Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Celiac Disease, Vegan, And Allergic/sensitive To Everything Else - Help
0

8 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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!  

1

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,367
    • Total Posts
      917,515
  • Topics

  • Posts

    • Gluten And Vertigo
      Christiana, I just felt to look at the site. I thought I had clicked to get email alerts. But, actually my email has been 'fritzing' sort of.  Thank you for your note. It is important for my diagnosis. I was diagnosed with chondritis of the collar bone a few months before the fall that resulted in the immobile right arm. The osteo surgeon gave me a cortosol shot that helped a lot. That MRI showed a rotator cuff tear nearly 2/3 thru the strip of tissue that connects the muscle tissue to the bone and makes the shoulder 'rotate' in place.  That was almost a year ago now. I have been learning to be very very mindful about how I use that arm, when I reach, carefully, how I rest it and sleep position. Interesting that I did see a search answer that said ' they are saying now that there could be a connection btn rotator cuff tear and inflammed collar bone. My primary doctor also said I could have an inflammed chest wall that resulted in the chondritis. I remembered that word from a child's diagnosis years ago. That was in his knees and was treated by this same osteo surgeon, by casting the legs over summer holiday, which ended in healed x-rays. That was osteo chondritis desicans. He said then, 'if it is horses, we would have to shoot them.'  I tried to get a blood test three weeks ago for the same antibody we were treating that child with thru his then pediatritian, for rheumatoid antibodies/ recurring strep throat. I had gotten a 'sort of' diagnosis, or agreement from that primary care doctor, allowing me to get the recommended antibiotics (one of the few treatments that it is allowed, because of the need to keep the hearing). But, his new nurse did not relay the request properly. I hate doctor office politics. I hope this newbie is not going to mess with this doctor's little family as well. Last month when researching Meniere's one of the things listed about it was that autoimmune disease is connected to it also. I was hurt before the falls and the inflammation and the collar bone chondritis and the rotator cuff tear. I was very very concerned about it setting off some kind of autoimmune inflammation reaction or worse that can happen when tissue cells are being repaired rapidly and it felt like lots of toxins were being cleansed and processed over a period of many months. The only similar feeling I have ever experienced was when I had a 'deep tissue massage' to release and cleanse a cortisol 'hump' I had after a prolonged period of high family stress situation. Right now, my primary (an O.D. , or osteopath) is working with me. There are two ENTs in this area he offered for Meniere's and has given me Physical Therapy at his complex for Balance Therapy. It is great that that therapist has a MIL that is also dealing with Meniere's and getting exercises from a major hospital complex in the city. I was able to give her some celiac's diagnosis information. Sounded like her MIL and her son were likely to be candidates.  I did not know what the definition was of the term 'vestibular' as in vestibular migraine, another connection to Meniere's. I just typed www.bing.com and then typed 'definition of vestibular.' That had information about the connections btn hearing and sitting positions. I will look up costochondritis. Thank you, again. Best wishes, Anne
    • What Are Your Brands & Flavors Of Gluten Free Ice Cream ?
      I don't worry about the same facility, but I check if it is on the same lines. I think it is usually a good idea to find out if things are made on shared lines. And if they are made on the same line as gluten-containing products how good is the cleaning in between? Chocolate is a good example of this. For example, I contacted a company whose chocolate I used to eat before being diagnosed and they outright told me they are not good about cleaning on shared lines and it is not safe for allergies or celiac. I have had this response from other companies as well (especially when it comes to chocolate sadly). I think this is why Godiva is not safe. Its just a good idea to check.
    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
      Wow you all have more balls than I do. I've been gluten free since 2007 and I'm still afraid of offending people. It gives me lots of troubles, really. I'm more like rockstarkate I guess...the "people pleasing" aspect.  I love how you all just have the flat out rule I Will Not Eat It Unless I or a Celiac Made it. (Or a trusted family member).  I still simper and grovel and cringe and apologetically turn things away.  People still put dishes in my face and say "This should be gluten free..."  and I have to awkwardly not eat it and then seem rude.  I've done the whole...checking the bottles thing too.  I do try to dart out of things more though now. I volunteered in other countries in recent years and I felt as vulnerable as all heck, having to rely on them to make food, as well as definitely feeling like I offended people who didn't get it at all. I was feeling brave when I signed up for those but after the second time I was like okay, the fear/anxiety/stress about the food is too much. I managed to dodge out of getting sick, and for the most part people humored me...but it was pretty difficult because I don't like offending people, especially other cultures, with them trying to be nice and make food for me...pretty sure I did offend people as well as annoy many others.  Anyway...no OP, you are not alone. For sure I have trust issues eating other people's food. They say they know but I do truly doubt they are as strict as I would be.   A few times I will still brave eating something...like some little mozzarella balls with vinegar...though, I did still look at the labels.  Someone had to give me a persuasive speech and show me all ingredients (just salt and pepper) after making me chicken wings once. I do tell people, basically, NOT to make me stuff. But they still do.  Another time a friend had worked really hard and was having a terrible time and offered me a burger patty when I arrived, assuring me it was gluten free. I knew I hadn't been there to watch whether she used the "bun spatula" on it or not...but I just didn't feel like giving her a fight about it since she was having a rough time and hosts like to feel they are feeding guests, blah blah. So I ate it. And got glutened. And wailed and gnashed my teeth haha. Lesson learned.  I need to stick to my guns more. I just always feel like I'm being too "difficult" as it is. But...sigh.  It is refreshing for me to read these empowered no BS responses though. You all remind me of where I'm coming from, and not that I'm just being some kind of high maintenance, rude, crazy person. You'd think after, what, nine years now, I wouldn't still be bothered by it...
    • Mashed potato soup during healing
      I was on pretty much a liquid diet for 8 months waiting for my nausea to go away completely. I mostly had mashed potato soup, 1/2 fat ice cream (mostly whey, not milk), chocolate drink (no added milk) and gummy vitamins. The soup tasted yummy and I'm still alive so I figured I'd share it for people not feeling well in the beginning. I've been noticing people with alot of trouble keeping food down in recent posts. I couldn't have milk or eggs, but the cheese in the recipe didn't bother me at all. Notice the lack of spices. Makes it easy on the stomach.   Mashed potato soup: Boiled yukon gold potatoes (5lb bag) 1 package cauliflower, steamed 4-6 slices of Land O'Lakes white American cheese 4 tablespoons butter salt 16 cups homemade chicken broth, salted   Chop steamed cauliflower into teensy bits (pureed is better). Put in mixer with butter, cheese and a potato or two. Blend while slowly adding potatoes. Keep whipping for a few minutes to insure the cauliflower and potatoes are not lumpy at all. Salt to taste.   Combine 1/2 cup mashed potatoes to 1 cup salted chicken broth. Mix with spoon until mashed potatoes have completely dissolved. Enjoy. Individual servings can be frozen.   Homemade chicken broth: makes 8 - 10 cups of broth   1 organic chicken (regular chickens are too big) 1 stalk celery 1 carrot 1 large bay leaf 1/2 package fresh thyme from the  herb section of the vegetables area   Put all ingredients in pressure cooker along with 1.5 liters water. Bring to pressure. Cook for 35 minutes. Separate broth from solids. Separate broth from fat. Add ridiculous quantities of salt until it tastes like soup. Sorry I use a salt grinder so I don't have precise salt quantities.    
    • I have kidney stones...spent last night at the ER
      Hey ArtG, I saw the urologist today...unfortunately for me they can still see my stones on an xray.  Sigh.  The largest is 3x6 in my right kidney.  He does not believe I can pass this one on my own.   All of my bloodwork came back fine.  Nothing alarming in the urinalysis either. His recommendations...keep drinking tons of water.  I had 4.2 liters of urine output when I tested.  Add in a fish oil supplement.  Decrease sodium intake.  Limit meat to 10 ounces per day.  Increase dietary calcium.   Work at lowering oxalate consumption...my urinary oxalate was 45.  They want it between 20 and 40.  But he gets people that are over 100 so mine is not all that high. 3 options...1. watch and wait.  Recheck in a few months to see if there is stone growth.  2. Shock wave lithotripsy.  3. Let it come out when it decides to and see what happens. I just don't know.  I hate the idea of being put under as they would do for the shock wave thing.  I've had too many surgeries already.  It scares me to be honest.  I also don't want to deal with another episode.   I don't know what I'll do.  We've got a vacation planned at the end of the month and I just want to go and enjoy that.  Not worry about kidney stones. I'm sorry to hear about your upcoming surgery...it really is always something!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,513
    • Most Online
      1,763

    Newest Member
    ajrosales
    Joined