Possibility Of 3 Y/o Having Celiac?

[mommy2three]

Hi! I just found this board and read through many posts. I am impressed with how knowledgeable you all are and thought perhaps I could glean some advice from you. Just recently I am thinking that there is a possiblity my 3 year old ds has celiac. When he was a baby, he reacted very strongly to wheat in my diet (through my breastmilk). Starting at 2 weeks of age he had mucousy/foamy/green stools (a couple times with specks of blood in them), fussiness, frequent colds, and terrible diaper rash. Once I removed wheat (along with dairy, corn, and soy) from my diet, he was much better. I noticed that even small amounts of wheat would bring on the symptoms. Once he got to be about a year old, I gradually introduced these foods back into his and my diets and he seemed okay. However, once he got to be about 17 months he became a rather irritable little boy where previously he had been quite easygoing and happy. Coincidentally (or not?) this was about the same time that I became pregnant with my daughter. I continued to nurse my son during my pregnancy and still tandem nurse him and my daughter, who is now 16 months (she basically had identical problems with the foods in my diet. However, now I basically eat what I want since she doesn't seem to react anymore unless I eat a ton of wheat, then she gets a diaper rash). I don't give her wheat or dairy though except occasionally in very small amounts.

So, my son has been very irritable for about two years now, not constantly--he does have plenty of times during the day when he happily plays with his older brother or friends, listens to books, etc. However, those times seem to be overshadowed by the times when he is just plain crabby, crying about one thing or another, throws tantrums at the littlest things, constantly seems to be getting hurt by tripping/bumping into things, etc. It seriously affects our family and makes my husband and I very stressed and not as enthused about parenting as we would like to be. We try to be positive, use humor with him, etc. but it is so hard sometimes and we just don't understand what is causing him to be unhappy so much of the time. Our 6 year son and our 1 year old daughter are both very happy and my dh and I are parents who spend most of our time interacting with our kids.

Also, he wakes up several times during the night and wakes up in the morning and from naps whiny, unhappy, crying--not refreshed and happy! I almost dread waking up to this every morning! His stools are frequently loose, although that could be attributed to the fact that he still nurses occasionally. He frequently tells us he is hungry yet when we give him the food he's requested he will take one bite and be done. This happens during the day and sometimes in the middle of the night. He sometimes eats very well but oftentimes doesn't eat a whole lot at meals. When he was a baby and toddler, my husband and I noticed that he had a distended abdomen but now it's normal.

About 5 months ago, I took him to an allergist because I strongly suspected that even though he didn't have the same symptoms that he had when he was a baby, he still had problems with certain foods. On the scratch skin tests, he was a 1 for wheat and dairy (on a scale of 0-5, 5 being very allergic). So, a slight allergy and the allergist basically said, "sure it might be a good idea to eliminate those if you want, but it's not a big deal." So, we eliminate wheat at home but because it's not a full-blown allergy, my husband and I have not stuck to our guns about it and when we're at parties, restaurants, etc. we don't really enforce it. Well, we've gone away for weekend a few times lately where he's been eating a lot of wheat (e.g. last weekend we were at a grad. party with hot dogs on buns, cake, hotel had continental breakfast of muffins, etc.--you get the picture). He was an emotional wreck for the next few days! Every little thing set off crying or a tantrum! Then after a few days of no or very little wheat he is so much better behavior wise.

Recently we went to a new pediatrician and when talking about these symptoms she casually threw out the idea of testing for celiac disease though she didn't feel it was a strong possiblity. However, that put a bug in my brain and I've been reading as much about it as I can. Seeing how there can be so many symptoms, yet irritability is one of the most common in children, I'm starting to think that perhaps it is a possiblity. I dread having blood drawn from him, yet I realize for his health I should have it done (and the dr. and I want RAST testing done too). If I'm going to have this done, should I not eliminate any wheat, just let him eat whatever he wants to help the tests to be accurate? Also, what is the difference between gluten intolerant and celiac disease?

Here I've always thought he was just sensitive to wheat (which may be the case) so I've never avoided gluten as a whole--he loves granola, tolerates spelt, etc. The idea of getting rid of all gluten is completely overwhelming to me. He throws fits when he can't have the food his brother has, so I guess the whole household would need to go gluten free. I know it's entirely possible and many families like you all do it--I guess I'll have a lot to learn! I guess I'm confused too because some of the posts I read have that people have tested negative for celiac yet they still go completely gluten-free and it makes a difference? Is that what gluten intolerant is? I guess I don't know how to determine if my son is simply allergic to wheat or intolerant to all gluten? How do I know if spelt is okay (I bake a lot with it)? I know that it is not gluten-free, but up until now I thought it was okay because he didn't react to it when he was a baby like he did with wheat, but now I'm not so sure.

Anyways, I guess I'm just looking for some info about testing and whether any of you have found that irritability was a main symptom in your child. (Oh yeah, he's pretty petite too but my dh and I are both short and my other 2 kiddos are small too so I don't think that's really a symptom in him.)

If you have read this far in my very long post, thanks for bearing with me!

Kristin

[Guest nini]

my daughter sounds an awful lot like your son... when she was three she was having terrible mood swings crying fits, temper tantrums on and on, and she couldn't control them... stools were very loose and she was a very picky eater, trying to get her to eat was like pulling teeth.

we had her tested BUT her testing was negative... Keep in mind that the testing in small children is extremely unreliable and the most valid diagnostic tool is dietary response. My advice would be to get your pediatricians support in a dietary trial and if going completely gluten-free causes his symptoms to improve then viola! you have your answer, you do not need an official dx of Celiac on his permanent record, you can have the Dr. declare him gluten intolerant, and if the Dr. is not cooperative, FIND ONE THAT IS... trust your parental instincts momma... you already know the answer and you do not need to subject your child to any testing, especially since it's obvious he has a problem with wheat/gluten and just go ahead and start getting him back to being your sweet little boy. My daughter has been gluten-free for 3 1/2 years now and she is such a happy healthy child, and it is obvious when she gets into anything with gluten because she reacts almost instantly and her mood changes for the worst and she gets whiny and cranky and irritable and gets a severe tummy ache and "d"...

anyway, that's just my two cents on the subject... I'm just a mom with Celiac and a kid that's obviously Celiac but we just call it gluten intolerance... feel free to e-mail me if you have any questions. nisla@comcast.net

[kenyonsmommy]

I can tell you that my son, who started having symptoms in December 05 and was finally diagnosed in May, was MISERABLE. He had been a very happy kid, easy going and turned inot a very unhappy child. he cried all the time over everything. When he turned two this January, I thought maybe it had something to do with just being two, but I have a 5 year old daughter who did not act like that at two so I hoped it was something else. he had been losing weight and having diareha all the time, so he had other symptoms. But, one thing I have learned here and through some other books (try celiac didease, a hidden epidemic, great book), is that no one presents the same, people can have a million symptoms or none. Also, I dont know about allergy testing, but I do know that celiac is not an allergy and I'm not sure that it turns up on allergy testing. That was never an option given to diagnose it. We were told the only way to definitively diagnose it would be blood testing, then a biopsy. A lot of doctors think someone has to present with classic celiac symptoms to have it, but this is absolutely not true. I would definately ask to have him blood tested.

[celiacgirls]

I have 2 daughters with gluten intolerance. My younger daughter reacted to wheat as a baby with D. She was tested with the blood test and was negative for celiac. I kept her off from wheat for a while and eventually she didn't have the D any more. She complained about her tummy hurting, though, so she was tested every few years for celiac with the blood test. The tests were always negative. My grandmother had celiac disease so I was never totally convinced she didn't have it or wouldn't get it. She did the gluten-free diet and said she felt better but I didn't make her be strict since she didn't have an official dx. Finally, I read about Enterolab and had her tested there and it was positive.

Because she was positive, I tested my other daughter and myself and we were both positive. My older daughter's main symptom was irritability. She even has a diagnosis of oppositional defiant disorder and depression. She is 10 now but her behaviour was always difficult to manage. She has been on the diet since the beginning of May and her irritablity is greatly reduced.

I was also irritable before going gluten-free and I didn't have any abdominal symptoms. So I think it is possible that irritability can be the only symptom.

Eliminating gluten is an overwhelming thought but is actually easier than you think. You just have to give up on processed foods. A hard adjustment, I know, but really not so bad.

[mommy2three]

Hi! Thanks everyone for your replies. I have been reading more and learning more. I just e-mailed my doctor to ask her about the Enterolab tests--she's pretty up on things so perhaps has heard of it. I'd love to have it prescribed rather than do it on my own to make sure that insurance would reimburse. It sure seems like most of you are having much more accurate results with the stool tests rather than blood tests. (Like someone mentioned, I'm aware that celiac isn't an allergy and wouldn't show up on allergy tests. I'm interested in doing both though because I'm not sure if his symptoms are due to allergy or, rather, celiac/gluten intolerance.

It's interesting that my husband and I are realizing that he actually has some symptoms of celiac. He has frequent diarrhea/gas and has had them for as long as he can remember back to childhood. He says his dad was the same way as well as some of his uncles. They're all known for their "sensitive digestive systems." The frequency of his diarrhea has gone done quite a bit in the past few years, and that would correspond to the time when my 3 year old was born and our consumption of wheat went down because he was so sensitive to it in my breastmilk. We both thought that maybe dh was sensitive to preservatives or something in processed foods because we basically stopped eating processed foods as well around that time. Last night, dh had a guys' night out at a friend's house and had plenty of beer, pizza, and pretzels. Well, today he had diarrhea and felt miserable all day long! So I am really encouraging him to get tested for celiac.

I really hope neither ds or dh has celiac but in a way it would be nice to find out that there is something I can do (going gluten-free) to make them both feel better! I know I could and probably should have our household go gluten-free right now just in case. It's just so hard to get motivated enough to do it without a diagnosis!

Kristin