Milk free??

[Devynnsmom]

My 11 year old daughter was diagnosed *unofficially* with Crohn's in Dec 09 when she was 8. Another colonoscopy and endoscopy were done in Feb 12 and she was diagnosed with mild ulcerative colitis. She has had issues with her tummy etc since she was about 18 mos. Up until now we had a family doctor, but today we saw her new pediatrician for the first time. She was VERY thorough (2.5 hrs with her) and has decided to run a bunch of tests. She said Devynn was never checked for lime disease, h- pylori, and a few other things. She took 10 vials of blood , urine, stool culture and has ordered a few other tests. She said she is trying to rule things out because although some of Devynn's symptoms are def colitis symptoms, her latest colonoscopy and endoscopy looked good (which was not what I was told). She has only had blood in her bms a few times, and she said that is uncommon. She has asked us to stop all milk and milk products (she said dairy, but eggs are fine) until we go back on Oct 17. She also wants her to take Bio Gaia (pro biotic tablet) for the month. She said a lot of her symptoms could be as simple as a milk allergy. She has never been tested before.
Does anyone have any tips for going dairy free? She said to watch labels for milk, milk products, whey and casien. She is very upset (to put it mildly) about stopping milk. She is allowed to drink soy milk, almond milk or rice dream. Is there anything you would recomend, or avoid? :sign0085:
Thank you in advance

 

[my little penguin]

Please if it's a true milk allergy then she would need to avoid all traces of milk.
Here is a link to parents if kids with food allergies
Www.kidswithfoodallergies.org

http://www.kidswithfoodallergies.org/resourcetopic.php?topic=basics
http://www.kidswithfoodallergies.org/resourcetopic.php?topic=diagnosis-testing
http://www.kidswithfoodallergies.org/resourcespre.php?id=37&title=Milk_allergy_avoidance_list
http://www.kidswithfoodallergies.org/guide_to_parenting_child_with_food_allergy.html
http://www.kidswithfoodallergies.org/resourcetopic.php?topic=gastrointestinal-disorders







They have resources on how to be milk free. They have recipe database for almost anything you would want to make
Soy milk some brands would be cross contamination with milk since dairy is run on the same lines.
Fleishmanns unsalted margerine is a safe for milk allergy in the us.
In the us the top eight allergens ( including milk) must appear somewhere on the label.
You need to call companies to determine if they label for things produced on the same lines or the same facility . " may contains" and " made in the same facilities as" are voluntary on labels and lack of them does not necessarily mean it is safe.
I would strongly recommend having her see a Ped. Allergist.
Your Ped probably ran a RAST test( blood test ) and the level if IgE antibodies in the blood indicate if your child may or may not have an allergy to milk.
Only if she has a strong history and positive blood test as determined by an allergist.
A lot of atopic kids test positive by blood for many foods so it is no longer recommended to pull food based on tests alone.
You can have allergic colitis which mostly occurs in infants.
In that case you would need a Ped Gi .
Just to muddy the waters
Did they look for EOS in her biopsies ? If so ask for the count .
EGID disorders eosinophilic Colitis is one of them
Here is a link to APFED

http://apfed.org/drupal/drupal/index.php

Another thing you may want to have the slides stained specifically for mast cells since normal stains would not pick them up and would look normal.

We are milk free right now but only for Ibd not allergy.


Food ideas
Oatmeal with maple syrup
Milk free bread
Tacos with meat rice. Hold cheese
Later you can add soy cheese but it takes time to forget the taste.
Hot dogs typically contain milk - I think Applegate farms are dairy free
Watch out for lunch meat
Meat does not have to follow the same rules as food
Neither does drugs many have hidden milk


Hugs pm me if you need more

 

[kimmidwife]

Hi Samantha,
I feel for her. I had to go milk free while nursing two of my kids for one year. It is hard. Check the back by the ingredients it will usually say may contain dairy that is a good way to look for dairy ingredients.

 

[jmckinley]

Sounds like you have a great Dr! Congrats on that!

Milk free is tough. I had to be milk free when Ryan was a nursing infant. Then he had to be milk free for 2 years. I wonder sometimes if milk isn't still our problem.

Read labels!!! You won't believe the products that will have sodium caseinate or whey as a thickener...spaghetti sauce, cookies, crackers...so many things. I remember that those cookies by pillsbury with the holiday shapes in the middle didn't have any then. But most processed foods may have it. We get a spaghetti sauce in the gluten free section that has no additives.

Now, Ryan drinks chocolate almond milk. It is very chocolatey, so I buy plain almond milk also and mix the two or make ovaltine with the plain almond milk. We have also used the soy mozzarella to make homemade pizza. Not too bad, but it doesn't melt as well.

Soy milk has estrogen too, right? I don't know what kind of effect that would have if any, but it's worth a thought.

 

[Jennifer]

I was brought up on Lactaid after my diagnosis. Wasn't bad. As mentioned read labels but chances are it'd be best to make everything yourself and just not add cheese or any other pre packaged ingredients. That's what my mom did.

 

[Devynnsmom]

Thank you all for the replies. My little penguin, thank you for the links, I will look at them tomorrow.
Now that I've had the evening to think about the visit today, I'm a bit confused on something... She has asked me to stop all milk and milk products AND start the probiotic.. how will we know which is actually working? Stopping milk, or using the probiotic?

 

[Sascot]

Good luck with the milk free! I did that for my daughter for a month and it actually wasn't too bad. Don't know what it's like over there, but here there seem to be more and more products milk free - the section in the cold aisle at the supermarket is getting bigger and bigger. I know we used soya yoghurts, soya margarine and there are quite a few "milk free" milks (rice milk, almond milk, soya milk). If the milks don't taste nice, then you could add flavourings to it.
I have a also made sponge cake without milk/butter by using the soya margarine instead and it tasted lovely. At our local health food store they also have a section with dairy free chocolates.

 

[jmckinley]

You could always add milk back and see what happens to test what is working. But I'd say if you do both and it works, stick with it! We don't really miss dairy all that much. When Ryan does have a little dairy, I can tell!

 

[dannysmom]

Danny stopped Dairy almost 3 years ago ... and he used to drink 6 cups a milk a day as he loved milk. After a couple of days, it was not that hard for him. Blood allergy testing did show he was highly allergic to cow's milk and casseine ... but these tests are not considered reliable by many doctors. Our GI also recommended trying dairy free at the same time the alternate allergy doctor did. We did not notice any benefit from it. After about 9 months, Danny tried drinking milk again and did not like it at all ... quite surprising for us. Sometimes he can tolerate dairy (ie very occasional mozarella sticks) yet other times it does make him feels worse (and could even sense the casseine in some EN drinks)
My point, good luck ... maybe it will not be that hard once she gets used to it.

 

[Devynnsmom]

Thank you all. I went out on a search for yogurt and pudding today and did find soy yogurt. I didn't buy it ($5 for 4 puddings) incase she wont even try it. I told her about it and she said no way, but we will see in a few days Milk and cheese will be the hardest because although she doesn't really drink a lot of milk.. she likes it in the morning with breakfast and a mouthful for pills.
We got a call back from her new ped today and they have booked her for the Breath Hydrogen ( http://www.webmd.com/digestive-disorders/hydrogen-breath-test ) test already! She has it on Oct 10 and 7am.

 

[Catherine]

Sarah has had this test done. Do you have follow a special diet before the test. In Melbourne they do a control test using lactulose first. Sarah is lactose intolence. She no longer drinks milk.

I also a problem with milk it gives me heartburn.

 

[Farmwife]

Grace has been milk free since 3 mo. old. She was put back on it for a few months but after all her problems lately we took her off it again. Sadly no change as of yet.

:ghug:

 

[Devynnsmom]

Catherine, the only restrictions (other than her being milk free for the month) is no antibiotics 2 weeks before, and she has to fast the night before with nothing to eat or drink in the morning.

 

[Devynnsmom]

I'm sorry Grace is having problems I hope you figure it all out soon. Devynn loves milk, yogurt and cheese. Yesterday was day 1 and it wasn't quite as bad as I thought it would be. She REALLY wants a glass of milk though