Opinions Please

[averyevansmom]

My son, who will be 3 on the 16th, has had GI problems since birth. First reflux. He would also get excema which would get infected and turn into impetigo. He would get nasty bloody rashes on his bum. He was a miserable baby the first 6 months, by then I decided he probably had food intolerances (I nursed) so I cut out dairy, corn and a few other things I can't remember, oh, tomato sauce definately. At 9 months he was tested for Hirschprung's Disease which came back negative thankfully. He has never been on regular milk, only soy, and has never had a formed bowel movement. He's either constipated or has diarreah. It stinks like nothing I've ever smelled before. Sorry! He has also on many occasions has sandy stools and what looks like bits of food in his poop. I feel so bad for this little guy. He suffers so much. He grabs at his belly on occasion and we know his bowel is impacted with stool. He had blood work done on Tuesday by the Pedi GI and is severely anemic (level should be between 49 and 180, his was 8) his sed rate was more than triple what it should be and we are still waiting for the celiac test to come back. Doc said we will be scheduling a scope as soon as blood results are back. Probably by Monday. I guess my question is, is it possible to be positive for celiac disease and not have reactions like most folks other than those listed above? His excema seems to have gone away. I would rather it be celiac as opposed to something much more serious like Chron's. I'm willing to struggle with the dietary changes.

Thanks for all the input.

Becky

[jen3899]

It sounds to me like he is having typical reactions! All you can do now since you are waiting for tests is WAIT, you can not change his diet before the scope or blood tests or they will not be right. But after you get the test results, pos or neg, I would put him on a natural Gluten-free diet, just fresh meats and veggies, no pre-packaged snacks or anything, all the meals will need to be made from scratch, so you know EVERYTHING that is in them. That is the quickest way to see if it will make a difference. I wish you the best of luck and hope you post again with the results.

-jennifer

jen3899@yahoo.com

[averyevansmom]

It sounds to me like he is having typical reactions! All you can do now since you are waiting for tests is WAIT, you can not change his diet before the scope or blood tests or they will not be right. But after you get the test results, pos or neg, I would put him on a natural Gluten-free diet, just fresh meats and veggies, no pre-packaged snacks or anything, all the meals will need to be made from scratch, so you know EVERYTHING that is in them. That is the quickest way to see if it will make a difference. I wish you the best of luck and hope you post again with the results.

-jennifer

jen3899@yahoo.com

Thank you Jen,

Going from Goldfish and all those other "goodies" in his eyes, to the gluten-free diet will be the toughest part. Is 3 years old too young to have much damage done to the intestinal tract?

[jen3899]

I think right now you should worrie more about him growing, Is he small for his age?

[averyevansmom]

I think right now you should worrie more about him growing, Is he small for his age?

No, actually, he's right where he should be. Thankfully. We tell him he's got a big buddah belly but I think it might be from the impaction.

[taweavmo3]

Hope you find your answers soon.....and I would definately try the diet after his scope, whatever the results are. Three years old is not too young for significant damage, my daughter had total blunting of the villi, and her small intestine was inflamed. So, it does happen.

I think your son is at a very good age to start the diet, he won't remember what he's missing. My little girl accepted the changes pretty easily, I'm the one who had a hard time adjusting! The only hard part for her is when she sees other kids having something that she can't, but I try to be prepared with a sweet treat that she can eat. There is a huge list of candy that is safe, which has been a real blessing for us. When I'm in a bind, I can always run into the store and grab a bag of Skittles or something if we are going somewhere that is going to have cake or cookies. It's not the most healthy, but at least she doesn't feel deprived of a treat that the other kids are having. I think not feeling left out or deprived is important in order to help kids accept, and not resent, the diet.

It will be hard in the beginning...but in time, it gets so much easier. And the benefits and changes you will see in your son far outweigh any challenges you face along the way! My family still make comments on how much Emmie has changed, and it's been eight months. Good luck with everything, and keep us posted.

[lonewolf]

He has never been on regular milk, only soy, and has never had a formed bowel movement.

Are you sure he's not reacting to soy? It is a very common allergan. I am horribly allergic to it and have much bigger reactions to it than to gluten. It can be very hard to digest. It's also very high in phytoestrogens, which may be good for women who need to balance their hormones, but not the best choice for little boys. There is some interesting information about soy here: Open Original Shared Link

Liz

[Kasey'sMom]

Hi, averyevansmom's

My dd is 3 1/2 and we had her tested when she was 2 1/2. She like your son had reflux. She also cried a lot as a young baby. I nursed her and she was a premie but we never had failure to growth either. She did however start having eczema and allergic symptoms when shortly after her 2nd birthday. She would get terrible diaper rash that would turn into open sores. She suffered from both constipation/diah and gas.

You're so blessed to have a Dr. that is looking for celiac disease. The symptoms are very widespread for celiac disease. I was tested a few months after my dd was and I tested positive as well. Unfortunately my dd Dr.'s didn't look for celiac disease for several months and I didn't know much about it either. The positive part of her situation is that we discovered she has food allergies as well as celiac disease.

Now that we're gluten-free our family is much happier!!

I know that it's hard to think of making these dietary adjustments but my dd has really done well. She was LOVED gluten filled crackers and bread. Now that she's gluten-free she still likes her carbs but she's not addicted.

I'll say a prayer that you find the answers the need.

[Guest nini]

there are so many different symptoms of celiac that it can manifest itself in so many ways. The symptoms you describe are exactly like the ones my daughter had. I had already been positively dx with Celiac, so when her GI Dr. refused to do the complete panel and her blood results were inconclusive, her Ped. and I decided to try the Gluten Free diet... it was a miraculous change in her almost immediately. She was 3 at the time and has adjusted very well to the diet. She gets so excited when I find new treats that are safe for her to have. There are a lot of kid snacks that are naturally gluten free, raisins, fruit cups, bananas, apples, applesauce, Fritos, Cheetos, Lay's Stax, cheese sticks, etc... We like the Envirokids cereals as a treat or snack (I put a small amt. in a sandwich baggie) Also, EnerG makes great gluten-free pretzels that are yummy for kids and not too terribly pricey either. I've been able to find them at Kroger...

[VydorScope]

My son had alot of the reactions you list, daiper rash(so bad at times it would bleed... 5 to 7 cases of d a day, reflux, breastfeed, etc etc. Even tired the soy route.

He is also not small, actully BIG for his age. Very big, at one point was 105th precentile on the growth chart. DX'd at 18mos old.

So not much dif case then yours, there are couple things I need to warn you about that I did not see mentioned yet..

1) If you got the full celiac disease Blood test panel (please please dont tell me they did not do at least 3 or 4 of the tests!!), it will probalby show a weak postive at best, if that.

2) Endoscope is a good idea, but will not likly show celiac disease even if postive.

The reason for those is that your child is so young. Not much in the way of damage is done yet, and babies healing rates is phemonial, almost to the point of regeneration. This is a very very good time to learn about celiac disease in your child becuase they will spring back at speeds us adults can not even dream of! I noticed improvements with my son with ing DAYS of gluten-free diet, took longer for full recovery of course.

Listen your doc's directions, but I would definitly suggest try the diet, reguardless of test results. I am not a doctor, just a parent with celiac disease and a toddler with celiac disease, so keep that in mind, but I do think that you should try the diet reguardless, as it will be the best indicator in a child so yong, IMO.

And watch your childs wieght/grow. It should follow the normal curve. Ask his peditrion to show you his growth chart. Reguardless where he is on it, at each check point it should follow the basic shape of the charts curve. Any deviation from that needs to be discussed.

[averyevansmom]

Everyone, Thank you all so much for all for themuch needed information. I have never been tested for celiac. My son's pedi GI has only run 2 tests. I'm not quite sure which one's. My son has always been a healthy size as well. He was just about 5 week premature and weighed 7lbs 8 ozs. Thank god he came out when he did. When he was very young and I nursed I couldn't get passed the taste of say milk so I opted for rice milk, which I never really drank per say, but used in cereals, etc, and he did quite well. Not often, because I was afraid of the binding qualities. I never used rice cereal, always oat or barley, hence excema and bloody rashes were still prevalent. I felt so bad for this little creature. He was so beautiful, yet so miserable. It broke my heart to see him in so much pain all the time. Now he's on high doses of iron supplements and it literally makes him sick. He cries out at night and whimpers. He's on 30mls 2x daily. Now his stool is black and tarry, which I'm sure isn't helping his obstruction. He takes a full dose of miralax every day as well. He's a little train wreck. Does anyone know if celiac has anything to do with a high sed rate. I'm wondering because if because it's an autoimmune disease if it would be connected?

Thanks again.

Becky

[Ursa Major]

Hi, I want to add that when I was so ill all summer, I couldn't tolerate ANY supplements at all, not even liquid vitamins. They made the diarrhea and stomach cramps worse, and went right through me anyway, without doing any good.

So, the high iron supplementation may do more harm than good. The only helpful way right now would be bypassing the stomach and bowels and giving iron injections (or giving it intravenously, which is the way they always do it in Germany). My ferretin count was down to 4 five years ago, and regular iron supplements made me awfully ill, and didn't help much at all, because my body couldn't digest them. I had to have iron injections, which helped somewhat (I didn't know I have Celiac disease then).

And when I read your son's reaction to the iron, it appears to make him more ill. But he absolutely needs to get iron. I am afraid you will have to go the injection route for now. And his diet needs to be changed asap!