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Woolygimp1207

Antigliadin - Possible Celiac?

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As a child I was always underweight and hyper for the most part, due to ADHD. When I turned 17, I'm a 20 year old male now, that all changed. I gained weight, and became fatigued. It set on slowly, and trying several things I noticed I had a very low body temperature. I was put on thyroid medication despite my tests being normal, and i showed a great improvement. However, the thyroid medication did not completely remedy all of my symptoms.

I went on a gluten free diet a few weeks ago, for about a month. I started showing definite improvements, and I felt better than I have in years. Then I went back on my normal diet, which was still healthy for the most part. Over the course of about a week, I noticed I wasn't feeling as good as I did. So I went back on the gluten free diet, and I'm feeling better... again, however there are a few problems.

I've never shown a lot of intestinal problems, I've got intermittent diarrhea but it's not consistent and it's probably once every two weeks. My GI did a fecal fat test, and it came back negative. Like I said, at the moment I'm not 'overweight' as I'm only about 185. However before the 'weight' gain that I described above, I was about 130. So I gained over 50 lbs., over the course of this ordeal.

My mother's side of the family definitely has not had optimal health. My older sister has a bad case of autoimmune disease, including RA. My aunt says she's allergic to about 6 different kinds of food including shellfish, soy, and legumes. Most of my mother's brothers/sisters were very overweight, where my sister with RA is very, very underweight.

My father's side is the opposite, very skinny and athletic.

So... I've been on the gluten free diet for about a week and a half now, and I'm feeling better. However, after talking to my GI about the possibility of Celiac, he wants me to do a antigliadin test and similar blood tests to check for antibodies.

I'm under the impression that since I've been on the gluten free diet, that even if I have celiac this test will come back negative. A negative test here, by me, may convince my family (who I want to be thoroughly tested) that Celiac isn't involved.

What should I do?

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Let's see....here are some thoughts:

If you want a diagnosis, you need to continue eating gluten. Make sure that the FULL Celiac panel is run, including the newer, more sensitive tTG test. Often doctors do not run the full panel and only run the anti-gliadin tests. Confirm this with your doctor, otherwise, your testing will be delayed if you have to run it again.

The second part of official testing is the biopsy. This is usually done after postive bloodwork. However, some doctors will do it without the positive bloodwork. You can have negative bloodwork and a positive biopsy (rare, but it happens). Having a positive biopsy is the "gold standard" among medical professionals for diagnosing Celiac Disease.

However, there are many people on this board who have both +bloodwork/+biopsy, + bloodwork only/opted not for the biopsy or biopsy was not done correctly, or people who weren't interested in testing and went with their positive dietary response. That is a personal decision that no one can answer but you. Your doctor will push for bloodwork and biopsy, and honestly, that is the easiest way to know that you are a true Celiac! The only problem is, sometimes the biopsy doesn't catch all cases (its a patchy disease, and can easily be missed). So, something to consider is what happens if your tests are negative, but you know you feel better gluten free? Many doctors will say its not Celiac, and dismiss your positive dietary response. Others will say to keep doing it if you feel better. Just remember, you don't need a doctor's permission to do this diet, either way :)

Honestly, I would try and get the official diagnosis if you can. It makes it easier in the long run. But, if tests are negative, and you think gluten is a problem, it is well worth it to try the gluten free diet again for awhile, very strict. You can be non-Celiac gluten sensitive, which won't show up on Celiac tests, but people have similar symptoms.

Also, many doctors tell people you can't be a Celiac if you are not underweight...that people who have gained weight couldn't possibly have Celiac. That is incorrect: a study was just published indicating that many Celiacs are overweight at their diagnosis.

Another point: Celiac symptoms vary from person to person, and even in one person, they can vary from day to day. Overall, you can be completely debilitated by the symptoms, and other people don't have a single symptom. They are referred to as "silent Celiacs"---those who are asymptomatic. Some people have weight loss, others weight gain. Some diarrhea, others constipation. Some have classic GI symptoms, others have "extra" symptoms like neurological problems. So Celiac is not uniform, but it certainly fits us all.

Hope this helps....feel free to ask any questions and we'll try and help ya out!

Laura

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Let's see....here are some thoughts:

If you want a diagnosis, you need to continue eating gluten. Make sure that the FULL Celiac panel is run, including the newer, more sensitive tTG test. Often doctors do not run the full panel and only run the anti-gliadin tests. Confirm this with your doctor, otherwise, your testing will be delayed if you have to run it again.

The second part of official testing is the biopsy. This is usually done after postive bloodwork. However, some doctors will do it without the positive bloodwork. You can have negative bloodwork and a positive biopsy (rare, but it happens). Having a positive biopsy is the "gold standard" among medical professionals for diagnosing Celiac Disease.

However, there are many people on this board who have both +bloodwork/+biopsy, + bloodwork only/opted not for the biopsy or biopsy was not done correctly, or people who weren't interested in testing and went with their positive dietary response. That is a personal decision that no one can answer but you. Your doctor will push for bloodwork and biopsy, and honestly, that is the easiest way to know that you are a true Celiac! The only problem is, sometimes the biopsy doesn't catch all cases (its a patchy disease, and can easily be missed). So, something to consider is what happens if your tests are negative, but you know you feel better gluten free? Many doctors will say its not Celiac, and dismiss your positive dietary response. Others will say to keep doing it if you feel better. Just remember, you don't need a doctor's permission to do this diet, either way :)

Honestly, I would try and get the official diagnosis if you can. It makes it easier in the long run. But, if tests are negative, and you think gluten is a problem, it is well worth it to try the gluten free diet again for awhile, very strict. You can be non-Celiac gluten sensitive, which won't show up on Celiac tests, but people have similar symptoms.

Also, many doctors tell people you can't be a Celiac if you are not underweight...that people who have gained weight couldn't possibly have Celiac. That is incorrect: a study was just published indicating that many Celiacs are overweight at their diagnosis.

Another point: Celiac symptoms vary from person to person, and even in one person, they can vary from day to day. Overall, you can be completely debilitated by the symptoms, and other people don't have a single symptom. They are referred to as "silent Celiacs"---those who are asymptomatic. Some people have weight loss, others weight gain. Some diarrhea, others constipation. Some have classic GI symptoms, others have "extra" symptoms like neurological problems. So Celiac is not uniform, but it certainly fits us all.

Hope this helps....feel free to ask any questions and we'll try and help ya out!

Laura

I'm moving, and taking care of some other important orders of business like school. I cannot start eating gluten again; I was basically just wondering if the blood test is even worth doing if I've been gluten free for a week or two?

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Antibody response does not usually disappear within 2 weeks, especially if the titer is significantly elevated. You still have a chance at seeing an antibody rise. GI's love the tTG best...but it is not 100% accurate either. If you can, get a panel that includes AGA IgA, IgG; anti-endomysial(EMA) and tTG.


Iron deficiency without anemia, unexplained weight loss 2/2003

Positive celiac biopsy 4/2003

Autoimmune thyroiditis 8/2005

Gluten Free Since 2003

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