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New To Forum & In A Bit Of Shock...questions!

kgoody813

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kgoody813 Newbie
kgoody813
Posted

I'm 36 and at age 19, I was diagnosed simultaneously with two autoimmune disorders - Ulcerative Colitis and a blood-related one called ITP (Idiopathic Thrombocytopenic Purpura). My GI issues have been very well controlled by medications, which over time, have included Prednisone.

About a month ago, I started having reflux symptoms - sore throat, regurgitation, feeling badly after eating acidic foods. I had a regular check up with my GI doctor scheduled anyway, so he put me on Protonix, which did not help much after two weeks. He then suggested an endoscopy to, presumably, diagnose reflux and switch to something like Nexium.

The results of the stomach biopsies they did were thankfully benign, but the nurse just called and said that the biopsies "indicate possible Celiac Disease, and a follow up blood test is necessary." I am reeling as I know that this will be incredibly life changing (but also life saving) if the diagnosis is confirmed.

My question is - has anyone ever had the testing in reverse? Being that the endoscopy was first and then the blood work will confirm? Or are they just breaking it to me gently? - It would seem, from my initial reading, that the biopsy would be the gold standard of confirming the disease. Is there a case out there where Celiac was suspected from endoscopy, but then ruled out with blood work?

I appreciate your input in advance... I have two small children and modifying only my diet is, indeed, going to be life changing for EVERYONE.

Thank you!

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sa1937 Community Regular
sa1937
Posted

From what I've learned, the biopsy would trump the blood test (however, I did have the blood test first and then the biopsy). And a number of people on this forum have had negative blood tests but positive biopsies. And some have been negative for both but still found eating gluten-free solved a lot of other problems for them. And some have just gone gluten-free on their own without either.

While the gluten-free diet is certainly life-changing, it is doable, and who knows...it may solve some of your other issues, too. Wishing you the best.

scouter99 Newbie
scouter99
Posted

Well, my doctor started me with the diet FIRST and feels that if that helps me there is no need to do the rest... so certainly there are a lot of ways to figure this out!

mushroom Proficient
mushroom
Posted

I believe I have read that there are other medical conditions that can cause the same kind of damage to the small intestine as celiac disease, and perhaps he is wanting to rule in celiac and rule out something else.

mommida Enthusiast
mommida
Posted

Did the pathology report include testing for eosinophils?

Did the doctor give you any pictures from the scope?

Skylark Collaborator
Skylark
Posted

I believe I have read that there are other medical conditions that can cause the same kind of damage to the small intestine as celiac disease, and perhaps he is wanting to rule in celiac and rule out something else.

Only Marsh 1, where they see lymphocytic infiltration but normal villous architecture. Marsh 2 or 3 is specific to celiac.

With Marsh 1, blood tests are a good idea, then try the diet.

kgoody813 Newbie
kgoody813
Posted
  • Author

I so appreciate all of your input.

To answer your questions, I do have pictures from the endoscopy and his commentary immediately afterwards that other than mild irritation in the esophagus, due to presumable silent reflux, everything looked normal, including the duodenum. I do not have any other biopsy results. I should've asked more questions when the nurse called me today, but I was half shocked and half in denial ~ I thought, this is so out there for me. I don't have ANY discomfort of any kind whatsoever.

What do Marsh 1, Marsh 2 and Marsh 3 refer to? I get my blood work done at an independent lab in the morning. They faxed the order there, so I'm not sure what's ordered. I do get CBCs w/Diff quite frequently, related to my blood disorder and the eosinophils are normal.

What numbers will be elevated and will confirm Celiac?

Thanks again. Please tell me all you know about the diagnostic process...

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psawyer Proficient
psawyer
Posted

What do Marsh 1, Marsh 2 and Marsh 3 refer to?

The Marsh scale measures the degree of damage to the villi. It ranges from 1 to 4 (well, zero means no damage). Marsh 4 describes total destruction of the villi--that is where I was in July of 2000.

SaraKat Contributor
SaraKat
Posted

I had blood test first (levels were very high) and then endoscopy to confirm.

mommida Enthusiast
mommida
Posted

To be clear eosinophils have nothing to do with Celiac.

lorid888 Newbie
lorid888
Posted

I'm 36 and at age 19, I was diagnosed simultaneously with two autoimmune disorders - Ulcerative Colitis and a blood-related one called ITP (Idiopathic Thrombocytopenic Purpura). My GI issues have been very well controlled by medications, which over time, have included Prednisone.

About a month ago, I started having reflux symptoms - sore throat, regurgitation, feeling badly after eating acidic foods. I had a regular check up with my GI doctor scheduled anyway, so he put me on Protonix, which did not help much after two weeks. He then suggested an endoscopy to, presumably, diagnose reflux and switch to something like Nexium.

The results of the stomach biopsies they did were thankfully benign, but the nurse just called and said that the biopsies "indicate possible Celiac Disease, and a follow up blood test is necessary." I am reeling as I know that this will be incredibly life changing (but also life saving) if the diagnosis is confirmed.

My question is - has anyone ever had the testing in reverse? Being that the endoscopy was first and then the blood work will confirm? Or are they just breaking it to me gently? - It would seem, from my initial reading, that the biopsy would be the gold standard of confirming the disease. Is there a case out there where Celiac was suspected from endoscopy, but then ruled out with blood work?

I appreciate your input in advance... I have two small children and modifying only my diet is, indeed, going to be life changing for EVERYONE.

Thank you!

I just had the same thing happen. I had 3 biopsies that tested positive, but they wanted to do a blood test to confim. It seems to me, the biopsy would be proof positive. Wondering myself...

Skylark Collaborator
Skylark
Posted

I just had the same thing happen. I had 3 biopsies that tested positive, but they wanted to do a blood test to confim. It seems to me, the biopsy would be proof positive. Wondering myself...

Damage on biopsy and a positive response to the diet is plenty of proof. They want to rule out other problems but you are very likely celiac.

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