Hope for a Recently Diagnosed Celiac

Celiac.com 10/12/2009 - It has been 9 months since my celiac diagnosis. It seems hard for me to believe that until January 23, 2009 I had never even heard of celiac disease. I have made up for lost time in the past few months. Hopefully, my story will help others who are newly diagnosed with celiac disease to hang on to hope and be encouraged that things are going to get better – much better as they move into a gluten free lifestyle. 

In 1971 I had a panic attack. I have never been the same since that day. I won’t go into the details of it because most people know what a panic attack is like.  So I had a complete physical which included blood panels for the first time. When I got the results I found out I had an extremely elevated alkaline phosphatase level (400), normal is 80-130. My first thought was, “What the heck is alkaline phosphatase?”  The doctor was alarmed.  He ran more tests and suggested a liver biopsy.  He thought I might have liver cancer. No liver disease was found. From that panic attack until my celiac diagnosis I was always anxious about my liver. I also fought the fear of more panic attacks.   Nothing was ever conclusive. It just hung out there for over 35 years.  Every time I changed doctors and had my blood tested I went through the same series of tests and concerns. Nothing definitive was ever diagnosed.  Finally, my doctor told me my elevated counts were “normal for me.”

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Fast forward to the year 2003.  Without any reason I lost 20 lbs. over an 8 week period. I thought it was kind of cool to be “skinny”. I had always being kind of “doughy.” When I had a physical I found my alk-phos was now over 400.  I was anemic and more fatigued than ever.  My doctor wanted me to have a colonoscopy and an endoscopy. He said he was more worried about the anemia than the high alkaline phosphate. I had a colonoscopy, but refused the endoscopy on grounds that I couldn’t bear the thought of having a tube put down my esophagus.  What a mistake!  I could have gotten this diagnosis 6 years earlier.  The colonoscopy revealed no disease. When I did finally have an endoscopy in 2009 I was totally sedated and the test took about 4 minutes. It was the easiest test I’ve ever had.  My doctor thought I was depressed and put me on anti-depressants.  After adjusting to the meds I think I felt a little better, but deep down I knew something major was going on.  I figured if I were the President I would be sent to the Mayo Clinic for a couple of weeks and they would find out what was plaguing me. I thought my problem could be found only by the best doctors in the world and it would be at great expense – more than I could afford, so I decided to just live the best I could.

Before my diagnosis I was not absorbing many, if any, nutrients.  At 6’2” I was a gaunt 156 lbs.  I had rapid heart beat, shortness of breath, fatigue, anemia, terrible muscle cramps all the intestinal issues known to man. Numerous blood counts were way off. The 98 lb. weakling at the beach could have kicked sand in my face all day long. My wife told me she couldn’t look at me anymore. It’s hard to look at someone who is suffering from serious malnutrition.  Everything I ate went right through me.  I didn’t think about it at the time, but as I reflect back on it I know I would have died by now if I hadn’t gotten off the gluten. Now I can see signs of celiac since childhood. I was delayed in reaching puberty until I was a junior in high school. I also had fears that we not reasonable.  There were some things going on neurologically for sure.

I began feeling better within a few days after being diagnosed and going gluten free last January.  My weight began going up, and I just knew the anemia would go away and so would the high alk-phos.  6 weeks after diagnosis (March 2009) I went in for a blood test.  I was convinced the bloodwork would show normal levels in every category. I was proud and giddy.  I couldn’t wait to get the results.  Surprise, surprise!  The blood count for anemia had not changed and the alkaline phosphatase was over 600! What the heck was going on!  At least I felt better.

I stumbled across a couple of articles on the internet about high alkaline phosphatase in celiacs and possible reasons.  Many celiacs have low calcium and vitamin D, and in some cases it causes high alk-phos.  Without getting too technical it seems that the alk-phos plays a role in bone growth and can go into overdrive when calcium and Vitamin D are extremely low. The solution for us may be in taking lots of calcium and Vitamin D supplements.  I know this is controversial, but I decided to go directly to the source of vitamin D (the Sun) for 15 minutes of sunlight each day.  I also have been taking a great gluten free calcium/magnesium supplement for the past 6 months.  Last week I went in for more bloodwork.  I know I continue to feel better all of the time, but after my last blood work I’m a little nervous about the actual results.  The nurse called me the day after the blood was drawn and told me my count for anemia is now in the low normal range and the alkaline phosphatase is 300!  It had dropped 300 points in 6 months.  I think I’m on to something.  I feel like I’m on the right track and will continue the supplements. I haven’t mentioned how low my cholesterol was in January.  The LDL was 33 and the HDL was 18.  The total cholesterol was 61. The doctor said it was the lowest cholesterol he had ever seen! Now it has gone up to a total of 140!  Something is definitely working!  I think just being gluten free for 9 months has been better than anything else, but I continue to be hopeful about the calcium and vitamin D supplements.

 I have gained 50 healthy lbs. since discovering I’m a full blown, card carrying celiac. I’m working out every other day with weights and I figure of the 50 extra lbs. about 25 of it is muscle and the rest is fat.  Oh well.  I do look better.  My wife can look at me again and I can even look at myself once in a while. I had no idea what it was like to feel normal.  Good things can be found through every struggle. Were it not for these trials I would not have found my faith and learned to trust God. I wouldn’t change that for anything. Everything happens for a reason. I do wonder what I may have done with my life had I been gluten free from birth.  I don’t spend too much time thinking about it, though, since I can do nothing to change it. I consider it miraculous that I could have been in education as a teacher and administrator for 32 years before I hit the wall in 2005.   I’m 60 years old now.  I really look forward to the future. I feel like my best years are ahead of me.