New Here, Symptoms And Advice

[Jenny516]

Hi,

I will start with a little background.  I have no family members with known celiac.  I have complained and have had stomach issues since I was a kid but told it was nerves.  This was always constantly after I ate.  I remember at school not being able to concentrate because my mind was on trying to keep my stomach pain at ease.  I was diagnosed with a learning disability as well.  As high school came I would get head aches often.  Then the diarrhea started.  That continued through college.  Towards the end of college I started dealing with joint pains and pins and needles in my fingers.  All along still having the stomach issues and diarrhea.  Then the reflux started and I was sent for an upper GI.  I have severe gerd that has damaged my esophagus.  They did not go down to my intestines so I don't believe they would have been able to check for any signs of celiac. 

Well, fast forward to now, almost 8 years later.  Still all the same issues but I have started to take daily probiotics and stay away from milk.  That has helped with the diarrhea.  But I still get tingling and gas pain in my stomach.  I go to lunch just feeling hungry.  Eat a sandwich and will literally feel like my stomach is 5 months pregnant and the gas feels like there is an actual baby moving around. I have a noisy stomach that people sitting next to me can hear it. Painful.  Then goes away and will feel better in about an hour of two.  Then I'm starving again, all just to do it over and over again.  I get itchy patches of skin on my elbows, knees and feet.  I get clumps of dry skin stuck to my sculp.  I also had an unexplained DVT while I was pregnant.  All testing was normal.  I am slightly anemic and I have low potassium which doesn't improve much even with supplements.  I have been dealing with this my whole life and am at a breaking point right now and tired of everything being normal.  Cause I dont' feel normal when I have to live around making my stomach comfortable.

I have had blood work done for celiac and that came back neg several times and I was told that it was my gerd, IBS and anxiety.  yet no meds have worked.

 

I go to the doctors on monday and I'm wondering what I should say.  I have friends that tell me that it is celiac but the testing was negative.  Are any of these symptoms similar to what you have experienced?  Any advise would be greatly appreciated.  Thanks, Jen

[Lisa]

This is the full blood panel that you should have been tested for:

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

 

If not, perhaps you should try the diet for several months to see if it offers you more comfort.  A positive dietary response can be diagnostic in combination,with/ or blood work and endoscopy/biopsy.

[nvsmom]

Ditto everything Lisa said. If you are getting further testing, make sure that you continue to eat gluten or the test will nt be valid.

Once you go gluten-free, a food and symptom journal can be very helpful in seeing patterns and symptom changes.

And welcome to the board.

[Jenny516]

Thank you.  I'm going to the doctors tomorrow to go over once again my symptoms.  I'm tired of the bloated belly.  First thing in the morning I wake up and my belly feels fine and after I eat my stomach looks pregnant.  And the pain can be all around and just plain uncomfortable.  But sometimes it's not that bad and I can brush it off.  I'm going to ask to go over the blood test that they preformed awhile back to see if those test are the same as the ones you described.

 

Can celiac cause your reflux to act up as a symptom?  I have scar tissue in my esophagus from years of reflux.  Between the reflux and the stomach pain, I can be quite miserable.

[nvsmom]

There are a fair number of members that deal with reflux around this forum, I haven't had to deal with it and don't know as much about it. If you search GERD or reflux (in the search tool near the top of the page under the Celiac.com banner) I bet you'll find more info. Or start a new thread with that as a topic. People around here are friendly and I'm sure someone will help. 

 

My morning stomach aches (from pancakes on an empty stomach) always hurt the most, the type where it's hard to stand up straight, but my bloat seemed worst in the evening.... I can't say I miss those days.  I'm glad you have an appointment tomorrow so you can get this moving along.

 

Good luck with the doctor.

[Marlie]

Since you have positive results for reflux, do you follow a GERD diet? You don't mention if you take any medications for GERD. These things may help you. You can also try a gluten-free diet to see if that helps. If none of these things help I would do further investigate your reflux.