Pots And Celiac

[AlwaysShaking]

Hi,

I was diagnosed with POTS in November of 2010. Because my cardiologist blew me off for months regarding no improvement in fatigue and dizzy spells while on Proamitine, I blew off POTS (stupid move). During my recent visit with my general doctor, she realized that POTS may not be my only auto immune issue. She had me tested for Celiac disease yesterday. According to her, the two disorders are becoming more common 'roommates' in our bodies.

I avoided gluten foods, with a few exceptions, for 3 days. Then on Sunday, I had snacks at a family party. Within one hour of eating prezels, crackers, and other 'no-nos' I had major stomach pain, gas, and fatigue. My question is how do I tell the difference between gluten intollerant and celiac? After reading online about celiac, the symptoms state weight loss. I experienced the exact opposite and gained weight quickly.

Does anyone else have experience or have heard of these issues?

Thanks for your help,

Jen

[Yolaclover]

I have been testing very strong for celiac (blood tests) but the other tests were mostly neg. inconclusive. I have been referred to a celiac guru in nyc and will let you knoww hat comes of it. Dr. Weimer at Columbia who did my recent autonomic testing seemed to think the celiac had some part in my autonomic issues (that have improved greatly since going gluten free)

[Dizzysillyak]

Thrre are a lot of celiacs who experience weight gain instead of loss. Imho, Your best bet for up to date

info is in theglutenfile. This can he found by googling or via glutenfreeandbeyond.org. I'm sure the difference

is explained on either site.

You've got a great gp. Although, I'm a celiac with oh and pots and I still have this despite being gf. I keep

getting positive lab results for gluten antibodies in my stools tho so I'm getting it from somewhere. I

eat mostly paleo so whatever I'm getting is minor. We have quite a few gluten intolerant people here too. Tc ..d

[AlwaysShaking]

So frustrated right now! I just got the results from my doctor and everything looks 'fine'. While I am glad that I am not a celiac, I still have no answers as to why I am always tired, painful joints, constant abdominal bloating, severe rectal pain and bleeding (sorry for the TMI), and anything else. I have never been unhealthy and just started having this symptoms within the past year. I have had my thryoid checked multiple times, had ultrasounds, tons of bloodwork, colonoscopy, consults with specialists and still nothing. I am starting to feel like I am crazy. As a working mother who is a special education teacher, part-time professor at the university, and a wife, I KNOW I am not nuts. Something is not right and no one can tell me anything. Instead, the doctor's office says everything is fine, without offering any next steps.

Any suggestions from anyone who knows what this is like? UGH

Jen

[kayjay]

I have been gluten free for almost 2 years and my POTS has greatly improved. I was diagnosed with IBS and believe the problem was gluten. If you feel better off of it I would suggest you stay off of it regardless of what any blood test says. Staying off gluten has made my fibro pain better as well as digestive issues. I find with me that I have to have a 100% commitment to get the best results. I used to be too thin and gained weight on a beta blocker. It is a hard diet sometimes but I take it day by day. I don't bake things I can't eat and I try to focus on what I can eat. You may want blood work to see if you have any vitamin / mineral needs. My hair falls out much less and my nails are growing better- other signs of better nutrition absorption.

[kayjay]

I forgot to mention that for me improvement has been slow. make sure to give yourself time to heal before you rule out going gluten free long term. Now if i eat gluten I may have belly pain a few hours later but tend to have other issues 3 days after my mess up. It helps to forgive yourself if you slip up. I ate french bread 2 months ago and was so angry with myself. like most things it is best to let it go and start over. I try to think of each day as a new start to eating well for my body. LOTS of people have problems with gluten so it may be a great place to start healing.

[bygate]

After reading online about celiac, the symptoms state weight loss. I experienced the exact opposite and gained weight quickly.

My wife was diagnosed with celiac just over a year ago. She initially gained weight as well. After being gluten free, her intestinal track healed (takes about 6 weeks for full recovery), and is now absorbing nutrients that were just being passed out of her body previously. Yes, better nuitrition resulted in weight gain ;-) When eating gluten, she was anemic much of the time, due to her not absorbing iron.

From what you described (i.e., being off gluten for several days and then having abdominal cramps after eating bread), it definitely sounds like my wife's symptoms. I guess that does not necessarily confirm celiacs, but minimally, it means you have some level of gluten sensitivity.

As a side note, as a confirmation of his diagnosis, her doctor performed an endoscopy (not sure of spelling -- she was put under and a scope was used to examine her small intestine lining) -- the irritation in the small intestine was the confirmation of the diagnosis -- according to him, the blood test alone was not conclusive. I did not ask though if the reverse applied (i.e., could the blood test come back negative, but the person still have celiac).