Test gluten-free Diet Length Recommendations

[squili]

Hi everyone,

a bit of background: I have been gluten-free for a few years though I've never tested positive fo Celiac (only had the Iga) but feel much better w/o gluten. Anyway, my 2 yo daughter has been eating gluten since she was about 13 months (my husband is a gluten eater) and has never really exhibited any adverse reactions. Last month she had diarrhea for 5+ days and then a few days of vomiting on top of that. Now it could have been a stomach flu, rotavirus or ?, it's hard to tell. But since she had been getting some kind of fever and cold at least once a month since Nov I decided to try her out on a gluten-free diet. Of course the diarrhea and vomitting stopped right after but, again it could have run it's course if it was something else. I did talk her Dr into testing her (though he only ordered an IGA and I haven't yet received the results as he's been on vacation) which I had done right before we started the gluten-free diet.

Anyway, it's been a month on the gluten-free diet now and I was just wondering what length of time you would waiting before trying a gluten eating test? I was originally going to wait just a month, but I'm thinking we should wait another month at least. I would very much appreciate opinions and advice.

Thanks so much! ~Amelia

[squili]

hmmmm.... No one has any suggestions? opinions?

[Pacer]

Amelia

I *so do not want to give advice. Just want to answer so you don't feel like you're talking to a wall.

We had a similar scenario with my son and while we were tryign to figure out the testing thing (we wound up using Enterolab) , we had him on and off gluten about 3x. Each time, he made it about a week before totally losing motivation. At that point we had no test results so we figured a week was enough. Each time, after about 3 days of gluten, he was back to stomach cramps and GI symptoms.

Everyone's experience is so different - that's one of the many challenges of celiac disease. I am not recommending you do what we did. Just telling you our experience in case it helps.

Good luck. HEIDI

[dionnek]

Since the blood tests are so unreliable in kids that age, I would look into getting her genetically tested - we used Enterolab. I have a 2 1/2 yr old who had no symptoms so we just did the gene test (I"m the celiac) and she does have one of hte genes so we will probably have her tested at 3 or 4, unless she starts showing symptoms before. I would think that if you've noticed improvement now on the gluten-free diet already, that you could go ahead and reintroduce gluten and if she immediately has problems again, then you have your answer. Just remember that the tests (blood and biopsy) can not totally rule OUT celiac, escpecially at that age.

[FeedIndy]

I, too, hesitate to give advice, but I will share our experience. We did the gluten challenge because my kids didn't want anyone to "take their blood out." We took them off gluten for 10 days the first time. It didn't take an entire day to see the reactions after reintroducing gluten. Two weeks later, we tried it again in case it was a coincidence as my DD so desperately hoped. We had planned to wait a month after that and try again, but their reactions were so bad that DD begged us to skip the 3rd test. Since were were only doing the experiments for "proof" so the girls wouldn't cheat, that was good enough for us. However, we had an accidental glutening about a month later and both kids had a severe reaction again. They have now been completely gluten free for 4 months and are doing incredibly well!

[squili]

Thank you for your replies! I really just wanted to hear what other people think, so I really appreciate the input. I'm not putting much store by the Iga test, I just figured as long as I was planning a gluten-free diet I might as well see what the bloodwork would yeild. I think a gluten-free diet is a much better indicator of problems. From my own experience the longer I was off gluten the more apparent my reactions, even the subtle ones.

Thanks all ;+) ~Amelia

[Ed-G]

Personally, I wouldn't do it. I was discovered to have celiac disease back in the late 50's when ther were no tests for it, save elimination. Any gluten challenge would involve me being off a gluten-free diet for several months, and with no more than an inconclusive result to show for it.

ED

[Pacer]

Please everyone, keep it coming! (I realize I am not the OP, but..)

You have no idea how reading these repsonses can help a person stay motivated. Each time I see a person who has a similar situatino to mine, it gives me a bit more hope that we can do this.

I think in general anyone who is hanging out on this pre-DX board is going to have a huge level of anxiety and uncertainty. It really helps to read the success stories, as well as the struggles.

Thanks all - HEIDI

[gfp]

Erm I would I just don't think people want my opinion!!!!

My opinion is if a child doesn't want to give blood you slap them round the head until they do....

Sorry.... I can't accept not giving a few cc's of blood as a reason not to condemn a child to spend a lifetime in misery....or developing horrible diseases...

Having said that the tests are not so accurate on children, I might think that not doing the test because then the insurance won't pay again when they are older if its -ve is a better reason but being scared of needles is not an excuse.

[Nic]

Hi, I just wanted to point out that I have 2 kids, one celiac and one not. It is not uncommon for them to catch a cold a month since November and then to have a possible stomach virus with diarrhea and vomiting. That has been my year this year with my boys and it was not celiac related (just a rediculously bad year). With that being said, sometimes people have celiac and don't have any symptoms so the gluten free diet cannot hurt in any way. I can also relate to the person who said their child did not want to have their blood taken out. Both my sons have had medical problems their whole lives. We have had more blood drawn and tests done then I ever could have imagined. That is why I went through enterolab to have my youngest tested for the celiac gene because I didn't want to put him through any more. What ever a parent chooses to do is what is right for their child.

Nicole

[squili]

Thanks All.

I do definitly consider the colds/diarrhea as a normal possibility, which is why I was wanting to go longer than a month to see if she doesn't get sick then after re-introducing gluten see how it goes.. I hope she doesn't have any gluten problems. The blood draw went well. I talked to her about it all the way to the dr. office and I explained each step and that it would hurt a little but it would be ok, as well as telling herwhy. I told her the phlebotomist's name, we looked at the needle. She didn't cry at all, but did get a little squirmy at the end and want the needle out. I was pretty surprised she didn't cry at all. I think talking about it it helps tremendously. I don't think a slap upside the head would yeild much comfort for a blood draw...

I think everyone's opinion is valuable and valid. Gluten experiences are so varied I find it very helpful to have lots of input. I know only one other person who is gluten-free, so it's always good to swap ideas, opinions, advice, suggestions and experiences with as many people as possible who are dealing with it.

~Amelia

for those w/ Trader Joe's nearby - they have yummy gluten-free waffles, my daughter loves them.

[gfp]

Thanks All.

I do definitly consider the colds/diarrhea as a normal possibility, which is why I was wanting to go longer than a month to see if she doesn't get sick then after re-introducing gluten see how it goes.. I hope she doesn't have any gluten problems. The blood draw went well. I talked to her about it all the way to the dr. office and I explained each step and that it would hurt a little but it would be ok, as well as telling herwhy. I told her the phlebotomist's name, we looked at the needle. She didn't cry at all, but did get a little squirmy at the end and want the needle out. I was pretty surprised she didn't cry at all. I think talking about it it helps tremendously. I don't think a slap upside the head would yeild much comfort for a blood draw...

I think everyone's opinion is valuable and valid. Gluten experiences are so varied I find it very helpful to have lots of input. I know only one other person who is gluten-free, so it's always good to swap ideas, opinions, advice, suggestions and experiences with as many people as possible who are dealing with it.

~Amelia

for those w/ Trader Joe's nearby - they have yummy gluten-free waffles, my daughter loves them.

comforts not really important... you can always tie them down.

[FeedIndy]

I think it was valid in our case to go with a gluten challenge over blood tests. We allow our children to be involved in medical decisions when possible as it is her body and we try to respect that. The blood test is not reliable enough to force it on them when 1 child was already diagnosed. Good result on the diet was enough for me, and them. I didn't see a reason for additional testing when the children are so highly opposed to it.

[squili]

comforts not really important... you can always tie them down.

Ahh, GFP you are a funny one... at least I can only hope that you have avery dry sense of humor....

~Amelia