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Forrest'smom

Newly Diagnosed At 13 - No Symptoms Except Short Stature

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My son was diagnosed with celiac disease by his endocrinologist. He has been at the 3rd percentile for height for years. Finally we visited a doctor for testing even though his pediatricians said it was just constitutional growth delay. The endo. did a panel of blood tests and they came back positive for the antibodies for celiac disease. We then had an intestinal biopsy. The doctor came out of the OR and told me he thought the tests were wrong because the intestines looked fine to him, but he said we had to wait for the pathology report to be sure. The pathology report came back verifying that he does have celiac disease.

I would love to "talk" with anyone who has a child that has no symptoms of celiac disease except short stature. He has a teammate with celiac disease, but this child vomits for 2 hours if he eats gluten. Forrest feels fine, no diarrhea, no constipation, no stomach pain, no protruding belly. I worry that he won't stick to the diet because of this. BUT my main question is if anyone else has a child like this that was diagnosed longer ago. Forrest has been on a glulten free diet for 4 months and has grown 1 inch. He has typically grown 1 1/2 to 2 inches each year of his life. His only motivation to stay on the diet is the promise that he should grow. Does anyone have a child in similar situation that can tell me how their child has grown after going gluten-free??? I have learned from my "research" (mainly internet searches) that there is a segment of society that has no symptoms except short stature. I would love to connect with parents of other children that fall into this group. I live in a town that does not have a pediatric gastroenterologist. So any information that anyone has about this type of celiac disease sufferer might be able to give me more information.

Thanks!!!!

Forrest's Mom

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Guest greengirl

My daughter is 11 and she has obvious symptoms, but when I was her age I did not have obvious symptoms. I was very short and small for my age. I do remember having a sensitive stomach in the morning (I couldn't drink oj) but no D, persistent stomach aches, or anything that would have made my parents take me to the doctor. I did get a "lump" in my throat feeling sometimes as a child, and I was a worrier, but again, nothing obvious to signal there was a problem.

Now I'm 37 and have been gluten free since January. I had persistent D since my 20's, then a period of anxiety and weight loss, acid reflux, vomiting attacks every month since 2004, gallbladder removed 2004, and finally last summer persistent abdominal pain, gas, bloating, cramping, etc. I also have ulcerations in my small intestine.

SO, it only gets worse. Your son could easily be okay (no symptoms) eating gluten through his teen years, but the damage is being done and eventually it will catch up to him!! You are very lucky to have identified the problem early and must be adamant about conveying the seriousness of this to him. Maybe he could get an account on this forum - there is a section for teens only. Also, check into local support groups. I'm sure there others in a similar situation.

Good luck,

Christine

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My son was dx at 10, with many symptoms but had been very short his entire life. Prior to dx his "best" percentile was 10, with no other symptoms and of course we had no idea of the time bomb ticking away inside him.

After a long hospital stay, recovery at home, and all that, he has grown about 7 inches in the past 2 years, and is now above the 50th percentile. Your mileage, of course, will vary! My husband was dx via bloodwork, and he is 6'2' and a "silent" celiac who discovered that his "normal" health was massively improved by a gluten-free diet -- i.e., he didn't realize how sick he actually felt, until he was really truly well for the first time in his adult life.

Once your son is gluten-free for longer, it is likely that gluten will make him physically react. Many celiacs become much more sensitive to gluten exposures once they are healed and well inside. Again, this differs for everyone. As the parent of a teen, I can tell you that testing and gluten exposures are choices they will make and you will have to cope. It happens. Do not pity him this illness, or allow him to pity himself. Pity is an excuse to indulge, as if his life is incomplete without Domino's. "Everyone deals with something" is our motto, "and this is just our share". Even if he doesn't feel it, the gluten is in fact damaging him.

Good luck! It gets easier

joanna

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Guest nini

I know there are some people who don't have any symptoms except for short stature, but I haven't met any of them (that I know of)

I am short, but I also had lots of symptoms as well but the Dr.s still told my mom that I was just a hypochondriac, and the longer I continued to eat foods with gluten, the sicker I got. Your son is also very lucky for this to have been caught early. And eventually after he's been off gluten for a while, he may find that he DOES have reactions.

I've noticed that the longer I'm gluten-free, the more severe my reactions get to smaller amt.s of cross contamination.

Have you and his father and any other siblings been tested as well? This is genetic and he had to get it from somewhere, and the odds of one of you also having it is really high.

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Wow - I checked back expecting not to have any responses and I had 3 great ones. Thanks so much!!!! We just went to his school where he got a citizenship award and it broke my heart seeing him stand up there with kids 12 and 15 inches taller than him!!! Anyway you all had helpful things to say. I had been sort of hoping that he would begin to have a reaction so that he would have an incentive to stay away from it. You are right about the pity thing. He LOVES hushpuppies and the other night we had barbecue and some hushpuppies came with it. His dad told him it was OK for him to have them just this once. I was furious because I know that is not the road to start down. Luckily my son agreed with me and said he wouldn't have any. This is tough because I have to other teenage children - ages 16 and 17. There is just no way to have a gluten-free household. But we are finding our way.

Thanks again. If anyone else out there can comment on increases in height after going gluten-free, please do!!

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Hi there. My son (he'll be 13 in October) was also just diagnosed a month ago, and also has no symptoms except for short stature. He used to have terrible stomach aches a couple of times a month from about the age of 4 until about 9, and then they went away and I never really thought about them since. I found out that that can happen (the symptoms can disappear during pre-adolesence and reappear with a vengeance in your late teens). I too think it's going to be very challenging for him to be disciplined and stay on the diet when he has no obvious syptoms or effects from eating gluten. Especially entering the teenage years when all his friends are eating whatever they want. Feeling "different" may prove to be an issue. I've been using the "growth" issue as a motivator as well. I hope it's enough. As for what to expect in the growth department, I'm also anxious to see what kind of changes he will undergo. It's good to connect with someone who has a boy around the same age going through the same stuff.

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Hi momothree - I am a mom of three as well! Did you discover the celiac disease while having him checked out for the short stature? What kind of doctor are you dealing with? I had not read anything about th symptoms disappearing and then coming back. If you have any websites or books or anything that deals with our special kids, please share them. I don't know much except what I have found searching the web. I wish we had a pediatric gastro. in town. I am considering finding one in a nearby town and taking him there. I just don't know if a pediatric gastro. would know much more than the regular gastro. we are seeing (he is rather young) According to our endocrinologist, there is just so much unknown about celiac disease period.

Stay in touch!

Forrest's Mom

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We discovered my son's celiac disease quite by accident. I had heard about it years before from a friend who thought her daughter had it, and it always stuck in my mind because of his stomach aches (which he hadn't had in about a year at that time). I guess I mentally filed it away at the time. Then a year and a half ago I had a baby girl and a while after starting her on solids, we noticed she had really "sandy" poops (sorry if it's too graphic). They were terrible. After asking every medical professional I could about them (and basically getting blank stares and shoulder shrugs), I guess I started thinking about celiac again. After taking them both to the doctor, she decided to start with Tyler. Basically he had the past history of stomach aches, had always been the shortest in his class, ate incredible amounts of food, and sometimes had floaty stools. So, the blood test came back very high and he was scheduled for the biopsy. Viola! After all that, we still don't really know if my 18 month old has it or not (testing can be very inaccurate in very young children--so I read on this forum :) ). We have her on a gluten-free diet too just to see if things improved.

One of the first books I read when we started truly believing that it was celiac (about half way through the testing) was called: Kids With Celiac Disease: A Family Guide to Raising Happy, Healthy, Gluten Free Children. That is also where I first read about the symptoms disappearing. (Danna Korn)--an awesome book. I learned so much about celiac through that book. We are in Vernon BC, and had to drive to Vancouver (6 hours) to see a ped. GI. The good part is that once you have a diagnosis--I don't think there is too much need to see a GI. That's what I've been led to believe at least. I think just annual blood tests. Right now I guess we are just going to work with our family doctor. It seems that it is so hard because the regular docs don't seem to know much about celiac. The books and forums seem to have more info (thank goodness for them!!). Take care.

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You are fortunate you found out about your son. That is interesting about your baby. I hope the gluten-free diet helps.

Doctors don't know much about celiac disease. My son's doctor is early 30's but is in a large practice with a couple of very old doctors. I know a woman that visited the older doctor in the practice and he told her that if she were not experiencing constant diarrhea and having constant stomach pain, then there was no way she could have Celiac Disease!! You would think the continuing education for the field of gastros would at least make sure they all know about it. Are you going to have your son tested yearly to make sure he doesn't have the antibodies? That is what a friend of mine does for her son. Of course he vomits for 2 hours if he eats gluten, so they pretty much know if he accidently gets some.

Thanks for the info!

Ryebaby,

I would bet maybe your husband's celiac disease Wasn't triggered until after he was grown? Is that what ya'll think? It is so strange to me that it affects different people in such different ways. Now everytime I see a really short child - I want to run up and tell them to get tested!!! Of course my son has 2 friends that are very small and they have a growth hormone difficiency. You just never know.

Thanks for the info!

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Guest nini

since my daughter started the gluten-free diet 3 years ago, other than once a year well check ups at the pediatrician, the only time she has needed to go to the Dr. was for a strep test when strep was going around her school and she had a sore throat and a really high temp... She has not needed to go back to see a GI at all, neither have I.I don't care to be poked and prodded and tested as long as I am continuing to improve on the gluten-free diet and I know beyond a shadow of a doubt if I accidentally get glutened... (just thinking out loud about the comment about why go to a gi if you are doing fine on the gluten-free diet)

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My son's only symptom wasn't as much short stature as much as failure to thrive. He turned 5 in March and had been on the 75% curve for height most of his life. In the last year or so he dropped to the 25%. He didn't not have any other obvious celiac symptoms. Our pediatrician ordered bloodwork (including a celiac panel) and a bone-age x-ray. At the time, his chronological age was 4 years/10 months but his bone age turned out to be 2 years/8 months. He should catch back up over the next few years or continue to grow after many of his peers have stopped growing.

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My son's only symptom wasn't as much short stature as much as failure to thrive. He turned 5 in March and had been on the 75% curve for height most of his life. In the last year or so he dropped to the 25%. He didn't not have any other obvious celiac symptoms. Our pediatrician ordered bloodwork (including a celiac panel) and a bone-age x-ray. At the time, his chronological age was 4 years/10 months but his bone age turned out to be 2 years/8 months. He should catch back up over the next few years or continue to grow after many of his peers have stopped growing.

Do children with celiac who go gluten free continue to grow after other children their age have? I didn't know this. Does anyone know if this is fact?

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I think the reason she said that her child will continue growing after other kids have stopped is because of the bone age. The bone age is figured by xraying the left hand. My son's hand was xrayed at the age of 8 and had a bone age of 6. That is why they said he had "constiutional growth delay". Do an internet search for that and you will get a full explanation. That is the reason I did not have him tested further by a specialist. Call it luck, fate, a coincidence - whatever - my son ended up on a soccer team with a dad that was a pediatrician, a child that already was diagnosed with Celiac and another child - whose father was also a physician - who was as small as my child. If not for all of this, I would not have had Forrest tested further. I would have just trusted the diagnosis of constitutional growth delay.

The main point is that a child with a bone age lower than his chronological age will typically grow later in life than others. Case in point, my husband is 6'1" - his best friend growing up is also 6'1". My husband did not reach that height until his college years - his best friend was that height in 8th grade. Some would just call these kids "late bloomers". Now with the bone age thing, we know more about it. I think it is a totally separate issue from the celiac disease. It turns out my son has both - or at least that is what we think at this point. Hope that all makes sense. If not, write back with your questions and I will try to help.

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Hi everyone: My celiac was dx about 15 years ago. My daughter is now (in 3 days)27 years old. Now get this...I am 5ft 11 inches. Allyson is 5 ft 3 inches. Her father is over 6 ft. I had heard that patients who have celiac have a higher incidence of having short children. She is smart and healthy in every other way, just short. If I could attach a photo of her wedding you would laugh at how I tower over her. She has never had an issue with stomach aches, or food issues. But her philosophy is to eat the pizza now just in case she develops it in the future. HA! Now that is good thinking. Cynthia :D

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My son hasn't been tested but is on an elimination diet for suspected food allergies since he was born. He's two now and is small for his age. He's about 31 inches and weighs only 28 pounds. He doesn't get D, but he does get constipated and really really bad gas and bloating. And he has reflux. He is eating a little bit of gluten here and there, so maybe I should get him tested. :/

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My son with celiac is about 32 inches and weighs about 24 lbs. He has been diagnosed for a year now, but remains pretty little. He has grown and moved up on his chart a bit, but still very small compared to other kids his age of 2yrs.

My one son that hasn't been tested for celiac that is 4 years old was in the 95% for weight and the 75th% for height, but then he has dropped to the 50th% for weight and the 25th% for height. He has really bad gas all the time. Otherwise he doesn't have many symptoms at all. My pediatrician feels that we should just wait on him, to have him tested, but I fear that he could have it and it is stunting his growth. He complains of tunny aches occasionally. It has been like 6 weeks since he has complained of them. Usually it happens when we are traveling and he isn't eating as healthy of foods, so that is what i have blamed it one. I have it though and so does my one son. I had the other son tested and he was negative.

Now I think I should have him tested to be sure. I would hate him to go his whole life without knowing like I did.

Monica

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Guest nini

keep in mind that the tests can only rule it in if they are positive, If they are negative it doesn't mean anything. There are too many false negative test results out there and the Dr.s saying "oh they don't have this" and sending people home to continue to eat gluten then later on down the road after they have continued to get sicker and sicker, they finally test positive for it. My point, the tests aren't as sensitive or as reliable as the medical community would like you to believe. They want to convince you that you have to have the blood tests AND the biopsy and they all have to be positive before they will consider this, but the truth is, this diagnostic method misses a great many of the cases... the best diagnostic tool is dietary response, and the medical community won't tell you that because they don't make any profit off of a diet.

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Wow, reading your post made me feel like I finally found someone that sounds just like me! My son was diagnosed at 14 (right before he started high school) and virtually had no symptons. He just slowed down in his growth. He started dropping off the charts slowly, and the doctor suggested that he run a battery of tests, one of the for celiac disease. I said sure, thinking that I was skinny and my husband was skinny and short for a while before we both hit a growth spurt. Well, after positve test results and a biopsy, sure enough, he has celiac disease. My son just turned 16 and has been growing like a weed. He finally hit 105 pounds (2 years ago at 14 he was 71 pounds) and he is about 5 feet 7 inches. A giant compared to where he was 2 years ago (under 5 feet). He is still small and skinny for his age, but at least he isn't the shortest anymore. He had no symptoms other than an occasional stomache and migrane (about 2-3 a year) and lots of mouth sores. Since he has been gluten free, he feels better and when he now eats gluten, it's an immediate reaction (usually vomiting). I think that just the fact that he will grow if he doesn't eat gluten was incentive enough for him. But now that he never eats it, if he does, he immediately reacts. If you have any questions or just want to vent, please do. Believe me, we have all been there. It's tough to raise a gluten free teen!

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i can honestly say i did not have symptoms tell i was almost 21 none at all so i meen it can really just sneak up on you

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Forrest's mom:

Just wanted you to know that he can still have hushpuppies. I'm a throw it together kind of cook, but this is what I did and they were soooo good:

gluten-free cornmeal and soy flour in about a 1:4 ratio

1 egg

1 small can corn

1 banana pepper, chopped finely

about 1/2 c. onion, chopped finely

water to make it the right sticky consistency

salt

baking powder

I mixed it well then dropped it in canola oil in the deep fryer by spoonfuls. They really were good. Hope that helps!!!!

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My son was diagnosed with celiac disease by his endocrinologist. He has been at the 3rd percentile for height for years. Finally we visited a doctor for testing even though his pediatricians said it was just constitutional growth delay. The endo. did a panel of blood tests and they came back positive for the antibodies for celiac disease. We then had an intestinal biopsy. The doctor came out of the OR and told me he thought the tests were wrong because the intestines looked fine to him, but he said we had to wait for the pathology report to be sure. The pathology report came back verifying that he does have celiac disease.

I would love to "talk" with anyone who has a child that has no symptoms of celiac disease except short stature. He has a teammate with celiac disease, but this child vomits for 2 hours if he eats gluten. Forrest feels fine, no diarrhea, no constipation, no stomach pain, no protruding belly. I worry that he won't stick to the diet because of this. BUT my main question is if anyone else has a child like this that was diagnosed longer ago. Forrest has been on a glulten free diet for 4 months and has grown 1 inch. He has typically grown 1 1/2 to 2 inches each year of his life. His only motivation to stay on the diet is the promise that he should grow. Does anyone have a child in similar situation that can tell me how their child has grown after going gluten-free??? I have learned from my "research" (mainly internet searches) that there is a segment of society that has no symptoms except short stature. I would love to connect with parents of other children that fall into this group. I live in a town that does not have a pediatric gastroenterologist. So any information that anyone has about this type of celiac disease sufferer might be able to give me more information.

Thanks!!!!

Forrest's Mom

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Hi, Forrest's Mom,

Welcome aboard!

I never had problems with gluten until this year--but I grew up in a low-gluten household (my mom simply didn't like pasta and bread, so she never served them)! I wasn't even short (I'm 5'6"0 BUT I have a host of auto-immune problems, and that, I believe, is the real danger with celiac/gluten intolerance.

Having a gluten-free household is not as impossible as it sounds. You can buy or make gluten-free breads, pancakes, waffles, cookies, cakes, and pasta out of rice flour, tapioca flour, potato flour, corn meal, etc., and most of them taste darn good!

I have found all kinds of advice and information on this board, not to mention terrific recipes (even gluten-free matzoh balls!). Best of all, this board is an incredible source of support, even if whatever difficulties you might be having have nothing to do with celiac! :)

When I decided that there was no way I was going to make 2 batches of everything (one gluten-free for me, one "normal" for everyone else in the family), I simply told my family that they would have to eat whatever I cooked or make it themselves. Except for letting them use the far less expensive "normal" bread for their sandwiches for school, they have not complained even once.

Added benefit--my middle son's eczema and all 3 kids' occasional tummyaches have completely disappeared. Kinda makes yua go, "Hmmmmm...."

Nini has a "Newbie Survival Kit" that's e-mailable. I think you email her with a request for Nebie Survival Kit in the subject window....

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Hi,

I couldn't believe it when I read your post today. It sounded so similar to our situation. I got back on this site today because my son will turn 17 next week and I needed some ideas for a "cake". He was diagnosed last summer and his only symptom was that he wasn't growing. I took him to an endocrinologist thinking she'll say he's a late bloomer like the rest of us. Instead she said "you've got my attention!" Height and weight were off the charts. He'd always been in the 3rd% but now he was literally off the chart. She did tons of blood work and sent us to a ped. GI. We only have 3 in town which I should be grateful for. But here it is 11 months later and he's only grown his usual 2 in/ per year and has only gained 10lbs. He's even lost weight over the past 3 or 4 months. At 17 he's a whopping 5'2' and 87lbs! :( Before he was diagnosed, he would have stomachaches but nothing more than most kids - or so we thought. After going gluten-free, they all stopped! As a side note - now his regular Ped is checking any kid with more than usual stomachaches for Celiac! Something good has already come of this! :) Anyway, in March when he started losing weight, his stomach started bothering him again. But it wasn't the aches like it had been. It was just that he couldn't make himself eat more without feeling bad or sick or something. At other times he felt nauseous. Ben started having trouble eating enough calories to gain weight. The ped GI and endocrinologist decided it wasn't a growth hormone issue and that he was just having emotional issues associated with eating. He's exceptionally good about keeping gluten out of his diet. Like your son, growing is a huge motivator. Even when he started eating more and his stomach started bothering him again, his ttg was down to 5.9. Gluten was out of his diet. I don't have celiac but do have GI issues. I was at my Dr in early June and asked her about Ben. She said to bring him in to see her and that she wasn't impressed with the Ped GI's here in town. She thinks something else is going on - maybe Crohn's or something. I also talked with a guy here in town who specialized in teenage boys with eating issues. He thought Ben had issues that a kid his age, not growing and not able to eat "normal" food would have. But he said that we should definitely get all the physiological issues checked out first. His appt is for July 10.

It's extremely hard to see your teenager not fit in to any group. He's not been through puberty like everyone else his age. He doesn't want to do the same things as they do. As I understand it, he's been malnourished and that has delayed puberty. His bone x-ray indicates he could get to 5'9" which is tall for our family!!! His bone age was 12 last summer.

I think and have been told that the teen years are the worst age to get the diagnosis. Not that this diagnosis is easy for anyone but the younger kids grow up learning and knowing about their needs and at their stage in life it's easier for them to accept it emotionally. They also get use to how the gluten-free food tastes. Adults, can rationalize this disease better due to the maturity that puberty brings. They can deal with it emotionally after a while and make themselves try different foods, eat salads and meat that is not on a bun. They don't mind ordering different food as much. But what teens want more than anything else is to be just like everyone else. When these kids hear that they are different - even more than they already feel they are, it's almost impossible for them to accept and deal with this lifestyle change. We've taken two out-of-town trips this year and the result was devastating for him. He won't go on any more trips now. We've also gone to many events this year where a meal was fixed or everyone brought food. He would just look at it and almost cry. He knew he couldn't eat any of it. Then he would just decide he wouldn't eat. I tried bringing food he could eat but it wasn't until the last weekend that he decided that was ok to do that. I've heard it takes a few years for them to adjust to things like that. I keep hoping that on the other side of puberty, he will mature and be able to deal with "being different". He knows all the right stuff, like everyone has issues to deal with and no one will pay attention to what he eats and even that kids will find SOMETHING to tease you about. He also knows that once he grows and matures, he won't have to deal with these issues so much. But he still can't deal with that yet. He will graduate from high school next year. Then we will have to deal with college and all the issues that come with that. He's decided to go to the community college here in town for a year. It's safer. I also think it will give him an extra year to mature physically and to get his nourishment back. He had a terrible year in school with his grades. I can now empathize with those who struggle in school because of poor nourishment. It's been such a difficult year on all of us. I actually had to start cooking again! When your kids get a certain age and start going in all directions, you stop fixing every meal for them. After all, any teen can fix their own meals! But not Ben! UGH. Ben is the 3rd of 4 boys. I was REALLY out of the cooking and meal fixing phase when this disease came along! I've finally adjusted somewhat. I fix every evening meal again. The house is full of everything gluten-free. This summer is a little more difficult. His brothers are home from college and aren't as careful to keep crumbs out and off of everything. They've all been instructed and try but kids just aren't going to be as mindful of all the possibilities. And then to top it off, all THEIR friends are over and in and out of the kitchen! It's been real fun having them all back and in the house again but they are now getting educated as well!

I guess that’s all for now. Let me know if you want to talk more.

Ben’s mom

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I am short only 5' but I wasn't diagnosed until I was in my mid-twenty's. I think it is from Celiac I never had symptoms until I was in high school and then I started getting sick. Went to tons of doctors but no one figured it out until 10 years later. I think it is too late for me to grow now but it looks like you caught your son's in time. I hope he sticks with the diet and grows to be real tall!

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