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22 Month Old Diagnosed With Celiac
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I just found out my 22 month old has Celiac disease.  Neither my husband or I have ever thought we were sensitive to Gluten.

 

I am wondering if anyone had their child diagnosed and then found out that they too had the disease?  Or did anyone get tested and they didn't have the disease, but felt better after going gluten free anyway?  I'm debating between going totally gluten free in the house or trying for a mixed kitchen, but the more I read about mixed, the bigger of a pain it sounds.

 

When people went gluten free, did you just throw out everything with gluten in it?  Right now we have a cupboard with gluten free baby snacks for my son, but he still wants some of the things my  husband and I eat.  Today he tried to steal my grilled cheese!  It just seems so wasteful to throw out all that food.

 

I'm already beginning to see a difference in my little boy, and he's only been gluten free for a week.  He eats better, plays more, is more active, and just seems so much more normal.  We have to take him in for an endoscopy on Thursday as one final confirmation of the celiac, but his blood panel came back positive and our pediatric GI doctor said he sounds like a classic case.

 

More than anything, its a relief to have an answer as to what was making my child so sick.  Watching him lose weight and never eat was so hard.  I'm also glad to have found this website where we can join a community of people who are all dealing with these issues.

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I don't make special food for my daughter. She eats what we eat, and since I have to be gluten free, the vast majority of what she eats is gluten free. Then I don't have to worry when she tries to feed me her crackers!!

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Argh, the doc had you put your little guy on a gluten-free diet *before* the endoscopy? for the best chance at a positive biopsy, he would have needed to be on a full gluten diet leading up to testing. Will the doc diagnose based on blood work alone, regardless of biopsy result?

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Argh, the doc had you put your little guy on a gluten-free diet *before* the endoscopy? for the best chance at a positive biopsy, he would have needed to be on a full gluten diet leading up to testing. Will the doc diagnose based on blood work alone, regardless of biopsy result?

No, I must not have been very clear. She had an endoscopy about 2 months ago while she was still eating a full-gluten diet. Now she's scheduled for a colonoscopy to check for ulcerative colitis. She was up every 2 hours last night complaining about her stomach, so I really hope we can find some answers soon!

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No, I must not have been very clear. She had an endoscopy about 2 months ago while she was still eating a full-gluten diet. Now she's scheduled for a colonoscopy to check for ulcerative colitis. She was up every 2 hours last night complaining about her stomach, so I really hope we can find some answers soon!

 

 

I think the response was for the person who started this thread about her little boy?  Maybe you are in the wrong place?  :)

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When my then 8yo was diagnosed with celiac, we made the whole household gluten-free.  It really is easier (says the person who is traveling right now and dealing with a slightly mixed kitchen).  Mentally, it also helped me to really invest the time and energy into figuring out how to make good, tasty, gluten-free food.  I love to bake, and I had to relearn everything with gluten-free flours, but I put the effort into it in part because we were all eating it. 

 

We gave away any unopened gluteny food to a food shelf.  We gave opened food away to friends.  We cleaned the whole kitchen top to bottom.  And we started over with everything gluten-free.  

 

I'm glad your son is doing well!  It is an adjustment but it's worth it.  

 

For your other question, none of the rest of us have noticed any health changes going gluten-free.  We tested everyone and nobody else in the family had high antibody levels.  So at the moment, there were no other diagnoses of celiac. There are definitely people here who discovered they had celiac after their kids were diagnosed, or vice versa.  

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The Pediatric GI did the endoscopy today and showed us the scalloping on this small intestine.  He said he doesn't really even need the biopsy back to tell that he has celiac disease.

 

His appetite has improved so much that I have to imagine this is what kids his age are actually like. 

 

My son was eating so little and was so cranky, that we saw a huge turn around in a week on the gluten-free.  I'm glad the pediatrician had us do that even though we might not get a positive biopsy.  Since most of the visible signs are there, I'm pretty sure that's the diagnosis we'll get.

 

I appreciate all the feedback!

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I'm glad to hear he's feeling better so quickly!!

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You are lucky in that you guys saw significant improvement right away,since that helped to confirm that it was celics and that you guys are on the right track. While reading your post I kept thinking that I wish we would see results (it's been 4+ months on gluten free) and my 2 yr old still has not gained weight or increase her appetite. Her first endoscopy showed minimal blunting, and she just had another one which showed no blunting and a normal gut, but she still is same weight and eating has not changed. Reading your post makes me think that improvement in symptons should have occurred after 4 months so perhaps my 2 yr old doesn't have celiacs....

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I have a 19 month old who was diagnosed at 14 months.  When we first found out, we cleaned out the fridge and cupboards and separated them into "regular" and "gluten free" spaces.  The gluten free shelves are the shelves that are within reach of our child with celiac.  Any refridgerated gluten products are stored up high or in our second fridge in the basement, which is a lot less accessible than the main kitchen fridge. 

 

Our policy is that our main meal at supper time is totally gluten free.  That decreases the risk of cross contamination.  Breakfast for our celiac kid is usually fruit and a gluten free muffin or yogurt.  Lunch during the week is served at daycare, but is usually leftovers from our gluten free supper the night before. 

 

I find that making the main meal gluten free is just easier, because then I have leftovers for his lunch and I know it's not contaminated.

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We still have gluten stuffs in our house, but they are really only for my other dd's lunches.  The dinners I make have been gluten free, which hasn't been that big of an adjustment, really.  

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    • This is EXACTLY what happens to me. It has twice now and both times was after both glutening episodes but once it was the day after and the other time it was a week and a half. So I'm still not sure if it's related or strange bug bites...

      Did they stop happening when she stopped being glutened? Did you decide they were definitely related? I'm really confused by this and would love to know whether to insecticide my house or....
    • 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.  
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