Does it sound like Celiac or something more sinister

[Joanne Slender]

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. 

[trents]

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]

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]

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]

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]

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

[Rogol72]

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.

[Joanne Slender]

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.