Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Thoughts On This Statement

cmc811

Recommended Posts

cmc811 Apprentice
cmc811
Posted

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...

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


LauraTX Rising Star
LauraTX
Posted

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 Enthusiast
jebby
Posted

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 Apprentice
cmc811
Posted
  • Author

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 :(

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,668
    • Most Online (within 30 mins)
      7,748
    CDR40
    Newest Member
    CDR40
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.