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My Story.: Step One Or Something Like That

RL2011

By RL2011
in Coping with Celiac Disease

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RL2011 Rookie
RL2011
Posted

You and other gluten sufferers are not alone. Here is my stinking story. Ok I will leave out the gory bathroom details. Just read between thelines.

I lived with episodes anywhere from 1 to 5 times a week of mild to severe gut pain and diarrhea for about 10 years; for years prior to that it was just a lot of gas and a big appetite. I hid my problems and thought as a lot of men do, if you don't see the wound or lots of blood then buckle up and deal with it.

About 7 years ago, I hada doctor tell me a I might have a gluten problem and had small intestinal biopsy done and my results were inconclusive for celiac disease. I continued on with life and just dealt with my gut issues. Knowing that I had a gut problem and at the suggestion of my sister I made a partial attempt to limit my gluten but still consumed a lot of beer and bread. I really just cut out regular gluten type pasta.

For many years of my life, Ihave been an active traveler…traveling around the country by motorcycle or snowmobiling many hours in areas without bathrooms. I compensated by planning my day and carrying around toilet wipes. Due to me not being shy and not having a problem with taking care of business when and where needed; both in the woods and gas stations and coffee shops everywhere, I just dealt with it and ignored those annoying knocks on bathrooms all around the country…you know them (is someone in there, is everything ok).

Last August I got a bad rash while on the road on a motorcycle in the southwest desert with temperatures well over 100 degrees for most of my trip. After 25 or so days on the road I saw a few doctors (GP, dermatologist, and allergist). The dermatologist concluded (without biopsy) it was pityriasis rosea and said it would go away on its own in a few weeks. Time and life flushed on…as usual with gut issues.

In April 2011, I went infor a scheduled colonoscopy and told the doctor that I feel better when I limit my gluten. While at my initial consultation, I told him that I have been living with gut pain, bloating, and diarrhea for a long time. I told him about my previous doctors' findings and he said I probably need more fiber and suggested I increase fiber and to continue eating gluten. He scheduled a Celiac Serology blood test for me which I took about 3 weeks later. Immediately after this initial appointment I started on a quest to consume greater amounts of fiber from various sources which all contained a lot of gluten. After my increased fiber and gluten intake and continued feeling bad, the results of my blood tests revealed that "Results may support a diagnosis of celiac disease" (I tested positive for DGP IgA).

A few days after getting my blood results while on a short motorcycle trip with a few friends and began feeling real bad. I told my friends I would meet them at the hotel where we planned to stay that night. We went in separate directions and I rode alone for a short while then found a gas station with a bathroom. While waiting for the bathroom to be free I had to walk around back of the gas station and puke. Puking was not a choice and neither was my rushing into the now available bathroom and having a 30 minute gut wrenching violent elimination. I could just imagine if anyone was paying attention as to what they thought I was going through in the middle of the afternoon. I then rode forabout 50 miles to the hotel and had to stop twice to take care of business.

During my ride to the hotel I decided that it is about time to learn about gluten and celiac disease. I searched websites using my iPhone that night and found a great deal of information and bookmarked many sites. Last Saturday (1 week ago) was my last consumption of gluten. While at home this past week; going from having a gut that felt like I had been punched many times along with many bouts of daily diarrhea I am starting to feel a better. I have had no gluten this past week and as of today I feel less foggy and more alert and had my first semi-solid movement in a few weeks.

I understand why some people let affects of gluten intolerance and other issues make them somewhat phobic aboutbeing in public along with overall feeling of malaise experienced from it resulting in stopping them from living life fully. And I understand why thick headed and stubborn block-heads like me ignore things we should not. Having said that, I am on a learning trip to get healthier and a change of my eating habits from here on.

I feel like I am in somesort of 12-step program and I am now by writing this admit that I suffer from Celiac Disease. I don't know why Irambled on here other than to say it is time for me and anyone suffering to stop suffering and make the necessary changes. That said as I kick myself in the ass for letting things go for so long.

Rich

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mushroom Proficient
mushroom
Posted

Congratulations on your moment of insight. And your rambling on - well, it is what one could call testifying :) - Getting it out in the open and admitting it for all the world (and you) to acknowledge and hear. Now that you have done this there is no turning back! You are a gluten free eater - yay. May your symptoms resolve quickly and you live a long and happy life free of the bathroom and urgent nature calls.

Many of us regret the length of our journeys to this decision and the numbers of doctor visits where we have been told everything except the plain truth - that it is gluten that is our problem, not lack of fiber, not IBS, not any of the zillion zany ideas they come up with. So don't feel alone, you are in good company here. In fact, you found out earlier than a lot of us :P

Good health on your gluten free journey. :)

notme Experienced
notme
Posted

congratulations, rich :) you are facing this head on. it took several months of denial (after 25 years of misdiagnosis and suffering) when they handed me the celiac dx for me to finally jump on the gluten-free wagon. this forum is the best place to ask questions/post info/ask questions/rant (lol) honestly, these fine people on this website saved my life! good luck :)

RL2011 Rookie
RL2011
Posted
  • Author

congratulations, rich :) you are facing this head on. it took several months of denial (after 25 years of misdiagnosis and suffering) when they handed me the celiac dx for me to finally jump on the gluten-free wagon. this forum is the best place to ask questions/post info/ask questions/rant (lol) honestly, these fine people on this website saved my life! good luck :)

Glad to hear your life is saved :) and I am glad to have found this site too. I am trying to take this head on, however, for the past few weeks I still have a 12-pack of Heineken in my refrigerator that I would rather drink than throw out. I like beer and that is one of the things I will miss. I know there are a few gluten-free beers but I have not found one that I like.

notme Experienced
notme
Posted

i suppose you have tried the redbridge? that's what i drink - it's semi-available and reminds me more of killian's than beer beer. the beer thing was huge for me, too. i'm a jersey girl: we drink beer. we don't pump gas haha i drink chardonnay on occasion, but beer and pizza was a major food group for me. i would hate to think how violently my body would rebel if i cracked a heine now! oh, and *beware* once your body starts absorbing things again, check your tolerance. mine is waaay lower

RL2011 Rookie
RL2011
Posted
  • Author

Hey Jersey Girl! I have tried Redbridge and do not find it refreshing and crisp. The beer I have always liked are Heineken, Corona, Coors, and Guinness. If I cannot find a gluten-free beer similar to say Heineken Lite then I will look for a partner and buy or start a small craft brewery and do it myself.

Do you still live in NJ?

eatmeat4good Enthusiast
eatmeat4good
Posted

Oooh Rich,

Welcome, and thanks for writing your story.

I just wanna say that your Heineken might be refreshing anc crisp, but the next day will not be!

Don't drink it!

I had one last beer too, and I paid dearly for it.

Just my two cents.

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RL2011 Rookie
RL2011
Posted
  • Author

Oooh Rich,

Welcome, and thanks for writing your story.

I just wanna say that your Heineken might be refreshing anc crisp, but the next day will not be!

Don't drink it!

I had one last beer too, and I paid dearly for it.

Just my two cents.

That beer sits in my refrigerator as a reminder of my eating/drinking past. And I will not drink it. I will throw it out tonight. Damn you gluten!

notme Experienced
notme
Posted

Hey Jersey Girl! I have tried Redbridge and do not find it refreshing and crisp. The beer I have always liked are Heineken, Corona, Coors, and Guinness. If I cannot find a gluten-free beer similar to say Heineken Lite then I will look for a partner and buy or start a small craft brewery and do it myself.

Do you still live in NJ?

nope, i am in east tennessee - but you know what they say: you can take the girl out of jersey, but you can't take the jersey out of the girl lol - going up to visit in july and hopefully i will be able to resist the PIZZA!! where are you at? sorry to say the redbridge is the only beer i have been able to purchase here, florida, new mexico, etc - haven't really found any others. maybe you better get started on that brewery... ;)

RL2011 Rookie
RL2011
Posted
  • Author

nope, i am in east tennessee - but you know what they say: you can take the girl out of jersey, but you can't take the jersey out of the girl lol - going up to visit in july and hopefully i will be able to resist the PIZZA!! where are you at? sorry to say the redbridge is the only beer i have been able to purchase here, florida, new mexico, etc - haven't really found any others. maybe you better get started on that brewery... ;)

I live in Huntington, NY (Long Island). I am looking to move from here but just have not decided on where yet. I have never made any home-brewed beer. My plan for the day after tomorrow is not set in stone and open for changes. When you go to NJ...just remember to stay away from gluten laden pizza. Let me know if you need a pizza watchdog.

notme Experienced
notme
Posted

I live in Huntington, NY (Long Island). I am looking to move from here but just have not decided on where yet. I have never made any home-brewed beer. My plan for the day after tomorrow is not set in stone and open for changes. When you go to NJ...just remember to stay away from gluten laden pizza. Let me know if you need a pizza watchdog.

lol i will! i used to live in north jersey, wantage - right off the ny/nj/pa line at the bottom of high point mountain. through the woods to the delaware river (milford, pa) very pretty up there. east tennessee is a beautiful place - friends of ours come down from nj to ride their harleys in the mountains. smoky mountains are very popular to ride. i prefer the woods on 'horse' the 4-wheeler. less stupid people trying to run over/kill you haha i do miss The City, though! but not the freezing cold :) i bet you have more gluten free choices up there - i'm planning to explore. this is my first year gluten-free so have made many discoveries. keep me posted on that beer!!!

T.H. Community Regular
T.H.
Posted

I believe this beer is the one my father and brother enjoyed a lot - although I don't think it's available in NY, yet:

Open Original Shared Link

Maybe soon. They only just started selling outside of their state, so it's mostly in the southwest at the moment.

My brother and father's beers of choice before diagnosis were usually Guinness and close equivalents. :-)

IrishHeart Veteran
IrishHeart
Posted

I like beer and that is one of the things I will miss. I know there are a few gluten-free beers but I have not found one that I like.

yeah... Guinness is a tough one to give up..sigh...

My guy likes the Bard's or New Grist and Green's --that one's expensive!) He also likes LongBow cider and Wood Chuck.

He is not gluten-intolerant or a celiac but went gluten-free for me. I think he only misses the beer. He is rewarded frequently for his sacrifice. :lol:

ETA:I am a bit of a gourmet cook and he does not "notice" or care we are gluten free.

Best wishes to you! :)

RL2011 Rookie
RL2011
Posted
  • Author

I believe this beer is the one my father and brother enjoyed a lot - although I don't think it's available in NY, yet:

Open Original Shared Link

Maybe soon. They only just started selling outside of their state, so it's mostly in the southwest at the moment.

My brother and father's beers of choice before diagnosis were usually Guinness and close equivalents. :-)

Thanks for the suggestion; I will look for that beer and try it.

Cheers!

RL2011 Rookie
RL2011
Posted
  • Author

yeah... Guinness is a tough one to give up..sigh...

My guy likes the Bard's or New Grist and Green's --that one's expensive!) He also likes LongBow cider and Wood Chuck.

He is not gluten-intolerant or a celiac but went gluten-free for me. I think he only misses the beer. He is rewarded frequently for his sacrifice. :lol:

Best wishes to you! :)

More beer to try... Thanks for the help and sounds like your guy is lucky. :)

IrishHeart Veteran
IrishHeart
Posted

More beer to try... Thanks for the help and sounds like your guy is lucky. :)

naw....I am the lucky one--he's been extraordinary throughout my long baffling illness (pre-diagnosis)!A real sweetie.

Hope you find one that tastes good to you! Cheers! :)

RL2011 Rookie
RL2011
Posted
  • Author

naw....I am the lucky one--he's been extraordinary throughout my long baffling illness (pre-diagnosis)!A real sweetie.

Hope you find one that tastes good to you! Cheers! :)

:)

I hope so too! And I will keep an eye out for a good gluten-free beer too.

IrishHeart Veteran
IrishHeart
Posted

And..I meant to say...best wishes in your recovery of good health. You had a long road to get here, but now, you will feel better and better!! My story is long and gruesome (dozens of awful symptoms)..and for the first time, I see myself getting well. :) yaay!

Here's to good health!

IrishHeart Veteran
IrishHeart
Posted

:)

I hope so too! And I will keep an eye out for a good gluten-free beer too.

:lol: :lol: :lol: :lol:

RL2011 Rookie
RL2011
Posted
  • Author

And..I meant to say...best wishes in your recovery of good health. You had a long road to get here, but now, you will feel better and better!! My story is long and gruesome (dozens of awful symptoms)..and for the first time, I see myself getting well. :) yaay!

Here's to good health!

Glad to hear you see yourself getting well. That's nice!

Thank you for your words of encouragement! I will keep a positive attitude while navigating the ups and downs by keeping myself on the straight and narrow gluten-free food path.

Roda Rising Star
Roda
Posted

lol i will! i used to live in north jersey, wantage - right off the ny/nj/pa line at the bottom of high point mountain. through the woods to the delaware river (milford, pa) very pretty up there. east tennessee is a beautiful place - friends of ours come down from nj to ride their harleys in the mountains. smoky mountains are very popular to ride. i prefer the woods on 'horse' the 4-wheeler. less stupid people trying to run over/kill you haha i do miss The City, though! but not the freezing cold :) i bet you have more gluten free choices up there - i'm planning to explore. this is my first year gluten-free so have made many discoveries. keep me posted on that beer!!!

There is a pizza place in Knoxville that will do special order gluten free pizzas etc. You do need to phone ahead because the owner is the only one who makes and prepares it in a separate area. The name of the place is Roman's Pizza. I have not been yet but want to go. There is a Mello Mushroom in Johnson City and Asheville. I think there are a few other good places in Knoxville area too, I just don't know of the names.

Roda Rising Star
Roda
Posted

Notme here are some links I found for you.

Open Original Shared Link

Open Original Shared Link

notme Experienced
notme
Posted

There is a pizza place in Knoxville that will do special order gluten free pizzas etc. You do need to phone ahead because the owner is the only one who makes and prepares it in a separate area. The name of the place is Roman's Pizza. I have not been yet but want to go. There is a Mello Mushroom in Johnson City and Asheville. I think there are a few other good places in Knoxville area too, I just don't know of the names.

i am about to try roman's! i just have to co-ordinate when the guy is there and get my kid to bring it home to me (yeah, i trust no one and i know *exactly* where the bathroom is here lolol) he works at lexus in knoxville so i think it's one more exit up on the 'pike :) i heard they have a gluten-free buffet! (not every day) i also am going to ask when they are having that. did you go to the celi-act convention a couple of months ago? i read about it in 'cityview' after the fact :( my youngest is moving up to johnson city for school (ETSU) so if the mushroom is indeed mello, i will have somewhere to eat when we move her up there. thanx!! so much!! i tend to feel like i am the only celiac in east tn lol ps also 'brixx' at turkey creek has gluten-free pizza - haven't tried it yet. i'm so paranoid!!!!

RL2011 Rookie
RL2011
Posted
  • Author

i am about to try roman's! i just have to co-ordinate when the guy is there and get my kid to bring it home to me (yeah, i trust no one and i know *exactly* where the bathroom is here lolol) he works at lexus in knoxville so i think it's one more exit up on the 'pike :) i heard they have a gluten-free buffet! (not every day) i also am going to ask when they are having that. did you go to the celi-act convention a couple of months ago? i read about it in 'cityview' after the fact :( my youngest is moving up to johnson city for school (ETSU) so if the mushroom is indeed mello, i will have somewhere to eat when we move her up there. thanx!! so much!! i tend to feel like i am the only celiac in east tn lol ps also 'brixx' at turkey creek has gluten-free pizza - haven't tried it yet. i'm so paranoid!!!!

I will not eat pizza at a place that serves gluten-free pizza unless the people working there have celiac disease. I was in a local pizza place and watched this young kid make my gluten-free pizza. He placed the pizza dough onto the same prep counter that was covered in regular wheat flour. I ended up not getting pizza there.

Beware of false gluten-free pizza makers...

Roda Rising Star
Roda
Posted

I will not eat pizza at a place that serves gluten-free pizza unless the people working there have celiac disease. I was in a local pizza place and watched this young kid make my gluten-free pizza. He placed the pizza dough onto the same prep counter that was covered in regular wheat flour. I ended up not getting pizza there.

Beware of false gluten-free pizza makers...

Good advice! The Mellow Mushroom here has a dedicated prep room, different toppings and separate pans. Roman's has a dedicated area also and only the OWNER makes it to prevent cc.

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