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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,986
    • Most Online (within 30 mins)
      7,748
    Christine1
    Newest Member
    Christine1
    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

    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Scott Adams · Posted

      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      New Celiac Mama in My 30s

      By Scott Adams · Posted

      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Celiac and dermatitis herpetiformis has taken Me from Me

      By SusanJ · Posted

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • 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.