Celiac From Birth?

[doulagrl]

Hey Everyone,

I'm still new to celiac disease and could use some advice. When my son was born he had very bad colic and ezcema. I was breastfeeding him and kept a food log, eliminating one by one the things that seemed to trigger his symptoms. In the end I was down to grilled meats, carrots, peas, apples, bannanas, rice milk and rice cereal. Suddenly the fatigue, gastro symptoms, etc. that I had been battling for years disappeared and I inadvertanltly discovered from this that I had been reacting to gluten. I didn't figure this out until two years later when I heard about Celiac for the first time and realized that the improvement I had seen in my health while I was nursing came from the change in diet.

Back to my son, I'm fairly convinced he also has celiac disease and am seeing a doctor today about getting him tested. It never occured to me until today that the symptoms we were dealing with at birth could have been caused by him having celiac disease. My first question is can Ezcma like symptoms be caused by celiac disease? I noticed that if I added in any other cereal other than rice cereal to my diet or ate granola bars etc. that he would break out and the colic would get worse. I didn't know about gluten intolrance back then and thought perhaps he was reacting to the preservatives in the cereals, which the rice cereal I was eating didn't have. As long as I was strict in my diet he was colic/ezcma free and slightly about average on height and weight. Once he started on baby food he started slowly dropping behind on the growth scale and became anemic. By 18months he was considered underweight but the pediatrician said it was probably related to his continued lactose intolerance and to give him a calcium supplement.

He is 2.5 now. My second question is we no longer have problems with bad gas/colic and ezcma as long as he stays away from milk but he still exhibits the other symtoms of celiac disease, being underweight, anemic, and lactose intolerant. Could the eczma/colic have been caused by celiac disease in the early months of life but not be being triggered now because he has been on gluten for so long? I know that things that used to not set me off while I was eating gluten all the time now will give me a realy bad reaction after being gluten free for three months. I'm just confused as to whether his early symptoms were being caused by celiac disease or something else.

One more question I'm 28wks pregnant and planning to breastfeed again. Obviously I will be continuing gluten free for my own health but if the baby isn't already genetically predisposed to celiac disease am I putting him at risk of developing gluten intolerance simply because he won't be exposed to any gluten for the first six months of his life?

Thanks,

Melody

[Guest nini]

eczema can be triggered by Celiac, gluten intolerance, wheat allergies, dairy intolerance or any food allergy...

yes it's possible he could have been having "gluten intolerant" symptoms from birth, I believe my daughter did... but hers was more projectile vomiting, diarrhea, severe bloody diaper rashes, not sleeping soundly, colic...

If you are going to be nursing, and will be gluten-free for your own health, it will not affect your baby in the negative at all... we Celiacs are genetically predisposed to this, it is not something that you can will away by introducing gluten at a certain age, although some limited studies seemed to indicate that, what I read said the studies were flawed. Standard recommendation is to introduce gluten at one year and watch for any reactions, with a genetically predisposed child, I think the recommendation is to wait until two... give their immune system time to really get strong...

[Guest cassidy]

I can address only the last question. I'm pregnant as well and I have been doing research to determine what is best for the baby. They recommend introducing gluten before 6 months. I realize that you aren't supposed to give babies food before then but it seems like in this case it makes sense to give them some sort of wheat cereal before the 6 month mark. I'm going to do that and watch to see if there are any effects. Then I think I'm going to keep the baby on a "gluten light" diet while I continue to breast feed. Maybe just a small amount every couple of days.

There are studies that show that if you breast feed longer you may delay celiac. They don't know yet if you permantely reduce the risk or if you just delay when the onset. I figure it is worth a try and if a bottle a day is good enough then I will keep doing it as long as I can.

I don't think I'm going to feed my child gluten in general because it makes me sick. I don't want to be constantly handling it and risking my own health. It seems like the kids that grew up gluten-free are well adjusted and aren't bothered by it at all. It is us adults that miss gluteny food that have the tough time. Social situations are the times when I miss gluten so hopefully by the time my child is old enough to go to birthday parties we will know if gluten is a problem. If it isn't then he can have all the cake he wants.

I wanted to find some research that said "this is exactly what you should do to reduce the risk as much as possible" but I haven't found anything like that. There are bits of info in many places but nothing is conclusive or offers the perfect plan.

Lastly, I read somewhere that drinking kefir or other probiotics when you are breastfeeding may reduce the risk of a child developing allergies. I don't know if that applies to celiac since it isn't an allergy, but I think this one is also worth a try.

[mommida]

The guidelines for introducing solids varies from year to year. My kids were 3 years apart and the advice was very different. I've looked at a few different articles on breastfeeding and Celiac. Breastfeeding is supposed to strengthen the gut. There appears to be a window of time to introduce gluten, between 5 to 7 months. Read information, talk to your pediatrician, and follow the cues the baby gives. If I had to do it over again, I would write everything down including the amount and time of meals. It could have helped narrow down the intolerances sooner or guided the doctor for the proper tests. Instead I had to do the research and ask for the Celiac panel. It also reccommended to wait longer for foods that are common allergens at least til 12 months. You are going to run accross major contradictions.

Yes I do believe my daughter was Celiac from birth.

Yes, excema can be a symptom of Celiac. (malabsorbtion of fat leads to extremely dry skin.) I do think gut pain in an infant would be called colic.

I don't understand the concept of gluten light. I am very reactive to gluten and it can take a week to get over accidental exposure.

L.

[Guest cassidy]

  mommida said:

I don't understand the concept of gluten light. I am very reactive to gluten and it can take a week to get over accidental exposure.

L.

From what I have read on the subject of when to introduce gluten it says that if you limit the amount of gluten in the diet then there is less of a chance of developing celiac.

So, if I introduce gluten and the child doesn't seem to have any problems then I will try to give them some, but not have meals of pasta, bread, etc.

For people who have a problem with gluten then certainly that doesn't make sense. I get sick from a crumb of cc and it takes me a long time to get better, so I would never do that for myself or for a child that seemed to react to gluten.

You are right that there is a lot of contradictory advice on how and when to introduce gluten. The frustrating thing is I don't think people like pediatricians have a clue, unless they really understand celiac. I was thinking of contacting my local ROCK chapter and seeing if they have any additional advice or research they could recommend.

[mommida]

OK that makes more sense to me now.

You are going to limit how much gluten is being introduced into the diet, right from the start.

At the time of my oldest child, the experts said "absolutely no rice cereal in a bottle EVER!" What were the mothers doing? Putting a scoop of rice cereal in the "bedtime bottle" What did the formula companies start selling? Formula with added rice cereal.

Every piece of information you read this year on infant nutrition will change. Take the information you have and do what you think is best. You've already done more research than most parents.

L.

[bonnieboo]

  mommida said:

At the time of my oldest child, the experts said "absolutely no rice cereal in a bottle EVER!" What were the mothers doing? Putting a scoop of rice cereal in the "bedtime bottle" What did the formula companies start selling? Formula with added rice cereal.

Most experts still say that, lol, despite the formula companies' making it available, and some pedis encouraging it. The early introduction of rice cereal can increase your child's risk of developing diabetes, and rice in a bottle can be a contributing factor to later struggles with obesity, etc. My 18 months old has never had rice cereal, lol!

[Generic]

I can say from personal experience that I have had celiac since I was born. My mom breast fed me. From the age of 2 years of age or so I would get horrible stomach cramps and would scream in horrible pain. My mom thought I had celiac all the way back then in the 70's.

The Dr. told her I had developed a wheat allergy and took me off it for awhile. There wasn't alot of info about it back then, so she didn't know about the rye and barley, etc. He told her she was paranoid and it was normal. I wasn't diagnosed until I was 13 and litterally dyeing.

Up until the age of 11 or 12 I would only get sick once evey few months or so. Of course we switched Dr.s and he reffered me to a pediatric GI.

-Laurie

[mommida]

My daughter was finally diagnosed at the age of 17 months. She was breastfed and had signs of fat malabsobtion in her bm's, well before being introduced to solids.

L.

When I did introduce rice cereal, it was a major problem for my daughter. (It was at the age of introducing solids, I never thought the rice cereal in formula was a good idea for the reasons you mentioned.)

[Sage'sMommy]

My daughter Sage is 15 months old and just recently diagnosed but was hospitalized at a month old for her celiac symptoms. So I know that at least a little bit before a month old she had to have had some kind of wheat. I've been racking my brain because Sage was breastfeed, how did she get wheat? And now I'm watching and seeing the results in myself from being on the gluten-free diet with her. But this is the first time I've come across any other children as young as Sage. I don't feel like such an alien now, and I defenetly feel less like a gluten monster that's hurt my baby.