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3 Year Old With Unusual Symptoms
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4 posts in this topic

Hi there,

 

I have just been offered a celiac test by my gp for my 3 year old but I'm sceptical she that she is suffering from this as she seems to not have the main symptoms - anyway here goes...

 

Since infancy she has had trouble pooping - more recently up to a week or longer without going and extreme pain when she does - sometimes taking another week to get it out (crying and lying on the couch for a week) She has a raised bumpy rash on her upper arms and cheeks but it is not too visible as it has only a little redness - it is not sore or itchy at all for her. She has been moody and cries a lot which is not her normal character. She has started to lose weight but is still withing the 50% percentile (was just above, now a little under). anyway after watching her get worse over the last 12 months I finally put her on a 10 day elimination diet (sugar, eggs, dairy & gluten) not 100% but 99% or enough to see if it was food causing the issue, she had instant improvement and has been the dear wee girl we used to know. She poops every 2nd day now (unformed but not fatty).

I reintroduced everything and only got a reaction from wholegrain bread - within 1 hour she was crying and had an allergy ring on her backside. - Took her to DR to get advice on how to figure out if it was wheat, additives etc and she suggested Celiac. Her cousin has the gene but no one actually has it in the family (although there are a few sensitives)

 

Does this sound like Celiac to anyone - she suggested I let her eat whatever for the next two weeks including gluten every day until we get a blood test - started today and her rash is back and she has been very easily upset  for about 90 minutes after each meal - then fine again

 

part 2 is that I am breastfeeding a 7 month old right now who is showing the same poop every 10 days, gassy symptoms his sister did at that age (although not as bad) - should I go gluten free as well - I have heard of developmental problems occurring and I'd rather not take a wait and see approach.  I doubt very much I would show positive to celiac disease as I have zero tummy trouble although... I do have ADD and endometriosis which I understand is linked.

 

 

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Constipation is a pretty common symptom. It was one of my main symptoms too. My mom has told me that as an infant, I used to have to strain and cry. Changes in mood are a main symptom in childhood celiacs too. I think getting her testing is worth a try, especially after she had a positive reaction to a (mostly) gluten-free diet. I think that shows that she either has celiac disease or Non-Celiac Gluten Intolerance/sensitivity (NCGI). NCGI has no diagnostic blood tests so you would need to try a 100% gluten-free trial and look for positive results... after she is done testing though, keep eating gluten until then.

 

The full celiac panel is:

  • DGP IgA and DGP IgG (great test for detecting celiac disease in young children)
  • tTG IgA and tTG IgG
  • EMA IgA (detects advanced disease and is often negative in children)
  • total serum IgA (a control test)
  • AGA IgA and AGA IgG (older and less frequently used tests)

And as I said before, she could have NCGI if her celiac tests are negative, in which case she will need a strict gluten-free diet in order to feel well.

 

If you suspect problems in your 7 month old, you might want to get her and yourself tested... although I'm not sure if they test that young and if there is enough gluten in her diet for accurate results. Because celiac is genetic, you and their dad should also get tested. You might as well test before going gluten-free, just so you know if celiac disease is an issue for you.

 

Good luck and welcome to the board.  :)

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I can't address the issues with the children, but I can tell you that I had no intestinal symptoms.  I have thyroiditis and iron deficiency anemia (Doc caught it during a routine physical).   There are four kinds of celiac and one of them without symptoms.  I think my source is either University of Chicago or UC San Diego.  You should get checked, if anything, to prevent other problems from developing.  

 

 

Good luck!  

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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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