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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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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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