The GI just called and the results are in from my 4-month old ds scope from this past Wednesday. It looks like he has Celiac's disease:( My mind is still reeling, I need to do some research on this.

Anyone have experience with this? I know what it is and I am glad to have a bit of a diagnosis as I supspected wheat was a problem. He got wheat from me while I was bf (6 weeks) and then he has been getting oatmeal cereal (Beechnut has wheat) off and on since then (I thickened for a few weeks and then fed from spoon). Its funny, I stopped all oatmeal cereal a few days ago and in the last 2 days his formula intake has doubled! He was not getting a significant amount of cereal to decrease hunger, but apparently enough to make him feel awful! Poor thing!

Anyone else dealing with this? Any advice? Sorry if this is the wrong section for this question, I am new to this board. Thanks!

I'm going to leave your post here for the time-being, as I think it will get the most responses here.

My dd was 'scoped awhile back b/c her GI thought she showed strong signs of Celiac disease; however, we were fortunate in that her 'scope came back clean.

I do know that one of Leigh's children has a definite sensitivity to wheat and that they were leaning towards this as a diagnosis for him...I'll see if there's anyone else.

I'm sorry that it turns out your ds does have the disease. I guess the only good thing is that you found out early before too much damage was done...small comfort, though. :-(

Hang on and I'll see if I can get you some info...

GRRRR...I'm having some computer issues. In the meantime, I'll try to pm Leigh. I know she was doing a lot of research into this, as one of her kids has issues with gluten.

Also, OwensMom (Melanie) knows a bit about gluten-free diets. Her son (Owen) is gluten-sensitive.

Thanks so much Mary- this board is so great!

Eric's GI did a blood screen for celiac and it came back fine, but I was told by him and from others that if you have low Iga (Eric does) that the blood screen isn't conclusive.

The GI and I will be talking about this at the next appointment in October. I mean as far as what to do next. He did mention scoping him the last time we met in his office, but said he wanted to run more tests and give him more time before doing it. He said it was up to me if I wanted to try gluten free or not, and he said he would make a diagnoses based on how he responded to the diet (he said he felt strongly that Eric had celiac's disease), but I'm not comfortable with that. I need the diagnoses first before I start such a life changing diet. I just don't think Eric is. I need proof.

So I guess there's a chance that here in the near future we'll be celiac buddies.

During my daughter's scope last January, her GI found one of the two markers for celiac. Finding both together is conclusive of celiac but finding only one isn't. So, he followed up with a blood test that turned out to be negative. However, at that point in her life (12mo), Catherine had not consumed any gluten to speak of. She was still strictly formula fed.

Now, we deal with all kinds of behavior issues (feeding, screaming ad nauseum, etc). I tried a gluten-free diet with her for several weeks about a month ago and didn't notice any appreciable difference in behavior so we allowed gluten back in her diet.

My son is on a gluten-free diet as he had many symptoms that pointed us in the direction of celiac disease. The german hospital was suppose to do the blood test for this and never did. We than went to an alternative medicine doctor and she tested for food reactions and he reacted to most of the grains. At first we thought it was only wheat and oatmeal so we tried spelt but that totally backfired and he was so miserable.
Just this week we got our stool sample results back from enterolab and it showed that he has a casein and gluten sensitivity. Once we have some money saved up I want them to do the Gene Test for Gluten Sensitivity/Celiac Sprue.
I have my proof on the gluten-free diet though, he is doing awesome as long as we are very strict about it.
The smallest amount already sets him off, he will get very cranky and whiney and the next day we deal with blowout, liquid, horrible smelling stools.

His symptoms before going gluten-free were: frequent nightwaking, unexplainable rashes on his body, horrible smelling watery stools with lots of undigested food in it, very clingy, whiney, his eczema was very bad, I think that covers most of them I guess.

If you have any questions go ahead and ask, I'll try and help as much as I can.

I am really sorry to hear about this diagnosis with your son. I am very fortunate that my son has been cleared for it, but my brother in law is a celiac and my nephew is still to be decided.

Basically you have to follow a strict gluten free diet, even the slightest amount will cause very bad reactions. It sounds very daunting, but I have followed a wheat free diet a couple of months ago and there are so many gluten free options out there, it just means a little more preparation.

The good thing is that you have found out early, you can get the right help for your son right off the bat. Good luck and please let us know how your little one is going with this.

Oh and there's a celiac forum here
celiac.com
it's pretty busy and my questions that I posted got answered really quickly. Leigh (a fellow IRDer) is also a m ember there

my baby was scoped but they did a blood test to test for celiac and it came back negative.. whats frustrating was that she went through the scope and they said she had some eusinophils in her small intestine which "could be" signs of a milk protein allergy but they didnt know...a lot of the tests such as the rast test for allergies my gi told me is only 80 percent effective. my baby tested negative to milk allergy but they turned around and told me it could be wrong cuz she was not gaining weight well etc... i wish they would come out with a more defenitive test.

I am so sorry, I just realized that I missed this thread!

Celiac is always in the back of my mind and although my 5 year old has tested negative to bloodwork and an incomplete scope back in Sept, we still can not rule it out. Our GI seems to come back to this as well.

I know celiac is for life. You will have to remain on a strict no gluten diet as even the slightest ingestion or contact with it will set your baby off. It does damage each and every time you have an accidental "glutening". Bear in mind that gluten is not only found in foodstuffs. You will have to look to shampoos, soaps, and many household products as well. I know that we have on site a gluten free playdough recipe thanks to Melanie. Once you get your child on track with a gluten free diet then you are going to have one happy and normal child. it does not progress without the gluten so the answer is to keep gluten free.

I am also so sorry your child has tested positive for this at such a young age. Wow. That is amazing. As it has been so long since you posted to this, how is your baby doing now?

As far as testing goes, it is notoriously difficult to diagnose children, to answer Kristen's question. I would suggest that you start a thread for yourself on that so you can gain much better response. We have many on site, myself included, who have had testing show negative and in reality we know that a problem exists. It is all about trial and error really and you can get a definitive answer that way. :)

so sorry to here your son has celiacs didease poor thing


An adult friend of mine has it also he neverfound out till he was 24 years old he always felt no right but just got used to it he had an idea of what food he could not eat just did not know why but after he was diagnosed he saw a dietician that outlined everything he could not eat he followed it to the letter and after about 2 weeks he said he felt like a diferent person he had no idea a oerson could feel that good and so full of energy

i hope your son does this well with the special diet