DS MFPA diagnosis

[Anonymous]

I found this forum months ago due to my DDs reflux and intolerances and I’m sitting here in shock b/c of my DS. I always thought something was affecting him and now we know for 100%. He has been complaining of knee pains for quite some time now and finally I had the Ped run RAST testing in addition to all the other stuff she was checking out…

She called me today and told me that he’s ALLERGIC to Milk, Egg, Wheat, Beef, Soybean(peanut, almonds, all tree nuts). I thought he had a problem w/milk, but never in a million years would I have been prepared to here that! I don’t even know what to feed him now. She’s referring us to a nutritionalist, but I don’t know how long before we get seen. I’ve been trying to find a food store that deals w/allergen free foods(I’m checking it out tmrw). I cried earlier when I tried explaining to him why he couldn’t eat a cookie that he had helped Mommy bake yesterday. I just feel horrible that he’s gone all this time eating these foods that he’s allergic to on a dialy basis!

I’m freaking out too b/c I think, “What does this mean for Averi?”…The Ped thinks that Averi will be even more allergic. I know there are plenty of Moms on here who deal w/MFPI and some who deal w/MFPA…How do you do it? What do I do when it’s time for him to go to school? Am I overreacting?

Thanks for listening. Any Advice is welcome!!!

Oh, also forgot to mention…I asked about him getting tested for celiac(my aunt was just diagnosed and my Dad may also have it). Should I go this route? Or should I just make him gluten free w/o the testing? TIA!

[Anonymous]

Well the good thing is he can still have chicken, turkey, pork for protein and he can have all the fruits/veggies he wants… Wheat is a bit tricky but again if you do gluten free you are pretty okay there as well. I would hurry and buy some Ener-G egg replacer (it is wonderful) and I would probably pm Sheri (MFPIX2) as she has great information about baking gluten and casien free (chicken fingers, chcolate chip cookies) she has done it all. There is a thread on here that she posted awhile back that has some great information about different flour combos that work best for different types of things. Since he is allergic to both milk and soy then I would go with either rice milk/hemp milk or even potato milk but I think he will probably need a multi vit with all of those. Don’t worry about school hopefully he will be able to outgrow the milk and egg allergies before kindergarten which are pretty tricky. But just keep in mind that you have all of us to help support you and give you hope. HUGS to you… I know that was a shock to your system.

[Anonymous]

Thanks so much Beth! I’ve pm’d Sheri so I guess I’ll try searching for the threads in the meantime. Like I said before, I knew milk was a problem, but BEEF? Seriously? :)lol I just have to remind myself that, “This is great b/c now we have some answers & we make the necessary changes.” I plan on checking out that store today. Wish me luck! 🙂

[Anonymous]

have him tested for celiac BEFORE you put him gluten free or you will screw up any testing you might want to have done in the future and you might end up eliminating foods that you don’t really need to eliminate—and with his allergies, you don’t want to eliminate anything more than you already have too.

untreated celiac disease can lead to other food intolerances. it is definitely a good idea to test him since you know it is in your family. make sure that the right tests are done. he needs to have a total IgA serum test and a Ttg IgA (tissue transglutaminase). some docs may even run a few more than these—but a Ttg test is the most accurate test.

he is just reaching the age where the tests are more accurate, so your timing is pretty good. just make sure he is eating gluten when you have him tested.

hopefully, he is going to outgrow some of those allergies over time.

[hellbennt]

some ‘random’ info I have saved:

One of the most useful ones I think is Jax Peters Lowell, Against the Grain: the slightly eccentric guide to living well without gluten or wheat. It’s more of an informational book than a cookbook (though it does have some very good — and simple — recipes) but I found it quite useful for what to look for ingredients wise, what I could or couldn’t eat at restaurants, etc. from Christine, Palmer’s Mom https://www.infantreflux.org/forum/forum_posts.asp?TID=4225&TPN=2

http://www.celiac.com/index.html
http://www.csaceliacs.org/
http://www.calgaryceliac.com/

And some yummy gluten free blogs!

http://glutenfreegirl.blogspot.com/
http://glutenfreegoddess.blogspot.com/

gluten free casin free: http://health.groups.yahoo.com/group/GFCFKids/

amazing website for those with dairy allergies:(mspi)http://web.mit.edu/kevles/www/nomilk.html

http://www.kidswithfoodallergies.org/recipes.html

VegWeb – great site for getting egg/dairy free recipes. I’m not vegan so I add meat to some of the recipes .. but this is the best site I’ve found to get baking recipes that don’t use eggs and dairy.
http://vegweb.com/

gluten/celiac: https://www.infantreflux.org/forum/forum_posts.asp?TID=4988&KW=gluten

Egg replacer http://www.ener-g.com/store/detail.aspx?id=97

(yup)info about labels (hidden dairy, eggs, & more):https://www.infantreflux.org/forum/forum_posts.asp?TID=1292&KW=parve

great allergy-food site with a ton of good kid’s things…http://www.allergygrocer.com

[Anonymous]

Thanks Christine! I know that in order for celiac testing to be accurate he will need to be ingesting gluten. I guess I was just thinking, “Do I really need to put him through that or just take it out of his diet anyways.” What does the test entail? Do they take biopsies in order to test total IgA serum and Ttg IgA? He would have to be put under? I’m just nervous. I’ve read that anethesia contains egg and he’s highly allergic to eggs. Or do they just test the blood? :):)

Laura~ Thanks for all the helpful links. I’ve gone through quite a few of them, plenty of info. Although, I’m not much of a cook so some of the foods I don’t even know what they are, what they look like, where to find them. 🙂 lol Plus, the BIGGEST downside is that we don’t have a whole foods around here(or one like it). I found an allergen free store, but MY GOODNESS are they EXPENSIVE. I about died. I’m sure I’ll be posting about foods here shortly. First we need to find out what all he’s allergic to.

THANKS AGAIN!

[Anonymous]

amber, both of those tests are blood tests. they only do biopsies if the tests come back positive—-which is totally beyond me, because my girls didn’t show damage in their intestines. tianna did show some slight changes in one spot. i asked the doc about them not having damage, and he told that they probably did with their test result numbers. he also told me that the small intestine is about 22 ft. long and that the scope can only go in about 6 feet. also, celiac damage can be spotty, so if they don’t happen to biopsy a spot with damage, the biopsy will be clean. a positive Ttg test is almost totally exclusive to celiac disease, so if it is positive there is next to no chance that you don’t have celiac. plus, if you go gluten free and then do blood tests on a regular basis, you will be able to tell if the gluten free diet is lowering the Ttg levels.

i order gluten free flours in 25 lb bags from bob’s red mill. the price is alot cheaper than the small bags that the stores carry, but the shipping seems kind of high. someone recently told me that winco will order from bob’s for you in bulk and you don’t have to pay the shipping since they already order from them—i’m going to check it out soon.

a major diet change is so overwhelming at the start—but in time it becomes normal. celiac disease is not hard, but it is inconvenient.

[Anonymous]

phew, Good! I’m good w/just blood tests. 🙂 We haven’t been able to cut too many foods out yet. I guess we figure we need to know what ALL he’s allergic to before we go on a shopping spree of ridiculously priced allergen free foods. 🙂 I am, however, doing my best not to give too much of the same foods in a day or every couple days. Eggs are out of the question though, which he never liked them anyways. 🙂 So, I hope he gets tested again here in the next week or so. That way we can get things rolling. Thanks Again Christine! You helped calm my fears. :):)

[Anonymous]

Amber,

I just read this post & I’m sure you are still in shock, but like others have said – at least you KNOW what he’s allergic to so that’s so helpful!

I love this website:

http://www.allergygrocery.com/search.php

It lets you search for foods on their site by clicking on all the allergens you CAN’T have… so helpful!!! Then, you can buy from there. It’s not cheap, but it does have mixes & stuff so you can make cookies or bread or whatever. I know you said you’re not much of a cook/baker so this might be easier than from scratch (like Ms. Betty Crocker Sheri does-lol).

Also, check out Amazon for allergen-friendly foods.

Have you looked @ the Enjoy Life foods? He could definitely eat those & the chocolate chip cookies (& other kinds too) are pretty good!

HTH some

[Anonymous]

Thanks Erin! Yeah, I’m DEFINITELY NOT a Ms. Betty Crocker. 🙂 Too bad for Ryan, huh?! lol We have an allergy appt scheduled for tmr so hopefully they’ll be finishing up testing. If not, we’ll have to wait and see what else he’s allergic to.

[Author]

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