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It's Been A Real Adventure So Far.

Tutahl75

By Tutahl75
in Coping with Celiac Disease

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Tutahl75 Apprentice
Tutahl75
Posted

Well I'm glad I logged onto this site. It made it easier to sleep last night, even though I'm still a bit tired and a bit jagged this morning.

I'm new to the Celiac family. I suppose it started for me when I was eighteen or nineteen. I always had bad gas, bloating and acne but never gave it too much thought. When I went to the doctor, he told me to limit my intake of carbonated beverages (thanks for the tip).

It never really hit me untill I was 25. It started with dry and cracking scalp and progressed into stomach cramping/upset, diarrhea and hair loss. I set up a new doctor because I was in a new city. He said it was a side effect of an anitibiotic a doctor gave me for gonorhea (I was negative for stds, but he gave me it anyway - thanks again).

At that point my symptoms weren't getting any better and my stress levels were getting increasingly worse (especially when my hair was falling out so fast).

To make a long story short. My doctor first told me I was iron deficient, later he found out my liver enzymes were up. I took some time off work because I was not coping well. I went home to spend the time with family and went to specialists there. They thought I had hepatitus B (Lets toy with my emotions further, shall we). When I returned back to work, my doctor re-assured me it wasn't hepatitus, but he still had no idea. I saw a few therapists, one even suggested it was all in my head like some sort of attention divice (still intend on talking to her about her diagnosis).

It took nearly three years of being ill and an emotional reck. I still have troubles with a restfull sleep and I took a meditation course to help me calm down in moments of distress. I've been doing my best and stick to the diet as best I can. It's hard for a single guy though to find time to bake and cook. I eat simple meals right now and my weight has stabilized.

I still have nights of sleeplessness and concerns over my overall health and healthy body image. I try not to get wound up about it, but being left in the dark so long it became a habit. I'm just glad there are people out there who can relate to me because it's hard for people to understand the extent of it at times. I'm only four months into my recovery and I get very impatient at times with re-occuring symptoms. Can anyone share their experiences on the early stages of their recovery? I'd love to hear your trials and tribulations.

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livingwithceliac Newbie
livingwithceliac
Posted

I can definitely relate. Both doctors and parents gave me that tired old, "maybe its all in your head" bit. All in my head!@?!?! I wish! Eating shouldn't be too complicated with celiac. I'm constantly bbq'ing chicken and steaks, and seafood. I'd be lying if I said I didn't miss bread products; take it from me I'd take a nice steak over a loaf of bread any day :D:D Recently I even found a gluten-free bbq sauce that I prefer to other gluten containing ones. Food-wise the only thing that has really annoyed me is that I cannot goto any places that serve asian food.

CarolynM Newbie
CarolynM
Posted

My daughter's doctor insisted I probably just give her too much juice - ARRGH! Her hair fell out also :( The doc convinced me the biopsy was necessary only to find out nothing from it. He didn't think she had celiac - he took only 3 samples - one from stomach, one from esophagus, one from small intestine. Also, I had discovered the connection to wheat in her diet -- they hate when you figure it out!

So we sit with no formal diagnosis but after seeing her health further deteriorate but being told she is "normal", I tried the diet -- she's gluten-free 2 months and results were almost immediate and have been phenomenal. I have a letter drafted to the so-called expert.

It is very frustrating and I feel like I am cooking the same things over and over. It is getting easier and seeing the improvement in her health makes it worthwhile. I am so glad you finally were diagnosed. As frustrating as it can be, take heart in knowing you are so much more in control of your health now.

cmom Contributor
cmom
Posted

I can relate! Before a gastroenterologist finally found my celica, I was sent to a psychiatrist, psychiatrist's assistant, and a chiropractor who specializes in strange things! :rolleyes:

cmom Contributor
cmom
Posted

OOPS! I meant celiac...sounds like I lost a Toyota!

FreyaUSA Contributor
FreyaUSA
Posted

I spent almost 14 years having every imaginable test done to see why I was constantly having stomach problems. I found some interesting facts out about myself (like, I have spider veins on my spleen... :blink: ) but no one mentioned celiacs. I found it out by accidentally going gluten-free for two weeks. Now, the doctors are like, "Aren't you glad to know?" Well, gee, YES! :rolleyes: I also got the it's in your head routine, but since I was seeing a pychiatrist at the time (for relationship issues, not for this), he told me it most definitely wasn't (yea, him!)

I know what you mean about getting frustrated, though. Just when things seem to be going well, something sneaks into my food and I'm knocked out for a couple days. I've only been on this since March. Good luck!

PS. CMOM, I nearly choked when I read the celica comments. Thanks for the laugh! :lol:

YankeeDB Contributor
YankeeDB
Posted

I too laughed out loud about the celica! Definitely would rather have a celica than celiac!

I've been tired for years, getting worse and worse. I was checked for anemia, thyroid problems, even sleep apnea. Finally they found a B12 deficiency and treated that without seeking out the underlying cause. Got the "it's all in your head" and went on Prozac which helped my mood, somewhat, but made me MORE tired. I researched b12 deficiency, pressed for the celiac disease test and voila!

I've been diagnosed since Jan. 2004. Overall I'm better with good and bad spells. I had additional food allergy testing done and do best if I avoid: dairy, yeast, soy, eggs, and a few other oddball ones like pears and cashews.

I've had trouble with both hypersomnia (before diagnosis) and insomnia (now). The insomnia is partly due to relying on caffeine to function at work. However, if i can exercise, that helps a lot!

I have every hope of feeling really, really good as time goes on. :)

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