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Going Gluten-FreeJanuary 12, 2011

I Wish He'd Get Tested for Celiac Disease

I’ve noticed that the more I encourage (dare I say it, nag?) a certain someone to get screened for celiac disease, the more it looks like it won’t happen anytime soon.

This someone is my 30-year-old son, a kid who grew up to be a doctor and is now a surgeon practicing a specialized field of medicine in another part of the country. My son had gastrointestinal issues when he was little but I didn’t put it together back then, nor did the pediatricians we consulted throughout his childhood. Today, as I see him with the same old symptoms and look back at his childhood, it’s clear to me that getting screened for celiac disease would be a good idea for my son. Add to that the bad-health tidbits about various family members, some now dead, that have come to light--and I get worried.

Why does my son resist getting tested? Is it because it’s me, his mother, making the suggestion?

It’s just a simple blood panel, for Pete’s sake.

When I worked as a psychotherapist, I routinely recommended that patients suffering from unremitting anxiety and/or depression who also reported a history of digestive problems or anemia be tested for celiac disease. Getting correctly diagnosed and starting the gluten-free diet was a step toward their emotional recovery.

One woman with brittle type 1 diabetes, who had these emotional and medical symptoms in addition to unmanageable blood sugar levels, refused to get screened for celiac disease. (As her therapist, I believe she wasn’t ready to deal with the possibility of having to further restrict her diet.)

I have two friends with unexplained peripheral neuropathy. I have a neighbor with unremitting acid reflux. I have a friend who’s chronically anemic. And did I mention I have an adult son with ongoing GI issues?

Celiac disease affects 1 in 133 Americans, and over 95 percent of these are undiagnosed. Why won’t people get screened? It’s a simple blood panel, for Pete’s sake!

Comments (12)

I have not been medically diagnosed with celiac disease, but do follow the gluten free diet and do tell people that I am a celiac. I suffered for at least eight years with digestive issues, abdominal pain, bloating, excessive gas, headaches and all sorts of other things. My family doctor wouldn't send me for allergy testing. I had a few allergic reactions that brought me to the emergency room at the hospital, but still could not get allergy testing done. I started to eliminate different foods from my diet to figure out what was causing the reactions. Finally, with a suggestion or two from my mom, I cut out gluten. Sure enough, all my symptoms disappeared. I've been gluten free for a little over 6 months now. I've lost about 22 pounds. I have lots of energy and feel fantastic. I will not go back to eating gluten. It's not worth it. It's not always easy to be gluten free when no one around me is, but I do it. I don't make exceptions because my health and feeling good are so important to me. I'm very happy to have figured out what I'm allergic to. I'm also grateful that the lifestyle change came with another lifestyle change. I started the gluten free diet about a month before starting college. Two big changes was a lot but I'm really proud of myself for sticking to both (not dropping out of school or dropping the gluten free diet).

My mom and my sisters have some symptoms, but don't want to try eliminating gluten to see if it makes a difference. My mom knows she feels sick and bloated after eating bread, but still won't give the gluten free diet a try.

If people aren't willing to help themselves, there's only so much that can be done by others to help them.

Posted by: Andrea M | January 29, 2011 11:54 AM    Report this comment

I think it's important to remember that when one feels like utter crap all the time, it takes everything you've got just to get thru the regular daily grind. So the additional steps of scheduling the test, having the follow up appointment etc can seem like huge barriers all by themselves, nevermind the significant lifestyle changes that will potentially come. Give them a little space and grace. Offer to help somehow rather than citing more facts & figures.

Posted by: DJ | January 19, 2011 6:57 PM    Report this comment

In most cases celiac associated antibodies can be present years before symptoms ever start. Celiac disease no doubt has a genetic factor but needs triggers like gluten, other food proteins, infections etc. in order to be expressed. Testing is important.

What I'm seeing a lot on these comments is that testing is not being done because knowing if they are gluten sensitive will prompt them to make more lifestyle changes. You might consider this to them: Is it more important to make an informed decision or a blind one? In my opinion, knowing you are doing something that is bad for your health is more important than doing something that you are blind about. The test results are there to act as a reminder, not a dictator.

I did some searching around on the lab that the chiropractor commented on, Cyrex. They have some new, very interesting, gluten type testing. It says on their that that you can only get tests through your doctor, however, True Health Labs looks like they have them.

Posted by: MedHelp | January 19, 2011 1:38 PM    Report this comment

I am a 49 year old Diagnosed Celiac(through Gf diet alone) with a 16 year old son that refuses to consider the high probability that he has Celiac as well. We already know for sure that he is allergic to Dairy and possibly to Caesin, additionally he has been diagnosed with ADHD, which I believe is completely related to his food allergies. What test/tests would you suggest getting for a 16 year old? And is the Biopsy truly the only way to get exact results? This is what I am hearing. Thanks/

Posted by: sasha yunkers | January 18, 2011 7:55 PM    Report this comment

I'm 53 and was finally diagnosed two years ago with celiac disease and dermatitis herpetiformis, but I knew since about 2001. I'm sure my son has it as I can see the DH blisters on his skin that looks exactly like mine did when I was regularly breaking out. He doesn't want to get tested either. He's seen that eating without gluten is not that tough, and eats GF when he eats here and loves the food. He doesn't notice a big change in food. But I know that he's worried about the huge lifestyle change it would require. Another son lives in a college town where he can get bloodwork for GF testing for only $20! I'd love to hear a really good approach to get them to the labs. Any ideas?

Posted by: Pamela K | January 18, 2011 5:38 PM    Report this comment

As a chiropractor and board certified nutritionist I have worked with gluten sensitive and celiac patients for several years. Recently a new lab joined the ranks of premier labs doing cutting-edge gluten testing. Cyrex Labs focuses on mucosal, cellular and humoral immunology with specialized antibody arrays for complex thyroid, gluten, and other food associated autoimmunities and related neurodysregulation. They do blood serum and saliva testing. You might check out this lab for gluten screening purposes and more in-depth testing. Diana F

Posted by: Diana F | January 14, 2011 5:40 AM    Report this comment

I was diagnosed at the age of 46, 13 years ago, after only 3 months of having severe gastro-intestinal problems. I credit my Gastroenterology, who was just out of med school, with the extremely quick diagnoses. Even though the antibody blood test came back negative, my doctor continued testing for Celiac's ruling out other diseases like Lupus. He performed two tests that gave him the information necessary to definitively diagnose me with Celiac Sprue, a colonoscopy and endoscopic biopsy of my small intestine where the pathology report diagnosed the tissue with a 99.98% chance of Celiac Sprue. I keep a very strict GF diet since I found a host at church will send my gastro system into a tailspin for about 2 weeks.

Looking back from my childhood there were so many signs and symptoms of having the disease but since American doctors where not knowledgeable the clues went unanswered.. In 2008, I saw Dr. Peter Greene at the Celiac Disease Center at Colombia University Medical Center, NYC. Dr Greene was the person that found that I suffered from Intestinal Malabsorption and since birth all Vitamin D, C and Calcium that my body needed came from my bones. After over 6 months of mega doses of Vitamin D weekly (150,000 units) I finally got up to 27, which was at the bottom of the acceptable Vitamin D values (as of 2010 37 is the bottom acceptable value). At that time he told me that Celiac's affects only the small intestines but I recently saw him on the Dr. Oz show with his start patient Elizabeth Hasselbeck from The View and stated that the Celiac's doctors have changed their philosophy to Celiac's affects every organ in your body. Now that was such a surprise .

I have always been very involved in genealogy, before being diagnosed and when researching my family I found two female babies who died in the early 1900's of malabsorption malnutrition and I was very perplexed. After being diagnosed with Celiac Sprue, it made perfect sense.

I have been pleading my siblings, nieces and nephews, and my great nieces and great nephews to be tested, but have continually hit a brick wall. Sometimes I think I'm hitting it face first.. :) My family is acutely aware of Celiac's and the additional problems the disease caused me, but they still have not been tested. Due to Celiac's I am afflicted with degenerative bone, disc and joint disease, osteoarthritis, osteoporosis, and severe neuropathy, which has crippled me since my Vitamin D levels have been non-existent. Since I cannot absorb Vitamin D I also cannot absorb Vitamin C or Calcium.

Just two months ago at age 36, my nephew, started having severe abdominal pain and diarrhea for several months before telling anyone. After putting him on a GF Diet, all signs and symptoms disappeared until one day he ate pasta and it started all over again. Without any testing I'm convinced he has Celiac's but still hasn't seen a doctor to be tested.

I agree 100% with Linda C. regarding the testing for Celiac's being unreliable and inaccurate in addition to many doctors not knowing how to treat the disease. My Rheumatologist, Pain Management Specialist, Orthopedist, Dentist and Primary Care Physician are now learning more than they ever wanted to know about the disease and the affects it has on my body.

Posted by: BobG | January 13, 2011 9:35 PM    Report this comment

My PCP ordered the blood test for me on a whim, after almost 10 years of digestive issues and weight loss. I was so glad to have a diagnosis (after the confirming biopsy) I never considered living gluten free a hardship or imposition. I've put on 20 pounds in 90 days (I was down 30 pounds) and I have more energy than I've had in years. I can not understand anyone not wanting to feel better.

Posted by: Paul W | January 13, 2011 2:58 PM    Report this comment

I understand completely with the comments above. A year and a half ago, I was diagnosed with gluten sensitive (also egg and dairy). My MD was treating me for possible early stages of Alzheimers!! Needless to say, I was ecstatic (not at first though!) to find out it was something a bit easier to treat. Since that time, I have eliminated the offending foods and have been doing very well.

Now, my 25 year old daughter has similar symptoms with the addition of a bad case of Fibromyalgia. Through much coaxing and making the appointments for her, I got her to take some of the preliminary test to find out that she has several food allergies, and thyroid issues that the dr. says is often caused by gluten intolerances. She found that out at least six months ago and has not gone back to get the follow up testing to see exactly WHAT she is allergic to. In the meantime, she has little to no energy; needed to cut way back on her college schedule (she is a senior); and is functioning using the muscle relaxers her MD prescribed.

I, too, am very frustrated watching her health decline, knowing it is probably gluten related! I really think that she is afraid to take gluten out of her diet as she loved it (like I did). So what is a mother to do? I just do my best to support her emotionally ... nothing else I know to do!

Posted by: Sandy D | January 13, 2011 2:07 PM    Report this comment

I had DNA testing after I found out 16 cousins had varying forms of gluten sensitivity or celiac. My blood panels were negative; but I carry the genes for celiac. Although I still eat some gluten, going mostly gluten free and removing other allergens from my diet has made the world of difference for me. I think many people do not give nutrition the place that it should have in how it affects our health. Sometimes, it is because there does not seem to be very good testing for food allergy/sensitivities. However, once you make the changes in your diet and keep with it awhile, the results do appear in your blood work and overall health. My blood cholesterol levels have lowered and are in the correct ratios for the first time in 22 years; all of my other blood work is excellent; I have lost 40 pounds. These are results that cannot be argued with.

Posted by: Amy L | January 13, 2011 12:47 PM    Report this comment

One of my sons is also a doctor and won't even talk about being tested. I have celiac and so does one of my cousins. However, my 44 year old son, who should know better, is not interested in being tested. He also has gastric reflux and a "touchy" stomach. Says he is not ready to make the sacrifices, but he loves my food when he comes to my house, which is gluten free!!! Stubborness is rampant!!!!! Especially among doctors and grown children!!! I think he is afraid that his wife can't meet the challenge.

Posted by: Rose | January 13, 2011 11:21 AM    Report this comment

I totally understand your feelings! I am 'undiagnosed' with gluten intolerance OR celiac, and have been much healthier since going gluten free two years ago. I live overseas with poor medical care, so went gluten free, before ever learning about celiac, etc., so have never been tested. I refuse to go back on gluten, which doctors insist I do, in order to be tested. I am so sick after ingesting any gluten, so it's a real problem for me.

My daughter is 31 and has brittle type 1 diabetes, and has suffered lots of emotional/mental illness symptoms in the last several years. She, also, refuses to be tested, for the same reasons you suggested; she doesn't want to deal with any more dietary restrictions. I'm very surprised that her endocrinologists haven't suggested she be tested, as there are connections between the two.

Fortunately, I recently convinced my 30 year old daughter to be tested. We are still awaiting her results. It will be interesting to see what her results are. The other problem I have read about is that so much of the testing is still inaccurate, which further discourages people like me to persist in testing. Plus, many GI doctors in the US aren't 'keen' on all of this talk of gluten yet.

Anyone else with this same experience???

Posted by: Linda C | January 13, 2011 9:59 AM    Report this comment

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