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crittermom

New To Celiac

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Hi Everyone,

My name is Melissa. I have a 4 year old daughter, Katharine. She was diagnosed with Celiac this past friday and is also allergic to peanuts. Here is some history. About 12 months ago I started noticing Katharine not having much of an apetite which was scary because she is a extremely picky eater to begin with. She also starting complaining that her tummy hurt after she ate. She subsists on mainly some form of starch covered with some sort of cheese... cheese and mac, grilled cheese, cream cheese sandwhich, fruit, and breakfast starches. Her lack of interest in food and her hurting tummy had me worried. The doctor suggested taking her off dairy. This did not change anything. About 4 months ago, red blood starting showing up in her stool and on the tissue. The doctor believed it was internal fissures and gave us suppositories to heal them. This did nothing as well. Then we thought constipation, her stools are soft. The doctor was stumped and on a hunch sent her for blood work. The numbers came back abnormal so we were sent on to a ped gi, which I am already established with as my son has reflux. Well the gi ran a second set of blood tests which returned abnormal as well. One week ago today Katharine had biopsy and on friday we received word it was positive for Celiac.

As I am sure you all know, my world went into a tail spin! Everything she eats... oh my goodness...what now. Well I am starting to get a grasp on things and clear my head with research and lists of legal vs nonlegal foods. Things are getting interesting with one allergic to dairy and soy and one allergic to peanuts and gluten! I think we are going to eat spinach!!! Oh wait that was recalled!!!! lol :D

If anyone can help point me in the right direction, it would be much appreciated. Thank you for listening to my ramblings as I am still in a bit of a state of shock.


Melissa

Diagnosed Fibromyalgia March 2007

Mom to Katharine, 5 years old diagnosed Celiac Disease Sept 2006

Peanut allergy

Michael 3 years old diagnosed infant reflux at 6 weeks

Dairy Soy allergy until 22 months

Neg blood tests and biopsy Feb 2008

Positive gluten-free dietary response

You may have to fight a battle more than once to win it.

Margaret Thatcher

Fall down seven times stand up eight.

"I've decided that after air, water, and dirt, the next most common substance on the planet must be gluten!"

Toni Nolte, Overland Park, Kansas

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Hi Melissa, and welcome to this board. I am glad you finally know what's wrong with little Katharine. She was probably such a picky eater, because eating caused a tummy ache. When she realizes that food no longer hurts her tummy, she'll likely eat better.

Please be aware that she appears to be addicted to gluten and dairy, and may experience withdrawal symptoms initially, which could make her cranky and hard to live with for about a week or two (which may or may not happen, I'm telling you just in case). Also, usually people with celiac disease are initially intolerant to dairy, and need to be off it for at least six months, at which point you can test it, to see if it's okay. The tips of the villi will produce the enzyme needed to digest dairy, and obviously, those tips are gone right now and need to regenerate.

Also, celiac disease is genetic. Meaning, she got those genes from somebody. It has to be either you or your husband (strangely, many times it's both). It would be a good idea for your whole family to be tested. Your son's problem could be celiac disease as well, reflux is a common symptom.

There are several gluten-free cereals, and for milk you can use rice milk (not rice dream, it has gluten) or almond milk, she'll get used to them pretty quickly, I'm sure. Soy milk isn't a good idea, as many people with celiac disease can't tolerate soy very well, either, and you don't want to start another problem. Besides, with your son being allergic to soy, you don't want the stuff in your house, anyway.

If she likes fruit, great. It makes the best snack anyway. The best way to start the diet is usually to go for naturally gluten-free foods, like rice, potatoes, vegetables, meat, fish, eggs etc. Less chance of making a mistake, and wholesome, healing food. Just make sure you thicken gravies with things like cornstarch or light buckwheat flour (which has nothing to do with wheat, it's not a grain).

Also, you need to check all personal care products, like shampoo/conditioner, soap, lip balm, lotion, toothpaste for gluten. Replace anything that contains wheat germ oil, barley extract or oat bran. As well beware of vitamin E in those products (as well as her vitamins), it might be derived from wheat germ oil (call the 1-800 number on the package when in doubt).

There are great noodles by Tinkyada to be had in the health food stores, and now many regular grocery stores as well. You really would be hard pressed to tell the difference (other than the price, unfortunately <_< ). Just don't drain them in your old plastic strainer, you can't get the gluten from your normal pasta out of those, and you'll gluten her. You will also need a new toaster if she is going to eat gluten-free toasted bread, you absolutely cannot clean a toaster well enough.

Okay, others with little kids can give you more advice, this should get your head spinning already.

It might look overwhelming at first, but believe me, it will get second nature after a while, and you'll all get used to it. And it will all be worth it, knowing that your little one will grow up healthy, instead of being sickly all her life, and developing other problems like many of us have.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Hi Melissa and Welcome!!!! :D

You have come to the right place to learn and meet with others. Great bunch of people.

As far as your children's allergies, they are very workable. Did you know that soy and peanuts are from the same family? I took my family off peanuts as my husband and I are soy intolerant, my two oldest children were just below the mark. I assume they are allergic though...will find out towards the end of next month.

I have a thread I started that has gluten, dairy and mostly soy free recipes. My family is gluten, soy, dairy and peanut free. I'd be glad to help out as much as I can. Can you children eat other nuts...almond butter is fantastic! I'm a former vegan so have lots of substitute recipes. Of course many of them have soy or gluten in them but there are still some good ones.

I'll go find my thread and include it here.....be back in a minute. :P

Ok, I found it.

http://www.glutenfreeforum.com/index.php?showtopic=23795

Your screen name. Do you have pets?


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Welcome Melissa,

I think you'll find this board is a wonderful resource. My sig line has a link to another thread where we talk about how to get started. You might find that helpful. I got tired of looking it up all the time and just put it there for reference!

I also wanted to point out that my daughter's primary symptom for celiac was reflux. You might want to get your son tested too and do a diet trial. My son had symptoms similar to your daughter. He is also extrememly picky, but is getting better about that the longer he's on the diet. I have a list of foods he eats. If you want that, just PM me. I guess with their varying symptoms, my kids helped to codiagnose each other. Dietary trials told the story with both after no testing for my daughter (LONG story) and inconclusive testing for my son. Both are doing soooo well now. I'm never going back!


If you're looking for info on how to get started on the gluten-free diet, check out this List for Newly Diagnosed.

Self - Pain free since going gluten-free 9/05 (suffered from unexplained joint pain entire life), asthma improving, allergies improving, mysterious rash disappeared (probably DH)

Husband - Type 1 diabetic, Negative bloodwork

Son - Elevated IgA, Very high IgG, 2 negative biopsies - HLA DQ2 and DQ8 positive, Amazing dietary response since 1/06

Daughter - Congenital Heart Defect (2 surgeries), Reflux, choking issues, eczema, egg allergy - HLA DQ2 positive, Good dietary response (via me because of nursing) since 9/05

"All things happen for good for those who love God..." Romans 8:28

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Hi Melissa and Welcome!!!! :D

You have come to the right place to learn and meet with others. Great bunch of people.

As far as your children's allergies, they are very workable. Did you know that soy and peanuts are from the same family? I took my family off peanuts as my husband and I are soy intolerant, my two oldest children were just below the mark. I assume they are allergic though...will find out towards the end of next month.

I have a thread I started that has gluten, dairy and mostly soy free recipes. My family is gluten, soy, dairy and peanut free. I'd be glad to help out as much as I can. Can you children eat other nuts...almond butter is fantastic! I'm a former vegan so have lots of substitute recipes. Of course many of them have soy or gluten in them but there are still some good ones.

I'll go find my thread and include it here.....be back in a minute. :P

Ok, I found it.

http://www.glutenfreeforum.com/index.php?showtopic=23795

Your screen name. Do you have pets?

Hi Andrea,

We do have pets, 1 dog, 3cats, and 4 fish, however that's not the reason for the screen name. When I was pregnant with Katharine we could not pick a name to save our lives! We just dubbed her "critter". We picked Katharine 3 days before she was born, however the "critter" stuck as her pet name.


Melissa

Diagnosed Fibromyalgia March 2007

Mom to Katharine, 5 years old diagnosed Celiac Disease Sept 2006

Peanut allergy

Michael 3 years old diagnosed infant reflux at 6 weeks

Dairy Soy allergy until 22 months

Neg blood tests and biopsy Feb 2008

Positive gluten-free dietary response

You may have to fight a battle more than once to win it.

Margaret Thatcher

Fall down seven times stand up eight.

"I've decided that after air, water, and dirt, the next most common substance on the planet must be gluten!"

Toni Nolte, Overland Park, Kansas

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That's neat!

I know a couple who could not agree on names and always seemed to find one just before the baby was born. She was always early (5 weeks).


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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