Need Advice - Positive Aga, Negative Tta

[superfob]

Hi everyone,

I am looking for some advice on what step to take next in regards to a Celiac diagnosis. I have been dealing with many symptoms for over a year now - brain fog, poor sleep, fatigue, muscle weakness, joint pain, random pains in the body including hands and feet and back, tingling and numbness, frequent hypoglycemia, feeling cold, elevated TSH, gas, feeling of fullness after eating a little, undigested food in stool, loose or sticky stools, teeth sensitivity, dry skin etc.

All of the symptoms seem to fit those found in Celiac, so I asked my Dr for a lab test. She sent me a form on LabCorp, but since I used my university health center, they sent my tests to Quest. I did not realize that Quest does not test for IgG antibodies until after my blood was drawn.

IgA Serum: 201 mg/dL, range 81-463

tTG AB, IgA: <3 U/mL

Gliadin AB IGA: 40 U/mL, negative: <11

equivocal: 11-17

positive: >17

Should I pursue another blood test which includes IgG or EMA, or should I just get a biopsy? I do not have severe gastrointestinal pain or frequent diarrhea, but the neurological symptoms are getting to be bad, along with the many signs of inflammation and malabsorption. I also have never gone gluten free, but after reading about Celiac, I have already been eating much less gluten than I did before - I did try to eat more before my last blood test.

Thanks!

[Skylark]

You have normal total IgA so IgG testing would not be useful or appropriate. If I had your results, I think I would ask for anti-EMA IgA, anti-DGP (deamidated gliadin peptide) IgA and IgG, and definitely a biopsy. Not all labs do anti-EMA or anti-DGP so you'll have to see what's available. You do need to keep eating the equivalent of 4 slices of bread a day until all the testing is complete to get accurate results.

You probably do want to try the diet once you're done. With the positive anti-gliadin IgA you are very likely to feel better gluten-free.

[cassP]

because of your symptoms & positive antigliadin- you're OBVIOUSLY gluten intolerant. i would follow Skylark's advice- to get a more complete definitive picture.

imho, all your symptoms SEEM like "classic" Celiac/Gluten Intolerance, with Hypothyroid, and Vitamin B12 deficiency. (just my summation)

good luck

[superfob]

Thanks for the advice. I will go ahead and request further testing and a biopsy. From all I have reading so far, it seems that I am either Celiac or have gluten sensitivity (if my other tests come out negative) - as I do not have severe gastrointestinal symptoms or weight loss but a lot of neurological symptoms. I just had a pastry after attempting to be gluten free for around 4 days, and could notice pressure in my brain followed by a noticeable decline in mental function - it literally feels like my brain is reacting to something significantly.

I have thought about Celiac/gluten for almost a year now - trying to figure out what is wrong with me. At first the symptoms didn't seem to correlate with what I had been reading about Celiac, but now I understand that most people do not present with severe gastrointestinal pain and diarrhea. My symptoms have also worsened to the point that many of them correlate with what I have been reading about the effects of gluten. Looking back, I've had symptoms as throughout my adolescent years which I was not aware of at the time.

Also, I have read on some places that the EMA is rarely used now, replaced by the tTG which is more sensitive - so should I still pursue an EMA test? Also, how long does it typically take to schedule a biopsy? I do not want to be consuming gluten for any longer than I need to.

I also think I may be affected by dairy and eggs - and possibly soy from what other people have said. Should I go ahead and eliminate all these foods along with gluten when I start my new diet?

[mushroom]

The EMA is certainly still used, and more and more doctors as they become aware of it are ordering the newer DGP (deamidated gliadin peptide) which is very specific for celiac. It really depends on the GI doctor how long it takes to get in for an endoscopy - some of them can move you up the list or put you on a cancellation list if you cop a plea, but it can often take several weeks unless you plead your case well.

If you have damaged villi you will not be able to digest lactose for a while until healing has taken place. Soy is a very common co-intolerance with gluten. And there are lots of people who have problems with eggs. You just have to experiment with eliminating these things from your diet, but I would definitely eliminate lactose at least for a good six months (milk, cream, ice cream) and challenge other dairy (cheeses, yogurt, etc.,) to see if you are casein sensitive as well.

[Skylark]

Thanks for the advice. I will go ahead and request further testing and a biopsy. From all I have reading so far, it seems that I am either Celiac or have gluten sensitivity (if my other tests come out negative) - as I do not have severe gastrointestinal symptoms or weight loss but a lot of neurological symptoms. I just had a pastry after attempting to be gluten free for around 4 days, and could notice pressure in my brain followed by a noticeable decline in mental function - it literally feels like my brain is reacting to something significantly.

If you have only neurological symptoms, all the remaining tests may be negative. People with gluten-sensitive neurological problems sometimes have only anti-glidan IgA (if anything). There is no diagnostic test yet for celiac-related neurological autoimmunity other than anti-gliadin. The TTG, EMA, and biopsy are for gut autoantibodies and damage, not the gluten-triggered autoantibodies that attack your brain and nervous system. Count yourself lucky that you got a positive test at all!

I hope the diet helps you once you have the biopsy and all done.

[Happyw5]

I am having tests done right now, so I don't know all my results yet. My Iga came back negative. You sound like you have alot of the same symptoms I have. I have alot of digestive issues, but it's my chronic inflammation and itchy body that is driving me crazy. I started my diet and am already feeling better. I don't think I realized how much it was affecting my brain, I am a waitress, and already have a better memory than a week ago. I am not having a biopsy done, since my tests came back that I am allergic to wheat, I stopped eating it. I am also allergic to soy, and eggs, and peanuts. I can have eggs if they are used as a binder, but I can't eat an egg. I have always had dairy issues, but seem ok with cheese and yogurt. Good Luck with you diet!!!

[superfob]

I just scheduled an appointment with a gastro in SF for February 10th, so three more weeks of eating gluten for me. Hopefully I can get the biopsy that week after. I've been looking online and it seems that the only preparation needed is to continue to eat gluten and avoid certain medications (which I don't take). It's scary each time I eat gluten, knowing that I am further damaging my body, but I am sure I will want the official diagnosis somewhere down the line.

I'm currently wondering if I should try to get on the wait list for a possible earlier appointment. On one hand, I don't want any more dmg (especially neurological), on the other hand, I don't want to get a false negative. I've never gone gluten free for more than a few days, just on and off periods of light gluten. I'm currently leaning towards just waiting the 3 weeks of eating gluten(for long term consideration), but a large part of me definately wants to get seen as soon as possible. What would you guys do?