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    Hope for a Recently Diagnosed Celiac


    Rick Lenger

    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. 


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    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.”

    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.


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    Maddening that you were not diagnosed many years ago. I wonder how many people do die of undiagnosed celiac disease/gluten sensitivity. It is said that diagnosis of celiac disease takes 8-11 years - that is only IF one gets diagnosed and there are many people like you and me who took a lifetime to find the diagnosis. I also wonder how my life would have been different if I had known about gluten. I am over 60 and my 6 years gluten-free have been wonderful.

     

    Have you had your vitamin D level checked to be sure it in the optimal range(40-60ng/ml)? Two great sites about D are Grassroots Health and Vitamin D Council.

     

    Wish you well on your gluten-free journey to better health. Thank you for sharing your story.

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    Thank you for sharing your story. I guess I need to get serious about this intollerance!

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    I too was close to death before I was diagnosed. I suffered many of the same symptoms as you and then some. I'm so thankful to have the diagnosis and am most happy to give up gluten. Though it is a bit of an inconvenience at times, I wouldn't go back to gluten for anything. Thank goodness there are so many great tasting substitutes.

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  • About Me

    I was diagnosed with celiac disease on January 23, 2009. Since that time my focus has been on regaining health and perhaps feeling better than I ever have in my life. I was an elementary and junior high school teacher for 18 years and a principal for 14 years prior to my early retirement at 55 years old. I felt a lack of pep and enthusiasm when I retired and went through a period of 4 years before I was finally diagnosed. I had never heard of celiac disease. What a journey this has been.

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  • Related Articles

    Melissa Blanco
    This article originally appeared in the Fall 2009 edition of Journal of Gluten Sensitivity.
    Celiac.com 12/11/2009 - I recently embarked on a quest for family-friendly restaurants that offered gluten-free selections.  I explained this vision to my husband and three children as we set the rules of our experiment: five family members to eat at five restaurants during a five week period.  The challenge - the children were to choose the restaurant, the chosen restaurant couldn’t sell Happy Meals or have a drive-thru window and the restaurant had to be a franchise rather than a local venue.  Additionally, the mom, me, and the only celiac in the family, had the option of not eating if it might compromise her small intestines.  Here is what we discovered:
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    My children chose to eat at Applebee’s on a Sunday afternoon for lunch.  The atmosphere was friendly and a plentiful kids’ menu was offered.  With over 1900 restaurants nationwide and in 15 other countries, according to the company website, it seems there is an Applebee’s almost everywhere.  Additionally, Applebee’s offers a Weight Watcher’s menu for restaurant patrons who are counting points, which led me to hope an allergy/gluten-free menu would also be provided.
    After we were seated, I perused the menu to read this statement, “To our guests with food sensitivities or allergies.  Applebee’s cannot ensure that menu items do not contain ingredients that might cause an allergic reaction.  Please consider this when ordering.”
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    Restaurant #2: Red Robin
    The next stop on our restaurant expedition was Red Robin, which also offers an extensive children’s menu.  According to the company website, there are over 430 Red Robin restaurants, in North America.  After we were seated in our booth, I asked our server if a gluten-free menu was available.  She immediately went to the kitchen and returned with a printed Wheat/Gluten Allergen menu.  Printed on the top of the menu was the statement, “Red Robin relied on our suppliers’ statements of ingredients in deciding which products did not contain certain allergens.  Suppliers may change the ingredients in their products or the way they prepare their products, so please check this list to make sure that the menu item you like still meets your dietary requirements.  Red Robin cannot guarantee that any menu item will be prepared completely free of the allergen in question.”
    Gluten-free offerings were grouped in the following categories: salads; salad dressings; burgers; chicken burgers; entrees; and available side dishes.  The Kids’ menu offered a beef patty burger, turkey patty, and chicken-on-a-stick.  It stated: “Kids may also select from any items listed on the Wheat/Gluten menu as adult items to custom design a wheat/gluten free meal for your child.  This menu is current and valid until 10/1/09.”
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    I ordered off of the Red Robin gluten-free menu and personally recommend the Crispy Chicken Tender Salad with grilled chicken rather than crispy, no garlic bread, and the honey mustard dressing.
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    It was a Friday evening and my children decided they really wanted to eat pizza for dinner.  This led us to almost break our fast food rule by ordering carryout from a pizza restaurant.  Ordering pizza is an extreme challenge for those suffering from gluten intolerance. Therefore, I had to do my research ahead of time.  I called Papa John’s, Domino’s, Papa Murphy’s and Pizza Hut to confirm that gluten-free pizza is not offered, at any of these pizza chains.  I did find a pizza franchise in my state, called Garlic Jim’s, which offers a gluten-free crust. 
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    I was informed at the restaurant that the gluten-free crust is covered with sauce in a separate area in order to avoid cross contamination although the toppings are put on in the same location where wheat-based crusts are prepared.  Different pans and utensils are used in the preparation of this gluten-free thin crust which costs three dollars more than their traditional pizzas.  The restaurant also posts a sign stating that although they do offer gluten-free pizza, they cannot guarantee the pizza will not come in contact with allergens.
    I recommend the gluten-free pepperoni pizza, and can attest that pizza has never tasted so good.
    Restaurant #4:  The Old Spaghetti Factory
    The Old Spaghetti Factory was established in 1969, and as of today, boasts 39 locations nationwide.  I was quite pleased to discover, when my children chose to eat at The Old Spaghetti Factory, that they offer gluten-free pasta.  Before being seated, I inquired at the hostess desk if a gluten-free menu was available and I was presented with a laminated copy. 
    Each entré includes complimentary salad, bread, and ice cream. Obviously, those with gluten intolerance need to give the bread a pass, but there are viable options available for the remainder of the meal.  Gluten-free salad dressings include pesto and vinaigrette—hold the croutons on the salad.  The main course is a rice pasta with the following sauce choices: marinara; meat; mushroom; mizithra cheese, and; brown butter.  Diners also have the option of adding gluten-free sausage and sliced chicken breast to their meal.  For dessert, a choice of spumoni or vanilla ice cream is offered. 
     I ordered the Manager’s Favorite pasta, which includes a combination of two sauces.  I chose gluten-free pasta topped with marinara sauce and mizithra cheese.  My dinner also included a salad with vinaigrette dressing and spumoni for dessert. 
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    Our final dining choice was the Outback Steakhouse which, according to the company’s website, is an Australian Steakhouse with over 950 locations worldwide.  I was offered a gluten-free menu that is nearly as large as the main menu.  Offerings included appetizers, steaks, chicken, seafood, salads, side dishes, and even a brownie dessert.  The entire gluten-free menu is available on the Outback Steakhouse website, www.outback.com .
    Our server was very knowledgeable of gluten intolerance. I ordered off of the gluten-free menu.  When ordering salads, it is recommended that you request that they be mixed separately to avoid cross contamination.  Overall, it was a very pleasant dining experience for my entire family, with a plentiful menu for me and an ample kids’ menu.
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    Jefferson Adams
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    blogs.lawyers.com Post by Janet Raasch

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    Robert Lanterman
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    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.