And it would just be wrong of me not to advise you to get tested for Celiac disease if you think you have it. While I have written about my own journey in the gluten free world and have told you that I haven’t been tested, it really IS best to have the tests done to determine if you have Celiac disease or gluten intolerance BEFORE you start eating a gluten free diet. I did not do it because I have no health insurance, and my symptoms were so severe that I was ready to just feel better. By the time I realized that eating gluten free made me feel so much better, it was too late to go back. I am not interested in ingesting wheat, and getting sick from it, long enough to get an accurate test result. However, there are many many reasons that you SHOULD get tested, as documented by Linda here.
Linda has some very good arguments FOR getting tested, and I agree with a lot of them. But, I still say if you have no health insurance and can not afford to get tested, and you strongly suspect that your problems are caused by your diet, then by all means, don’t be afraid to try a dietary change. When I discussed my gluten free diet with my own doctor last year, after I had been eating gluten free for more than three years, he said “I wish more people would listen to their bodies.” He agreed with me that if eating gluten free was helping me, there was no need to test.
And I bring all this up again, because this morning I received this press release from The College of American Pathologists (with emphasis on certain phrases by me):
Gluten-free foods can be found everywhere from restaurants to grocery stores. Â Who needs to go gluten-free? Â For people diagnosed with Celiac disease, adopting a gluten-free diet is no fad. Â It is a medical treatment.
“As a physician who specializes in pathology, I know that Celiac disease is no longer rare; it strikes one in 100 people from ages two to 80,” advises David L. Booker, MD, FCAP, a board-certified pathologist and Chairman of the Pathology Department at Trinity Hospital of Augusta in Augusta, Ga. Â “If symptoms get progressively worse and are chronic, it’s wise to get tested.”
The symptoms and signs of Celiac disease can include chronic:
- Abdominal cramps
- Diarrhea
- Excess gas production
- Anemia
- Growth failure in children
- Decreased fertility in women
Early in the disease, some patients may have no symptoms at all. In fact, 88 percent don’t know that they have it. Long-term Celiac disease can lead to osteoporosis or intestinal cancer if left undiagnosed and untreated.
“As a pathologist, I diagnose diseases including cancer and Celiac disease. If you are experiencing chronic symptoms, I recommend that you get screened for Celiac disease. Â A simple blood test could confirm if you have the disease,” adds Dr. Booker. Â “Blood testing for Celiac disease is sensitive and accurate and can be further confirmed with a biopsy.”
Pathologists are physicians who examine cells, tissues, and body fluids to diagnose diseases. Â They interpret lab tests to help prevent an illness or monitor a chronic health condition. Â Pathologists are core members of the patient care team, with more than 70 percent of all decisions about diagnosis, treatment, hospital admission, and discharge resting on the pathologist’s report. Â Pathologists can explain test results to patients who are uncertain about what they mean.
“If you suspect that you have Celiac disease, contact your primary care provider to see if you need to be screened. If possible, it is best not to start a gluten-free diet until you are tested, as this change may affect your test results and make the diagnosis more difficult,” recommends Dr. Booker.
The College of American Pathologists (CAP) is a medical society serving more than 17,000 physician members and the laboratory community. It is the world’s largest association composed exclusively of board-certified pathologists and is widely considered the leader in laboratory quality assurance. The College is an advocate for high-quality and cost-effective patient care. Visit cap.org. View video at http://www.cap.org/apps/docs/media/booker_0111.wmv.
So, there you have it. many arguements FOR testing, and my lonely argument that is not exactly against testing, but more of encouraging you to eat what is right for you whether you can afford testing or not. Either way, if you suspect you have Celiac disease, the main thing is for you to determine in some way that you do, and to take action to get well by eating a healthy, balanced diet free of gluten so that you can life a happy life. Be aware of your symptoms, be aware of your own body, and be aware that Celiac disease is real, and many people suffer from it who do not know they have it.
Linda says
As the author of the non-medical article on not self-diagnosing, I think the main thing is to have the knowledge of what your options are. I had medical insurance at the time I inadvertently self-diagnosed (I went wheat-free to help support the changes in my infant son’s diet; I didn’t even know what celiac disease was at the time, I only knew he reacted to wheat). and if I *had* known I would have had the tests. I had no overt, classical symptoms myself, while I was on the diet, but I sure got them after six months away from wheat, and by then I got such intense symptoms that there was no way I’d put myself through eating enough gluten to get tested.
Just knowing that there are tests, and the many good and often unselfish reasons to have them, at least opens up options to be tested if you can be. But you’re absolutely right that the bottom line is to be healthy. No one can map the details of our reactions as well as we can from inside our own bodies, and if we don’t have health insurance but we do trust our own ability to pay attention while we try a gluten-free diet, it can be good to try — best if we can recruit the support of friends and family in our efforts, too.
Thanks for contributing to that awareness by blogging about it!
Sally in WA says
Very information post. With my dad having been a celiac, label reading was just a normal part of shopping for the family. He couldn’t even have foods with modified food starch as an ingredient because there wasn’t any way to verify what it was made from. Only modified corn starch was acceptable. I agree with you, too, Karen that if you can’t afford testing yet eating a gluten-free diet makes you feel so much better, then go for it!
Cindy Of PEI says
IT is all about feeling good. Tried a cake recipe for the second time and I’m about to ditch the recipe, still hanging in on the idea of adding it to the menu and testing recipes on friends and family, lol