2 Babies, Tons Of Symptoms Need Some Advise

[courtney.hopkins]

My 19 month old daughter for sure has an intolerance to gluten but she has not been tested for celiacs yet. Her symptoms started nearly from birth with lots of gas, abdominal destination , irritability and eczema. We were told it was just colic and that was that. Around 6 months old we started giving her rice serial , ferina and infant oatmeal. Every time we fed them to her she would begin to vomit until there was nothing left in her little tummy to vomit, she would become lethargic, experience diarrhea and her stools would become pale and greasy and her eczema would flare up so bad. So I wrote down all the common ingredients in the baby food she was eating and narrowed it down to wheat flour and then proceeded to look up wheat allergies online that is how we found out about gluten. We took our daughter off gluten for two weeks and she was a completely different baby! I wanted to make sure our suspicion was true so I gave her some gram crackers, oatmeal and crackers and sure enough she became very ill for a few days once again. We explained our finding to the dr. And were referred to a gi dr. But the appointment was months away and we had no insurance to pay for it at the time so we did the only thing we knew to do and that was to put her on a gluten free diet until we were eligible for insurance at my husbands new job. Stupid stupid stupid! Little did we know that doing that would make her unable to b tested. We were old we would have to put her back on gluten for at least 3 months before being tested. After seeing how sick she gets we decided to leave that decision up to her when she gets older and keep her gluten-free for now. I can't knowingly poisen my child! Every once in a wile she will get hold of something containing gluten and get pretty sick but its not often. Currently she is the only one on a gluten-free diet in our family.

I just recently had a baby boy he is 9 weeks old, I am currently breastfeeding him like I did my daughter and he is now showing the same symptoms. He has very bd eczema, very fussy and gassy. I didn't know until today gluten can b passed through breast milk. Could he have the same problem? Should I b on a gluten-free diet of could it mess up the testing process again? I don't know if I should give him gluten containing foods when he is old enough. And the dr's in my area have no knowledge of this disease and don't have many answers for me. I also don't know when could a good time to have my new baby go see a gi doctor . Please help if u have any advise e mail me. Courtney.Hopkins@ymail.com

[amberlynn]

Honestly, here's what I would personally do...

Cut gluten out of your diet. Celiacs/gluten intolerance is genetic, and most likely your 2nd child has the same issue as your first. If that's the problem, then he will probably get better in a few weeks (you need to give it at least a month to pass through both your system and his).

Don't worry so much about testing. It *obviously* makes her sick, that's all the 'testing' you need. I know, I went through this just last week, and my husband and I just decided not to do testing because my oldest son and I are both experiencing problems with gluten. They weren't as obvious as your daughter's symptoms either... just lots of little things here and there. You've already started her healing process, there's no sense in making her physically ill. If, someday in the future when she has the ability to make the decision herself, then she can pursue testing... That's my take anyway.

[Pattymom]

When my dd,now 5, was born, and was fussy, gassy, exczema covered, etc. I started by taking dairy, then wheat, and then gluten out of my diet, and she got better. At the time I figured it was something she would outgrow, and never thought to consult the MD for something I could fix myself. Seh was very healthy and grew well until aroudn 2 when the MD thought we should try gluten and watch for results--she showed no obvious symptoms at this time, and blood tests after a few months were negative, though low and behold she stopped growing. And since age 3 when this was clearly charted it has been an odyssey of tests and trials, and attempt to get her to grow. She is now off gluten and dairy again, and exczema free-except when she cheats for a little ice cream, and growing again--though alas no cath up growth for the year and a half she lost, so still very very small for her age.

I have no regrets for taking her off as a baby--it made the first two years of her and my life so much better then they would have been if I waited on testing and such. She has no developmental issues, other than being short, After readign all the health issues and such we could have faced, I feel good that her infancy was safe. My regret is not trusting my instinct and keeping her off gluten forever. It was so hard at 2 to let her eat what I had spent 2 years of her life avoiding. Never felt good about it, but felt " I had to give her a chance at a normal life," her life is fairly normal, LOL< she takes dance, likes princesses, plays with her friends and siblings and dolls, etc. she just doesn't eat gluten. Note that when I stopped gluten for her, I felt great and I didn't know I was really sick before--just often bloated and gassy. I had the blood tests done, and mine were positive when she was 4 months old, and that was 3 months off gluten ( well, I know now I was still getting some)

Trust you instincts and take care of your baby.

Patty

[nmlove]

I think I'd do the same as you concerning your first daughter choosing to test at a later age. If she gets that sick and gluten-free obviously works then ok.

For the baby, my daughter (4 months) reacts to dairy and soy in the same way - gassy, diarrhea, green/mucousy stools, never sleeps, and eczema (way worse with soy). Dairy I was able to get on top of pretty quick and soy I just challenged last weekend - and she's still reacting! So I feel confident that gluten isn't affecting her, at least quite obviously like soy and dairy. I'd drop one thing at a time (though I'd do soy/dairy at the same time), give it a month and retry. I say a month, not two weeks, because that's how long it took for my daughter to get to some kind of normal. An accident or challenge now will wrap up in a week or so rather than taking a month.

Good luck!

[chiroptera]

I totally agree with leaving her off gluten! It makes her sick; her body know it does and so does mommy. You both know what is right. You have done/are doing the right thing by not letting her eat it. You may run across people that think it's "terrible" that you are "withholding" the scared gluten from her. Please just ignore those. In our family we feel that if it makes you sick, don't eat it.

My twin daughters who are 9 (huge diference from babies) are gluten free. I took them off of gluten on my own accord and also did stool testing via Enterolab. At the time my husband had a job and we could do it as insurance usually doesn't cover it. It is not invasive and while it doesn't test for Celiac it does test for gluten sensitivity which can make you very ill as well.

We finally go in to the ped gastro in Sept and obviousy their Celiac blood panels were negative. They do have one Celiac gene though (probably from their paternal grandma is an officially diagosed Celiac). My daughters are old enough to say no way not ever no how will they eat gluten again. That is our "proof."

With you babies, the proof may be that you will have healthy, happy, thriving babies!!!!

Best of Luck: Mommy usually does know best!