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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 Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can 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-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is 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 Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where 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 shelly40

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  1. Great Experience - Twin Cities Minnesota

    Is this a pediatric gastro?  I live in an area of MN where there is not a pediatric gastroenterologist.  We would need to travel to the Twin Cites to see one. 
  2. I was diagnosed with celiac in December 2012 and have been very strict about my diet.  I had my one year follow-up in December.  The good news is that my Deamidated Gliadin is now within normal levels.  I was told this means I'm doing very well with my diet.    My dr. took me off the massive vitamin supplements in August hoping I would absorb them normally.  The bad news is that my vitamin D is back down to a 9 and my zinc is at a .5.     I've been referred to an endocrinologist but I can't get an appointment until the end of March. My doctor won't put me back on the vitamin Rx until I see the endocrinologinst.  My other symptoms are joint pain in hands, wrists and elbows, major fatigue, weight gain and from time to time, a bright red rash on my face and neck.    I want to be proactive when I finally get in to see the endocrinologist.  Since many of you have had disorders related to celiac, can you advise me what tests should be done?  Medical costs and deductibles being what they are, I would rather have one lab visit with all the needed tests rather than repeated visits with exorbitant charges.  I also have a photo of me from this weekend when I had a bout of the bright red rash.  Should I email this to the endocrinologist in advance of my appointment?    On another note, my gastro dr. wants me to have another endoscopy to check healing.  Again, because of cost and my deductible, I am putting it off.  I can't understand the neccessity of having this every year.  It is extremely expensive.  Any thoughts on this as well? Any info/advise is appreciated.  Thanks in advance!
  3. Hi all!   I was diagnosed with celiac in November. Since I was diagnosed, my whole family is going through the testing process.   I know I carry both genes.  My boys (9 and 11) were tested and while they also carry the genes, they don't have celiac.  So far, neither of my sisters have celiac.   One of my nephews tested postive for celiac.  I have 2 other nephews who were tested last week and we're awaiting the results.    My question is about my two boys. How often should they be retested?  My ped is not very knowlegable about celiac and will test as often as I want.   I plan to talk to my GI about it but have found very useful info here too.   What have others on this forum done?    TIA!
  4. I'm new here. I was diagnosed about 2 weeks ago. I've been trying to do research on my own, but most of what I find is written for healthcare professionals and difficult for me to understand. I feel like a complete idiot trying to understand the genetic science part of this. If someone can answer in simple terms, I would very much appreciate it One of the many tests I underwent was the genetic marker test. I was told I tested positive for both Celiac genes (DQ2/DQ2). I have 2 sisters (one who was diagnosed with Fibromyalgia 10 years ago) and 2 children (boys, ages 11 - autism spectrum and tall, but very underweight and 9 - no noticable celiac type symptoms). All of them either have just been tested (waiting on results) or will be tested shortly as my GI recommended. My questions: Knowing that I carry both genes, if their tests are now negative, what is the liklihood that any of them will "someday" develop Celiac? How much does the possiblity increase knowing I carry both genes? How often should they (especially my kids) be retested? TIA!!
  5. I have an update. My dr. just called. Another test result came in today. I have officially been diagnosed with celiac. I probably shouldn't be happy about it, because I know going completely gluten free will not be easy. However, I cannot wait to feel better. I can't wait to have some energy and not to hurt in my hands and feet all the time. The last test was: deaminated gliadin IGA - my result was 60.6 (negative is >20) IGG - my result was 89.9 (negative is >20) This test, along with the visible scalloping in my bowel, the positive TTG test and the positive genetic test make it pretty conclusive. The dr. said the biopsy being inconclusive was probably because I'm still at the begining stage of damage. I will cut out gluten immediately and see a nutritionist soon. Thank you to all who replied. This has been a frustrating ride. I'm going to go read on the gluten free forum now.
  6. Hi all! I'm new here. I've received some mixed reports from my dr. and have been trying to make sense of them. I thought I should share what I've learned and see if anyone has any additonal insight for me. History: My first symptoms were fatigue and swelling/pain/numbness in my fingers, hands, wrists, and feet. After many doctor visits with no helpful answers, I was given a vitamin D test. It was a 7 (normal range ends at 30). I was put on a hefty prescription. A year later, I fell and broke my wrist. I had another vitamin D test which again came back sevely low. I had a dexascan and found out I was losing bone density much too quickly for my 40 years. Finally, my dr. sent me to a gastroenterologist to look into the malabsorbtion. I didn't know I was having tummy trouble. I thought my bathroom routine was 'normal'. Turns out, most people don't have loose stool every day. My initail TTG IGA test came back as a weak positive. I had an endoscopy. The dr told me she could see damage and was 99% sure it would come back positive for celiac. It didn't. It was inconclusive. The villi was not damaged enough to confirm a diagnosis. My dr. ordered more tests and found I carry the celiac gene. I will list my test results below. My doctor does not want to diagnose me with celiac until I have clear results. I'm frustrated!! Does it matter for my medical record if I'm officially diagnosed with celiac???? During my research, I came accross a white paper that helped me understand. It can be found at "First, the doctor has to think of gluten intolerance as a possible explanation for your health problems. Next, the doctor has to understand that the current gold standard blood test for making the diagnosis of celiac disease requires significant intestinal damage – damage that has yet to occur in most gluten intolerant people. In cases of early gluten intolerance, the matter of its presence or absence cannot be settled without a systematic review of your medical history, a celiac genotype, and a look at other markers of a gluten-mediated illness process. These include: 1. Markers of malabsorption. Iron, protein, vitamin D, vitamin B12, magnesium and other mineral levels. 2. Markers of a leaky gut. Excessive antibody or lymphocyte responses to food antigens, signs of parasitic infection, yeast overgrowth or imbalanced bacterial populations in the gut, lactulose and mannitol levels in the urine following ingestion, and other tests soon to be available on the consumer market." ©2010 Keith Berndtson, MD 5 As I know I have malabsorbtion and excessive antibodies, I'm just going to assume I at least have gluten intolerance and start my gluten free diet. I had the Tissue Transglut, IGA/IGG ABY initially. The results were: My TTg IgA = 8 TTg IgA Reference Values Negative < 4.0 U/mL Weak Positive >= 4.0 and <=10.0 U/mL Positive > 10.0 U/mL My TTg IgG = 1.7 TTg IgG Reference Values Negative < 6.0 U/mL Weak Positive >= 6.0 and <=9.0 U/mL Positive > 9.0 U/mL I now have 2 new test results. They are: My IGA value = 251 standard range =85 - 370 Celiac associated HLA-Q Typing Celiac gene pairs present? Value = Yes So I have a weak positive TTG IGA, an inconclusive biopsy, and a positive genetic test. Do I have celiac? Should I care what the official diagnosis is?
  7. Thanks for the responses. I had the Tissue Transglut, IGA/IGG ABY initially. The results were: My TTg IgA = 8 TTg IgA Reference Values Negative < 4.0 U/mL Weak Positive >= 4.0 and <=10.0 U/mL Positive > 10.0 U/mL My TTg IgG = 1.7 TTg IgG Reference Values Negative < 6.0 U/mL Weak Positive >= 6.0 and <=9.0 U/mL Positive > 9.0 U/mL I now have 2 new test results. They are: My IGA value = 251 standard range =85 - 370 Celiac associated HLA-Q Typing Celiac gene pairs present? Value = Yes So I have a weak positive TTG IGA, an inconclusive biopsy, and a positive genetic test. I'm waiting for my dr. to tell me what this means. Do I have celiac?
  8. Hi all. I found this forum while trying to search for the meaning of my test results. If anyone has been in this situation, maybe you can help shed light on it for me. My celiac blood test was a weak positive (8). I had a colonoscopy and endoscopy last Friday. Afterward, the dr. came in and told me she found "Duodenal erosion and scalloped mucosa in the duodenum" and was 99% sure the biopsy would reveal celiac. I had my follow-up appt. today. The biopsy was inconclusive. She said the next step was genetic testing. As I have celiac in my family, chances are the genetic test will be positive and still not tell me anything. Any words of advice or wisdom? TIA!!