Positive TTG and negative biopsy, what to do now?

[tedementa]

Hi there, hope someone can shed some light. I'm a 29 y/o female and I've been having digestive problems for the last 3 years or so, here ase some symptoms: bloating, weight gain, belly crapms, diarrhea and constipation, nausea, horrible mouth ulcers (tongue, cheeks and palate, at least once a month). It started all of a suden, about a year after I moved countries (I though I was just stressed out). Two years ago I had my gall blader removed due to stones and last year it was my appendix. I'm not sure if all this is related but just so you get the picture, I've been pretty sick, including some gynecological problems I'm still dealing with. Now I'm in treatment for H Pylori infection, which is worsening the symptoms.

Last summer I got a genetic test done and I found out I have one of the markers for celiac disease, so I asked my doctor to run a blood test. It came back positive (got 28, normal result should be less than 20) and she order an endoscopy+biopsy. I just got the results a couple of week ago and it's negative. My doctor doesn't know what to tell me, what should I do? I still have the symptoms but she told me to keep eating gluten just in case we need to retest. I'm lost and don't know what to do. Thanks to all!

Edited January 29, 2019 by tedementa

[docaz]

This is probably one of the most difficult situations to be in because the blood test is just a touch above normal and you do not want to be going gluten-free for life if you do not have to. This means that you do have slightly more antibodies than is considered normal but not much and therefore your body does not create damage to the small intestine that would show up at the biopsy. There are two questions here. 1. Do you have active celiac disease? 2. Are the symptoms related to gluten (celiac or gluten-sensitivity) or one of many other causes? The first question is not easy at all to answer and a follow-up blood test might be helpful (but after continuing to eat gluten). The second question can be answered by going gluten-free for a period of time (but then a follow-up test might not be diagnostic) and then you can see if symptoms disappear not. If you feel better, then it is still a little tricky because it is still not sure if this is celiac or gluten sensitivity and the difference is important in regards to how careful you have to be staying gluten-free. If you do not feel better, you have to keep looking but at least you know that it is not the gluten. One option to consider is to suffer it through for another 3-6 months and then do a follow up blood test but at the same time looking for other causes and if nothing helps, to try a gluten-free diet. 

[cyclinglady]

Were you consuming gluten daily 2 to 4 weeks prior to your endoscopy?  

Did you get copies of the biopsy results?  Your GI should have taken 4 to 8 samples from various locations.  Even then, it can be easy to miss patches of damage as the small intestine wall surface is larger than a tennis court.  

The TTG can be elevated due to other autoimmune issues like Crohn’s.  Was this ruled out firmly?  I have have a family member who was diagnosed with Crohn’s via a pill camera.  Her damage was well beyond the reach of scopes.  

Did your doctor run the entire celiac panel (DGP and EMA)?  That might shed some light.  Those two are more specific to celiac disease.  

https://www.verywellhealth.com/celiac-disease-blood-tests-562694

[tedementa]

Hi, thank you so much for your answers! I have never tried the gluten free diet, at most I reduced the consumption of it at times just for the sake of it. I've never been sure if gluten is to blame for all this symptoms, that's why I asked to be tested just to rule it out. I live in Ontario, where celiac blood panels are not included in the health system so I have to pay each of them. I only did the TTG IgA, but now I'm thinking maybe is worth it to pay for a complete panel to be more precise. I'll ask my doctor, thanks for the advise. 

I was healthy before all this started, now I feel bad to even talk about all this with doctors because they keep brushing me off (you're fine, just do some yoga and keep a healthy diet - they say). Well I'm trying and everything is the same. I just want to know whats wrong, fix it if possible and go on with my life, they don't seem to get it and it's getting frustrating. 

Sorry for the rant and thanks again, all help is highly appreciated!

[GFinDC]

Hi,

It is possible to celiac disease with only one positive type of antibody.  Some people only test positive on IgG or IgA, but they have celiac disease.   So getting the full celiac disease test panel is a good idea.

The doctors might understand the severity of your symptoms better if you recorded them on a calendar and bring that with you.  A daily history of symptoms is hard to ignore when the documentation is staring you in the face.  At least it should be!

There are independent labs where you can get celiac testing.  I think Quest does it but not sure of the test name.  There is also the Biocard test kit you can buy in Canada and I think Europe.  Biocard tests only IgA though.

[docaz]

There is also one called imaware that is being sold for $99. My kids took it because they did not want to go to the doctor. 

[Lily818]

On 1/30/2019 at 7:20 PM, docaz said:

There is also one called imaware that is being sold for $99. My kids took it because they did not want to go to the doctor. 

How do you order it for your kids?