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      • Frequently Asked Questions About Celiac Disease   09/30/2015

        This FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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    About Sasami888

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    1. Sasami888 added a topic in Celiac Disease - Post Diagnosis, Recovery/Treatment(s)   

      Misdiagnosed And Had Celiac All Along? Hi!
      Hello everyone! I am a new member, but have been lurking for a few days. I received my diagnosis about a week ago between Christmas and New Years. I am both relieved and anxious about the diagnosis. Happy to know what is making me sick, but it is a lot to take in! SO MANY QUESTIONS!!! Well, seems like I found the right place to ask those questions.

      To skip my personal story about being repetitively misdiagnosed before receiving a proper diagnosis, scroll to the end of my story for the questions. I just wanted to share my experience.


      So, here is where I want to begin. Here is my story, questions attached:

      In my experience, I have been sick since I was a small child.

      I became anorexic at age 8, not for vanity, but because I simply felt better when I didn't eat. Then I became more sick and was diagnosed with hypothyroid disease.

      I started eating 'normal' again while taking synthetic thyroid hormones and then my weight ballooned into my early teens. Then my same doctor that diagnosed me with hypothyroid disease took me off the synthetic thyroid medications when blood work returned with results showing that I no longer had hypothyroid disease.... weeiiiird.

      Then it happened again off and on, not two, not three, but four times throughout highschool. Thyroid problems came and went. I then developed cystic nodules all over my body and was put through more than one round of accutane.

      The cysts would disappear after 8 or so months on accutane, I would come off the accutane, be clear for a week or two, then... BLAM! Covered in cysts again!

      Little did I know, hypothyroidism and cysts were symptoms... it gets a little more weird.

      So, into my college years, I had a body full of scars, cysts, thyroid problems, SEVERE fatigue, inability to focus, and sudden complications with my kidneys. It soon became normal to be in pain, not remember anything/fuzzy memory, and have blood in my urine. (my grades dropped at this time - straight A's to D's and a few F's Parents were angry and didn't listen when I gave them my reasoning.. I felt like shitaki mushroom).

      Doctors put me on kidney medications and then accutane.

      I became anorexic again. The symptoms cleared and I felt good again... for a few months (I wasn't eating after all). I mean, my skin was clear... not a single cyst OR pimple! I could breathe better AND I had energy. I was even making straight A's again!!!

      Then it occured to me that I may have food allergies.

      So I saw an allergist and was then diagnosed with food allergies: dairy, wheat, ginger, and sweet potato. (And THEN my mom decided to tell me that she was hospitalized while pregnant with me for consuming dairy!) angry face, fist shake.

      I began eating well. The pain would sometimes happen and the cysts returned... but they no longer covered my entire body. I would have maybe eight cysts on my back and 5 or 6 on my face at a time. I wasn't complaining... it was the best I had felt in years. Even if I did have a few off days! My parents still believe my drop in grades having nother to do with my health... I'm serious... I study hard and never party...blah blah blah. I'll save THAT (parental reaction and grades) for another topic.

      Then I had a few episodes... so severe... I ended up in the ER several times this past semester. (grades: managed to do okay, but nothing spectacular). The doctors told me that I not only had debri in my kidneys, but I may be developing more severe problems as well.... possibly might develop kidney disease. I was placed at high risk. :(

      I got to where I started drinking a gallon of water a day, no tea, no soda, no coffee, etc.

      I felt better as a result but still had severe pain. I would have a hard time walking between classes and even doubled over on the sidewalk a few times because it felt as though someone had shoved a few knives into my gut and they were twisting them in many different directions at once.

      I saw the school doctor and disability office and they e-mailed my teachers as a result. I was allowed a few extra minutes to get to my classes. Which, believe me, I needed! There is a strict attendence policy at my university where 3 tardies/lates = 1 absence and 3 absences = 1 drop in a letter grade. Sometimes I would be on time, sometimes 5 minutes late, every time in pain. I just couldn't live like this anymore!

      So I went to the same doctor I had been seeing as a child over the break. She told me that she was going to have two separate blood tests done and not to eat for 24 hours before my appointment.
      I followed orders and came in. She drew blood, labeled it, and then handed me some rye bread to eat. An hour later, she drew more blood.

      Two weeks later, I came in to hear that I had low amounts of IgA and IgG antibodies in the first blood test, but in the second blood test... the amounts were HIGH.

      So, after a few more tests, the results are in. I have celiac disease. I am so RELIEVED. After a LIFETIME of health complications, I have an answer. I know I have only been gluten free for a few days (I am avoiding my allergens too), but I am looking forward to becoming healthy and having energy again!


      Here is my question for you guys!

      Before being diagnosed with celiac disease, were you diagnosed and treated for other things that were actually related to/tied to celiac disease?

      If so, what was your misdiagnosis?

      How did you feel to finally know that you had celiac disease?
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