New! A Few Questions...

[SweetDsMom]

Hello everyone. I'm new here - just found out my son most likely has celiac disease. We're actually waiting on the final blood results to come back, but starting Friday, we've moved to a gluten free diet and I feel like I've seen some changes in him for the better.

He's 17 months old, and has been sick/ out of sorts for the past month. Just in this weekend, his diarrhea has tapered off, and he is starting to get interested in things again. Even though he still has NO desire to walk.

Anyhow, a couple things I wanted to ask about. First, how long did it take for your child to bounce back once diagnosed? While it's been only a month, I miss my sweet little boy! He's still very "fragile" and whiny. I'm happy to see the progress I've seen in only 3 days, but I'm just wondering how much longer to expect this to go on.

Along this front, was your childs sleep habits messed up? DS was a GREAT sleeper, and now he might sleep for 6 hours straight, then he's up every 2 hours after that. Naps- HA! We're lucky if we get 45 mins from him - and he used to be a solid 2 hour napper kid.

Second, and I feel my ignorance coming through on this, but I've been reading a lot about cross-contamination. The information makes me feel like my son will die if I touch a piece of bread before making his food! We, of course, want to be as vigilant about this as we can be, so I'm trying to get a grasp of how pervasive gluten is and how easily it can be transferred.

(As we haven't gotten the final results yet, we haven't discussed yet if we will go gluten-free or not in our home. I'm using this time to read up and prepare so that if it is an official "yes", we can move forward w/ a good, base understanding).

Any feedback/insight is greatly appreciated!

Sarah

[Mizzo]

Hello everyone. I'm new here - just found out my son most likely has celiac disease. We're actually waiting on the final blood results to come back, but starting Friday, we've moved to a gluten free diet and I feel like I've seen some changes in him for the better.

He's 17 months old, and has been sick/ out of sorts for the past month. Just in this weekend, his diarrhea has tapered off, and he is starting to get interested in things again. Even though he still has NO desire to walk.

Anyhow, a couple things I wanted to ask about. First, how long did it take for your child to bounce back once diagnosed? While it's been only a month, I miss my sweet little boy! He's still very "fragile" and whiny. I'm happy to see the progress I've seen in only 3 days, but I'm just wondering how much longer to expect this to go on.

Along this front, was your childs sleep habits messed up? DS was a GREAT sleeper, and now he might sleep for 6 hours straight, then he's up every 2 hours after that. Naps- HA! We're lucky if we get 45 mins from him - and he used to be a solid 2 hour napper kid.

Second, and I feel my ignorance coming through on this, but I've been reading a lot about cross-contamination. The information makes me feel like my son will die if I touch a piece of bread before making his food! We, of course, want to be as vigilant about this as we can be, so I'm trying to get a grasp of how pervasive gluten is and how easily it can be transferred.

(As we haven't gotten the final results yet, we haven't discussed yet if we will go gluten-free or not in our home. I'm using this time to read up and prepare so that if it is an official "yes", we can move forward w/ a good, base understanding).

Any feedback/insight is greatly appreciated!

Sarah

[Mizzo]

Hi Sarah,

Firstly understand every Celiac case is different. As much as I hated to hear that from our Doc it's true.I have talked to many adults and parents of celiac disease and they all had a different recovery story, anywhere from 5 days up to 2 months. but eventually everyone gets there. It takes 6 months to a year+ for the Villi to grow back completely depending on their level of Atrophy.

Unfortunately it's a wait and see , disease.

As far as Cross contamination, since you still control the food going into your child and home you needn't go Gluten free unless you want to. Just be very careful about how his food is prepped . I just prep my girls stuff first. some people find using plastic utensils and paper plates for the celiac disease child works for them. I keep my Gluten food in one refrigerator drawer and one cabinet only. But my girl can get her own drinks and snacks so I have to separate.

I did find it helpful to insure all my frig condiments were gluten-free( just easier that way), and I replaced the toaster, the knife block and thoroughly cleaned the cabinets and put a cover on my silverware to prevent cc. Some people replace blenders and mixers, I just thoroughly cleaned them.

Our dietician explained it this way, a thumbnail size of gluten is the max amount a celiac disease person should encounter per day, when you have healthy Villi.

You will figure out what works best for you.

good luck .

Maureen

[SweetDsMom]

Thanks Maureen- that's a help!

[T.H.]

I'd agree - every experience is different. Just can't know how it's going to go or how long it will take.

My own dietician disagrees with Maureen's on the amount of gluten that can harm a celiac person, however. Makes me curious why, although looking at the official recommendations, I wondered about this. Officially, studies have found that celiacs had no damage if they got 20ppm (parts per million) of gluten or less. Which is equivalent to 20 drops of water diluted into 50 liters (roughly the fuel tank capacity of a compact car), or about 10 minutes out of a year.

And 20 drops would be about the right size of food listed, thumbnail size, but that's if I was eating 50 liters worth of food, which I'm not. Don't know if that's where the amount came from, but if you know, Maureen, I'd be really interested in finding out! :-)

As for how it can transfer, a touch can definitely transfer it. I think the best way to explain cross-contamination that resonated with me was this (from my hubby, LOL): treat gluten as though is is blood from raw meat, that can never be cooked to be safe, and clean appropriately.

We use separate cutting boards for raw meat, we always wash our hands and surfaces and utensils that have touched raw meat before they touch anything else. Just follow that rule with gluten. The only difference is, you need to be aware of what surfaces are porous and can absorb gluten to release it later into other foods. Wood and plastics can do that, and so can scratched non-stick pans.

Also, remember, this is raw meat that 'never cooks.' Think about what pans you have with bolts or little crevices that you can't ever fully clean out. That's a good hiding place for gluten, and it can release back into food you cook if you cook gluten in it.

I know some people are more or less sensitive, so I'm sure you'll have to see what seems to affect your son, eh? For me? If anything has touched gluten, I react very badly, and so does my daughter. And I'll be honest, we all went gluten free because we found it too difficult to avoid cross-contamination. Thinking about how often to wash, and whether something had been cleaned off or scoured properly, or whether crumbs might have fallen and contaminated something? It made life much more stressful than simply going Gluten free. I know that many families manage it just fine, ours just happens to be a little worry-wartish, so we stressed too much, LOL.

It's hard not to worry about it, at first, I think, yes? I mean, we love our kids, and here's this stupid invisible thing that can hurt them and we might not even see it. IT takes a while to adjust to it, but it happens.

Although for your little one, you'll have to think about more stuff, since he's so small. Whatever touches/goes into his mouth can't have gluten. So lotion on his hands, soap or shampoo in his bathwater that he might try and drink, cleaning residue left on the floors or carpets that he might lick, cat litter (we won't even say what babies try to do to that, eh?), lipstick on mom's lips, playdough...it'll all give him gluten.

But when they are off gluten and feeling better - really, it's wonderful. So, so worth it!

Hello everyone. I'm new here - just found out my son most likely has celiac disease. We're actually waiting on the final blood results to come back, but starting Friday, we've moved to a gluten free diet and I feel like I've seen some changes in him for the better.

He's 17 months old, and has been sick/ out of sorts for the past month. Just in this weekend, his diarrhea has tapered off, and he is starting to get interested in things again. Even though he still has NO desire to walk.

Anyhow, a couple things I wanted to ask about. First, how long did it take for your child to bounce back once diagnosed? While it's been only a month, I miss my sweet little boy! He's still very "fragile" and whiny. I'm happy to see the progress I've seen in only 3 days, but I'm just wondering how much longer to expect this to go on.

Along this front, was your childs sleep habits messed up? DS was a GREAT sleeper, and now he might sleep for 6 hours straight, then he's up every 2 hours after that. Naps- HA! We're lucky if we get 45 mins from him - and he used to be a solid 2 hour napper kid.

Second, and I feel my ignorance coming through on this, but I've been reading a lot about cross-contamination. The information makes me feel like my son will die if I touch a piece of bread before making his food! We, of course, want to be as vigilant about this as we can be, so I'm trying to get a grasp of how pervasive gluten is and how easily it can be transferred.

(As we haven't gotten the final results yet, we haven't discussed yet if we will go gluten-free or not in our home. I'm using this time to read up and prepare so that if it is an official "yes", we can move forward w/ a good, base understanding).

Any feedback/insight is greatly appreciated!

Sarah