Diagnosed?

[LLBEAN]

Hello, I am hoping someone can give me some feedback. This past February I had the antigliadin IgG/IgA Ab. The value is 18. According to the lab test anything over 17 is positive. I had the test done after being at my wits end at feeling horrible but not knowing the cause. I am a competitive runner and in December I could not run half a mile without feeling extreme fatigue, I could fall asleep anywhere I was always so tired, my stomach was so bloated that I couldn't button my pants (and I am thin),trouble concentrating, and I was always ravenous (no exaggeration), stomach upset, pain, and diarrhea. The nurse practitioner ordered the test and she said that it came back positive. She said she COULD NOT diagnose me with Celiacs though, only a GI doctor could.

I went to a GI doctor (older man) and he said WITHOUT a biopsy it is inconclusive. He had no interest in family history. The thing is I have been gluten free for about 5 months now and my symptoms have alleviated tremendously. Now I have joint pain, insomnia, and headaches...but nothing that compares to how horrible I was feeling at the beginning of the year. Last, my mother was diagnosed with SLE and died due to complications, always telling me she never felt okay and she always suffered stomach upset (maybe undiagnosed celiacs?), and her father died within 3 months of diagnosis from stomach cancer when he was 32.

My questions are: 1) Is my blood test sufficient for diagnosis? 2)In order to receive appropriate treatment (nutritionist, treatment of symptoms,etc) do I need to do a biopsy? 3) In order to do further tests or biopsy do I need to reintegrate gluten in my diet (very scared of feeling the way I felt!). Anything is appreciated.

[beachbirdie]

Hello, I am hoping someone can give me some feedback. This past February I had the antigliadin IgG/IgA Ab. The value is 18. According to the lab test anything over 17 is positive. I had the test done after being at my wits end at feeling horrible but not knowing the cause. I am a competitive runner and in December I could not run half a mile without feeling extreme fatigue, I could fall asleep anywhere I was always so tired, my stomach was so bloated that I couldn't button my pants (and I am thin),trouble concentrating, and I was always ravenous (no exaggeration), stomach upset, pain, and diarrhea. The nurse practitioner ordered the test and she said that it came back positive. She said she COULD NOT diagnose me with Celiacs though, only a GI doctor could.

I went to a GI doctor (older man) and he said WITHOUT a biopsy it is inconclusive. He had no interest in family history. The thing is I have been gluten free for about 5 months now and my symptoms have alleviated tremendously. Now I have joint pain, insomnia, and headaches...but nothing that compares to how horrible I was feeling at the beginning of the year. Last, my mother was diagnosed with SLE and died due to complications, always telling me she never felt okay and she always suffered stomach upset (maybe undiagnosed celiacs?), and her father died within 3 months of diagnosis from stomach cancer when he was 32.

My questions are: 1) Is my blood test sufficient for diagnosis? 2)In order to receive appropriate treatment (nutritionist, treatment of symptoms,etc) do I need to do a biopsy? 3) In order to do further tests or biopsy do I need to reintegrate gluten in my diet (very scared of feeling the way I felt!). Anything is appreciated.

Does your test result say whether your test is something like "DGP" or "deamidated gliading peptides"? If so, your test is very specific and you could in good conscience call yourself celiac and be done with it. Even if it DOESN'T say that, you could get away with calling yourself celiac though the older versions of the tests are not quite as good as the ones I mentioned.

Yes, you would have to go back on gluten for several months in order to get ready for a test. Even if you get well-glutened, you could still get a negative biopsy. Biopsies are far from perfect,they depend on so many things: skill of doc taking biopsy, skill of pathologist who interprets, number of biopsies they take, whether your damage is severe or whether it is "patchy" and therefore missed in biopsy.

Unless you live in a country that subsidizes gluten free food, you might get by without an "official" diagnosis. And you don't really need a nutritionist. It is a bit of a learning curve, learning to look for "hidden" gluten, but with the wealth of information on this site you would be able to figure it out pretty well on your own. In fact, if you stick with a "whole foods" (lean meats, fresh fruits and vegetables) diet, it's not hard to navigate.

Only you can decide if it's worth the suffering to get a piece of paper. Down side of NOT having diagnosis is, if you end up in the hospital for some reason, they probably won't feed you gluten-free meals without that official diagnosis. If you are college age and in a communal living situation (as in, dormitories) they won't necessarily accommodate your special requests without an "official" diagnosis.

You could look for a doc that would sign off on a diagnosis based on the tests you have, some will.

You could also get the genetic testing (expensive) which would show you the odds of having celiac. The gene testing does not tell you that you HAVE celiac, but tells you what your risk factors are.

You've discovered that gluten-free makes you feel well. Your body is making antibodies against gluten. That pretty much says gluten is your enemy!

Good luck.

[LLBEAN]

Hello,

I appreciate your reply. The lab test says GLIADIN ANTIBODY (IGG)was an 18. They also did GLIADIN ANTIBODY (IGA) and it was greater than 3, with under 17 being a positive reading. It said that it was "AMD" under lab. Is this enough for a diagnosis you think?

I am worried that without an official diagnosis any doctor I visit in the future might bark up the wrong tree when treating me for any Celiac related ailments. One of the major (scary) issues I had, and occasionally still have, is the brain fog. I am in my early 30's but I have gotten lost driving home from school, to the grocery store, etc... I am "suffering" through graduate school. My memory is very poor. My husband can tell me something and I completely forget it in a matter of minutes. From what I understand this can be related to Celiacs. I honestly just want to get a grip on this and if there is ANYTHING that can be done to help improve cognitive functioning..then do it. Frankly I am tired of knowing that I shouldn't feel this way. Thanks for listening.

[frieze]

Hello,

I appreciate your reply. The lab test says GLIADIN ANTIBODY (IGG)was an 18. They also did GLIADIN ANTIBODY (IGA) and it was greater than 3, with under 17 being a positive reading. It said that it was "AMD" under lab. Is this enough for a diagnosis you think?

I am worried that without an official diagnosis any doctor I visit in the future might bark up the wrong tree when treating me for any Celiac related ailments. One of the major (scary) issues I had, and occasionally still have, is the brain fog. I am in my early 30's but I have gotten lost driving home from school, to the grocery store, etc... I am "suffering" through graduate school. My memory is very poor. My husband can tell me something and I completely forget it in a matter of minutes. From what I understand this can be related to Celiacs. I honestly just want to get a grip on this and if there is ANYTHING that can be done to help improve cognitive functioning..then do it. Frankly I am tired of knowing that I shouldn't feel this way. Thanks for listening.

contact the lab that did the testing and ask what the "AMD" means.