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jessicacope

Symptoms - Unsure if Celiac? Help, please?

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Ok, first of all I'd like to start with the fact that I've not had any testing done but an suspicious of what I'm dealing with to be Celiac.  I'll post a condensed version of my history and anyone who could help with deciphering this would be greatly appreciated.  

Starting in about 2004 when I was 17/18 I had the first weird bout of something I thought at the time was just a really bad stomach bug.  It started out with sulfur tasting burps.  It followed with vomiting until my stomach was completely rid of everything and then diarrhea along with stomach bloating.  This lasted an entire day.  Over the next 8 years I had several more bouts of it.  Not so frequent that anything ever connected in my mind.  I always thought it was a "stomach bug" coming on when I felt the sulfur burps coming.  I'd go into a complete state of panic because I knew the vomiting, diarrhea and stomach wrenching pain would ensue.  

As of the last 3-4 years, especially the last 2 it has gotten much more frequent.  I've realized that it isn't a stomach bug - not sure exactly what it is.  Searching forum after forum over the years the one thing I have found is that a lot of people deal with this.  Some people suspect a specific kind of parasite that sets it off, others link it with too low acid and suggest you take Betaine Hal (digestive enzyme) before meals and others are just not sure because doctors have not been able to help and only suggest PPI's (proton pump inhibitors) like Prilosec, Prevacid, etc.  I will say that when I wake up and feel the sulfur burps, if I grab some Pepto that it seems to lessen the effects.  HOWEVER, this is only masking the underlying problem.  

Now, to also note that over the last couple years when things have gotten worse I have tried to see if I can indicate WHAT I've eaten/drank that may have caused it.  I've accused pork, chicken and even beef... but each gets knocked down because it'll be something else I eat the next time that "sets it off".  My latest theory is gluten.  When I deal with one of these attacks, I have unbearable mid to lower back pain.  Excruciating.  Similar to PMS back pain (mine gets really bad), just much worse and more intense until my stomach is emptied.  

My latest episode hasn't been with the sulfur burps, but rather with a regular stomach bug that I caught from my son.  I was vomiting and had diarrhea, dealing with the normal effects from it and was down an entire day from it.  I didn't eat anything but the following day I woke up feeling good.  My stomach was completely empty and it felt great.  So that morning I ate a small bowl of oats.  Later for lunch, I was out of the house and grabbed something to eat from a fast food restaurant.  Just a burger and fries.  From the second I finished with it, I was starting to feel bloated and miserable (I didn't over eat and didn't even finish all the fries).  Along with bloat, was the feeling that the food was sitting in my throat ALL day.  I ate at 11:30, and up until about 5:30-6:00 that night I still felt like if I tried to bring the food up in my throat I could have and there was no acidic feeling to make you think it was acid reflux.  Later that night the worst of the feeling went away and I had a small bowl of home popped popcorn with some water, but before I ate I took an Betaine HCl capsule.  That's all I had the entire day.  

This morning when I woke up, I'm dealing with the horrible mid to lower back pain, terrible bloating but no sulfur burps.  Not sure if the HCl had anything to do with that or not.  But regardless, all of the bloating and pain I'm having I don't understand.  

Also, not sure if it matters or has anything to do with all of this but from about the age of 20-22 I developed IBS.  It's to the point that I HAVE to know where a bathroom is when I walk into any store.  I rarely go shopping in a store that I don't have to visit the bathroom 3-4 times each shopping trip.  

Am I dealing with Celiac or something else?  Does anyone know?  I don't have thousands of dollars to go from Dr. to Dr. and be told to take Prevacid.  Something isn't right, and I don't need a bandaid - I need a solution.  I'm going to start on an exclusion diet to see if that helps any of the symptoms.

Also, just a question on the side - do people ever see weight GAIN with Celiac?  Because I've not lost anything, in fact I have a very difficult time losing ANY weight. 

Any help would be greatly appreciated.  

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Celiac.com Sponsor (A8):

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You need to see your doc and ask for a celiac blood test to at least determine if it might be celiac, if positive then biopsy can confirm. You can't assume you are celiac as most people aren't. Going gluten-free does mean that folks lose weight unless they were previously eating unhealthy and due to celiac are now eating healthy.  The reverse can happen since gluten-free foods are generally less filling which can lead to eating more food overall and gaining weight.  The key to being fit is eating healthy and exercise...not New Years resolution exercise I mean real sweat generating exercise. Done at least several days a week preferably more.  But first things first, review with your Doctor what's going on and get celiac blood test done as your issues could be based on many different things other than celiac.

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You need to insist on your doc giving you the full celiac blood panel. It is:

Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 


Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG

You must NOT stop eating gluten until all testing is complete including an endoscopy if any of the bloods are positive. This is imperative!

Yes, there are plenty of members right on this site who were overweight and celiac. This stuff of doctors thinking you have to be a bean pole to be celiac is incorrect. Celiacs come in all shapes, sizes & colors.

Your primary care doc can order the blood panel but make sure he orders all the tests I listed. Remember, he works for you not the other way around. If your insurance or pocketbook will cover the testing then there is no reason for the doc to refuse to order it. Be firm. Make sure to get copies of the results when they come back.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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