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Not Sure If Son Has Celiac?


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#1 Izak's Mom

 
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Posted 03 July 2006 - 05:37 PM

Hi all - I'm new here and wasn't sure where to post this...here's my question:
My son will be one year old on July 12th. Since he started eating solid foods (from about 5 mos.), he's had chronic diarrhea. The thing is, this is his only 'symptom'. He eats like a horse, has been steadily gaining weight and is not in any kind of abdominal distress. His poop is another story - totally gross blow outs. Like, I had to buy vinyl undies to contain his diapers overnight after deciding I couldn't deal with having to wash his all crib bedding every morning (we're talking poop EVERYWHERE). We first tried cutting out dairy & eggs, but that didn't make a difference. Then my doctor suggested a wheat allergy, so for the past month or so, we've been on a WF/gluten-free diet and lo and behold, HE HAS SOLID POOPS! I hate to be so excited about a turd, but seriously, if you'd seen what it looked like before and after, you'd be excited too! So basically I'm wondering if it's possible for him to have Celiac disease, but to have it only manifest as chronic diarrhea without any of the malnutrition issues. Any ideas? Thanks!
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DS1&only(so far!): born 7/12/05 * chronic diarrhea from age 5 mos. * WF/gluten-free from age 9 mos. * NO MORE LOOSE POOP!
10/19/2006 Tested positive for DQ2 Heterodimer (HLA DQA1*05/DQB1*02) and negative for HLA DQ8. Have followup appt. with ped. GI in December!
Update: Told GI I was unwilling to do serum tests (give him gluten). GI said if what I was doing works, then keep on keepin' on! Happy, healthy & nearly two now! Occasional rash & loose poop from drinking bathwater, so switching to all gluten-free beauty/personal products.

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#2 queenofhearts

 
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Posted 03 July 2006 - 05:41 PM

Hi all - I'm new here and wasn't sure where to post this...here's my question:
My son will be one year old on July 12th. Since he started eating solid foods (from about 5 mos.), he's had chronic diarrhea. The thing is, this is his only 'symptom'. He eats like a horse, has been steadily gaining weight and is not in any kind of abdominal distress. His poop is another story - totally gross blow outs. Like, I had to buy vinyl undies to contain his diapers overnight after deciding I couldn't deal with having to wash his all crib bedding every morning (we're talking poop EVERYWHERE). We first tried cutting out dairy & eggs, but that didn't make a difference. Then my doctor suggested a wheat allergy, so for the past month or so, we've been on a WF/gluten-free diet and lo and behold, HE HAS SOLID POOPS! I hate to be so excited about a turd, but seriously, if you'd seen what it looked like before and after, you'd be excited too! So basically I'm wondering if it's possible for him to have Celiac disease, but to have it only manifest as chronic diarrhea without any of the malnutrition issues. Any ideas? Thanks!

Sure sounds like it to me! I've just been diagnosed at the age of 50 but have had trouble with recurrent diarrhea since childhood... there are all sorts of symptoms, variations & combinations, & if the gluten free diet is helping, I'd say that's almost a dead certainty that he is at least gluten intolerant.

And this may be the one place on earth where almost everybody has gotten excited about a turd! You're in good company here!

Best of luck,
Leah
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The Queen of Hearts,
She made some tarts
All on a summer's day.
The Knave of Hearts,
He stole the tarts
And took them clean away.

Diagnosed at age 49 by biopsy 31 May 2006

Learning how to bake those tarts gluten-free!

#3 AndreaB

 
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Posted 03 July 2006 - 06:59 PM

Sounds like you have your answer. He may have a gluten intolerance and not full blown celiac, but both require a life long commitment to gluten free.

Welcome. :D You will find lots of people here who can help you.
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Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.


#4 TCA

 
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Posted 04 July 2006 - 07:15 AM

My son went through tons of test and was inconclusive for celiac. a diet trial is how we got our answer too. I'm glad he's doing better and you figured it out so young. My son was 3 before we did the diet trial. It was amazing at the response.
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If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.
Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)
Husband - Type 1 diabetic, Negative bloodwork
Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06
Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05
"All things happen for good for those who love God..." Romans 8:28

#5 Izak's Mom

 
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Posted 04 July 2006 - 09:00 AM

Thanks for all your replies - I feel much better about the diet. For whatever reason, some people - friends even! - don't seem to believe there's a problem unless you have an "official" diagnosis...I mean, how much more "official" does gross yellow squirts vs. nice brown turds get? (sorry to be gross, but it's true!)

And it seems like I'm seeing more and more confirmations of his intolerance every day - like yesterday we were in a restaurant and he managed to eat/suck 3 big pickles before I realized that they weren't 'on his list' - and bam! this morning there was gross yellow squirts along with his regular poop. Fortunately, I've found that the local supermarket has a pretty decent section of WF/gluten-free foods - Ike *LOVES* the Van's apple-cinnamon waffles, and they even sell the Red Mill gluten-free-flour baking mix. I've been experimenting with the whole gluten-free-baking thing - made a killer banana bread and an icky pumpkin bread, but it's nice to know that there's all kinds of good recipes out there.

So a couple of other questions: is it worth doing any of the blood or whatever tests at this point? I suspect that my husband either has Celiac or is wheat intolerant, since he had all kinds of bowel issues as a child and has always been a 'loose' guy, poop-wise. Although he doesn't do anything about it, diet-wise, and I think it would take a whole lot of convincing from me for him to try. But I believe now that Izak gets it from his Dad, and the WF/gluten-free diet has worked thus far...so, should we test? We have his one-year well-baby appt. coming up in a couple weeks and I'm wondering if I should ask his doctor about it.

Also - this may sound stupid - but how do you deal with condiments? Izak loved ketchup before I realized it wasn't good for him. And pickles he'd eat by the fistful if I let him...do you carry around little bottles of gluten-free stuff or what? Does anyone make gluten-free ketchup packets?

Thanks so much to all of you for your help!!
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DS1&only(so far!): born 7/12/05 * chronic diarrhea from age 5 mos. * WF/gluten-free from age 9 mos. * NO MORE LOOSE POOP!
10/19/2006 Tested positive for DQ2 Heterodimer (HLA DQA1*05/DQB1*02) and negative for HLA DQ8. Have followup appt. with ped. GI in December!
Update: Told GI I was unwilling to do serum tests (give him gluten). GI said if what I was doing works, then keep on keepin' on! Happy, healthy & nearly two now! Occasional rash & loose poop from drinking bathwater, so switching to all gluten-free beauty/personal products.

#6 TCA

 
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Posted 04 July 2006 - 12:10 PM

If what you're doing is working, I would be hesitant to put him through more tests. We went through all of them twice and got inconclusive results, so we did a diet trial and got our answers. Tests are very inconclusive under 5. Your son is so cute!! Does he have long thick eyelashes? That is another symptom that both my kids have. It would probably be good for your husband to be tested. If you want to rule out celiac for your son, a genetic test can be done while gluten-free. My kids had it and both had genes for celiac and sypmtoms, so that's how we got a diagnosis. If your husband has it, it might put the puzzle together for you. I didn't think I had any problems with gluten, but after going gluten-free for nursing my daughter I saw drastic improvements in my health and now think I'm gluten intolerant. I wish I had beed tested before going gluten-free now. Don't want to go back now.

follow your instincts on your son, though. Testing can be done later if it becomes an issue.

BTW, I have alist for my son of things he eats. PM me your e-mail address if you want a copy
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If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.
Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)
Husband - Type 1 diabetic, Negative bloodwork
Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06
Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05
"All things happen for good for those who love God..." Romans 8:28

#7 Guest_nini_*

 
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Posted 04 July 2006 - 02:46 PM

sure sounds like it could be Celiac, or at the very least Gluten Intolerance...

as far as pickles and the restaurant is concerned, I'd be more concerned with cross contamination at the restaurant than the actual pickles, a lot of pickles are safe. Also, Heinz ketchup is gluten-free. Most restaurants carry Heinz ketchup and if they don't you can raid McDonald's ketchup supply! (LOL!)

there is a learning curve at the beginning of the diet because gluten can be hidden in a lot of things like seasonings and sauces, and isn't always obvious.

You are in the right place to "get excited about a turd"! I remember the first time my daughter had a formed bm and I was so excited! I swear I thought I would NEVER see that child have formed poo!

I wouldn't worry about any further testing with him as long as he continues to improve on a strict gluten free diet. Initially he may also be intolerant of dairy as well, something to consider.

If you can convince your husband to get tested, do the Enterolab route. That seems to be much more accurate than the blood tests and biopsies...

feel free to e-mail me if you have any questions, my daughter has been on the diet since she was three, and she's doing great now. I think they adapt so much better to it when they are younger. They may rebel when they are teens, but hopefully not. I hope I can instill in my daughter just how important it is for her to stay gluten-free.

my e-mail is nisla@comcast.net
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#8 Nic

 
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Posted 04 July 2006 - 03:26 PM

Hi, since you already went gluten free, to test him would mean giving him gluten again. The biopsy will only come out positive if they are actively sick. A doctor once suggested re testing after my son was already gluten free for 3 months. That would mean not only making him sick again, but also reintroducing him to all the foods that he always loved before being gluten free. I did not have the heart to do that to him. If you see improvement from the diet than that is great :D . As someone else said, you can always have his blood tested to see if he has the genetic make up to be a Celiac. But if he isn't, you still have the proof that he is gluten intolerant and the diet is the same. It sounds like you are doing the right thing.

Nicole
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#9 Izak's Mom

 
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Posted 04 July 2006 - 03:39 PM

Thanks for everyone's advice. I can't see giving Ike gluten again just to do a test - I already know it will make us miserable! I checked out Enterolab, and it looks like a good option. The full panel is pretty expensive though - has anyone been able to get their insurance to cover it? Maybe if I get my son's doc to 'prescribe' it?
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DS1&only(so far!): born 7/12/05 * chronic diarrhea from age 5 mos. * WF/gluten-free from age 9 mos. * NO MORE LOOSE POOP!
10/19/2006 Tested positive for DQ2 Heterodimer (HLA DQA1*05/DQB1*02) and negative for HLA DQ8. Have followup appt. with ped. GI in December!
Update: Told GI I was unwilling to do serum tests (give him gluten). GI said if what I was doing works, then keep on keepin' on! Happy, healthy & nearly two now! Occasional rash & loose poop from drinking bathwater, so switching to all gluten-free beauty/personal products.

#10 Fiddle-Faddle

 
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Posted 04 July 2006 - 04:38 PM

And it seems like I'm seeing more and more confirmations of his intolerance every day - like yesterday we were in a restaurant and he managed to eat/suck 3 big pickles before I realized that they weren't 'on his list' - and bam! this morning there was gross yellow squirts along with his regular poop. Izak loved ketchup before I realized it wasn't good for him. And pickles he'd eat by the fistful if I let him...do you carry around little bottles of gluten-free stuff or what? Does anyone make gluten-free ketchup packets?

Thanks so much to all of you for your help!!


I thought ketchup and pickles were gluten-free? :blink:
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#11 TCA

 
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Posted 04 July 2006 - 06:42 PM

Our insurance would cover prometheus, but not enterolab. different tests, though. prometheus is the standard blood tests and genetic testing.
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If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.
Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)
Husband - Type 1 diabetic, Negative bloodwork
Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06
Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05
"All things happen for good for those who love God..." Romans 8:28

#12 Izak's Mom

 
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Posted 05 July 2006 - 07:34 AM

I thought ketchup and pickles were gluten-free? :blink:


I thought that distilled vinegar was made by pouring the vinegar through wheat, and since pickles & ketchup are both made with distilled vinegar, that put them on the 'no-no' list...but it sounds like this isn't the case, since according to folks here, Heinz ketchup is gluten-free and the ingredients include distilled vinegar. Clarification, anyone? Thanks!
  • 0

DS1&only(so far!): born 7/12/05 * chronic diarrhea from age 5 mos. * WF/gluten-free from age 9 mos. * NO MORE LOOSE POOP!
10/19/2006 Tested positive for DQ2 Heterodimer (HLA DQA1*05/DQB1*02) and negative for HLA DQ8. Have followup appt. with ped. GI in December!
Update: Told GI I was unwilling to do serum tests (give him gluten). GI said if what I was doing works, then keep on keepin' on! Happy, healthy & nearly two now! Occasional rash & loose poop from drinking bathwater, so switching to all gluten-free beauty/personal products.

#13 penguin

 
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Posted 05 July 2006 - 07:46 AM

I thought that distilled vinegar was made by pouring the vinegar through wheat, and since pickles & ketchup are both made with distilled vinegar, that put them on the 'no-no' list...but it sounds like this isn't the case, since according to folks here, Heinz ketchup is gluten-free and the ingredients include distilled vinegar. Clarification, anyone? Thanks!



Distillation is how vinegar and hard alcohol are made. There is a mash made from grains, usually, and the mash is heated and the vapor goes through a column and condenses down into the distillate, which is the vinegar or alcohol. Distillation is a bit contraversial, but the gluten protein is generally thought of as being too big to make it into the distillate. It's an over-simplified explanation, but that is generally how it works. Distilled liquids are considered gluten-free unless some of the mash is added back in.

Most vinegar in the US is made from corn, anyway. Heinz vinegar definitely is. The only non-gluten-free vinegars I know of are malt vinegar (barley) and apple cider flavored vinegar. Actual apple cider vinegar is safe. Beware other flavored vinegars.

Here's a much more in-depth explanation of distillation: http://en.wikipedia....ki/Distillation
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Alright, don't worry even if things end up a bit too heavy
We'll all float on, alright
Well we'll float on good news is on the way...

#14 Ozwizard182

 
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Posted 03 March 2010 - 06:33 PM

I'm happy FOR YOU! :lol: I think everyone, including you should go by the way of GLUTEN FREE; if it's so bad that it's destroying 1 out of 133 people it can't be good anyway, and it causes bloating and all that stuff. Perhaps people aren't fat as they get older just hiding symptoms of Celiacs.
Eat- get a little bigger eat,- get a little bigger.
It's difficult to go all Gluten Free at first, maybe easier if you don't have the deeply rooted symptoms making your life miserable as it does ours, but perhaps in the long run it's better for everyone's system.
Dr Hulda Clark stated not to eat BROWN RICE years ago, perhaps it is just the Best thing to do. So many people are in denial, "Oh I feel fine." Truth is many don't like to or are embarrassed to tell the truth even to their personal doctors.
Good for you and your baby. I also read that doctors feel when parents introduce the babies on biscuits, crackers and similar first foods, they are introducing them to Celiac's symptoms
**Possibilities** Thanks Mah for all the Graham Crackers!
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#15 ChrisG

 
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Posted 08 March 2010 - 07:19 PM

I believe in testing for a couple of reasons. First, if it is Celiac then maybe his dad would test also. As my pediatric GI put it "Don't put a life long diet on your son without a diagnosis." Second, if you have a diagnosis and can take the medical deduction on your taxes...you can claim all your gluten free food. For me it is about $1500 to $2000 extra per year to deduct.
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