Acid Reflux: I suspect Gluten and/or Wheat

[SLLRunner]

I just found this forum and signed up because I strongly suspect that the root of my digestive issues could be either wheat or gluten, or maybe both.

I have an endoscopy on February 19, 2016 because I went through a horrendous GERD attack in September/October after a stressful family medical emergency (partner had open heart surgery following an ER visit, he's doing great now). My PCP gave me some dietary changes, which didn't help much, and then I was prescribed Protonix, which has helped the heartburn someone.

In trying to figure out what was triggering such horrible acid reflux, I cut out many foods, including caffeine (regular coffee, chocolate), citrus,and anything else I knew to be a regular trigger of acid reflux.  This has not helped that much at all.

I have had digestive problems since I was a kid. In my thirties, I cut out dairy and things got better, so I was sure it was lactose intolerance. At that time, I changed to soy, but  started having problems again, so I figured I was soy intolerant. I now don't eat soy and only use diary free products (though I have Lactaid milk can have yogurt, real cheese-not processed like Velveta or those cheese slices.

For months, every single morning I was having oatmeal with banana and some kind of berry. I cut out the berries, it didn't help. Thinking I had an allergy to banana, I just had the oatmeal with no banana, and it didn't help. Finally, I cut out the oatmeal and.....that  helped to the point that I didn't have heartburn after breakfast.

I make my own bread once a week, and this last month it's been whole wheat. I was not better or worse as far as heartburn went, but my GERD symptoms continued on. In addition, I have constant allergy symptoms, sore throat, bloating and discomfort,  My stomach still hurts on and off, my stools can change color and I've had some mucous, and I just don't feel really well anymore.

This last weekend, in all my efforts to try and feel better, and following my PCP's suggestions for a better diet, I began to realize that the only thing I had not yet cut out is wheat and gluten. I did some research on the different types of names for gluten other than wheat and barley and malt. Since Sunday, I have had not wheat to speak of, and I've had some gluten but not much.

I feel a bit better. My throat is no longer feeling as sore, I can breathe better, my acid reflux is calmer, and I don't have that bloated feeling in my tummy. In the mornings, that icky acid taste is not as bad, and I'm sleeping a bit better.

I have emailed my doctor with my discoveries, but I have not heard back yet.  I will have my endoscopy on February 19, and I know I have to continue eating gluten (though I have been trying out some gluten free products, which are really good!) so that I don't get a false positive in the event that I could have Celiacs. I hope this is not the case, but I'm prepared at this juncture for anything.

Thank you for having this forum. Any thoughts, insight, or advice is 100% welcome. 

Susan

[cyclinglady]

Welcome!  Gluten may very well be your problem!   The only way to know for sure (or pretty sure) is to test for Celiac Disease (an autoimmune disorder triggered by ingesting gluten and it's not an allergy).  There is no test for Non-Celiac Gluten Intolerance at this time.  But....you must be consuming gluten daily (8 to 12 weeks prior to the blood tests) and 2 to 4 weeks prior to an endoscopy.  

The tests include:

• Tissue Transglutaminase (TTG) IgA and TTG IgG
•  Deamidated Gliadin Peptide Antibodies (DGP) IgA and DGP IgG
• Endomysial Antibodies (EMA)
• IgA and IGg deficiency tests (these determine if the above tests actually work!)

Biopsies (4 to six samples) taken via endoscopy

Consuming gluten daily is critical.  It's about 1 to 2 slices of bread daily (or the equivalent).  I would push for all the celiac tests instead of just the typical screening TTG Iga test.  I guess it is because I tested negative on the TTG tests (still do on follow-up testing) but tested positive on the DGP test.  My biopsies revealed moderate to severe damage.

Here are some links to start your research:

Open Original Shared Link

Open Original Shared Link

So, why bother getting tested at all?  The UK website has an excellent explanation:  

Open Original Shared Link

I hope this helps!  

 

[SLLRunner]

Thank you, Cyclinglady, I look forward to reading the links you provided.

I am eating regular gluten, and looking forward to making my bread today. Even if it turns out I don't have celiac, it seems that cutting back on gluten and wheat these last few days has helped my acid reflux. 

I'm looking to researching more.  Thank you again.

[flightgoddess]

Ask about eosinophilic disorders as well.

[SLLRunner]

8 hours ago, flightgoddess said:

Ask about eosinophilic disorders as well.

Flightgoddess, thank you.  I had to look that one up.  I am sure the endoscopy will include the above and be thorough. I never thought I'd actually look forward to  a medical procedure so I can find out what is going on with my body.

[SLLRunner]

Hello, Everyone!

Here is an update.  Yesterday I had my endoscopy. I am glad to say that the doctor did not see any damage from from the horrible acid reflux, and my stomach and duodenum look normal.  He took several biopsies for celiac and other disease, and one for h-pylori. I was surprised he took one for h-pylori because my blood test for this was negative.  The biopsy results will come back in about 3 weeks, so we shall see.

I really liked the doctor. He sounded knowledgeable, especially about celiac disease. When I told him I am lactose and soy intolerant, and that I suspect gluten might be a problem, he said that even if a person doesn't have celiac disease that he believes gluten intolerance is a legitimate diagnosis. 

I guess now we wait and see what the results are.  I plan on eliminating gluten from my diet anyway to see if that helps me feel better. 

[cyclinglady]

FYI.  My visual on the endoscopy was normal.  My biopsy revealed a Marsh Stage IIIB.  

Hopefully, you'll get results sooner!  I am glad the procedure went well.

 

 

[SLLRunner]

22 minutes ago, cyclinglady said:

FYI.  My visual on the endoscopy was normal.  My biopsy revealed a Marsh Stage IIIB.  

Hopefully, you'll get results sooner!  I am glad the procedure went well.

 

 

@cyclinglady, thank you!  hope I get the results back sooner as well. 

I was glad that the GERD has not damaged my insides.  However, I was sick for several hours after the procedure, which I suspect was partially from the sedative (I was out like a light) and the biopsies. Better today though! 

I will update when I get the biopsies back. 

[SLLRunner]

I received a letter today with my results. I have benign inflammation of the stomach and esophagus and mild chronic gastritis. I guess my intestines are normal: small intestine mucosa with no pathologic diagnosis.  

All I know is not eating wheat/gluten these last few weeks has helped to calm my stomach and acid reflux and I feel much better. 

I'm glad my results are not bad, but now I want to know what has caused my gastritis.