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

At What Age Was Your Child/children Diagnosed Celiac?

salexander421

Recommended Posts

salexander421 Enthusiast
salexander421
Posted

We are undergoing a gluten challenge with our almost 3 year old and our 17 month old. We feel like it's necessary to undergo the testing process although I seem to second guess that decision every day. I've read a lot of posts (mainly on a different board) about celiac typically not showing up with children this young. I've even heard some say it's not common to diagnose under 10, this sounds a little extreme. I guess I just want to know my chances of getting an accurate test result for my girls or if this is all in vain. Thanks!

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

Celiac.com Sponsor (A8-M):


celiac-mommy Collaborator
celiac-mommy
Posted

My daughter was 4 and my son was 2 1/2.

DD had a + blood test and biopsy

DS had a - blood test, suspicious biopsy but positive dietary response

precious831 Contributor
precious831
Posted

My daughter was diagnosed at 2 yrs old. She was negative on the celiac panel but was diagnosed through elimination diet. She had the typical celiac symptoms. The doctor and us were not willing for her to undergo the biopsy especially after he said it might be missed anyway. So we're happy the way it was handled.

After about 1 yr on the gluten-free diet she kind of stopped growing so she went completely grain-free and she started gaining weight again.

CrunchyChristianMama Newbie
CrunchyChristianMama
Posted

My DD is 2 and she started showing symptoms around 12 months old that got increasingly worse around 18-24 months.

divamomma Enthusiast
divamomma
Posted

My daughter is 4 and had a positive blood test.

Lunabell Apprentice
Lunabell
Posted

My daughter was almost 5. The doctor did consider testing her as a baby because she was so tiny. I wish I had listened to him, though aside from reflux, she was otherwise fine. The reflux didn't raise alarm bells for me at the time, since her older sister also had it. Her sister has since tested negative.

seezee Explorer
seezee
Posted

She was 10 and had a positive blood test and biopsy. The doctor did the blood test as a family screening (my nephew has it) and because her weight did not increase from her 9-year check up to her 10-year check up even though she grew several inches. Other than being alarmingly thin and somewhat tired she didn't seem to have many other symptoms. At the time, I was worried she was anorexic because she would ask for food and then just shred it and push it around her plate. Pediatrician was quite concerned at her drop from the growth chart and ordered a ton of tests and the celiac panel was the only positive one. We were referred to see a pediatric GI and ended up going to see three before I found one we both liked. We're in Boston which is probably the one place you can find a dozen or so specialists for anything. Life is so much much better. She is 12 now and doing really well in school (straight A's) and has a lot more energy. I am kind of wondering if she had it for a long time or not. Up until she was diagnosed she had more difficulty at school and was more likely to lose her temper-- but I can't tell if the change is due to the diagnosis/gluten-free diet or that she just got serious in general this year. She also had some absolutely dreadful, mean spirited, cranky teachers in K-5 and in 6th has fantastic ones. My nephew was able to get a diagnosis based only on his positive blood work and response to the diet. There are doctors who will do that for little ones. My sister thinks if he wants to do a gluten challenge he can do so when he's a teen. I think they figured his out when he was about 3.

Personally, it really helped me to get the biopsy, but we were able to schedule it very quickly. For my sister it was equally important that she didn't put her son through that. She took him off gluten immediately with the positive blood test and he got better so quickly that there was no way she was going to make him sick again. He had much more of the classic symptoms like a big belly and skinny arms and legs and his tummy always hurt.

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

Celiac.com Sponsor (A8-M):


ljgs Explorer
ljgs
Posted

My daughter was 13. She had been having on and off stomach pains through 7th grade. Nothing debilitating, but I just felt something might be "off." Boy, was it ever!

curlyq Newbie
curlyq
Posted

My oldest daughter was 6 when diagnosed. My 2nd daughter was 5 1/2 when diagnosed. Both tested positive through blood tests, no endoscopies were done.

sarahbella636 Newbie
sarahbella636
Posted

My son was 22 months when diagnosed via biopsy. His bloodwork (at 19 months and 21 months) also came out positive. His only symptoms were slow weight gain and a lot of stinky diapers each day. Good luck to you!!

salexander421 Enthusiast
salexander421
Posted
  • Author

Thanks everyone for your responses!

kmross Newbie
kmross
Posted

We are new to all of this. My son has been sick for about a year now. He'll turn ten in April. He has had constant Diarrhea, joint pains, limbs going numb for no reason, peeling fingers to the point of bleeding, heart burn, headaches, etc. The list goes on and on. We've had so many tests done and everything has come back negative. His intestines are so swollen and yet no one can figure out why. So on our own we have decided to go gluten free to see if it will help. So far he seems better. Any help and advice you can give is much appreciated

Marlie Apprentice
Marlie
Posted

My daughter was diagnosed at 13. She tested negative on the more widely used tests. Came up positive on both of the new DGP tests. Biopsy was positive. Not sure how long she's had Celiac but she has a history of severe chronic headaches, sinus issues and fractured growth plates. Can't say if that was Celiac or not. However, before her diagnosis she was experiencing stomach pain on a level 9. Doctor's thought she had appendicitis but didn't .

salexander421 Enthusiast
salexander421
Posted
  • Author

My daughter was diagnosed at 13. She tested negative on the more widely used tests. Came up positive on both of the new DGP tests. Biopsy was positive. Not sure how long she's had Celiac but she has a history of severe chronic headaches, sinus issues and fractured growth plates. Can't say if that was Celiac or not. However, before her diagnosis she was experiencing stomach pain on a level 9. Doctor's thought she had appendicitis but didn't .

Which tests are the new DGP tests?? What does that stand for?

Roda Rising Star
Roda
Posted

Youngest son is 6 and went gluten free a month before his birthday. Not yet officially diagnosed but had a positive ttg and allergist say's it is celiac but won't comfirm without a GI confirming it. I elected out of a GI consult and biopsy at this time and put him gluten free since I am blood/biopsy diagnosed.

Oldest son who is almost 10 is not diagnosed and has had repeated negative blood work(has increased a little from past test though). He sees an allergist for IgE allergies (he takes allergy shots) and the allergist feels he is gluten intolerent at the very least. I need to put him gluten free but meeting resistance from him and spouse because of the "negative" blood work.

Dixiebell Contributor
Dixiebell
Posted

Hi salexander421.

Deamidated Gliadin Peptide (DGP) Antibodies, IgA & IgG

srall Contributor
srall
Posted

My daughter is not diagnosed Celiac. She is 7 1/2 and I put her on a gluten/dairy/corn free diet in October. HUGE improvements.

Marlie Apprentice
Marlie
Posted

Which tests are the new DGP tests?? What does that stand for?

Deamidated Gliadin Peptide Tests IgA and IgG. My daughter's tests were done through Prometheus Labs in California. She was negative on the EMA and Ttg Iga tests. Her total IgA level was 67 on the low side of normal range. But the DGP IgA and DGP IgG were both positive. If they hadn't included that test we still wouldn't know that she has Celiac Disease.

4athomej Newbie
4athomej
Posted

My DD is 13 years as well...complained of stomach aches through out 7th grade. She is also very active but had a tendency to ingure herself. Doc couldn't figure out why it was taking so long to heal each time...so blood testing it was and that explains a lot. She goes for scope and biopsy within a couple weeks. We have gone gluten free with her but are finding it difficult.

salexander421 Enthusiast
salexander421
Posted
  • Author

Hi salexander421.

Deamidated Gliadin Peptide (DGP) Antibodies, IgA & IgG

Thank you! So, I'm assuming that's the same as "Deamidated Gliadin Abs, IgA & IgG"??

salexander421 Enthusiast
salexander421
Posted
  • Author

My DD is 13 years as well...complained of stomach aches through out 7th grade. She is also very active but had a tendency to ingure herself. Doc couldn't figure out why it was taking so long to heal each time...so blood testing it was and that explains a lot. She goes for scope and biopsy within a couple weeks. We have gone gluten free with her but are finding it difficult.

How long has she been gluten free? Going gluten free before the scope could cause a false negative since your body begins to heal when gluten free.

cyberprof Enthusiast
cyberprof
Posted

Which tests are the new DGP tests?? What does that stand for?

From celiac.com:"IgA tTG continues to display the most accurate diagnostic tests for a positive celiac diagnosis, as well as for excluding a negative celiac diagnosis. However IgG DGP antibody tests were shown to be more effective at identifying 'false negatives' and had more success in determining celiac in patients that had IgA deficiency, and in children under two years old."

https://www.celiac.com/articles/22043/1/Is-DGP-Serological-Test-the-Wave-of-the-Future-for-Celiac-Disease-Testing/Page1.html

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 Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

      Excessive dietary tyrosine can cause problems. Everything in moderation. Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese. Sulfites cause a high histamine release. High histamine levels are found in migraine. Following a low histamine diet like the low histamine Autoimmune Protocol diet,...
    2. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit.
    3. Scott Adams
      - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."
    4. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes

      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium. Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,151
    • Most Online (within 30 mins)
      7,748
    Travis25
    Newest Member
    Travis25
    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
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Body dysmorphia experience

      By Scott Adams · Posted

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      Heat intolerant... Yikes

      By Scott Adams · Posted

      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.