Does anyone know if it is too late for my 7 year old son to catch up to his contemporaries? I know some Celiacs will be of short stature no matter what. But I've read in so many places that children who are diagnosed "early" will probably catch up. Does anyone know what "early" means here? He stopped growing at age 4. He's grown only about 2 inches since he went gluten-free 8 months ago. I'm happy that he has, but his friends still tower over him. I've read many posts here where kids are growing several inches immediately after going gluten-free. My husband is pretty tall and I am of average height for a woman. Also, my son's gained almost 9 pounds, but sometimes I think it's because I'm continually begging him to eat and offering him food and not really because his stomach has healed. He does complain less about stomachache but no where near as often. I'm trying to concentrate on the positive, but I just feel bad for him. Any stories to share on this subject would greatly be appreciated.

Two inches in 8 months is good. Please relax mom, and don't make food a real big issue. I would be more concerned with his motor, spatial, verbal, cognizent (sp?) skills. Is he happy, doing well with others, learning, and plain feeling better? Remember, even w/o celiac holding his growth behind, every child grows at their own rate. When did you husband hit his growth spurt? My husband was barely 5'9" in h.s., but hit a growth spurt when he was 20 or 21 and is now 6'2". There's too many genetic variables to pin his height (or lack of) solely on celiac. Just make sure his diet is balanced and if you would feel better, gluten-free supplements probably wouldn't hurt - talk to his ped though.
Annette

Our son was 9 when he was diagnosed and was of average height at that time. In the past two years of being gluten-free, he has gained close to 20 pounds and grew 4 1/2 inches. Our daughter was diagnosed at 4, now age 6 and has grown 2 inches, but is still a little underweight, but is improving. I think it is the age. I'm sure your son will sprout up too!

Mom 2 2

Mart, he is growing, he is gaining. Your son is only seven, give it some time. Is he still having stomach and bowel problems? It could be that he needs to be off dairy and soy as well (possibly other things too) before he'll be 100% better and really take off on his growth. Something to think about.

I know of another mom with a son with celiac that has been gluten free for 2 years and he is four and only the size of about a 2 year old.
I see all the positives here of kids growing by leaps and bounds, but my 2 year old is the size of a one year old. He is very small. No where near as tall as kids his age, but he has improved as far as irritabilty, no diarhea, reflux, has gained weight and moved up a bit on the chart, but still is in like the negative 10th percentile. I am not sure this is related to celiac. My husband is average at 5'9inches and I am 5'2inches. My son has been gluten free for a year now. I was hoping so much that he would at least get on the chart, but not yet. I know he is gluten free 100%. WE don't eat out and I am very careful and he is developing normal and very healthy otherwise. My son also has something called NF1 that can cause short stature, so I believe this is why he is shorter. My oldest son without celiac disease is only in the 10th percentile for height and weight.
Don't worry too much. He is growing and there is really nothing you can do about him not being as tall as you would like. He may have his growth spurt later then other kids, which is very common for alot of kids. Just try and focus on his health and happiness and you are doing everything you can for him.
Monica

Key, how did they diagnose the NF1? Cafe au lait marks at birth? I know a lady with it, and two of her four kids have it, but I don't think they knew about the two kids until they were over 20 years old and started to get the tumours.

Yes, My son has cafe au lait spots. That is all he has right now. He is small though and he did have some UBO's they call them on a brain MRI. UBO's stands for Unidentified bright spots. ANyway, we just have to watch him. So far he is healthy. I was devastated when I found out to say the least. It is a crazy disease and can have all sorts of different things that "can" happen. I am much better after a year of knowing about it. It is just sort of in the back of my mind. I can't stress about what may happen to him, because nothing may happen. Some people only get a few of the skin neurofibromas and the Cafe au lait spots and some people get things much, much worse. Does your friends husband or does she have it? Usually if two kids have it then one of the parents has it and has past it on. Our son is a spontaneous mutation, because my husband and I don't have it and either do our children.
Thanks for asking. How are your friends kids?
Monica

Thank you everyone for your help. Key, my son has a cafe au lai spot on his face since birth. Every doctors he's seen asks about it, but never really went into it. They always asked how many he has. I pray that God protect your little son, that he may remain well and that the spots will be the extent of the problem.

My son was dx at three. He's turning 8 in June. He's small. I held him back a year due to developmental delays caused by the Celiac being UNdxed. He's still only taller than ONE other kid in his class!!! Shocked face aside, he's happy, loving school, loving friends, playing like a maniac, laughing throughout every day and a joy to be around. Don't over feed your son in order to make him grow taller... he'll just grow wider! Have him get a good night's sleep everynight. Stress the importance of going to bed on time everynight. I tell all of my kids that's when they do the most growing. My two youngest are in bed by 8pm, read a book till 8:30 and lights out. There's nothing more you can do at this point.

Actually, she's my Mom's friend, I haven't seen her in 20 years (she lives across the country...my sister sees her once in a while). She's 70 years old or thereabouts. Her daughter is around 42 and decided that she wouldn't ever have kids, because of the NF. The son (if it's the right one I'm thinking about...she has 3 boys) has 2 kids I believe, and I'm not sure if they have NF either. I'd say that my Mom's friend and her 2 kids have it much worse. They are covered in the skin neurofibromas. Her story is on a website, but I can't think of the address right now. Hang on a sec...here it is. http://www.nfon.ca/Storie_Marg.php
The website says she's 67 but it's a couple of years old.
Take care,
Linda

Have you had his vitamin/mineral levels checked? They will give you a 4 or 5 page analysis of deficiences and recommendations. Made a big difference.
www.spectracell.com
My Dr. already had a relationship with them maybe if you print out some info your Doc. might establish a relationship with them. I think the site also lists practioners they work with.

Linda,
I looked at the page you sent. It makes me a bit sad when I see cases that are severe. I knew a lady growing up that had it and I didn't know she had it actually until after my son was diagnosed.
IT varies with how severe it is for people. It is the most one of the most underdiagnosed disease out there, because some people just have a few of the little bumps and a few cafe au lait spots. Sixty percent of cases are mild. So that is my hope for my son. I pray he will do well. Like I said, you can't worry about his future and what may or may not happen. I will love him and his family will adore him no matter what happens to him. Right now he is the most adorable little guy. White blond hair with blue eyes.
Monica

Dont worry at all,he will grow.my son was among the shortest in his class,at age 11 he started gfcf,diet and amazingly now he is among the tallest.

Just a couple thoughts -- being short isn't a birth defect, after all and he will be as tall as he is wired to be, but having said that I understand your worries. My son was also very short for his age, but now is about the 30th percentile height, 50th for weight. After having been literally off the chart, that's stupendous! My only suggestion is to have his zinc levels checked. My son was dx at 10 and was drastically deficient. Zinc, apparently, is vital to growth and immune function. He took a prescription zinc supplement (liquid) twice a day for 6 months.

My son has been gluten-free for 2.5 years. He was hospitalized at 47 pounds, and now has grown 6.5 inches and gained 40 pounds! (remember though, he was about 20 pounds underweight at his lowest....) Your mileage may vary !

joanna

I can relate to how badly you feel for him for being small. My son first became ill in 4th grade. Went thru many test, doctors, drugs. Drs didn't know so they would pass us on to another til we were worn out & depressed & made to look like we were both nuts

After about a year of no drs my son begged me to take him to a dr to see why he was not growing. He wasn't losing weight but wasn't gaining either. 15 yrs now. He wore the same size for 3 years and his classmates were leaving him in the dust so to speak. He dropped 2 lines on the growth chart which was below the 3 % on height & alot below on weight.
We got a new local pedeitrician, who sent us to an allergist(First DR TO HELP figure it out)& we went to an endocrinologist at the university of mi.
DS was dx 2 weeks before we met with endo. He guessed him to have growth delay(LATE BLOOMer) but now we know it was due to celiac & being sick for soooo long. Anyway, endo took xray of hand for bone age. DS's bone age was 13 to 13 1/2 (HE BEING 15). So dr said he should be able to catch back up with any growth hormones , keep on the gluten-free diet and add more calories. See him for follow up in June.
Now if his bone age would have been the same as his chronological age then he would have tested farther for a problem for not growing.
So many dr's but nun that want to stick with him & figure it all out. He was never tested for deficiencys. He ended up with gilberts disease- liver malfunction causes jaundice. Alot of other allergies, he was so bloated before dx that he had a dr at the uofm document his "POT BELLY" but do nothing about it.
He is now in 10th grade. LOVES sports but being 6- 8 inches shorter & 20-30 Ibs lighter than his classmates it has made sports Very Depressing for him. Alot of things actually, Like girls.
I think alot has to do with how much damage was done & how fast the healing is coming along. Never fast enough for them though
DS is now back up a row on chart at 5'4 1/2". around 5th %(25th% befor ill) but his weight is slow coming, still way below 3%.94Ibs

If there are no other problems(such as thyroid or??-- he should catch up. Thats what our endo told us.
Good luck with all, I know how hard it can be butttt- God does not give us more than we can handle!

One thing I found interesting here is all the others with cafe au lait spots. My DS has one on his knee that catch drs attention

There's a lot of room left for growth at the age of 7, so if celiac is the only issue, no, I don't think that will be a permanent hamper.

By no means. I've grown 8 inches and gained 50 pounds in a little over two years... and I was diagnosed at age 13.

Wow. This really gives me hope.

I stopped growing at 10 because of undx'ed Celiac... I haven't measured my height since being gluten-free, but it's been 3 years now, I'm almost 37, and the other day both my sister and my husband commented that they thought I looked taller! Now I don't know if this is even possible, but wouldn't THAT be something?

I would say, as long as he's gluten-free, don't worry too much. make sure he's getting a good multi vitamin and eating a balanced diet (and remember kids will balance out their diet over days rather than in each meal) Try to relax...

my daughter was very tiny when she went gluten-free at 3 1/2, now she's one of the tallest girls in her class...

Nisla, I see that your daughter had an "inconclusive blood test," but you said she has celiac. Is it possible to have celiac and have a negative or inconclusive blood test? Do you think this jjust because she had a positive response to the gluten-free diet? I'm only asking because my son has celiac (blood test and biopsy positive) but my daughter had an "inconclusive blood test" when we tested her in September. The doctor told me she did not have celiac, but that she could get it. However, based on what I've read on this board, I put her on a gluten-free diet immediately (just in case). When I went back to see him (for my son) he asked how my daughter was doing, and I told him I put her on the gluten-free diet too. He said that it was regrettable that I did that. He said it is totally unnecessary. I disagree, because I think that maybe docs just don't know enought about diagnosing celiac at this time.

I'm afraid really for my husband who was diagnosed with IBS years ago. After my son's diagnosis, I was sure my husband had it too (even though he is not at all underweight). However, his blood test came back negative, so he eats gluten-free only at home. This is really too bad because he actually feels better when he eats at home. After eating in a restaurant, we have to run home so that he could use the bathroom. What are your thoughts?

After our son was dx, my husband's doctor told him his blood test was "negative" but when we asked to have a copy of it, my DH discovered that "negative" was actually borderline positive and the doctor knew little about celiac (the doc recommended a LOWER gi biopsy.....). He went gluten-free and has never felt better after a long and relatively happy life punctuated by various GI issues and a complete inability to gain weight. If your husband feels better gluten-free, why not BE gluten-free?

joanna

I was diagnosed when i was a baby, but look at coulter, when i met him after he was diagnosed, i was taller than him. now apparantely he is 5.9 or something.

Yes, Joanna, you're right. He understands he feels better when he eats gluten-free, but I guess he's just one of those people that need to hear a diagnosis from a doctor.

I have a copy of his test results, if anyone is knowledgeable enough to interpret whether or not his test is borderline.

My daughter's pediatrician dx'ed her with celiac after her GI refused to based on the inconclusive tests. He did NOT do the complete panel and kept insisting she "just had IBS" even though I had a positive dx of Celiac and I'm her mother and she had ALL the symptoms I had as a baby. After the GI was such a jerk about it, her ped. agreed with me to try the diet and see how she responded, so based on her positive dietary response and the genetic factor (me) that we would say that it is Gluten intolerance in her file, but that we "know" that it is really celiac. So in my opinion, the dietary response is the best diagnostic tool especially if it concurs with other factors like a genetic predisposition.

I have to strongly disagree with this. My DS was not diagnosed until he was almost 20 even though he had many celiac symptoms all his life and was diagnosed with failure to thrive at age 1. We will never know how tall he was actually wired to be. And for a man who is less than 5' tall being short can sure seem like a birth defect. You all with younger children who have recently been diagnosed have hope, and the strong likelyhood of somewhat normal growth that the idiot doctors took away from my son by deciding at 1 year of age that he was spoiled and just didn't want to eat normally (he was addictied to pasta from the first time he had it and would eat nothing else, doc said just mix veggies in). Of course I have to live with the guilt of believing them.

ravenwoodglass,
I am sorry your son never got diagnosed. THat is very hard. My son will likely remain short and small. He has been on the diet very strictly for almost a year. He has only gained 6lbs and only grown 2 inches. He is just very tiny. HE is not on the growth chart at all for height or weight. He acts completely normal for his age. I know he is not going to be very tall one day and it makes me sad to think of him being so tiny as a guy one day, but I have to deal with it. I just keep thinking that alot of people aren't considered "perfect" and we as his family will have to nurture him as much as we can.
It isn't your fault he didn't get diagnosed. If I hadn't had the internet and Google, I wouldn't have ever diagnosed my son.
Monica

Some of us are meant to be on the small side, some of us on the large. My DS was in the 65th percentile at birth but dropped to the -10 by a year, and never had a growth spurt and I have hoped for 3 years he would at least gain a couple inches. I think the issue bothers me sometimes more than him. One thing I would suggest is that you have your DS evaluated also by an endocrinologist, sometimes celiac can cause a problem with the growth hormones. This was not the case with my DS, they at least checked that out, too bad they didn't know to look for celiac back then. I think what makes me the most angry and sad is that I was so sick for so long also, couldn't they put 2 and 2 together?

I am sorry you were sick for so long. It really isn't fair. I have had my son tested at the endocrinologist, but it has been a little over a year or more, so I am thinking of having him evaluated again. It is tough. Yeah, I know what you are saying about it bothering you. My oldest son that doesn't have celiac (his blood tests were all negative) is also small. He is only in the tenth percentile, but I figure someone has to be in the 10th percentile. My youngest son with Celiac is extremely tiney.
Growth hormone scares me, especially since he has other things going on.
Monica

My son is tiny too, was in the -10th percentile, but he hasn't been measured in about 3 months. I'm 5'2 and my husband is 5'8". We both have grandfathers under 5'6", so genetics aren't on his side.

As far as the comment about being little feeling like a birth defect - We have a friend from college who is just barely 5'. He is AMAZING! He is so athletic and plays so many sports. He got married a couple years ago to a drop dead gorgeous girl - she's 5'7". He never complains of his height and is so outgoing that people who know him don't even notice it. He's a posterboard for good attitudes.

My husband was also small most of his life. He hit a growth spurt in college and grew about 3 more inches. You never know when those growth spurts might hit! I, on the other hand, haven't grown since 6th grade. Went from the tallest to the shorest in no time flat.....

TCA,
I agree that attitude and accepting this and being positive goes a long way as to how kids view themselves. I am always SO inspired by watching the DIscovery health channel. Two of my kids have things. The first one has a scar on his head from ear to ear. You can't see hardly any of it, but on one side a bit. No one has ever asked us about it and I don't think most people see it at all actually. It bothers me a bit, but he can have it revised, but the funny thing is that I see other people with scars and don't think anything of it. I knew a short guy growing up and he had like all the women! My son with the scar is in the tenth percentile, but has all the women liking him. He is like his dad! My husband is 5'9 and I am 5'2 inches and so genetics isn't on our side. I too had a short grandfather.
Anyway, I think our kids will be fine. No one is perfect!
Monica

Don't get discouraged I was just diagnosed just before my 30th birthday, I have had celiac probably since I was born (very Long story). My 2 year old son saved my life...he had severe symtoms and I was determined to find out what was wrong with him in the process I found out what was wrong with me...I have been blessed with an amazing GI. According to him there are only only a few labs in the country that corectly test for celiac disease so if your tests are inconclusive be sure that it is a reputable lab. When I was 14 I weighed about 69lbs...I loved volleyball but I was the shortest girl in my class and the skinniest. I started playing volleyball more and didn't make it home for supper usually. My two favorite foods were rice and popcorn so that is what I made when I got home from volleyball practice...lucky for me they are gluten free. (I am a vegetarian and we usually eat tons of gluten.) Within one summer I grew three shoe sizes...5-6inches (I had a stretch mark up the center of my abdomen from growing so fast) And weighed 120lbs. When I went to school the next year I was 1/2 an inch taller then my friends when I use to barely come up to there sholder. I beleive that between a gluten free diet and puberty everyones kids have a chance of growing. My 5 year Old was the same size between 6 months and 18 months but now she is taller then most 6 year olds she knows...so don't worry yet.