Am I Just A Wuss? (Staying Home After Gluten/soy/whateverings)

[Gemini]

I hold no grudges against anyone because everyone has bad days.  I guess because I have done this so long and have healed well, I get short tempered with those who come across as if this is the worst thing that will ever happen to you and you never get well.  The road to wellness with celiac is a long one, there is no denying that. We have incompetent doctors to boot and that's why I stress the importance of self education because, right now, that is the only way to wellness for us.  And I know no one likes to be told they need to tighten up their diet but that is what it really takes.  But, I know you will get there eventually and look back and be happy you did because you won't want to end up like someone I know.

 

This really makes my blood boil but nothing I can do.  I have a friend who I KNOW is full blown celiac.  She is only in her late 40's and she is literally falling apart.  She went in for a third surgery this morning to have her back "fixed" with steel rods and mesh because her spine is disintegrating from RA.  The destruction is progressing rapidly.  She can barely walk she is in such pain. She is bloated and gaining weight, whereas not that long ago she was a gym bunny who was incredibly fit.  She admitted to me she has never had normal BM's...always D or C.

Her sister also has RA and Hashi's.  Then, recently she broke out with what I thought was DH but it turns out she was tested for that (after I told her what to do for testing) and the derm she saw diagnosed plaque psoriasis. She is covered in it and it won't go away.  Yet....not one of the doctors thinks she has celiac.  She was tested via blood work but was on strong immuno-suppresants at the time so I told her the testing was useless.  Doctors don't know this? 

 

She tried a gluten-free diet for what she claims was one month, although she really wasn't totally gluten-free.  When I told her how strict she had to be, her eyeballs spun.  She fought the whole idea all the way because, as she put it, she can't live without bread.  I don't remember that bread is off limits for us...we just need to eat different brands of bread and I know all the good ones.

Then that damn derm doctor told her she DOES NOT have celiac, based on the diagnosis of psoriasis.  So he hasn't heard that psoriasis can be caused by food issues....apparently they don't know that, even though we do.  This just makes me crazy.  The AMA are just killing people. So....I have to bite my tongue nearly off when I see her because she has closed her mind to celiac because the doctor said so.  Oh, yeah...and she loves going out to eat.  So that has won out over getting better.  She goes out at least 3 times a week so she couldn't have been gluten-free for that month. 

 

Please don't let this happen to you!  Every time I see her I am reminded of the destruction that happens when you eat gluten or are not being careful enough. We can enjoy life and go out to eat....just not as often as the general public without celiac.  I want to see success stories, people!!!!! 

[GottaSki]

Here I am!!!!  Was headed to a wheelchair (probably should have used one last year- I was just too stubborn to accept it from the doctor). 

 

The three years that followed my celiac diagnosis were worse than those before diagnosis -- was I frustrated - hell yes -- beyond belief, but I kept trying -- now I am skiing again -- I walk everyday -- sometimes twice and I am able to run a half mile or so.  Still struggling to get back on my bike because my wrists and shoulders are proving more stubborn than my hips, knees, ankles and toes in getting moving.-- but I will be riding again very soon.

 

Do I have rough days - sure.

 

Am I in pain every morning when I rise - yep

 

Does it suck that my diet is so strict -- not any more.  While I was still very sick I was having regular pity parties with me, myself and I -- now that I am up and running - LIVING a very full life for the first time in over a decade -- I can honestly say I would eat anything to stay this way....lucky for me I have loads of delicious foods

[Gemini]

The Lisa's of the world seem to do very well on this diet, don't thery?     I feel better and am stronger now than I was in my 20's and that just boggles my mind. I wouldn't have believed I could feel this good after so many years of illness but it happened.  The hardest part is getting people to believe that wheat can do all this to people.  There has to be a better way to make them see the connection.

[nvsmom]

I love hearing you ladies' success stories... it's heartening. 

 

It really is all about choices, isn't it? We choose how "tight" we keep our diet, or not. We choose whether eating out (beyond a basic salad) is worth the risk, or not.  I truely appreciate that about this disease, because with my other autoimmune problems I had/have very little control over how I can treat it... And that drives me nuts when I have a plan for how to treat myself but a doctor decides he doesn't like my plan; I have to doctor shop or go along with his personal opinion of how I should be treated based on an interpretation of a lab test... Sooo frustrating. 

 

The control celiacs have over their own health is a great thing; it forces many of us to change our diets for the better. I would even venture to guess that it might result in some of us living longer and healthier lives... if we make the best healthy coices while following the gluten-free diet.

 

... but, that's just my personal opinion. It's a different experience for everyone I know, but at this point for me, the hassle the diet causes me is worth the improvements in my health.

[CaliSparrow]

It's great to know you are now skiing, Lisa. I'm only 4.5 months in and GET what you mean about it being harder at first after diagnosis. I'm in it. I CAN'TWAIT TO SKI!

Also, am with you Gemini on the AMA killing us. In Italy, every citizen is pre-screened and know within TWO WEEKS if they have Celiac! This ignorance here in the states is outrageous and I won't diverge into my own personal diatribe about being handed around the medical system for the past 8-10 years! My hematologist told me last year that he thought he was looking at a case of malpractice. Have you ever heard THAT come out of a doctor's mouth? Yet, he can't come out and say anything direct because they all have their little fiefdoms that the other mustn't tread on so it took A LOT of hints each appointment with him (touching my tender abdomen and telling me that's not normal; flipping through the GI doctor's reports acting nonplussed and asking me, "who is this Dr. __________ again?!?" He also told me that there was not one doctor (out of my slew of them) that had the WHOLE picture). This lead me to get back on the personal case of "Cali". What ARE all of these seemingly unrelated symptoms? Hmmmm????

Gluten-Free diet? Huh???

*WHAPO*!!! The rest is history along with my certain blood deficiencies shooting up rapidly since October. My skin looks VERY nice. I didn't even know I had nice skin!

I too, have a friend who cheats. She merely gets the itchy rash (that's her only symptom!). She went gluten free in 1998(!!!) but now is saying its a wheat allergy (goodness knows she wants to remain a non-conformist). Lately, she's been posting pictures of "glutenous" food on FB. I can't tell you how upset this makes me. She even teases me with it now, "look what I'M eating!". She believes that the severity of symptoms is positively correlated to whether or not it's a wheat allergy or Celiac (the greater the symptoms being Celiac). Her niece and nephew have excema and she wants them on a gluten-free diet but here she is cheating and telling me she doesn't want any "negative seeds planted in her mind". (In effect, "SHUT UP"!) Argh!!

Oh well, people have to make their own choices.

A question for you veterans: do you eat out? Dr. Fasano says we should eat out to educate the eating establishments so that this option becomes more and more viable for all of us. What do you think about this?

I ate out over the weekend and am paying the price. I may also be suffering from a little CC here and there. This is quite the process. I know it's the lucky autoimmune disease because we can control it and also, the fact my symptoms are horrendous makes me never want to cheat (everrrrrrrrr). I have had to continually repeat this "I'm lucky" mantra to myself today to get through it. Can't wait to move from rookie to veteran. How many steps does THAT take?

Cali

[IrishHeart]

Thank you, Irish. That's a good idea on keeping a symptoms list. Since you are the third person in a week who has spoken to me about expectations, I think I'll listen. I messed up last weekend because I went somewhere famished and am currently paying the price. I only wish I was in the place to have high expectations right now! The bargaining stage isn't bearing much fruit.

Maybe it was just a bad day. I see a lot of intelligent, supportive posts from Gemini. Have started taking an enzyme at mealtime but seriously wonder if anything is much help right now. I don't feel like a wuss today, just beaten. Tomorrow is a new day, eh?

Thanks for the support.

Cali

 

 

EVERY day is a healing day, Cali    That's my motto.

We're all living proof. 

 

I took digestive enzymes before meals and probiotics every day religiously the first year and I still take probiotics every morning.

I do eat out but I choose places declared safe by other celiacs on Find Me Gluten Free or Trip Advisor.

I waited to do this kind of splurging until 15 months in, however (again, this was just my experience based on a pretty ravaged gut)

Hang in there. 

[JNBunnie1]

It's great to know you are now skiing, Lisa. I'm only 4.5 months in and GET what you mean about it being harder at first after diagnosis. I'm in it. I CAN'TWAIT TO SKI!

Also, am with you Gemini on the AMA killing us. In Italy, every citizen is pre-screened and know within TWO WEEKS if they have Celiac! This ignorance here in the states is outrageous and I won't diverge into my own personal diatribe about being handed around the medical system for the past 8-10 years! My hematologist told me last year that he thought he was looking at a case of malpractice. Have you ever heard THAT come out of a doctor's mouth? Yet, he can't come out and say anything direct because they all have their little fiefdoms that the other mustn't tread on so it took A LOT of hints each appointment with him (touching my tender abdomen and telling me that's not normal; flipping through the GI doctor's reports acting nonplussed and asking me, "who is this Dr. __________ again?!?" He also told me that there was not one doctor (out of my slew of them) that had the WHOLE picture). This lead me to get back on the personal case of "Cali". What ARE all of these seemingly unrelated symptoms? Hmmmm????

Gluten-Free diet? Huh???

*WHAPO*!!! The rest is history along with my certain blood deficiencies shooting up rapidly since October. My skin looks VERY nice. I didn't even know I had nice skin!

I too, have a friend who cheats. She merely gets the itchy rash (that's her only symptom!). She went gluten free in 1998(!!!) but now is saying its a wheat allergy (goodness knows she wants to remain a non-conformist). Lately, she's been posting pictures of "glutenous" food on FB. I can't tell you how upset this makes me. She even teases me with it now, "look what I'M eating!". She believes that the severity of symptoms is positively correlated to whether or not it's a wheat allergy or Celiac (the greater the symptoms being Celiac). Her niece and nephew have excema and she wants them on a gluten-free diet but here she is cheating and telling me she doesn't want any "negative seeds planted in her mind". (In effect, "SHUT UP"!) Argh!!

Oh well, people have to make their own choices.

A question for you veterans: do you eat out? Dr. Fasano says we should eat out to educate the eating establishments so that this option becomes more and more viable for all of us. What do you think about this?

I ate out over the weekend and am paying the price. I may also be suffering from a little CC here and there. This is quite the process. I know it's the lucky autoimmune disease because we can control it and also, the fact my symptoms are horrendous makes me never want to cheat (everrrrrrrrr). I have had to continually repeat this "I'm lucky" mantra to myself today to get through it. Can't wait to move from rookie to veteran. How many steps does THAT take?

Cali

To answer the 'veteran' question, it sort of just happens one day. It could be four months into the diet, it could be four years, just one day you'll realize you're doing everything right, without second guessing yourself at all. And however long it takes you is totally ok! It's ok to be a rookie!

 

As to eating out, it definitely can be trial and error. I am blessed in that I have no less than three dinner and one breakfast establishment within 40 minutes of me that GET IT. I mean, separate dishes for gluten free food, the whole nine yards. I have not been hit once at any of them. Yes, it's a risk every time, and I accept that.

 

I have a system for where I'm willing to eat. 1. Do they have a website? If so, it must have a gluten free menu on it. No restaurants that only have them in-house. 2. What look does the host/hostess give me when I say gluten free? If I get that deer in the headlights thing, I just get water. 3. What is it that's ON that gluten free menu? Is it just steak, baked potatoes, and green beans? Well, I can do that at home and I usually don't bother! If there's anything fried I always ask the question about the fryer and how they keep food straight in the kitchen. My favorite place always has the cook or shift manager bring out the food for the gluten free person, so the waitstaff can't get anything mixed up.

 

Places like Outback are usually pretty good, but in those circumstances you still need to be vigilant at each location you go to. Just because they have a gluten free menu doesn't mean they get it, is something I had to remind myself of over and over and over....

[CaliSparrow]

Thank you

[GottaSki]

Hi Cali!

 

I go to restaurants regularly now (only been vertical for about 5 months) with my husband, family and friends.  For now I bring my own because my no-no list is too long -- my hubby and sons are the only ones that can cook for me safely -- FOR NOW.  I plan to dine out at well screened gluten-free restaurants within the coming year.

 

With regard to training restaurants -- I find that we are all ambassadors by necessity.  I have given the "celiac vs gluten free ingredient" speech so many times over the years it rolls off the tongue...I find many wait staff ask me lots of questions -- even more so now that I simply order a glass of wine or a cup of coffee at the start of the meal and ask for their nicest plate when everyone is ordering the main meal.  It is great that we help educate folks -- just not so it impedes on your health or enjoyment of dining with family, friends and co-workers.

 

Edited to add:  -- I ask for a nice dish and then I place my small oval casserole type dish on top of it.  I do generally use their utensils -- as long as I feel safe, but do always carry my own set too.  Please keep in mind -- my case is a bit more extreme -- I know many celiacs that dine out safely as long as they are careful and do their research.

[notme]

i like to think about eating out more than i actually am brave enough to try.  ie:  we are going to florida - i am looking up gluten-free in ft myers beach, naples, and port st lucie.  and making a list of what to put in the cooler because i'm just not going to risk it.  it takes 2 weeks and if i gotta eat a ham samwich every day, i will.....  (o boo hoo, listen at me, haha this gets easier every time i go away.  i started out hauling around half the kitchen lolz)  i am lucky because it's just celiac and i avoid soy - also take it easy on certain things - but because it's 'just celiac' means just a little bit of oopsie will put me in a world of hurt FOR TWO WEEKS no getting around it.

 

ya know, it's really practice, tweaking, experimenting  i throw a bunch of stuff into the backpack now and as long as i can get (aluminum foil, paper plates <and i choose from the middle of the package in mixed company lolz, i bring my own drink(s) i even bring my own canned whipped cream to put on my dessert.  i eat before we go out and bring a snack.  or i will bring something just to chew on, like a salad, etc, and just drink wine if i am going out with other people.  

 

it's probably harder to convince other people that i am happy with my ham samwich!!!!!!!

[Pegleg84]

Jumping back in...

 

4-years gluten-free as of this week! Onward and upward, even if there are bumps in the road.

 

Gemini, I definitely know your frustration. My sister also doesn't stick to her diet nearly as well as she should (which worries me, but it's her health), and even my mother who deems herself a bit of an expert probably gets glutened more often than she realises. I just had one stupid day! and it probably wasn't even gluten that got me (f-ing soy, I say!). In any case, it was a reminder that I have to be super uber careful these days

 

Which is why I am currently munching on a post-work snack before going out, rather than worry about finding food. My man and I went out for a lovely dinner last saturday for our anniversary. I interrogated the chef when making reservations. They were very accomodating, everything was safe, and delicious, and I didn't get hit! yay! But even in a city like Toronto, it can be difficult, so best to go out prepared.

 

So, we all have wussy days, then things heal up and the sun comes out and all is better.

 

Now I'm off to find me some gluten-free beer.

Cheers!

[Gemini]

If all else fails, get some beer or wine!  If nothing else, it just makes a person happy to have a little glass of something good.  I am not a beer drinker but my husband absolutely loves Green's beer.  It's Belgian and pretty strong so you don't have to drink as much. 

[GottaSki]

Hey Peg -- you and I share a silly birthday - my 4th is next week - Happy "Birthday" to you!

[CaliSparrow]

Congratulations, Peg! Eaing beforehand is something I'm going to adopt.

[Findin my way]

Jumping back in...

 

4-years gluten-free as of this week! Onward and upward, even if there are bumps in the road.

 

Gemini, I definitely know your frustration. My sister also doesn't stick to her diet nearly as well as she should (which worries me, but it's her health), and even my mother who deems herself a bit of an expert probably gets glutened more often than she realises. I just had one stupid day! and it probably wasn't even gluten that got me (f-ing soy, I say!). In any case, it was a reminder that I have to be super uber careful these days

 

Which is why I am currently munching on a post-work snack before going out, rather than worry about finding food. My man and I went out for a lovely dinner last saturday for our anniversary. I interrogated the chef when making reservations. They were very accomodating, everything was safe, and delicious, and I didn't get hit! yay! But even in a city like Toronto, it can be difficult, so best to go out prepared.

 

So, we all have wussy days, then things heal up and the sun comes out and all is better.

 

Now I'm off to find me some gluten-free beer.

Cheers!

 

Hi Pegleg84.  You and I are not so far neighbours.  I'm in Kitchener.

 

I went out to eat for the first time since I first learned about Celiac, which would be about 10 months.  I haven't been officially diagnosed  yet and need to tell my gastro doc that I'm Celiac next week.  Should be interesting.  (He didn't do a full Celiac panel and I only had mild villous atrophy so he didn't want to say Celiac.  He wanted me to go gluten free for 3 months and see how I was.  When I said I wasn't where I wanted to be after three months he said to make it another 6 months.  So that's my appointment next week.)

 

Anyway I went to a restaurant in Chinatown called Hibiscus.  They are completely gluten free and vegetarian.  I'm not veg, but my daughter has decided to go veg.  They were able to accomodate all my problems, gluten/dairy/soy and corn.  It was great.  I felt like a human again.  It was nice to be out socializing, living my life.  Ok, it was with a bunch of 16 year olds, but it was still nice.  We had a great day in Chinatown and then the ROM for the dinosaur exhibit.

 

The next day I was back in Toronto.  My husband and I were in the north part of town so we stopped by Goodbye Gluten.  I had a nice lunch and got some good cabbage rolls for dinner.  Also had some amazing biscotti.  Then we went to the Canada Blooms show and had a great day. 

 

It was just nice to know that I have these options.  Having so many intolerances, I've been afraid to go out anywhere.  Parking in downtown TO is a nightmare and carrying food for an entire day gets heavy.  So knowing that with a little research and faith there is a way to live life again, is nice.

 

As for the "wuss" of missing work, don't worry about it.  I had to quit my job because I couldn't walk anymore.  Didn't know that was all related to Celiac though.  It took another 2 years to find that out.

[GottaSki]

Oh my goodness..."mild villous atrophy" ?????????????

 

So sorry, forgot my manners when I read the above quote.

 

Welcome Finding My Way....you have come to the right place.

 

Ask questions...snoop around posts by searching similar symptoms - read the "newbie 101" if you haven't had the opportunity...for goodness sake -- please, stick around.

[IrishHeart]

HI FINDING MY WAY

 

What the ....&^%$! 

If I hear one more person say their doc said "it was only mild atrophy" or "you have mild celiac", I think my head will explode.

 

Ask the doc if you can be "mildly pregnant". 

 

Hon, you're one of us.

 

Welcome to the forum and please know we are here for you!

[Pegleg84]

Yes, welcome to the forum!

And what GottaSki and IrishHeart said, there's no such thing as "mild" celiac disease. You've either got it or you don't and you've got it.

 

Hibiscus was also one of the first places I went to when I moved here. I haven't been in a while, but so good! They have wonderful gluten-free/vegan treats too. I haven't made the trek to Goodbye Gluten yet (mostly cause I'm afraid I will leave it with a drained bank account)

 

I don't know how things are in Kitchener, but look up Ontario Gluten-Free (or something like that) and there's a database of gluten-free restaurants and such.

 

Good luck!

Peg

[Findin my way]

Thanks for the welcome everyone!  I'm not sure why my gastro doc is so relunctant to say Celiac.  I'm suppose to tell HIM if I have it on our next appointment. 

 

Pegleg, Kitchener's not too bad for the gluten free stuff.  There are three places I go to that specialize in gluten free stuff, so I'm able to get treats when I need them. 

[GottaSki]

Here is something you can tell him...

 

"Thanks Doc...I have Celiac Disease and you are fired"

 

or "I have determined I have Celiac Disease and you need to read current research regarding my condition so you will know as much as I do".

 

Joking aside -- a good primary can take care of your follow up unless you need subsequent endoscopic biopsy....if that happens find the best Celiac specialist in your area.

 

Keep hanging out and ask questions - it really does make the transition much easier.