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Advice For My 2 Year Old Son...
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Hello! My son is turning 2 in april. Ever since he was a baby he has had severe mucousy stools. At about 15 months dr finally agreed to do restriction diet and we found improvement with eliminating milk and soy. His stools did not go solid, but had SOME consistency. After complaining again to his dr she sent us to a gi because he has not gained any weight in 9 months. He has develoental and speech delays also. The gi agreed something is amiss besides toddlers diarrhea and tested for celiac, fats and sugars in stool and did a blood work up. His serum iga was in range at 53 and his ttg and tga were 3 with a range of 0-19. All his stool tests came back negative so it appears he is absorbing fats and sugars and his only deficiency is a tiny low on iron. His bun and creatinine are low which shows low muscle which we knew lol. I have not fully discussed what to do next with gi but I really thought he would be positive for celiacs with his symptoms! Has anyone had a similar experience and done biopsy anyways? I am going to do more allergy testing but I fear it will be a waste since he never has skin reactions, only gi issues. I am getting so discouraged. My lil guy is miserable...

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It is very possible that he has NCGI (non-celiac gluten intolerance), which has no test outside of the elimination of gluten from diet.

 

I have also heard that young children are quite difficult to test for it.

 

Allergies don't always turn up on the skin. My tomato allergy for example causes me to have a harsh sunburn like feeling on my head, face, neck and shoulders. I did the skin prick test and it was one of the largest hives the allergist had ever seen. Safe to say, he agreed i was allergic.

 

I've also heard that they can occur in different forms as well.

 

You could also do the genetic test, as celiac is genetic. It may not get a diagnosis, but it will give you some sort of idea of whether or not he has the potential to develop it or not.

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Welcome!

 

With his symptoms I would insist on a full celiac antibody panel:

 

tTG IgA and IgG

EMA IgA

DGP IgA and IgG

 

You have already had Total Serum IgA -- what was the range for the test you quoted?

 

Also...more nutrient testing besides iron:

 

B1, B2, B6, B12, D, K, Ferritin, Zinc, Copper

 

Once all the blood is drawn -- I strongly suggest removing ALL gluten for at least three months...many children test sero-negative for Celiac Disease.  My own grands had all negative...yet removing gluten improved or removed all their symptoms.

 

Hang in there and ask any questions :)

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Thank you! The iga was pretty in the middle... not sure exact numbers. The past few days for some reason has been horrible. His stools are back to pure mucus, and he will barely eat which is weird for him! All he wants is milk... well rice milk. I am calling allergist today...

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Oh goodness....I hope he is feeling better very soon.

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My boys all tested negative for celiac disease but because I am a celiac, and I suspected issues in a couple of them, I made them gluten-free as well.  I was right to do so. Two of my kids health had obvious improvements.  :) We didn't do the biopsy since it would not have changed the fact that they were going gluten-free.

 

I agree with Lisa (she gives great advice) and try the gluten-free diet when his testing is done. Hopefully he'll feel well soon.

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have you noticed a change in your child's speech delay since going gluten free? We are in that process right now as well with our 2 year old (25 mos).   Went gluten free and cow dairy free 10 days ago due to horrible constipation (and I was so tired of giving her miralax every day for over a year), and no improvement whatsoever on her speech.    I have seen huge improvement in her constipation, no longer having issues almost immediately and no miralax, but no changed in speech quite yet.   I am trying to be patient there.    So, we don't know if it is the gluten or the dairy, or both... but that's where we are today.   Any advice from anyone?

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have you noticed a change in your child's speech delay since going gluten free? We are in that process right now as well with our 2 year old (25 mos).   Went gluten free and cow dairy free 10 days ago due to horrible constipation (and I was so tired of giving her miralax every day for over a year), and no improvement whatsoever on her speech.    I have seen huge improvement in her constipation, no longer having issues almost immediately and no miralax, but no changed in speech quite yet.   I am trying to be patient there.    So, we don't know if it is the gluten or the dairy, or both... but that's where we are today.   Any advice from anyone?

 

 

You asked that question in your own, current thread here:

 

http://www.celiac.com/gluten-free/topic/110684-food-allergies-and-speech-delay-in-toddlers/

 

Might be better to discuss your issues on your own new thread?

 

The original poster has not been on the forum for almost 2 years.

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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Going gluten free may be beneficial if you're among the roughly 10 percent of people who suffer from celiac disease, a genetic immune disorder, ... View the full article
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