What Would You Do?

[Pacer]

We have had a quite a learning experience these past few weeks.

to review - DH is celiac, DX'd in 1999 by endoscope. Kids (-) on bloods in about 2002.

About 6 weeks ago, DS6 had a virus with vomiting. Except he just never stopped vomiting. He'd seem better for half a day or so...then more vomiting, and cramps. I brought him to the doctor who said "he's probably just hungry", presumably from all the vomiting.

I bought that for about 2 days and tried to feed him safe (cringe) foods like dry toast and crackers. He was on his knees in the bathroom begging me to make it go away and it finally hit me, what was the one thing we didn't try: going gluten-free. At that point he was so desperate to feel better he would have gone along with anything. Voila! With half a day -- totally normal. Happy, energetic, good appetite.

But of course being 6, he soon forgot his discomfort. At the same time, our doctor advised us to keep giving him gluten. So, we , ummm, gave him gluten again. the cycle repeated. At this point - I am still believing doctors so I'm not taking it totally seriously. DH is the Head Celiac around here so he was in charge of research and he reported to me that there's something new that's better than Endoscopy. I presumed he was getting this info from his GI - but it turns out he was getting his info from celiac.com.

Meanwhile - I keep wondering (hoping!) is it my imagination that DD6 gets better when he's off gluten and regresses when he has it?? As you are all probably aware - it's not like the symptoms are that easy to track. Then DH gets the test results and evidentally our boy is Enterolab's new valedictorian.

So now we are on our 3rd gluten challenge , with a ++ from EnteroLab, and THAT's about the time I find out EnteroLab is considered to be 'controversial'. But meanwhile i don't need any stinkin lab to tell me my kid throws up and writhes in pain on about his 4th day of eating gluten.

So, as of now, we are discussing with doctors...currently DS6 is sticking to his most recent gluten-free diet but I'm sure that's going to wear thin by the weekend. He is too young to understand internal damage, he just knows from pain. A little pizza..no pain. Lots of pizza, lots of pain.

And meanwhile, having read copious amounts here and elsewhere for the last few weeks, I'm realizing it is imperative that we test our totally asymptomatic 8 year old as well. New age, unpublished bunk or no, we are awaiting results from Enterolab if nothing else for comparison.

So, this leads me to the question at hand. Establishing a celiac houeshold is a totally different thing if we're talking about 3 our of 4 family members vs 2 out of 4. Right now there's a lot of "why me?" going on. If DD8 is (+++) it may become much much easier to set up the household. Meanwhile the weekend's coming and DD6 is getting tired of being gluten-free. Do I dare let him have gluten again ? Maybe this time he won't get sick from it (yeah right). How many times do we have to repeat the cycle for me to learn? For him to learn?

How much harder will it be when we finally decide what this household's gluten policy is going to be if we let DD6 go off the diet? If Enterolab was published and accepted of course I wouldn't monkey around with DD6's system. But our GI says Enterolab is meaningless bunk. So I hope you can understand my dilemma.

So anyway. Tha plan now is to take it one day at a time til we at least have word from EnteroLab about DS8. Then we will decide whether we want to believe in Dr Fine or not. Then we will decide how to approach the household. We are vegetarians so that makes being gluten-free all the more unpleasant -- the gluten-free pastas and fake pizzas are vile.

if anyone has any comments, esp about the on-and-off gluten-free thing, in terms of kids, please let me know. Oh and go easy on me if I am seeming like a total noob, OK? Thanks for reading, anyone who's gotten this far. HEIDI

[familyfirst]

We have had a quite a learning experience these past few weeks.

to review - DH is celiac, DX'd in 1999 by endoscope. Kids (-) on bloods in about 2002.

About 6 weeks ago, DS6 had a virus with vomiting. Except he just never stopped vomiting. He'd seem better for half a day or so...then more vomiting, and cramps. I brought him to the doctor who said "he's probably just hungry", presumably from all the vomiting.

I bought that for about 2 days and tried to feed him safe (cringe) foods like dry toast and crackers. He was on his knees in the bathroom begging me to make it go away and it finally hit me, what was the one thing we didn't try: going gluten-free. At that point he was so desperate to feel better he would have gone along with anything. Voila! With half a day -- totally normal. Happy, energetic, good appetite.

But of course being 6, he soon forgot his discomfort. At the same time, our doctor advised us to keep giving him gluten. So, we , ummm, gave him gluten again. the cycle repeated. At this point - I am still believing doctors so I'm not taking it totally seriously. DH is the Head Celiac around here so he was in charge of research and he reported to me that there's something new that's better than Endoscopy. I presumed he was getting this info from his GI - but it turns out he was getting his info from celiac.com.

Meanwhile - I keep wondering (hoping!) is it my imagination that DD6 gets better when he's off gluten and regresses when he has it?? As you are all probably aware - it's not like the symptoms are that easy to track. Then DH gets the test results and evidentally our boy is Enterolab's new valedictorian.

So now we are on our 3rd gluten challenge , with a ++ from EnteroLab, and THAT's about the time I find out EnteroLab is considered to be 'controversial'. But meanwhile i don't need any stinkin lab to tell me my kid throws up and writhes in pain on about his 4th day of eating gluten.

So, as of now, we are discussing with doctors...currently DS6 is sticking to his most recent gluten-free diet but I'm sure that's going to wear thin by the weekend. He is too young to understand internal damage, he just knows from pain. A little pizza..no pain. Lots of pizza, lots of pain.

And meanwhile, having read copious amounts here and elsewhere for the last few weeks, I'm realizing it is imperative that we test our totally asymptomatic 8 year old as well. New age, unpublished bunk or no, we are awaiting results from Enterolab if nothing else for comparison.

So, this leads me to the question at hand. Establishing a celiac houeshold is a totally different thing if we're talking about 3 our of 4 family members vs 2 out of 4. Right now there's a lot of "why me?" going on. If DD8 is (+++) it may become much much easier to set up the household. Meanwhile the weekend's coming and DD6 is getting tired of being gluten-free. Do I dare let him have gluten again ? Maybe this time he won't get sick from it (yeah right). How many times do we have to repeat the cycle for me to learn? For him to learn?

How much harder will it be when we finally decide what this household's gluten policy is going to be if we let DD6 go off the diet? If Enterolab was published and accepted of course I wouldn't monkey around with DD6's system. But our GI says Enterolab is meaningless bunk. So I hope you can understand my dilemma.

So anyway. Tha plan now is to take it one day at a time til we at least have word from EnteroLab about DS8. Then we will decide whether we want to believe in Dr Fine or not. Then we will decide how to approach the household. We are vegetarians so that makes being gluten-free all the more unpleasant -- the gluten-free pastas and fake pizzas are vile.

if anyone has any comments, esp about the on-and-off gluten-free thing, in terms of kids, please let me know. Oh and go easy on me if I am seeming like a total noob, OK? Thanks for reading, anyone who's gotten this far. HEIDI

[Jestgar]

If Enterolab was published and accepted of course I wouldn't monkey around with DD6's system. But our GI says Enterolab is meaningless bunk.

I'm just curious - is this the same guy that told you it was okay to give your child food that made him throw up and writhe on the floor in pain......?

[lonewolf]

I let my (then) 11 year old son go off and on the diet for a few months while we were trying to figure it all out. We had off and on episodes of stomach aches, bad behavior, emotional outbursts, etc. and finally decided that we were crazy to not see the clear signs. He's strictly gluten-free now and is doing great.

I met Dr. Fine in person a couple of weeks ago at a conference in the Seattle area. I have NO doubt now that he is completely right. He isn't a crook and his research isn't "bunk". What's bunk is another doctor trying to convince you that you're too stupid to see what's going on with your son and that you shouldn't trust your instincts as a mother.

I was just telling someone earlier today about a doctor who told me that changing my diet was crazy and that anyone who tried to tell me that my diet had anything to do with how I felt was a quack. This is the guy who told me to take several different horrible medications, "grieve the loss" of my active life, accept the fact that I would never be able to run or teach PE again and go back to school for job retraining - something I could do in a wheelchair. HE turned out to be the quack. I changed my diet and now I coach basketball, teach PE and run triathlons.

DON'T LISTEN TO THIS DOCTOR!

[darlindeb25]

Yeah, listen to Lonewolf! I wish I had known about celiac disease when my kids were young. Two of my sons have requested to be checked for celiac disease and their doctors told them they do not look celiac, it's not necessary to test them! My son Mike, at 2 weeks old had an ear infection. That poor baby was ill for the first 6 weeks of his life and finally the doctor put him on soy formula. Mike was a colicky baby too. When he was maybe 5 or 6, he would vomit in the night, while sleeping. I look back and I see so many signs of gluten intolerance. This same child was a bed wetter, had allergies, hay fever--now, he is 30, had GERD, aches and pains, etc. The doctor tells him he doesn't look celiac. Do we have 2 heads or something???????

My son Joe, is 25--he has been sick all winter. He was put on soy formula too, has ADD, learning disabilities, and terrible problems with anger. His doctor told him a month ago that he is developing asthma. Two weeks ago, he went to ER with earaches that just will not go away and he couldn't take it anymore. They found his breathing to be terrible, then found he has heart palpatations--130 per minute is his average, was as high as 150. He is seeing a heart specialist on Monday. In the meantime, the doctor told him that his thyroid has shut down and now he is on Synthyroid. He has been hoarse all winter, doesn't get better and the doc still doesn't think it necessary to check for celiac.

If I had known when they were young, I would have raised gluten free kids, I honestly would have.