Thinking About Putting Son On A Gf Diet...

[Mjohnson73]

Hi all...

I am thinking of putting my son alan who is very little (he weighs 34.5 pounds, is 39 inches tall and is almost 6 years old) on a gluten-free diet, but I am trying to wait until his endocrinologist says.. But I have not gotten a call back from her...*GRRRRR* (don't get me started on that!)....

Should I just go ahead and put him on a gluten-free diet, I am wary about doing it before they do any of the blood tests... and then what happens if his Blood work comes back Negative? I mean mine came back negative but I have had soooo much improvement on the gluten-free diet myself that It is like night and day and I can tell immediately when I have eaten some Gluten... for me, I don't vomit like others on here, but mine goes the other direction (sorry to be slightly graphic)...

so what do you all think I should do???

Should I wait or just go ahead and put him on the gluten-free diet???

Thanks for any advice you can give!

--Maya

[KaitiUSA]

You need to wait until after testing to put him on the diet. Being gluten free before testing will make the tests worthless.

Make sure the complete panel is done on him though.

As soon as the blood is drawn you could have him go on the diet and see if he sees improvement as well.

[Guest taweavmo3]

How long are you going to have to wait? It would be the ideal situation to wait until you can get the blood tests. With that being said, I am having the same dilemma myself. I already have one confirmed 3yo celiac, and a 17 month old who is showing strong symptoms. The ped seems to think that many stools a day are normal, and as long as he is growing some....no need to test. I strongly disagree with this, b/c height seems to be the hardest thing to gain back. I don't want to wait to test until his growth stops, and I flat out refuse to.

Also, my 3yo has what I consider severe developmental delays, as well as some autistic tendencies. We are in the process of getting her evaluated and starting that whole process. My 17 month old talks less now than he did at 15 months. I am scared to death that he will be as delayed as my daughter, and I have no doubt that gluten is to blame. SO, my point being, I am having to really examine WHY I want the actual diagnosis. Is it to just satisfy the doctors, that in fact my concerns are valid, and that I'm not some over-protective granola mom? I know deep down what the problem is.........so I'm asking the ped at Ben's next appt to test for Celiac. He is still young, so the probability that it comes back - is pretty high. BUT, I will put him on the diet no matter what the results. I refuse to feed him the equivalent of poison, just to get that dx. I was iffy at one point, thinking it was a little rough to put him on the diet w/out a diagnosis. But, seeing how long it is taking my 3 year old to "catch up" (if that will every actually happen) has totally opened my eyes.

It is not as if I'm debating a controversial med w/ strong side effects or something......it's a diet change, a simple removal of gluten. I consider it the equivalent of deciding to be a vegetarian or requiring kosher foods. It's a lifestyle, and no on should question why you chose that lifestyle or belief.

I hope that helps....sorry, I'm a little bit venty tonight after a very rough day with the kids, and car trouble that prevented me from going to a follow up GI appt for Emmie that we waited 3 months for. I had to reschedule for.....November! UGHHHHH. I am just so fed up with doctors right now, so your question came at a perfect time! Good luck.

[tarnalberry]

If you ever plan on getting him tested, I agree that you should wait until he's tested to go on the gluten-free diet. If it's been a while since you've been called back, call them again! No need to wait too passively! :-) (Though, once you hear the receptionist *sigh* when you call, you may have called too much. ... At least that's what my personal experience has shown. :-D)

[Kasey'sMom]

Do you have a family Dr. or does you son have a pediatrician? You might try to go another rounte if you can't talk with his endocrinologist. We went through several specialist and practioners before we got my dd's allergist to test her. Kindof funny when our pediatrician called and asked me, "who ordered the tests." We have to travel out of town to see the allergist and I think the ped. was shocked at the results. However, now he is really supportive and we're thankful to have hime on on our side.

Hope you get some answers really soon.

[Mjohnson73]

Hey all,

Well I just got off the phone with my son's endocrinologist...the squeaky wheel finally got the grease and she said that even tho my blood test results for celiac were negative she wants him tested... DUH! So I am calling his Dr. in the morning and getting him tested for Celiac in the morning...I hope I can get him in to the lab in the morning to get tested....

Once those results come in (probably about a week or so)... then she will look at the results of that and the ones of his x-ray (bone age scan) (which apparently she still hasn't looked at....even tho she has had them since Aug. 15th)....

then we can decide what to do.... even if they come back negative, I am still going to put him on gluten-free diet (at least for a while and see what happens)....

--Maya

[Carriefaith]

Good luck with the testing. It was a good idea to wait and put him on the diet after the testing. Ask if they can do the Tissue Transglutamase blood test tTg, since it is highy specific for celiac disease.

[Merika]

If he's being tested in the morning, just put him on a gluten-free diet immediately after the test. No need to wait for the results. The doc may have a fit later if they want to biopsy, but 1- you don't really need the biopsy and 2-if they're fast enough with it, being gluten-free for a week or two won't make a difference for the biopsy.

Merika

[Indea88]

Holding to a strict gluten-free diet for my 2 year old is a no brainer. Now that I know he has Celiac it explains so many things, the behavior, the autistic traits. They are gone now that he is Gluten free.. Hes positive for the gene testing but Celiac Panel was inconclusive( he was only on gluten for three days prior to the test. The Pediatric GI Dr. told me he would have to be on gluten x 4 months and then retested. NO WAY.. Maybe when hes in school all day !!! There is no way I would put him back on Gluten, for what so he can regress?If the gluten-free diet shows improvement I would just do it.