Diagnosing Infant

[Parvelle]

Hello--

I was diagnosed with Celiac disease when I was 18 months old. Back in 1978 this disease was almost unheard of, so I am so excited to see an entire website devoted to it. I spent the first 8 years of my life completely gluten-free thanks to my wonderful parents. When I was 8 I was given a biopsy and told that I could tolerate gluten again. I have had it ever since and feel great. So for all you parents out there who are saddened by how being gluten-free may affect your children there is hope.

Now I am the proud mother of a four month old. I am breastfeeding and decided to go gluten-free after Britton did not gain weight and had horrible reflux. His pediatrician, though she knows I am a celiac, does not seem to be taking this into account when treating him, and suggested that he be switched to formula. I refused and decided to go gluten-free. He is now gaining weight and the reflux has stopped. I am wondering if anyone knows if infants can be tested?

Thanks,

Rachel-Frances

[Guest nini]

Hello--

I was diagnosed with Celiac disease when I was 18 months old. Back in 1978 this disease was almost unheard of, so I am so excited to see an entire website devoted to it. I spent the first 8 years of my life completely gluten-free thanks to my wonderful parents. When I was 8 I was given a biopsy and told that I could tolerate gluten again. I have had it ever since and feel great. So for all you parents out there who are saddened by how being gluten-free may affect your children there is hope.

Now I am the proud mother of a four month old. I am breastfeeding and decided to go gluten-free after Britton did not gain weight and had horrible reflux. His pediatrician, though she knows I am a celiac, does not seem to be taking this into account when treating him, and suggested that he be switched to formula. I refused and decided to go gluten-free. He is now gaining weight and the reflux has stopped. I am wondering if anyone knows if infants can be tested?

Thanks,

Rachel-Frances

they have learned so much more than they knew when you were 8... if you were on a strict gluten-free diet of course your biopsy would be ok, IT DOES NOT MEAN YOU CAN EAT GLUTEN... Dr's didn't know that much about it back then and thought that kids outgrew Celiac. That is not the case. You probably went through a period where because your parents were good and kept you off gluten for 8 years, your body healed enough to be able to tolerate gluten (visible symptoms I mean)... but the truth is once a Celiac, always a celiac, and your children are more than likely Celiac too.

Testing is unreliable in infants, only if damage is severe (as it probably was in your case) would it be able to be detected in infants. My personal opinion is to adopt a strict gluten-free lifestyle for you and your children from this point forward. You all have the genetic predisposition to celiac so I would opt for the preventative measure of keeping it out of your diets so that you do not continue to risk intestinal damage or further your risk for certain lymphomas.

I don't mean to be harsh, but that is my opinion. Take it for what it's worth.

Welcome to the board! Hope you stick around!

[AndreaB]

Welcome,

They now know that once celiac, always celiac. It is vitally important for you to stay gluten free.

As far as your son, testing in young children is unreliable. Really depends on how much damage is done. I would encourage you just continue breastfeeding. If you want to test, you could always try oatmeal later. I tried oatmeal with my infant son at 8 months. He had a very fussy week.

You could also use enterolab. He would have to be on solids first though.

You could also just raise him gluten free and get genetic testing done through enterolab.

[FeedIndy]

Agreeing with everything already said. There is evidence to suggest some celiacs undergo a "remission" where their bodies to not visibly react to gluten, but you could still be doing internal damage. If you are indeed celiac, it means a lifelong adherence to a gluten free diet.

[Parvelle]

It seems that I have offended some readers. That was not my intent. I was only relating my experience. I still have celiac, I know this. I said that I can tolerate gluten now. I think it is wonderful that there is so much more information available now. I am not suggesting that people take their children off a gluten-free diet. Going gluten lite was okay for me, but it was a personal choice. It was very difficult when I was younger to find help or food. Nowadays, in my opinion, it is so much easier because there are foods that are readily available for people with gluten allergies.

I have read on here that several parents are sad for their children. I always had to eat strange concoctions that my mother created, but I was never made fun of by other children. I know children can be cruel, but I don't think having celiac is anything to be sad about because one can go on to live a normal life. I have and I did it without prepackaged foods. I just wanted parents to know that as an adult who was diagnosed as a child, I am thriving and I didn't feel a loss of any kind.

[Ursa Major]

Hi Rachel-Frances, and welcome to this board.

I don't believe you have offended anybody. Andrea and Nini just don't want people to believe that you can actually outgrow celiac disease. Also, I am sure they're concerned about your 'gluten light' diet, instead of being gluten-free. Too many people here were told the same thing, ate gluten again for many years, only to end up being extremely ill with autoimmune diseases later on in life, often without the 'typical' celiac disease symptoms of diarrhea and wasting away.

It seems that more often than not celiac disease will manifest in neurological and psychological problems in people that had a time of remission, after initially being diagnosed as children. And Nini is right, after eating gluten-free for years, of course your biopsy was normal! It would have been after about a year already. Because if you don't eat gluten, the intestinal damage will heal, and you will be healthy. But you will still be intolerant to gluten, and should NEVER knowingly eat gluten again.

And yes, it sounds very much like your baby is intolerant to gluten as well. Good for you for going back on a gluten-free diet for him, it sounds like that was the thing he needed to grow and be healthy. And no, testing wouldn't work at his age, and won't work later either, as you're preventing the intestinal damage he would need to have to test positive. But you have all the evidence needed to know he is gluten intolerant. He was ill and not gaining before you went gluten-free, and now he is well again and gaining weight. Keep up the good work, and listen to your own instincts instead of listening to ignorant doctors.

[AndreaB]

You didn't offend me.

Thank you for posting about your thoughts/feelings about being gluten free when you so young.

[Guest nini]

you didn't offend me either, Ursula is absolutely right, we just want to prevent misinformation from continuing to get out there. What your dr.s told you at 8 was just plain wrong (not their fault, they just didn't know any better then). Now the experts agree that once a celiac, always a celiac and you never outgrow it and a gluten lite diet is just as bad as not being gluten-free at all. You may not FEEL visible symptoms, but it's still affecting your immune system, your digestive system and your neurological system. No one is offended with YOU, or angry with you or anything, just trying to prevent other people from believing the same misinformation you were told. (again, not your fault either).

I'm very glad you've decided to go gluten-free for your child, and I hope you continue to stay completely gluten-free for your own sake as well. You are right, it is your choice what you put in your mouth, but we would be remiss in our jobs if we told you that was ok by us. That is all! No judgements, just stating facts.

I also am glad to hear the perspective of one who was dx'ed so young and on the diet as a child, as my 6 year old daughter has been on the gluten-free diet since she was 3. I worry sometimes that she feels left out at school or feels different, but she tells me it's ok, and she tells me her friends are just as vigilant to make sure she doesn't get exposed to gluten at school.

I meant it when I say that I hope you stick around here, it's always nice to have a new "face" around here.

and again, I wasn't offended, I sincerely hope you weren't offended by my responses. That was certainly not my intent.

[TCA]

Just wanted to say that I too had an infant with horrible issues that cleared up when I went gluten-free while breastfeeding. I have never thought I had issues with gluten, but after going gluten-free I found that the joint pains, gas, and irritability I had always had were gone. I feel so much better after going gluten-free, that I'm never going back!

My son had a lot of issues too. He had 3 negative biopsies, but after trying the diet he is wonderful. I later found out that testing in kids under 5 is very unreliable. He is diagnosed via dietary response right now. We did the genetic test for our infant daughter and him and both had the genes. That and dietary response was enough proof for us. Hope your baby is doing well going gluten-free!

[Suzie-GFfamily]

It seems that I have offended some readers. That was not my intent. I was only relating my experience. I still have celiac, I know this. I said that I can tolerate gluten now. I think it is wonderful that there is so much more information available now. I am not suggesting that people take their children off a gluten-free diet. Going gluten lite was okay for me, but it was a personal choice. It was very difficult when I was younger to find help or food. Nowadays, in my opinion, it is so much easier because there are foods that are readily available for people with gluten allergies.

I have read on here that several parents are sad for their children. I always had to eat strange concoctions that my mother created, but I was never made fun of by other children. I know children can be cruel, but I don't think having celiac is anything to be sad about because one can go on to live a normal life. I have and I did it without prepackaged foods. I just wanted parents to know that as an adult who was diagnosed as a child, I am thriving and I didn't feel a loss of any kind.

I agree with the other replies... I don't think you've offended anyone at all.

I think everyone is just very, very concerned for you and worried about you because the information you've been given is inaccurate.

You should pick-up a copy of Dr. Peter Green's book "Celiac Disease: A Hidden Epidemic". He is the Director of the Celiac Disease Center at Columbia. In his book you'll find stories similar to yours- diagnosed celiac as a child and later put back on gluten because they were told they had "outgrown" it.

Knowledge about celiac disease has improved and researchers agree now that people don't outgrow this disease. As others have said, once a celiac always a celiac.

Suzie

[Mamato2boys]

I have read on here that several parents are sad for their children. I always had to eat strange concoctions that my mother created, but I was never made fun of by other children. I know children can be cruel, but I don't think having celiac is anything to be sad about because one can go on to live a normal life. I have and I did it without prepackaged foods. I just wanted parents to know that as an adult who was diagnosed as a child, I am thriving and I didn't feel a loss of any kind.

I'm so glad to hear this. I was one who posted about feeling sad for my boys. I have a three year old and 2 1/2 month old. We had our 3 year old tested and were shocked to find out that both DH and I carry GS genes. The 3 year old seems to be grasping the concept that certain foods will make him sick and give him "D", and (so far) accepts it if I tell him that a certain food will make him sick. I was worried though, that as he got older that he'd feel deprived.