Biopsy Results Help Please (New)

[Mel75]

-small intestinal mucosa with preserved villous architecture and mild intraepithelial lymphocytosis.

-Small bowel biopsy showing preserved villous architecture with moderate numbers of lymphocytes.

- the differntial diagnosis includes potential/latent celiac disease vs nonspecific intraepithelial lymphocytosis.

Ok so my GI doctor made it seem like I have celiac disease but she ran the following blood tests-

1. ANA

2. Celiac panel

3. SED rate

4. B12

Those results aren't in yet. I had the endoscopy first which I guess is backwards. So I'm not clear if she's doing blood work to rule out other diseases or to confirm celiac?

I'm confused and was only having an endoscopy done to check out my GERD symptoms. Celiac never even crossed my mind.

Thoughts? Do I go gluten free now that I've had my tests done? I follow up in 6 weeks with my GI doctor and I wasn't told to start the diet yet.

Thank you for your help!!!

[nvsmom]

It sounds like you have what may be early celiac disease.  You have increased lymphocytes but the villi of the intestine have not been destroyed yet.  That would be Marsh stage 1. Celiac is usually diagnosed at stage 2 or 3.  Open Original Shared Link

 

My guess is she checked ANA because celiac disease is an autoimmune disease and can raise ANA, and there are many other co-occurring AI diseases to keep an eye out for.  

 

The celiac panel is to check is your biopsy is caused by celiac disease.  The problem with that is that early celiac disease doesn't always show up in blood tests.  Make sure you had these tests done (especially the DGP):  tTG IgA and Igg, DGP IgA and IgG, EMA IgA, total serum IgA, and maybe the AGA IgA and AGA IgG if the DGP was not done. Do NOT go gluten-free until you are sure all testing is done.

 

Sed rate is looking for inflammation.  B12 is often low in those with AI diseases.

 

You should probably wait to go gluten-free until you are sure all the celiac disease tests were run. Some doctors only run 1 or 2 which isn't always enough.

 

Let us know your results. And welcome to the board.

[Mel75]

Thank you for your reply!

I was told when I woke up from my endoscopy and colonoscopy that I have an moderate amount of inflammation.......I think she called it erosive ulcers? I did test negative for h.pylori.

Would celiac cause the "ulcers"?

[mammaof5]

I have the exact same thing they found moderate lymphocytosis and vili has not been affected ... All my blood work came back normal so doctor says I'm negative for celiac .... I went into the office to see him so I could ask questions and after going over all my symptoms he then told me to try gluten free for 3 weeks and he wanted to see me back ... After reading everything I have found out that doctors are realizing more and more that lymphocytes in small intestine is early sign of celiac but my doctor seems to not know much and was not even going have me come in he was going to just leave it at that ( positive biopsy negative blood test) and I don't agree with that .. Something is causing our intestines to be damaged and they have ruled out bacteria and such so I have went gluten free I'm on day 6 but I also want answers do I have it and it's just not showing in my blood yet or don't I cuz I have 5 kids and if I have I need to have them checked right?!

[Mel75]

I'm not going gluten free at this point. If I was feeling awful I totally would. Besides fatigue and an occasional upset stomach I'm managing. I want to get another opinion before I torture myself ;-)

The only reason I had an endoscopy and colonoscopy is my Dad died from stomach cancer two years ago. When I started having symptoms red flags went off. I've always had a very sensitive stomach but I just assumed it was normal.

I have 4 children and understand your concern.

[mammaof5]

My condolences for your dad ... Yes I also want to get another opinion my doctor told me to go gluten free for 3 weeks ( which I have read it takes longer then that to feel good again) I just do t understand this hole celiac thing the blood work is not always correct yet when something is found in the small intestines they only go off of the blood work so when it's negative then what does a positive biopsy mean so confused Mel75 keeps us posted if you get a second opinion!

[nvsmom]

Sorry about your dad.  

 

Your doctor is taking the approach of "lets see if we can make you sick enough to diagnose."  Sadly, this disease requires getting sicker for a firm diagnosis.    Hopefully that will change one day.

 

After your doctor sees you again in a few weeks, consider going gluten-free for 6 months and then seeing if you can retest everything (biopsy and blood) to look for changes and improvements.  Your biopsy is "subclinical" now, but if it improves after going gluten-free, then that's telling you something there.  Perhaps discuss the idea with the doctor.

 

Best wishes.