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AnthonyinMaine

Celiac And Poor Growth

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We stopped at the Natural Living Center store today and bought some Carlson Chelated Iron (27 mg) and Cod Liver Oil (2000 IU Vitamin A & 400 IU Vitamin D each soft gel) supplements today. I assume that he should take 1 Iron tablet and 2 Cod Liver Oil soft gels each day? He already has some gluten-free multivitamins that he's taking each day.

We have some EAS 100% Whey Protein powder to make protein shakes. The label says that it also contains milk and soy ingredients, but it says that 100% of its protein comes from whey. Is the soy in this shake mix likely to generate any anti-testosterone effects? I've never heard about this from soy products, so I'm not sure what to make of it in the case of this type of shake powder?

The study that I posted the link to earlier said that they administered 6000 IU of Vit A per week and 12 mg of Iron per day. So your Carlson's looks pretty strong. Toxicity of Vitamin A for a child at your son's weight would occur at 67,500IU per day, according to Wikipedia, so you're still pretty low. But perhaps he should only take one softgel per day? My son took 1000 IU of vit A per day.

For the iron, that looks like an ok dose for his weight, unless there's a lot of iron in his multivitamin. Iron toxicity for his weight would be at around 45mg per day.

But I'm not a doctor, so maybe you should ask your PCP?

Regarding the soy, I was referring to soy protein taken in large doses: Small amounts of soy are used in things like chocolate and sauces and shouldn't be a problem (unless he is sensitive to soy). And I mispoke about the soy interaction with testosterone: It actually interacts with estrogen but that is why it is not good to have estrogen activated in a pubescent male. So the whey protein is suitable.


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

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The study that I posted the link to earlier said that they administered 6000 IU of Vit A per week and 12 mg of Iron per day. So your Carlson's looks pretty strong. Toxicity of Vitamin A for a child at your son's weight would occur at 67,500IU per day, according to Wikipedia, so you're still pretty low. But perhaps he should only take one softgel per day? My son took 1000 IU of vit A per day.

For the iron, that looks like an ok dose for his weight, unless there's a lot of iron in his multivitamin. Iron toxicity for his weight would be at around 45mg per day.

But I'm not a doctor, so maybe you should ask your PCP?

Regarding the soy, I was referring to soy protein taken in large doses: Small amounts of soy are used in things like chocolate and sauces and shouldn't be a problem (unless he is sensitive to soy). And I mispoke about the soy interaction with testosterone: It actually interacts with estrogen but that is why it is not good to have estrogen activated in a pubescent male. So the whey protein is suitable.

OK. His multivitamin doesn't have any iron in it, so I would think he'd be fine with the 27 mg dose each day. The recommended dosage on the bottle of cod liver oil is one to three soft gels per day, but it sounds as if one per day should be suitable, especially since he's already getting some A & D in his multivitamin. Thanks!

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OK. His multivitamin doesn't have any iron in it, so I would think he'd be fine with the 27 mg dose each day. The recommended dosage on the bottle of cod liver oil is one to three soft gels per day, but it sounds as if one per day should be suitable, especially since he's already getting some A & D in his multivitamin. Thanks!

Sounds good. The problem with celiac is that no one knows how each individual is reacting and how much is being absorbed, even during gluten-free recovery. What we tried to do is to supplement so that at least the minimum would be absorbed, because the premise is that during the gluten-ingesting period, not enough was absorbed. And the other premise is that puberty and the growth spurt won't occur if the body isn't getting adequate nutrition.

I'm surprised that your doc didn't test his iron level.


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

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Hi,

My son turned 15 years old this summer prior to starting his sophomore year in high school, and is much smaller than all of his classmates. He is currently about 5' 2" and weighs 104 pounds. We charted his growth from the age of 3. He was in the 80th percentile through age 6, dropped to the 50th percentile through age 9, and then continued to drop steadily to the point where he has been below the 5th percentile since age 13. All of his classmates have experienced their growth spurt and voice change, etc., but he appears to be about 11 or 12 years old. I am 6' 1" and 220 pounds, and my wife is 5' 6" and 120 pounds, so I would assume he would normally end up between 5' 10" and 6' 0"?

My son has been seeing a pediatric endocrinologist for the past 2+ years, given our concern for his delayed puberty. This doctor is apparently very conservative in nature, according to our PCP, and has not prescribed testosterone or any other hormone treatment. A blood test was given to my son a few months back by the endocrinologist, which resulted in a borderline positive result for Celiac disease (tissue transglutaminase was 20). His HLA type was also positive, and his IgG type deamidated gliadin antibodies came back positive at 6, so about 6 months ago, our Endo Dr. referred our son to a Gastrointestinologist, to check for Celiac or Crohn's symptoms through an esophagogastroduodenoscopy test. According to the Gastro Dr's report, his esophagus was normal, but in his stomach, he had some erythema in his antral area and in the duodenal bulb (duodenitis). The remainder of his duodenum and proximal jejunum were normal, and the villi appeared to be intact. Biopsies from the duodenal bulb showed total villous atrophy with lymphocytosis, from which the Gastro Dr. indicated that our son is exhibiting early (indicative) signs of Celiac disease, so we started him on a gluten-free diet 4 months ago. The Gastro Dr. believes that 6 months of the gluten-free diet will improve his growth pace, so our Endo Dr. has delayed use of any growth stimulants, which normally would have been initiated by now. My concern is that the longer we wait, the greater the chance that my son's growth window will close. Does anyone have any thoughts as to whether Celiac is likely to be the true cause of his delayed growth, especially since 4 months of a gluten-free diet has resulted in no increase in his physical development?

antony and you, the son, the 15yo boy...

i want to tell you a story: am 37, i have two boys, one 6yo, the younger 2yo...

this year, my 5 almost 6yo boy fractured his umerus during, believe!, a phisical activity at school. i runned to doctors... and im a doctor (am neurologist)... his growth chart was terrible: born with 25-30%, then declined do 10-15%, and this year achieved the 2,5% of percentil --- red flag...

we started our "journey" throught doctors: endocrinopeds, 2 docs, then gastroped...

diagnosis: short stature... GH deficiency? celiac disease? what else? my little boy had just 6y, just the short stature and some mild symptoms of stomach ache, some constipation, sometimes diarrhea, and nothing more. one of the endocrinoped --- which is here in brazil, the best endocrinopediatrician known, said to us: go to give him GH (growth hormone). he has gh deficiency or gh resistance... this doctor looked very rapdly to our exams, and to our son, gave to us some blood tests, and nothing more... I became crazy, whats is going on?

then, his ped gave to us a blood test TTG ab, and this came posotove, and the thing ended in a biopsy of duedenum, positive (mild abnormalities) to celiac, not so classic as your biopsy (atrophy vili)...

one thing: you may have celiac disease... this blood tests, the biopsy. quite sure (always i say, never say sure, never say never in medicine).

two: i know what you are thinking: i want to be taller, i (father and mother) do not want my child so small like this... thats what i thought during almost all this year, until i felt like other pals here said on this forum: let the nature acts... do your job (looking for medical help, go to good, techn good doctors, and with this professional -- trust in their expertise opinions... and do what they say to you to do.

and i say to you that GH treatment is very difficult to predict, if it will works or not... if you give GH during 4-8 yrs, you gain for about 4cm totally... will you be more or less man with 4cm more or not? think!!!???

i believe that your son will improve. his symptom is fundamentally short stature and puberty delay... this will improve...

if he has a bone age 2 yrs younger than his chronological age... 13 yrs, BE SURE THAT HE HAS MORE 3 TO 4 YEARS TO JUMP AND IMPROVE IN HEIGHT AND WEIGHT...

TAKE CARE. ANTONY, TRUST IN WHAT YOU BELIEVE. GIVE TO HIM (HER OR IT) ALL YOUR FAITH, SAY TO YOUR CHILD THAT HE IS SMART, INTELLIGENT, AND HE WILL BE A GOOD MAN, EVEN OF HE WILL BE SHORTER THAN THE OTHERS...

lets remember the good examples: EINSTEIN, TOM CRUISE, lionel messi (in fact, this soccer player has GH deficiency!!!), dustin hoffman, and many many others small-very successful men...

the main point: relax, do your job (nothing nothing with gluten)... and you will see...


36yo husband with probable celiac disease

== EMA and TTG: negative / no biopsy

== good response since GFD (nov/18/11)

6yo boy with probable celiac disease - since nov/18/11 on GFD

== negative EMA / positive TTG / positive Marsh I biopsy and negative HLA DQ2 and DQ8

my younger son = no symptoms at all

Myself = no symptoms at all

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Sounds good. The problem with celiac is that no one knows how each individual is reacting and how much is being absorbed, even during gluten-free recovery. What we tried to do is to supplement so that at least the minimum would be absorbed, because the premise is that during the gluten-ingesting period, not enough was absorbed. And the other premise is that puberty and the growth spurt won't occur if the body isn't getting adequate nutrition.

I'm surprised that your doc didn't test his iron level.

The doctor may have tested his iron level sometime over the past 2 years, but I may have lost track of it. We requested the medical records from our endocrinologist last week so that we can review the results of all the tests taken during that time. We received the records from the gastrointestinologist and have learned a great deal by reviewing the written records, so I'm anxious to see the endo records to better understand them as well.

One thing that I'd like to point out is that I am less concerned about my son's eventual height than I am about his lack of evidence of puberty at this stage in his life. I'm ok if he ends up being either 5'3" or 6'3", but when we start visiting colleges next year, I'd rather he not look like he's still in middle school. One thing I'm unclear about with celiac's impact is, putting the height/stature issue aside, can the puberty process itself be delayed, or missed altogether--more specifically, the physiological process of voice change, hair development, etc.? Upon his diagnosis with celiac this summer, I understood from what we were told that it would primarily impact his height & weight, due to lack of needed nutrients being absorbed to fuel the growth of added body mass, but would not necessarily impact these other signs of maturity such as voice change and hair development? I thought that these other changes were brought on by testosterone that the body itself generated, and were less dependent upon proper absorption of nutrients as is physical growth?

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The doctor may have tested his iron level sometime over the past 2 years, but I may have lost track of it. We requested the medical records from our endocrinologist last week so that we can review the results of all the tests taken during that time. We received the records from the gastrointestinologist and have learned a great deal by reviewing the written records, so I'm anxious to see the endo records to better understand them as well.

One thing that I'd like to point out is that I am less concerned about my son's eventual height than I am about his lack of evidence of puberty at this stage in his life. I'm ok if he ends up being either 5'3" or 6'3", but when we start visiting colleges next year, I'd rather he not look like he's still in middle school. One thing I'm unclear about with celiac's impact is, putting the height/stature issue aside, can the puberty process itself be delayed, or missed altogether--more specifically, the physiological process of voice change, hair development, etc.? Upon his diagnosis with celiac this summer, I understood from what we were told that it would primarily impact his height & weight, due to lack of needed nutrients being absorbed to fuel the growth of added body mass, but would not necessarily impact these other signs of maturity such as voice change and hair development? I thought that these other changes were brought on by testosterone that the body itself generated, and were less dependent upon proper absorption of nutrients as is physical growth?

Hmmm...interesting question. Putting aside height, as you said, when would puberty occur? Or would it be missed altogether? It looks like there are some conditions where it has never happened for some boys, mainly due to genetic diseases or pituitary diseases. I know celiac (or the resulting malnutrition) can definitely delay puberty but assumed it would happen sometime, but maybe only with supplementaion of hormones. From what I understand, testosterone fuels growth, and additional pounds fuels more testosterone but I'm not an expert. Sorry I can't be of help.

In my son's case, the zero testosterone at 15 (and gluten-free in March of that year) gave way to measurable testosterone by Christmas, and voice changes plus others by the one year mark even before he hit 120 pounds. He looked like he was 12 when he was 15 and by 16 he looked like he was 15. Still has a baby face but has muscles and facial hair (and would get mad at me for talking about it!).


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

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Hmmm...interesting question. Putting aside height, as you said, when would puberty occur? Or would it be missed altogether? It looks like there are some conditions where it has never happened for some boys, mainly due to genetic diseases or pituitary diseases. I know celiac (or the resulting malnutrition) can definitely delay puberty but assumed it would happen sometime, but maybe only with supplementaion of hormones. From what I understand, testosterone fuels growth, and additional pounds fuels more testosterone but I'm not an expert. Sorry I can't be of help.

In my son's case, the zero testosterone at 15 (and gluten-free in March of that year) gave way to measurable testosterone by Christmas, and voice changes plus others by the one year mark even before he hit 120 pounds. He looked like he was 12 when he was 15 and by 16 he looked like he was 15. Still has a baby face but has muscles and facial hair (and would get mad at me for talking about it!).

anthony, i recommend that you go to see the endocrino dr., if possible someone with expertise in delayed puberty and all its causes, including celiac disease. Because i do not know if this - your case is a case where i will be necessary a reposition of hormones (maybe im talking some boos$#&... i do not know...)...

Take care. Mara


36yo husband with probable celiac disease

== EMA and TTG: negative / no biopsy

== good response since GFD (nov/18/11)

6yo boy with probable celiac disease - since nov/18/11 on GFD

== negative EMA / positive TTG / positive Marsh I biopsy and negative HLA DQ2 and DQ8

my younger son = no symptoms at all

Myself = no symptoms at all

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anthony, i recommend that you go to see the endocrino dr., if possible someone with expertise in delayed puberty and all its causes, including celiac disease. Because i do not know if this - your case is a case where i will be necessary a reposition of hormones (maybe im talking some boos$#&... i do not know...)...

Take care. Mara

Thanks Mara. We have an appointment next week with a new endocrino dr. in Boston who also has experience in puberty issues. Hopefully we'll get some valuable guidance from him on this.

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Anthony, after my DD tested positive I had my 16 yo son tested too and voila! he has antibodies as well & so he is gluten-free too. Both DD & DS went gluten-free in jun 11. But he had already reached the puberty milestones, His voice chged around 14 1/2 & he had a growth spurt & he started shaving chin hairs when he was 15 & now @ age 17 can grow a beard (still a little patchy tho) So he apparently had celiac for who knows how long- nvr any symptoms (well his mild autism cld be a symptom) He's grown another 1 1/2 in since he was 16 He is 5'6 & 118 lbs. I do hope he squeaks out another inch or two but who knows? So I think puberty will take place with your boy as it did mine. You are btr off than we were as you know about his celiac & we didn't know about my DS. Like I said b4 since ur DS's feet have grown & that is a strong sign his body will follow.

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Hmmm...interesting question. Putting aside height, as you said, when would puberty occur? Or would it be missed altogether? It looks like there are some conditions where it has never happened for some boys, mainly due to genetic diseases or pituitary diseases. I know celiac (or the resulting malnutrition) can definitely delay puberty but assumed it would happen sometime, but maybe only with supplementaion of hormones. From what I understand, testosterone fuels growth, and additional pounds fuels more testosterone but I'm not an expert. Sorry I can't be of help.

In my son's case, the zero testosterone at 15 (and gluten-free in March of that year) gave way to measurable testosterone by Christmas, and voice changes plus others by the one year mark even before he hit 120 pounds. He looked like he was 12 when he was 15 and by 16 he looked like he was 15. Still has a baby face but has muscles and facial hair (and would get mad at me for talking about it!).

We finally received the medical records from our endocrinologist today. My son's total testosterone level at his last test, which was in May of this year, was 19 ng/dL. The normal range for boys in this age group is from 33-585 ng/dL, so it appears to me that my son's level is lower than what it should be. Also, my son's Luteinizing Hormone level was <1.0 mlU/mL, when the normal range is from 4.0 to 12.0. Lastly, his Prolactin level was 2.9 ng/mL, while the normal range is from 4.0 to 15.2. I don't pretend to know what these measurements all mean, but it appears to me that my son's body is certainly not producing the way it should be. I'll be sharing this information with the endocrinologist that we'll meet with next week. Hopefully he'll be able to make some sense of these results.

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We finally received the medical records from our endocrinologist today. My son's total testosterone level at his last test, which was in May of this year, was 19 ng/dL. The normal range for boys in this age group is from 33-585 ng/dL, so it appears to me that my son's level is lower than what it should be. Also, my son's Luteinizing Hormone level was <1.0 mlU/mL, when the normal range is from 4.0 to 12.0. Lastly, his Prolactin level was 2.9 ng/mL, while the normal range is from 4.0 to 15.2. I don't pretend to know what these measurements all mean, but it appears to me that my son's body is certainly not producing the way it should be. I'll be sharing this information with the endocrinologist that we'll meet with next week. Hopefully he'll be able to make some sense of these results.

anthony, its very important those results, the hormones, and if you have other blood samples before (like a laboratorial evolution, you can do this very easily of an excel chart... ) to see how this evoluted over the time... im just brainstorming here, you know... all those hormones are lower. No doubt. do your son have a MRI of the brain? (magnetic resonance imaging - MRI)


36yo husband with probable celiac disease

== EMA and TTG: negative / no biopsy

== good response since GFD (nov/18/11)

6yo boy with probable celiac disease - since nov/18/11 on GFD

== negative EMA / positive TTG / positive Marsh I biopsy and negative HLA DQ2 and DQ8

my younger son = no symptoms at all

Myself = no symptoms at all

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anthony, its very important those results, the hormones, and if you have other blood samples before (like a laboratorial evolution, you can do this very easily of an excel chart... ) to see how this evoluted over the time... im just brainstorming here, you know... all those hormones are lower. No doubt. do your son have a MRI of the brain? (magnetic resonance imaging - MRI)

They have not taken an MRI of his brain. I'm not sure if his low hormone levels are a direct result of celiac, or if they are caused by something else and his celiac condition is just another factor that he has to deal with? I can understand now why his other endo doctor said she was "baffled" by his case!

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Anthony,please (if you don't mind) report back after the endo visit. I'm curious what he has to say and what he thinks of the VitA/Iron supplementation. Are you going to show him the study on vitamin supplement?

If you reply to this thread we'll get notified. Good luck!


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

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Anthony,please (if you don't mind) report back after the endo visit. I'm curious what he has to say and what he thinks of the VitA/Iron supplementation. Are you going to show him the study on vitamin supplement?

If you reply to this thread we'll get notified. Good luck!

I will report back after our endo visit, and I do plan to discuss supplements with him. Thanks!

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I will report back after our endo visit, and I do plan to discuss supplements with him. Thanks!

anthony, i studied a little about your sons case... there is a thing called Hypogonadotropic hypogonadism... which leads to delayed puberty and low hormones, including what u have mentioned...

please, go to internet to study / to read about this and to see if there are some aspects about your boy.

i just want to help. good luck all you. take care.

mara


36yo husband with probable celiac disease

== EMA and TTG: negative / no biopsy

== good response since GFD (nov/18/11)

6yo boy with probable celiac disease - since nov/18/11 on GFD

== negative EMA / positive TTG / positive Marsh I biopsy and negative HLA DQ2 and DQ8

my younger son = no symptoms at all

Myself = no symptoms at all

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anthony, i studied a little about your sons case... there is a thing called Hypogonadotropic hypogonadism... which leads to delayed puberty and low hormones, including what u have mentioned...

please, go to internet to study / to read about this and to see if there are some aspects about your boy.

i just want to help. good luck all you. take care.

mara

Mara,

Thank you for researching this for us. I'll look into this condition and its symptoms to see if it might pertain to my son.

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Anthony,please (if you don't mind) report back after the endo visit. I'm curious what he has to say and what he thinks of the VitA/Iron supplementation. Are you going to show him the study on vitamin supplement?

If you reply to this thread we'll get notified. Good luck!

We had a very informative visit with the doctor in Boston. He seemed very aware of the effects that celiac can have on delaying puberty, and suggested that by the sixth month of the gluten-free diet, the healing process in my son's body should be well under way. He reviewed the bone x-rays and concluded that my son's bone age is about 2.5 years behind his actual age (13.0 vs. 15.5 years), and indicated that he still has a significant window in which to complete his growth. Based on current size and this growth window, he indicated that my son will still likely end up at between 5'10" and 5'11", which came as good news to my son. Lastly, he had more lab work done to see how the vitamin and testosterone levels look, after 4+ months gluten-free and with the supplements being taken each day. We should find out this week the results of the lab tests.

What was also interesting this week is that both my wife and I were recently tested to see if we had celiac, but in both cases, the tests came back negative. My understanding has been that celiac is hereditary, so now we're not sure if the tests are accurate or even conclusive? Perhaps that is why our first doctors took nearly 2 years to diagnose my son, although they are now saying that he's had celiac all along? It would be nice if the medical profession could become better informed on this condition then they currently are.

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Did you have the celiac blood panels run, Anthony, or the genetic testing, or both?


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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What was also interesting this week is that both my wife and I were recently tested to see if we had celiac, but in both cases, the tests came back negative. My understanding has been that celiac is hereditary, so now we're not sure if the tests are accurate or even conclusive? Perhaps that is why our first doctors took nearly 2 years to diagnose my son, although they are now saying that he's had celiac all along? It would be nice if the medical profession could become better informed on this condition then they currently are.

Anthony, glad you had a good visit and a helpful doc. And I hope the test results show good news.

About the hereditary nature of celiac, yes the potential to have celiac is hereditary based on whether or not someone has one or both of the main celiac genes, which are HLA DQ2 or DQ8. (There are some people with celiac without the genes...but that's a longer story.) So I think you said that your son does have DQ2 so that means either you or your wife (or both) is a DQ2 carrier. You may or may not ever get celiac but you carry the potential for it. Someone can get celiac at age 2, 22 or 82 so you or your wife might develop it later ...or something to think about - one or both of you could have it and the blood test did not show it: The blood tests are not very reliable in that they have many false negative results but very few false positive results. Many people test negative with bloodwork but feel better off gluten even in the absense of proven celiac. You mentioned that your wife has off-and-on stomach problems, so a gluten-free trial for her might be illuminating.

I am one who had negative blood work but positive biopsy. I think doctor's understanding of celiac is poor and that the research into the disease is in the elementary stages. Based on symptoms, I've had celiac or intolerance since I was about 16. Diagnosed at 47. Your son was lucky to be diagnosed "early".


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

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We had a very informative visit with the doctor in Boston. He seemed very aware of the effects that celiac can have on delaying puberty, and suggested that by the sixth month of the gluten-free diet, the healing process in my son's body should be well under way. He reviewed the bone x-rays and concluded that my son's bone age is about 2.5 years behind his actual age (13.0 vs. 15.5 years), and indicated that he still has a significant window in which to complete his growth. Based on current size and this growth window, he indicated that my son will still likely end up at between 5'10" and 5'11", which came as good news to my son. Lastly, he had more lab work done to see how the vitamin and testosterone levels look, after 4+ months gluten-free and with the supplements being taken each day. We should find out this week the results of the lab tests.

What was also interesting this week is that both my wife and I were recently tested to see if we had celiac, but in both cases, the tests came back negative. My understanding has been that celiac is hereditary, so now we're not sure if the tests are accurate or even conclusive? Perhaps that is why our first doctors took nearly 2 years to diagnose my son, although they are now saying that he's had celiac all along? It would be nice if the medical profession could become better informed on this condition then they currently are.

good news.

im glad about you.

PS. i want to inform you that my son is on GFD since nov 18 this year, and his growth velocity appears that is improving a lot!!! we here in brazil usually uses metres and cm to metrics... the normal growth velocity is 4-5cm/year, for a child at 4-6y... we went to an appointment with our nutricionist, and my son had a 1cm gain/in just one month!!! this is wonderful for us!!! so anthony, i think your son will have a good growth... do u wanna do a bet? lets talk next year, in june, or july... and you will see the growth of your two kids!!!! your 15y and my 6y sons... im sure about this!!!!!!


36yo husband with probable celiac disease

== EMA and TTG: negative / no biopsy

== good response since GFD (nov/18/11)

6yo boy with probable celiac disease - since nov/18/11 on GFD

== negative EMA / positive TTG / positive Marsh I biopsy and negative HLA DQ2 and DQ8

my younger son = no symptoms at all

Myself = no symptoms at all

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good news.

im glad about you.

PS. i want to inform you that my son is on GFD since nov 18 this year, and his growth velocity appears that is improving a lot!!! we here in brazil usually uses metres and cm to metrics... the normal growth velocity is 4-5cm/year, for a child at 4-6y... we went to an appointment with our nutricionist, and my son had a 1cm gain/in just one month!!! this is wonderful for us!!! so anthony, i think your son will have a good growth... do u wanna do a bet? lets talk next year, in june, or july... and you will see the growth of your two kids!!!! your 15y and my 6y sons... im sure about this!!!!!!

That's great news!! Hopefully we'll notice an increase in his development soon as well!!

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Is he taking any high quality gluten-free supplements? That's pretty standard with a celiac diagnosis, to help the body heal. I would definitely being doing that in the least.

Yes, he takes a gluten-free multi-vitamin, Carlson Chelated Iron (27 mg), and Carlson Cod Liver Oil (1000 mg) each day. The cod liver oil supplies Vitamin A (2000 IU), Vitamin D (400 IU), and Vitamin E (10 IU). He also has a protein shake (100% Whey Protein) every day. He started the Carlson supplements about 3 weeks ago.

Does this sound like a good combination of supplements? Others on this board have recommended some of these.

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The doctor in Boston called today with some of my son's test results. His testosterone level is now 51, which is an increase from the level 19 test that he had back in May. The doctor suggested that he would recommend holding off on administering any testosterone shots for now, since it appears that he is seeing an increase being produced naturally by his body, perhaps in response to the gluten-free diet. I should receive the written report within a couple of days, which should have other lab results as well.

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The doctor in Boston called today with some of my son's test results. His testosterone level is now 51, which is an increase from the level 19 test that he had back in May. The doctor suggested that he would recommend holding off on administering any testosterone shots for now, since it appears that he is seeing an increase being produced naturally by his body, perhaps in response to the gluten-free diet. I should receive the written report within a couple of days, which should have other lab results as well.

That's great! I hope your son is on a smooth track to glorious good health.


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

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