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My Intro~ Can You Relate? Am I In The Right Place?

soberose1

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soberose1 Rookie
soberose1
Posted

My first post

Let me give you all some history. I will TRY to keep it simple, which seems impossible.

I had my gallbladder removed emergency style in 05. They didn't do something right and discharged me while I was still in pain. I went back to the ER 3 days later for them to say whoops we did not clean the sludge out of your bile ducts. fast forward to may 08. I doubled over in pain in my upper right ab. ER said the area around where my gallbladder USED to be was inflamed, then gave me a choice. Stay for an ERCP or see if it goes away on its own. I choose to go and left with a list of foods to avoid. GI #1 did a ton of tests, I eventually had the ercp and was told I had a biliary stricture, along with a sphinterectomy which is a treatment for sphincter of oddi dysfunction. After the ERCP I started having new symptoms and only a lessing of the original. 3 different trial meds for IBS, still no better. GI # 2 said the next step was to stint the pancreatic duct...Well I got pancratitis and was inpaitent 5 days. Gi #2 sent me to the university and the next couple months are a blur of test after test after test. I was sooo sick my Mom moved in to care for my kids. I did have the colon biopsy for celiac disease but it came back negative. I had an EUS to look at the pancreas and was told that I have 2 signs of chronic Pancreatitis, but it should NOT be causing my symptoms. (My father also has chronic pancreatitis, it can run in families) It was clear they had no clue what to do, recommended I continue the enzymes, reglan, and go to a shrink... HA! ( any thoughts how one can psyche themselves into having chronic diarrhea??)

I found a functional medical doc and did the nutrional testing. Doc said it was the worst he has ever seen. No matter what they said at the university~ clearly my pancreas was not working right. HE specifically asked about celiac, but we poo pooed that due to the negative test results.

I went back to the university last month and they wanted to do an EGD with another biopsy for wheat, along with a list of other tests (but none looked at the pancreas again) My mom found the entrolab and IT took some time for her to convince me, sending me artilces about negative test when your not eating gluten...I had been on a liquid diet for at least 6wks when they took the biopsy, bananas b4 that. We decided there was not much harm in putting off the tests and looking into Gluten whatever..(I had 17 procedures inside 8 months last year, I am a little burnt out, and broke). So the results came back~

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Anti-gliadin IgA: 18 Units

Fecal Anti-tissue Transglutaminase IgA: 11 Units

Quantitative Microscopic Fecal Fat Score: Less than 300 Units

Fecal Anti-casein (cow's milk) IgA: 9 Units

HLA-DQB1 Molecular analysis, Allele 1: 0201

HLA-DQB1 Molecular analysis, Allele 2: 0602

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

I cant make any sense of this other than the paragraphs at the bottom telling me to go gluten-free.. I know IT will be a while B4 I know if removing gluten is my fix, I truly hope it is.. better than nothing.. I have read that the pancreas can be damaged in celiac disease?? I am 30, pretty sure i should not have any damage on my pan.. Anyone else have these correlations? Am I grasping at straws here? Now that I have been reading up on celiac disease, I will say I have itchy bumps on my elbows..for as long as i can remember. They are not red, just raised and itchy. My life, for almost 2 years now, has pretty much consisted of nausea, diarrhea, upper ab pain, and bloating. I have lost a total of 130 pounds. ITs a roller coaster, somedays I just need to lay in bed and I always go back to a liquid diet when I 'flare', just like they told me to do...even thou I should not be experiencing these symptoms, HA!

This is day three of gluten-free, yesterday I had a normal BM ( and yes I was on the phone calling friends to share the good news). But today it was back to diarrhea. Pain is the same, nausea is WAY bad, worse than normal. I even threw up today, which does not happen to often. So I am depressed, confused, and really don't know what to think anymore. Thanks in advance for any comments

~C

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nora-n Rookie
nora-n
Posted

Hi, you have the main celiac gene DQ2, the DQ2,5 type (the 5 comes from the alpha chain 0501 that almost always comes with the 0201 beta chain, ; enterolab does not test for alpha chains)

and the gluten sensitive DQ6 gene, which is part of the gltuen sensitive DQ1 gene (DQ1 is the old name and was later split into DQ5 and 6)

And, to add, pancreatitis is not an unusual prensentation of celiac.

Some celiacs get pancreatitis every time they get accidentally glutened while on an otherwise strict gluten free diet.

The antigliadin was high and the cows milk antibody was very high close to positive (we have seen that a lot here)

Yes, ordinary celaic tests will be negative if you were not eating a lot of gluten , and you obviously were not.

Was the Enterolab test also totally off gluten?

I assume your biopsy was from teh small intestine, not the colon....and it will be negative iff off gluten. Doesn't take a long time off gluten either to be negative.

soberose1 Rookie
soberose1
Posted
  • Author

Hi, you have the main celiac gene DQ2, the DQ2,5 type (the 5 comes from the alpha chain 0501 that almost always comes with the 0201 beta chain, ; enterolab does not test for alpha chains)

and the gluten sensitive DQ6 gene, which is part of the gltuen sensitive DQ1 gene (DQ1 is the old name and was later split into DQ5 and 6)

And, to add, pancreatitis is not an unusual prensentation of celiac.

Some celiacs get pancreatitis every time they get accidentally glutened while on an otherwise strict gluten free diet.

The antigliadin was high and the cows milk antibody was very high close to positive (we have seen that a lot here)

Yes, ordinary celaic tests will be negative if you were not eating a lot of gluten , and you obviously were not.

Was the Enterolab test also totally off gluten?

I assume your biopsy was from teh small intestine, not the colon....and it will be negative iff off gluten. Doesn't take a long time off gluten either to be negative.

Thanks for your reply :0) I really appreciate your explanation! I hope someday It will make sense, right now I am in this I will believe it when I see it mood.. Dont think I could handle one of those emtional crashes I get when a flare comes... The biopsy was done during a colonospy, off the top of my head I have noidea where they took it from..

I was eating gluten at the time of the entrolab test, today is day 4 gluten free. A total change from vegan, try not to eat FAT diet. HA.. I guess this means I can have choclate again, ha! hopeful thinking. I am very happy to say I have the BEST mom in the world.. She has 2 friends who are gluten-free and she is on her way with a care package and is going to help me clean out the cuboards/pantry today. Stinks that I JUST stocked up too...upon first look, I walked away in frustration as EVERYTHING in my house has gluten of some form...

nora-n Rookie
nora-n
Posted

So good your mom has gluten-free friends!

The gene test and the antibody test from Enterolab, and your history and symptoms mean you should totally stay awasy from gluten.

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