Is Testing Necessary?

[LittleTee]

I'm currently on a gluten-free diet -- not diagnosed celiac but I have a sensitivity if not full-blown celiac. Years ago I was tested for sensitivity via a naturopathic doctor and it showed I react to gluten. I cut it out for a short time, but began eating it again. Recently, after a stomach flu that left me sick when eating gluten products, I eliminated gluten from my diet for 2 months -- but then accidentally got "glutened" and had a terrible reaction, so there's something there. (looking back I can see other signs, but anyway...)

My son is 4. I have suspected he has an intolerance or celiac as well. I have been tracking his diet and it seems when he eats wheat pasta, toast, bagels, etc., his stomach becomes distended, his BMs are loose and pale (sorry if TMI) and his behavior goes down the tubes. Runny nose out of nowhere, and he gets sick A LOT. More than other kids his age. He's growing and has no other delays or anything, other than a tooth enamel problem.

So finally my question: I am wondering if it's necessary to get him tested via our family doctor? Or should I just adopt the gluten-free diet for him as well, given my history?

I ask because I am not too keen to have my son go through invasive tests such as an endoscopy, but I also realize how difficult a gluten-free diet is for kids. I'm not sure what to do. My family doc does not want to test for allergies until he is 6, because I guess they aren't very accurate. And I'm not technically officially diagnosed (not keen to put myself back on gluten, either, to do the testing).

Any advice would be much appreciated! Thanks in advance!

[L Ceezy]

I'm new to this board and everyone else's feelings on testing. But for me personally, I don't care about any test because I feel the effects so dramatically. I could have every test currently in the world tell me I was fine and I still wouldn't be completely gluten-free. It sounds like your sons symptoms are pretty serious for 4 years old. I wouldn't let this go any longer. I mean, not like life or death obviously, but just I know all the dental work I've gone through because of not catching this for a long time.

And it is a huge pain in the butt, esp for parents and children. But if he starts now, he also won't grow such a taste for all the delicious gluteny things of the world and know how much he's missing

I certainly don't see the harm in the diet. Then if you see that he's able to tolerate slight cross-contaminations or not, you can adjust accordingly. But it sounds like you probably need to be really strict about a gluten-free diet for the rest of your life

[Mizzo]

reasons for a diagnosis:

School

If you want to get him on a gluten-free lunch program in school you must have a Dr's note, then file for the lunch program. My DD cannot eat the gluten-free food our school offers (only 2 choices and both tastes terrible) but the staff will microwave her food, giving us a bigger variety for meals because she is diagnosed. The microwave option has made lunch options so much better.

Travel

If you are going out of the country and bring food it is good to have the note for going thru security. Not mandatory but a nice safety net in case they want to take your food away claiming a health threat.

Peace of mind.

Will you, your spouse or family always be wondering if it reallly is Celiac or intolerance

You can easily get the blood test done and take it from there.

[Jennaand2kids]

i noticed issues with both my kids and i told school i wanted to switch them to gluten free and they said not without a dr note! I would get a dr lab sheet to test for Tissue trans glutaminase....when i did positive was >6 and my son was >33!!! he got his dr note!

[Jungle]

I'm not a fan of invasive tests but I can certainly see the point of seeing if you can get a positive blood test for him. More Dr.s are willing to consider a positive blood test plus positive reaction to gluten-free diet as a diagnosis. And if there are other positive family members that just makes it even better (for diagnosis)

[Jennaand2kids]

he told me there is not a blood test for celiacs.... only a biopsy from the small intestine tissue?

[mushroom]

The tissue transglutaminase is a blood test. There are others - EMA, DGP for example. Doctors like to confirm blood results with a biopsy, but they generally screen with a blood test first.

[shadowicewolf]

he told me there is not a blood test for celiacs.... only a biopsy from the small intestine tissue?

There is. And biopsys can end up being false, while still having it

[Jennaand2kids]

ok so my son did have the tissue transglutaminase but he said that only confirms gluten sensitivity.... his levels were high >6 was positive and he was >33

[mushroom]

ok so my son did have the tissue transglutaminase but he said that only confirms gluten sensitivity.... his levels were high >6 was positive and he was >33

Yes, that's why I said the tissue transglutaminas (tTG) was a blood test. Many doctors will give a celiac diagnosis with a positive tTG and a good response to the gluten free diet. Others insist on doing the biopsy for confirmation. Unfortunately, there is a 20% false negative rate on both blood tests and biopsy, so the biopsy could end up being negative, but that would not affect your son's sensitivity to gluten. If he is sensitive to gluten he should not eat it, period. It is up to you whether you want to put him through the biopsy procedure or not. It is possible to have positive blood, negative biopsy, or negative blood, positive biopsy, or both negative or both positive. And still be sensitive to gluten regardless of the results. And he needs to stop eating gluten regardless of what the biopsy says.

I know this must sound confusing to you, and it is not what you wanted to hear. Nonetheless, it is the reality. With your son's tTG being so highly positive he could well have the damage that shows up on biopsy, although the numbers do not necessarily correlate.

[Annaatje]

It's a very personal decision, but I can tell you why we chose to do the testing on my 5-year old.

We wanted a sure diagnosis so that when he gets older and might doubt the necessity we can tell him with certainty that gluten are bad for him.

Also, we are in Canada and here you can get a tax deduction if you have to follow a gluten-free diet for medical reasons. We would be able to handle the added cost right now, but when our son goes to college in the future it might be much harder on his budget and a tax deduction might help him a lot.

So, for us the reasons for testing are mostly long-term. It's a difficult decision to make.. A year before he was diagnosed I actually had a referral and appt. with a pediatric GI, but cancelled it because he seemed to be a bit better and I didn't want him to undergo any invasive tests when it wasn't necessary. After his blood test came back positive for Celiac last March we still didn't like the idea of an endoscopy, but for us the pros outweighed the cons at that point.

[Amber52377]

We opted to have our son tested when he was 15mos old knowing the results most likely wouldn't be accurate b/c of 1) his age & 2) his immunodeficiencies.

We were right, his blood work has tested negative 2x & biopsy 1x. However, he's had a + reaction to both the skin prick test & to a gluten-free diet so according to his immunologist, he at the very least has a sensitivity/intolerance if not outright celiac disease.

So, gluten-free it is. It's much easier to get people to take you seriously when you have a Dr's "blessing" on the whole thing. I know it makes DH's family stop & pay better attention since it's coming from the Dr & not me.