Celiac Disease in kiddos - symptoms, signs

[abrightmom]

We have a doctor appointment coming up but I'm intensely curious about others' experiences with their children who have been diagnosed with Celiac.

 

DS7 (almost 8) seems to spend more time in the bathroom than out. He has more BMs than anyone I've ever known and he often has diarrhea. Some days he goes p**p 10 or 12 times and he sits on the toilet for 30ish minutes. This has been ongoing for about a year. He has gas :D. He has greasy stool (doctor says this is a problem metabolizing fat - I think this is a big problem but he didn't think much of it:confused:). He has aching limbs/joints off and on (has coincided with these bowel challenges). He has a history of food allergies although never tested positive for an allergy to wheat (I *think* we included this but it's been a few years since the testing).

 

Thoughts? Did your child have these issues?

 

I'm just looking for something to go on while awaiting the appointment. I also want to know what to push for in the doctor's office so we maximize the time/money spent to even go to the doctor. I suspect Celiac but only because my Mom suggested it after we discussed the issues. She has more knowledge on this subject and so I value her suspicions.

 

This poor kid . . .

[bettyandbob]

Get one of Danna Korn's books from the library. Most of her books have lists of symptoms typical in adults and lists of symptoms typical in children. Photocopy the lists, check off what you've seen and when. In addition to what you are seeing now there may be a symptom that your child had/has which doesn't seem as big a deal now. Besides the obvious diarrhea issues there are wide ranging symptoms--anemia, head aches, constipation, vitamin deficiency, attention problems, siezures. Note all the symptoms you see in this child and in any other family member. This is what I did. It helped me, but I still had to push hard for testing. My dd was dx 8.5 years ago.

[abrightmom]

Betty,

 

Thank-you. I just reserved a few. What a great place to start! It will help to prepare me for the doctor appointment. :001_smile:

[juelle]

The mal-absorption/poor digestion may be due to enzyme deficiencies. Treatment with digestive enzymes could make all the difference for your ds.

 

I'm sorry that I don't know what tests to ask for, but my sister does. I have a call in, and she's on these boards. Maybe you'll hear from her before I do!

 

I've dealt with the issues your ds has, and I just cut out gluten, soy and dairy. It helps, but the digestive enzymes are necessary, too.

 

A hallmark of celiac in kids is very slow or 'stunted' growth, because they're not absorbing nutrients from the food they eat. But that's not the only sign. I hope you find the answers you need.:grouphug:

[athena1277]

That certainly sounds like it could be celiac disease. My dd was diagnosed just before she turned 2. She is what they call a "classic celiac". She had a bloated tummy and whenever she pooped (in a diaper), I had to mop the floor. :ack2:

 

Also, just because he did not test postive for a wheat allergy, does not mean he does not have CD. CD is a gluten (wheat, rye, barley, oats) intolerance, not an allergy. An allergy is a histamine reaction, whereas CD is an autoimmune reaction.

[coffeefreak]

I would strongly suspect Celiac too. Celiac children often test allergic to everything OR allergic to nothing. It's very bizarre. They're failure to thrive doesn't always appear in their growth. Sometimes it's their teeth rotting, and sometimes it's not apparent at all.

 

I would check out Celiac, Soy and Milk.

 

Blessings!

Dorinda

[Raini]

Probably not his issue, but my dd's doctor was stumped with her issues until we went on vacation and left her omega 3 gummies behind. Her symptoms cleared up. Chia seeds (Salvia hispanica) were the problem. Sorbitol (in sugar free gum) will also give her terrible symptoms.

 

Just in case it's that simple....

[Gooblink]

The symptoms you describe certainly can be signs of celiac. My son was diagnosed about 4 years ago after a routine blood test (he's diabetic) showed a high tTG marker.

 

He was showing no signs of being celiac - at all. Normal stools, no stomach pain...nada. The gastroenterologist suggested a biopsy of the small intestine, which came back positive.

 

Even now, 4 years later, if he sneaks a bit of gluten in his diet, he shows no sign of his intolerance. Frankly, I sometimes wonder if the diagnosis is incorrect.

 

Both a cousin of mine and my aunt were sick to the point of severe malnutrition before being accurately diagnosed. My aunt actually never recovered from the harm done to her body, and died about a year after her diagnosis.

 

My sister had the same symptoms you describe with your son, but hers turned out to be IBS and is treated with medication. Hers had nothing to do with gluten.

 

I believe there is a blood test that will diagnose celiac...but when my son was being tested, a biopsy was the only accurate method.

 

I hope you get answers. :) Celiac is not so hard to live with, once you get used to avoiding gluten (gotta read labels, it's in just about anything that's processed). There are more and more gluten free options coming available, though. It's also more expensive - bread and pasta are treats for us, rather than staples.

[coffeefreak]

The symptoms you describe certainly can be signs of celiac. My son was diagnosed about 4 years ago after a routine blood test (he's diabetic) showed a high tTG marker.

 

He was showing no signs of being celiac - at all. Normal stools, no stomach pain...nada. The gastroenterologist suggested a biopsy of the small intestine, which came back positive.

 

Even now, 4 years later, if he sneaks a bit of gluten in his diet, he shows no sign of his intolerance. Frankly, I sometimes wonder if the diagnosis is incorrect.

 

Both a cousin of mine and my aunt were sick to the point of severe malnutrition before being accurately diagnosed. My aunt actually never recovered from the harm done to her body, and died about a year after her diagnosis.

 

My sister had the same symptoms you describe with your son, but hers turned out to be IBS and is treated with medication. Hers had nothing to do with gluten.

 

I believe there is a blood test that will diagnose celiac...but when my son was being tested, a biopsy was the only accurate method.

 

I hope you get answers. :) Celiac is not so hard to live with, once you get used to avoiding gluten (gotta read labels, it's in just about anything that's processed). There are more and more gluten free options coming available, though. It's also more expensive - bread and pasta are treats for us, rather than staples.

 

Cindy,

From what I understand, the biopsy is 100% accurate. Your son is blessed that they caught it early. My uncle lived his whole life not knowing and having a "sensitive stomach" as he got older. When he was in his 30s, he almost died because of the disease, and cannot even have food that has been prepared with food that has gluten in it. His daughter was diagnosed with it when she was 10 and would occasionally sneak food with gluten. As she's gotten older she's been more affected by the disease and does not EVER sneak anymore. Right now, your son's villi are working, the more gluten he eats, the more damaged they will become and then he not only won't be able to tolerate gluten AT ALL, but he'll have other problems as well.

 

HTH!

Dorinda

[abrightmom]

Ladies,

 

This may sound ridiculous . . .

 

but do things like

 

- moodiness/irritability

-unpredictability (cheerful/happy go lucky one day and threatening to jump out a window the next)

- spaciness/disconnectedness

- being all over the map with behavior/mood/how he feels

 

go along with Celiac?

[sleepymommy]

You've already got a lot of good advice. I'll just throw in that in order for the blood test or the biopsy to be even somewhat accurate your son must be currently eating gluten.

 

For the biopsy (which is considered the gold standard), it is usually accurate, but can also be false negative if the parts of the intestine that were biopsied (sp?) were not yet damaged.

 

My son is not diagnosed celiac, we had taken him off of gluten as a trial and he changed so much for the better that we so no need to torture him by putting him back on it for the tests.

 

His symptoms were:

uncontrollable sobbing or tantrums

loose stool, several times a day

dark circles under his eyes

intense itching to the point of blood every single night

and eventually failure to thrive

[sleepymommy]

Ladies,

 

This may sound ridiculous . . .

 

but do things like

 

- moodiness/irritability

-unpredictability (cheerful/happy go lucky one day and threatening to jump out a window the next)

- spaciness/disconnectedness

- being all over the map with behavior/mood/how he feels

 

go along with Celiac?

 

Not ridiculous at all! Yes these can go along with celiac or even just gluten intolerance. Many times gluten intolerance goes hand in hand with dairy intolerance too and these same symptoms can occur with dairy.

[grace'smom]

These can also be signs of lactose intolerance. Also, antibiotics can deplete the good bacteria in your gut, causing issues as well.

[Gooblink]

Cindy,

From what I understand, the biopsy is 100% accurate. Your son is blessed that they caught it early. My uncle lived his whole life not knowing and having a "sensitive stomach" as he got older. When he was in his 30s, he almost died because of the disease, and cannot even have food that has been prepared with food that has gluten in it. His daughter was diagnosed with it when she was 10 and would occasionally sneak food with gluten. As she's gotten older she's been more affected by the disease and does not EVER sneak anymore. Right now, your son's villi are working, the more gluten he eats, the more damaged they will become and then he not only won't be able to tolerate gluten AT ALL, but he'll have other problems as well.

 

HTH!

Dorinda

 

I just wanted to pop back and say "thank you" for this. It's easy to become complacent when we're symptom free. This is a good reminder why I need to stay vigilant, for my ds.

 

I appreciate the reminder. :001_smile:

[Jenny in Atl]

My youngest was dx at 3 (had all the signs, and is also Type-1 diabetic) Her sister was tested after Fi's dx, and was also positive for Celiac. Mac was asymptomatic at the time. Looking back, she did have, from time-to-time gassy tummy aches every so often, and some learning issues (now gone).

 

What's funny is that Fi has become less sensitive (if we have cross contamination) over the last seven years, while Mac has become more sensitive. Given all that could happen later in life, we work very hard to keep both GF.

[tissakay]

We've decided that they both do have celiac. We did not test, but put them on a gluten free diet instead. I saw improvement in their symptoms in just a few weeks.

 

Both DD's had ALL of the symptoms you list above. Most of thier joint pain were in their feet and legs. That stopped, too, when I removed gluten.

 

Gluten is in wheat, barley, and rye. You have to read labels very carefully.

 

Tonja

[tissakay]

What's funny is that Fi has become less sensitive (if we have cross contamination) over the last seven years, while Mac has become more sensitive. Given all that could happen later in life, we work very hard to keep both GF.

 

I've read that often there is a "honeymoon" type period duing puberty where the symptoms will kind of go away. But, that it doesn't mean that the celiac goes away. I have a 13 year old that has a gluten allergy and it has seemed to lesson some over the past year.

[AnneGabe]

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Edited September 6, 2023 by AnneGabe
privacy

[lwilliams1922]

Does anyone have any expierence with stool testing like www.enterolab.com?

 

 

I think I along with my 3 girls (3,5 and 14) have wheat issues.

 

I only have a BM once a week (soft not loose though) and I'm always bloated along with ADHD. Went on an elimination diet for 9 months and felt soooooo much better.

 

 

 

DD/5 5% percentile for weight. possible ADHD, not sure. It takes her up to 2 hours to fall asleep. Wiggles, crying, running, talking, jumping, till she finally goes to sleep. Within 5 days of an elimination diet she started falling asleep within 5-10 mins.

 

DD/3 bed wetter. I think she may have a wheat AND a yeast issue. When I removed wheat AND high carb food the bed wetting stops.

 

DD/14 ADHD cheats on the elimination diet. so I can't see changes.

 

I recently had a blood test come back negative. I didn't read till after the fact that my diet could have affected results. I was off wheat for most of the past year.

 

 

I would like to get a test to tell me I'm on the right track. does anyone have any suggestions? I THINK the stool test is the right way to go but it has to be paid for out of pocket $500 for the 4 of us.

 

I don't think the dr would do the biopsy if the blood test was neg. Last time I talked to her she wanted to XRAY my stomach.

 

any other suggestions?

Edited September 15, 2010 by lwilliams1922
insert

[Caraway]

Does anyone have any expierence with stool testing like www.enterolab.com?

 

 

I think I along with my 3 girls (3,5 and 14) have wheat issues.

 

I only have a BM once a week (soft not loose though) and I'm always bloated along with ADHD. Went on an elimination diet for 9 months and felt soooooo much better.

 

 

 

DD/5 5% percentile for weight. possible ADHD, not sure. It takes her up to 2 hours to fall asleep. Wiggles, crying, running, talking, jumping, till she finally goes to sleep. Within 5 days of an elimination diet she started falling asleep within 5-10 mins.

 

DD/3 bed wetter. I think she may have a wheat AND a yeast issue. When I removed wheat AND high carb food the bed wetting stops.

 

DD/14 ADHD cheats on the elimination diet. so I can't see changes.

 

I recently had a blood test come back negative. I didn't read till after the fact that my diet could have affected results. I was off wheat for most of the past year.

 

 

I would like to get a test to tell me I'm on the right track. does anyone have any suggestions? I THINK the stool test is the right way to go but it has to be paid for out of pocket $500 for the 4 of us.

 

I don't think the dr would do the biopsy if the blood test was neg. Last time I talked to her she wanted to XRAY my stomach.

 

any other suggestions?

 

Honestly? I would put you all on a very strict elimination diet, and see who/what gets better. If you get better, than you know what you have to do... even if they test you and confirm something you are still going to have to change your diet. I would spend my time and $500 on some allergen free brownies. :tongue_smilie:

[lwilliams1922]

Honestly? I would put you all on a very strict elimination diet, and see who/what gets better. If you get better, than you know what you have to do... even if they test you and confirm something you are still going to have to change your diet. I would spend my time and $500 on some allergen free brownies. :tongue_smilie:

 

 

That is prob the better way to go. It's just hard, when other people catch wind of what your kids eat (or don't eat) it's easy to be looked at as the resident quack.

[sleepymommy]

Does anyone have any expierence with stool testing like www.enterolab.com?

 

 

I think I along with my 3 girls (3,5 and 14) have wheat issues.

 

I only have a BM once a week (soft not loose though) and I'm always bloated along with ADHD. Went on an elimination diet for 9 months and felt soooooo much better.

 

 

 

DD/5 5% percentile for weight. possible ADHD, not sure. It takes her up to 2 hours to fall asleep. Wiggles, crying, running, talking, jumping, till she finally goes to sleep. Within 5 days of an elimination diet she started falling asleep within 5-10 mins.

 

DD/3 bed wetter. I think she may have a wheat AND a yeast issue. When I removed wheat AND high carb food the bed wetting stops.

 

DD/14 ADHD cheats on the elimination diet. so I can't see changes.

 

I recently had a blood test come back negative. I didn't read till after the fact that my diet could have affected results. I was off wheat for most of the past year.

 

 

I would like to get a test to tell me I'm on the right track. does anyone have any suggestions? I THINK the stool test is the right way to go but it has to be paid for out of pocket $500 for the 4 of us.

 

I don't think the dr would do the biopsy if the blood test was neg. Last time I talked to her she wanted to XRAY my stomach.

 

any other suggestions?

 

Yes, I had ds6 and myself tested through Enterolabs. I am very pleased with them and am very happy we did the testing. Ds6 had already been off of gluten for a few months with good results prior to the testing. His results still showed gluten sensitivity (the numbers were still very high), it also informed us of his dairy, soy and egg sensitivities. While we suspected dairy too, we didn't realize just how badly his body was reacting. Once we eliminated the other sensitivities his issues (itching, tantrums, Failure to Thrive) all started getting even better.

 

I also really needed this test as more "proof" for dh. He was against such a restricted diet as he was very resistant to internalizing that ds6 (3yrs at the time) had anything wrong with him.

[Mama Geek]

The least expensive, most accurate way to determine if gluten is to remove it from your diet. My dh knew within days that he was feeling a lot better.

 

One other ingredient that you have to watch out for is food starch. There is some possibility that wheat will be the what they use for food starch.

[Snickerdoodle]

 

So, just wanted to say if it's not celiac disease (my son tested negative for that as well) it still could be a gluten or dairy intolerance/allergy. Try the elimination diet if you can't get any answers from doctors and specialists. Good luck, it's a rough road!

 

We were just told the same thing.

[k2bdeutmeyer]

I'm very curious about this for my DD as well. We're waiting on approval for insurance and then I plan to make an appt with a GI specialist.