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canadianmama

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canadianmama Newbie
canadianmama
Posted

hi

i'm the mama of a 15 month old who hasn't gained weight in about 6 months. he looks skeletal. he's very, very lactose intolerant and gets colds every single week. he's been seeing a specialist about all this, but appointments are hard to get with her. 3 weeks ago he had blood taken to test for celiac disease and thyroid condtions. this week the clinic called and said that they have the results, but don't give results over the phone, so we need an appointment. and the next available appointment is feb 28.

there's no stinkin' way i'm waiting a month while my baby suffers. :angry: he's probably already stunted his growth as it is. so i started researching thyroid and celiac issues. i hadn't before because i tend to get obsessive. :P the thyroid thing didn't really fit, but reading the symptoms of celiac disease was like reading a description of my son. so yesterday we started on a gluten free diet. so far he loves the rice crackers but isn't so excited about quinoa. he still breastfeeds so i'm not vry worried about him missing out on a balanced diet, my milk will make up whatever is lacking. i'm looking for recipes for quick, easy, toddler-friendly foods for the boy.

so that's my long intro. i'm happy to have found a community like this one. hi everyone!

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2kids4me Contributor
2kids4me
Posted

HI and welcome! I am sorry you are being told to wait so long. My children have a number of conditions and we have always gotten results over the phone - from cardiology to endcocrine and GI. The Gi clinic got us in within 4 days to review biopsy results and diet ect..but they did tell me over the phone that celiac was confirmed (with both kids).

Gosh with a baby so young,I would have thoguht it would be VERY important to know.

I'll tell you what I have done - I ask to see the children's records - as parent of a minor - you have the legal right to view them. You only need a doctors's okay if you want to copy test results. I have a file at home with copies of biopsy reports, surgical reports, cardiology review and genetic study done when she was 3yr, MRI etc.

Some nurses give me a dirty look and tell me - it's medical records, confidential etc. I quote the legal rights and then they comply. I guess I am what you call a pain int he a** mom. But I learned long ago that showing up in person makes you harder to ignore, but I just smile and say " sorry to drop in but I am pretty worried and it will help make the upcoming appt more valuable for both the doctor and I if I could have chance to review the test results and be prepared with questions." "Thanks, I'll wait while you find the file"...then smile and sit down.

Sandy

Ursa Major Collaborator
Ursa Major
Posted

Hi Canadianmama, and welcome to this board. I am appalled that they don't at least give you the information of whether your baby has celiac disease or not. You're right not to wait for a month before trying him on the gluten-free diet.

You say you're still breastfeeding, which is great. But unless you will be gluten-free as well he will get gluten through your milk. So, unless you wean him (which I wouldn't suggest, given his poor health), you need to be on the gluten-free diet with him for now.

You know, he can just eat normal food. Meat, vegetables and fruit are gluten-free. He really doesn't need any of the gluten-free specialty foods. Nobody needs any grains to get all the nutrients they need and to be healthy.

GFBetsy Rookie
GFBetsy
Posted

One thing you may want to be aware of is that gluten does pass through breast milk . . . so you will need to be gluten free as well while you are nursing him.

Welcome!

Oops! She beat me to the comment!

canadianmama Newbie
canadianmama
Posted
  • Author

dangit, i was hoping that gluten molecules were too big to pass through into breastmilk. alas.

oh well, i guess i'm on this crazy diet, too.

we eat a lot of natural foods and almost nothing processed, but i love baking bread and jack andi have always enjoyed sharing our morning bowl of oatmeal. plus he loves his crackers. so i have a few things to figure out replacements for, but we aren't carb addicts, so it's not as hard as it could be.

oh, and even his rice cereal has gluten in it. :(

i'll have to investigate other brands.

Ursa Major Collaborator
Ursa Major
Posted
dangit, i was hoping that gluten molecules were too big to pass through into breastmilk. alas.

oh well, i guess i'm on this crazy diet, too.

we eat a lot of natural foods and almost nothing processed, but i love baking bread and jack andi have always enjoyed sharing our morning bowl of oatmeal. plus he loves his crackers. so i have a few things to figure out replacements for, but we aren't carb addicts, so it's not as hard as it could be.

oh, and even his rice cereal has gluten in it. :(

i'll have to investigate other brands.

I sometimes eat cream of buckwheat hot cereal by Bob's Red Mill. You can find it in places were they sell gluten-free food, or online (I buy it at my health food store, they just started a gluten-free section). I really like it, and your family might, too.

Make sure you don't use Rice Dream, it is not gluten-free. Other rice milks are, though. Almond milk is nice, too. I use goat's milk, but only in small amounts, and not very often. It seems okay. I can't tolerate cow's milk products at all.

e&j0304 Enthusiast
e&j0304
Posted

I'm sorry that your son has been so sick. Can you drive to the drs. office and request the records? I have done that in the past with no problem at all. I totally understand that with a child that young you would want to jump right into doing the diet. Just know that once he's on the diet he cannot have the biopsy done. With a positive TTG you don't really need the biopsy anyway, but I just wanted to make sure that you knew that. I think there are plenty of drs. who will give a celiac diagnosis based on positive blood tests and positive dietary response.

Good luck and I hope your baby gets better soon!!

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