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

How Many Kids Tested Positive At Around 2yrs Old?

Electra

Recommended Posts

Electra Enthusiast
Electra
Posted

I'm just wondering because my daughters pediatric GI swears up and down that the endoscopy is just as reliable in a 2 yr. old then in any other age? All the literature says otherwise!! How many of you have children who tested negative with a biopsy or blood tests at the age of 3 or younger and then later found out your child did indeed have Celiac? Thanks so much everyone!!

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

Celiac.com Sponsor (A8-M):


gfp Enthusiast
gfp
Posted
I'm just wondering because my daughters pediatric GI swears up and down that the endoscopy is just as reliable in a 2 yr. old then in any other age? All the literature says otherwise!! How many of you have children who tested negative with a biopsy or blood tests at the age of 3 or younger and then later found out your child did indeed have Celiac? Thanks so much everyone!!

very good idea :D

ptkds Community Regular
ptkds
Posted

My dd tested positive through bloodwork only (we didnt do the biopsy) when she was only 15 months old. I think she had it from birth because I had it when I was pg with her. She is now 20 months old and is doing great on the gluten-free diet!

ptkds

dahams04 Apprentice
dahams04
Posted

My son had the biopsy first just before his 3rd B-day. It turned out positive, showing a lot of blunting, but all the bloodwork following was normal. ...That is why I don't trust bloodwork at all. Hope this helps.

Electra Enthusiast
Electra
Posted
  • Author
My son had the biopsy first just before his 3rd B-day. It turned out positive, showing a lot of blunting, but all the bloodwork following was normal. ...That is why I don't trust bloodwork at all. Hope this helps.

Wow that does help. My daughters bloodwork came back normal, but I'm positive she has Celiac. She has all the classic signs and then some. I'm just hoping (if she indeed has it) that it's confirmed on the day of the biopsy!!

jayhawkmom Enthusiast
jayhawkmom
Posted

Our pediatrician, allergist, and GI all agree that the testing in ANY form on a child under two is very unreliable.

That being said, my oldest child tested negative at 2 & 4 - and just had positive blood tests (tTg, IgA, & IgG) at 8.5.

They obviously didn't detect it two previous times. He did not have a scope or biopsies either time previous, since the tests results were *so* negative that they had no basis to further explore.

My 5 year old had questionable blood (her tTg and IgAAB's were as high as they could be in the reference range, her IgG ab's were more than 7 times the reference range high). And her biospy showed no visible villi damage. However, she had duodenal ulcers, inflammation, and patchiness. Once put on the gluten-free diet... she grew 3 inches and gained 5 lbs within 5 months, after not having gained weight or grown in height in almost 3 years.

Juliet Newbie
Juliet
Posted

My son was two years and 1 1/2 months when the bloodwork came back as possibly having Celiac and the biopsy then confirmed it.

I do not argue that the testing is normally unreliable, but our son was so sick at the time that we honestly thought he wasn't going to make it. He went from having minimal symptoms that could easily be written off to other things (which our pediatrician did do, even when he was getting extremely sick) to being hospitallized for having fluid around his heart and in his abdomen, as well as liver damage, in about a month and a half. So the blood test and biopsy actually worked because, I believe, his symptoms were so severe.

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

Celiac.com Sponsor (A8-M):


rez Apprentice
rez
Posted

Wow. This is a great link and a very powerful story. I hope everyone reads these stories when they are debating to have the blood test. It just shows that complications, major ones, can arise. I feel it is so important to TRY, and notice I said try, to get an accurate diagnosis. My son's blood was positive and now we're going for a biopsy.

gfp Enthusiast
gfp
Posted
Wow. This is a great link and a very powerful story. I hope everyone reads these stories when they are debating to have the blood test. It just shows that complications, major ones, can arise. I feel it is so important to TRY, and notice I said try, to get an accurate diagnosis. My son's blood was positive and now we're going for a biopsy.

Much as it makes a lot of sense to get the diagnosis I think its worth considering the other side too.

The problem is it all depends on circumstance.

Poor Juliet was in one set but that might not be the same for everyone....

For me the main thing to consider is if your child's specialist actually beleives the tests are not reliable in infants.

If they refuse to consider the test may be a false negative then you are risking being stuck with a "diagnosis" of anything BUT celiac disease. If they continue to be ill regardless or respond to a gluten-free diet then you are potentially stuck with a "certificate" saying that is the one thing they don't have. This is going to make getting them to do testing (and insurance to pay) at a later age when the tests are more reliable more difficult. Of course you can also argue that by dismissing celiac they might find and treat something else so its really something IMHO that has to be considered case by case.

Electra's purpose of this thread is as I understand to gather as much info as possible.... hopefully she will be able to make that decision then herself.

As such it would help I think if we all tried to just give facts without saying testing should/should not be done..(although noone has done this yet).. I'm sure this is an emotive subject and I'm sure there are good and bad stories in both directions but perhaps we can help Electra (and probably lots of mothers as well) by just compiling the facts?

I'm thinking if this is kept reasonably civilised without any "attacks" on MD's etc. she can print it out as is :D much as I realise lots of members have probably got terrible horror stories.

wendyw Newbie
wendyw
Posted

My son tested negative for celiac at 9 months. He's now 12 months old and we've been wheat/gluten free for nearly 8 months or longer. However, he also reacts badly to dairy, soy, corn, egg, citrus, tomato, tree nuts, peanuts, strawberry, chocolate... He's exclusively breastfed, so it's through my diet that I measure the changes in his behavior, spitup, excema and stool/rashes. I feel pretty certain the test is worthless at this age as are allergy tests judging from our homework here. ;)

Granny Garbonzo Apprentice
Granny Garbonzo
Posted

The doctor my daughter used for both my grand kids doesn't take any chances. He tells her to keep them away from gluten and then when they are at least one year old you can try it if you want, but he says it doesn't hurt anything to just keep them off it anyway. Now my oldest grandaughter is 5 and youngest is 2. No tests have ever had to be run because we just didn't give them gluten then tried it and they got sick. We SEE the results of their eating gluten. I don't really understand why people feel they have to have some test that proves they have celiac disease. If the gluten might be making you or your child sick, then just stay away from it for a long time and you will know if you feel better. Simple.

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 rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748
    Tony White
    Newest Member
    Tony White
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.