Newbie, Toddler Might Have Celiac, Help!

[hmseyer21]

Okay so I've been browsing around here for a while and thought I'd post what has been going on with my sweet DS lately. Warning, this will be lengthy because there is a lot of issues.

DS is almost 2, but I'll start from the beginning:

He was born with 3 heart defects, numerous spine defects, a mild cleft palate, torticollis, mild hearing loss in the right ear, has asotrophia(crossed right eye). So basically he's had his share of health issues, to give you a brief introduction...now onto why I'm here.

Because of his cleft palate, he never latched, and we breastfed for only 2 months via me pumping the milk. He was very colicky, and had major gut issues from about 2 weeks. He has always been very gassy often waking at night with a really tight stomach and simethicone drops help a little. Once we started him on regular formula he projectile vomitted, so we switched to soy, which consitpated him and he didn't drink it well. Then we tried nutramagen, he refused it. So eventually Similac Lactose Free was the only thing he did well on, so we thought he may have lactose sensitivity, which I have as well. He took formula until he was 15 months because he was so small and needed the calories until he began eating more foods. We tried organic whole milk which I began noticing made him poop immediately and it was always weird pasty poop. So we switched him to rice milk, he did good, and is still taking it.

He has always been small. He dropped from about 25% to below 3% in the course of the two years since he's been born. He has super skinny legs and arms, and a bulging belly, but it hasn't always been as bad as since his recent issue with a stomach virus...

Which brings us to now. For the first three weeks of this month, he had a horrible stomach virus. He had horrible smelling runny stools, mucousy and pale yellow, with a few darker ones here and there. He vomitted off and on the whole 3 weeks. He would wake up in the middle of the night most times and vomitt 3-4 times, and then go back to sleep. Then every morning he would wake with an awful diaper, usually exploding. He was lethargic, irritable, his stomach was hard and swollen and he broke out in a rash that was very red around the belly button and spread out across his upper abdomen and inner thighs. He did get diaper rash somewhat, but it wasn't as bad as usual when he gets diarrhea. He did have a really low grade fever off and on too. He wanted to eat unless he was having a really bad vomitting day, and acted like he was starving. His weight was 19 pounds when we reached the 3 week mark when the virus started getting better. He had a little over 21 pounds before he got sick. So he is VERY small, and we have been concerned about this for a year and a half.

We've taken him to a nutritionist twice, who suggested beefing up his calories....well that didn't work. We began giving him a good multivitamin with B vitamins to stimulate the appetite, and it seemed to work, because he eats really good, often shoving food in his mouth like he's starving. He loves breads and cheese products. He always wakes up like he's super thirsty also, drinking a ton of whatever I first offer him.

So during this 3 week period, I had gotten FED up with everyone just pushing his low weight aside and saying to give him more calories. He was losing weight and I was freaking out! I took him to his usual pediatrician after 2 weeks, and he did stool studies for white cell count, rotavirus, parasites, and bacteria, everything was fine. So then I kept calling and voicing my concern to the nurse, because the ped. wouldn't call me back personally, and she said to bring him in for a recheck tomorrow, but that he wouldn't be in, so we'd have to see another ped., so I'm sure he was pushing us off onto another doctor, but I was happy to get a new opinion. FINALLY this doctor saw the same concerns we did!! He said he wanted to send him to a gastroenerologist for further evaluation. He looked at a whole body approach and said he wanted to do blood work to get started. So he tested for lead(we requested that because of the recent toy scares), thyroid problems, and a few other things I can't remember. Then we went to the gastro. this past Thursday and he was too very concerned and said DS showed symptoms of malabsorption problems, and suggested possibly celiac disease. After researching this disease, he does have many symptoms!

So here is what is going on now: the gastro. ordered more stool studies which are being done already, and wants to schedule him for an endscopy, sweat test,(for cystic fibrosis, which he's genetically tested for and mine and DH's genetic test didn't show anything either), and more blood work. So should I automatically have the endoscopy done? He had 2 hernias repaired in June and had a reaction to anesthesia and developed pneumonia and was hospitalized, so naturally I'm scared to have him put under. He also has 2 heart defects that haven't closed, they are not major in everyday life, but in surgery he has to have antibiotics to keep the heart from getting infected, so there is always that risk in my mind. So my initial thought and I did ask the doctor this was, "why not start out with bloodwork to test for malabsorption issues and then go from there?" He said he wanted to do it all, and reassured me that the hospital was able to handle any emergencies. He is going to have it done at a different hospital than all his other specialists and procedures, which is a children's hospital. This is not a children's hospital, but he IS a pediatric gastroenerologist and has done this a lot. But still, DS has SO many other issues to consider than the "average" child.

Okay, so now that I think I've gotten everything I can think of written, any advice, suggestions, etc.?? I am really overwhelmed at what I should do, especially about the endoscopy. I know it's a short procedure, and there are some risks, but at the same time, DS's past problem with anesthesia and heart defects, makes me really consider whether a procedure is absolutely necessary. I know he has so many symptoms of celiac disease, and I know we need to get him tested, and I also know it can be detected through bloodwork, but because of the severity of the situation, is the endoscopy going to be the best thing to do?? Part of me thinks it is a wise decision, but there is this other part of me that doesn't have peace about it, and I'm not sure if that's my motherly instinct or the fear any mother has when her baby will be put to sleep. Thank you for taking the time to read this post and for any advice you may have.

[Lisa]

I am so sorry that you have had so many mountains to climb during his short life.

May symptoms that you mentioned, can be associated with Celiac, bloated belly, small limbs, etc. You can demand that you doctor do a full Celiac blood test, although they are not always reliable, especially in small children.

You can try the diet for a month and see if his discomfort subsides. A positive dietary response is a diagnosis in itself.

I do hope that you get the answers soon.

[Ridgewalker]

I don't blame you for being reluctant to do anything with anesthesia unless absolutely necessary. It sounds like you have a lot of issues you have to keep in mind when you make decisions about your son!

I agree with Momma Goose, have the Celiac panel done, and go from there. As she said, though- there is a significant occurance of false negatives, especially in young children.

I really like the option of a trial gluten-free diet in most cases... the thing is that it does take time for the diet to show results. If you wait to do any more testing until the diet proves out (or not,) it might be awhile. As sick as he is, and with that incredibly low weight, you may want a definitive answer as soon as possible.

On the other hand, even if you go ahead and do the scope and biopsy, Celiac can still be missed. Damage from Celiac takes time to develop visibly, and also it's patchy- multiple samples must be taken in order to "catch" the damaged villi, if it's there.

Have they done a blood sugar test? The intense thirstyness made me think of that.

I have never heard of a three-week stomach virus. Even the Norwalk Virus (Norovirus) doesn't last that long. And the rash is worrisome.

BTW, my younger son has had the wickedest diaper rashes that tended to turn into open sores, and I'll tell you-- the absolute best things are Aveeno Bath Powder and Aveeno Diaper Cream. Nothing I've found works better. If the rash does open, a doctor needs to see it because that often indicates a yeast infection and will require a prescriptive ointment.

I hope you stick around. This is the absolute best place to get good real-world information!

-Sarah

[gfpaperdoll]

Oh My, I so feel for you. Having a child with health issues is so painful to a mom... not to count getting your med degree the hard way...

Here is my advice - first trust your mom instinct, your child is in no shape to get anesthesia...

get the blood tests run - print them out from here - there are five of them - & make sure the doc runs them all...

skip the endoscopy, your child will blossom on the gluten-free diet - which you need to start today... well technically it is supposed to be diet after the blood test - but if I were you I would not wait... also you need to not feed him any dairy...because of the casein - not just lactose...

get some books & read up on celiac - like Dangerous Grains

just spend the $369.00 to get your son tested thru enterolab.com - they will mail you the kit.

get yourself tested also - enterolab.com tests for the gluten intolerant genes as well as the celiac genes. either one is the same thing - you cannot eat gluten.

I do not remember the exact percentage but I think it is from 50% to 75% of the people that are lactose intolerant has a gluten problem.

getting a new pedi for that visit probably saved your sons life. keep giving him the B6 & also start him on B12... Good for you for checking it out...

wishing you the best... keep us posted on your progress & do not get overwhelmed, we will help you with any questions etc etc etc....

[April in KC]

Oh, poor little man. I just want him to be well - all kids deserve that. It does sound like he is having some type of malabsorption problem. There are many possible causes, and Celiac is one.

It's a decision you have to make about the endoscopy. I can see pros and cons, and I will tell you about a couple of testing options.

Pros: You'll get "a look" inside, which can help reassure you that there are not other problems going on as well. If they are able to make a positive diagnosis, there will be a certainty in that that should last his whole life long.

Cons: You have already listed some cons - another is that the small intestinal tract is very long, and the procedure does not visualize all of it. So you can do the procedure and have biopsies come back negative, and still have Celiac Disease.

Some things to consider.

You can ask for a full Celiac Disease panel of blood tests. This should include:

Antigliadin antibodies, IgA

Antigliadin antibodies, IgG

Tissue Transglutaminase (TTG)

Endomysial Antibodies (EMA)

Some docs think you don't have Celiac if you don't have a positive EMA, but this just isn't right. It's potentially significant if any of these are positive. I have Celiac Disease as an adult, and only one of these (the antigliadin IgA) came back positive. But in my case, that one positive result coupled with a certain skin rash that 10% of Celiacs get was enough to convince my GI that I have Celiac disease. Plus there were the mouth sores, the miscarriages, the sudden 20-lb. weight loss, etc.

Really, a positive result is a very nice clear sign from the universe - something a parent can really hang their hat on, you know? Be aware that a percentage (some say up to 20%) of Celiac Disease sufferers have an overal deficiency of IgA type antibodies in the blood. This can cause some of the above tests to yield a false negative. Also, some young children have begun the process of developing Celiac Disease, but they do not yet have antibodies freely circulating in their blood. My 6-year-old, who had had symptoms for 3 years, had clear positives on all four of the blood tests when he was tested earlier this year. But my 3-year-old, who had had symptoms for only 6 months, did not have any positives. We still believe he has Celiac Disease, mostly based on our gut instincts after watching his symptom progression that matched his brother's. But we also had the gene test (see below), and he DOES carry the genes that make it possible to have Celiac Disease.

Genetic testing:

99% of people with Celiac Disease have either HLA-DQ2 or HLA-DQ8 genes. You can look up "HLA-DQ2" on Wikipedia.com if you want more information. There are I think 9 possible HLA types in humans. Having one of the Celiac types does not mean that a person has Celiac disease, but at least it puts them in the right ballpark. You could ask your doc to do the gene test for Celiac prior to doing the biopsy. If your son has HLA-DQ2 (most common in North America) or HLA-DQ8, then it might give you more reason to think "Celiac." Your doc should be able to order the test, but they might have to look it up. It might be called something like Celiac Disease Gene Test.

You can also order the same genetic test privately (i.e. not covered by insurance) through a company called Enterolab. It costs about $100. It's a painless cheek swab. www.enterolab.com

Stool testing:

This area of stool testing is a bit more controversial, but the physician at Enterolab believes that testing stool samples for gluten/gliadin antibodies has value. This method is not proven (peer reviewed results in literature) yet, and as a result is not covered by insurance. But we did this test for our three year old and it came back strongly positive. I suggest reading up on it before spending your own money on it. We decided it has value, but we don't treat it with the same degree of confidence as blood testing or biopsy until it is published in medical journals.

Good luck.

Keep looking at Celiac Disease and many other malabsorption syndromes. I'm glad you asked for the lead testing as well. Unfortunately, there are many things with similar symptoms. You might just have to go down the list and keep crossing things off until you find out what it is.

I really feel for you as you search for answers. We went too long without answers.

April

[hmseyer21]

Wow, thank you SO much for all that great information. DH was stunned when he saw the detailed responses, but I told him, when you've been through something tough, you just try to help others so that maybe it makes their coping process easier. I really appreciate your help.

So last night, being the avid researcher I am, I came across more astonishing facts. I found a drawing of a little boy who had celiac and it looked IDENTICAL to my DS, it made me cry. Here it is:

www.childclinic.net/pain/celiac_img2.webp

Then I found a website that mentioned miscarriage and birth defects could be related to mothers with Celiac...I have experienced both. I have hypothyroidism. lactose sensitivity, and when I think back to all my childhood photos, I always wondered why I was so skinny with this crazy poochy belly!! So maybe I have it too, and it caused DS's heart and spine defects and my miscarriage this year. I'm usually constipated or loose stools, never normal, and was hospitalized with a hemorraging stomach when I was 17 and they never knew why. I am so consumed by all of this, it makes sense to me, I just hope this is the answer, even though I don't want to have to live with the disease, I have searched for answers for so long. Here is that website:

Open Original Shared Link

We are dealing with trying to get his bloodwork done asap. The doctors want faxes of the gastro's recommendations, and we have to sign a release...blah blah blah. So I'm already seeing how annoying this is going to be! If he has this, I want to know asap, because he needs to start his gluten free diet, and so do I, DH said no matter what we are going to do this as a family, at least for a while, to see if it helps us all.

Thank you again for your help, I know I'll be back, I have a feeling this is just the beginning.

[Truleesmom]

Hi, I am brand new to this forum, this site, and to Celiac's. I so completely feel for you and your family! Just found out that my 2 1/2 year old daughter may have Celiac. Though she hasn't been through near the problems that your son has, she has had her share and I am completely freaked out about having her sedated with general anethesia. She's been under twice and did not have any problems, but there's always a first for everything. Yes, I am a complete worry wart when it comes to these things! A little history - she had a rare condition that she had to undergo very invasive surgery for. She had what is called a Choledochal Cyst, its a congenital anomaly near the liver and biliary tree. She had to have her gallbladder removed, her liver biopsied, and a Roux-en-y, (which is like a bile reconstruction). All of this was done when she was only 5 months old! She never showed any symptoms - they just happened to see a tiny cyst, (near what they at first thought was her kidneys) in a pre-natal ultrasound. She's been fine and well at every check up since then - now come to find out after our last set of tests -- she may have Celiac Disease. Her GI doc put her through a barrage of tests when I told him that she once complained of stomach pain. She's also had loose stools most of her life - but we were told she could have that until she's 3yrs old because of her surgery. Her stools have actually become much firmer in the last few months. From what I've been able to decipher the only test that she had that points to Celiac's is Anti-Human Tissue Transglutaminase IgA -- and from what I can decipher again, I think her score was >100.0 u/ml and I think the range is >4.0 u/ml. I'm currently waiting for my pediatrician to call me so he can go over these lab results in plain english with me. The GI doc is not so good at that! The GI doc is recommending an immediate endoscopy and biopsy. VERY IMPORTANT: She does not have ANY symptoms of Celiac. She has always thrived since day one. She is off the charts in weight and height. The only thing was once or twice she complained of stomach pain, but she always points to her upper right quadrant which is where her incision from the choledochal removal is located and she had low iron, but that seems to have leveled out. Am I crazy to think that this GI doc is crazy for thinking she has Celiac from just this one test, being that she is completely asymptomatic????? Sorry so much info -- and I guess I really should have started my own post. Thanks!

[Nikki'smom]

hmseyer21,

Oh my your poor little guy!!!!! All these other more experience mom have given you some great advice. Since you son has had problems with anisthesia maybe he is allergic. I know Melignat Hypothermia runs in my family and it is basically an allergy to anistesia so when my kids have had to have it they take all of these extra percausition.s They flush the room and the machices out with oxygen and use iv anisthesia (a certain kind). Maybe if he does have to go under again talk to the dr about preparing for it like they would for melignate hypothermia?

I say DEF get all the blood work done before you go for the scope. IMO If all the blood work comes back positive for Celiac then cross the scope bridge so to speak.

I am very glad you found a dr that seems to want to take action and help your little guy!

Truleesmom, My DD is very asymptomatic with her Celiac. The big clue for me was when I read about the teeth discoloration. She does get tummy aches but not as many as alot of other celiac people. If the dr has run all the blood tests and she tested positive for it you may want to consider a endoscopy to have it def confirmed. That is what we did. To be honest I was shocked my DD's blood work came back as positive as it did! The scope just confirmed it.

Good luck to both of you and Welcome!

[hmseyer21]

Nikki'smom: MH runs in my family too and I suspect that's what happened. They were supposed to have done the precautions, but I wonder if they did? I totally stress it at least 10 times before any anesthesia because my grandpa almost died from a reaction. So knowing that he probably has it too, I am going to say it at least 20 times from now on. Part of me thinks they didn't do everything they were supposed to, but I may be wrong. I should get a copy of the report and see what they used.

Trulee's mom: I'm sorry your little girl has gone through so much too. It's sad when they have to face so many obstacles as babies. I don't really have any advice since I don't know a whole lot about this either, but I hope you find your answers too. I'm still nervous about the endoscopy, but I think it might be a good decision since he could have other issues as well that an endoscopy could show. After talking to the GI I see his point on why the procedure is so important. I want my son to be helped as much as possible, so I will just have to pray for my peace of mind and his safety and trust God to protect him during the 15 minutes he's sedated. I don't want to put him through anything, but sometimes we have to make that decision for their benefit. This is one of those times for me, but I think everyone has to weigh out the benefits and risks for their own situation. Good luck with your decision, it's so hard to know the right thing to do.

Oh and I had bloodwork today, but didn't notice the doctor only ordered the IgA(I think). BOO! I told him I wanted a full panel. Doctors are really getting on my nerves lately!

[Nikki'smom]

GOd I hope youa re worng and they didn't mess up and not take the percautions! I actually had a fight with the anisthesiologist right before my DD's scope because he didn't think it was neccessary to take the percautions and we should ahve ran the muscle biopsy and I freaked out on him! Muscle biposys aren't always acurate. UGH Let me just say i am sure I wasn't his fav person that day but frankly I did not care as long as they did the right thing by my kid. When my DS had his tonsils out the hospital was GREAT they did everything no questions asked. UGH I think some drs are just lazy! The other bonus to having them prepare is that my kids ahd to be the 1st of the day so the room didn't get infected for lake of a better word. LOL

[hmseyer21]

GOd I hope youa re worng and they didn't mess up and not take the percautions! I actually had a fight with the anisthesiologist right before my DD's scope because he didn't think it was neccessary to take the percautions and we should ahve ran the muscle biopsy and I freaked out on him! Muscle biposys aren't always acurate. UGH Let me just say i am sure I wasn't his fav person that day but frankly I did not care as long as they did the right thing by my kid. When my DS had his tonsils out the hospital was GREAT they did everything no questions asked. UGH I think some drs are just lazy! The other bonus to having them prepare is that my kids ahd to be the 1st of the day so the room didn't get infected for lake of a better word. LOL

He has had anesthesia 4 times, and had a small reaction the first and last times, which were when he was sedated for a long period of time. The other procedures were shorter so he did okay. The first one he woke up congested but it went away fairly quickly and the last time, he was delirious, spiked a fever and developed pneumonia. It just seemed like the anest. didn't really take it seriously because it was DS's great grandpa and great aunt. He was first on every surgery because of the risk, so maybe they did do what they were supposed to, it's just strange that if they did, why did he have the reaction? We are going to be at a different hospital this time, so I hope they are compliant or I'll refuse the procedure. Even after stressing the family history, the first 2 surgeries they acted like they didn't know when we got there, so we had to wait 2 hours for them to clear the room! That's what makes me wonder how seriously they take it, so I also learned that you have to always assume they know nothing! I really have been fed up with doctors lately, I am going to be one of those moms who they dread seeing, but it's their own faults for being so arrogant and not listening to mothers who know what they are talking about! I'm getting mad just thinking about it,

[rock on]

I'm sorry that you're going through such a rough time with your baby. I don't have any recommendations for you as I myself don't have any children, but we have a nephew who just went through something very similar as your boy. I think hearing that someone has gone through what you're going through could help. ...

He was really sickly and nobody knew why. His parents kept insisting with their doctors that something wasn't right. He was 20 months when he was finally dx with Celiac....but before that his parents were in the same boat as you. Our nephew had horrible diarrhea...just like you described. He also ended up on lactose free similac. He was lethargic, wasn't gaining weight, wasn't responding to anyone, very clingy to his parents though, distended belly, shoulder blades sticking out....he looked like one of those poor babies you see on late night tv suffering from starvation. at one point, he could hardly hold his own head up. He was basically failing to thrive. His bloodwork came back positive for Celiac. But, the doctors told his parents that the biopsy was the gold standard for dx-ing Celiac & that it had to be done because he was so young & they wanted to know if he truly suffered from Celiac. Well, they did the biopsy as quickly as they could so that they could begin the diet. (he didn't have the other complications that your poor guy has)

They put him on the diet and it took about 3 weeks before they began to see any changes. So, whatever you decide for your boy, biopsy or not, know that it could take a stretch of time before he starts to show any signs of recovery. Just putting him on the diet won't make all his symptoms go away overnight. His little tummy needs to heal. But, if it is Celiac (which it reallly seems like from your descriptions), know that he will improve on the diet. Our nephew's doctors said that it would take at least a year before his gut is healed. He is now about 2 1/2 & is doing soooo well & continues to do better & better. He is like a little boy should be...curious, running around, and happy.

I'll keep you and your little guy in my thoughts.

Keep your chin up.

[Nikki'smom]

hmseyer21,

If you do decide to do the scope maybe you should request a meeting with the head of anisthesialogy? Explain everything many times and make that person 'get it' if at all possible. Youa re your childs advocate and he has already had issues with anisthesia so any respecatble dr should be good about it imo!

Good luck and try not to stress to much about it.

[hmseyer21]

Thanks so much for the advice. The doctor's office called today but didn't leave a message, I saw the caller ID, so I'm hoping they have a date set up for him. I feel like the endoscopy is a good idea and will most definitely stress my concerns to everyone involved until they get it.

He's actually doing really good lately, eating like a little pig and seems to be gaining back some of the weight he lost. So I feel okay with being patient, since he is eating well and not vomitting. He is however, having several poopy diapers, especially after meals.

I found out today that I'm pregnant! I'm really excited and scared at the same time. It hasn't really sank in yet, because we've been trying for a few months and I wasn't expecting it. So I'm nervous that if I too have celiac that I have a messed up body. I am changing my diet immediately, so that I can prevent any possible problems. I left a detailed post in the pregnancy forum, so if you feel like you have advice for me, feel free to read and post there,

Thanks again for all your wonderful help!

[Truleesmom]

I just wanted to say CONGRATULATIONS on your pregnancy!!! That is great! Even more reason to not stress about your little man's upcoming endoscopy -- which I know that is completely calling the kettle black since I am still so nervous about my daughter's endoscopy. Which brings me to a question for you -- you have had more experience with anesthesia so.... Did they let you be with your son until he was completey under? The first time they sedated my daughter was for an MRI and they let us be with her until she was out. But then we had the surgery at a different hospital and they did not let us be with her. We are going to that same hospital again where they did not let us be with her -- and it is breaking my heart just thinking of her being surrounded by strangers and being so scared right before she goes to sleep and my husband and I are nowhere in her sight!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am literally screaming inside!!!!!!!!!!!!! I have got to quit freaking out -- especially while I should be just congratulating you! Congrats again on the pregnancy and best of luck!!!

[hmseyer21]

I just wanted to say CONGRATULATIONS on your pregnancy!!! That is great! Even more reason to not stress about your little man's upcoming endoscopy -- which I know that is completely calling the kettle black since I am still so nervous about my daughter's endoscopy. Which brings me to a question for you -- you have had more experience with anesthesia so.... Did they let you be with your son until he was completey under? The first time they sedated my daughter was for an MRI and they let us be with her until she was out. But then we had the surgery at a different hospital and they did not let us be with her. We are going to that same hospital again where they did not let us be with her -- and it is breaking my heart just thinking of her being surrounded by strangers and being so scared right before she goes to sleep and my husband and I are nowhere in her sight!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am literally screaming inside!!!!!!!!!!!!! I have got to quit freaking out -- especially while I should be just congratulating you! Congrats again on the pregnancy and best of luck!!!

No, they didn't let us go with him. I had the same thought that he would be like, why is mama letting them do this to me. I know it's hard. We did get to watch him once before they did a sedated MRI, but left during the procedure. It was scary how fast he went out. I understand your freaking out, I feel the same, but we have to remember we will get answers from this.

I am going to try to post a picture of Noah tonight after dinner to see if you agree that he looks like a typical celiac kid. I'll try but am new to posting pics here, so if it doesn't work, let me know how to fix it.

[hmseyer21]

The pic is under my profile, let me know what you think.

[Nikki'smom]

Congratulations!!!!!!!!!!!!!!!

You little guy is certainly a cutie!!!!!!!!! I can't say if he is a 'typical' celiac kid i am not sure what one should look like. LOL My DD is just ting for her age 48lbs at almost 8 but then again she has always been small.

I know what you guys are saying about being with the little ones when they get knocked out. My DD wasnted us with her so badly but we couldn't and she screamed the whole way to the room even her dr felt so bad he didn't know how to calm her. It broke my heart BUT I did know she needed this scope and in the end she would be back with me shortly and be fine. I had a harder time letting my DS go have his tonsils out because I knew he would come out in pain. With both kids they gave this loopy medicine as I call it to calm them donw/relax them before the procedure. With my DS it was so funny the things that came out of his mouth it relaxed us all because we were all laughing so much! With my DD they gave it to her and unfortunatly it didn;'t work! UGH.

[rock on]

The pic is under my profile, let me know what you think.

Congratulations!!!

As far as a 'typical' celiac child, I'm not sure...but he definitely looks like our nephew did before his dx of celiac. The distended belly with ribs sticking out, skinny arms and legs...I really hope all goes well for you. Like I said in my last post, our nephew has done phenomenally on his diet, his belly has gone down and he's full of energy.

Your little guy is certainly a cutie!!!

[mama2]

I feel for you and your little guy! I hope you get some answers soon. Good for you standing firm and letting your voice be heard! Best wishes.

I have been dealing with my DD doctors ever since I was diag w/ celiacs. I know first hand how frustrating it can be. I found wonderful support here.

[hmseyer21]

So I'm up to *here* with doctors. We are STILL waiting on a test date, and it's really annoying me. If he has this and we need to change his diet, then I want to know asap!! I'm so irritated, and newly pregnant, makes me feel like telling a few people what I think. lol

How long did it take you to get the endoscopy scheduled?

Part of me just wants to change his diet and say forget it, but that might not be the best thing to do...I don't know!