Ttg Iga...is This Sufficient?

[hopeful Mom]

Dear Forum,

My 18 year old daughter has had gastro symptoms for a year. We finally requested a test for celiac. The Dr. ordered only the tTG IgA test (not a "panel") and on the basis of that result ("1", with 0-3 being negative) told us that "the results for celiac were negative."

Dr. is OK with us trying a gluten-free diet to see if that helps, but says it's OK to just eliminate the obvious- baked goods, pasta, etc. and not worry about hidden sources.

Questions:

1) Is this test alone sufficient to make that negative diagnosis?

2) Will a diet that includes hidden sources of gluten possibly relieve symptoms, or does one need to cut out ALL gluten to see an improvement?

Thanks for any help you can give.

I don't want the Dr. to think I'm second-guessing her all the time.

[lizard00]

Hi there!

Unfortunately, your doc did not run the entire panel, as you know, and he really should have. It is very hard to actually rule out celiac, and it shouldn't be done on an incomplete blood test. At the minimum, if he was only going to order that test, he should also have ordered a total IgA serum t make sure that she is not IgA deficient.

To answer your other question, with the gluten free diet, it's an all or nothing thing. If you want to try the diet, do it justice and go completely gluten-free for a month or so. Then there will be no doubt as to the results.

I hope you figure out what the culprit is- gluten or otherwise. And welcome to the forum!! I hope we can help

[hopeful Mom]

Thanks for your response, Lizard00! you confirmed my suspicions on both questions. I guess the Dr. just doesn't know a whole lot about celiac.

We'd like to go completely gluten-free for a month...do you have an article or other information to point me towards for a good comprehensive introduction to eating gluten free?

Hi there!

Unfortunately, your doc did not run the entire panel, as you know, and he really should have. It is very hard to actually rule out celiac, and it shouldn't be done on an incomplete blood test. At the minimum, if he was only going to order that test, he should also have ordered a total IgA serum t make sure that she is not IgA deficient.

To answer your other question, with the gluten free diet, it's an all or nothing thing. If you want to try the diet, do it justice and go completely gluten-free for a month or so. Then there will be no doubt as to the results.

I hope you figure out what the culprit is- gluten or otherwise. And welcome to the forum!! I hope we can help

[lizard00]

Here is a safe/unsafe list through this site. This should help you know what to look for.

https://www.celiac.com/categories/Safe-Glut...3B-Ingredients/

The best piece of advice, and what most people are going to tell you, is familiarize yourself with what to look for, and read EVERY label. To start with, the best and easiest is to eat as much fresh and unprocessed as possible. Stay away from a lot of the gluten free replacement, like bread, because it's not all that great, and it can be hard to process in the beginning.

This is what I did when I did my elimination diet: I picked a day, researched what I could and couldn't eat, and planned the first week's food. I knew that it would be difficult at first. It took me about two weeks to actually start after I decided to do it. But, having a clear plan with something like this makes it a lot easier.

And use this forum for it's intended purpose!!! Ask questions, read as much as your head can stand. This forum was and still is an incredible resource for me.

[hopeful Mom]

Lizard00,

THANK YOU!!! for your generous and thoughtful replies. I will do as you say and learn as much as I can. My daughter, being a freshman in college, isn't keen on doing all this studying but has already consulted with the college dietician who will point out OK and not OK dishes in the cafeteria for her.

It's great to know there is help available...especially when the Dr. has proven to be clueless.

Best,

Here is a safe/unsafe list through this site. This should help you know what to look for.

https://www.celiac.com/categories/Safe-Glut...3B-Ingredients/

The best piece of advice, and what most people are going to tell you, is familiarize yourself with what to look for, and read EVERY label. To start with, the best and easiest is to eat as much fresh and unprocessed as possible. Stay away from a lot of the gluten free replacement, like bread, because it's not all that great, and it can be hard to process in the beginning.

This is what I did when I did my elimination diet: I picked a day, researched what I could and couldn't eat, and planned the first week's food. I knew that it would be difficult at first. It took me about two weeks to actually start after I decided to do it. But, having a clear plan with something like this makes it a lot easier.

And use this forum for it's intended purpose!!! Ask questions, read as much as your head can stand. This forum was and still is an incredible resource for me.

[ravenwoodglass]

Lizard00,

THANK YOU!!! for your generous and thoughtful replies. I will do as you say and learn as much as I can. My daughter, being a freshman in college, isn't keen on doing all this studying but has already consulted with the college dietician who will point out OK and not OK dishes in the cafeteria for her.

It's great to know there is help available...especially when the Dr. has proven to be clueless.

Best,

Unless the cafeteria has a really savvy crew who has been educated on celiac and cross contamination she may find it hard to eat at the cafeteria. If she can have a small frig, hot plate, rice cooker and or a microwave in her room that will help. In the beginning it is best to go with whole unprocessed foods, rice, fruits, veggies, fresh unprocessed meats, nuts, beans etc are all going to be naturally gluten free. Do have your DD come here for a visit and to ask any questions she may need to. It can be hard when you are in college to start the diet but it can be done. My DD was already diagnosed and her college put her in senior housing the first year so she could have a kitchette, she hated the dorm though and went into an apartment the next year.

Clueless doctors unfortunately abound when it comes to celiac. It seems they would for the most part rather shove pills at us and see us every week with a new problem rather than finding the root cause and they put much to much weight on blood tests and biopsies that have a rather high rate of false negatives. Many don't understand that although the diet is hard at first it is not bad once we get used to it and at least yours did say to go ahead and give the diet a shot.

I hope things go well for your DD and that she gets quick resolution of her problems but we do sometimes have some ups and downs in the beginning.