Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Ttg Iga...is This Sufficient?

hopeful Mom

Recommended Posts

hopeful Mom Newbie
hopeful Mom
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


lizard00 Enthusiast
lizard00
Posted

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 Newbie
hopeful Mom
Posted
  • Author

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 Enthusiast
lizard00
Posted

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 Newbie
hopeful Mom
Posted
  • Author

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 Mentor
ravenwoodglass
Posted
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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    4. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    5. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,083
    • Most Online (within 30 mins)
      7,748
    Juane
    Newest Member
    Juane
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.