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14 Year Old Son Newly Diagnosed


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#1 Iansmom

 
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Posted 09 June 2011 - 12:39 PM

Hi all, I'm glad I found this board. My 14 year old son was diagnosed via bioposy (blood tests neg) with celiac. He has been gluten free since then and has not had ANY GI or fatigue symptoms! He has had depression, anxiety, ADHD and short stature (3rd percentile in height) for years. Don't see any improvement yet in behavior. So my questions are - how many of you have seen catch up growth in your children? And what about psychological symptoms reduction? Thanks!
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#2 Pheebers

 
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Posted 09 June 2011 - 01:03 PM

My 13 year old daughter was diagnosed via blood work (and confirmed via biopsy) in August. We started a gluten-free diet right away.

She rarely had any stomach problems, but was tested because of short stature - under 1st percentile. She had grown less than a centimeter by October (2 months) but had grown 4 cm and 2 lbs by her March checkup (7 months on the gluten-free diet). The doctors are very happy with her progress. I was very small as a child but am now average height, so her height wasn't a red flag until her growth curve suddenly flattened.

You didn't say how long your son has been on a gluten-free diet, but I'm sure it takes some time for the intestines to heal and be able to properly absorb nutrients. I can't speak to improvement of psychological symptoms, because she didn't have any before switching, although it has occasionally been hard for her on her new diet.
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#3 Iansmom

 
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Posted 09 June 2011 - 01:44 PM

My 13 year old daughter was diagnosed via blood work (and confirmed via biopsy) in August. We started a gluten-free diet right away.

She rarely had any stomach problems, but was tested because of short stature - under 1st percentile. She had grown less than a centimeter by October (2 months) but had grown 4 cm and 2 lbs by her March checkup (7 months on the gluten-free diet). The doctors are very happy with her progress. I was very small as a child but am now average height, so her height wasn't a red flag until her growth curve suddenly flattened.

You didn't say how long your son has been on a gluten-free diet, but I'm sure it takes some time for the intestines to heal and be able to properly absorb nutrients. I can't speak to improvement of psychological symptoms, because she didn't have any before switching, although it has occasionally been hard for her on her new diet.


Wow, that's pretty substantial growth for your daughter. My son has been glueten-free diet for two weeks now. I am really looking forward to him growing. He starts high school in the fall and he looks like a baby compared to the kids there!
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#4 cyberprof

 
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Posted 09 June 2011 - 02:31 PM

Hi all, I'm glad I found this board. My 14 year old son was diagnosed via bioposy (blood tests neg) with celiac. He has been gluten free since then and has not had ANY GI or fatigue symptoms! He has had depression, anxiety, ADHD and short stature (3rd percentile in height) for years. Don't see any improvement yet in behavior. So my questions are - how many of you have seen catch up growth in your children? And what about psychological symptoms reduction? Thanks!

Ian's mom, welcome to the board.

My son was 14 when I was diagnosed and it took about six months for the light-bulb to go off for me (duh!) and have him tested. He was 5'2" and always seemed less "hardy" than the rest of the family. Sick a lot, tummy problems, low energy. (When he was 13 I asked the doctor to test for anything/everything -cancer, diabetes, thyroid etc., but it was all negative. No celiac test.)

The real kicker was that at 15 he was at pre-puberty and had a level of zero testosterone, which means not in puberty. (Shhh...he hates that I tell this story.) As a freshman, he was playing soccer against kids who looked like men and he hated being small. His bone age was 12.5 and he was also about 3rd percentile for height and 25th percentile for weight after being 75th for all of childhood.

The docs did the blood work and it was negative and my DH vetoed the endoscopy, stating that DS should just go gluten-free. DS didn't want to go gluten-free without proof so we had his genes tested and DS agreed that if he was positive he would go gluten-free. He was positive and went gluten-free and dairy free in 2008.

He is now 18, 6'2" or so and still growing, size 11.5 feet. So ~11 inches in three years. He follows the gluten-free diet pretty well and doesn't cheat but he's not as careful as I am. (For example, he'll eat Taco del Mar or Chipotle burrito bowls, which can have CC.)

He is happier and didn't have diagnosed depression before but may have been borderline.

Did you have him tested for Vit D, B, Calcium, Iron deficiencies? Definitely do that. What about bone age? Did they test that? Most likely, since you caught it before late teenage his bone plates are still immature, which means growth is still possible.

Is your son dairy-free too? You might want to try that too, at least in the beginning. The docs say that adult take about 2 years to heal their intestines, but kids take 6-9 months.

Also, I read lots of medical literature about delayed growth and several studies showed that supplementing with Vit D was essential to growth and that it was as good as growth hormone. So we had DS on Cod Liver Oil (Capsuls from Carlson's) and a multivitamin and fortified OJ. Some folks even have to have prescription Vit D supplements, with celiac damage.

Good luck to you. I hope your son has good results and gets really healthy. Ask if you have more questions.

Height is not everything, but DS got revenge on his pediatrician...DS is about 7 inches taller than the doc, who said he was just destined to be short.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#5 Iansmom

 
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Posted 09 June 2011 - 04:23 PM

Ian's mom, welcome to the board.

My son was 14 when I was diagnosed and it took about six months for the light-bulb to go off for me (duh!) and have him tested. He was 5'2" and always seemed less "hardy" than the rest of the family. Sick a lot, tummy problems, low energy. (When he was 13 I asked the doctor to test for anything/everything -cancer, diabetes, thyroid etc., but it was all negative. No celiac test.)

The real kicker was that at 15 he was at pre-puberty and had a level of zero testosterone, which means not in puberty. (Shhh...he hates that I tell this story.) As a freshman, he was playing soccer against kids who looked like men and he hated being small. His bone age was 12.5 and he was also about 3rd percentile for height and 25th percentile for weight after being 75th for all of childhood.

The docs did the blood work and it was negative and my DH vetoed the endoscopy, stating that DS should just go gluten-free. DS didn't want to go gluten-free without proof so we had his genes tested and DS agreed that if he was positive he would go gluten-free. He was positive and went gluten-free and dairy free in 2008.

He is now 18, 6'2" or so and still growing, size 11.5 feet. So ~11 inches in three years. He follows the gluten-free diet pretty well and doesn't cheat but he's not as careful as I am. (For example, he'll eat Taco del Mar or Chipotle burrito bowls, which can have CC.)

He is happier and didn't have diagnosed depression before but may have been borderline.

Did you have him tested for Vit D, B, Calcium, Iron deficiencies? Definitely do that. What about bone age? Did they test that? Most likely, since you caught it before late teenage his bone plates are still immature, which means growth is still possible.

Is your son dairy-free too? You might want to try that too, at least in the beginning. The docs say that adult take about 2 years to heal their intestines, but kids take 6-9 months.

Also, I read lots of medical literature about delayed growth and several studies showed that supplementing with Vit D was essential to growth and that it was as good as growth hormone. So we had DS on Cod Liver Oil (Capsuls from Carlson's) and a multivitamin and fortified OJ. Some folks even have to have prescription Vit D supplements, with celiac damage.

Good luck to you. I hope your son has good results and gets really healthy. Ask if you have more questions.

Height is not everything, but DS got revenge on his pediatrician...DS is about 7 inches taller than the doc, who said he was just destined to be short.



Thanks so much for sharing your story. I love your son's story. Being so new to this it's really helpful to hear from others who are further down the road. Yes, bone age was tested and he was 12.6 bone age/14.4 chronological age.

The most amazing thing to me is the almost immediate lifting of fatigue since he's gone gluten-free (2 weeks now). He used to go through bouts of sitting on the couch, pale, unable to move. He has not had one of those episodes since. But I know the damage has been done and I'm beating up on myself for not pushing harder/sooner for a diagnosis.
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#6 cyberprof

 
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Posted 09 June 2011 - 07:09 PM

Thanks so much for sharing your story. I love your son's story. Being so new to this it's really helpful to hear from others who are further down the road. Yes, bone age was tested and he was 12.6 bone age/14.4 chronological age.

The most amazing thing to me is the almost immediate lifting of fatigue since he's gone gluten-free (2 weeks now). He used to go through bouts of sitting on the couch, pale, unable to move. He has not had one of those episodes since. But I know the damage has been done and I'm beating up on myself for not pushing harder/sooner for a diagnosis.


Don't beat yourself up - you're doing great.

Our sons sound like twins - they were the same age/bone age/3rd percentile height. My son weighed 92 pounds when he was 12 and 96 when he was 15. When I told the docs he wasn't growing they said - "he gained four pounds"! Like that was ok. Most teenagers are through with puberty by 16 and he hadn't even started at 15.5 so that was crummy. And then the docs telling me that he didn't need to be gluten-free because his blood test was negative. Grrr...still makes me mad.

The thing that was the worst was that after he went gluten-free, I asked him if he felt different (I didn't want to ask leading questions) and he said no but... "I didn't know that eating wasn't supposed to hurt." That still makes me cry, even three years later. No wonder he was a crabby child.

Anyway, this forum is great for asking questions so be sure to ask if you have more.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#7 bbuster

 
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Posted 09 June 2011 - 08:08 PM

It could easily take a few months to really get all of the gluten out of his system. The gluten-free diet is overwhelming in the beginning - so much to learn. There will be little slip-ups here and there as you learn, and don't beat yourself up - it happens to everyone. Just try to stay positive and look forward, not backward. Every slip-up is just a learning experience, so you will be that much better going forward.

There is so much information everywhere, and some of it is conflicting, but just sort through it the best you can and you will figure it out. And yes, this board is a great source of everything!

Kids, especially in the teen years, desperately want to fit in and be like everyone else. It is hard to be different. But as you go through the process, you will figure out ways to make gluten-free as normal as possible, and it will help both of you cope.

Best of luck to you, just take it a day at a time and you will manage just fine. Remember you are not alone - you are among friends here.
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Bev

Mom of Garrett - Mizzou freshman; diagnosed Jan 2005

#8 T.H.

 
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Posted 09 June 2011 - 10:47 PM

I can only speak to the psychological symptoms for my daughter, who was diagnosed at age 11. She suffered from depression as well, and it disappeared on the diet, although I think it took a few weeks, maybe even 2 months. She not only got rid of the depression, she became so much less anxious and more outgoing and her emotions...hmmm, I guess I'd say it was like suddenly all the rough edges of her emotions smoothed out significantly. She's still a pretty emotional kid, but compared to what she used to be like? It's a HUGE difference.

There was one important thing with my daughter, though, that might apply. The depression went away, big-time, like I said, but now if she gets accidental gluten contamination? Her depression hits her hard and fast and MUCH worse.

Usually within 12-24 hours after she gets gluten contamination now, she has a massive anxiety attack where she breaks down into irrational hysterics for a few hours in a row. She can't think, she can't process anything, and she spirals into this dark depression where everything is horrible, useless, and hopeless in a matter of minutes.

We're looking at getting a psychologist who can give her some coping mechanisms possibly for when this happens, but I don't know if anything CAN help, since it's so physiological rather than simply mental, you know?


And it's really clear how physical it is because it only lasts a few hours, then she gets some equilibrium back. We usually have 1-2 more attacks over the next 24-36 hours, less intensity and shorter period of time, and then it's just gone. She goes back to normal, no anxiety and depression attacks.

But schooling, sport participation, heck, even going out on errands is pretty much impossible when she gets hit with gluten like this.

I honestly don't know how common this is for those of us who have gluten-induced depression, but I mention it just as something to keep an eye out for. It may also be something you'll need to discuss with the school, potentially, you know?


Shauna
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Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#9 cyberprof

 
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Posted 09 June 2011 - 11:16 PM

... she has a massive anxiety attack where she breaks down into irrational hysterics for a few hours in a row. She can't think, she can't process anything, and she spirals into this dark depression where everything is horrible, useless, and hopeless in a matter of minutes...

Shauna

This was me throughout my 20s. I thought it was just immaturity/lifestyle. Interesting.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#10 Mummyto3

 
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Posted 10 June 2011 - 02:07 AM

My 9yr old daughter has recently been diagnosed as Celiac. Bowel probs run in my family so I will be getting tested too. I'm constantly tired and was diagnosed with thryroid probs last year. My daughter doesn't have the shortness. She is tall and very skinny. I checked her BMI for kids and seems normal although she looks underweight. She's always irritable, moody and very emotional. She's had urine infections for 5 yrs and since Dec last year, constipation with soiling. No amount of laxatives worked, and enema didn't do much. She's due a biopsy but her tTG test came back as pos (128).

Welcome to the board (I'm new too x)
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Work like you don't need the money, love like you've never been hurt and dance like no one is watching.

#11 Iansmom

 
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Posted 10 June 2011 - 12:37 PM

Thanks for the welcome! I'll be checking on these forums frequently and hopefully get to know you all.

Lisa
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