Celiac and Neuropathy

[GFreeMO 113]

The hardest part about celiac for me is...Mysterious glutenings when you have absolutely NO idea what zapped you this time even though you are freakishly careful.

[bartfull 569]

For me the hardest part is all of the new intolerances that keep cropping up. Just when I think I'm doing OK, something I've been eating all along starts to give me trouble. Oh how I wish there were a way to survive without ever eating again!

[dilettantesteph 492]

The hardest part about celiac for me is...Mysterious glutenings when you have absolutely NO idea what zapped you this time even though you are freakishly careful.

Me too, and getting sicker and sicker while doing elimination diets until I finally guess right.

[Sumomo 0]

I am right there with you, I have super careful and still occasionally get glutened and the effects last for days. Sometimes it's not always the food you eat but what it may have been prepared around (baking pans, food processors, etc.). I have had plenty of meals made for me by well meaning friends and family, but there are a million CC risks with every attempt. Sometimes I can walk away just fine, others I don't get off so easy!

[Bubba's Mom 103]

For me, it's the inconvience..AND the secondary sensitivities that are popping up!

I was running errands today and got shaky. I had to go to grocery store and get a couple of bananas.

[Skylark 938]

...only eating at mediocre big chains that have gluten-free menus. I miss being able to walk into a hole-in-the wall ethnic restaurant and order anything, getting omikase in sushi bars without having to take crazy caution to avoid soy sauce, or going for dim sum and taking whatever looked interesting off the cart.

Oh, and right now it's not being able to eat cheese. Dammit.

[eatmeat4good 313]

...For me the hardest part is knowing there are thousands or hundreds of thousands of depressed women sitting on their couch watching their body deteriorate after having been diagnosed with fibromyalgia and told it won't get any better and they are wondering what the hell happened to their lives just like I was for 7 long years. I often think of the depression commercials showing the listless overweight woman who is stoned looking and severely depressed. I was her. I wanna reach them and tell them about gluten. Knowing that 90% of Celiacs are undiagnosed makes me cringe every day. I see it everywhere in people walking around with pot bellies and no muscle tone. I know that is the tip of the iceberg. There are a bunch more who are as sick as those of us who have suffered for years. I want an All Points Bulletin sent to them. Knowledge is power and anyone who knows anyone with Fibromyalgia gets information about Celiac from me. It's all I can do.

[love2travel 396]

The inconvenience of eating at others' homes or at food festivals/fairs. Eating out at restaurants is not difficult for me as I never eat at fast food places or chains. I find that high-end restaurants are far better equipped and knowledgable, not to mention serve vastly superior food!

My husband and I used to plan our trips to Europe around food events. We still do that to a certain extent but I feel left out if I am unable to try delicious samples and trying to communicate that in a foreign language can be rather interesting. However, I had better shut up because I am grateful that I am able to travel.

I am asked out less often to meals as cooking gluten free when you are not used to it is intimidating as well as unsafe.

The hardest thing of all in retrospect is having miscarriages and unable to have any babies. At the time I had no clue that I had celiac. Thankfully I do have lots of nieces and nephews that I borrow!

[love2travel 396]

...For me the hardest part is knowing there are thousands or hundreds of thousands of depressed women sitting on their couch watching their body deteriorate after having been diagnosed with fibromyalgia and told it won't get any better and they are wondering what the hell happened to their lives just like I was for 7 long years. I often think of the depression commercials showing the listless overweight woman who is stoned looking and severely depressed. I was her. I wanna reach them and tell them about gluten. Knowing that 90% of Celiacs are undiagnosed makes me cringe every day. I see it everywhere in people walking around with pot bellies and no muscle tone. I know that is the tip of the iceberg. There are a bunch more who are as sick as those of us who have suffered for years. I want an All Points Bulletin sent to them. Knowledge is power and anyone who knows anyone with Fibromyalgia gets information about Celiac from me. It's all I can do.

Man, I am so with you! I was diagnosed with FMS, too, and hurt all over all of the time. But much of my pain is due to an accident four years ago. And I know that part of it is due to celiac as well.

My heart aches for family members who I am absolutely certain have celiac but do not want to do anything about it (not that I am a doctor but we get to know the signs and symptoms, don't we?).

I love the All Points bulletin idea! I would dearly love for the entire world to be properly informed about the disease and what it can do.

[dilettantesteph 492]

...For me the hardest part is knowing there are thousands or hundreds of thousands of depressed women sitting on their couch watching their body deteriorate after having been diagnosed with fibromyalgia and told it won't get any better and they are wondering what the hell happened to their lives just like I was for 7 long years. I often think of the depression commercials showing the listless overweight woman who is stoned looking and severely depressed. I was her. I wanna reach them and tell them about gluten. Knowing that 90% of Celiacs are undiagnosed makes me cringe every day. I see it everywhere in people walking around with pot bellies and no muscle tone. I know that is the tip of the iceberg. There are a bunch more who are as sick as those of us who have suffered for years. I want an All Points Bulletin sent to them. Knowledge is power and anyone who knows anyone with Fibromyalgia gets information about Celiac from me. It's all I can do.

So true and altruistic of you.

[Debbie48 0]

Being new to this, feeling overwhelmed and not even sure if this is the cause of my health problems.

However, this group is great!

[pricklypear1971 355]

...For me the hardest part is knowing there are thousands or hundreds of thousands of depressed women sitting on their couch watching their body deteriorate after having been diagnosed with fibromyalgia and told it won't get any better and they are wondering what the hell happened to their lives just like I was for 7 long years. I often think of the depression commercials showing the listless overweight woman who is stoned looking and severely depressed. I was her. I wanna reach them and tell them about gluten. Knowing that 90% of Celiacs are undiagnosed makes me cringe every day. I see it everywhere in people walking around with pot bellies and no muscle tone. I know that is the tip of the iceberg. There are a bunch more who are as sick as those of us who have suffered for years. I want an All Points Bulletin sent to them. Knowledge is power and anyone who knows anyone with Fibromyalgia gets information about Celiac from me. It's all I can do.

Ditto on thyroid disease.

And knowing western medicine is not equipped to dx or treat gluten problems...and looking around and finding proof in so many places.

Makes me want to grab someone by the throat and say "open your eyes!!!".

[Jenny (AZ via TX) 5]

I miss being able to be spontaneous and not have to plan everything. I miss being able to go into any restaurant or someone's home and share food, both theirs and mine. For the most part, I'm good with the diet. I never cheat and don't really think about it when I'm at home because I know my food is safe for me to eat.

I have not been back to New Orleans in 5 years. I handle cravings pretty well, but I don't know if I could do this city without really wanting to cheat. I'm originally from there, but grew up in Dallas. We would visit every year and I still have family there. I know it sounds terrible, but just can't do it yet. I miss that!

But overall, I don't worry much unless I'm traveling.

[pricklypear1971 355]

I miss being able to be spontaneous and not have to plan everything. I miss being able to go into any restaurant or someone's home and share food, both theirs and mine. For the most part, I'm good with the diet. I never cheat and don't really think about it when I'm at home because I know my food is safe for me to eat.

I have not been back to New Orleans in 5 years. I handle cravings pretty well, but I don't know if I could do this city without really wanting to cheat. I'm originally from there, but grew up in Dallas. We would visit every year and I still have family there. I know it sounds terrible, but just can't do it yet. I miss that!

But overall, I don't worry much unless I'm traveling.

We need to plan a trip together!!!!

My family is from south LA, my uncle lives in NOLA and I say the same thing...how do I go back??? It's been 4 years for me (Pre-gluten-free).

I made a King Cake Friday. Taste was ok but texture was just wrong. I'll try again and change stuff up...I'll eventually get it right.

[bartfull 569]

I USED to say I am so glad I got to visit New Orleans before Katrina. Now I'm glad I went before being gluten/corn free. The food was absolutely the best I ever had!

[pricklypear1971 355]

I USED to say I am so glad I got to visit New Orleans before Katrina. Now I'm glad I went before being gluten/corn free. The food was absolutely the best I ever had!

You know, a lot of it is gluten-free/cf? Seriously.

Dirty rice, rouxs are easily made with alternative flour...

[Jenny (AZ via TX) 5]

Prickly, I would love to go, but I'm a scaredy cat! If I could just get a po' boy on Magazine and a couple of petit fours I would be happy. Oh yum.

Prickly, if you ever get to Phoenix, let me know. I know you're in Tucson so not that far away.

Bartful, I'm glad you got to experience the food. It is an experience, isn't it.

[pricklypear1971 355]

Prickly, I would love to go, but I'm a scaredy cat! If I could just get a po' boy on Magazine and a couple of petit fours I would be happy. Oh yum.

Prickly, if you ever get to Phoenix, let me know. I know you're in Tucson so not that far away.

Bartful, I'm glad you got to experience the food. It is an experience, isn't it.

I had just mastered muffaletta bread for perfect sandwiches.

And had my King Cakes down. I could have sold those things.

At least I still have raw oysters.... Makes Mandinas a bit tough, though. And let's not talk about Brocato's. I bet CP could do gluten-free, and Emeril's and other high-end restaurants.

I'm betting I can figure out gluten-free beignets in time..., as well as that damn King Cake.

We go to Phoenix once in a while. I'll pm you next time. If you ever come down here let me know!

[srall 112]

We're going to New Orleans this summer...is this going to be hard?

My answer to the OP is "all of the above": I miss convenience, carefree traveling and eating out, not knowing if I have a virus or if I've been glutened, what food might be making me sick this week...

But I love feeling better...

[pricklypear1971 355]

We're going to New Orleans this summer...is this going to be hard?

My answer to the OP is "all of the above": I miss convenience, carefree traveling and eating out, not knowing if I have a virus or if I've been glutened, what food might be making me sick this week...

But I love feeling better...

Google gluten free New Orleans and I'm sure you'll find hints. Please post about your experience!!!

It will be as hard as your choice of restaurants, I think. Stick to high-end ones and you'll fare better. There is a Whole Foods there. Do call ahead to your hotel and see of they can offer help.

[eatmeat4good 313]

Pricklypear- you should post your recipes. I haven't even heard of half of that stuff but it sounds great!

[srall 112]

Google gluten free New Orleans and I'm sure you'll find hints. Please post about your experience!!!

It will be as hard as your choice of restaurants, I think. Stick to high-end ones and you'll fare better. There is a Whole Foods there. Do call ahead to your hotel and see of they can offer help.

Thanks for the advice. We always find a Whole Foods first thing whenever we travel. And I guess we'll be spending a lot of money on dinners out...but it's still New Orleans!

[pricklypear1971 355]

Thanks for the advice. We always find a Whole Foods first thing whenever we travel. And I guess we'll be spending a lot of money on dinners out...but it's still New Orleans!

If you are staying somewhere with a kitchen you could cook - but that's hard to find there unless its a cottage or a liberal B&B.

That's why I have hope of going back soon. My uncle still lives there....so he has a kitchen!

[pricklypear1971 355]

Pricklypear- you should post your recipes. I haven't even heard of half of that stuff but it sounds great!

I know...they really aren't any different than traditional recipes except I switch flour out in the roux.

The bread stuff...that will take a few years to figure out I'm sure!

[BeFree 8]

The hardest part for me is...no beer! I have adjusted to all of the new foods with no problems at all, but my favorite summer treat used to be Blue Moon Summer Honey Wheat beer, which I obviously can't have any more! When I would buy this special seasonal beer on the first warm day of the year, it really felt like summer. I still have some in my fridge from last summer that I haven't had the heart to throw away yet!

I know...there's gluten free beers out there...but it was this special kind that said SUMMER for me. Another kind just wouldn't be the same.

Actually, the beer was the first sign for me that something was wrong. I started to always wake up with the big D after drinking one of the wheat beers. And I thought, WHAT is going on with the beer? Am I just getting old and can't tolerate any alcohol any more? And of course, I started the long process of elimination and food diaries, which led me down the long road to where I am now!