• 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

Rate this topic

Recommended Posts

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

Share this post

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

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.

Share this post

Link to post
Share on other sites


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.

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

Share this post

Link to post
Share on other sites
Ads by Google:

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


  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
  • Popular Now

  • Topics

  • Posts

    • Yeah someone else said a few weeks ago that there local manger was very antimate that NONE of their shakes with celiac safe....as pointed out if one shake has gluten.....they use the same shake mixing machine...so THEY ALL will have gluten at that facility.....
    • I just saw your profile says thalassemia. My doc blames part of the microcytic anemia on thalassemia trait even though all my thalassemia gene tests have come back negative (and I don't have the right ethnic background). In a way I am hoping it is a FODMAP (carbohydrate) sensitivity instead of a gluten allergy because at least with the FODMAP you just have to stay low FODMAP and don't have to worry about crumbs and gluten cross-contamination like with celiac. I will check back in in 6 months once I see whether there are specific foods I can't eat or if it really does come down to gluten  Thanks for your support!!
    • Good for you for trying to manage your health.  My only suggestion would be to find another doctor.  Obviously, he does not even follow standard recommendations for screening.  I would worry that he overlooks other things too.  It never hurts to get a second opinion.  Second opinions have saved my family from unwanted surgeries and incorrect treatment.   The IgA (Immunoglobulin A) Test, in the case of celiac disease testing,  is a control test.  If he had ordered it, you would have known if the results are valid or not.  Now you are left in diagnostic Limboland.  Again, my TTG was negative it has never been positive even in follow-up testing.   You can go gluten free for life.  My hubby did that 17 years ago some 12 years prior to my diagnosis (per the advice of his GP and my my allergist).  But he will be the first to tell you that I get way more support from family, friends and medical. I wish you well!  
    • Okay so I had a peanut butter milkshake from steak n shake last night. I'm nearly positive that every thing else I've had recently has been gluten free. I have been feeling like my stomach is acting up a bit lately, but after this milkshake it is so much more intense. I considered maybe I'm sensitive to dairy too, but in the last few days  I've had plenty of dairy that didn't make me react  like this. The steak n shake website didn't list any real specifics on ingredients for milkshakes. I read in other forums that some shakes use a malt mix or syrup ( which I didn't see mentioned on the site), but it is corn based. I called the my local steak n shake and the guy said he is "pretty sure" it's corn based.  I called the customer service line and they couldn't tell me if it was gluten free or not. I found ONE listing on a website that said all shakes were gluten free expect peanut butter and one other flavor. I know this seems like a lot for one shake, but I'm so tired of not knowing what makes me sick. Has anyone else had an experience with this or has anymore knowledge about steak and shakes products?
    • So my tTG-IgA result came back negative. Doc did not do the total IgA so I could be in the 2% false negative. However my ferritin continues to fall (at 25 now so getting borderline to need another iron infusion, 6 months ago it was 50) and reflux was keeping me up at night so after the blood test I went on a gluten free and low FODMAP diet. 6 days later my reflux is gone! I had no idea it could work that quickly. I still feel like there is a lump in my esophagus and have a bit of difficulty swallowing (think I still have irritation in that area) but no more acid and regurgitation! Also have not had a single episode of gas or urgency or days with 8 BMs.  It has only been 6 days so maybe I am just having a good spell but am going to continue gluten free and low FODMAP for a month and then see if there are any FODMAP foods I can eat (but not gluten unless my doc decides I should have a biopsy) (I miss pears and apples). I guess the real test is to see if my ferritin levels start to go up-testing again in 6 months. The diet is very restrictive but worth it if it gets rid of the reflux and other symptoms. BTW post-menopausal (and before that I had an IUD for 10 years TMI) so no periods to blame for chronic microcytic/hypochromic anemia. Doc says "that's normal for you, you just don't absorb iron very well".
  • Upcoming Events