Jump to content
  • Sign Up
  • Join Our Community!

    Get help in our celiac / gluten-free forum.

  • Yvonne (Vonnie) Mostat, RN

    Did You Know: Should I Undertake a Gluten Challenge?

    Reviewed and edited by a celiac disease expert.

      My family physician diagnosed me as being neurotic, and then prescribed me a drug called Loxapine.

    Caption: Image: CC--Leonid Mamchenkov

    Celiac.com 02/08/2019 - I've been reading a lot about the gluten challenge, which makes my stomach curl. It is rare that someone with celiac disease will have a negative antibody test result. If your tests were negative but you continue to experience symptoms, consult your physician and undergo further medical evaluation. Don't just continue to suffer—keep exploring. You are not alone in this "Gluten Maze". That title can be attributed to me over thirty years ago, and I am still using it, particularly when answering the phone lines at our local hospital's dietitian office. I feel so sorry for the young people who phone in regarding symptoms that seem so common to me, but not to people who are new to celiac disease. Also for those who have stopped searching after consulting only with their family physician, or after only one referral to a gastroenterologist.

    If you are frequently on a gluten-free diet your physician may recommend a gluten challenge to allow antibodies to build up in your blood stream prior to screening. Recommendations as to how much gluten to eat during a challenge range from ½ slice of bread or a cracker daily for 12 weeks, to eating 3 grams of gluten daily for two weeks. A gluten challenge should only be done under direct supervision of a physician trained in celiac disease, and one who can immediately refer you to have a biopsy done if your symptoms are severe. You should never undertake a gluten challenge while pregnant. 

    Did you know that, depending on the complaints you have listed to your family physician, your family physician may, at least here in Canada, refer you to an anatomical pathologist, general pathologist, endocrinologist, gastroenterologist, or internal medicine specialist? Medical professions have become so specialized now that you have to go into your doctor with a specific list of your symptoms, and as a new celiac your doctor has to be "on the ball" with regards to what he thinks your symptoms may represent. If they send you for blood tests they could find out that your thyroid results are out of range for your age, and could prescribe medicine to treat it and send you on your way without a further referral. If you have celiac disease your thyroid may be "out of whack" as far as the numbers show, and you may also be experiencing symptoms of celiac disease, but without a list of ALL your symptoms you cannot blame your family physician for not assessing you for it. 

    To make things more complicated most people with celiac disease do not have any symptoms. Those “lucky” enough to have symptoms will hopefully get a blood screening for it, and then a referral to a gastroenterologist.

    My Doctor Experience

    When I first reported my symptoms of abdominal pain, diarrhea, and terrible sores with intractable itching all over my head, thighs, shins and upper arms, my family physician diagnosed me as being neurotic, and then prescribed me a drug called Loxapine. It was a drug given to the elderly in nursing homes to sedate them, and in many cases caused them to move their mouths in horrible ways that looked like they were mentally ill. Eventually their tongues stuck out of their mouth in a clockwork way that completed the picture with me. It could have gone on to the head movements and feet stamping and the inability to type properly because of shaking hands. This situation caused me to retire from my full time nursing job because I could not take blood pressures, or draw up medications in a syringe, so basically to me it ruined my life. 

    My Celiac Disease and Dermatitis Herpetiformis Diagnosis

    Once I was diagnosed with celiac disease and dermatitis herpetiformis, it was a great relief. There were many steps to become what I call “my new normal.” I eventually did get back to the nursing I loved, but in a totally new way. I loved writing medical articles, and I enjoyed volunteering in schools and hospitals, and regained some of my self worth lost through this experience. 

    I had never been neurotic, I may have been a perfectionist, but, particularly for women in their middle years, and often what are called the menopausal years, I was wrongly diagnosed and sent on a quest for over ten years to rid myself of tardive dyskinesia caused by prescribing the wrong drug to me, a drug called Loxapine that will forever change my life. 

    My Treatment and Recovery from Celiac Disease

    After being put on a gluten-free diet to treat my celiac disease, I recall being thrilled to even have a diagnosis, so I diligently followed the diet, carefully reading all labels at stores, asking questions whenever I was invited out, and seldom going out to restaurants, at least until some restaurants came out with gluten-free menus. 

    I came up with rules for attending restaurants or going out for meals at the home of friends, and began purchasing gluten-free items from grocery stores. It is a learning curve, and occasionally I still make mistakes, and I am still learning. Luckily there are now so many more gluten-free foods available in stores, and they no longer taste like softened cardboard, or bread-like frosted rice flour that was not fully cooked and needs toasting to even resemble bread.

    Above all, I hope you learned not to write yourself off when doctors tell you that you do not have celiac disease. There are other possibilities like gluten-sensitivity or non-celiac gluten sensitivity. May you never have to go on a challenge! 

    User Feedback

    Recommended Comments

    Thank you so much for posting this, I sincerely appreciate you sharing your powerful story.  

    I have lived with Celiac Disease my whole life and was finally diagnosed 9 years ago in my 30s.  We must learn to trust ourselves and our bodies and allow ourselves to do some deep thinking when it comes to our symptoms. I’m no doctor but I’ve never heard of ANYONE becoming malnourished or worse going gluten free.  If it makes you feel better, do it.  

    Share this comment

    Link to comment
    Share on other sites

    Join the conversation

    You are posting as a guest. If you have an account, sign in now to post with your account.
    Note: Your post will require moderator approval before it will be visible.

    Add a comment...

    ×   Pasted as rich text.   Paste as plain text instead

      Only 75 emoji are allowed.

    ×   Your link has been automatically embedded.   Display as a link instead

    ×   Your previous content has been restored.   Clear editor

    ×   You cannot paste images directly. Upload or insert images from URL.

  • About Me

    I am a freelance journalist. I am a retired registered nurse. I write regularly for the Celiac Journal of Gluten Sensitivity which publishes in the United States and British Columbia. I write under Dr. Ron Hoggan out of Victoria. I write for several secular magazines, and also five or six religious magazines, both Protestant and Catholic. Since retiring as a nurse, journalism, my second major in University, has been a life saver for me, both my poetry and articles. My husband and I recently arrived home from an all inclusive holiday to the Mayan Riviera, The Grand Sirenis Mayan. The Assistant Manager was unaware of celiac disease, but he was very interested in learning about it. I had my "Safe" and "Sorry" list translated into Spanish before we left home and several sheets of information laminated. I was so impressed at how they handled my meals I wanted to write about it. My Gluten Free Canada FREE Magazine.

  • Create New...