Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

  • Announcements

    • 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


  • Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About Travis_Hiland

  • Rank
    New Community Member

Contact Methods

  • Website URL
  • ICQ 0

Profile Information

  • Gender Male
  1. Many posts refer to dealing with the frustration at how uninformed the medical community is to Celiac Disease, gluten-intolerance, and malabsorbtion issues. I thought I would post just one of my experiences with the issue. Nine months ago, my wife was diagnosed with Celiac Sprue. Needless to say, this long overdue diagnosis (12yrs) finally provided the missing link to many chronic symptoms, including extremely severe iron-deficiency anemia, which countless inept physicians either failed to address or chose to ignore, commonly and obsurdly attributing her "severe" and chronic anemia to her normal menstrual cycles, usually with a single swift stroke of their magical diagnostic wands! Sorry to digress... Once her Celiac related malabsorbtion condition was diagnosed by our thoughtful and tenacious Nurse Practitioner, IV Iron Therapy was prescribed to help my wife on the road to recovery from years of iron-deficiency. However, due to critical mistakes made by the hospital pharmacy and the nurse on duty in the infusion lab, my wife nearly lost her life. Iron with Dextran base was prescribed, which is the only iron-base formula that requires a test dose on 1st exposure due to the risk of anaphylactic shock and systemic failure. The test dose was supposed to be 25mg DILUTED in 50-100 mL of NS and infused (DRIPPED) over 15-20 minutes. The test dose given my wife was NOT diluted and was injected directly into my wife's IV site, and therefore directly into the bloodstream. In the meantime, the remaining full dose in raw, undiluted form was being drawn up for injection into IV site. All contrary to my understanding of the intended prescription! I told the nurses to STOP, DO NOT administer anything else until I made confirmations, then I was immediately on the phone to doctor’s office. Within seconds of receiving the test dose my wife began to experience an escalation of frightening symptoms: First, an immediate sharp pin-prick itching all over her body, then fierce abdominal cramps, followed by a severe tightening of her chest with respiratory distress, before she finally went unconscious. All this transpired within just a few minutes of injection, all without the recommended anaphylaxis management kit on hand in the infusion lab. My wife was rushed to the ER, where she thankfully regained consciousness and was further stabilized. Two weeks later, we tried again, this time changing the iron formula to a “gluconate-base” (Brand name: Ferrlecit). This second dose was diluted and infused over 5 hours/day for 8 days WITHOUT incident. PLEASE, remember that credentials are NOT licenses for omniscience. DO NOT take your doctor or hospital or pharmacy at face value. Please require them to check and double check the prescription and its administration. PLEASE DO NOT be intimidated by your doctors and nurses, ASK QUESTIONS until you are comfortable and satisfied with the answers and DO NOT allow your practitioner to EVER dismiss your concerns. Travis Hiland
  2. I would like to re-affirm any motion carried forward on this forum that Celiac is not so rare afterall. I believe most Celiacs can attest to the lack of understanding and underrecognition of Celiac Sprue in the U.S. medical community. My wife was finally, officially diagnosed nine months ago, after the 12 years of symptoms, the severest of which manifesting during the final 6 years before diagnosis. Research shows that Celiac is probably the most underdiagnosed condition in the U.S and affects more people than Crohn's disease, cystic fibrosis, multiple sclerosis, and Parkinson's disease combined. Yet 97 percent of the people with celiac go undiagnosed. Incidently, outside the U.S., Celiac disease is recognized as one of the most common genetic conditions in the world! In 2004 the National Institute of Health Consensus Conference on Celiac Disease validated a study conducted by the University of Maryland's Center for Celiac Research (CFCR). They concluded that 1 out of 133 people in the U.S. (3,000,000 people) are at risk for celiac disease. Also very revealing, is the associative risk amongst immediate family members. Celiac disease is known to occur in 5-15 % of children and siblings of those with the disease. The results of one study indicate that one out of 22 first-degree relatives of a celiac have the disease as well. While other studies show that immediate family members have up to 30% chance of carrying the genetic markers for celiac. In 70% of identical twins, both twins have the disease. It is recommended therefore that both first and second degree relatives of a celiac be tested as well. And finally, since Celiac Disease is an autoimmune disease, it is suggested that people living with other autoimmune disorders, like Diabetes, Addison's disease, Rheumatoid arthritis, Lupus, MS, Grave's disease, and Hashimoto's thyroiditis, should be tested as well. It behooves anyone at all affected by Celiac, including family members, to become overnight spokespeople for the disorder. The medical community at large in this country are grossly misinformed and underinformed about the symptoms, the risk factors, the genetic predispositions, and ultimately how easy it is look for markers in a simple blood test. Learn as much as you can about the disease here: and, and share your story with as many as will listen. You may be able to inspire professionals and friends alike, and shorten someone's time to diagnosis and healing, which is currently averaging about 11 years! Imagine what is must be like to have to wait 11 years before you hear that you are not crazy afterall, you really were sick, but no one understood. For my wife, it was 12 years, and symptoms had to escalate to life threatening levels before diagnosis was ultimately reached. Travis Hiland
  3. As discussed in other posts, Celiac Disease is probably the most underdiagnosed and misdiagnosed conditions in the U.S. Outside the U.S., especially Europe are much more advanced in their understanding and earlier diagnosis of the disease. In fact, physicians outside the U.S. commonaly screen chidlren every five years as a matter practice. They know that Celiac is one of the most common genetic conditions in the world. Celiac is a malabsorbtion condition, or a disease that prevents the body from absorbing vital and basic nutrients, i.e., proteins, carbohydrates, fats, vitamins, minerals, and in some cases, water and bile salts. If Celiac disease is left untreated, damage to the small bowel may be chronic and life-threatening, leading to associated disorders, both nutritional and immune-related, and an increased risk of intestinal lymphomas and other GI malignancies. One of the basic nutrients pre-diagnosed Celiacs are not absorbing is calcium and Vitamin D and other nutrients required to maintain a strong enamel and strong bones. It is therefore common for Celiacs to have dental problems. My wife's dental problems were a source of great pain and frustration to her, especially because she is obsessive about her oral hygiene. She brushes her teeth and flosses religiously, yet she made twice the trips to the dentist than thre rest of the family combined. The dentists could only surmize that her teeth were "soft", an unfortunate genetic anomoly that she would have to live with. Once again, if the dentists had only been aware of the very common celiac symptom of weak or "soft" teeth, they could helped lead my wife to an earlier diagnosis, and saved not only future dental bills, but countless amounts of emotional and physicial fatigue and pain as a result of living with the pre-diagnosed condition. So, here is another call to share information with your dentist about how Celiac is a very common cause of dental problems, and should be shared with their patients as a possible condition. It is so very easy to have their MD order a blood test to screen for the specific Antibodies related to the disease. Peace of mind can come even by ruling out the possibility.
  4. What Would You Do?

    I second all those who think this "professional" is a poor excuse for a doctor. I have absolutely no respect for the medical profession in general, but do withhold and then freely give my admiration and love for those select few who practice the fine of art of giving a damn. In fact, the majority of docs I have dealt with were down right insulting in their own magnificence. It is more than unfortunate that physicians are released into the marketplace with more ego than experience. Before my wife was "officially" diagnosed with Celiac in November 2007, she spent many years being told nothing was wrong with her, and what's more infuriating, when my wife finally suggested celiac to the many specialists she was referred to, based on her own personal study and diagnosis no less, at least 4 physicians outright dismissed her suggestions as nonsense! ...despite the more than OBVIOUS list of growing and GLARING symptoms, which easily presented as gluten-intolerance! ...even more infuriating, they outright REFUSED to screen for Celiac! Ultimately, it is "we the people" that need to wake up, and not drop our trousers every time an M.D. says bark! We continue to perpetuate the blustery egos of these kinds of doctors, when we do not insist on being acknowledged. Thankfully, a caring nurse practioner/PA took up my wife's plight and lead the charge to get an official diagnosis, even after she herself was dismissed by the specialists she worked with. I also second all those who think it unspeakably irresponsible not to inform a patient of negative test results! I am incensed ad nauseum at the excuses people make for someone else's excuses. I affirm the notion that pre-diagnosed Celiac can be as confusing, painful, frightening as cancer. My wife "knew" in her heart for over 6 years that she must have cancer. And the emotional trauma of being told time after time that nothing was wrong with you, while you felt you were dying is pain at another level altogether. For those that poo-poo the comparison, you are have either not experienced the depth and damage of all celiac symptoms or you have forgotten. It wasn't until my wife was at near-death levels that we finally got a professional to pay attention. Obviously (and thankfully), once the Celiac diagnosis did come, although bittersweet, it was much better to deal with than cancer. But up until the final months of pre-diagnosis (a journey that took lasted 12 years), conditions were very grim, and the burden of not knowing why you were "dying" would welcomed a diagnosis of cancer. You see, at least there would be the peace of "knowing". In any case, there was no follow up appointment needed or scheduled for my wife's good practitioner to track her down by phone to report the results of the serological tests, showing all the positive markers for celiac. A biopsy was scheduled to confirm diagnosis. Again, no followup appointment was needed or scheduled, and my wife's practitioner tracked her down again on her cell phone to give her the results: She was positive for Celiac Sprue. Thank you, thank you, to all you physicians who take your oaths seriously. Shame on the rest of you who are either lost in your own self-importance, or who are so de-humanized that you don't care anyway. My wife's life was saved by a practitioner who not only had the courage to protest and refute the thoughtless opinions of inneffective specialists by insisting on running a simple blood panel, but who also knew how to use a telephone. Travis Hiland