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Does Cd Permanently Stunt Growth?


carrielynn

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carrielynn Apprentice

Hi... please excuse this anxious post, but I've become a bit worried.

My son was diagnosed at age 5 with celiac disease. We've kept him gluten-free since mid-July. His mood and energy are great now. His skin looks a little better. My husband and I are just starting to "wake up" to the fact that he may have been suffering from celiac disease for a long time, maybe all his life (he's had so many "little problems" along the way and we're connecting the dots). I don't think celiac disease has affected his intellect at all. He seems like a smart little guy. But his height and weight are definitely stunted and he looks like a 3-4 year old and still wears 3-4 year old clothing.

My question is, is it possible that he'll catch up in height, or has celiac disease permanently stunted his growth? I don't know if it's possible for him to catch up or not. I realize this is an anxious question, but I have no information here. We're waiting for his first gastro appointment. (He was diagnosed by an alternative doctor. We spent many years and thousands of dollars seeing MD's who treated only his symptoms.)

He's being teased (ALREADY) by other kindergarteners at school about his size, so that's another reason for my anxiety. He's having a hard time with that.

If your child had delayed growth and then experienced a growth spurt after going gluten-free, please let me know. Tell me the age when your child was diagnosed and when you noticed the growth spurt. I appreciate any and all stories.

Carrie... who could use a stiff drink right now


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tarnalberry Community Regular

My understanding is that if nutritional problems causing short stature are caught early, there is a very good chance the effect can be corrected. No guarantees, and no promises on it happening quickly, but he's got more than a decade of growing ahead of him to catch up.

Jnkmnky Collaborator

Teased already??? Gee, my son is 7 and in the first grade this year. He did kinder twice. He's the same size NOW as his classmates since being left back. But still one of the smaller kids. No one teases him. I'm shocked to hear that the kids are that aware at that age. I would talk to the teacher and make any harrassment stop right now. Kids can be quite humbled at that age by a firm talking to by an authority figure.

As for his size... Well, I think he may be on the small end for good. I could be wrong, but I think a being deprived of vital nutrients during these initial growth years has to have a permanent impact. It only makes sense. Just be happy that you've discovered it now and are doing what is necessary. I've heard of boys who are dx later in the teen years and were suffering socially from delayed secondary male characteristics...not hitting puberty on time. Short's not so bad when you consider some of the other complications of not getting the nutrition your body requires to grow.

Try to equate the teasing over his height as teasing over wearing glasses, or having lot of freckles. You don't want your son to blame his LIFE-LONG disease for his hurt feelings. He needs to be *friendly*, not hostile towards this disease. It's not going away. Put the blame on the other kids and their lack of manners, have a teacher address it, and keep the negatives of celiac disease in the hazy, hazy background for now. My son has lots of celiac disease awareness shirts that he wears proudly to school. Some are quite cute, with the "silly-yak" looking all goofy on them. It helps the other kids see the disease as a real issue, but as a light-hearted issue.

celiac3270 Collaborator

He will catch up. That's what I've been doing--my growth on the chart is nearly straight up...jumping many percentiles with ove 40 pounds gained in the last few months. The dr. is just wondering when it'll slow down because at this rate I'll be 6'4" at age 17--lol, I won't be. More like 6'. The interesting thing he told me is to keep eating--a lot. He said that eating a lot drives up your weight, which will drive up your height. In other words, in order for me to get tall, he'd rather that I keep gaining (I'm at the 25th percentile now--even if I eventually get a little overweight cause it will make me taller...

Jnkmnky Collaborator

Optimism is great, but it has to be tempered with a dash of realism. A young child who has significant growth issues is NOT likely to make up all he missed. celiac3270, was your celiac triggered even at a very young age? Or did it kick in after being a toddler? I think this makes a difference. There are large Celiacs out there, but they probably didn't have the disease triggered from such a very young age. From birth to 3 my son was sick. He is small as a result. It's been four years. He's not going to grow to his full 'at birth' potential due to the starvation he endured for the first three years. It's not so bad, though. It's way better than so many other things that could have been his reality.

carrielynn Apprentice
He will catch up.  That's what I've been doing--my growth on the chart is nearly straight up...jumping many percentiles with ove 40 pounds gained in the last few months.  The dr. is just wondering when it'll slow down because at this rate I'll be 6'4" at age 17--lol, I won't be.  More like 6'.  The interesting thing he told me is to keep eating--a lot.  He said that eating a lot drives up your weight, which will drive up your height.  In other words, in order for me to get tall, he'd rather that I keep gaining (I'm at the 25th percentile now--even if I eventually get a little overweight cause it will make me taller...

<{POST_SNAPBACK}>

celiac3270,

Were you a very small child all your life? How long did you have celiac disease before it was diagnosed? After you went gluten-free, how long did it take before you started growing?

My 5-year-old son has the size of a 3-year-old... he's 41 inches and 36 pounds. Now that we're connecting dots, we've realized he's been on the low end of "normal" for YEARS. Seems like his growth started slowing down when he was 1-2 years old. I remember bringing this up with his doctor 2 years ago (his big brother's hand-me-downs weren't tracking properly with his age) and the doc pointed out that he was still on the charts (very low end) and that his growth was consistently up so he wasn't worried. My son didn't start out on the low end -- was at 50% height when he was born. The problem is, my son never presented with the "classic" celiac disease symptoms. He NEVER had diarrhea. He ate pretty well. The dots that we are now connecting are: a really bad case of eczema, constipation, and fatigue/moodiness. We thought he'd outgrow the eczema since his brother had, but instead it got worse and worse and worse until he started breaking out in little sores. We didn't know what was going on with the constipation and fatigue/moodiness, but those symptoms sure weren't signs of my version of celiac (at the time), so we never considered that.

We have bent over backwards all these years to feed him lots of fruits and vegetables. He's a decent eater. And now to find out that he's probably been malnourished! Isn't that cruelly ironic?

Thanks so much for your input.

Carrie

Jnkmnky Collaborator

Carrielynn,

You mention your son not having cognitive delays and that's great. Would you consider having him stay back a year to facilitate the social goals of school? If his gait is that of a much younger child, that might not improve and be on par with the other kids for some years. That kind of issue is important because it may keep a kid from participating in an effective way wtih his peers. I notice my son is right where he needs to be now that he's been held back a year. We had our son do kinder twice even though his first teacher said he scored well enough to pass into first grade. He simply wouldn't have had social success for years to come if I'd allowed him to move forward at that point. So they put him in a k-1 class the following year to keep an eye on his development and have the new teacher's professional opinion in the mix with mine. From the onset, she was onboard with my goals for my son. He was clearly not able to keep up physically with the first grade classmates. She said he chose interactions with the younger kids, fit in better socially with them, needed to be in their P.E. class, (they separated the P.E. into two sections), but was placed in the first grade reading group and did first grade math worksheets.

I'm not anti-education in favor of all things social- But I think the social aspects of school are essential to enjoying school. It's a 13 year "career" and many people overlook that fact. Who wants a "job" that they HATE going to everyday for 13 years?! My son is so SO happy this year. He has made friends with two boys this year, already. They eat lunch together everyday and plan playground equipment assaults with scary enthusiasm. As a result, I'M having a great school year...finally! It's a huge difference from all the worrying. I'm not telling you what to do, I just wanted to share the positives of my solution.


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mommida Enthusiast

The slow or stunted growth associated with Celiac disease is most likely due to a calcium defiency. Another reason for the calcium defiency, on a gluten diet, the celiac can not absorb the fat-soluble vitamins, including vitamin D (critical in the absorbtion of calcium).

The good news... The body can repair itself. The bone density in children is shown to return to normal on a gluten free diet.

A bone density test is recommended to determine the degree of bone loss.

The above information is from the book Kids with Celiac Disease by Danna Korn.

The following is my opinion...

Your son has a very good chance of catching up in growth. If you have concerns check with your doctor for other causes of the slow growth. Give the gluten free diet, and time a chance. Research into this subject deeper, and know that there are options out there for treatment, if necessary.

Laura

carrielynn Apprentice
Carrielynn,

You mention your son not having cognitive delays and that's great.  Would you consider having him stay back a year to facilitate the social goals of school?  If his gait is that of a much younger child, that might not improve and be on par with the other kids for some years.  That kind of issue is important because it may keep a kid from participating in an effective way wtih his peers. I notice my son is right where he needs to be now that he's been held back a year.  We had our son do kinder twice even though his first teacher said he scored well enough to pass into first grade.  He simply wouldn't have had social success for years to come if I'd allowed him to move forward at that point.  So they put him in a k-1 class the following year to keep an eye on his development and have the new teacher's professional opinion in the mix with mine.  From the onset, she was onboard with my goals for my son. He was clearly not able to keep up physically with the first grade classmates.  She said he chose interactions with the younger kids, fit in better socially with them, needed to be in their P.E. class, (they separated the P.E. into two sections), but was placed in the first grade reading group and did first grade math worksheets.

I'm not anti-education in favor of all things social- But I think the social aspects of school are essential to enjoying school. It's a 13 year "career" and many people overlook that fact.  Who wants a "job" that they HATE going to everyday for 13 years?!  My son is so SO happy this year.  He has made friends with two boys this year, already.  They eat lunch together everyday and plan playground equipment assaults with scary enthusiasm.  As a result, I'M having a great school year...finally!  It's a huge difference from all the worrying.  I'm not telling you what to do, I just wanted to share the positives of my solution.

<{POST_SNAPBACK}>

We will hold him back if that's the right thing to do at the end of this year. We had him evaluated by a professional yesterday and she noted that he has hit all his milestones except for the physical development. He's been asking to have some of his new friends from kindergarten over to our house, so he's sociable with them. We've got the entire year ahead of us, so if it's obvious that he needs to remain in kindergarten, then we'll do it. I think it's too soon to make that decision now.

My other child is just below average height, and I don't think he has celiac disease (we're going to have him tested). So we may just have shorter-than-average boys. I was just worried that the celiac disease was going to make him even shorter.

--Carrie

carrielynn Apprentice
The slow or stunted growth associated with Celiac disease is most likely due to a calcium defiency.  Another reason for the calcium defiency, on a gluten diet, the celiac can not absorb the fat-soluble vitamins, including vitamin D (critical in the absorbtion of calcium).

The good news... The body can repair itself.  The bone density in children is shown to return to normal on a gluten free diet.

A bone density test is recommended to determine the degree of bone loss.

The above information is from the book Kids with Celiac Disease by Danna Korn.

The following is my opinion...

Your son has a very good chance of catching up in growth.  If you have concerns check with your doctor for other causes of the slow growth.  Give the gluten free diet, and time a chance.  Research into this subject deeper, and know that there are options out there for treatment, if necessary.

Laura

<{POST_SNAPBACK}>

I'll have to check out the Kids with Celiac Disease book. We will talk to the gastro doctor about the growth issues when we have the appointment.

It is so ironic. All these years we have been feeding our kids so HEALTHY. We don't do junk food unless it's literally our last option. My kids eat healthier than most children. Their babysitters are always amazed at what our children eat. And I've been giving them multi-vitamins, including calcium for awhile. And my son LOVES milk, but when we had him allergy tested, milk was off the charts and we were told he wouldn't be able to have milk ever again. I think the nutritionist who saw him is incredibly knowledgeable -- and he was the ONLY person to find the problem, after we saw numerous MD's. But now I'm reading that the milk thing could have been affected by the celiac disease and once his gut heals we can re-introduce it. (I'm bringing this issue up with the gastro.)

In the meantime I've been giving both kids soy and rice milk, plus calcium supplements.

Thank you again for the pointer to the Kids with Celiac book.

Carrie

mommida Enthusiast

It is my pleasure to help.

You did ask about growth and age of diagnoses of other children. My daughter was diagnosed at 17 months. She did not gain any weight form 7 months til the start of the gluten free diet at about 16 months. (She lost weight during that time and her height did keep creeping up slowly.) She had a major growth spurt and weight gain about 3 months on the gluten free diet. I won't even look at the percentiles and growth charts to compare, just that she is steadily growing from her last measurements.

Laura

celiac3270 Collaborator

As a baby/toddler I was tall...then I fell back to middle of the class. By diagnosis I was shorter than most kids, but not REALLY short...just on the very low end of "average" or one of the less short short people, lol. I'm just saying, though, that I did spurt up and am still growing rapidly...I may not end up as tall as I would have been, but I'll still be at least 5'10", 5'11" (according to the doctor)...

Indea88 Newbie

My 2 year old has just been diagnosed but his been gluten-free for about three months. His length hasnt been affected at least I dont think so hes 40 in. in the 75% it is his weight that has been affected not gaining and losing as well. I have had quite a few comments about him gaining weight. from people who hadnt known hes gluten-free

ryebaby0 Enthusiast

My son was very small -- barely 5 lbs. -- at his 36 week birth. He stayed small (but on the charts, probably at 10-15%) right through his dx at age 10.(at which point he had fallen off the charts completely) He was deficient in nearly all categories of nutrients but especially zinc and iron. Without zinc, a child cannot grow (I didn't know that either) so he took supplements for that for about 6 months (drinkable, no worse than amoxicillin)

Anyhow, he turns 12 next week and is now in the 50-75% for height. He's grown almost 4.5 " in a year. Two shoes sizes. Would he have done it anyway? Don't know. Don't think so! Make sure they do a blood test for zinc!

Hope that helps!

Joanna

elisabet Contributor

Hi,..My son was always alittle bit smaler than his age group,when he was a baby the doctor said the reason is that I am breast feeding him and babys who are breast feeded are smaller than those who aren t.He is 13 now we started gfdf diet scinse last september and now he is among the taller kids in his class,most his growth has happened during the last six month.

best of luck eisabet

Hi... please excuse this anxious post, but I've become a bit worried.

My son was diagnosed at age 5 with celiac disease.  We've kept him gluten-free since mid-July.  His mood and energy are great now.  His skin looks a little better.  My husband and I are just starting to "wake up" to the fact that he may have been suffering from celiac disease for a long time, maybe all his life (he's had so many "little problems" along the way and we're connecting the dots).  I don't think celiac disease has affected his intellect at all.  He seems like a smart little guy.  But his height and weight are definitely stunted and he looks like a 3-4 year old and still wears 3-4 year old clothing.

My question is, is it possible that he'll catch up in height, or has celiac disease permanently stunted his growth?  I don't know if it's possible for him to catch up or not.  I realize this is an anxious question, but I have no information here.  We're waiting for his first gastro appointment. (He was diagnosed by an alternative doctor.  We spent many years and thousands of dollars seeing MD's who treated only his symptoms.)

He's being teased (ALREADY) by other kindergarteners at school about his size, so that's another reason for my anxiety.  He's having a hard time with that.

If your child had delayed growth and then experienced a growth spurt after going gluten-free, please let me know.  Tell me the age when your child was diagnosed and when you noticed the growth spurt.  I appreciate any and all stories.

Carrie... who could use a stiff drink right now

<{POST_SNAPBACK}>

carrielynn Apprentice
My son was very small -- barely 5 lbs. -- at his 36 week birth. He stayed small (but on the charts, probably at 10-15%)  right through his dx at age 10.(at which point he had fallen off the charts completely)  He was deficient in nearly all categories of nutrients but especially zinc and iron. Without zinc, a child cannot grow (I didn't know that either) so he took supplements for that for about 6 months (drinkable, no worse than amoxicillin)

Anyhow, he turns 12 next week and is now in the 50-75% for height. He's grown almost 4.5 " in a year. Two shoes sizes. Would he have done it anyway? Don't know. Don't think so! Make sure they do a blood test for zinc!

Hope that helps!

Joanna

<{POST_SNAPBACK}>

It is so hard to know whether the gluten-free diet is respondible for the growth spurt or not. I would like to think it was. Thank you for letting me know your experience. It sounds like your son had celiac for awhile before being diagnosed. I'm glad we're not the only one... we've been going to doctors for years about his worsening eczema with no resolution. I'm still dealing with anger against the doctors, but that's another story.

As for the zinc, I just started giving my son some zinc supplements, but he doesn't like them at all. I will bring up zinc with the gastro doctor when we see him in a week or so. There's some zinc in his multivitamin, but I don't know if it's enough. He eats really well, so hopefully he's getting some zinc there.

Carrie

carrielynn Apprentice
Hi,..My son was always alittle bit smaler than his age group,when he was a baby the doctor said the reason is that I am breast feeding him and babys who are breast feeded are smaller than those who aren t.He is 13 now we started gfdf diet scinse last september and now he is among the taller kids in his class,most his growth has happened during the last six month.

    best of luck  eisabet

<{POST_SNAPBACK}>

Wow. Interesting. How long do you think your son had been dealing with the celiac problem before it was diagnosed?

This is all giving me some hope. I know my son isn't going to be a very tall person anyway, given our genes. I just didn't want the celiac disease to permanently cause damage.

Carrie

elisabet Contributor
Wow.  Interesting.  How long do you think your son had been dealing with the celiac problem before it was diagnosed?

This is all giving me some hope.  I know my son isn't going to be a very tall person anyway, given our genes.  I just didn't want the celiac disease to permanently cause damage.

Carrie

<{POST_SNAPBACK}>

Hi again, I don t really know,but he had dry skin and bad sinus as far as I can remember.so maybe 10 years or so,you said that your son always had little problems,can you tell me like what?

The reason that we thought about gluten,was that my son started to loose his hair ,2 years ago,it took 1 year til we came to the idea of gluten.

elisabet

connole1056 Rookie

Am I the only one who thinks it is sad that the parents who seem to be most concerned with their child's weight are the parents of small children? It used to be that the fat kids got made fun of, now it's the small ones. I am NOT condoning it, but when I was younger it was unusual to see overweight children so they were always made of because they were different. Now there is an epidemic of childhood obesity so normal weight and small kids are the ones being targeted. It's very strange. I would much rather be underweight than overweight, and I feel the same ablout my daughters.

I think it is more difficult for boys who are small than for girls who are small. However, it should be kept in mind that because so many people are overweight, the clothing sizes have been changed. What used to be a 4T is now a 3T. Some of the old 5T's are even 3T's now. My daughters are 7 years apart, and the clothing change for children took place in between their births, so when I look at some of the clothes I had saved from my first daughter and compare them to the "same" size clothes of my second daughter, the difference is amazing!! My youngest daughter is not even the celiac but she is a few ponds less than her sister was at the same age. She is 4 1/2 and is just getting into a 3T. She is 28 lbs, so I have heard just about every rude comment there is regarding her size. I would never comment to the parent of a fat child that their kid was unhealthy, so I used to get very upset when I was questioned about my daughter. Now I just blow it off. I cannot let myself get upset by rude people.

That said, it is natural to worry about our children. It took my oldest daughter a few years to fill out after going gluten-free. She is now in about the 20-25th percentile for height and weight at 11 1/2 years old. For reference, she is 67 lbs. and 4'6", and wears mostly size 8 clothing, but some size 10's in certain brands. Both girls are perfectly healthy and that is my first concern. If they get made fun of, they deal with it. I do not worry too much about it because it is natural for kids to pick on one another. It is part of socialization and growing up. However, incessant teasing is a different matter and when that occurs it should be dealt with.

Many of the celiacs I have met did catch up to their peers. But I have never heard it took place quickly. I do think it is much harder for adults than children. Some kids grow amazingly fast during puberty, so one can never tell who the biggest people are going to be by looking at the size of kindergarten children. My brother was the smallest boy at 8th grade graduation and one of the tallest at high school graduation. Those 4 years were amazing! So try not to worry or focus on it!

ryebaby0 Enthusiast

"Am I the only one who thinks it is sad that the parents who seem to be most concerned with their child's weight are the parents of small children?"

I agree with you that for boys, being small is difficult. We didn't, however, worry about my son's weight/size until he was 9 or 10 and hadn't grown a single inch in about 2 years, and even then it just seemed like his pattern. His celiac diagnosis followed a weight loss of 17# -- he was hospitalized when he hit 47 pounds (he was 10, and a 50th weight would have been about 75 pounds) and stayed in the hospital for 7 weeks.

I know you don't intend to hurt our feelings, but for some of us, weight gain is a very real verification that our children's insides are healing. I look, very much, forward to the day when nobody cares what he weighs. It's not a trivial or incidental or imagined worry.

:)

Joanna

connole1056 Rookie

I certainly did not intend to hurt anyone's feelings! I do not even know what I wrote that could even possibly be construed that way!! In fact I did mention it was natural for a parent to worry about a child! I really do not even know what you quoting me had to do with the rest of what you wrote. The sentence you quoted refers to the fact that it is usually the parents of underweight, not overweight, children who worry, and it would seem like those parents should be worrying about their children's weight! I never said the parent's of the underweight kids have no reason to worry. As the parent of a celiac I am well aware of the connection between a gluten-free diet and weight gain. The point is that most people do catch up eventually, although they may not be in the top percentiles, and therefore celiac disease does not PERMANENTLY stunt growth. And because this is often the case it may ease some parents' worries.

Jnkmnky Collaborator

I don't believe you can make up for all you've lost if it's significant. My son will be small as a result of being starved the first three years of life. If this was something you could magically make up, there wouldn't be an emphasis on proper nutrition to begin with. Getting proper nutrition early on matters. If you were deprived of that nutrition due to an undx disease, then the first thing parents of kids need to do is lobby harder for awareness so this doesn't happen to others. It's so unnecessary. A little effort on the part of the medical community and the best efforts of conscientious parents who seek out excellent nutrition for their kids wouldn't be wasted. Does celiac disease permanently stunt growth?? Well, it certainly gives you a crappy starting point if not dx on time. For those who think that everything can be regained- I hope the power of positive thinking works for you. But is being short really such a tragedy? You can't change height unless you're willing to undergo that bone-breaking procedure... So why stress about it? None of us want our kids to lament the things they can't change. It's not healthy for them..or us.

ryebaby0 Enthusiast

The sentence you quoted refers to the fact that it is usually the parents of underweight, not overweight, children who worry, and it would seem like those parents should be worrying about their children's weight!

Ohhhhhh..... (sighing.....) I was taking it like "sad" as in "pathetic,pointless, unnecessary", which I think must be a side effect of living with teenagers, since that's the only way I hear it used.... I absolutely already knew you didn't mean to hurt anybody (and I wasn't so much hurt as being sleep deprived and oversensitive to a personal "button issue") but I appreciate the explanation.

Joanna

carrielynn Apprentice
I don't believe you can make up for all you've lost if it's significant.  My son will be small as a result of being starved the first three years of life.  If this was something you could magically make up, there wouldn't be an emphasis on proper nutrition to begin with.  Getting proper nutrition early on matters.  If you were deprived of that nutrition due to an undx disease, then the first thing parents of kids need to do is lobby harder for awareness so this doesn't happen to others.  It's so unnecessary.  A little effort on the part of the medical community and the best efforts of conscientious parents who seek out excellent nutrition for their kids wouldn't be wasted.  Does celiac disease permanently stunt growth??  Well, it certainly gives you a crappy starting point if not dx on time.  For those who think that everything can be regained- I hope the power of positive thinking works for you.  But is being short really such a tragedy?  You can't change height unless you're willing to undergo that bone-breaking procedure...  So why stress about it?  None of us want our kids to lament the things they can't change.  It's not healthy for them..or us.

<{POST_SNAPBACK}>

It would be nice if you (or anyone) could provide a pointer to some research that backs up these beliefs. I would very much appreciate some scientific information about this -- whether it's good news or not. Sure, it makes sense that being malnourished the first 3 years of life could have an effect. But do you know that for a fact -- being malnourished in the early years permanently stunts growth? Maybe it does for some children and not for others. It would be interesting to know. Hey, we all know lots of parents who feed their kids complete JUNK or children who will only eat 3 things and their kids could qualify as being malnourished, but they grow just fine.

I completely agree with you about this situation being unnecessary if the medical community would get with the program and do standard tests on these little kids.

It's not so much the power of positive thinking as it is finding out some good, valid, scientific information to deal with my anxiety about this situation.

And of course being short is not a tragedy, but it certainly provides Yet Another Potential Obstacle for kids in school. I wish this were not the case, but it's human nature. My child is already being teased by some of the Behemoth Kindergarteners and it's not been fun for all of us to deal with on top of everything else. (I'm trying to tell him he's so smart he'll be everyone's boss in 25 years, but he doesn't get it right now.)

Carrie

Jnkmnky Collaborator

we all know lots of parents who feed their kids complete JUNK or children who will only eat 3 things and their kids could qualify as being malnourished, but they grow just fine.

Yeah, well even complete JUNK is fortified with "essential vitamins and minerals" these days. :blink: And the kids who qualify as pathologically picky eaters usually don't persist for years...plus, they don't have atrophied villi negating the nutrition they ARE ingesting. Short stature is listed as one of the possible results of undx celiac disease. Also, recent research is pointing a finger towards undx celiac disease being a cause of osteoporosis. Obviously, bones are negatively impacted when they are robbed of adequate nutrition. I haven't looked for hard proof that being starved for the first few years of life leads to short stature. Sometimes common sense is all you need for proof. How long did it take "them" to figure out smoking IS harmful to your health, not just "may be harmful"? I'm not waiting on a scientific, medical study to prove to me that being deprived of nutrition the first three years of life due to malapsorption will stunt your growth a bit. You could find the proof yourself if you're that concerned. I don't care if my son is short. He doesn't care if he's short. He's also been held back a year, so he's fitting in just fine. If your child is short and is being harrassed at school, you can make it stop by having the school authority figures step in. Boys stop growing around the age of 20. You'll just have to wait until then to see how big he's going to get.

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    • lmemsm
      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
    • max it
    • cristiana
      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
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