oh, Thanks for the link, I couldn't find it in the beginning so I posted my own to get some info. Thanks!

So, we have made an appointment for the endoscopy in a couple of weeks.
The fact they will have to sedate my child is scary to me. What if he is allergic reaction? True, it's the hidden damage you don't see that is scary. This is hard to explain to people too about those who are not aware of gluten problems.

It's been taking a long time to do grocery shopping these days. I'm thinking of consuming less gluten as well.

Anonymous wrote:OP,

You're not alone:
http://www.dcurbanmom.com/jforum/posts/list/305173.page#3545630

You're going to start reading labels if you don't already. Wheat, barley, and rye is out. Oatmeal is controversial--some say fine, other's no. Modified cornstarch may mean added wheat, so usually avoid. Also, spices and things like shredded cheese may have anti-caking additives that may be wheat based, so again, reading labels help.

Bob's Red Mill and Arrowhead Mills both offer GF oatmeal. Oats are naturally GF but often get cross contaminated during processing.

OP,

You're not alone:
http://www.dcurbanmom.com/jforum/posts/list/305173.page#3545630

You're going to start reading labels if you don't already. Wheat, barley, and rye is out. Oatmeal is controversial--some say fine, other's no. Modified cornstarch may mean added wheat, so usually avoid. Also, spices and things like shredded cheese may have anti-caking additives that may be wheat based, so again, reading labels help.

18:32 again - to address the endoscopy question, I don't think you want to skip it. At this point endoscopic evidence of intestinal damage is *the* criterion for an official diagnosis of celiac, so it's good to know for sure that that is what you're dealing with.

As for needing one later - probably not. Assuming a GF diet, the intestines of celiac children should heal in 6 months, so they don't generally redo te endoscopy. Though they will normally redo the bloodwork after 6 months, generally I think to reassure parents that the diet is infact GF.

My child was diagnosed this spring at 5. Also with minimal symptoms - a persistent bellyache was the only sign, and no real other risk factors.

We got the endoscopy and the procedure was pretty straightforward. For us her intestines were visually normal but with evidence of damage in pathology.

Assuming your son has celiac you need to cut out all gluten - not just wheat - and you need to be strict about it. It's overwhelming at first, but give it a few months and you'll (mostly) have it down.

On the social side it's not a big deal - lots of kids have restrictions these days. But from an emotional standpoint the sooner you give it up the better - much easier for your child to eat something different at a party if they never got used to the pizza & cake routine in the first place. And most kids are perfectly happy as long as you provide an alternative treat - we keep a container of fluten free cupcakes inthe freezer at all times so I can just grab one on the way to any birthday party.

But take things one step at a time, and give yourself time to emotionally process this. While a celiac can be completely healthy on a GF diet, making a big dietary change like that is a major undertaking.

Anonymous wrote:My DD was diagnosed at 4. The hardest part about celiac disease is the " hidden" damage that is done to the intenstines when the person eats gluten. I recommend the celiac center through the University of MD. They were incredible and they had a great team approach. The main doctor is the biggest researcher on the disease in the country. The drive was not great but its worth the once a year drive to work with the most knowledgeable team and have access to the most cutting edge research.

Sadly the Center for Celiac Research is no longer at Maryland. It and Dr. Fasano have moved to Mass General in Boston. Your best bet in the area is to go to Children's Hospital.

My DD was diagnosed at 4. The hardest part about celiac disease is the " hidden" damage that is done to the intenstines when the person eats gluten. I recommend the celiac center through the University of MD. They were incredible and they had a great team approach. The main doctor is the biggest researcher on the disease in the country. The drive was not great but its worth the once a year drive to work with the most knowledgeable team and have access to the most cutting edge research.

I was trying to read the difference between wheat allergy and celiac-i just get more confused! Thanks for the simple explanation. Oh yeah, he's half Asian and half European descent, so, I guess that's why we find it a surprise. No thyroid, no celiac, no type 1 diabetes in the family. Anemic, yes.

To answer the health question:
Overall, my son's health is I would say normal, as I see it. He's always been in the 95% for height and weight, yet lean and tall for his age but always had a belly. Both parents are on the lean side. He's always eaten anything we've given him with the exception of leafy greens. He's engaging but with adults more, very verbal, asks questions about gluten, silly but stubborn, must have his ways. Sports? likes riding tricycle and balance bike. Sometimes todder soccer. We take hikes in the woods sometimes. He walks on his own, uphill, downhill. Lately, it's jumping, and leaping off couches, beds, steps, anything elevated.
Whiney and clingy-can't tell if he's tired or just a normal toddler phase. He gets stomach aches 3-4 times a year but I can't tell if it's stomach virus, bug, or dirty hands. These usually lasts 4-5 days with vomiting in the 1st day-hard to tell. Does he thrive in preschool? He has been able to pick up recognizing letters and numbers in matters of weeks after joining his class. He's the youngest in class, others are 4-5. Does he engage with other kids? Sometimes but not often enough but I'm not sure if it's cause he's the youngest or stubborn or tired or socially slow at adapting to the environment with alot of kids.

I can't speak to much of your concerns, other than that of social acceptance. From what I see, the kids are accepting. It's other parents who are not. Here's a good article about exactly that:

http://www.huffingtonpost.com/carissa-k/what-its-like-to-be-an-al_b_3143696.html

a wheat allergy is very different from celiac disease. Wheat allergy is a histamine reaction and celiac disease is an autoimmune response to gluten.

You have to completely eliminate gluten from the diet so that the body does not produce antibodies to it. The body has to work much harder when it's fighting gluten so it's best to eliminate it. Other health problems can come from it too like other autoimmune diseases.

How is your son's health in general?

I have celiac as well as my son and some times it is hard, but most of the time it is not so bad. There are so many more options now and more people know about it and understand it and accept it. And i too keep frozen cupcakes and treats on hand for parties. I leave some at his preschool too. And my son has learned to ask if something has gluten in it.

We were thrown into the world of food allergies almost 3 years ago (dairy, soy, and eggs). Our child did need an endoscopy to rule out another condition, which I wasn't super excited about (for obvious reasons!), but the entire procedure probably only 15min total, which includes us being called back to recovery.
Your child will read his cues from you - we just don't make a big deal out of it. I have a stash of "safe" cupcakes and pizza (wrapped in individual serving sizes) in the freezer along so I'm ready for last minute parties or special events. He brings his own lunch, snacks, and milk to daycare. I try to match his lunch to what the other kids are having, but it doesn't always happen. The teachers know to give us a heads-up if there's a birthday or other special event where the kids are getting a "special" snack so that I can send in something for him. We also keep a container of safe snacks in his classroom and refill as needed. He never feels left out - he will ask if something has cow's milk or soy if there's food at a party he can't have. He knows it will make him sick if he eats something that contains one of the things he's allergic to.
I don't make anything at home that he can't eat as a main meal. If we're all eating together, it's safe for him. I've found (with a few exceptions) that it's just easier for us to only keep foods in the house/make food he can eat. This way there's no confusion, especially when leftovers are in the fridge! There are a lot of gluten free products in stores as well as blogs devoted to gluten-free cooking and baking. I know it seems a little daunting at first, but it does get easier

My daughter had a wheat allergy diagnosed very early on (noticed hives when we gave pureed baby food with wheat). She is 2 now and still allergic according to her skin test as well as blood work, but can tolerate small amounts. Before she would break out in hives even from skin contact. I think this allergy is commonly outgrown. Son had it as well (blood work still shows it) but he pretty much outgrew wheat allergy at 15-16 months. I still notice hives on my daughter when she eats bread, so I may take her off wheat again.

My son was also diagnosed at age 3. Our child has an older brother with asthma who used a nebulizer fairly often. So we told our child he was going to the hospital for a special nebulizer treatment. He was happy to let the doctor put the mask over his nose and mouth. He did great - I was a little freaked out when he went under though. The procedure only took about 20 minutes and it was fine. Ours was done at Fairfax.

My son is 3 and recently had two blood tests done and results show positive signs of celiac. So, I read, this means he has the potential of getting celiac. The next step the doctor suggested is a endoscopy to see if gluten has made any damages to his intestines. Before, I've never even heard of celiac. My side of the family doesn't have much allergies or not that we know of. However, our offspring's generation seem to have alot of allergies of some sort these days, so, I'm not entirely surprised.
Since founding out about the blood test results, we have cut wheat out of his breakfast and dinners. Lunch in preschool is whatever they serve on the menu so I know what they eat each day. I have mentioned this gluten allergy to the preschool staff but we have not entirely cut wheat out of his diet. But, he himself has said that he doesn't eat the bread they serve at lunch because they have gluten. Before, he loved bread. He at least says no to bread but not everything wheat of course.

Symptoms? After many questions, the doctor says he doesn't seem to show alot of physical signs of celiac. The family side? We are not aware if we have any allergies.

My concerns are of course the procedure of a endoscopy. Even though the doctor explains it to us, as a parent, we worry. We worry about if he's allergic to the anesthetic, and anything else they use during the procedure. We worry about if this is even a necessary procedure on a 3 year old. It seem rather early, then again, better early than never, I guess. Our other concerns are really related to the social 'acceptance' of being gluten free. These days, it's hard for kids to be accepted and with food restrictions, it's almost like he can't eat what others will eat. How left out would one feel if all the kids are eating pasta and pizza and he has to bring his own set of food and cupcakes to parties.
I guess the part of a strict diet is new to us. We've never put a restriction to the type of food we eat. We eat all types of food (except fried and high fat food).

Has anyone's child been diagnosed with celiac or some type of wheat allergy and at what age? And if you chose the endoscopy, how did it go?
Has anyone seen or had a endoscopy done by Dr. Judith Sondheimer at Georgetown Univ Hospital ? i would like some feedback.
Has anyone just skipped the recommended endoscopy? and went straight to a gluten free diet?
And if he does one now, will he need to do one in his teens or as adult?

Thank you for any comments or insights.