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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com 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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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I had an awful experience with Dr, Jeffery Hyams... He is a pediatric GI doctor who is unwilling to accept the fact the there are millions of people with gluten intolerances in our world. He decided becasue I was 13- 14 I was at that age where eating disorders developed... He wouldn't take into account that everytime I put food in my mouth I was doubled over in pain or that I was an athlete who loved to be outside and play soccer. It wasn't even a doctor who cured me, it was a nutritionist. She took one look at me and said "you have the coloring of someone who would have a gluten intolerance... have you ever heard of a gluten free diet?" It had been 4 months and -16 pounds so I was ready to try anything and sure enough the pain became to subside after 4 days and was completly gone within 2 weeks.

To say the least I blame the fact that I still don't have an appetite souly on Dr. Hyams. If he wasn't so willing to write me off with an eating disorder my intestines wouldn't be so damaged and have to take so long to heal. I want to start going to a doctor who would understand considering my last experience with GI doctors was so terrible, but I'm not sure who....

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I totally disagree, Dr. Jeffrey Hyams and his team at Connecticut Children's Medical Center are fantastic!We are very grateful that he was put in our path and I think I mentioned Dr Hyams by name in a post ~1 year ago. Based on our experience I would recommend Dr Hyams to family and friends of ours.

In July of 2011 my teenage daughter (15 at that time) was having stomach problems, nothing earth shattering, diarrhea and cramping but the fact that she mentioned it to me and her father made us take notice. Her pediatrician ordered blood, urine and stool tests. The blood test came back positive for celiac's disease and also indicated she was having absorbtion problems. The stool sample had both white and red blood cells in it. Her pediatrician referred us to Dr Hyams. The very next day Dr Hyams contacted us after reviewing our daughter's test results. He retested her stool and got the same results so he scheduled an endoscopy and colonoscopy for the next week. Biopsies indicated she has Celiac's and IBD. The first meeting we had after the biopsies was a 3 hour affair and ee met with Dr Hyams and my daughter was introduced to her team which included a nutritionist, a nurse and a coordinator who all work directly with Dr Hyams. They have all been great.

Unfortunately, because of insurance changes, we had to switch Drs. We are lucky because my daughter's new Dr is working out very well. The new Dr is at Yale New Haven Hospital. After she went through all the records and test results she said that she felt that Dr Hyams had made a vert good diagnosis that she agreed with. She also pointed out that because she has both Celiac's and IBD (which has been indentified specifically to be Ulcerative Colitis) it is not an easy or common case and that she has been in good hands.

I am sorry that you had a negative experience but our experience has reflected what kind, caring and knowledgable pediatric gi Dr Jeffrey Hyams is!

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With due respect for your feelings about Dr. Hyams, maitrimama, your experience was a little different from the OP's in that Dr. Hyams was presented with a diagnosis by blood test of celiac. He was not asked by you to make the decision as to whether or not to test for celiac disease. This tends to be the critical factor for celiacs -- finding someone who is willing to test for it. Many of us have not been tested and have self-diagnosed because doctors cast us aside for whatever reason.

You should be very grateful to your daughter's pediatrician. :)

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Dr Hyams was not presented with a diagnosis, he was presented with preliminary test results and then ordered additional tests. No diagnosis was made until all the test results were in and analyzed. It turned out to be a complicated diagnosis and I appreciate his concervative approach.

Though my experience with Dr Hyams may be coming from a different side of the equation,I am an educated, well informed person and I won't sit back and watch Dr Hyams be bashed without giving my opinion.

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Many doctors now will diagnose on the basis of symptoms, positive blood tests and response to the diet. However, I did misspeak when I said "diagnosed". He was presented with positive blood tests for celiac, and merely ordered the biopsy to confirm the diagnosis.

Without "bashing" Dr. Hyams, I think he should re-evaluate his stance that there is no such thing as non-celiac gluten intolerance. There are millions of people in the world who would strongly disagree with him, including now Dr. Alessio Fasano.

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    • Thank you all for your great suggestions! Will take all of it on board
    • Dairy is a major issue with celiac, due to the enzymes to break it down being produced by the villi tips being mostly destroyed or damaged first. Eliminating for a few months may be critical. I might suggest digestive enzymes, I am taking Jarrow Enzymes at 2x the dose, Jarrow Bromelain, and sometimes some extra papaya enzymes. I have issues breaking down the large amounts of foods I consume otherwise (I am trying to body build bulk). I also would look at some protein powders if I was you. Vegan protein powders are easy to digest most times an can be great. Pumpkin Seed protein is the easiest on the stomach, being a balanced PH, high in zinc, iron, magnesium, it is very good for recovery and putting on weight in addition to others. Might also consider blends, try not to get anything with too much gums in it. I like NutraKey V-Pro and MRM Veggie Elite. I also buy a whole list of others. On her food, veggies, and meats should be cooked to almost mush, try using a crockpot and stewing them. This will make them easier to digest and break down.
      Is she having any other issues? Like Bowl issues? I find I can loose hunger if I back up, and I have to take magnesium like crazy and eat a whole lot of fiber to keep it moving. Take it you already read the newbie 101 section about getting all new cookware, and deconing the house? Bit of a extra tip I swear by to everyone, Freezer Paper/Butcher Paper. Makes a nice clean prep surface and easy clean up.
    • Hi Kirsty, Gluten messes me up in a lot of different ways, some of which I recognise in your first list. You can find a massive list of symptoms associated with celiac here: https://glutenfreeworks.com/gluten-disorders/symptom-guide/ and it may be that some of your other symptoms can be found there. It's also worth searching this forum as it's been going for a long time, in internet years at least.  It certainly messed with my blood sugar and like you I'd take tests which didn't reach the extreme values, but that didn't stop the symptoms. The only way I realised this was when I removed it from my diet, for other reasons and found that a load of different other symptoms also resolved.  After this happened I then went back on to gluten for a test, a gluten challenge. My symptoms came back, but my blood test and endoscopy were negative for celiac. My consultant told me to avoid gluten for life.  In your case you need to decide whether to push for more celiac testing or not. If not, please consider fully excluding gluten. My own experience is that it's not something that you can have a little of and get a health benefit, you are still engaging your auto immune system. Obviously if you're experiencing extreme symptoms when you remove it you should do it in consultation with your doctor, but maybe if you could just get through those difficult first few days you may experience relief from some of your symptoms? Best of luck matt    
    • So... his gp did a genetic test - positive - and has referred him to a gi. His paed and diabetes educator have ordered the genetic test and another coeliac screen for 3 months and then they will decide if he needs to see a specialist because they're still convinced its most likely a false positive. Why test at diagnosis of diabetes if they don't believe the results anyway? Why is this disease so confusing for the medical world?  Anyway we're sticking with the gp and hopefully it won't be too long before he gets into a gi.  It seems that blood tests don't matter in any situation. If they can find any excuse to invalidate them they jump at it.  Makes me so infuriated I just laugh about how I already seem to know more. 
    • Thank you! I have been considering lactose, though I'm reluctant to remove more things from her diet. She has not had the classic lactose intolerance symptoms of diarrhea, gas, or bloating, though I know she could still have trouble with it. She's been on the medication for less than a week, so it's not the cause of her symptoms. I did not call the manufacturer but it is listed as safe on glutenfreedrugs.com (under the brand name periactin). It was prescribed by a pediatric GI who specializes in celiac. The first question my daughter had for the doctor was whether the medication is gluten-free, and she told us it was.   
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