Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Does it sound like Celiac or something more sinister

Joanne Slender
 Share

Recommended Posts

Joanne Slender Newbie
Joanne Slender
Posted

About a year ago I was suffering from stomach cramps so was concerned about ovarian issues, however the doctor carried out numerous tests, one being Anti-Endomysial antibody IgA which came back positive and also serum tissue transglutaminaise which was weak positive. Also B12 was low and raised liver enzymes. I then didn’t go through with biopsy and continued to eat gluten. Lately I feel tired bloated and mix between constipated and diarrhoea. I have biopsy scheduled Fri 9th but extremely worried that I left things to long and have caused additional issues as constantly have sore upper left abdomen, any advice greatly appreciated. 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Welcome to the forum, Joanne!

First, the anti-Endomysial antibody IgA is very specific for celiac disease but not considered a sensitive celiac antibody test so if that is positive it just about guarantees you have celiac disease. Then when you add onto that a positive tTG-IGA (the single most common celiac antibody test ordered because it combines good sensitivity with good specificity) together with your classic symptoms, there is no doubt in my mind that you indeed have celiac disease, even though not confirmed by biopsy. B12 is commonly low in celiacs and about 18% of celiacs have elevated liver enzymes. I'm one of those who experienced elevated liver enzymes and is what eventually led to my celiac diagnosis.

May I ask why you did not go forward with the endoscopy/biopsy and continued to consume gluten? Not trying to put you on a guilt trip but sometimes people are in denial and sometimes there are practical reasons like financial constraints. 

May we ask what your age is?

Yes, it is possible that putting off going gluten-free has led to other issues common to unmanaged celiac disease. Some possibilities are GERD, peptic ulcers and SIBO (Small Intestine Bacterial Overgrowth). Another possibility, independent of celiac disease, is Crohn's. You should also be checked for H. Pylori. The good news is that all of these conditions (except Crohn's) can be addressed in part or in whole by seriously committing to a gluten-free diet. Celiac disease damages the villi that line the small bowel which leads to nutrient malabsorption issues and "leaky gut" which in turn can lead to a whole host of spin off medical issues.

Joanne Slender Newbie
Joanne Slender
Posted
  • Author

Thanks for your response…I am 49 years old and think the relief it wasn’t ovarian cancer I didn’t take it seriously and also the symptoms reduced. But I will now be taking it very seriously as can’t even go out for a meal without feeling so uncomfortable and just needing to get home. I addition to the stomach issues I also have a reoccurring rash on my elbows that comes and goes which in showed my doctor a picture and she advised HD, the last occurrence about a month ago was a lot wider spread than before. I am not looking forward to the biopsy but to get a definite diagnosis will mean my 2 daughters will be more informed and will then be able to get tested.

trents Grand Master
trents
Posted

HD? I think you meant DH (Dermatitis Herpetiformis). I hope your doctor explained to you that you needed to be eating regular amounts of gluten until the biopsy is over. Otherwise, it may invalidate the test.

Joanne Slender Newbie
Joanne Slender
Posted
  • Author

Yes sorry DH… I have been eating less as feeling under par but making sure I had at least 2 slices of bread daily so hopefully this will be sufficient. 

trents Grand Master
trents
Posted

Two slices of wheat bread daily should be sufficient. That is the recommendation of the Mayo Clinic.

Rogol72 Collaborator
Rogol72
Posted

Something to consider since it's so important to get the correct diagnosis either way. My DH was misdiagnosed as Eczema initially. The rash came and went and was treated with topical steroid cream. Then it came back with a vengeance and itched like crazy. So I had a skin biopsy which was positive for DH and Coeliac Disease. A subsequent endoscopy and small intestinal biopsy was negative for Coeliac Disease. So it might be worth considering getting a skin biopsy also to ensure you get a definitive diagnosis.

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

Celiac.com Sponsor (A8-M):


Joanne Slender Newbie
Joanne Slender
Posted
  • Author

Thank you Rogol72 - I will see what outcome of biopsy is and if proves negative next time rash flares up will ask for it to be tested.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,280
    • Most Online (within 30 mins)
      7,748
    Celiac and Salty
    Newest Member
    Celiac and Salty
    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

    • numike
      is my cleiac disease gone?

      By numike · Posted

      69yo M I have had skin cancer basal  I use a higher quality Vit D https://www.amazon.com/Biotech-D3-5-5000iu-Capsules-Count/dp/B00NGMJRTE
    • Wheatwacked
      is my cleiac disease gone?

      By Wheatwacked · Posted

      Your high lactulose test, indicating out of control Small Itenstinal Bacterial O,vergrowth is one symptom.  You likely have low vitamin D, another symptom.  Unless you get lots of sun.   Celiac Disease is a disease of malabsorption, often leading to subclinical vitamin deficiencies.  A lot of people have these symptoms just before an acute phase of Celiac Disease.  Each of the symptoms can have multiple causes that are not celiac disease,  but when you start having multiple symptoms,  and each symptom is treated as a separate disease,  you have to think, maybe these are all one cause. celiac disease. There is a misconception that Celiac Disease is  a gastrointestinal disease and symptoms are only gastro related.  Wrong.  It is an autoimmune disease and has many symptoms that usually are disregarded.  I made that mistake until 63 y.o.  It can cause a dermatitis herpetiformis rash,  white spots on the brain.  It caused my alcoholism, arthritis, congested sineses, protein spots on my contacts lenses, swollen prostate, symptoms that are "part of aging". You may be tolerating gluten, the damage will happen. Of curiosity though, your age, sex, are you outside a lot without sunscreen?  
    • trents
      is my cleiac disease gone?

      By trents · Posted

      It would be interesting to see if you were tested again for blood antibodies after abandoning the gluten free diet for several weeks to a few months what the results would be. Don't misunderstand me. I'm not necessarily suggesting you do this but it is an option to think about. I guess I'm saying there is a question in my mind as to whether you actually ever had celiac disease. As I said above, the blood antibody testing can yield false positives. And it is also true that celiac-like symptoms can be produced by other medical conditions.
    • numike
      is my cleiac disease gone?

      By numike · Posted

      Thank you for the reply In the early 2000's I did not have the endoscopy nor the biopsy I do not have those initial records I have only consulted a GI drs in the USA 
    • trents
      is my cleiac disease gone?

      By trents · Posted

      Welcome to the forum, @numike! We sometimes get reports like yours from community members who believe their celiac disease has "gone away." We think there can sometimes be cases of remission but not long term healing and that continued consumption of gluten will eventually result in a relapse. This is the state of our knowledge at this point but there is still a lot we don't know and celiac disease continues to surprise us with new findings on a frequent basis. So, we would not advise you to abandon a strict gluten-free diet. Perhaps you can draw consolation from the fact that at the present time you seem to be able to consume gluten without consequences when in situations where you do not have the option to eat gluten-free. But I would advise you to not generalize your recent experience such that you throw caution to the wind. But I want to go back to what you said about being diagnosed by blood test in the early 2000's. Did you not also have that confirmed with an endoscopy and biopsy of the small bowel lining? Normally, a celiac disease diagnosis is not concluded based on a blood test alone because there can be false positives. What kind of doctor did this testing? Was it done in the U.S. or overseas? In the last few years, it has become common in the U.K. to grant a celiac diagnosis from blood testing alone if the antibody test scores are 10x normal or greater. But that practice has not caught on in the U.S. yet and was not in place internationally in the early 2000's. Do you have a record of the tests that were done, the scores and also the reference ranges for negative vs. positive for the tests?
×
×
  • Create New...