Gluten Challenge

[Nic]

My 4 year old son Lucas has not been diagnosed as a Celiac. His brother has. Lucas does have some syptoms that match Celiac but when I had his antibodies tested through the lab my insurance company uses he tested negative. So I looked into Enterolab which my doctor has never heard of but suggested I get his blood tested with Prometheus (they ran my older son's blood). I am apprehensive about using Enterolab because of my doc not knowing them but really don't want to put him through more blood work (he has had a lot of problems since infancy and has had more blood drawn then I have in my entire life). So I figured the easiest way to go is to do a gluten challenge. My question is this: his symptom is constipation (as was his brothers) and I know that does not clear up quickly. How long do you usually do a challenge before you decide it is not working. Obviously if he gets better I will know it is working but I was wondering how long to wait if it is not. Anyone have any experience with this?

Nicole

[Guest nini]

I would try the gluten-free diet for at least 6 months before deciding it isn't working. But that's just me.

[CarlaB]

So, what you're talking about is how long to have him OFF gluten before you can tell it's working? Or, is he already off gluten and you want to challenge it?

If he's already off gluten, it shouldn't take more than a few days for symptoms to start showing up again.

If you're taking him off gluten to see if his symptoms improve, I'd do it for at least a couple months. I know some around here have said that they didn't start feeling better for a longer time than that, but I'd bet that you'd start seeing some changes right away, and others after a couple months.

I was tested by Enterolab. Dr. Fine's research is not yet published, but he has had a good correlation between his tests determining someone is gluten sensitive and them having a positive response to the diet. This is cutting edge research, and basically, those of us using his lab are putting trust in newer methods that are not proven enough to be trusted by doctors across the board. I was very happy with their service, and their results were of no surprise to me. Also, one of my daughters tested positive, the other I had tested did not.

[Nic]

I was very happy with their service, and their results were of no surprise to me. Also, one of my daughters tested positive, the other I had tested did not.

My original plan was to use enterolab but it made me nervous that my doc didn't support it. I guess I worry about a false positive because while it would be no harm done if he ended up eating gluten free for no reason, it would be very hard to take away his favorite foods. He is not like my older son. He is developmentally delayed and while his cognitive skills (letters, numbers, etc) have been on target, his ability to communicate is delayed. I have a hard time explaining things to him and having him accept it. His brother was easier because I was able to explain what the problem was and he accepted it. It will not be as easy this time. Anyway, that is neither here nor there if he is Celiac, but if he is not I don't want to put him through it. I am sure Dr. Fine is "fine" and can be trusted but it makes me uncomfortable to not have the support of a doctor. So we will probably just use prometheus or try removing gluten. I am going to give it some more thought, thanks for the help.

Nicole

[SarahTorg]

My original plan was to use enterolab but it made me nervous that my doc didn't support it. I guess I worry about a false positive because while it would be no harm done if he ended up eating gluten free for no reason, it would be very hard to take away his favorite foods. He is not like my older son. He is developmentally delayed and while his cognitive skills (letters, numbers, etc) have been on target, his ability to communicate is delayed. I have a hard time explaining things to him and having him accept it. His brother was easier because I was able to explain what the problem was and he accepted it. It will not be as easy this time. Anyway, that is neither here nor there if he is Celiac, but if he is not I don't want to put him through it. I am sure Dr. Fine is "fine" and can be trusted but it makes me uncomfortable to not have the support of a doctor. So we will probably just use prometheus or try removing gluten. I am going to give it some more thought, thanks for the help.

Nicole

oooh, Nicole!!! This sounds like my son!

He is now almost 7 years old, and for years he took speech therapy, and I could NOT have a conversation with my son. Therapists said he was autistic. He has a hard time focusing on what people say, or following directions.

He walks around like he is in a fog, or stoned like. He is fascinated with peoples eyes and other strange things.

I cut gluten out of his diet after cutting it out of mine because of a skin rash I had. (dh) My son showed drastic improvement!!! Last week he ate lots of gluten foods after being off of them for a few months. I decided to keep letting him have it to see if it was truly the food, or if it may have been a phase.

on about day four, I couldn't stand my son. LOL He could NOT pay attention to anything. He put his clothes on backwards, and just stared at things like they were magic. LOL His temper would flare easily, and He was constantly thirsty.

So, if my reply here can help you make any decisions, I'll be glad I could share my experiences!

Sarah

[Nic]

oooh, Nicole!!! This sounds like my son!

He is now almost 7 years old, and for years he took speech therapy, and I could NOT have a conversation with my son. Therapists said he was autistic. He has a hard time focusing on what people say, or following directions.

He walks around like he is in a fog, or stoned like. He is fascinated with peoples eyes and other strange things.

I cut gluten out of his diet after cutting it out of mine because of a skin rash I had. (dh) My son showed drastic improvement!!! Last week he ate lots of gluten foods after being off of them for a few months. I decided to keep letting him have it to see if it was truly the food, or if it may have been a phase.

on about day four, I couldn't stand my son. LOL He could NOT pay attention to anything. He put his clothes on backwards, and just stared at things like they were magic. LOL His temper would flare easily, and He was constantly thirsty.

So, if my reply here can help you make any decisions, I'll be glad I could share my experiences!

Sarah

Sarah,

Thanks for the input. My son is always thirsty too. Especially when he was younger. He would drink all the time. As an infant and even now as a 4 year old, I have never seen anyone urinate so heavy. He was tested for diabetes and it was negative. And even though he doesn't seem to comprehend cause and effect, he is brilliant in other areas. We jokingly call him "rain man" because while he has so many delays, he was able to tell you what an octagon was at 2 years old and he didn't start naming colors with green or blue, he went right to all the crazy colors. He can match my near 6 year old academically but can't seem to control his impulses when he wants something. What makes it more difficult is that he is 52 pounds and hard to physically handle (his weight is not due to overeating, he eatsnext to nothing, docs. also tested him for hypothyroid). It has been the never ending battle. Anyway, thanks for the help.

Nicole

[aprilh]

it takes approx 1 year for your gut to heal on a gluten free diet. For me, I don't like to mess around and I don't care if my pediatrician heard of enterolab because he ignored me everytime I talked of my sons poop problem. I took it upon myself, ordered the test, and handed him the results. THEN he took the time to go on the website and learn. He agreed gluten free diet would be best and my son showed positive results within 2-3 weeks. Now, since he was hardly growing, I have him on a Hypo-allergenic protein shake, a L-glutamine amino acid (to heal the gut), and a good quality proibotic. I mix it all in to a protein shake and he loves it! We have one everyday. Now his little face is filling out and gaining weight. I also see a naturopathic dr. They have the same schooling as MD's except their last 2 years they go off to learn about nutrition and other alternative approaches to healthcare. I choose to see both for a rounded out health plan. She is the one that recommended the protein shake.

We also did a urinalysis to see what minerals he might be low in since he pooped so much all his life ( he is 2 years old) It came back with NO detectible levels of iron. So I am supplementing. The pediatrician never once talked about looking into that.