Celiac Disease?!!! - Mothering Forums

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#1 of 16 Old 07-06-2009, 11:41 PM - Thread Starter
 
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So here is the backstory- my son is 14 months old and and amazing! He got very very sick when he was 3 months old and spent 3 weeks in the hospital before being diagnosed with a dairy protein allergy. I cut out dairy out of my diet and things got better. He was a bigger kid- always abut 60-80 % in height and weight. Until he hit about 6 months- he just hasn't grown much since then. When he was 6 mos he was 27 in and 19.5 lbs. Today (14 mos) he was 28 1/2 inches and 20.5 lbs. He has been having diahhrea that has undigested food in it, I have noticed the circles under his eyes getting worse. He isn't too grumpy nor is his belly distended. But he dripped from 60% to 5th. The drs are testing him for celiacs and I should get the results on Friday. I am totally worried because he already can't eat anything with dairy in it, so if he can't eat gluten either- what will he eat? Does it sound to you like he has celiac? How old were you when you found out about your babies celiac's disease? Thanks!

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#2 of 16 Old 07-07-2009, 03:48 AM
 
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I don't have a celiac child, but I wanted to reassure you not to panic... there are A LOT of resources out there for you.

Due to the popularity of the GFCF diet for Autistic kids, there are a lot of products, recipes and websites out there for families on GFCF diets... comes in handy for those of us who have kiddos who are gluten and/or casein allergic/intolerant for other reasons.
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#3 of 16 Old 07-07-2009, 04:30 AM
 
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I agree with the pp. Take a deep breath. GFCF is very common and totally doable. We avoid a lot more than that and still eat very well. Let us know what the results are. I hope you guys find the answers you need
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#4 of 16 Old 07-07-2009, 05:18 AM
 
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My ds has coeliacs and yes, shares the symptoms that your ds has (athough there was more that had me thinking coeliacs and making the request to have the test when he was 2.5yrs).

We have been through periods of being GFCF and my dd is at the moment while I am seeing if she is dairy intolerant (she is already GF due to my ds not eating it).

It can be done and as mentioned above there are many options. I don't buy specialty food and do it all with traditional foods.

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#5 of 16 Old 07-07-2009, 09:53 AM
 
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I concur w/ pp's as well. It will be ok regardless. We are gf/df here as well. You might want to check out celiac.com as well. As to whether your son has Celiac's it certainly sounds like a possibility. If I was you I would do a gf trial regardless of the test results- you do know that the testing for small children is VERY inaccurate and very prone to false negatives. A negative test doesn't mean that your child does not have Celiac's. Heck the test isn't even terribly great for diagnosing adults!

Happily Married to my : 11 yrs- Mama to wild-eyed monkey boy 7-04, fiery little girl 4-07, and the happy smiley baby that sleeps 11-09!
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#6 of 16 Old 07-07-2009, 12:09 PM
 
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And even if he doesn't have Celiac, he may have a gluten (or other) intolerance.

Kathy, mother of 3, wife of 1. My new recipe blog: www.kathysrecipebox.wordpress.com (no longer searchable by allergen, but at least it doesn't have a virus!)
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#7 of 16 Old 07-07-2009, 04:59 PM
 
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Kids with Celiac often have a milk protien allergy...it often though clears up after being GF for a while...Its get easier!Whole foods and trader joes are a great place to start with getting to know easy things to buy and then work your way into making them your self.
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#8 of 16 Old 07-07-2009, 10:47 PM - Thread Starter
 
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How hard is it to go out to eat? I lvoe to cook so I am not so much worried bout him here at home, just at restaurants and when he goes to school. I am already stressing about school snacks- what if he eats someone elses? What about at bday parties? What if at the restaurant they give him gluten? I am the biggest worrier in the entire world and this is adding full to the fire.
It is better than the alternative- they are also testing for a pancreatic insufficiency? heard of that?

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#9 of 16 Old 07-07-2009, 10:52 PM
 
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Originally Posted by Mizyellow View Post
How hard is it to go out to eat? I lvoe to cook so I am not so much worried bout him here at home, just at restaurants and when he goes to school. I am already stressing about school snacks- what if he eats someone elses? What about at bday parties? What if at the restaurant they give him gluten? I am the biggest worrier in the entire world and this is adding full to the fire.
It is better than the alternative- they are also testing for a pancreatic insufficiency? heard of that?
We go out to eat. Often chains are the best. Celiac.com should have lists and there is a restaurant guide out there also. You get to know the places that are safest to eat at and stay with those.

We even have local bakeries now ( well an hour away) and often get a treat if we can . Actully I'm an hour north of you. You have Raisin Rack that has the best selection of GF goods , patty cake bakery has GF/DF desserts AND there is a support group a children hospital...Ive yet to check out.

Heck if you wanna PM me I'll even help you shop sometime
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#10 of 16 Old 07-07-2009, 10:56 PM
 
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Here are the local resources:
http://glutenfreepost.com/
http://www.glutenfreegang.org/

HTH
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#11 of 16 Old 07-07-2009, 11:20 PM
 
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It is better than the alternative- they are also testing for a pancreatic insufficiency? heard of that?
I don't know anything about his condition, but I know it seems overwhelming to think of all the things that your ds will be missing out on forever by being diagnosed with coeliacs - I went through a period of mourning on behalf of my ds...having a beer with a mate or dad, getting takeaways with mates etc.

But at the end of the day - not eating gluten is the "cure" to this disease without any ongoing issues or a need to take medication. That's pretty cool really. Also, as it's not an allergy you don't live in fear of cross-contamination. Yes, I take all precautions not to cross-contaminate but I don't live in fear of the consequences of a slip up (ie allergic reaction, yep still not good to "gluten" him but it's not life and death right then).

My ds was diagnosed at 2.5yrs and really "got it" as far as what he could and couldn't eat. By the time he was 3-3.5 he would ask people if things were gluten free and certainly never thought of sneaking anyone elses food. it did take a bit of explaining though that food touched by other gluten food was still not ok (he would reason that his friend offered him a piece of apple or whatever - but not take into account it might have been touching the sandwich). So I have just always encouraged his own snack box wherever we go (and often pack extras to offer friends so he still gets to share - coz I've found out a few times when my kids share their food that their friend has nothing to share back and my kid then goes hungry). My friends are really good and only put out food that is ok for ds and most even accommodate us by buying rice crackers etc even if it's not something they would normally have bought.

It is a pain as far as eating out (we went away last weekend to a small town and couldn't find anywhere that served GF food ) so had to drive to the next town coz we wanted a sit down meal opposed to stuff from the supermarket.

3.5yrs later and it's just a way of life now. I intend on writing a recipe book up for him that he can have when he leaves home lol.

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#12 of 16 Old 07-07-2009, 11:25 PM - Thread Starter
 
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Ok so what happens if I get Lennon on a GF diet and he is doing really well and then he accidentally eats something (even small) with gluten?

hippie.gifborn in the wrong era. Madly in love with my DH. Mama to my Beatles boys; L (6) and H (2). 
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#13 of 16 Old 07-07-2009, 11:34 PM
 
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If he is diagnosed with celiacs then there is nothing special to do if he does eat something, but you learn from the experience and figure out a way to not let it happen again.

He may or may not react negatively to it. My ds's BM would go very soft so I knew but not other signs, apparently some kids will vomit and get stomach cramps etc.

In the first year or so was a huge learning curve and a few mistakes. Our entire house went GF - I tossed everything from my pantry so there was no source of contamination in the hosue. I spoke to daycare and educated them on it. Had them make special playdough even (or not get it out on his days). We didn't cook on a bbq that other people had cooked their gluten containing foods and made sure bread didn't go into a toaster that had wheat bread. Butter and spreads were safe in our house from wheat crumbs etc.

I'm assuming you're not going GF just yet though? Once you get the blood results back they will want to do a biopsy to confirm it (I chose not to do this) so he'll still need to be eating the full amount of gluten until that happens to get an accurate result. For us, the positive blood tests and then the diet changes fixed the problem so I didn't doubt the results.

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#14 of 16 Old 07-08-2009, 12:43 AM
 
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Originally Posted by nathansmum View Post

I'm assuming you're not going GF just yet though? Once you get the blood results back they will want to do a biopsy to confirm it (I chose not to do this) so he'll still need to be eating the full amount of gluten until that happens to get an accurate result. For us, the positive blood tests and then the diet changes fixed the problem so I didn't doubt the results.
Ditto! We choose not to get a biopsy at this time also. We choose to let her heal and wait till she is old enough to make the choice to get tested on her own.
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#15 of 16 Old 07-08-2009, 12:55 AM - Thread Starter
 
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I will not be going GF just yet- I def want to hear the results- esp if it is the pancreatic disorder- no need to take him off anything at that point! I am anxiously awaiting the results. Patience is a virtue I lack and it is hard to not call his Dr office- even though he just gave blood yesterday!

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#16 of 16 Old 07-18-2009, 01:38 AM
 
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Have you heard anything yet?
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