Struggling

[K-Dawg]

Hey

I was diagnosed a couple months ago. I have been having a very hard time getting a handle on what I can eat. Have other people found it difficult to get a hang of it. I mean, I just feel so overwhelmed and completely depressed about this. I feel silly even saying I'm depressed about it because, I mean, all I have to do is change my diet. There are so many people that would like to be able to 'cure' themselves by chaning what they eat and here I am having a hard time with it.

I'm a vegetarian, but have introduced fish to my diet. I was eating a lot of rice bread/pasta and just found out that I"m allergic to rice, peanuts, tomatoes, citrus and everything in the pepper family. When I take out rice, I'm just not sure what to eat (if I stay vegetarian). I"m also lactose intollerant.

Feeling very discouraged...it's like a full time job just trying to figure this out. I will feel pretty good for a few days and then feel ROUGH again for the next few. I must be messing up or maybe it was the rice allergy.

I feel very isolated with this.

[The Fluffy Assassin]

Hey

I was diagnosed a couple months ago. I have been having a very hard time getting a handle on what I can eat. Have other people found it difficult to get a hang of it. I mean, I just feel so overwhelmed and completely depressed about this. I feel silly even saying I'm depressed about it because, I mean, all I have to do is change my diet. There are so many people that would like to be able to 'cure' themselves by chaning what they eat and here I am having a hard time with it.

I'm a vegetarian, but have introduced fish to my diet. I was eating a lot of rice bread/pasta and just found out that I"m allergic to rice, peanuts, tomatoes, citrus and everything in the pepper family. When I take out rice, I'm just not sure what to eat (if I stay vegetarian). I"m also lactose intollerant.

Feeling very discouraged...it's like a full time job just trying to figure this out. I will feel pretty good for a few days and then feel ROUGH again for the next few. I must be messing up or maybe it was the rice allergy.

I feel very isolated with this.

I agree that you have it tougher than most of us, but you still have to focus on what you can still eat. Even staying vegetarian, you have potatoes, the Three Sisters (corn/maize, beans, squash), tofu and other soy products (including gluten-free tamari to make it all taste better), fresh fruit other than citrus, and a wide range of grains such as quinoa, millet, teff, amaranth, etc., etc., etc. It isn't quite a full-time job but it is a pain in the ass. Trust me though that it gets better very quickly. You would be well advised to do practically all your own cooking; the main thing is to come up with things you like that you can still eat. Soft corn tortilla wraps are a good substitute for sandwiches, assuming you can find soft corn tortillas in Canada. Also, remember that so long as you don't have milk allergy or casein intolerance, Lactaid completely takes care of all symptoms of lactose intolerance, so that's one thing you shouldn't have to worry about. In the long run (a year or so gluten free), your lactose intolerance may go away. (Mine did.)

Good luck. You'll feel less isolated if you join a support group (e.g., Open Original Shared Link or post here when you're feeling discouraged. If you must eat in restaurants, some people get good results with food allergy cards; this site claims to let you print one for free: Open Original Shared Link

Hope some or any of this was helpful. Try to keep your chin up, and welcome!

[OptimisticMom42]

The depression may be part of gluten withdrawal. It gets better. Just keep at it.

Take care

[PattyBoots]

I guess in some ways I can add the other side of the spectrum - I've always been a scratch cook, and as I told my endo one time, my idea of convenience food is frozen vegetables. I think I've eaten Hamburger Helper MAYBE five times in my life. So I guess this disease is particularly depressing to me because I've not eaten much of what should be a trigger.

BUT, it also makes it easier! I made a fabulous sweet-and-sour meatballs over rice tonight - used some shredded parm and Rice Chex as binder It's easy to use cornstarch instead of flour as thickening - think chicken fried steak with gravy - mmmmmmm. Think creamed peas - mmmmmmm.

This has actually been very easy for me/us - except on the rare occasions when I'd reach for pasta instead of potatoes, and then I need to stop and say, "ugh, rice".

It's WAAAY doable, once you decide to cook, instead of opening up a box. Now, if I had to give up corn and rice, well, I dunno - but I guess I'd figure it out.

I also had a heads-up, in that my mother suffered from gastro issues her whole life, up to, and including having her entire rectum and colon removed in the mid-60's, so once I started getting symptoms, I wanted answers. So hopefully I won't go through the entire spectrum of intolerances - 'cause if I now have to give up my Redbridge, there'll be hell to pay LOL.

[darkhorse]

I also had a heads-up, in that my mother suffered from gastro issues her whole life, up to, and including having her entire rectum and colon removed in the mid-60's, so once I started getting symptoms, I wanted answers. So hopefully I won't go through the entire spectrum of intolerances - 'cause if I now have to give up my Redbridge, there'll be hell to pay LOL.

This is my family, too. My entire mother's side of the family including my mom and grandmother have moderate to severe stomach issues with numerous surgeries. So when I started having problems I also jumped the gun to hopefully avoid many of the things they all went through. Unfortunately, I seem to have caught it a bit too late as other food intolerances are starting to appear.

In terms of food, my husband and I have found that making things from scratch is really not that hard, especially if you plan ahead and the food tends to taste much better. It also takes almost all of the trial and error out of processed foods and trying to figure out if there are CC issues as well.

Definitely look into other grains and ways to prepare food to give yourself more options. I would suggest avoiding the soy products as much as possible because they are actually not very healthy for you at all but moderation is fine.

[tarnalberry]

No matter the loss, even if it's "just" your way of eating, it's a loss. You have to grieve it in some fashion, and depression is a fairly normal part of grieving. Your feelings are your feelings, and there's nothing wrong with having feelings, it's just what you do with them. So, re-read fluffy's advice (pretty much what I would have said), and start learning about this wider world of food than you experienced before - it's an adventure of it's own.

[ceyannuzzi]

well you are definitely not alone. i just got diagnosed last week & i'm struggling as well.

I'm sure i'll get sick of salad & other foods that I know are gluten-free soon.

Grocery shopping was very depressing.

You are right, all we have to do is change our diet, but it's FOREVER and that's very intimidating.

Bummer about no rice & peanuts...that would make it that much harder.

You are not alone. Hang in there.

I feel your pain

Carrie

Hey

I was diagnosed a couple months ago. I have been having a very hard time getting a handle on what I can eat. Have other people found it difficult to get a hang of it. I mean, I just feel so overwhelmed and completely depressed about this. I feel silly even saying I'm depressed about it because, I mean, all I have to do is change my diet. There are so many people that would like to be able to 'cure' themselves by chaning what they eat and here I am having a hard time with it.

I'm a vegetarian, but have introduced fish to my diet. I was eating a lot of rice bread/pasta and just found out that I"m allergic to rice, peanuts, tomatoes, citrus and everything in the pepper family. When I take out rice, I'm just not sure what to eat (if I stay vegetarian). I"m also lactose intollerant.

Feeling very discouraged...it's like a full time job just trying to figure this out. I will feel pretty good for a few days and then feel ROUGH again for the next few. I must be messing up or maybe it was the rice allergy.

I feel very isolated with this.

[ang1e0251]

Someone once wrote this good advice. She said she wrote down seven meals that her family frequently ate. Then she determined how to make them gluten-free. She was surprised because some of them were already gluten-free or close to it. Once she mastered making those gluten-free, and cooked them several times, then she added other dishes and so on.

Your situation is a little trickier because of your other allergies but still doable. There are a lot of resources on the net for foods and recipes. I like recipezaar. You can type in your food prerences and it will search for recipes that meet your requirements. I would limit your foods at first as you get the hang of shopping and preparing your foods. After you master the simple whole foods, then add new foods one at a time to see how you react to them. You'll be better able to gage your reactions that way and it gives you time to mentally adjust.

And, by the way, it is OK to be sad about changing your life so unexpectantly. It is Ok to vent about it here or with someone you trust. Just don't let it take you over. If venting isn't enough, some counseling might be what you need. In the meantime, keep talking to us. You can say anything here and someone will be able to relate.

[LDJofDenver]

I just want to share a couple resources that really made my life easier. I was diagnosed just last August, so not even a year yet. I know how frustrating it can be, especially at first. It will get easier, and before you know it, you'll be an old hand at it.

There are gluten free grocery shopping guides available, that list mainstream products and brands found in your local stores. The one I bought was about $25, and worth every dollar.

Gluten-Free Grocery Shopping Guides:

Open Original Shared Link (this is the one I bought - it will put an end to standing in each grocery aisle reading lables!)

Open Original Shared Link

Open Original Shared Link

There are restaurant/fast food guides as well.

Hope this helps. Hang in there.

[tunibell]

May I ask how it was determined that you are allergic to rice? Was it via bloodtest? IgE or IgG?

[K-Dawg]

May I ask how it was determined that you are allergic to rice? Was it via bloodtest? IgE or IgG?

Hi All:

Thanks for all the words of advise and encouragment, everyone. I really needed them. I recently found some corn pasta so that made me happy. And via an internet search, I found a place downtown that sells potato pasta. I have always eaten very well -- and for years I have been cooking my own meals due to other pre-existing food allergies -- but I find that I'm not getting as much diversity or flavour. Oh well. I think a support group is probably a good idea for me.

Allergies: To the best of my knowledge, the allergy specialist my dr referred me to relied upon her scratch tests (not sure of the technical word). I do not believe there was any confirmation via a blood panel. Should I request this?

I seem to recall getting Ige and IgG tests done a couple months ago. My liver specialist requisitioned them shortly before I had my endoscopy (from which a diagnosis of celiac disease was made). IN truth, the last few months have been a blur of work (I"ve been working more hours than I thought humanly possible), pain, blood/ultrasound/genetic testing, etc so it's hard to keep track of all the meanings of all the blood tests I"ve had done.

K-Dawg

Ceyannuzzi, hang in there! We'll make it

[K-Dawg]

PS. I did not immediately stop eating rice...when I did stop I noticed that the hive-like skin rash I"ve been getting almost daily ceased and I"m not getting headaches.

[Ariauna]

Just take it slowly and take your favorite items to eat and find a way to make them allergy free for you. In the beginning I was overwhelmed and did not know how I was going to do it! After a few weeks I took a step back and began checking for my fave recipes gluten-free online I was surprised to find that many people have found ways to take the food allergies out of some of the most common items. I hope you are able to keep some of your fave foods and get through this. You will feel so much better that you will eventually not feel as if you are "missing" out on things.

Encouraging prayers for you

[ang1e0251]

Hey, no wonder you're stressed if your working extended hours as well as coping with testing and diet! You ARE a super woman!!

I'm glad to see you are coping a little better. About the tests, it's a good idea to always ask for personal copies of any test results you have. Keep those in a file. Even if you don't know how to read the results, you can always get a second opinion if you have a copy. And you can post results in places like this where there are people who can interpret them.

[K-Dawg]

Hey, no wonder you're stressed if your working extended hours as well as coping with testing and diet! You ARE a super woman!!

I'm glad to see you are coping a little better. About the tests, it's a good idea to always ask for personal copies of any test results you have. Keep those in a file. Even if you don't know how to read the results, you can always get a second opinion if you have a copy. And you can post results in places like this where there are people who can interpret them.

Hey, yes. I agree with you about keeping copies of medical records. I have records of all tests for the period of November 08 - March 2009 (blood work, x-rays, ultra sounds, etc). After March. ,however, I just got too busy (and was too tired) to keep up on it...and let things slide. Now I"m a bit at a loss and the last few months have been a blur and I"m not even sure as to the next steps for me (besides the next round of bloodwork I'm to go for this week)

I"m not sure how it is that folks on this forum are able to so easily adapt their recipes...maybe it's the food allergies that is making this really hard for me. I actually do feel like it is a full time job. I mean, countless times a day I am unsure if this or that ingredient is okay. I am still not sure of what restaurants I can eat at. I"ve had restaurants just tell me that they won't accomodate me. Last week I was yelled at by a frustrated manager (after telling him, "no I can't have tomatoes"). He asked, "why do you even bother coming here?"

I have modified a few of my recipes but doing that took my 4 hours one day (which just meant I worked until 1am that night at my paid job) so ...... i don't know. I was feeling a bit better, but now I"m just back to being overwhelmed (I got gluttened at a restaurant tonight and feel so awful right now). They screwed up, brought out rolls and rice on my plate. I reiterated my whole "I have celiac" speech and said they needed a NEW plate with NEW FOOD..I suspect they used the same plate/food and it was a cross-contamination issue. Who knows.

[ang1e0251]

On another post, someone gave this suggestion for a restaurant mistake. She said to tell the server you will keep the problem plate with you while they bring you a properly prepared plate. At that time you will exchange them. That way they cannot use the old plate on you or pick off the offending food.

If this is overwhelming and new to you, you may want to avoid restaurants for awhile. I will tell you what I tell all newbies. You are a little more advanced than that but with all your other stresses, I think this could be a beneficial way for you to eat. You've recently discovered some new allergies so you're kind of starting from scratch. I would say go back to basics. Make a list of the whole foods you can eat like meats, potaotoes, veggies and fruits. Any nuts that are allowable. Just the ones you can eat, we will not dwell on the negative. Now instead of researching endlessly while you are so tired from everything else, just eat these basic foods for a month or so while you get the hang of the new way to eat. Go through your spice rack and throw out any offenders you know for sure you cannot have. Also throw out anything you might have double dipped a spoon into. If there are some spices you would like to save but are unsure of, box those up for a time when your life is calmer. At that time you can take the time to research it if you choose. For now, cook simply, eat simply. Get to feeling well again and later you can add new recipes. Now you are just too busy. Give yourself a break!

There are plenty of people who use this forum with multiple allergies. Keep asking questions. Ask for recipes and guidance. You'll get it here. Just don't expect so much of yourself when your life is kind of crazy. Make your food calm and simple and you will feel more peaceful.

[Kitface]

The depression may be part of gluten withdrawal. It gets better. Just keep at it.

Take care

oh great. i have more depression to add to my depression.

Is this a common thing? i wonder, is it related? i think i've had celiac for a fair few years and the depression seems to have got bad around that time.

i've had blood tests anti bodies were sky high. but thats apparantly not diagnostic. i need to have the camera shoved up me arse first >_<

*sigh* trying to work full time for first time in my life with all this is a bit crazy-overwhelming.

I also didn't know mouth ulcers were related. i got slammed with a few virus's this last month was off work for a fortnight screwed up my pay. but had over 11 in my mouth 5 of which were on my tongue. 3 right in one place turned into an uber-ulcer not fun.

so when i eventually got my appetite back i couldnt eat ANYTHING cos it hurt so bad.

sorry this quick question turned into a full scale rant! should probably get back to work.

[K-Dawg]

oh great. i have more depression to add to my depression.

Is this a common thing? i wonder, is it related? i think i've had celiac for a fair few years and the depression seems to have got bad around that time.

i've had blood tests anti bodies were sky high. but thats apparantly not diagnostic. i need to have the camera shoved up me arse first >_<

*sigh* trying to work full time for first time in my life with all this is a bit crazy-overwhelming.

I also didn't know mouth ulcers were related. i got slammed with a few virus's this last month was off work for a fortnight screwed up my pay. but had over 11 in my mouth 5 of which were on my tongue. 3 right in one place turned into an uber-ulcer not fun.

so when i eventually got my appetite back i couldnt eat ANYTHING cos it hurt so bad.

sorry this quick question turned into a full scale rant! should probably get back to work.

Oh, you're email is perfect and exactly how I feel. FYI -- I just had to have the camera shoved down me throat and not the arse so maybe you'll be lucky that way too (although the arse camera is coming, I'm sure - lol)

It's a lot to deal with......ugh. Apparently it gets better..... I do feel better and have gained 25 pounds (a good thing as I had lost 30 pounds in a few months)...but I've been at this since April and my diet just keeps getting more restricted. It's frustrating. I TOTALLY HEAR YOU

And there is a crazy amount of misinformation. For example, so many people have told me COrona beer is gluten free. WTF? IT is made from barley. HELLO? ANd when I email manufacturer's I"m waiting weeks for a response and the response if VAGUE at best...when I call the folks I speak to are inept. And being a vegetarian does not help matters.

But I do feel better than I did 3 months ago...if only I could get my liver feeling better!!!

K-DAWG

[Kitface]

Oh, you're email is perfect and exactly how I feel. FYI -- I just had to have the camera shoved down me throat and not the arse so maybe you'll be lucky that way too (although the arse camera is coming, I'm sure - lol)

......

It's a lot to deal with......ugh. Apparently it gets better..... I do feel better

And there is a crazy amount of misinformation. For example, so many people have told me COrona beer is gluten free. WTF? IT is made from barley. HELLO? ANd when I email manufacturer's I"m waiting weeks for a response and the response if VAGUE at best...when I call the folks I speak to are inept. And being a vegetarian does not help matters.

But I do feel better than I did 3 months ago...

hehe Thanks! yeah. i have depression and anxiety issues. so i'm at best tired and lethargic. i was under alot of stress with adds to my lethargy, and then i got told celiac can add to tiredness and lethargy. then i got 3 different virus's.

i was darned. and i was homeless for a week and had to move twice during all this.

so yeah. to quote a famous and gifted lyricist "the only way is up"

hehe

I heard that they knock you out on valium and dont remember a thing. so that's fine. I'm 24 and i'm like crying on the phone to me mammy saying please come with me. and she had to baby me over the phone. PATHETIC but its a shock and scary.

so yeah. deep breaths. take it one day at a time.