W have been having a long term problem with my 14 y/o daughter. She has had problems ever since she had Mono 2 years ago December. For some reason, it took the Drs quite awhile to determine that what was wrong with her was mono. she just didn't present with the most common symptom of a very sore throat. She briefly had the sore throat and then progressed into dizziness, extreme fatigue, low blood pressure and low blood volume. We were very lucky that she was in an understanding private school and she did much of her work from home as necessary.

Since that time she has had bouts of fatigue, low blood pressure, dizziness and general malaise. the drs couldn't figure out what it really was. Their main diagnosis was that she just kept catching new viruses and that her immune system was down after having mono. Probably true but it wasn't the whole story

I finally got disguested with standard western medicine and took her to an integrative medicine specialist. Well a crap load of tests later.....not only does she have reactivated virus in her system but she is allergic to many foods. Gluten(has half of the celic profile), Soy, fish and dairy (the dairy protein not just the dairy sugar). The Dr. said that with this many food allergies compromising her system, that it was complicating her beating the virus down into submission.

I am now trying to get up to speed fast in cooking appetizing foods for her. Thank God we have a whole foods just down the street from us I was really excited to see the black bean brownie recipe and can't wait to try it.

So, the end to a long post.....do any of you have any tips, advice, comments....etc. that would help me?

Eileen

Can't offer much...our good friend's son was diagnosed with ceilc and her godsend is Whole Foods....

Our oldes had a dairy allergy from the get go but that was long befoe allergy awareness...

Google for support groups? They would have good ideas for food options I would expect.....

Can't offer anything but sympathy. But at least now you know what you're dealing with! Learning how/what to eat will probably be a time consuming endeavor, but hopefully it will pay off in feeling better!

Good luck!!

Good luck with that. Food allergies are a pain.
Wait people are always amazed when you don't want cheese, even those who have been at it for years.

Hi Eileen,
My son had a severe milk allergy when he was younger. He, too, was allergic to the milk protein - and we couldn't identify which specific one. Then he developed an egg allergy as well. Because of that, we were told to be careful about the amount of soy and wheat in his diet, since sometimes those allergies develop after the egg allergy. We were able to navigate our way through and now he has no signs of allergies at all. I tell you this simply so you know that I understand the problems your facing.

You probably already know this, but there are dozens of different names for milk products. Even some cheeses labeled as "vegan" are not truly dairy free, as they contain casein. We did find one rice "milk" cheese that was safe, but it barely resembled cheese. So my first piece of advice is to become an avid label reader, but also to recognize that many of the commercial "substitutes" aren't worth bothering with because they're horrible. There are a few good ones out there, but they are so hit and miss and so cost prohibitive that I'd save them as a last resort. Also, it's amazing what foods that you would expect to be safe contain other things. Soy has been added to foods that it has no business being in. So has wheat, baking soda (which isn't always gluten friendly) etc. So even if it's something that should be safe, always read the labels.

Are there any other allergies besides gluten, soy, fish, and dairy?

The second thing I'll mention (and you may know this as well) is that some products have a powder coating the packaging (cereals are notorious for this, but there are others as well). Usually the coating is cornstarch, but I can't tell you with 100% certainty that some companies don't use a gluten-containing product for this purpose. They are NOT required to note this addition on the label, as it is technically not part of the food, but part of the packaging. So depending on the recommendations of her allergist, the severity of the reaction to trace amounts, etc, you may want to do some research on that. You may find that it's not a danger at all - as I said, I'm not positive whether any gluten products are used for this purpose - but it's worth checking.

Another thing that you may already know, but I'll share because I found the analogy helpful, is the "full bucket" theory. This was passed along to me by Liam's allergist when he developed the egg allergy. The theory is that the reaction our body has to allergic foods will build up over time. So, for example, someone may be very mildly allergic to a few foods. But if they eat a lot of those foods (and with things like wheat and dairy, it's almost unavoidable unless you're actively staying away from them), then the body slowly builds up more and more of the response to the allergen. In other words, every bit of wheat/dairy/soy that one eats adds another drop to the bucket. The person doesn't notice anything - there may be no signs at all - until the bucket fills up and overflows. And then they will start reacting to all sorts of new things, have more violent reactions, etc. And illness can contribute to the bucket filling up. That might explain why the Mono seems to be the springboard for these problems. The good news is that if you can empty the bucket through complete avoidance of those foods, then you might get a clean slate. She'll likely always test positive for those allergies, but accidental exposures might not cause any problems at all. Or she might stop reacting to certain foods. That's what happened with Liam - very conscientious avoidance for two years, and suddenly his very severe milk allergy just disappeared. So emptying that bucket by avoiding as much as possible is your main concern.

Now, for some happier news. There is so much awareness for allergies now that it's much easier than it was even 8 years ago when I was trying to deal with this. I'm amazed at the products I see in the regular grocery now which would have been so helpful to have around then!

If you haven't already tried it, quinoa is a fantatic grain. It's a nice switch from rice, has a lovely nutty flavour, and is chock full of nutrients. Give it a try!

Calcium fortified OJ is one great substitute. But also remember spinach, rhubarb, white beans, broccoli, sesame seeds, bok choy, and almonds. All fantastic sources! That said, I would suggest looking for a gluten safe multi-vitamin (I'd be suspicious of fillers!) formulated for women to ensure she's getting the nutrients she needs. Your allergist may be able to make a suggestion.

This blog (it's been mentioned here before) was written by a woman who decided to use her slowcooker every day in 2008. She has almost 400 recipes on the site. And her daughter has celiac, so most are gluten free. She's also very conscious about allergies, so she often gives recommendations. She also has some links to gluten-free sites. Definitely worth checking out! http://crockpot365.blogspot.com/
She speaks specifically about being gluten-free here, and gives her story and some links: http://www.totallytogetherjour...com/glutenfreedness/

This site has quite a bit of "evil dairy farmers" propaganda, but it also has some great dairy free resources. From the quick look I took, they've added some gluten-free dairy-free resources as well. There are also some book recommendations: http://www.godairyfree.org/

One more thought: there is a growing community of folks who have found that a GFDF diet is helpful for children with autism. I won't speak to whether I think they're right, BUT it does mean that there's quite a few links out there that have some info on GFDF eating. This might work in your favor!

Good luck with it. It's a difficult thing to deal with - and probably harder for a teen who is used to eating these foods. But it's possible, and there is tonnes of support, cookbooks, etc, out there to help!

My kids had bad milk allergies when they were younger - they also didn't manifest in a typical way, and so it took us over a year to figure out what was wrong with LL#1. From the time she was born, she threw up all the time, refused to eat anything, and ended up "failure to thrive" because she didn't eat, and what we did manage to get down her, she threw up. We had tried soy and other formulas and she didn't seem to be much better on that, so we never suspected a milk allergy. But when we tried to move her to whole milk at age 1, she threw up for days after her first sip - that's when it began to dawn on us.

Anyway, the point is that I took LL#1 to tons of allergists, had skin and blood testing done, and was repeatedly told that she was not milk-allergic - couldn't possibly be, because the tests were all clear. Finally, our feeding specialist recommend an allergist about an hour away from me who was more open-minded. She said that tests are often unreliable and that food allergies manifest in a lot of weird ways that doctors don't understand, and that the only way to really figure things is out is to keep a diary of what is eaten and what symptoms are experienced. I kept it all in an excel spreadsheet with the date and time of everything. We had to cut out almost everything out of her diet for 2 weeks, then slowly add things back in to see what happened. It was painstaking and hard to do (she already barely ate anything, and now I had to take away most of the foots she would eat) but worth it - we figured out a lot of the foods that were bothering her and they were things I never would have suspected (kiwi??).

So anyhow, I was lucky in that we only had to avoid milk for her and milk and soy for my son, never wheat or egg - that must be a hundred times harder. Our allergist did point us to a good site for gluten free/casein free eating - it's a diet that is commonly used for autism and other behavioral disorders and she recommended we try it for LL#1's feeding issues, as it has been shown to help with a lot of weird medical probs. We never did try it, simply because she was already so picky and eating so little and we couldn't imagine how we'd get the whole class of "gluten" foods out of her diet and still have her survive. But the site is still good, and very educational with regard to atypical manifestations of food allergies in kids. The site is http://www.gfcf.com/ and they seem to have a lot of recipes there.

Good luck!