Gluten Challenge -- I Want To Give Up. What's The Point?

[sonflawah]

So my 23 month old is being tested for celiac's with the blood and gene test soon. I am undecided if I will have her scoped if the results come out positive. Honestly, haven't thought that much about it, I figure I'll cross that bridge when we get to it. I've pretty much decided to take her completely off of gluten regardless of the results of the blood test though, as I understand there can be false negatives, especially with young children.

 

She was only gluten-free for about a month before we decided to have her tested. Her symptoms (before going gluten free) were just occasional bloody poop, constant mucus in poop, bloated belly, and undigested food in poop. Now since she has been doing a gluten challenge, she is waking up in the middle of the night crying and acting so irritable and cranky ALL the time. There is also more blood in her poop, even more mucus, and so much undigested food I can tell everything of what she ate from her poop.

 

I can tell she is sensitive to gluten, if she isn't celiac. Since she is going to be gluten free anyway and I don't even know if I'm going to have her scoped, is there really any point to continuing this gluten challenge? She is supposed to eat gluten for 2 1/2 more weeks. I just don't like seeing her like this, and I know gluten free helps her. 

[1desperateladysaved]

As a fellow gluten intolerance sufferer (that couldn't do a challenge), I would see if the doctor will give your child a diagnosis based on your explanation of results of the challenge or at least hurry up further testing.   Keep track of all symptoms to discuss with the doctor. 

 

You could ask extended family members, or perhaps you know, if any have already been diagnosed with celiac.  If they have, you know the genes could be there.  Yet, I have totally positive genetics, with no other family member yet being diagnosed.

 

If you ever conceive of a situation where you or someone else would doubt the intolerance enough to disregard it, you must seriously consider finishing testing. . It is possible (in my opinion based on being a forum reader) that endoscopy would give you the most definitive possible answer.  It is considered here on the forum (and in the medical world) to be the gold standard test for celiac disease.  If you, all your family members who are direct caregivers, and future school officials will be satisfied with  your diagnosis then you can make your daughter gluten free for life.

 

 I believe that other diagnoses besides gluten intolerance are possible.  One can have an intestine telescope on itself, or parasites that could cause bleeding in the GI tract.  I would also work on ruling these and any other possibilities out. 

 

You can gage whether the small intestine is absorbing nutrients well enough by checking the nutrient levels in the blood.  My functional Medicine nurse and I are using this method.  Although, I didn't complete a gluten challenge, there has been much found to support my celiac diagnosis.  My nutrient levels have come up to normal.  My reactions to gluten are dramatic.

 

As a mother I feel for your child with all of the trouble she is suffering.  I also have hope that you taking care of her will overcome these problems over time!  If it is a gluten intolerance I am happy that you learned so young, and will be able to solve it with diet.  Keep us posted on your story, and I hope you will soon be thriving.

[GFinDC]

Hi sonflawah,

It sounds like she has something more serious than NCGI (non-celiac gluten intolerance).  NCGI deosn't cause gut damage, that we know of anyway.   I agree with Diana, talk to the doctor now and see if they will diagnose based on her reaction so far.  If she recovered when she was gluten-free, and got that much worse being back on gluten, there has to be a reason for it.  Whether a doctor agrees it is celiac or not, it sounds like she isn't going to thrive eating gluten for her whole life.