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. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
    2. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
    3. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    4. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    5. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,864
    • Most Online (within 30 mins)
      7,748
    Jojo3
    Newest Member
    Jojo3
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • 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.