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Celiac Test Is Neg. - Now What?

Mizyellow

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Mizyellow Rookie
Mizyellow
Posted

So my son's celiac blood test came back neg. They didn't do a genetic test just the panel. The doc said we should do a endoscopy which I think is crazy to do on a 14 month old! No one can figure out why he is not growing and has chronic diahrrea. What to do what to do? Should I assume it is not gluten and try a differnt route or try a gluten free diet? Input please!

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mommida Enthusiast
mommida
Posted

The blood tests aren't as reliable in patients under 24 months. The only way you can really diagnose Celiac at this age is to do the endoscopy with biopsy. (WITH BIOPSIES, make sure you discuss this with your doctor and more than one biopsy is being done even if it is "normal looking" tissue.) It seems extreme as a parent to put your child through this, but you need a diagnoses to help get your child healthy again.

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

The endoscopy isn't too terrible. I understand your son is much younger then mine but my son has had two of them and both times were no problem. The bloodtests in children so young are not too reliable (they haven't been eating gluten long enough to build antibodies that would show up on the test) so if you really, really want to know you will have to do the endoscopy. Or, you could do the diet and see if he gets better. Keep in mind though, if you want to do testing when he is a bit older it will not be reliable if he is not eating gluten. Good luck!

GreatGFBaker Newbie
GreatGFBaker
Posted

My daughter was tested for Celiac at 12 mos. (she's 14 mos. now) and her test came up negative. However, she is growing/does not show any signs of IBS, does not have chronic diarrhea. If she did I think I would go ahead with the endoscopy. I know it sounds completely horrible to do but it really isn't as bad as it sounds. I had one for my diagnosis (I don't remember a thing)---but I think I'd want to completely rule out Celiac before beginning tests for other issues.

Good Luck!

Cristina

MaryannG Rookie
MaryannG
Posted

My daughter was 19 months old when we got the upper endscopy done. I think it was worse on me than her! The hardest part was not giving her anything to eat or drink beforehand, but we had the test first thing in the morning. I think it is the best thing you can do for your child, and although it is very scary to put them under anesthesia so young, trust your drs and your child will do just fine. My daughter was her crazy self shortly after getting her home.

fripp017 Apprentice
fripp017
Posted

I was diagnosed with Celiac Disease not too long ago. After I started getting better on the diet, I noticed that my daughter (21 months at the time) and my son (4-years-old) were displaying similar symptoms. They were tested with the blood panel and they showed no "evidence" of Celiac (according to the GI specialist), but they were refered to the specialist based on the results ...? Crazy doctors. Anyway, to get to my point ... both my son and daughter are scheduled to have their endoscopies Tuesday (July 14th). I am going out of my mind worrying if it is the right thing to do. There is so little ANYONE really understands about Celiac and human response to gluten. I just hope I am doing the right thing and that my children do not have a negative response to the anesthesia. My husband and I agreed upon the procedures being done so that we could tell are children why they weren't eating like the other kids, and have a valid medical reason. We felt it would be easier with the diagnosis. I had a teenage girl write back to one of my posts while I was debating on having the procedure done and this was the one post that probably helped me the most:

[Hey there,

I had an endoscopy at 1.5 and I turned out OK

Granted, 18 years ago they didn't have all the fancy blood test, stool test etc. So I'm not really sure what my parents would have done if I was 1.5 and being diagnosed right now. Like everyone else said, its really up to you and your husband as the parents, everyone's family has different needs.

I know from a child's prospective, I am glad my parents got a definite diagnosis while I was young. I hear all the time about how horrible it must be to have never tried pizza or cake or bread, but I feel like those who have experienced all those foods for a long time have a much harder time dealing with getting rid of them. If the endoscopy did give you a definite result of celiac, she would be learning from a young age what foods she can and cannot eat, and like you said, would know that those food would make her sick, not just that you did not want her to eat them. I knew by the time kindergarden rolled around that I needed to double check all foods with an adult that knew about my food problems and could rattle off "I have celiac disease, I can eat wheat, oats, barely or rye" to anyone that would listen to me.

I also know that if I didn't have that definite diagnosis, when middle school and high school rolled around, I probably would have started eating gluten on my own, knowing that I didn't "officially" have celiac. Since that's when kids start eating out with friends and being in more social settings, I struggled just because I don't remember being sick or all of the tests and hospital visits. The disease didn't seem like it was a real problem that I had, because I had never really experienced the effects of it. If that makes sense...

It was the reminder from my parents that this was a real, diagnosed condition as well as the consequences I felt the few times I did cheat that helped me stick to the diet. If I am honest with myself I know I would have rebelled and cheated way more often if I did not know for certain that I had it.

<3 Taylor

Celiac since 1990]

Hope this helps and wish me luck on Tuesday ... :unsure:

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