Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,187
    • Most Online (within 30 mins)
      7,748
    Kris46
    Newest Member
    Kris46
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...