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Running From Crazy


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#1 RunningPickle

 
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Posted 03 November 2010 - 09:26 PM

So I was diagnosed with Celiac's Disease when I was 17. The events leading up to my diagnosis were miserable. I'd grown up thinking a stomach ache after eating a meal was normal. My aunt would tell me I eat too fast, or my mom would say I just wanted to get out of chores. By my junior year of high school, the pain was unbearable. Initially thinking I had the stomach flu, I stayed home, drank OJ and choked down lightly buttered english muffins. I curled up in pain. I went to the doctor time and time again and run through the gamut of testing. I spent hours at the Children's Hospital getting ultra sounds, nuclear imaging, and upper GI's. There was a three week wait to see the gastrointerologist, but my father pleaded with the nurse to get me in sooner as I lie curled up in the fetal position sobbing from the pain. I was seen the next morning and finally a biopsy delivered my fate: I am a Celiac.

I wasn't traditional of a Celiac. I wasn't thin and wasting. I didn't have the leaky bowel. I was avg size, avg build, avg kid... but with stomach aches. After seeing a nutritionist, my mom and I spent 3 hours in the grocery store reading labels. This was almost 13 years ago, when almost nothing was labeled gluten-free, and if it was, you probably didn't want to eat it. The options were slim. And as a teenager, I was already a picky eater. I liked three things: pasta, bread and pasta. Now I had nothing...

My mom and I worked hard to adjust to my new diet. By the time I left for college I was used to the constraints of living gluten-free and adapted accordingly. THen my junior year, I went to China to be an English teacher. I was in the far NW province of XinJiang, a remote region by Chinese standards. I did as best as I could, but my language skills didn't allow me to read the ingredients well enough to know what I was eating. The chef at my school didn't know the meaning of gluten-free. I tried my best, but then I noticed that when I was eating gluten foods, I wasn't having the symptoms of before. So I started eating more. I stopped being cautious. I gave up my gluten-free life.

Nine years later, I've found the man of my dreams. I know he's the man I'm destined to be with for the rest of my life. He's insisted I return to my gluten-free diet and he's given up gluten too, just so he doesn't risk the cross-contamination. The naivete of youth has destroyed my health. They myths of Celiac's Disease: that I could outgrow it, that cheating wouldn't hurt, etc., plagued my life and the information I had about the disease. I've become more informed. I've reeducated myself. My best friend and true love is my biggest supporter. And I'm here to reclaim my health and my life.

Wish me luck.
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#2 mushroom

 
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Posted 04 November 2010 - 01:58 AM

Welcome, RunningPickle.

What you have learned is that it is possible to have a holiday from gluten symptoms; it was this "holiday" that doctors used to use to proclaim that 'children outgrow celiac'. We now know that that only a very few rare individuals have total remission of celiac; for most of us it returns with a vengeance. I had a similar holiday period during my late teens early 20's, but at 29 it hit again, only I had no diagnosis and thought it was corn that was causing my problems (not having been exposed to corn except for an occasional corn on the cob prior to that).

So yes, what we don't know in our youth can do us harm in our later life - I have RA and psoriasis to attribute to gluten. But we can't do much about the past, the future is what we can change. How wonderful for you to have a supportive partner to keep you on the "straight and narrow" and willing to go gluten free so that he doesn't cc you. You are a very lucky gal :)

As for what we can do for you, fire away with any questions.

One thing I would suggest is that you have your PCP run blood tests for vitamin and mineral deficiencies because gluten intolerance/celiac is a disease of malabsorption even if you are not painfully skinny or overweight.. For some of us it causes us to gain weight - the mechanism is not entirely clear but my theory is that the body realizes it is not absosrbing the nutrients it needs so hangs on to every calorie that comes its way because it sees the lack of nutrients as a time of famine :o

And then again there are some who are normal weight, some who are "silent" celiacs with no observable symptoms and diagnosed by accident. But we all have one thing in common - gluten is harming us one way or another and we must eliminate it. I do wish you good luck on your gluten free journey and we are here to help. There is oodles of helpful information on this board so read as much as you can. And again, welcome.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#3 GFinDC

 
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Posted 04 November 2010 - 02:18 AM

Welcome to the forum RP. It's not too late to start the diet again so hop on in and get going with us! :D We all got here one way or another and all have things we can learn from each other. Congrats on your new hubs and getting back to a healthy diet.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#4 dilettantesteph

 
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Posted 04 November 2010 - 05:46 AM

It sounds like you have found a wonderful life partner. Be sure to cherish him always.
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#5 Rocknroll Celiac

 
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Posted 04 November 2010 - 03:25 PM

So yes, what we don't know in our youth can do us harm in our later life - I have RA and psoriasis to attribute to gluten. But we can't do much about the past, the future is what we can change.

I also have developed RA, and some psoriasis. I find that gluten severely inflames me. There are other things that i avoid eating to keep down the symptoms of the RA (the psoriasis is meagre and reasonably controlled). But what have you done to help correct your RA?

I take an enzyme called wobenzym which promotes joint regeneretion, and it helps, but my hands are still quite swollen. I was seeing doctors and taking all sorts of pills to help treat it, but nothing made as much of a difference as cutting gluten out. It also didn't help that I spent most of my young adult life drinking and partying, while working in a kitchen and living on a steady diet of pasta's and sandwiches.

I've been all over arthritis sites, but I don't believe in taking prescribes pills or biologics, as none of the other pills and treatments that i took cured me at all. And most of the biologics are immune suppressants, which is just plain frightening. It's like, have RA or be sick all the time... what a trade!

Any suggestions?
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#6 mushroom

 
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Posted 04 November 2010 - 04:20 PM

So yes, what we don't know in our youth can do us harm in our later life - I have RA and psoriasis to attribute to gluten. But we can't do much about the past, the future is what we can change.

I also have developed RA, and some psoriasis. I find that gluten severely inflames me. There are other things that i avoid eating to keep down the symptoms of the RA (the psoriasis is meagre and reasonably controlled). But what have you done to help correct your RA?

I take an enzyme called wobenzym which promotes joint regeneretion, and it helps, but my hands are still quite swollen. I was seeing doctors and taking all sorts of pills to help treat it, but nothing made as much of a difference as cutting gluten out. It also didn't help that I spent most of my young adult life drinking and partying, while working in a kitchen and living on a steady diet of pasta's and sandwiches.

I've been all over arthritis sites, but I don't believe in taking prescribes pills or biologics, as none of the other pills and treatments that i took cured me at all. And most of the biologics are immune suppressants, which is just plain frightening. It's like, have RA or be sick all the time... what a trade!

Any suggestions?


I initially quit eating gluten before I knew it was a problem for me, just to see if it would help my RA because some I knew someone who ate gluten free to treat his ankylosing spondylitis. Unfortunately, I have not had a great deal of benefit with my RA and psoriasis from being gluten free.

I initially did the RA DMARDs (methotrexate, sulfasalazine with diclofenac, plaquenil) and all worked initially and then I had bad reactions to them - methotrexate damned near killed me and Plaquenil made my psoriasis so much worse, diclofenac nearly did in my kidneys :unsure: :rolleyes: ). Each time I quit a medication it would take the RA a couple of months to return, but it always came back worse. I tried leflunomide (for one week - am sure it contained gluten). None of the creams, ointments, lotions or potions do anything for my psoriasis. I have had it on both heels for three solid years (very painful) and just recently noticed some improvement. Two and a half years ago I gave in and started taking Humira - what a godsend that is for me. That has cleared my psoriasis except for my heels, and I have had no RA flares since I have been on it :) I was concerned (and still am) about the general immunosuppressant aspect of it, but I have actually had very little illness while I have been on it, compared to previously. I have had a coughing flu followed by acute bronchitis, but none of the colds and follow-on bacterial infections I normally would get. It was explained to me that taking this medication would not make it more likely for me to catch anything, but would make it harder for me to fight things off (like H1N1 :huh: I presume). It is recommended that you stop the shots when you are fighting infection. Anyway, I have not been catching colds (although I have a sister arriving to stay tomorrow who is currently staying with another sister who has developed a cold, so that will be a good challenge).

I recently wondered if three years gluten-free would have had any effect on my RA and psoriasis, so quit the Humira for a two-month trial. After two months my psoriasis is coming roaring back again, and I don't think I am going to wait for the crippling effects of the arthritis because the only pain med I can take is Tylenol and while it dulls the pain a little it doesn't do a lot. So I'm back to my Humira shots again. I have been avoiding our local bridge club where I used to pick up most of my infections because people do insist on coming when they are sick and spreading the joy :( This is a shame, but I still do social bridge where my friends respect my need to avoid infection. I do tend to avoid large social gatherings in winter and have sometimes thought of wearing a mask on planes :lol:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#7 Rocknroll Celiac

 
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Posted 06 November 2010 - 02:30 AM

I initially quit eating gluten before I knew it was a problem for me, just to see if it would help my RA because some I knew someone who ate gluten free to treat his ankylosing spondylitis. Unfortunately, I have not had a great deal of benefit with my RA and psoriasis from being gluten free.

I initially did the RA DMARDs (methotrexate, sulfasalazine with diclofenac, plaquenil) and all worked initially and then I had bad reactions to them - methotrexate damned near killed me and Plaquenil made my psoriasis so much worse, diclofenac nearly did in my kidneys :unsure: :rolleyes: ). Each time I quit a medication it would take the RA a couple of months to return, but it always came back worse. I tried leflunomide (for one week - am sure it contained gluten). None of the creams, ointments, lotions or potions do anything for my psoriasis. I have had it on both heels for three solid years (very painful) and just recently noticed some improvement. Two and a half years ago I gave in and started taking Humira - what a godsend that is for me. That has cleared my psoriasis except for my heels, and I have had no RA flares since I have been on it :) I was concerned (and still am) about the general immunosuppressant aspect of it, but I have actually had very little illness while I have been on it, compared to previously. I have had a coughing flu followed by acute bronchitis, but none of the colds and follow-on bacterial infections I normally would get. It was explained to me that taking this medication would not make it more likely for me to catch anything, but would make it harder for me to fight things off (like H1N1 :huh: I presume). It is recommended that you stop the shots when you are fighting infection. Anyway, I have not been catching colds (although I have a sister arriving to stay tomorrow who is currently staying with another sister who has developed a cold, so that will be a good challenge).

I recently wondered if three years gluten-free would have had any effect on my RA and psoriasis, so quit the Humira for a two-month trial. After two months my psoriasis is coming roaring back again, and I don't think I am going to wait for the crippling effects of the arthritis because the only pain med I can take is Tylenol and while it dulls the pain a little it doesn't do a lot. So I'm back to my Humira shots again. I have been avoiding our local bridge club where I used to pick up most of my infections because people do insist on coming when they are sick and spreading the joy :( This is a shame, but I still do social bridge where my friends respect my need to avoid infection. I do tend to avoid large social gatherings in winter and have sometimes thought of wearing a mask on planes :lol:



Himira, huh? That sounds interesting. All I really want is for my hands to return back to normal. I'm going to check it out, but how expensive is it? And how bad is/was your arthritis?
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#8 mushroom

 
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Posted 06 November 2010 - 11:38 AM

My arthritis would flare for months at a time, and then go into semi-remission, which is where I was when I actually started the Humira. He prescribed it on the basis of my psoriasis at that time and based on reports from my NZ rheumy. In the midst of a flare my fingers and toes swell horribly and are so stiff and painful, wrists, ebows, shoulders, neck, hips. The major problem is that I can take nothing for the pain, as I mentioned, except for Tylenol (six per day max. - daren't do any more because of my kidney damage). So I would take them during the day to relieve that cringing electrical pain, but that meant I couldn't sleep at night from the pain. I can use Tramadol which I tried taking at night, but interestingly that only intensified the pain :blink: . I would be unable to hold a coffee cup, touch my index finger to my thumb even. I still have swollen index and middle fingers and several sausage toes, but at least no permanent joint damage (now that I have worn off all the deposits on my elbow) - the important thing is to keep your joints moving and straightening out your fingers to keep the tendons long.

I actually fly to the US from New Zealand every year to get the Humira on my medicare (and supplemental) insurance because I have no private insurance here and the govt. funding does not provide it for me - your disease has to be so severe here to qualify to receive it that you will probably not receive much benefit from it when you do get it :unsure:
So I can get it on my normal prescription copayments. If I self-funded in New Zealand it would cost me US$20,000/yr. The one thing you have to watch (and be monitored for) is liver damage :o So far my readings are fine. Humira has literally given me my life back, I can hold my bridge cards again :D and cook again - for a long while Dh did all the cooking. It used to take me a couple of hours to get through showering and dressing in the mornings, longer if I washed my hair.:rolleyes: I would sit in a recliner all day :(
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#9 takeiteasy

 
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Posted 08 November 2010 - 12:31 PM

So I was diagnosed with Celiac's Disease when I was 17. The events leading up to my diagnosis were miserable. I'd grown up thinking a stomach ache after eating a meal was normal. My aunt would tell me I eat too fast, or my mom would say I just wanted to get out of chores. By my junior year of high school, the pain was unbearable. Initially thinking I had the stomach flu, I stayed home, drank OJ and choked down lightly buttered english muffins. I curled up in pain. I went to the doctor time and time again and run through the gamut of testing. I spent hours at the Children's Hospital getting ultra sounds, nuclear imaging, and upper GI's. There was a three week wait to see the gastrointerologist, but my father pleaded with the nurse to get me in sooner as I lie curled up in the fetal position sobbing from the pain. I was seen the next morning and finally a biopsy delivered my fate: I am a Celiac.

I wasn't traditional of a Celiac. I wasn't thin and wasting. I didn't have the leaky bowel. I was avg size, avg build, avg kid... but with stomach aches. After seeing a nutritionist, my mom and I spent 3 hours in the grocery store reading labels. This was almost 13 years ago, when almost nothing was labeled gluten-free, and if it was, you probably didn't want to eat it. The options were slim. And as a teenager, I was already a picky eater. I liked three things: pasta, bread and pasta. Now I had nothing...

My mom and I worked hard to adjust to my new diet. By the time I left for college I was used to the constraints of living gluten-free and adapted accordingly. THen my junior year, I went to China to be an English teacher. I was in the far NW province of XinJiang, a remote region by Chinese standards. I did as best as I could, but my language skills didn't allow me to read the ingredients well enough to know what I was eating. The chef at my school didn't know the meaning of gluten-free. I tried my best, but then I noticed that when I was eating gluten foods, I wasn't having the symptoms of before. So I started eating more. I stopped being cautious. I gave up my gluten-free life.

Nine years later, I've found the man of my dreams. I know he's the man I'm destined to be with for the rest of my life. He's insisted I return to my gluten-free diet and he's given up gluten too, just so he doesn't risk the cross-contamination. The naivete of youth has destroyed my health. They myths of Celiac's Disease: that I could outgrow it, that cheating wouldn't hurt, etc., plagued my life and the information I had about the disease. I've become more informed. I've reeducated myself. My best friend and true love is my biggest supporter. And I'm here to reclaim my health and my life.

Wish me luck.


Good Luck! It is the man in my life too, that convinced me to go see a "real" doctor. Before he came in to my life I had seen countless GIs and skin specialists and not one was able to diagnose me. They all told me "it's in your head, get a grip on your life, there is nothing wrong with you" It was the "real" doctor ($900 later) that diagnosed me. Again, lots of luck and may gluten free, rid you of all symptoms.
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