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Have Not Felt This Good For 25 Years!
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Hi guys, I have been lurking for a few weeks. Just a quick history I'm 48, male, diagnosed and gluten-free for about 27 months. My GI doc, 7 yrs ago smirked at my symtoms and said IBS. 25 years ago and until then, previous docs said Alceritive Colitis. They thought that when I ended up in the hospital for a couple of days for major dehydration due to a baaaad bout with diariea for a good 24 When I was about 27. (ONE of the worst days of my life).

Previous to my diagnosis It was rough. Down to 142 lbs. from 155, My wifes family and friends were acutually voiceing concern of my death because I looked so sick. But I just kept saying I was fine, and kept going until I finally went to my GP and he ordered a mri. While the tech was looking at the just taken picture, she came and ask me if I was in any pain. I said no, She immediatly called my doc to get permission for one more lower shot. I guess my small intestines were so distended, they were amazed I was not in pain. Hence the diagnosies. What sucks is, 5 years previous, my GI doc did a upper GI but didn't do the simple process of grabbing the biopsy while he was there. Makeing the next 5 years some of my worst.

BUT NOW! 27 months gluten-free I'm 185 lbs. Look and feel great! Regular bm's, no pain, no gas. I can safely say I have not had 1 problem in 2 years. I was thinking I am totally cured......until I started reading this forum, especially the part about 40% increase in colon cancer risk. Also trace glutens doing damage even if no pain or symtoms.

After 25 years of all of the problem I've had, adhereing to a gluten-free diet is a breeze. you whipper snappers out there complaining about the diet, count your blessings. Well, this is whats been on my mind. And I appreciate the chance to talk a little about it. As many of us that are out there, I don't believe I have meet one personlly. Thanks.

Craig

in central FL

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Craig-

You can't change the past. All you can do now is stay gluten free. As you said the gluten free diet is a pretty darn easy way to change how you feel!! We are lucky that we dont' have to spend hundreds of dollars on a medication!!

Get regular check ups to check for things like colon cancer and such. The damage of the years is already done. There is no guarantee that you will or will not get cancer. Your odds now that you are gluten free are much less than when you were eating gluten. You just have to look forward and stay gluten free!!

Congrats on feeling better!!

-Jessica :rolleyes:

Hi guys, I have been lurking for a few weeks. Just a quick history I'm 48, male, diagnosed and gluten-free for about 27 months. My GI doc, 7 yrs ago smirked at my symtoms and said IBS. 25 years ago and until then, previous docs said Alceritive Colitis. They thought that when I ended up in the hospital for a couple of days for major dehydration due to a baaaad bout with diariea for a good 24 When I was about 27. (ONE of the worst days of my life).

Previous to my diagnosis It was rough. Down to 142 lbs. from 155, My wifes family and friends were acutually voiceing concern of my death because I looked so sick. But I just kept saying I was fine, and kept going until I finally went to my GP and he ordered a mri. While the tech was looking at the just taken picture, she came and ask me if I was in any pain. I said no, She immediatly called my doc to get permission for one more lower shot. I guess my small intestines were so distended, they were amazed I was not in pain. Hence the diagnosies. What sucks is, 5 years previous, my GI doc did a upper GI but didn't do the simple process of grabbing the biopsy while he was there. Makeing the next 5 years some of my worst.

BUT NOW! 27 months gluten-free I'm 185 lbs. Look and feel great! Regular bm's, no pain, no gas. I can safely say I have not had 1 problem in 2 years. I was thinking I am totally cured......until I started reading this forum, especially the part about 40% increase in colon cancer risk. Also trace glutens doing damage even if no pain or symtoms.

After 25 years of all of the problem I've had, adhereing to a gluten-free diet is a breeze. you whipper snappers out there complaining about the diet, count your blessings. Well, this is whats been on my mind. And I appreciate the chance to talk a little about it. As many of us that are out there, I don't believe I have meet one personlly. Thanks.

Craig

in central FL

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the longer you are gluten free, the less your risk for cancer and other complications... you can't live your life in fear of what if, just be happy that now you have a dx and now you can begin the process of healing your body. And the body is amazing in it's ability to heal.

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Hi Craig, and welcome to the forum!! I noticed on your post you mentioned being 100% cured. But as celiac goes, it's an autoimmune disorder with no cure. What you are doing is altering your diet for 100% elimination of symptoms and gluten reactions. Just like a person with type II diabetes can alter his/her diet so no more sugar is spilled into the urine and the body will act like it's cured. And as for increased risk of complications - the longer you are gluten free the increased rate of complications returns to that of the general non-celiac population. So keep up the good work in being gluten-free, watch for cross contaminations and hidden sources such as OTC and lotions and such.

Here's to healthy living!!!

Annette

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Hi Craig, and welcome to the forum!! I noticed on your post you mentioned being 100% cured. But as celiac goes, it's an autoimmune disorder with no cure. What you are doing is altering your diet for 100% elimination of symptoms and gluten reactions. Just like a person with type II diabetes can alter his/her diet so no more sugar is spilled into the urine and the body will act like it's cured. And as for increased risk of complications - the longer you are gluten free the increased rate of complications returns to that of the general non-celiac population. So keep up the good work in being gluten-free, watch for cross contaminations and hidden sources such as OTC and lotions and such.

Here's to healthy living!!!

Annette

I never thought of lotions or anything of the sort, only food. And I also thought I had more of a tolerance than others. Once cooking some noodles for the grand kid, I by instinct, tested by eating a few. I freaked out and waited for the bomb to hit.... it never did. Maybe it did affect me, but not noticably. I will do some more homework. And go back to my GI doc. for a another follow up that I have not been to in almost 2 yrs. Thanks again.

Craig

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    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
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