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Been Living This For Thirty Years

Tom Riggins

By Tom Riggins
in Coping with Celiac Disease

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Tom Riggins Newbie
Tom Riggins
Posted

Way back in 1980 I was exhausted and desperately begging doctors to find out what I thought was killing me. I only felt well when I didn't eat. After a week of upper and lower GI tests, x-rays, and various this and that I was discharged from the hospital with advice to seek psychiatric help for my headaches, fatigue, anxiety, mood swings, and extreme irritability. It wasn't until after I went home that I got the call with the results of the small bowel biopsy. HA! I wasn't crazy after all. I was so sick I had lost my ability to hold a job and my wife had lost her commitment to see me through it. She went back home to her family and filed for divorce.

I don't know how successful I was at being gluten free because it took me about three years to return to a normal life which seems like a long time to me. The headaches were gone, I seemed even tempered enough, and the only outbursts I had were directly associated with being glutened. No lingering depression, but I kept a feeling that I had returned from a very difficult almost battlefield experience. Eventually I stopped being allergic to practically everything that touched my body or I inhaled. I still have a low threshold for stress but I do believe that not one of my many friends ever questions my sanity. So yes, the craziness goes away and I hope it does for all of you who have had a similar journey.

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mushroom Proficient
mushroom
Posted

Way back in 1980 I was exhausted and desperately begging doctors to find out what I thought was killing me. I only felt well when I didn't eat. After a week of upper and lower GI tests, x-rays, and various this and that I was discharged from the hospital with advice to seek psychiatric help for my headaches, fatigue, anxiety, mood swings, and extreme irritability. It wasn't until after I went home that I got the call with the results of the small bowel biopsy. HA! I wasn't crazy after all. I was so sick I had lost my ability to hold a job and my wife had lost her commitment to see me through it. She went back home to her family and filed for divorce.

I don't know how successful I was at being gluten free because it took me about three years to return to a normal life which seems like a long time to me. The headaches were gone, I seemed even tempered enough, and the only outbursts I had were directly associated with being glutened. No lingering depression, but I kept a feeling that I had returned from a very difficult almost battlefield experience. Eventually I stopped being allergic to practically everything that touched my body or I inhaled. I still have a low threshold for stress but I do believe that not one of my many friends ever questions my sanity. So yes, the craziness goes away and I hope it does for all of you who have had a similar journey.

Wouldn't it be wonderful, Tom, if we could compile all the posts like yours (and there are hundreds and thousands of them) and send them to every doctor on the planet with an internet connection (as if they would read them, ha!) and let them see the suffering they have caused in this world through their ignorance.

I am so sorry about the loss of your job, and your wife, the people who did not believe in you, but so glad that you regained your self image, or some semblance of it, and have been able to move on, and that you have retained the believing friends. Thanks for posting and letting others know you can find the road back, and that it comes from diet and not the psychiatric couch where so many of us are recommended to go :rolleyes: .

Tom Riggins Newbie
Tom Riggins
Posted
  • Author

Wouldn't it be wonderful, Tom, if we could compile all the posts like yours (and there are hundreds and thousands of them) and send them to every doctor on the planet with an internet connection (as if they would read them, ha!) and let them see the suffering they have caused in this world through their ignorance.

I am so sorry about the loss of your job, and your wife, the people who did not believe in you, but so glad that you regained your self image, or some semblance of it, and have been able to move on, and that you have retained the believing friends. Thanks for posting and letting others know you can find the road back, and that it comes from diet and not the psychiatric couch where so many of us are recommended to go :rolleyes: .

Thanks for the kindness. Those events were a long time ago. I went to several doctors and specialists along the way who had no clue what was happening to me. It is a shame that ignorance of gluten intolerance is still out there in the medical profession. I'm sure in today's medical world similar Jeckyll and Hyde behavior is first treated with depression and anxiety drugs.

I labeled my situation as a neuro-toxicity problem even back then. An interesting side effect of the often opiated like state was I wrote some of the most beautiful music of my life during those years of suffering and for several years during my recovery period.

The worst curse of it was feeling like absolutely no one understood including all of my family. I have managed to be almost entirely gluten free through a largely boring diet but accidents can happen along with the occasional lapse of good judgment. In a relationship five years of gentle kindness can be wiped away by one horrible gluten induced outburst followed by a couple of days of pure anxiety. Unfortunately there is no get out of gluten hell for free card.

ravenwoodglass Mentor
ravenwoodglass
Posted

but I kept a feeling that I had returned from a very difficult almost battlefield experience.

You did have a battlefield experience, and your brain and body were the battleground.

After what we go through not only being so sick but difficulty in getting diagnosed it is surprising to me that more of us don't end up with PTSD.

It can be a long fight back to any semblance of a normal life once we have been sick for many years. I am glad you have been able to recover as well as you have. Believe me I know what it is like to lose so much of your life because of matters outside your control.

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