Thoughts On This Statement

[cmc811]

Type 1 lesions, with IEL only, can be seen in IBS and other causes of malabsorption.  If a patient has a Marsh Type 1 lesion in the duodenum and positive TTG antibodies, the diagnosis is either Celiac Disease or Crohn’s Disease.  If anti-endomysial antibodies are present, it is Celiac Disease, and if they are absent, it is Crohn’s Disease.

 

I stumbled across this statement today on Open Original Shared Link and I wanted some thoughts. Obviously that is a very black and white statement and understanding Celiac never seems to be that clear.

 

I'm particularly interested in what Marsh 1 with positive ttg means because that is exactly where I'm at. Unfortunately the EMA was never ordered and I have now been gluten free for 9 days. I haven't had a follow up appt with my GI yet, I just was told that my biopsy wasn't the typical findings of celiac. Her advice was that if I feel better off gluten, I should continue to avoid it. It seemed like she was just leaving it at that because she never mentioned following up at all.

 

So...........if a positive ttg and Marsh 1 doesn't always mean Celiac, then what? Shouldn't she be ruling out other causes? Those 2 findings aren't "normal" and something is causing them. To be honest I know very little about Crohn's disease but it has never been mentioned as a possibility when discussing my symptoms with my PCP or GI.

 

I just wish it really was as black and white as the quoted statement makes it seem...

[LauraTX]

This article, the second column on the first page... gives a good layout of the number grading of lesions.
Open Original Shared Link
 
Whoever gave this statement misspoke in the second sentence.  But the third sentence clarifies.  If antibodies are present, it is celiac.  If not, it is crohn's.
 
It really should read: If a patient has a Marsh Type 1 lesion in the duodenum, the diagnosis is either Celiac Disease or Crohn’s Disease.  If anti-endomysial antibodies are present, it is Celiac Disease, and if they are absent, it is Crohn’s Disease.

 

Maybe we should contact them to let them know of the error.  I am going to email the blogger.

 

Edit to add:  It looks like it was probably her error as she was transcribing events of the day to her blog.  I sent her an email contact.

[jebby]

Hi CMC and Laura,

Laura did email me and I am very grateful that she did, and I am sorry about any confusion.

Dr. Marsh, the founder of the a Marsh grading system for the small intestinal changes seen in celiac disease, gave a talk at the ICDS, and he is the one who I paraphrased in my blog post.

From what Dr. Marsh said during the lecture, if a patient has symptoms, elevated TTG antibodies, and a Marsh 1 lesion, there are 2 possibilities, either Celiac Disease (likely an early stage) or Crohn's Disease. The other causes of a Marsh 1 lesion, such as IBS or lactose intolerance, do not cause the TTG antibodies to be elevated.

To determine if the symptoms, elevated TTG, and Marsh 1 lesion is from Celiac v. Crohn's, the endomysial antibodies should be checked. If the endomysial antibodies are normal, the patient likely has Crohn's, as they should be elevated in Celiac Disease.

Nothing in medicine is ever black and white, but I believe that he was trying to provide a framework/guidelines for medical decision making for some of these gray areas of celiac diagnosis.

Thank you also for reading my post in the first place, as poor Laura learned from my email I am really at a low point with blogging and updating it right now....

Jess

[cmc811]

Hi CMC and Laura,

Laura did email me and I am very grateful that she did, and I am sorry about any confusion.

Dr. Marsh, the founder of the a Marsh grading system for the small intestinal changes seen in celiac disease, gave a talk at the ICDS, and he is the one who I paraphrased in my blog post.

From what Dr. Marsh said during the lecture, if a patient has symptoms, elevated TTG antibodies, and a Marsh 1 lesion, there are 2 possibilities, either Celiac Disease (likely an early stage) or Crohn's Disease. The other causes of a Marsh 1 lesion, such as IBS or lactose intolerance, do not cause the TTG antibodies to be elevated.

To determine if the symptoms, elevated TTG, and Marsh 1 lesion is from Celiac v. Crohn's, the endomysial antibodies should be checked. If the endomysial antibodies are normal, the patient likely has Crohn's, as they should be elevated in Celiac Disease.

Nothing in medicine is ever black and white, but I believe that he was trying to provide a framework/guidelines for medical decision making for some of these gray areas of celiac diagnosis.

Thank you also for reading my post in the first place, as poor Laura learned from my email I am really at a low point with blogging and updating it right now....

Jess

Thank you so much for the clarification!!!

 

It doesn't help my particular situation because EMA was never ordered for me but my GI said it was very likely Celiac and was confident enough to call it that. I guess now I just worry that the diagnosis wasn't right. Is seeing how I feel on the diet the next step? My tTg was just mildly elevated (7 with >4 being positive) and with my biopsy only showing Marsh I it makes me less confident about the diagnosis I guess.

Unrelated but I just got my endoscopy report in the mail and I'm a bit disapointed. Only says "multiple biopsies" but doesn't say how many or if any were taken from the bulb. Just says "duodenum". And the pathology report isn't helpful either. It states "The specimen consists of multiple tan-gray tissue fragment(s) measuring up to 0.5cm. The specimen is entirely submitted between sponges in one cassette."

 

I thought I read somewhere that the tissue taken from each biopsy was supposed to be submitted separately, but of course I can't find that article now so I have no idea the source. Also it just says "increased number of intraepithelial lymphocytes" but there isn't a number. Is that normal?

 

I have been given the diagnosis and I have no problem with being gluten-free but I just want to be confident about it and unfortunately I'm just as unsure now as before my endoscopy