease I went gluten free many weeks ago, but I have noticed absolutely no improvement in my health since.  I still get a plethora of muscle aches and pains almost constantly, I still feel tired, I still get lots of headaches and I still feel very foggy.  Is this normal? I see health sites suggesting some symptoms go within a few days of the diet while others take a bit longer but I have had no improvement whatsoever.  Thanks
    • Villous atrophy with negative tTG IgG/IgA, high Gliadin IgA!
      According to endoscopy report, i'm parasites free. but i have high IgG to candida albican, which may indicate recent or current infection with it. i spoke with my doctor, his reply was like forget about candida or SIBO (small intestine bacterial overgrowth, they only appear in immunocompromised patients! 
    • Italian pasta
      Hi! You will have no problems to eat safe in Italy! Food labeling is much better in Europe  (you can fully rely on labels, they list everything). The only wheat celiacs can have is gluten free wheat starch, used in Schär products and many swedish ones. As italian cuisine is based on pasta and bread, there are a lot of gluten free options, most restaurants are aware of celiacs. All kids age 6 in Italy are screened for celiac. You will find lots of options on glutenfreeroads.com   Enjoy your trip!!
    • Continued Symptoms
      Since she is back on the charts her doctor is generally pleased with her condition. I don't know that I've made it clear enough how persistent and ongoing some of this is for her. She improved so dramatically when we made her gluten free, but there are these couple of nagging issues. I'm beginning to wonder if she has some other food sensitivity... Regarding the speech - we homeschool, will the public schools evaluate her anyway?
    • Italian pasta
      My wife and I are traveling to Italy in October and will be eating authentic food over there obviously. I'm extremely sensitive to gluten and extremely celiac. I have heard rumors that people that are celiac don't have the reaction to the wheat pasta in Italy due to the processing of the wheat is different than that of the states. I am curious how much truth to this there is and if anyone has had any experience with this issue or recommendations as to what to avoid. I've never been outside the states and am fearful that I won't be able to eat over there haha
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,543
    • Most Online
      1,763

    Newest Member
    Sally888
    Joined