Hello From Chicago

[Scotty J]

Hi, name is Scott. 53, musician, husband and father of a cool 5 year old boy.

Even as I'm waiting for a blood test, it's has been made 110% clear what I have been suffering from....

$8000 worth of CAT scan, colonoscopy, numerous blood and stool tests... nothing was being found as a cause... my frustration had been mounting for months (even tho looking back I realise now that I was being pounded by symptoms for years without putting 2+2 together). Close to suicide many times because of the feelings of guilt (am I REALLY sick or is this in my mind?), frustration at no clear diagnosis by my doctor... frustration because my business failed primarily because I simply could not get through my days because of depression, fatigue and all the other wonderful manifestations that I have been plagued with...

So, as I said, I had all these tests, all coming back negative. The doctor is at a loss.

And then my friend suggested Celiac's could be the culprit.

Turned out that my best friend's wife has had this for a while, and he suggested that I check out Celiac's. My jaw dropped as I researched. It was a revelation, although it was a combination of relief that maybe we now had a name for what I felt was slowly killing me, and "oh sh**, how am I going to deal with this?"

And, true to what I have read, my doctor, while knowing "of" Celiac, had no clue about it. I had to educate him on details, and he still was apprehensive about a patient telling him what was wrong (seems like is the case so many times today).

Without going flat out and getting an endoscopic biopsy, I guess I have come to terms with this (as a beer and pasta lover). The knowledge that a biopsy coming back positive would be a black mark "pre-existing condition" in the eyes of the insurance companies for the rest of my life, my wife and I decided that regardless of what the blood test comes back as, we pretty much feel like this is the path I have to walk.

My wife and I love Italy, travel there every year or so, and love our pasta, I have been a beer enthusiast for years (on stage, it's always been pretty much part of my stage gear!), and as the last 4 months have been unfolding (when this really started hitting me hard), I found myself drinking more and more beer, trying to numb myself to the discomfort (mental and physical) that I was suffering from... and how ironic to find that my eating and drinking binges were only making things worse. For the record, I have lost 30 pounds in the last 3 months. With all I ate and drank, I should have been 375 pounds, not 175.

And I as I read others' stories, I feel almost vindicated.

When my wife and I had our boy, my depression took a big toll - I refer to it as a man's version of post-natal depression, brought on by continued lack of sleep, stress from starting a new business (after 14 years at a company that in itself was dysfunctional and highly stressful), and who knows what else. So for three years it took its toll, but other things were going on in my physical background that were gnawing at me bit by bit.

Early this year, depression had become severe enough that my doctor changed and upped my meds, and we discovered that I was suffering from very low testosterone... so every morning I have to slather on this alcohol-based gel over my upper torso (absorbed thru skin) and it made my mornings less than sunny to go thru that unpleasant ritual every day, furthering my negative feelings, even as it helped a little overall. But I was still suffering unexplainable (at the time) symptoms. And I was beginning to feel like a hypochondriac as I would have no explanation for the chronic fatigue, the intestinal problems that were starting to be more and more common... things like my extreme loss of height (I used to be 6'5", even as I had a disc removed, I am now just a shade taller than 6'), a dull jab of ache in my right abdomen... weird stuff.... and once again, all this was really messing with my mental state.

In July our band played at a "Ribfest". We loves our ribs, so this was (pardon the pun) Hog Heaven for the wife and me. So before we played I had a sample plate (no sauce even)... 3 measly ribs.... they tasted great....

3am I woke up with the worst food poisoning I have ever had (and I've had a few...). I was never the same after that.

The pain got more pronounced, the GI system was going haywire all the time, I started breaking out in rashes that at first made me think skin cancer, they looked like warts, bled when scratched and they were all over my buttocks, nape of my neck, knees, and everywhere. Gee, I felt so unattractive to my wife (and my sense of self esteem was in the negative numbers), who even as she was understanding, was perplexed and concerned and probably also wondering under her breath whether this was all in my head...

And I had to continue to hold down the home while the wife's at work, and handle the day-to-day activities of our boy, getting him ready for pre-K, playing with him after school, and then falling apart about the time my wife would come home, only to have to "pass the torch" to her while I would go pass out.

Now we are in the beginning stages of cleaning out the pantry and making room for gluten free foodstuffs... what a challenge, especially in the cost of all the specialty foods that I need...

To make it more frustrating, some look at this as an "allergy" like a runny nose... yeah, you're allergic, not a big deal... but they have no concept or education as to the damage that I probably have been subjected to as a result. My sister has Lupus, and after her 10 year ordeal to finally find a doctor who was sharp enough to correctly diagnose her condition (she also was at the edge of the cliff in terms of her dealing with not finding doctors who were in-the-know, and were referring her to shrinks instead..), people kind of shrug off the condition as "minimal".

"Walk in my shoes for year" is all I can think. Right now, even as I still feel horrible I guess I can look forward to feeling better as things begin to heal but that's miles away yet.

And though it all, all I can say is that if it were not for my wife Jen, my boy Gavin and my father I would have no doubts as to what I would have done. It was close to being all over for me. And the gratitude I have for my friend and his wife for being sensitive and educated enough to create this new awareness in us is immeasurable.

And finding this site, as well as ones in Italy I at least feel like I'm not alone anymore. That counts for sure.

Well, long-winded for sure, that's my intro. I'm glad to be able to come here now for more knowledge and information, and will be back!

Ciao a tutti!

Scott

[jerseyangel]

Hi Scott--welcome!

I've very glad you found us--take some time to read through the archives and don't hesitate to let us know how we can help you navigate your new gluten-free lifestyle.

Rest assured that many, many (many) of us have gone through what you have to get here, and we understand completely. I wasn't diagnosed until I was 49, and by then I was so sick I had to quit my job and several people in my life thought I was a hypochondriac.

Best of luck and I hope you'll come back and post often!

[Scotty J]

Thanks Patti. I've never been a disciplined person until now - yee haw!

I find it amazing when I read of these kind of stories, and here I am part of it now.... who knew!

[kenlove]

Hi Scotty,

I would love to reply but swamped. Im also from Chicago, live in hawaii and working this month in INdia.-- Do you know Bobby Lewis and some of jazz guys?

ANyway I was diagnosed 5 years ago at age 53 -- took them 6 months to figure it out.

the dietary changes are worth it but it takes some getting used too.

I do have to run but if you remind me at the end of the month i'll give you all the grizzy details..

good luck

ken

Thanks Patti. I've never been a disciplined person until now - yee haw!

I find it amazing when I read of these kind of stories, and here I am part of it now.... who knew!

[ranger]

Welcome Scott,

Do you know where Geneva is (west of Chi)? I went to high school there.

Celiac is quite a journey and seems very hard to do at first, but , after you get used to it, it does get easier. I eat Pasta all the time, but I don't drink beer anymore (gluten-free beer too pricey). Now when I drink, I drink wine, so it's no biggy, and I've heard it's not bad being gluten free in Italy. Feel free to ask away about anything -someone on this forum will have an answer from food questions to med questions. Just wanted to say welcome.

Susan

[Scotty J]

Thanks to you both, yeah I actually live in South Elgin, just North of Geneva!

I have a friend in Spain and many in Italy, and I found it typical that over there, there is such a huge amount of awareness among the general populace than there seems to be here in our own medical community.

And my close friend in Milan just said "hey, it's another reason why you should just move here"... like I needed a reason!

Yup, beer man, but always loved wine, so there you go... with the occasional dirty martini!

[kenlove]

Worked in Milan last year - Near Wagner station.

It is very eay to survive there. A few members of the forum also live there.

Enough reasons and you might move!

-think of it as sa good excuse to get healthy

Thanks to you both, yeah I actually live in South Elgin, just North of Geneva!

I have a friend in Spain and many in Italy, and I found it typical that over there, there is such a huge amount of awareness among the general populace than there seems to be here in our own medical community.

And my close friend in Milan just said "hey, it's another reason why you should just move here"... like I needed a reason!

Yup, beer man, but always loved wine, so there you go... with the occasional dirty martini!

[Scotty J]

Small world! We were there last Feb., we usually rent an apartment around Corso Sempione, our very good friends live in Rho, close to San Siro stadium...

Last time I was in Kona was 1990 (King Kameamea)(sic), I can only only imaging the changes!

[Scotty J]

double post

[kenlove]

its really time you come back to Kona -- yeah lots of changes and some actually for the better!

Besides milan I also spent time in parma which was a treat.

I am really enjoying india.

So what type of music do you play?

[Scotty J]

I kind of specialized in being other people, now that I look back on it! I did a Cheap Trick tribute band for 15 years (The Dream Police), "playing" Rick Nielsen (with all his goofy guitars, etc.) and have been playing bass in an AC/DC tribute (Downpour) band for 6 years now (there's a bunch of YouTube videos out there I'm told...)

And then I just kind of muck around in the studio when I feel up to it. Lame Advertisement/scooterjband

Recently tho it's been hard to focus, so maybe more stuff later....

I loved the Big Island. I got to drive around it one day, and really dug going thru all the different climates, from rainforest to sugar cane fields. Amazing place, great people!

[digmom1014]

Welcome to the board! As another former Chicagoan and South Elgin resident you have got it made. There are some great health food stores in Geneva and even Little Travelors in Geneva has a great gluten-free section.

Of course, Trader Joe's and Whole Foods are all over and let me suggest trying the Glutino pizza duo pizza-the crust is great!

There is a great bakery, not far from you in Schamburg-Delafield's that I found last summer. Their baked goods and french bread are good or even better than "regular" non-gluten-free foods. I actually freeze the mini loaves and take them to italian restaurants to dip in the olive oil/spice that they have on the table. (of course, have your own plate to dip into) I also have had no problem with bringing my own pasta to restaurants and have that with their great sauce!

Maggiano's, by Woodfield, has gluten-free pasta on their menu as well as several other dishes. The chef told me since it is a scratch kitchen-they will make anything you want. Also by Woodfield is Big Bowl and they have a whole gluten-free menu. (Thai peanut noodles are to die for)

Google Chicago gluten-free restaurants and so many come-up. Also, there is a radio host on WGN that is a celiac and a foodie. Check out the recommendations.

[kenlove]

thanks for the info.

guess you'll have to get back to the big island one of these days

at least I Know where to eat here!

will be in chicago next june -- hope youll be playing someplace then

take care

I kind of specialized in being other people, now that I look back on it! I did a Cheap Trick tribute band for 15 years (The Dream Police), "playing" Rick Nielsen (with all his goofy guitars, etc.) and have been playing bass in an AC/DC tribute (Downpour) band for 6 years now (there's a bunch of YouTube videos out there I'm told...)

And then I just kind of muck around in the studio when I feel up to it. Lame Advertisement/scooterjband

Recently tho it's been hard to focus, so maybe more stuff later....

I loved the Big Island. I got to drive around it one day, and really dug going thru all the different climates, from rainforest to sugar cane fields. Amazing place, great people!

[emorgan816]

Hi Scott!

Redbridge beer is the best one that is gluten-free and Tinkyada pasta is awesome. Schaar pasta is also really good. If you you love pasta you HAVE to go to Da Lucianos in River Grove. Here is the website Open Original Shared Link

Biaggi's also offers really good gluten-free pasta Open Original Shared Link. I'm a pasta snob and I have not been disappointed with these gluten-free versions and restaurants. I make lasagna, my own mac and cheese, pasta salads, and no one has been able to tell it from the glutenated pasta versions. You can buy the pasta at Jewel, Woodman's or Meijer's that I know of. I'm sure other stores have them but by me out here in the burbs those are the major chains that carry Tinkyada and Schaar's.

I would not get the biopsy either as insurance will say pre-existing. There was just an article about a 16 year old girl in Chicago whose insurance company went back in her files after her diagnosis and determined it was a pre-exisitng condition and canceled her insurance! Crazy.

Good luck! Please call me with any questions (my number is listed on my website link below) I run a Celiac Support Group and am more than happy to help you find a group close to you or answer any questions.

Elizabeth Secora

McHenry Celiac Support Group

www.mchenryceliacs.com

[labsr4me2]

Welcome,

I was just recently diagnosed (this year). It is taking it's ups and downs on me as well. I am gratefully to have such a supportive husband.

I am glad to hear you are sticking it out nad making this your new life style. It is definitely a challenge to get used to.

I have to give up: String Cheese

Chicken

Oyster

Gluten

Adzuki bean

Cornish Hen

Pollack

Teff

Black Bean

Duck

Shrimp

Wheat (not gluten-free)

Black eye pea

Partridge

Barley malt

Borage Seed

Garbanzo

Quail

Cinnamon

Castor Oil

Lentil

Squirrel

Dextrose

Coconut

Mung

Bacon/Ham

Gelatin plain

Corn oil

Pinto

Pork

Guarana

Cottonseed

Soy bean

Goose

Maltodextrin

Peanut oil

Soy cheese

Grouse

Soy Sauce

Soy-miso

Anchovy

Sucanat

Sesame

Cashew

Bass

Barley (not gluten-free)

Soy oil

Peanut

Clam/Conch

Buckwheat (Kasha)

Sunflower

Pine nut

Crab/Eel

Corn (ALL)

Canola

Pistachio

Frog

Kamut (not gluten-free)

Almond Extract

Poppy

Lobster

Popcorn Aspartame

Safflower

Mollusks

Rye (not gluten-free)

Carrageen

Sesame

Mussels

Soba (may contain gluten)

Corn Syrup

Sunflower

Octopus

Couscous (not gluten-free)

Guar Gum Tomato Tofu Pumpkin

Ketchup

MSG

Pepper, black & white

Allspice

Avocado

Bitter Melon

Persimmon

Pomegranate

Coconut Milk

Prickly Pear

Starfruit

Soda

Duck Egg

Goose Egg

Ice Cream

Quail Egg

Salmon roe

American cheese

Blue cheese

Arabic gun

Aloe

Olives-green & black

Radish

Rhubarb

Juniper

So I am right there with you in the depression part. I truthfully hardly ever leave my house anymore. I am afraid to eat out. (I keep getting sick). I do not like goint to other peoples houses and having ot always say "no thank you" when they keep offering me food. (even though I have explained it all MANY times to them). I also have troubles using any products with gluten in them. So hugging or kissing someone that uses these products also make me sick. I sometimes wish I had a bubble to live in. I am a mom and try very hard to stay up beat but it is an every day struggle.

I am sure it will get better as things form a pattern and start to feel more "normal."

Anyways, glad to hear you found this site. (It has helped me lots).

I just live right over the border in Wisconsin....so not too far away. I hope you get back in to the music thing.

Take care