Celiac Disease, Vegan, And Allergic/sensitive To Everything Else - Help

[SonjaRebecca]

I'll try to make this post short and sweet and to the point - This post may be very unorganized, my thoughts are everywhere, I apologize ahead of time if it is.

 

   I was FINALLY diagnosed with celiac disease 7 years ago (after 6 years of going to so many different doctors trying to find one that would listen to me "Yes, I know my body, No, it's not stress, STOP doing the same tests that have already been done, etc.") I've been gluten-free ever since. About 4 years ago I became vegetarian because I didn't ever eat meat, I didn't like it. After being a vegetarian for 3 years, I went raw-vegan...did that for about 6 months ... had some personal stuff going on in my life, ended up becoming just vegan. And I've been vegan ever since! (Jan 2012) Throughout the past 7 years I would randomly have more digestive issues (same symptoms I had before I was diagnosed with celiac). At first I just thought it was due to cross-contamination somewhere (I was married to someone who ate lots of gluten). After we split, I lived alone and there wasn't a speck of gluten in my apartment. But I was still having the issues. About a year ago it became more and more...eventually it was happening after I ate anything. I was frustrated. The doctors kept telling me it was heartburn..(oh here we go again I would say to myself - they don't ever listen) I humored them, took antacids (no relief), Oh, it's IBS (yeah, sure it is, just like it was IBS the first time I was diagnosed so many years ago), You don't have enough fiber in your diet (I eat fruits and vegetables...bs I don't get enough fiber), yet again, I humored them and took more fiber...Then they sent me to a nutritionist, you're not getting enough protein...Oh for cryin out loud, I take protein supplements, I get plenty of protein! (I've been tracking my diet for almost 2 years now). 
Anyway, I went to see a holistic doctor...they did a food sensitivity test for me...>Come to find out I have a LONG list of sensitivities...YEAST being one of them. (along with other fruits, vegetables, and other things that I wasn't eating) So I started going yeast free...that led to me getting extremely frustrated because I was STILL feeling sick after months of this and I developed an E.D. (that's another story I won't get into). I've recently gone to see an allergist (2wice now) and have come up with some allergies I didn't know I had...Almonds, mushrooms, peanuts, coconut, etc. She told me to stay away from all nuts. Okay, great...so now what?

THIS is where I need help...I have been eating about the same 10 foods for I don't know how long now...and I'm sick of it. 
I have my list of foods I cannot have....I feel like it's longer than if I made a list of foods I can have. :/ 
I'm trying to find new foods that I can add, recipes, but everything calls for something I can't have and I'm just at a loss...
Vegan is the only thing I have in my diet that is my choice - and no, I will not change that.

[cyclinglady]

I'll try to make this post short and sweet and to the point - This post may be very unorganized, my thoughts are everywhere, I apologize ahead of time if it is.

 

   I was FINALLY diagnosed with celiac disease 7 years ago (after 6 years of going to so many different doctors trying to find one that would listen to me "Yes, I know my body, No, it's not stress, STOP doing the same tests that have already been done, etc.") I've been gluten-free ever since. About 4 years ago I became vegetarian because I didn't ever eat meat, I didn't like it. After being a vegetarian for 3 years, I went raw-vegan...did that for about 6 months ... had some personal stuff going on in my life, ended up becoming just vegan. And I've been vegan ever since! (Jan 2012) Throughout the past 7 years I would randomly have more digestive issues (same symptoms I had before I was diagnosed with celiac). At first I just thought it was due to cross-contamination somewhere (I was married to someone who ate lots of gluten). After we split, I lived alone and there wasn't a speck of gluten in my apartment. But I was still having the issues. About a year ago it became more and more...eventually it was happening after I ate anything. I was frustrated. The doctors kept telling me it was heartburn..(oh here we go again I would say to myself - they don't ever listen) I humored them, took antacids (no relief), Oh, it's IBS (yeah, sure it is, just like it was IBS the first time I was diagnosed so many years ago), You don't have enough fiber in your diet (I eat fruits and vegetables...bs I don't get enough fiber), yet again, I humored them and took more fiber...Then they sent me to a nutritionist, you're not getting enough protein...Oh for cryin out loud, I take protein supplements, I get plenty of protein! (I've been tracking my diet for almost 2 years now). 

Anyway, I went to see a holistic doctor...they did a food sensitivity test for me...>Come to find out I have a LONG list of sensitivities...YEAST being one of them. (along with other fruits, vegetables, and other things that I wasn't eating) So I started going yeast free...that led to me getting extremely frustrated because I was STILL feeling sick after months of this and I developed an E.D. (that's another story I won't get into). I've recently gone to see an allergist (2wice now) and have come up with some allergies I didn't know I had...Almonds, mushrooms, peanuts, coconut, etc. She told me to stay away from all nuts. Okay, great...so now what?

THIS is where I need help...I have been eating about the same 10 foods for I don't know how long now...and I'm sick of it. 

I have my list of foods I cannot have....I feel like it's longer than if I made a list of foods I can have. :/ 

I'm trying to find new foods that I can add, recipes, but everything calls for something I can't have and I'm just at a loss...

Vegan is the only thing I have in my diet that is my choice - and no, I will not change that.

I've had food allergies for years.  When first diagnosed in '95, I was highly allergic to almonds, cow's milk, garlic, mushrooms and eggs (both immediate and delayed reactions).   The first thing I did was to eliminate those foods that I tested high and then I took all the foods that I could eat (even the ones that I had mild reactions to like rice) and divided them up into a four day rotation list.  I mostly ate whole foods because I honestly didn't have time to cook and I was so ill, that I didn't worry about recipes.  I was on the rotational diet for about 8 months to a year!  I always started my diet in the evening (the time I could cook) and then pack my lunch for work the following day.  

 

If you continue to eat the same foods over and over, chances are you'll develop more allergies!  You need to calm the fire.  Eventually, you might be able to introduce those offending foods again into your diet.  I can have a little dairy once in a great while as long as it's on the winter.  Once the pollen hits in Spring I'm toast!  I can now eat eggs in baked goods only.  Unfortunately, the garlic allergy has become worst, so I avoid it completely.  

 

Read up on food rotations and candida (yeast infection).  You might have a candida issue since you are allergic to mushrooms (fungus) and yeast.   

 

Good Luck!  

[1desperateladysaved]

Sorry, you suffered so long without a definitive diagnosis.  I am glad you are making headway.  I second what Cycling said about the rotational diet.  It helped me with a number of intolerances.  I took a 6 week rest from everything that I had antibodies to, but just now I am adding things back one every four days.  A number of years of celiac without treatment has given us trouble.  I have also been helped by supplements including Pancreatic Enzymes.  Have you done those?

 

Feel free to ask more questions

 

Diana

[Ksee]

I certainly can relate because I still haven't been successfully allergy tested. I test positive to even the solutions, syringes, topical antiseptics and maybe the metals in the needles.

I wouldn't try to convince you to eat anything you didn't want but there are a couple of things that are difficult to manage on a vegan diet. Someone mentioned protein and I'm sure your right, you are eating enough protein but maybe they were not being precise. It's hard to get complete Amino Acids on a vegan diet and in your case may be even harder with your limited food list. May I suggest a nutritionist specific to vegan-ism? Complete amino acids are required to build proteins from muscle to hormones and without enough you will feel badly. This is, in fact, the biggest reason people return to eating animal proteins, it's difficult to manage without education.

What symptoms are you having that prompt the encouragement to increase fiber?

What foods are you now eating? Do you prepare your own food? What is your skill level? 

These are the same things I'm working on right now, I would be happy to share.

[Renaye]

I am gluten free, doctors are undecided whether I am celiac. I also have sjogren's too. After I started my gluten-free diet I also uncovered more food sensitivities. I went to a naturopath and discovered sensitivities to peanuts, eggs and dairy. It is very difficult and depressing. I have a modified vegan diet. I eat rice or corn noodles mixed with olive oil, vegetables and meat. I use a lot of seasonings. Strange though, I miss eggs because you can't find good gluten-free bread without eggs. You can't substitute anything for scrambled eggs.

I google vegan diets a lot and find some recipes. I also found some good substitutes for basic sauces and seasonings. I need good ideas for snacks as I eat light due to barretts syndrome and like to have several snacks during the day. It takes time....Let me know if you are looking for something in particular, maybe I can help.

Renaye

[Juliebove]

I hear ya.  Although gluten isn't a problem for me, there are a lot of other foods that are.  I do eat some meat.  Not so much by choice but there are so few foods that I can eat and I also tend to go anemic if I don't.  I can not have eggs or dairy and this led me to raw vegan which ultimately didn't work for me because I have gastroparesis.  Sad because raw veggies are one of my favorite foods.  I also can not have some nuts.  And sadly my health food store closed.  They were able to get nuts that were safe from cc with other nuts.  I can find them online like this but they can be expensive.

 

I suppose you have likely tried eating things like chia seeds, flax seeds, hemp and  other seeds?  For a while I was buying raw, vegan pumpkin seed bars.  I loved them but eventually got burned out on them.

 

Right now the big staple in my diet is beans.  They do have protein in them and although they have fiber, they don't seem to upset my stomach.  But like you, I am starting to get sick of eating the same foods over and over.  I have tried experimenting with seasonings but I am intolerant to some of those so that can be a problem too.  I can also see how this could easily lead to an eating disorder.  There are plenty of times when I just don't want to eat.

 

I did have an eating disorder as a teen but not a typical one.  Came about from a bad stomach problem, the cause of which was never ferreted out.  I could not keep any food in me for two solid weeks and in the end, I just opted not to eat.  Which obviously does not make for being able to live!  Hehe.  I'd even had a problem with grape juice so I wouldn't have any juice either.  I did have occasional broth.  That didn't seem to bother me.  Plain coffee, plain tea, water or diet soda.  Was fearful to even drink anything with sugar or calories in it.  Yes, I know that broth has calories but not really enough to count.  I do not want to go that route again.  But there are days when I am sorely tempted.

 

One thing about food intolerances is that you can sometimes outgrow them.  I did and daughter did too.  But I was warned that at my age (I'm 53 now), I should not go back to eating those foods.  But I could see how daughter could do it and no problems.  So I did too, with dairy.  Problems!  And denial on my part until a new test confirmed it.  So now I live in fear of some foods.  I prefer to make the foods at home because cc lurks everywhere.

[GottaSki]

Here is an idea for safe travel food -- my family calls it my "astronaut" packs -- really it is the new, well new to me since I saw my grandkids having them for treat -- squeezable baby food...I like the Happy Tot Organic ones -- I can't eat them all because of my many intolerances...but in my backpack are always a few - pears or the sweet potato/carrot/apple/cinnamon.  You can buy them on Amazon using their "Subscribe and Save" feature for a good price.  If you can eat Mango --- my husband says that one tastes good -- i ordered it by mistake as I can't eat mango...so he has been throwing them in his riding jersey as a sweet treat.

[foam]

I will tell it to you straight from someone that was a immovable hardcore vegan for many years, I did a decade vegan and another decade after that almost vegan (with some cheese). 

 

You can continue being vegan and that's fine but imho you will never gain back your health while doing so, not as a celiac. My skin had become so thin after 10 years vegan that it was almost plastic film over bone on my nose, I have no doubt my intestines were in much the same condition. At the time I felt fine, I performed quite well in sports and didn't seem to age as much as my friends etc etc.

 

But it seems my gut was just too thin and leaking and generally damaged from gluten at the same time. I got to a point where I needed to stop eating grains and nuts if I was ever going to go forward with my health and cure my immune system and unfortunately it meant I had no option left but to call in foods I hadn't eaten in years and that meant meat. Now being as extreme vegan as I was (I couldn't be in the same building as meat was being cooked and 2 or 3 times in the 20 years I wasn't eating meat I accidental got served some in food which disgusted me enough to instantly throw up, so I know exactly where you are coming from. But for me as sick as I was and with a son on the way, the time was right. When the time was right I had no problem eating meat. 

 

I'm sure your time will come when you get desperate enough I only for your sake hope you can do it before you develop some autoimmune disease. I still love the idea of veganism but my I've had to admit in the end that my genetic makeup is just not suited to it. My wife has no issues whatever with living long term vegan but we aren't all the same.

 

Now I'm eating a whole food type diet and trying to eat the meat as raw as I can deal with (lightly cooked or cured). When I was allergy tested the main issue was with yeasts and my immune condition (Kimura's disease) seems to be caused by a hypersensitivity to yeast which you can safely assume was caused by having a very permeable gut for a very long time. Very doubtful the same thing will happen to you since it's a one in several million chance anyone develops such a rare condition but you have the right formula going for it to happen.

 

Anyway have a good long think about it, but I would suggest you do at least think about it.