Celiac?

[Michelle1]

Hi there I'm looking for some opinions here. I'm 34 had my first child 2.5 years ago and recently was tested for celiac. I'm now waiting to see a gastroenterologist. My results are as follows:

tTG AB, IgA 18 (normal <4)

Endomysial AB IgA positive

Endomysial AB titer 1:20 (negative 1:5)

IgA serum 185 (range 81-463)

Since I was a child I've had constipation and as an adult go from constipation to diarrhea. Mild anemia, hypothyroid, low vitamin D. I've also been extremely overweight my whole life and though I've been able to lose some weight off and on, since having my baby girl I've tried EVERYTHING and can't seem to lose more than 6 pounds. My mom suggested I get tested when I was complaining of a skin rash around my neck that I got from being in the sun (last year it happened also and was told by a PA that it was a sun allergy that I never had before and it's so extremely itchy and looks like a cross of hives and ringworm. When I asked her to test me she said no you don't have that but then I convinced a doctor friend to order the test.).

Anyway, it looks like I may have celiac? So I went gluten free for two days before the gastro office said not to change my eating until the appointment there so went back to eating it. In those two days I felt pretty good, my aches and pains were lessening I lost 4 pounds etc...so I'm wondering if I even need to go through the gastro appointment? Is a biopsy necessary to really confirm the diagnosis? Are my lab results possibly borderline or "mild"? I'm asking because I've read about people being positive but having fine biopsies and am just curious and also looking to educate myself more on the topic.

I've also scheduled my daughter an appointment with her doctor as she is constipated a lot but she also doesn't like veggies and few fruits, and she is really slim. Her Dr has always attributed it to her being 1/2 Indian and my husband is so slim also but I wonder as she doesn't register on the growth chart but otherwise acts perfectly healthy.

Any advice or insight would be greatly appreciated...

Slightly confused Michelle

[cyclinglady]

I would get the biopsy. It will help confirm a diagnosis and create a reference point for future testing. I was just barely positive on my blood test, but had moderate to severe damage. An endoscopy can detect other issues like an ulcer, etc. Plus, it may convince others in your family to get tested.. Not all celiacs have GI issues. I did not!

I know you felt better in just two days, but it is hard to stay on the wagon if you ever have any doubts about your diagnosis.

Keep eating gluten until you complete all testing.

Welcome and keep us posted. Have some fresh sourdough bread for me!

[NoGlutenCooties]

Hi Michelle and Welcome!

 

With a ttg iga of 18, it is highly likely you have Celiac.  Get the biopsy to confirm though.  Keep in mind that it is possible to have a negative biopsy result and still have Celiac - the testing isn't perfect.  But they will check for other possible issues, so the test is definitely worth getting.

 

FWIW... my ttg iga was "only" 13, on a scale that considered anything over 11 as positive.  I had no symptoms at all and only got tested because Celiac runs in my family.  My biopsy showed moderate to severe villi damage.

[Michelle1]

Oh wow thanks for the info. My sister and her son are going to get tested also now but my dad who has anemia and diabetes said he'll do the bloodiest only...he's 70 so there's not much that will change his mind I'm afraid. Happy Easter to you all and thank you!

[nvsmom]

If the biopsy will help you stay gluten-free, and take eating gluten-free seriously, and you would like to know how damagaed your intestines are (for possible future reference) then I say get the biopsy done. If you are satisfied with a celiac disease diagnosis based on the tTG IgA and EMA IgA results, then I think you would do fine skipping the biopsy... I'm biased though. I had a positive tTG IgA and EMA IgA and chose to skip further diagnostic procedures because those too tests , combined, are about as sure of a positive celiac diagnosis a blood test can get.  

 

This report has more info on the tests: Open Original Shared Link

 

If you do end up with a negative biopsy (they can miss the damage) please go gluten-free in the end anyways.  With those two positive tests, celiac disease is pretty much a sure thing.

 

Welcome to the boards.  

[Michelle1]

Thanks for the link! I'm going to go gluten free, I feel like yuck since starting to eat it again and don't want to keep eating this way until my appointment but I will. (Though I was only off for 2days I can really tell from that how it makes me feel!)