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New Here With A 13 Year Old


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#1 GlutenFreex4

 
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Posted 25 October 2012 - 05:04 AM

I'm so happy to have found this forum. I have a 13 year old son who has yet to be diagnosed with either gluten intolerance or celiac however, I do suspect one or the other. He will be seeing his allergist (on our request) next Wednesday to have the basic skin testing done for wheat as well as other allergens. I know that skin testing isn't exactly a perfect science so regardless of this result we will pursue additional testing as required. Do many people here have experience with either the blood test and/or genetic test? Is one or the other a better way to go? And, if it is discovered through one of these methods that he is celiac, does he HAVE TO have the biopsy? What is the upside to this? If we are firm on our plans to be gluten free, does he need to undergo this procedure?

Our story is actually quite uneventful and if it wasn't for a close friend's son suddenly growing nearly four inches when taken off gluten, I doubt I'd be on this forum today. He, like my son, was on the small end of the growth chart. Now he's "average". This hasn't gone unnoticed by our family, especially my son! He is showing NO SIGNS of puberty, is hovering around the 5th percentile for height and closer to the 10th for weight. But, he has s-l-o-w-l-y climbed up the chart in this manner for a number of years so (apparently) neither his doctor nor his allergist (he has well controlled asthma/seasonal allergies + cats/dogs) have been concerned. Honestly, I wasn't myself until recently. It feels as is he's stalling right when he should be growing like a weed. His younger brother is now a solid couple inches taller and close to five pounds heavier. It is so difficult for him : (

Aside from his size, there really haven't been any red flags. However, looking back, he would occasionally complain of a sore stomach - especially after a large pasta meal. I just assumed he overate. He does occasionally have headaches but we conveniently tied that to his lack of water intake and him being dehydrated. He is constantly congested and we really haven't been able to get a hold of this. He is on Nasanex with little success. Recently though our toilet failed to flush properly after he visited it. And, there was a paler than average stool left behind. It was enough to catch my attention. Again, likely a sign...

To make this easier on my son, as well as me, we have elected to adopt a gluten free diet for our entire family. The kitchen has been de-glutened and we're on day four now... The more I've recently read on wheat, the less I feel it isn't healthy option for any of us! I know it's going to be a struggle however, I am determined to make this work.

Because he isn't suffering outwardly as much as some other kids clearly do, my greatest hope is that he will start to grow. And, soon! I would be so interested in hearing about others experiences with catch up growth in pre & early teens. I know that often young children grow quickly after adopting a gluten free diet. But, what about "older" kids? How long did it take to see some growth?

Lastly, my son is a big milk drinker. Does he have to give up milk initially to allow healing? If so, for how long?

Thanks for your help and advise in advance!
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#2 Cara in Boston

 
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Posted 25 October 2012 - 05:30 AM

Good for you for noticing the possible signs and taking action.

My younger son was diagnosed at age 5. He was already tall for his age, so we really didn't notice that over several months, he fell off his growth curve. He was tested for celiac based on a dramatic change in behavior. He really had no other symptoms (we were just lucky to get a really good doctor.) In the first three months of being gluten free he grew several inches. I am keeping my eye on my older son (poor kid, it seems like I am constantly asking him about poop) but so far, he has tested negative.

An allergist WILL NOT be able to test for celiac disease, gluten intolerance, or diagnose it. Having a wheat allergy is totally different. Some people have both, some don't.

The genetic test will only tell you if you are in the group that is most likely to get celiac disease. There are always exceptions. Many with the genes never develop it. Many without the genes do get it. So, for a costly blood test, it really doesn't help you get a diagnosis.

If your child has a positive blood test, you don't really need an endoscopy. A positive blood test is enough information to know you should be gluten free. However, many doctors will not give you a diagnosis without it, and in my opinion, it is important for someone so young to have an "official" diagnosis. You many need to provide "proof" to schools, summer camps, college dorms, even places of employment to ensure that your child is kept safe. There is also an issue if he ever wants to join the military. You will need a firm diagnosis. Some doctors will give you a diagnosis based on blood tests, symptoms, and positive results of the diet. Depends on the doctor. Our doctor explained that the endoscopy is also good to have so you can measure the amount of damage and track the healing process. That being said, if you get a positive blood test and a negative biopsy, you still need to be gluten free. The biopsy can often miss the damaged areas completely.

MOST IMPORTANT: Your child needs to be eating a regular, GLUTEN FILLED diet during the testing process. Our testing process took several months and it was very difficult to wait when I knew my child would feel better once we changed his diet. If you want to pursue testing, have him start eating gluten again immediately. Even a few days can alter the blood test results.

With the blood tests, make sure you get the full panel of tests. My son had very weird results - he was negative on the most common - leading his doctor to believe he did not have it (the genetic test also indicated he had a LOW probability of having it.) He was only positive on the IgG test. That, and the fact that he did not have any "classic" symptoms was very confusing to our first GI doctor. Luckily, we took him to a celiac specialist who found it on the endoscopy. We knew he had it, because by that time, I had tested positive for it as well. It seemed like too much of a coincidence, so we kept looking.

Even if the blood tests are all negative, the final test is the diet. Try it for 3 months and see if there are benefits.

I'm convinced everyone would benefit from a gluten free diet - so it can't hurt to give it a try.

Good luck, I hope you get some answers.

Cara
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#3 GlutenFreex4

 
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Posted 25 October 2012 - 07:21 AM

Thanks for the reply Cara.

Given that my son already has an allergist and since we're not certain what (if anything) is an issue for him, I figured we'd start there. Honestly, even if he isn't gluten intolerant/celiac, we would be trying to eliminate gluten from all of our diets. Since this is the case, I'm not certain how critical it is that we put our son through a biopsy. I guess I will need to give this some more thought and consult our doctor. If he has severe damage as opposed to no visible damage, what would change in his prognosis or diet? Would they redo the biopsy in the future depending on how it comes back or ?

Have you or anybody else on this list given their kids a nutritional supplement like BOOST? I spoke with our pharmacist and she indicated that he could take 1-2 per day as long as it wasn't replacing him actually eating meals. So, I have started this. If he was deficient in nutrients in the past, I want to ensure he isn't now. Not sure if there is any downside to this...?

Thanks again!
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#4 shadowicewolf

 
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Posted 25 October 2012 - 07:57 AM

A biopsy isn't all that bad. They knock ya out then its over, no real pain outside of a mild sore throat.

At any rate, if you go off gluten now, all blood tests will not come back accurately. Genetic test would of course. It could also mess with a biopsy.
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#5 1974girl

 
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Posted 25 October 2012 - 03:11 PM

Just to reiterate what she said. My daughter has biopsy confirmed celiac but tests negative to wheat on the skin test because it is not an allergy at all. If your allergist will do the celiac panel then that would tell you. Your son may have an allergy but as for celiac a back prick won't tell.
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#6 1desperateladysaved

 
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Posted 25 October 2012 - 06:22 PM

My son 9 failed to grow this summer and last spring. He had a parasite that likely damaged his small intestine. I was working with an osteopathic doctor on it. In the meanwhile, the family went gluten free 6 months back because of me. In the last 2 months he grew about at inch. I am beginning to wonder if he might have a gluten problem too. (He is adopted, so not genetically related) There are other possible reasons for his growth. We got rid of the parasites. We got rid of a yeast infection. We got rid of cholasteatoma in his ear. The bottom line is that we don't always know what solves our problem. Keep doing healthy things, and you should get health.
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#7 megsybeth

 
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Posted 25 October 2012 - 08:16 PM

I think it's important to have the blood tests, full panel while on gluten. The thing is, you can take him off gluten now but then you send him off to college and it's kind of a pain to be gluten free and maybe he doesn't get any symptoms. But symptom or not, if it is truly celiac it is deadly. You are more likely to develop a wide range of cancers if you are celiac eating gluten, on average seven times as likely. You can develop other debilitating diseases. When your son is a few years older he may roll his eyes at you and brush you off. You want science on your side.

This is why I decided to have my four-year-old suffer through another miserable couple weeks of diarrhea to get an endoscopy. Blood tests were inconclusive. I'll take him off gluten no matter what but I would prefer to be able to know if it's truly celiac and have some documentation to go with it.
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#8 GlutenFreex4

 
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Posted 26 October 2012 - 04:21 AM

Thank you for all of the information and advise. Much appreciated. Because my initial concern (since he really had no conclusive outward symptoms) was his slow growth, I am really hesitant to go back onto gluten UNTIL he has a chance to grow. He's at a really critical point in his social development and his size is causing him a great deal of distress. He is completely on board with trying whatever we can to get healthier and, hopefully, get taller. So, he really has been a breeze to convince that gluten free is the way to go. However, I totally agree that he may be less cooperative in his later teens :( At which time, provided he has shown some decent catch up growth, I would be willing to start him back up on gluten and challenge the test for that conclusive answer that he may need to continue. Hopefully he'll be mature enough to understand the damage he'd be doing and, perhaps, he would develop symptoms that would remind him why we're doing this in the first place...

That's where I'm at at this point anyways. Hopefully that sounds semi rational ;)
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#9 GottaSki

 
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Posted 26 October 2012 - 08:54 AM

I do understand the path you have chosen, but would highly suggest you have your primary or allergist order the full celiac panel NOW and have his blood drawn after school if at all possible. While the tests will not be necessarily as accurate after being a week gluten free - there is still important information to be found in these initial blood tests - they could still indicate he has Celiac Disease - thus answering any question now, rather than have it dangling in the back of his mind during the teen/college years. Once gluten has been removed for some time you will lose the opportunity for this original data.

I'd also suggest that if any you, your husband or other children have any unresolved health concerns/symptoms that you/they should be tested too! Celiac Disease and NCGI are genetic and present with over 300 symptoms.

There is a reason we are all such strong advocates for testing - many folks post here when the lingering questions become huge frustration.

Best wishes for improved health to your family - naturally gluten-free whole foods is a great way to start :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#10 cyberprof

 
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Posted 26 October 2012 - 12:06 PM

Thank you for all of the information and advise. Much appreciated. Because my initial concern (since he really had no conclusive outward symptoms) was his slow growth, I am really hesitant to go back onto gluten UNTIL he has a chance to grow. He's at a really critical point in his social development and his size is causing him a great deal of distress. He is completely on board with trying whatever we can to get healthier and, hopefully, get taller. So, he really has been a breeze to convince that gluten free is the way to go. However, I totally agree that he may be less cooperative in his later teens :( At which time, provided he has shown some decent catch up growth, I would be willing to start him back up on gluten and challenge the test for that conclusive answer that he may need to continue. Hopefully he'll be mature enough to understand the damage he'd be doing and, perhaps, he would develop symptoms that would remind him why we're doing this in the first place...

That's where I'm at at this point anyways. Hopefully that sounds semi rational ;)


This does sound rational, if he's on board with staying gluten-free and not cheating.

My son's story- short version.

I was diagnosed when he was 14. He was 100th percentile height and 100th percentile weight until he was 5, then fell to 5th percentile weight, 25th height at age 14. He only gained 4 pounds from age 12 to age 15 but the doc would say "Look he gained weight." And they would look at me (5'3") and say "Well he's just destined to be short." But hubby/dad is 6'1", my dad is 6'4" and son has four uncles and an aunt that are taller than 5'11".

At age 15 he was:
5'3" 96 pounds
Zero testosterone (not in puberty at all)
Bone age 12.3
Negative on celiac panel, diabetes, thyroid etc.

He was totally unhappy that he was short and slim. Dad/hubby vetoed endoscopy after negative blood test so son and I agreed that if his gene test was positive for celiac, he would go gluten-free. It was and he did and he went dairy free too. He didn't notice too much improvement right away but he did say that "I didn't realize that eating wasn't supposed to hurt."

Now at age 19 he is 6'3" and 165 pounds. He TOWERS over his pediatrician that told him he was destined to be short. He only grew about four inches the first year but he was in puberty six months after going gluten-free. Coincidence? We'll never know.

He went to high school and had two friends in his group (he was in a separate gifted program where they had all classes and activities together) who were celiac or gluten-intolerant and another who was also dairy free so it was a supportive environment. His friends were so helpful - they would pick restaurants for prom and homecoming dinners that were gluten-free (Maggiano's, PFChang's). He's now in college and they have gluten-free dining options in the dorms there and you don't need a doctor's note (big public university - University of Washington). He says he's never cheated.

Son will eat at places that would make me sick (for example, he'll eat tacos from Taco del Mar where they steam the corn tortillas in the same place as the wheat) but is pretty strict with himself and will send something back in a restaurant if it's prepared wrong. He knows how to read labels. He stocks his dorm with gluten-free canned chili, hot dogs, hardboiled eggs, pre-cooked rice, gluten-free soup.
He has a microwave and fridge and does just fine.

I've always told him that once he was grown he could do a gluten challenge but he says he's ok with what he knows now. He does get sick if he eats something that he shouldn't, so that is enough proof for him.

So, that's one kid's story. I hope your son grows and gets healthy.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

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

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

#11 cyberprof

 
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Posted 26 October 2012 - 12:32 PM

Oh, a few more things:

I read a medical article/study that said that for boys, they don't go into puberty until they reach ~110 pounds. Another study proved that Vitamin A supplementation for boys was as effective as hormone supplementation to reach puberty.

So when he went gluten-free, we had him take Carlson's Cod Liver Oil capsules (lemon flavor and they don't taste like anything at all and no aftertaste) that have lots of Vit A and D and are easily absorbed by damaged intestines. We also had him take a sublingual Vitamin B and a gluten-free multi-vitamin.

We also tried to get him to eat more, which was hard because eating hurt at least until he healed a bit. So whatever he wanted to eat, I'd cook. It took him a while to get used to gluten-free replacements but he liked my home-cooking "tweaked" to be gluten-free, like chili and cornbread, chicken enchiladas, chicken curry over rice, pot roast and mashed potatoes.

Your son could try diary-free for a while and then add it back in to see if it helped being df or not. But it is hard and limits the diet more, so you could also wait and see.

We used Earth Balance for butter substitute and I use it in baking. I'm a butter snob but I even like it in cake frosting and can't tell the difference. He loves my carrot cake recipe.

Let me know if you need recepies or brown-bag lunch ideas.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

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

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

#12 GlutenFreex4

 
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Posted 27 October 2012 - 05:59 AM

Thank you everybody for all the great advise and support. Cyberprof: you made my Friday :) I really needed to hear a success story like that of your son. Especially since I feel like we're sitting right where you were five years ago. I haven't been able to get into our doctor until November 9 which I know will be too late for bloodwork. However, I do like the idea of the genetic testing and think we will pursue this. The more I read about gluten intolerance/celiac the more connections I can make in my extended family where nobody has been diagnosed with celiac. My maternal grandmother has rheumatoid arthritis, both my mom and one of her sisters have sjogrens and another has thyroid issues. There definitely appears to be something there...

Interesting study about weight and puberty. I remember reading that girls need to reach 100 pounds but I had never heard anything about boys. If that's the case, we have time for catch up growth and then a nice puberty growth spurt since we have nearly 30 pounds to go ^_^

You mention supplements which I have been wondering about. So you had him on several things once he was diagnosed? Should I be concerned that Vitamin A would start him into puberty before a catch up spurt even if he's not 110 pounds? Maybe a good question for his doctor?

One of my son's favourite desserts is carrot cake and I was lamenting just yesterday that I may not be able to bake it for him again -- at least not the recipe I have. I would love yours! Additionally, the three meals you mentioned him enjoying would all appeal to my son. I think I can figure the pot roast and mashed potatoes out myself :P So, I would love those recipes! Thank you for the offer.
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#13 mushroom

 
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Posted 27 October 2012 - 07:01 AM

You can call the doctor's office and he can fax the blood work to the lab - you don't need an appointment. Heck, he could do it today if you made a good case with the nurse. :)
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Neroli


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

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Citric acid free June 2009
Potato starch free July 2009
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#14 GottaSki

 
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Posted 27 October 2012 - 07:15 AM

Mushroom is correct...a phone call explaining the need for blood tests because he has removed gluten from his diet should be sufficient to obtain blood work.

If you choose to wait until the appointment on the 9th - I would still have the full celiac panel drawn in addition to genetic tests - yes the celiac antibody tests are more accurate if he wasn't off gluten for two weeks, but are still important for future monitoring. The important thing to understand is ingesting gluten consistently before testing give the best opportunity for accurate testing -- not the only opportunity to obtain valuable information.

Nutrient testing is also important is an indication that your son has not been absorbing nutrients properly and should be monitored to supplement if needed while healing.

Good luck to you.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#15 cyberprof

 
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Posted 27 October 2012 - 09:54 AM

Glutenfreex4,

I agree with gottaski - you should get levels tested for Vit A, Vit D, B Vit and Iron. Calcium too if possible. Even if he's not deficient, I don't think taking a Carlson's capsule would be harmful. You can look up reputable maximum supplementation levels of specific vitamins via sites like National Institute of Health (US) or Mayo Clinic.

If he's not dairy intolerant, a Boost drink daily is a good idea.

Regarding the recipes, the carrot cake, cornbread and enchiladas aren't really "mine" - I make the Gluten Free Goddess's version found here: http://glutenfreegod...arrot-cake.html And the cornbread is hers too but I make it without the green chilis: http://glutenfreegod...een-chiles.html
Chicken enchilada recepie: http://glutenfreegod...enchiladas.html (Sorry to call them "mine" but she has great recepies that have become family legends. And her dark chocolate brownies are to die for - even for gluten eaters.)

I make chili from an old Betty Crocker cookbook and I'll post that later.

What kind of curry does your family like? Spicy? Authentic? With cream or coconut milk? I have several curry recepies.

Also, I'd like to put in a plug for Stephanie O'Dea's "A year of slow cooking" blog - she cooks only gluten free and these are great family meals. http://crockpot365.b...ili-recipe.html

Good luck and let us know how it goes.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

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

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




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