Feeling Very Frustrated

[dfish]

I need to vent. Hope that's okay. Was diagnosed with celiac disease about a year ago. After doing some research, didn't trust the doctor who diagnosed me. Did Enterolab, which stated that I showed evidence of "gluten sensitivity" but no intestinal damage. Took that to my doctor. They said "not full blown celiac, should still avoid wheat and gluten". Fine. That was hard enough. BUT, I got totally away from gluten for a year and still felt horrible. Went to another doctor. Suggested an allergist. SO, went to an allergist. After some initial confusion about the results (which are still confusing), results showed that I am allergic/sensitive to chicken, fish, shellfish, eggs, wheat, corn, soy and all other legumes, nuts, peaches, bananas, melons, citrus, celery, and carrots. SOOOO, I now cannot eat anything but red meat and potatoes, basically. Extremely frustrating and I spent about a week being very, very upset. Now all I eat is red meat and potatoes and apples and feel gross, bloated, and nutritionally deficient. Can't even take vitamins because they have corn binders in them. Thought my life was bad before with just gluten BUT, I have tried to have a positive attitude because frankly, this last year has been horrible and has resulted in my almost getting divorced and losing my job due to depression and anxiety.

OK, so I get a positive attitude, decide to try to live this way because it can't be any worse than feeling like crap all the time, right? So, I go to the store, spend tons of money on all of these specialty allergen free foods and mixes and flours and whatnot as well as meat and potatoes. Search for hours for recipes off the internet. Spend more time than I really have cooking. And, as peppy as possible, try to make these things so that I can have a somewhat "normal" life. And after attempting to do this several times, I only have one question: Who makes these products and who makes these recipes??????

I have bought a number of products from "reputable" and recommended celiac and allergy free companies and have spent a lot of money on this stuff, follow the recipes to a T, and end up with some kind of God-awful gook that I wouldn't feed my dog. Just this evening I went through 2 brownie mixes (total cost 16 bucks, ridiculous) only to find that one of the mixes stayed like dry powder mix and was useless and the other turned into an sticky, oily clump that wouldn't "glop" off of the spoon. When I did get it off the spoon, the brownies were so oily that, I'm not kidding, they were boiling in the oven. Boiling brownies???

And that's not to mention the hundreds of dollars I have already spent on supposedly tasty pizza crusts that come out like a brick, cookies that would make good hockey pucks, and muffins that you could block a car on. Or the hundreds of dollars I have spent on cookbooks that now I can't use because they all use soy or corn or xantham gum (corn-derived) or eggs.

I can't win and I was frankly a heck of a lot happier when I didn't know what was wrong with me, felt pretty crappy, but could eat. And I'm now at the point where I've decided that it's not the end of the world to just eat real food and take Immodium every day and feel tired and crappy. It's better than the anticipation, hope, expectation of something that I can eat that might possibly taste good and be different than the five things I can eat, the tears and disappointment when I find myself throwing my hope, time and money down the garbage disposal, and the utter despair I feel when I think about spending the next fifty years of my life this way. Is there anyone, and I mean anyone (not the regularly touted products that I've tried already and that have failed miserably) that makes multiple allergen foods that are remotely edible? And if not, if I don't have celiac disease and most of the foods that I am allergic to are not anaphylaxis causing (except eggs and nuts which I'm not finding so hard to avoid) is there any reason why I shouldn't just eat the d&*@ stuff and move on with my life? Help?

[frenchiemama]

That sounds tough, I'm really sorry.

So it sounds like you have a huge list of stuff that you can't eat. Maybe you should write out a list of things that you can eat. Can you eat rice? Plums? Onions? Peppers? Tomatoes? Quinoa? (those are just random things off the top of my head). Make a list off everything you can think of that you can eat and then look for some recipes that use those ingredients. Maybe spagetti with rice pasta? That's one of my faves. Right now I'm eating a dish made with whole quinoa and it's really good. Veggie soups?

I know that most gluten-free/allergy free baked stuff is gross. I have been through that myself, and I have been disappointed so many times that I just don't bother with that stuff anymore. I have found several things made by Ener-G that are pretty good, but I don't know how they would fit into your diet.

The other thing I would do is to wait until you are feeling better and then slowly try some of the foods that you tested allergic too (like some of the fruits). You might find that they don't bother you any more after your gut heals.

[Guest katzmeow21]

Well, I hear you! I have exactly the same problem right now. Allergic to corn, green beans, carrots, beef, tomatoes, raspberries.... and the list goes on and on.

The answer from my naturopath is that all these allergies are due to intestinal permeability ie"leaky gut syndrome". He says if I can stay away from all the foods that are allergens for 2-3 months and eat SMALL quantities of foods I can have then the stomach lining will have a good rest and heal. You can also take L-glutamine to help this healing. (this has not so much to do with our celiac problem and we will always , of course stay gluten free) but the other foods you are sensitive to now should back off over time if you give yourself a break from all of them. Then we can slowly one at a time introduce them back in and see how we do. Keep these items on a rotation after you start them again so you don't eat them every day and the sensitivity should lessen. As for corn, soy, dairy I think many of us celiacs continue a sensitivity to one or more of these which is not fun as corn and soy are huge substitutes. I am preaching to the choir here but know you are not alone in this adventure. Keep it simple and I think making a list of what you can have in the form of vegetables and little bits of meat are what we should stick to for the most part and try to forget cookies, breads etc, in any form for a while. I know, easier said than done.... Keep your spirits up

mj

[dfish]

Thank you for the ideas and kind words! It's funny because when I look at the list of things I can't eat, in the whole world of food and cooking, I can honestly see that it's not that much compared to what I can eat, and I've tried to keep that positive attitude. I also suffer from hyperinsulinemia, so I have to have protein with every meal, but when I can't eat any legumes or meats other than red meats, as well as eggs, that keeps my protein options pretty limited. It's even questionable about whether or not I can eat dairy, but I can't have a protein-less diet, so I eat dairy and just worry about the "consequences" later. Just eating rice and veggies at one sitting is not an option for me because of my insulin problems. But making a list of what I can eat is a great idea. It's just very frustrating because I am a cookie/brownie/cake person and it's extremely difficult to think about never eating these again. Just yesterday at work I had to bypass a morning meeting full of cinnamon rolls, scones, and muffins and a lunchtime birthday cake. The cravings made me unglued after walking by all that stuff that I love and can't eat. Thus, my failed brownie attempt when I got home.

Carolyn, you stated that you stopped buying mixes. Do you still bake? If so, how? Is it possible to just substitute a general gluten free rice flour mix (although I can only use rice, potato, and tapioca flour, not soy or bean flours for me) and egg replacer into some general recipes? As a person who works sixty hours a week and attends grad school, all this "from scratch" cooking and baking is taking it's toll, but I'm willing to do it if I could just have a freakin' brownie!!!

I'm also really interested in finding out more about this "rotation" idea. That is what is so confusing about what the allergist said. There are several things that he said "avoid completely", mainly eggs, bananas, peaches, celery, and all nuts, because those I tested the highest sensitivity to and eggs and nuts can cause anaphylaxis (I now have to carry an Epipen around with me and constantly think about my own mortality every time I put food in my mouth, lovely). But, with respect to the other stuff, including wheat, corn, soy, etc, he told me to eat them "as tolerated" because I only tested slightly more allergic to them than I tested to the saline solution control. What does "as tolerated" mean? I am also seeing an acupuncturist who has advised me that, after several months of acupuncture, I may be able to tolerate those foods again in small doses. How confusing? How does one "rotate" their diet when a lot of foods contain several allergens at once (ie a food with wheat, corn starch, and soybean oil all in one)?

Thank you so much for your replies! It's so nice to not feel alone!

[frenchiemama]

I don't really bake. My mom does from time to time though, and she got a really good gluten-free cookbook (I think the name has "Comfort Food" in it, but I'm not sure). Anyway, a couple of weeks ago she made me a poppyseed cake using her regular recipe and just substituting in a gluten-free baking mix (from the book, I think it's called "feather light" or "feather weight"). It tasted JUST like the regular version! Even other people couldn't tell the difference.

Do you have any gluten-free cookbooks? If not, you might be suprised at how good some of that stuff really is. My mom made me potato bread once and it was really good (doesn't last though, it's really only good the first day) and I have an easy recipe for pumkin bread that I got from Shreve Stockton's book that is quite good and doesn't take very long.

About protien, can you eat pork and ham? Turkey? That might provide a little variety at least. How about spinach? I eat spinach salads all the time, you could make a chef salad for protien.

[tarnalberry]

Just eating rice and veggies at one sitting is not an option for me because of my insulin problems.  But making a list of what I can eat is a great idea.  It's just very frustrating because I am a cookie/brownie/cake person and it's extremely difficult to think about never eating these again.

It may be time to get very creative about substitutions, and be willing to change your tastes a bit. But there have been a lot of people on th board who've listed brownie mixes that they like a lot. One thing to consider, with brownies, is exactly what it is you're looking for and what you're making. I'm a very chocolaty, moist brownie fan, so the raw brownies I make work for me. (They've got nuts, so wouldn't work for you.) If you're looking for something very light, it will be more difficult without eggs, as they help to provide the structure for brownies and cakes once the leavening agents have helped those items rise. The same thing holds for cookies. (Flax meal may be an acceptable substitute for you to use to partially address this issue.) The technique you use is also very important (creaming sugar/butter for a lighter effect, using melted butter or oil for heavier items) as well. I guess it all boils down to the fact that you can make tasty items here, once you get the hang of it, and once you figure out what flours/tastes in the gluten-free range that YOU find acceptable.

Is it possible to just substitute a general gluten free rice flour mix (although I can only use rice, potato, and tapioca flour, not soy or bean flours for me) and egg replacer into some general recipes?  As a person who works sixty hours a week and attends grad school, all this "from scratch" cooking and baking is taking it's toll, but I'm willing to do it if I could just have a freakin' brownie!!!

Yeah, for some recipes, that works just fine. The banana bread recipe I've used holds up well to most flour mixes I throw at it, but it's got eggs. I would certainly give it a try for brownies, keeping technique and texture issues mentioned above into consideration. (I'm assuming this doesn't actually apply to *cooking* (as opposed to baking) as there are a lot of types of food that don't call for flour, or only use flour as a thickening agent where a simple single-flour substitution works.

I'm also really interested in finding out more about this "rotation" idea.  That is what is so confusing about what the allergist said.  There are several things that he said "avoid completely", mainly eggs, bananas, peaches, celery, and all nuts, because those I tested the highest sensitivity to and eggs and nuts can cause anaphylaxis (I now have to carry an Epipen around with me and constantly think about my own mortality every time I put food in my mouth, lovely).

...

How confusing?  How does one "rotate" their diet when a lot of foods contain several allergens at once (ie a food with wheat, corn starch, and soybean oil all in one)?

I'm a little confused by this... what type of allergy testing was done? IgE or IgG? If it was IgG, then you're not going to get an anaphylactic reaction. If it was IgE, then it makes sense. (IgE testing is usually done via a scratch test and possible subsequent subdermal injection of a few of the allergens. IgG testing is usually done via a blood draw test.)

As for the rotation, if (referencing what you said later) you include items you have a lower sensitivity to, it just means you rotate them in and out of your diet. So, for instance, if there are 21 foods you can eat whenever you want, you split them up a bit so you don't have the same one many days in a row (some people it's one day, some it's two, it varies). If there are 7 foods you can eat occasionally, you might have a different one each day of the week, so you're only eating each of those foods once a week.

If you decide to do a rotation diet, I'd encourage you to do some research (internet and library/bookstore), and a lot of planning so that you're prepared and don't feel deprived. They can be useful, but they can be tough until you get in the groove.

But, with respect to the other stuff, including wheat, corn, soy, etc, he told me to eat them "as tolerated" because I only tested slightly more allergic to them than I tested to the saline solution control.  What does "as tolerated" mean?

It means that you can eat them as much and as long as you tolerate them. If you don't get symptoms, if you don't get a reaction, if you don't notice any adverse effects from the food, eat it. If eating large quantities every day of the week causes symptoms, then eat it less and less often until you don't notice any symptoms. (For instance, milk, for those with mild lactose intolerance, may be tolerated in the form of a piece of soft cheese every day. So eating it every day would be "eating it as tolerated.)

[Guest Viola]

If these things are not a major allergy ... by that I mean, swelling big time and emergency type allergy. I would recomend trying accuppuncture for allergies. I had my food allergies, the same ones that you mentioned treated in Calgary with lazer accuppuncture and heat, at a clinic specializing in such treatments, and had great luck with it. I even had my nickle allergy treated, and haven't had a rash since and wear a watch with metal band and necklaces that I could never wear before.

Do be careful though .. if you are diagnosed Celiac and the allergist tries to tell you that you will be able to eat gluten afterward, go and look for another allergist. Celiac is NOT an allergy, no matter how much the word is used to describe the disease.