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22 Month Old Diagnosed With Celiac


Ryansmom

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Ryansmom Newbie

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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tarnalberry Community Regular

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!!

Ollie's Mom Apprentice

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?

Nanhosen Newbie

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!

kareng Grand Master

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?  :)

kb27 Apprentice

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.  

Ryansmom Newbie

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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tarnalberry Community Regular

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

JJmom Newbie

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....

NodakMom Newbie

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.

formygirl Rookie

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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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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