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

Waiting For Results

AandGsmomma

Recommended Posts

AandGsmomma Apprentice
AandGsmomma
Posted

I had my 5 year old tested yesterday and now Im just waiting for results. Im more afraid of a false negative than a positive. I just hope what ever the result that its accurate. I dont want to find out in a year or five that she was celiac and I have been damaging her.

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

Celiac.com Sponsor (A8-M):


GottaSki Mentor
GottaSki
Posted

This is why many of us suggest giving the strict removal of gluten a good three month trial after testing is complete.

I hope you receive clear testing results, but if not removing all gluten to monitor symptoms is the best next step to make sure your test results were accurate.

Children generally improve very quickly when gluten is the cause of their symptoms - whether it be Celiac Disease or Non-Celiac Gluten Intolerance.

Cara in Boston Enthusiast
Cara in Boston
Posted

Yes, I agree. Once testing is done, regardless of the results, try the diet (strict - don't cheat just because it is only a test) and see if the original symptoms resolve. Also, double check to make sure you got the complete panel done . . . sometimes a test is negative, but if you didn't get them all, there will always be a question.

Good luck. Waiting and not knowing is hard.

Cara

AandGsmomma Apprentice
AandGsmomma
Posted
  • Author

The dr office called and said it was negative but she didnt give me the numbers so Im going to go in and get a print out of the results.

megsybeth Enthusiast
megsybeth
Posted

AandGsmomma, what does your instinct say? I know that's not scientific but, not to be too snarky, a lot of doctors these days aren't too scientific either :huh: . I just say this because starting this summer I KNEW my son had (has) celiac and shortly thereafter I KNEW I had it too. I was right on both. But the first blood test on my son came back "negative" as well. My blood work came back strongly positive and his second round of blood work, with DGP, came back positive enough for me, combined with his genes and symptoms.

I don't know what your daughter's specific issues are but for me the big test of whether to go with the doctor is, if not celiac, what else? I've had celiac for thirty years and just been told it's nothing. But I wasn't ready to accept that my son going from 90th percentile to 5th percentile in height, having constant fatigue and early stages of anemia, weak and stained teeth and now constant diarrhea, is normal and "nothing". So I kept going with his GI who still believes he does not have it and just needs antacids (????) but got an appointment in to see a celiac specialist at the end of the month. He's off gluten and I believe he has celiac. Let's hope both our little ones get better soon.

AandGsmomma Apprentice
AandGsmomma
Posted
  • Author

Megsybeth, its interesting that you ask what my instinct says. I have felt like something was off with her for a while. Her growth is fine for now, but she has awful constipation. When she does go, its tan and sorry to be gross, but HUGE! She is very pail and has dark circles under her eyes. She complains of leg pain. The biggest issue is the sudden behavior change. She has always been a bit anxious but latley her anxiety has been a big problem as well as huge off the charts tantrums over nothing.

AandGsmomma Apprentice
AandGsmomma
Posted
  • Author

I also have come up negative on blood /endoscope but have esiohigitis and issues with vitamin deficiancy along with family history of celiac.

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

Celiac.com Sponsor (A8-M):


megsybeth Enthusiast
megsybeth
Posted

I would definitely report back here with her numbers because there are people on the board who know the tests in and out and can link you to research. Also, maybe look at Peter Green's book? Since you both have gluten issues, I'd take both of you gluten free and see what happens, after the testing of course. You can search this site for celiac knowledgeable doctors and post to ask for recommendations in your area.

My son only had positive DGP IGA so his old GI still does not consider him to have celiac. Pathologist said biopsies were negative for celiac. But I have it, he has it. I would like the specialist I'm seeing in two weeks to confirm it but to me going gluten free is really nothing compared to watching your child suffer and not having anything to do.

Good luck! And check out the cookbook "Gloriously Gluten Free". So delicious I recommend it to non-celiac friends.

Cara in Boston Enthusiast
Cara in Boston
Posted

behavior change was our only symptom in my then 5 year old. First doctor did tests and said NOT celiac. By then, I had tested positive and just knew he was so we kept looking. Took him to a specialist who did endoscopy and found extensive damage. Trust your instincts.

Original "know-it-all" doctor said he didn't have it because he was not positive on the TTG IgA or the Gliadin IgA. He was positive on all the IgG tests, but that didn't seem to interest the doctor. His gene test also indicated a "low" probability. That, and the lack of "classic" symptoms led him to to the conclusion that he didn't have it. He was also very bossy and condescending, so we were happy to go elsewhere.

frieze Community Regular
frieze
Posted

behavior change was our only symptom in my then 5 year old. First doctor did tests and said NOT celiac. By then, I had tested positive and just knew he was so we kept looking. Took him to a specialist who did endoscopy and found extensive damage. Trust your instincts.

Original "know-it-all" doctor said he didn't have it because he was not positive on the TTG IgA or the Gliadin IgA. He was positive on all the IgG tests, but that didn't seem to interest the doctor. His gene test also indicated a "low" probability. That, and the lack of "classic" symptoms led him to to the conclusion that he didn't have it. He was also very bossy and condescending, so we were happy to go elsewhere.

cara, please make sure this doc's name is known in your local celiac community....

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. knitty kitty
      - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment. The cow's body builds that Casein protein. It doesn't come from wheat. Casein can trigger the same reaction as being exposed to gluten in some people. This is not a dairy allergy (IGE mediated response). It is not lactose intolerance...
    2. trents
      - trents replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the...
    3. Scott Adams
      - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
    4. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof

      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go! I'm certain you'll feel much better. Yes, supplementation is a good idea even if you're healing and gluten free. The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities...
    5. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof

      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get cal...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,362
    • Most Online (within 30 mins)
      7,748
    DPC
    Newest Member
    DPC
    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

    • knitty kitty
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go!  I'm certain you'll feel much better.   Yes, supplementation is a good idea even if you're healing and gluten free.  The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities and food preferences can limit choices.  I can't consume fish and shellfish due to the sulfa hypersensitivity and iodine content, and dairy is out as well.  I react to casein, the protein in dairy, as well as the iodine in dairy.  My Dermatitis Herpetiformis is aggravated by iodine.   Blood tests for B vitamin levels are notoriously inaccurate.  You can have deficiency symptoms before blood levels change to show a deficiency.  I had subclinical vitamin deficiencies for years which affected my health, leading to a slow downward spiral.  Because the B vitamins are water soluble, they are easily excreted in urine if not needed.  It's better to have it and not need it than need it and not have it.   Wheat and other gluten containing grain products have vitamins and minerals added to them to replace those nutrients lost in processing.  Manufacturers add cheap vitamins that our bodies don't absorb or utilize well.  Even normal people can suffer from vitamin deficiencies.  The rise in obesity can be caused by High Calorie Malnutrition, where people eat more carbohydrate calories but don't get sufficient thiamine and B vitamins to turn the calories into energy.  The calories are stored as fat in an effort to ration out diminishing thiamine  stores.    It's time to buy your own vitamins in forms like Benfotiamine that our bodies can use well.   Not sleeping well and fatigue are symptoms of Thiamine deficiency.   I'm certain Benfotiamine with a B Complex will help you immensely.  Just don't take them at night since B vitamins provide lots of energy, you can become too energetic to sleep.  Better to take them earlier in your day.   Do keep me posted on your progress!
    • NanceK
      My only proof

      By NanceK · Posted

      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
×
×
  • 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.