Any One Else's Child Diagnosed But Asymptomatic?

[Grace'smom]

I'm thinking there aren't too many kids out there, save for the siblings who were tested once their brother/sister was diagnosed, who were diagnosed with celiac disease but were "silent celiacs." I wondered if there were any other moms/dads on the board here whose kids did not have stomach/bowel issues, headaches, etc. as my 6 yr old did not. She is still, two mos. into the diagnosis, doing some grieving over this and it makes me sad. I have her speaking with a counselor, weekly, who works specifically with kids with unique diagnoses or life situtations. She's been great; its just that my little one is still struggling, and I wondered if anyone else out there had a child who had their world rocked upside down with the diagnosis, becz going gluten free didn't make a physical difference to them (symptom-wise) or alleviate any discomfort. Any input is appreciated. Emily

[mommyto3]

My son's gluten intolerant and right on the cusp of having an autoimmune reaction to gluten so I think he'd be labeled "gluten intolerant" at this point. Hopefully it doesn't progress into full blown Celiac like me.

He had absolutely no physical symptoms (which makes it so hard to explain why he can't eat gluten!). His symptoms were completely behavioural. Without fail, I could tell within 30 minutes if he had eaten gluten. Bouncing all over, unable to stop and focus. Angry...oh god the anger was unbelievable. Screaming, hitting, literally like a wild animal sometimes. He did get some dermatitis hepaforis (sp) on his face but that was the only time we actually witnessed a physcal symptom. Since going gluten free, completely different child.........

[bbuster]

I'm thinking there aren't too many kids out there, save for the siblings who were tested once their brother/sister was diagnosed, who were diagnosed with celiac disease but were "silent celiacs." I wondered if there were any other moms/dads on the board here whose kids did not have stomach/bowel issues, headaches, etc. as my 6 yr old did not. She is still, two mos. into the diagnosis, doing some grieving over this and it makes me sad. I have her speaking with a counselor, weekly, who works specifically with kids with unique diagnoses or life situtations. She's been great; its just that my little one is still struggling, and I wondered if anyone else out there had a child who had their world rocked upside down with the diagnosis, becz going gluten free didn't make a physical difference to them (symptom-wise) or alleviate any discomfort. Any input is appreciated. Emily

Well, yes and no.

When I first heard about Celiac (a dear friend had been recently diagnosed) she was ticking off symptoms, and I thought of my son.

Threw up easily

Dark circles under the eyes

big belly

anemia

joint pain (at age 5, for about a 2-week period)

short stature

The short stature was the big one, but accompanied by other things, that prompted me to get him tested, and he was positive (blood test and upper GI scope).

But all of those things could be explained away.

Throwing up - he gagged easily. He also had a lot of separation anxiety, and would cry until he threw up (even just going to bed at night)

Dark circles - he stays up late - has trouble sleeping

His dad and grandpa had a disproportionately big belly. (Grandpa was already deceased, but I suspect he may have had Celiac)

The joint pain - his dad had Legg Perthes at the same age and wore a leg brace for 2 years - we took DS to an orthopedist, and he did Xrays and said everything was fine - and after about 2 weeks it was, never to show up again.

Short stature - after being gluten-free his growth improved from ~1 inch per year to about 2 inches per year. But still way behind - below 1st percentile. We followed up with an endocrinologist, and he has done growth hormones and shot up 4 inches the first year. And when he started growing taller the distended belly went away.

So all of these things might be because of or related to Celiac, but then again they might not.

He never did, and still does not have any classic GI symptoms. That's good and bad - good that he does not have to suffer them, but bad in terms of knowing whether or not he accidentally got something with gluten in it. Made it especially tough in the early days of trying to stay gluten-free.

My son was diagnosed at age 10; he did plenty of grieving, but accepted this with very few strays (eating gluten on purpose). Time, and my learning to cook his favorites, made it better, but it will always be hard to be different.

Now he's in high school, so we face Homecoming dinner/dance, going out for pizza, etc. And soon after will be college. Staying gluten-free requires planning ahead, and he is not much of a planning ahead type of kid (understatement). So I have been there for him. But we are trying to transition for him to take care of things himself - cooking, ordering at restaurants, reading labels, choosing snacks, etc.

I understand you are sad and your daughter is sad, and I think that is very normal for both of you. Two months is not a long time. The grieving will diminish (most likely) with time, but every day, many times a day she will see people eating cake, or drive by a donut shop, or see a pizza commercial, etc.

It's hard.

I don't have Celiac, but I liken it to having a miscarriage. You cry and cry, and then you go out into the world, and everywhere you see babies. So you cry more. But there will come a day when you can see your best friend's new baby, and not feel sad. You will always know that something is missing, but you learn to deal with it, and it just becomes part of your life.

Sorry this is so long, but I feel like I have just had therapy by sharing our story.

Good luck and hang in there.

Bev

[cassP]

an article out of the Celiac Research center in Columbia University said only 1 out of 6 Celiacs display gut symptoms

[Grace'smom]

Well, yes and no.

When I first heard about Celiac (a dear friend had been recently diagnosed) she was ticking off symptoms, and I thought of my son.

Threw up easily

Dark circles under the eyes

big belly

anemia

joint pain (at age 5, for about a 2-week period)

short stature

The short stature was the big one, but accompanied by other things, that prompted me to get him tested, and he was positive (blood test and upper GI scope).

But all of those things could be explained away.

Throwing up - he gagged easily. He also had a lot of separation anxiety, and would cry until he threw up (even just going to bed at night)

Dark circles - he stays up late - has trouble sleeping

His dad and grandpa had a disproportionately big belly. (Grandpa was already deceased, but I suspect he may have had Celiac)

The joint pain - his dad had Legg Perthes at the same age and wore a leg brace for 2 years - we took DS to an orthopedist, and he did Xrays and said everything was fine - and after about 2 weeks it was, never to show up again.

Short stature - after being gluten-free his growth improved from ~1 inch per year to about 2 inches per year. But still way behind - below 1st percentile. We followed up with an endocrinologist, and he has done growth hormones and shot up 4 inches the first year. And when he started growing taller the distended belly went away.

So all of these things might be because of or related to Celiac, but then again they might not.

He never did, and still does not have any classic GI symptoms. That's good and bad - good that he does not have to suffer them, but bad in terms of knowing whether or not he accidentally got something with gluten in it. Made it especially tough in the early days of trying to stay gluten-free.

My son was diagnosed at age 10; he did plenty of grieving, but accepted this with very few strays (eating gluten on purpose). Time, and my learning to cook his favorites, made it better, but it will always be hard to be different.

Now he's in high school, so we face Homecoming dinner/dance, going out for pizza, etc. And soon after will be college. Staying gluten-free requires planning ahead, and he is not much of a planning ahead type of kid (understatement). So I have been there for him. But we are trying to transition for him to take care of things himself - cooking, ordering at restaurants, reading labels, choosing snacks, etc.

I understand you are sad and your daughter is sad, and I think that is very normal for both of you. Two months is not a long time. The grieving will diminish (most likely) with time, but every day, many times a day she will see people eating cake, or drive by a donut shop, or see a pizza commercial, etc.

It's hard.

I don't have Celiac, but I liken it to having a miscarriage. You cry and cry, and then you go out into the world, and everywhere you see babies. So you cry more. But there will come a day when you can see your best friend's new baby, and not feel sad. You will always know that something is missing, but you learn to deal with it, and it just becomes part of your life.

Sorry this is so long, but I feel like I have just had therapy by sharing our story.

Good luck and hang in there.

Bev

Bev, thanks for your post. It was cathartic for me to read it, ad the last paragraph about likening it to a miscarriage brought mega tears to my eyes. Having lived through that as well, I can see the link. I miss the joy in my daughter's eyes, I never knew this would be SO disruptive to her, emotionally, but where she is especially sensitive and introspective I think she's mulling a lot over inside right now. We had a great day today getting her feelings out in a journal. She cuts out pictures of mood faces and then colors a picture of how she's feeling, and directs me to write the words. After that, it was if a pound of lead left her shoulders and she was able to fly free the rest of the day, having fun swimming and just being a kid. Thanks for all the time you took to share with me. Hugs, Emily

[bbuster]

.. We had a great day today getting her feelings out in a journal. She cuts out pictures of mood faces and then colors a picture of how she's feeling, and directs me to write the words. After that, it was if a pound of lead left her shoulders and she was able to fly free the rest of the day, having fun swimming and just being a kid. Thanks for all the time you took to share with me. Hugs, Emily

Emily,

That's great to hear - you are doing all the right things and all that you can. Celebrate the small victories and take one day at a time.

Hugs to you too!

Bev

[nmlove]

My sons do display GI symptoms but not horribly so, not enough to know if they have an accidental glutening. It's taken months for my oldest son's levels to rise to show he's consuming gluten somewhere and during that time, he's had only occasional bouts of diarrhea. I'm talking one episode every now and then compared to his going upwards of 6+ times a day pre-diagnosis. It's a struggle and it's always there, will always be a part of them. One thing I did with my son at diagnosis - though he was younger than your daughter - was to find his favorites immediately. That was cereal and pancakes. Once that was done, I could go on to pizza, mac-n-cheese, etc. He still gets sad now and again when he sees something yummy and can't have it because it's gluten-free (well, that's not my only reason, haha!). But he does well with it.

You sound like a great mom in trying to help your daughter. Best of luck!

[StephanieL]

Yes, our son was totally asymptomatic.

[Beth03456]

My son was also asymptomatic, except that he didn't grow or eat much, and slept a lot prior to diagnosis at age 3. We don't know if he gets gluten now or not - he's never gotten sick as far as I can tell.

He occassionally asks when he can stop being on a gluten free diet.

[Pheebers]

My daughter's asymptomatic, except for short stature. Her doctor was concerned at her 12-year-old physical that her growth curve had leveled out, so sent us to an endocrinologist.... and surprise (3 weeks ago) she has celiac. She has always been small, but so was I, and now I'm 5'5", so no one thought it strange. Apparently all of her numbers (blood tests, endoscopy biopsy results) are off-the-charts positive so there's absolutely no question.

We're all in shock. She's always been such a healthy girl. She doesn't even have any allergies or lactose intolerance although her fraternal, non-celiac twin sister has. She's a very athletic competitive gymnast whose favorite foods are pasta, bagels, and take-out pizza.

We're meeting with a nutritionist on Tuesday to learn more about transitioning her to a gluten-free diet, and I just feel so sad for her. I'm very positive and upbeat around her, but my heart is breaking. She's about to enter 7th grade and has loved gluten all of her life. It's going to be a tough year!

[kareng]

My teen boys have no real symptoms and are good size. They have had some odd blood tests and will be getting more. I'm afraid it will be hard to convince them if they need to be gluten-free.

[Grace'smom]

My daughter's asymptomatic, except for short stature. Her doctor was concerned at her 12-year-old physical that her growth curve had leveled out, so sent us to an endocrinologist.... and surprise (3 weeks ago) she has celiac. She has always been small, but so was I, and now I'm 5'5", so no one thought it strange. Apparently all of her numbers (blood tests, endoscopy biopsy results) are off-the-charts positive so there's absolutely no question.

We're all in shock. She's always been such a healthy girl. She doesn't even have any allergies or lactose intolerance although her fraternal, non-celiac twin sister has. She's a very athletic competitive gymnast whose favorite foods are pasta, bagels, and take-out pizza.

We're meeting with a nutritionist on Tuesday to learn more about transitioning her to a gluten-free diet, and I just feel so sad for her. I'm very positive and upbeat around her, but my heart is breaking. She's about to enter 7th grade and has loved gluten all of her life. It's going to be a tough year!

Oh, that is a tough age to be diagnosed. As hard as it is with a 6 yr old, I'm sure its more of a heartache for a 7th grader. Let us know how she makes out. I'll be thinking of you and of your daughter. Emily

[Benshell]

My now 7 yr old was diagnosed a year ago at age 6 was also almost completely asymptomatic..just a few tummy aches and no one in the family has celiac, so it came as a complete shock when the blood work came back positive. We decided to skip the endoscopy and just try the gluten free diet and then recheck her bloods - which 6 mos later were completely normal...that was proof enough for us and the dr.

We never cried over what she can no longer eat...we've turned the whole thing into such a positive experience that my daughter has wonderful self esteem. Instead of being said that she "can't eat that", she says "I eat healthier than all my friends". Your kid will feed (not literally) off of you...so if you are depressed and sad, they will be too. If you make it a positive experience, they will feel the same.

For us, I threw myself into cookbooks, support groups, talking to people here, local health food shops, dieticians to gain as much info as possible about food. I've turned my regular favorite recipes gluten free for the whole family - ribs, meatloaf, fried chicken fingers, pancakes and NO ONE can tell the difference. WE just had her b-day and the kids loved the gluten-free cupcakes, couldn't tell (all betty crocker gluten-free mix). Being that our kids are the same age I would LOVE to give you a ton of ideas about food that yours make like so feel free to email me direct.

Most important is to STAY POSITIVE. WHile I can understand the persons point of view feeling like it was a miscarraige, I felt it as a blessing..our whole family is eating much healthier now...less carbs (so we've lost weight), no more fast food and we spend time together food shopping and cooking. It's really been great for us that she had to go gluten free.

Good luck and feel free to send me a message direct.

Michele

[Pheebers]

Michele,

It's great to hear how well it has worked out for you. Personally, as I'm new to this, I could always use some tips on gluten-free cooking.... I made a roux last night with gluten-free flour instead of the usual AP and the sauce was denser and gummy, not at all creamy as usual. For my daughter's sake everyone pretended they didn't notice, and she didn't complain at all, but I could see she was disappointed. I didn't make a big deal of it and mentioned that I'll be learning a lot in the upcoming months, but I wonder what I did wrong. I bought the flour that supposedly can be used straight as a substitute, ($10+ for a small bag, grrr) but with the gluten-free things I have tried so far I don't believe anyone who says they can't tell the difference!

We've always eaten healthily (eg lots of vegetables, lean protein, very few chips/fried foods, whole grains instead of white, etc) so this isn't a "step up" for us diet-wise. She has always eaten better than her friends, so unfortunately that's not a selling point to her.

I've never had an even slightly negative attitude around my daughter, and I don't get the impression that the OP does either. In my case, at least, what I'm worried about is the social aspect. I've heard of kids who have been excluded from parties because the birthday child's parents thought it would be kinder, or were excluded from playdates/sleepovers because the parents were uncomfortable with the food situation.

I'm casually spreading the word that my daughter knows what she can eat, knows what questions to ask if necessary, and that people don't have to make any special accomodations for her at their houses -- she'll pack some food just in case. I've bought gluten-free cookies for her to share with her friends. I'm doing a lot of research and trying a lot of recommendations, but somehow I still feel sad about it, as if my genes and I have failed my daughter.

[bbuster]

Michele,

It's great to hear how well it has worked out for you. Personally, as I'm new to this, I could always use some tips on gluten-free cooking.... I made a roux last night with gluten-free flour instead of the usual AP and the sauce was denser and gummy, not at all creamy as usual. For my daughter's sake everyone pretended they didn't notice, and she didn't complain at all, but I could see she was disappointed. I didn't make a big deal of it and mentioned that I'll be learning a lot in the upcoming months, but I wonder what I did wrong. I bought the flour that supposedly can be used straight as a substitute, ($10+ for a small bag, grrr) but with the gluten-free things I have tried so far I don't believe anyone who says they can't tell the difference!

Gluten-free cooking is a whole new world - tastes and textures can be dramatically different. Unfortunately, it takes a fair amount of trial and error - I don't think there is a universal "bible" on the subject, because people's tastes are different. For example, some people love the bean based flours, and like the texture it brings to bread, but everyone in our family thinks it tastes terrible (one of the few things I threw in the garbage). I do buy bean flour, but add a tiny bit (like 1 tsp to 2 or more cups other flour) when I make bread. Soy flour can also have a really strong taste, especially as it gets old.

So keep trying and you'll find what you like. Personally, I am a big fan of Bette Hagman's cookbook/recipes, especially The Gluten-Free Gourmet Bakes Bread - has a great into section about different flours and such.

[Pheebers]

Gluten-free cooking is a whole new world - tastes and textures can be dramatically different. Unfortunately, it takes a fair amount of trial and error - I don't think there is a universal "bible" on the subject, because people's tastes are different. For example, some people love the bean based flours, and like the texture it brings to bread, but everyone in our family thinks it tastes terrible (one of the few things I threw in the garbage). I do buy bean flour, but add a tiny bit (like 1 tsp to 2 or more cups other flour) when I make bread. Soy flour can also have a really strong taste, especially as it gets old.

So keep trying and you'll find what you like. Personally, I am a big fan of Bette Hagman's cookbook/recipes, especially The Gluten-Free Gourmet Bakes Bread - has a great into section about different flours and such.

Thanks so much. I'll look for Bette Hagman recipes!