Discovered: CeliacSure – A Test to Diagnosis Celiac Disease at Home

This past weekend I got a chance to bond once again with everyone at my local Greater Boston celiac support group, the Healthy Villi, during our spring conference. Like many folks around the country I find that these local celiac support groups give me the chance to re-connect with like-minded people, as well as share and discover new ideas, concepts, and solutions for living the gluten-free life.

And at every one of these meetings I always take home such a wealth of knowledge & information from Dr. Daniel Leffler, the Director of Clinical Research at the Celiac Center at Beth Israel Deaconess Medical Center and Assistant Professor of Medicine at Harvard Medical School. Lucky for us at the Healthy Villi, Dr. Leffler (who is also  the co-editor of the book, “Real Life with Celiac Disease: Troubleshooting & Thriving Gluten-Free”) has become our “resident” go-to celiac expert –  always willing to help us,  give us answers, and most importantly support us.

But at this last meeting it was our time to give back… to support Dr. Leffler. The team at Beth Israel Deaconess Medical Center asked us to help with a research study. To potentially help celiacs everywhere. For once it was our chance to give back.

The research study we were asked to participate in involves having our first-degree relatives test themselves for celiac disease using a new “finger-stick” test kit. Research results of this testing will hopefully be beneficial in two ways: First, family members who tested positive for celiac disease will be assisted in arranging appropriate medical follow-up to lead to an earlier diagnosis & care of the disease; and second, this research will hopefully get these tests, which are currently approved in Canada, on the fast-track to get the final nod of approval by the USA so the medical community can more readily reach & treat more potential people with celiac disease, and allow these medical researchers the ability to conduct more efficient studies of the disease.

The test kit being used in Dr. Leffler’s test is distributed by GlutenPro and is called Biocard/CeliacSure. It is similar to the standard celiac blood test TTG used in doctor’s offices, but is super consumer-friendly. It involves using just a finger-stick and is able to be read directly by patients in less than 10-minutes right in their own homes. (Note: they can also be purchased on-line through the GlutenPro website).

My thoughts? The Biocard/CeliacSure tests will be a phenomenal help in getting more people diagnosed quickly & more efficiently with a celiac disease diagnosis. For years I have begged my Dad to go to the Doctors and get tested for celiac disease once I and other family members were diagnoses with the disease. He has every symptom in the book. But to get an old Italian guy, set in his bread-and-pasta-loving-ways to the doctor for this test is next to impossible. Begging, pleading and praying have yet to yield a trip to the doctor’s office to get the test and results of celiac disease that I suspect.

Maybe he is scared of going to the doctor? Maybe he is afraid of letting his traditional Italian bread and pasta recipes go? Maybe he is afraid of the change the disease demands? Maybe his positive diagnosis would be his way of feeling responsible for my, and other family members, celiac diagnosis?

Whatever the reason, I am going give my Dad one of these test kits so he can test himself – no doctor, no stress, no appointment needed. Then, regardless of the results, I’m going to treat him to a big delicious gluten-free Italian pasta dinner… and a great big thank you hug.

Just wondering… Your thoughts? Why won’t your relatives get diagnoses with celiac disease?

Tags: , , ,

4 Responses to “Discovered: CeliacSure – A Test to Diagnosis Celiac Disease at Home”

  1. Sunnie Says:

    My mother died of bone cancer October 22, 2010. I had her get tested for celiac. She, like myself, came back negative. I KNOW for sure I have gluten sensitivity REALLY bad. I have had to eliminate ALL wheat products from my house, which is hard when you don’t have much money and have 8 people to feed. But even a microscopic amount makes me sick. She continued to eat glutenous products because they were soft and she had no teeth, but I am VERY sure she had the gluten intolerance like me. What I want them to push for is the more sensitive tests, that don’t just test for celiac, but gluten intolerance or sensitivities like me and my 4 year old daughter. She tested negative too, but she had headaches, leg pains, stomach pains, and diarrhea. ALL stopped after going gluten free. So I think it is a good start, but they are not there yet. They estimate that 3 million people have celiac, but over 18 million are gluten sensitive or intolerant. They really need to focus on this group also. It is leaving a HUGE group out of the picture. They get tested for celiac and it comes back negative so they think, “Well I can still eat gluten, the test was negative.” Where in fact they may be like me, my daughter, and 18 million other people that test negative but still have a problem.

    It is frustrating. People think you are making it up when there isn’t an official tested diagnosis. When a microscopic amount gives me terrible, almost to the point of going to the hospital migraines, diarrhea, rashes, and terrible mood swings.

    My father says to me, “you didn’t get that from me. I NEED my gluten. It helps my colon work better.” Really? My older brother who is related to my from my father not my mother, has a bad rash on his butt for years and is very overweight, exhausted all the time, and moody as all anything, I believe probably has the DH form of it. Not that he will listen to me. What the heck do I know? 4 years of research, talking with people, and dealing with it myself, NOPE I don’t know anything. Having had it for 4 years inspired my husband and I to start a gluten-free bake shop in our home in Amherst, VA. I am out talking to restaurants trying to educate them about how to prepare safe gluten free meals for their customers, and to give them a SAFE gluten free dessert option. That is something I have missed for several years now.

  2. katheryn Says:

    I have to agree with Sunni, there are so many more people that have severe symptoms than what will test positive that it can really confuse more than help. Also , after years of wondering what was wrong with my husband (and later with my son) and ridiculously huge medical bills it dosn’t make sense to turn to medical advice for help when the problem can only be solved through diet. If a person has several medical conditions and they will need a doctors help dealing with those, then they may need advice from a doctor on how those conditions may complicate each other and which medications will be safe for a person with gluten sensitivity. Otherwise why go through the ordeal, spend the money and time to get an “Official” diagnosis? If it helps an individual deal with it and they can actually find a doctor knowledgable enough then , good. For our family it is already obvious what we need to do. The food is really good but really expensive and the overall economy is so bad how could we afford to pay for all six of us to get tested? This is in no way to discourage others from testing. I am simply stating some reasons why people don’t test.

  3. Lisa Says:

    I was priviately diagnosised by a personal friend who is an internal medicine doctor. He had never diagnosised this before me. He did this by observation of my symptoms, not a medical test. I began by just elemimating gluten from my diet. I was almost imediately relieved of many of my symptoms. As time passed and i felt better, other symptoms that I had disappeared. My life has been changed dramatically, which i am sure is a common comment from new converts. I cannot understand why someone wouldnt want to be diagnosed, but , yet, this is often the case. I am convinced that the disease itself with the frustration of symptoms that seem to be unrelated is the cause of this reluctance to be tested. Still, I am the only member of my family who is gluten free. Others in my family are obliously to me, gluten intollerant, at least. Some have been to doctors for years for a variety of symptoms which include all of my symptoms. My mother was tested and as I fully expected, negative. Yet she has many of the symptoms that I had. This new test will convince some, that they don’t have to eat glluten free. To Others it will be a savior.

  4. Cynthia Says:

    I wish this test was availabe years ago. My doctor did not test me for Celiac, but kept trying all types of medication for irritable bowl and heartburn, etc… I finally was so tired of going to the doctor for the pain, bloating and major rashes around the torso, I decided to do an elimination diet to find what was making me so sick.

    After finding that even the smallest amounts of wheat and gluten were causing me severe pain and bloating, my doctor said that she thought I had Celiac.

    I think the test will help others. If you don’t take a blood test to identify the problem, people think you made up the disorder.

Leave a Reply

Be Free For Me Blog is proudly powered by WordPress
Entries (RSS) and Comments (RSS).