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Trying to find out if my son has celiac


EKhas2017

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EKhas2017 Newbie

Hi I'm trying to get my son diagnosed I'm not sure if it is celiac but wondering if someone could help or offer advice - my son is 2 ever since he was eating solid food he has small spots all over his body no creams have worked - he gets very bloated - he struggles to poo crying and moaning a lot until he does then smells so bad - and also gets bad night terrors every night. 

I went gluten free for him a few months ago and all of his problems pretty much went away straight away skin is still taking time to completely clear. I told the doctor who wants to do a blood test which means eating gluten for 6 weeks then it may not be that. I'm not sure whether to get the test or just carry on as we are?? I don't want to make him gluten free if it's not that especially as the food is so expensive I find. I also have another son who has none of these problems and I just don't know wat to think anymore. 

Thank u 


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Ennis-TX Grand Master

The Blood test would be worth doing, if you get tested and he comes back positive it will not only provide peace of mind, but also help get him on support programs in school where they will help accommodate his food issues as a disability. Also I might suggest having your other son tested. Celiac manifest itself differently in everyone some are silent and will show no outward symptoms.  It is your choice in the end. If you just recently changed over it might bee a good time to do it now.   Also with celiac disease CC can be a issue, changing the entire house over to all gluten free would make life much simpler and safer for your child. There are many options now days and it is much cheaper then it used to be to live a gluten free life, while it is still expensive.

TexasJen Collaborator

I agree with a gluten challenge and labs.  Remember, your son is home now and you control everything he eats. but in a couple of years, he enter the world of birthday parties with pizza and cake. A gluten free diet for celiac is all the time and can be very isolating for everyone - but especially children who don't want to be different. It would be nice to confirm the disease so that you can make sure you have the right treatment plan.

Victoria1234 Experienced

I agree. You will need the diagnosis for a 504 plan in school. And then college. Things seem so simple now, but they are on the brink of being complicated for him.

by the way, we hardly buy anything that is on the aisle for gluten-free, thus saving a ton of money. We make our own food mostly. Basically the things we buy marked gluten-free are pasta and the very occasional baked good. But I've learned to eat mostly Whole Foods and my husband cooks mainly ethnic dishes that are naturally gluten-free. 

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    • 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. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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