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Carollynb

New With Lots Of Questions

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Hello Everybody!

A little history first: I have a son who will be 3 next month. He was diagnosed with a cow's milk protein allergy when he was just under 2 months. We've always battled with diarrhea, constipation, eczema, rashes/blisters, volatile mood swings, and even had multiple episodes of bloody stools (saw one GI doc but never explained). We've spent many days and nights at the doctor's office and emergency rooms.

We've had blood tests confirming he is allergic to eggs and peanuts but no longer to milk. He also has numerous enviromental allergies. His allergist has not gotten a test to actually confirm he is allergic to wheat but thinks he may have a sensitivity based on our reports of worsening symptoms when certain foods are ingested. He also tested positive for a corn and soy allergy but they were extremely low.

We were really worried he was autistic to some degree because of multiple issues but was reassured by his ped that was not the case.

Once I began to research food and gluten allergies I felt that maybe it wasn't so much the wheat was causing problems, but the gluten. I now bake his bread using a gluten-free flour and egg replacer, serve vegan waffles, and have discovered gluten-free, wheat free, egg free chicken nuggets, fish sticks and corn dogs to feed him. We've sinced noticed a dramatic change in his behavior, only noticing the extreme sensitivity and volatile outbursts when he has ingested foods with gluten. However, constipation is a daily issue, with the rare bout of diarrhea from time to time.

He is due his 3yr exam next month. What kind of tests, if any, should I request to be done to finally know if he just has some allergies, an intolerance, or if he has celiac disease? If his ped seems hesitant to request the tests how can I locate a doctor in my area that specializes in children with this disease? (I live in the northern part of Dallas, TX.)

Is there any kind of requirement that states child care facilities must be educated/trained on this disease and how to care for children with it? Is there somebody that can be hired to train daycare personnel on the proper methods to avoid cross contamination of foods? Since it seems to run in familes should my husband and I be tested too? How do I locate a local support group for parents or start one?

I can't believe it's taken me so long to find this site. Thanks for taking the time to read this. I pray tomorrow is a better day for all of us!

Carol

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Hi! Wow, it sounds like you guys have been through a lot. Your child sure is lucky to have you as a parent. :) I always say that if a pediatrician is hesitant on giving you a referral to a GI or to run tests, find a new Dr! My other idea would be a homeopath. My ds sees one and they REALLY try to get down to ROOT of all issues. Sometimes insurance doesn't cover it but if you can afford it, it would be worth a few visits. They're really good on dealing with kids on these issues, if you find one who takes kids. A lot do. :)

I hope you guys are able to find all the answers so you can move on & start treating as necessary. Life is hard enough. Answers are much easier to live with. Good Luck!!!


MrsGlutenFree

1 son dx on December 2007 with Celiac Disease & acute colitis

1 :-) husband dx with Celiac on December 2007

My Gluten-Free blog

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Hi, like you my child had all those symptoms minus the bloody stools! I live in Australia so I cant help with the doctor side of things. I can say that yes you should think about getting tested or researching medical history. I have just found out that my dads side of the family have all got some sort of gluten intollerance. (He left when I was four) My daughter is quite healthy now apart from the occasional set back.

I will say though that here there are no training courses for child care workers on this disease. I am a child care worker myself and I am slowly teaching my coworkers about the disease and how to deal with it playdough and gloop is an issue.

Good luck I hope you get the support and advice that you need.


[b]Had very interesting symptoms as a child. Failure to thrive, lactose intollerance, vomiting, recurrent bladder infections, short stature (5ft tall)

Have family on my dads side dx celiac.

grandmother and brother symptomatic! No dx as this is recent discovery.

My symptoms returned Feb 08

Negative blood tests. 04/08

No iga deficiency test.

Gluten free 15/7/08

Daughter 17 months.

symptomatic since six months

Remarkable dietary response

Lactose intollerant

Negative blood test at nine months.Gluten free at the time for 4 weeks

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I'm so glad you found this site. You're in good company :)

You already know it can be tough to deal with daycare, and other situations where young children interact. But it can be managed in a way that keeps your child safe, without putting him in a space suit. I do know that finger paints, stickers, paste, paper mache, and all sorts of other things kids play with usually contain gluten. Watch out for noodle crafts too.

I just dug up this list of safe things for you:

* Paints

A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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He is due his 3yr exam next month. What kind of tests, if any, should I request to be done to finally know if he just has some allergies, an intolerance, or if he has celiac disease? If his ped seems hesitant to request the tests how can I locate a doctor in my area that specializes in children with this disease? (I live in the northern part of Dallas, TX.)

Is there any kind of requirement that states child care facilities must be educated/trained on this disease and how to care for children with it? Is there somebody that can be hired to train daycare personnel on the proper methods to avoid cross contamination of foods? Since it seems to run in familes should my husband and I be tested too? How do I locate a local support group for parents or start one?

I can't believe it's taken me so long to find this site. Thanks for taking the time to read this. I pray tomorrow is a better day for all of us!

Carol

I'm in Austin and Alamoceliac.com is a good place to start though I know there is a ROCK group in Dallas too. (my daughter is 3)

There is not requirement that childcare facilities must be educated/trained on this disease it is treated much the same as a food allergy and Diabetes... it is up to the parents/student to provide the information and education needed to be safe.

As far as preschool goes, I lucked out and when the owners heard about my Celiac disease they decided to do crafts with rice flour instead of wheat (paper rmachet and playdough) and they give me a monthly snack/meal menu with ingredients. This way I can okay certain things for her ahead of time and bring things similar when she can;t have what they offer. She goes to a small fine arts preschool and I'm super lucky I found it.

My daughter has been gluten free since she was 18 months old and she has only been glutened 2 times. 1 time because she chose to eat her friends macaroni and cheese (took it out of the refrigerator while I was doing laundry and ate it with out me knowing) and the other time it was when we went out to eat and someone was careless when making her food. I've not had a problem with school or any other place really.

Hopefully that answers some of your questions.

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hello there!

i am new to being a celiac parent too! we can learn together!

my dd is 9. i also have a 2 1/2 yr old and a 6 month old.

last year i sold the daycare that i owned, and i had a celiac student i cared for.

click on my user name, find the posts started by me from back then for a few ideas on what NOT to do when dealing with teachers, daycare workers, etc.

i wish you the best of luck


dd age 12 -- diagnosed celiac via 2 positive bloodtests april 08 & biopsy june 08

ds age 5 -- bloodwork negative aug 2008

ds age 3 -- not tested yet

ds infant -- not tested yet

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WOW! Thanks to all of you who responded to my post. I've gotten so much useful information already.

I've submitted a form to be contacted by somebody from the Dallas ROCK and I've looked at the list of doctors experienced with this sort of condition. Maybe after speaking to some others in my area I can find one that seems to be a favorite of some parents. Nathanial has been through so much already (3 surgeries included) I don't want to put him through anymore than is necessary.

That list of products to use for art/school projects is absolutely wonderful! Thank you! I will be copying that to have at home as well as give to his daycare providers. (One of the staff has a son, also 3, who may have celiac disease and I'm giving her this link.) I knew about the play dough and glue but didn't even think about the markers, etc. Unfortunately, we can only use Cetaphil soap for him and occasionally J&J shampoo; anything else aggravates his eczema. Eucerin is his moisturizer. I don't see anything about gluten in it but how do I know? What about toothpastes? What about prescription and OTC medicines? Man, I was so consumed with reading his food labels I didn't even think about anything else. This is a full-time task with OT!

I found out today that his daycare facility is scheduled to be visited by a nutritionist next week. I'm going to try to arrange my schedule to be there. When it comes to the food part of it, I'm doing okay and have actually found recipes that my husband and I prefer over what we would normally eat (pizza is the best with his pancakes a close second!). I to receive a monthly menu so I know what to send to school for him to eat. All but 5 days of the month I send his lunch with him and ALL of his snacks.

It's ironic that since my son has started going to his school (a little over a year) there are now about 6 kids on an allergy list that is posted in every classroom now! His best buddy has the same allergies as he does but much worse and a few more but didn't know it until I noticed his symptoms and referred them to our pediatrician.

I noticd that at the bottom of some of the posts there is info like how many children, when somebody was diagnosed, went gluten-free, or other medical conditions (like endometriosis for quite a few women). What is this and how do you do that?

I'm very interested in finding a homeopath that works with children. I think every avenue should be exhausted for my child's health and, perhaps, mine and my husband's too (he got it from somebody, right?).

I cried almost every day for the first 12 months of his life and twice a week or more the second 12 months. I still do from time to time but feel like I have a better grasp on the facts and more control too. Each day I yearn to learn more and here is where I feel I will learn a lot!

THANK YOU ALL AGAIN!!

Tomorrow will be a better day for all of us!

Carol

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Unfortunately, we can only use Cetaphil soap for him and occasionally J&J shampoo; anything else aggravates his eczema. Eucerin is his moisturizer. I don't see anything about gluten in it but how do I know? What about toothpastes? What about prescription and OTC medicines?

I noticd that at the bottom of some of the posts there is info like how many children, when somebody was diagnosed, went gluten-free, or other medical conditions (like endometriosis for quite a few women). What is this and how do you do that?

Carol,

I know it can seem incredibly overwhelming at first. You're doing a great job! Just realize that mistakes will probably be made at first... if they do, take a breath and move on. Every single person here went through, or is going through, a period of adjustment and learning. I've been doing this for a year now, and it gets much, much easier... although I still learn new things here all the time!

For the shampoos, soaps, and lotions-- don't forget to watch out for oat flour, oat extract, colloidal oatmeal, etc... This tripped me up at first. I was still giving my younger son Aveeno baths with colloidal oatmeal (for his eczema and butt rashes) for a couple months after going gluten-free, till one day it hit me... Here is a list of more things to watch out for in those types of products:

Avena Sativa (Oat) Kernel Flour

Cyclodextrin

Dextrin

Dextrin Palmitate

Hydrolyzed Malt Extract

Hydrolyzed Oat Flour

Hydrolyzed Vegetable Protein

Hydrolyzed Wheat Flour

Hydrolyzed Wheat Gluten

Hydrolyzed Wheat Protein

Hydrolyzed Wheat Protein/PVP Crosspolymer

Hydrolyzed Wheat Starch

Malt Extract

Maltodextrin

Secale Cereale (Rye) Seed Flour

Sodium C8-16 Isoalkylsuccinyl Wheat Protein Sulfonate

Triticum Vulgare (Wheat) Germ Extract

Triticum Vulgare (Wheat) Germ Oil

Triticum Vulgare (Wheat) Gluten

Triticum Vulgare (Wheat) Starch

Wheat Amino Acids

Wheat Germ Glycerides

Wheat Germamidopropalkonium Chloride

Wheat Protein

Wheatgermamidopropyl Ethyldimonium Ethosulfate

Yeast Extract

For medications, check out www.glutenfreedrugs.com

For vitamins, Flintstones is NOT safe. With his multiple allergies, I recommend looking at Whole Foods for a kids' vitamin that is free of his allergens. (We use a locally-made generic brand that is actually labeled gluten-free.)

For toothpastes, I know that the Oral B toddler toothpaste is not considered safe. We use either Oragel toddler toothpaste, or Crest Kids' toothpaste.

Also be aware that if he kisses you on the face, your makeup may/probably will make its way into his mouth.

The info at the bottom of some people's posts is called a signature. It can be a quote, medical info, whatever you want that is within board rules. Once you set it, it automatically is added to the bottom of all your posts. You can edit it anytime you want.

To add a signature to your posts--- Scroll to the top of this page and look about 1/2 way down. You should see a My Controls link in bold. Click that. On the left, there is a menu. Under Personal Profile, you'll see an option to Edit Signature. Click that to set up your signature. Also under Personal Profile is Edit Avatar Settings. Click that if you want to upload a picture that will post with all of your messages.

Hope this helps!


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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Carol,

I know it can seem incredibly overwhelming at first. You're doing a great job! Just realize that mistakes will probably be made at first... if they do, take a breath and move on. Every single person here went through, or is going through, a period of adjustment and learning. I've been doing this for a year now, and it gets much, much easier... although I still learn new things here all the time!

For the shampoos, soaps, and lotions-- don't forget to watch out for oat flour, oat extract, colloidal oatmeal, etc... This tripped me up at first. I was still giving my younger son Aveeno baths with colloidal oatmeal (for his eczema and butt rashes) for a couple months after going gluten-free, till one day it hit me... Here is a list of more things to watch out for in those types of products:

Avena Sativa (Oat) Kernel Flour

Cyclodextrin

Dextrin

Dextrin Palmitate

Hydrolyzed Malt Extract

Hydrolyzed Oat Flour

Hydrolyzed Vegetable Protein

Hydrolyzed Wheat Flour

Hydrolyzed Wheat Gluten

Hydrolyzed Wheat Protein

Hydrolyzed Wheat Protein/PVP Crosspolymer

Hydrolyzed Wheat Starch

Malt Extract

Maltodextrin

Secale Cereale (Rye) Seed Flour

Sodium C8-16 Isoalkylsuccinyl Wheat Protein Sulfonate

Triticum Vulgare (Wheat) Germ Extract

Triticum Vulgare (Wheat) Germ Oil

Triticum Vulgare (Wheat) Gluten

Triticum Vulgare (Wheat) Starch

Wheat Amino Acids

Wheat Germ Glycerides

Wheat Germamidopropalkonium Chloride

Wheat Protein

Wheatgermamidopropyl Ethyldimonium Ethosulfate

Yeast Extract

For medications, check out www.glutenfreedrugs.com

For vitamins, Flintstones is NOT safe. With his multiple allergies, I recommend looking at Whole Foods for a kids' vitamin that is free of his allergens. (We use a locally-made generic brand that is actually labeled gluten-free.)

For toothpastes, I know that the Oral B toddler toothpaste is not considered safe. We use either Oragel toddler toothpaste, or Crest Kids' toothpaste.

Also be aware that if he kisses you on the face, your makeup may/probably will make its way into his mouth.

The info at the bottom of some people's posts is called a signature. It can be a quote, medical info, whatever you want that is within board rules. Once you set it, it automatically is added to the bottom of all your posts. You can edit it anytime you want.

To add a signature to your posts--- Scroll to the top of this page and look about 1/2 way down. You should see a My Controls link in bold. Click that. On the left, there is a menu. Under Personal Profile, you'll see an option to Edit Signature. Click that to set up your signature. Also under Personal Profile is Edit Avatar Settings. Click that if you want to upload a picture that will post with all of your messages.

Hope this helps!

Thanks. We discovered very early that Aveeno actually worsened his eczema. I'll need to swing by Whole Foods and buy a new vitamin too. Because of his very limited diet he's actually been receiving twice the recommended dosage of his Flintstone's vitamin. I'll check out that website tonight to look for the meds that are okay.

I spoke to his pediatrician yesterday who stated the blood tests weren't reliable enough to determine if he has Celiac's. She referred me to a GI at Children's Hospital in Dallas. I'll be calling today to get an appoitment. We also see his allergist next Monday. However, his ped doesn't have a whole lot of faith in allergists. I lose faith every time they put him on another medicine. His ped thinks he may be experiencing steroid rebound now. His fingertips have become white, dry, and peeling. They are sore and half have begun to crack and bleed. She says its because he's been on topical and oral corticosteroids and steroids almost since he was born. Has anybody else seen this with their young ones? Should I take him to a dermatologist too? If I don't put the cream on his patches, they worsen.

Thanks again for the info!

Carol

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