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When I speak on celiac/gluten intolerance or talk to individuals who might have gluten issues, I provide an information folder I’ve developed over the years. In it, is the 20+ REASONS TO GET TESTED FOR GLUTEN ISSUES listing shown below. (I compiled this listing from various sources. It will be a permanent feature on my website. Just click on the 20+ Reasons You Should Get Tested for Gluten Issues under the gfe tip sheets section on the sidebar to get the listing as a PDF file.) One of the frustrations with trying to make or get a diagnosis for gluten issues (from gluten sensitivity to celiac) is the fact that no two individuals will experience the same exact symptoms and no two resources (medical websites, reference books, etc.) will list the same symptoms. I had a number of symptoms on the listing over the years, but not all at the same time … which frankly just adds to one’s own confusion, as well as the doctor’s. Admittedly, in some ways, it’s like chasing a moving target. To further complicate matters, some individuals may only experience one symptom and about 40% of those diagnosed with celiac state they had no symptoms. (I believe that last figure could be highly inflated, due to individuals not recognizing symptoms as issues or symptoms being attributed to other medical conditions.) Hence, one rarely goes down a straight and narrow path with testing and diagnosis.
Beyond Celiac states that the average time a person waits to be diagnosed is 10 years. (No data is available on the time needed for diagnosis of non-celiac gluten sensitivity and gluten intolerance.) The multicenter study published in 2003 (read more here) showed that about 1 in 133 have celiac disease in the United States. That figure equates to approximately 3 million people. In comparison, 2.7 million have epilepsy. About 2.1 million have rheumatoid arthritis. Lupus affects 1.5 million people. Type 1 diabetes affects 3 million people (6% of those individuals also have celiac). Multiple sclerosis affects 400,000 Americans. The number of people with celiac in the U.S. would fill 4,400 Boeing 747 airplanes! Are you surprised that many people have celiac when you see the statistics compared to the incidence of other disease? Most are. Somehow the 1 in 133 statistic doesn’t have the same impact until it’s shown in comparison to other well-known conditions. (Read more facts and figures about celiac in this large PDF file from The University of Chicago Celiac Center.) When the study establishing the incidence rate of celiac was published, it was estimated that 97% of individuals with celiac remained undiagnosed. Today, the NFCA estimates that 95% remain undiagnosed.
While progress is being made, many can’t get a celiac diagnosis. Some choose to go on a gluten-free diet on their own after doing research and talking to others who have experienced resolution of symptoms by eating gluten free. Some see the “writing on the wall” because they have family members diagnosed with celiac who shared their same symptoms before going gluten free. Some have the good fortune to connect with a good functional medicine physician, who believes that celiac is a subset of a larger realm of gluten sensitivity and gluten intolerance. These individuals are often directed to take the gluten sensitivity test to determine if gluten is an issue for them. (I happen to be in this latter category.) Others, while suffering, may still be eating gluten because their health care professionals have told them gluten is not a problem for them and they should continue eating it.
Take a look at these symptoms/conditions associated with gluten. If you have already been diagnosed and/or gone gluten free, you may well see issues you used to have or if newly GF, ones that are improving every day. Otherwise, are these symptoms you have experienced? Gluten could be the cause. Please don’t dismiss these symptoms. For most of my life, I thought my symptoms were just unique to me; i.e., that’s the way my body was. Doctors reinforced this thinking by saying things like “Everybody’s different. Your (insert symptom here) may be normal for you.” Sometimes people say to me that they have osteoporosis, but it “runs in my family.” I maintain that it’s not osteoporosis that runs in their family, but what’s causing the osteoporosis that runs in their family. Maybe the cause is actually gluten-related. Celiac is a disease of malabsorption, which means that the folks who suffer from it are not absorbing the vitamins, minerals, and fat that their body should be. For many of the symptoms/conditions listed below, malabsorption caused by gluten issues is the cause. Check out this list and know that as extensive as it is, it’s not all inclusive. One of the most rewarding things about being a support group leader and speaker on celiac and gluten issues is seeing the transformation in people after they go gluten free. It’s quite a pleasant revelation to note all the things one doesn’t have issues with any more after being on a gluten-free diet!
Shirley
Not just GF, but GFE!
20+ REASONS TO GET TESTED FOR GLUTEN ISSUES
- A family member has been diagnosed with celiac/gluten intolerance or a disease that is associated with celiac/gluten intolerance
- Gastrointestinal issues, such as diarrhea, constipation, or alternating; IBS; abdominal pain; nausea; vomiting; stools that are smelly, large volume, and/or float; acid reflux (GERD); bloating; gas; belching/burping; etc.
- Skin issues: rashes (including blisters as in dermatitis herpetiformis), eczema, psoriasis, vitiligo, “allergies” to products that touch skin
- Diagnosis of other disease/conditions that can be related to gluten or “run in your family,” such as any form of arthritis, multiple sclerosis, fibromyalgia, diabetes, chronic fatigue syndrome, thyroid issues, or adrenal issues
- Anemia
- For women, gynecological/obstetric issues, such as premenstrual disorders, difficult menstrual periods, endometriosis, infertility, difficult pregnancies, miscarriages, stillbirths, hormone issues, and early menopause
- Neurological and psychological issues, such as depression, seizures/epilepsy, ADD/ADHD, learning disabilities, autism, tingling/numbness (neuropathy), bipolar disorder, irritability/”moodiness,” schizophrenia, “brain fog,” trance-like episodes, anxiety/panic attacks, OCD, dementia/Alzheimer’s, ataxia, restless leg syndrome
- Osteoporosis or osteopenia
- Insomnia and/or other sleep issues
- Frequent headaches (e.g., tension/sinus/migraine)
- Other organ issues: such as appendicitis; gall bladder, kidney, liver problems
- Other food allergies/issues, such as lactose intolerance
- Weight issues (underweight and can’t gain weight easily or average weight/overweight and can’t lose weight easily)
- Frequent infections/illnesses: sinus, strep throat/tonsillitis, bronchitis, ear infections, “virus”/”bug”/”flu”
- Down syndrome
- Cancer—particularly stomach, pancreatic, lymphoma
- Frequent or constant fatigue
- Canker sores/mouth ulcers
- In children: failure to thrive, developmental delays (e.g., speech, puberty), short stature, distended belly, leg aches/pain (e.g., “growing pains”), irritability
- Asthma
- Hair issues (e.g., hair falling out/thinning, bald spots/alopecia)
- Blood pressure issues (low or high)
- Dental issues (e.g., discolored teeth/enamel defects)
Note: Listing is also available in PDF here.
Jennifer says
Thanks for putting this out. This information will help diagnosed celiacs to convince family members to get tested, if some of these symptoms are present.
H.Peter says
Very informative post.
I will cut & paste the 20 reasons and send chain mail.
noble pig says
Shirley-
This is such great information for people who are possibly suffering. Sometimes it’s hard to figure out what might be wrong. This gives people something to look into. Very helpful.
Shirley says
Hey, Jennifer– 🙂 That is definitely my hope … that reading this listing will convince family members with symptoms to get tested.
Thanks very much!
Shirley
Shirley says
H.Peter–Thank you. Sharing this listing via email is a terrific idea! I hope it will be well received and that folks will seriously take a look at their own symptoms.
Thank you for commenting, but most importantly for promoting awareness!
Shirley
Shirley says
noble pig–Thanks, Cathy. 🙂 I sincerely hope the people who have symptoms/conditions shown here will pursue gluten as a possibility. With 95% of individuals with celiac still undiagnosed, this cause should be considered. Plus, as I stated above, many more individuals have gluten issues that have not progressed to celiac but still cause major health problems.
Shirley
Matt says
That’s a great idea to spread this information through email.
It may have been you who told me this, but I heard every newborn in Italy now gets tested for celiac.
Shirley says
Hi, Matt–It sure could be more valuable to someone than a semi-funny joke, huh? Yes, H.Peter, has a great idea!
I don’t know if I mentioned that info to you regarding testing of children in Italy, but it’s my understanding that all children are screened for celiac by age 6 in Italy. Per the Mayo Clinic, “celiac disease is more common in people of European descent and in people with disorders caused by a reaction of the immune system (autoimmune disorders), such as type I diabetes and rheumatoid arthritis.” And, of course, celiac disease can affect multiple members of the same family. It’s the most common hereditary autoimmune disease.
Thanks for stopping by … keep spreading the word! 🙂
Shirley
Brenda says
Wow, what a good and extensive list!
Shirley says
Thank you, Brenda. Hope you can share it with others who will find it helpful. 🙂
Shirley
RobinSue says
Shirley this is a great help! Thanks for sharing this information. I just may call my GI guy and get the ball rolling as I do have 2 of the sypmtoms-Headaches and occassional acid reflux.
Shirley says
Robin Sue–I’m so glad your find this listing helpful. Yes, one must be proactive with one’s health. Be assertive and ask for the latest celiac testing. That’s step one for sure. 🙂
Shirley
Ali (Whole Life Nutrition) says
Wow Shirley this is such a fantastic jewel of a post! I will be sure and link back to it in one of my upcoming posts. I am also going to email it to Tom right now. I think sending it out via chain emailing is a great idea also, I will make sure I add your blog link to the email.
Thanks again! -Ali 🙂
Shirley says
Ali–Thanks so very much for the positive feedback! I truly appreciate it. Please note that I’ve also added this info as a PDF file on the permanent page, with a link at the bottom of the listing on this post as well. Hopefully, that format will be easier for folks to email/share than having to do a cut and paste, etc. Thank you both for sharing the info in several ways! Yes, let’s all do what we can to spread awareness. 🙂 I think that is really the most important aspect of gluten-free blogging and reading! With friendship, great recipes, etc. not far behind … 😉
Thanks again,
Shirley
Nance says
I’m way out of the loop on all things pediatric and obstetric these days, with my “baby” turning 21 next month. Is celiac testing available to parents in the US by request if it is a concern? I also wonder if it is covered under most major health plans. My heart just aches for any child who has to go through distress if a relatively simple test can settle the question.
Shirley says
Hi, Nance–It really depends on the doctor. Sadly, I know of many cases where the doctor has refused to test for celiac in children (and adults). Numerous reasons have been cited: “I don’t think she/he has celiac,” “I think she/he will grow out of this,” “this is an expensive test to run without sufficient reason,” “celiac is rare,” and “your child’s symptoms don’t fit the profile.” Parents who have been able to get their child tested have typically had to be very assertive and insistent upon the testing. Yes, most insurance companies do pay for testing, but like most claims for insurance sufficient reasons have to be given. So that falls back to the doctor and staff again. Most insurance companies even cover the gluten sensitivity testing if submitted (a claim the individual has to submit on his own). However, the testing itself is a bit of a can of worms as we’ve discussed in comments recently. There’s the fact that traditional celiac blood testing provides many false negatives. In addition, one well-known celiac advocate told me that the blood testing is known to often be inconclusive for children under 5. There’s much more, but I won’t get into it here. Definitely a lot of children still suffer needlessly as their parents try to get them tested and try to get accurate testing. Some turn to gluten sensitivity testing when celiac testing proves negative. We’ll have a post on testing soon I hope. I actually think a flowchart might prove helpful!
Thanks for commenting, Nance. I share your feelings. I am really hoping for testing and diagnosis to greatly improve in the near future.
Shirley
Heather @ Life, Gluten Free says
I printed out a similar list from entero lab for my mother-in-law because she has diabetes and my father-in-law has psoriasis. It didn’t sink in though. I really think they should be tested but that’s not my choice of course.
Shirley says
Heather–You bring up a point that frustrates all of us time and time again—folks who fail to consider the possibility that gluten could be contributing to their symptoms/illnesses. It’s especially frustrating with family and friends you care about. Some people will come to a realization over time; others will not. Ironically, if there were commercials for a pill to fix these things, they’d probably rush to take it … but won’t consider a fix with diet. Our society has really bought into the “fix with drugs only” mentality. And, I truly believe that the whole gluten “spectrum” will finally be recognized when a drug is approved that will allow folks to eat gluten safely. We can only hope that a light bulb will go off for some folks and they will say, hey, wait a minute … I can just stop eating gluten and have the same success!
Thanks so much for your comment, Heather.
Shirley
Ali (Whole Life Nutrition) says
Have you all heard of the celiac home test? It is a blood test (yes I know) that you can do yourself and then send it in. It is cheap, $50 I think. It would only be accurate of course with those with complete villus atrophy. We were just sent one to try out, (one of the perks Tom gets – we get to try out lots of labs!) – I was thinking of sending it to my Dad.
Link: http://celiachometest.com/
glutenfreeforgood says
I’ve been out of the loop recently — glad I caught this post of yours, Shirley. Very timely and well thought-out information. Two of the most common adult presentations of celiac are osteoporosis and anemia and then people get treated for those conditions without knowing why they are occurring. Celiac is certainly a tricky disorder!
Thanks, Shirley. I’ll send people your way to check out your list!
Melissa
Shirley says
Ali–Thanks so much for sharing that info on the Biocard celiac home test! It seems it’s been used in Europe for several years and is as accurate as the Ttg blood testing. I think it’s a great option for folks. I do want to remind anyone who wants to take it that you do have to be eating gluten to get an accurate result. To be clear though, I am not encouraging anyone who is already gluten free to eat gluten. I am just stating for my readers that this test will only be worthwhile for those who are still eating gluten.
For those who have gone gluten free already, Enterolab’s gluten sensitivity test is still an option for a period after eaing gluten free. Enterolab states the following on its website: “Research has shown that these antibodies continue to be produced at lower levels for months, even 1-2 years after gluten is removed from the diet. Stool tests can continue to detect these low levels of antigliadin antibody produced in the intestine over this 1-2 year period (and longer if there is still small amounts of gluten in the diet, even hidden gluten); tests for antigliadin antibody in the blood routinely become negative after 3-6 months on a gluten-free diet.”
Thanks again for sharing this info, Ali! I can’t wait to share it with my support group, also.
Shirley
Shirley says
Melissa–Thanks for stopping by and offering the positive feedback! I also appreciate you pointing out two of the most common symptoms of celiac. One of our local gastroenterologists who is well known for his celiac expertise also cites depression as one of the most common symptoms. You’ve made an excellent point because many of our celiac members share their stories of being diagnosed with these other conditions and struggling with remedies for those. For example, one took iron for many years with no improvement (understandably) and finally a hysterectomy was performed with the belief that would solve several problems at once, including the anemia. However, her issues remained and finally a gastroenterologist decided to test for celiac. Fortunately, she got her answer. Sadly, osteoporosis and depression are not often attributed to actual medical causes. Symptoms are treated, but not much (if any) attention is given to the causes.
Thanks for spreading the word, Melissa. Sometimes it’s seeing this info enough or perhaps in a different way that makes it finally “click” !
Shirley
Heather @ Life, Gluten Free says
You are right about that, if they come out with a prescription to take so that people can eat gluten, a lot of people will do it. I don’t know why people just can’t accept that they can’t eat gluten and live their life while enjoying the foods they can. I read an article about how a company in Australia is trying to create a vaccine for celiac disease. The article talked about how “incredibly hard” it is to be gluten free. It went on to say that there is a “morbidity” aspect because those people can’t have gluten, which means that “every day is a challenge,” to avoid and substitute. I wrote the editor but never heard back. I said it was insulting to people with celiac disease who are living their life happily and eating foods they can eat. You have to appreciate what you can eat. My daughter is severely allergic to some things, and we are thankful for what she can eat. You know? It makes me wonder about people sometimes. Sorry if I’m ranting!
Shirley says
Hi Heather—I share your frustration … truly, I do. I don’t feel the GF diet is restrictive, although I admit it’s a bit of a shock at first. It is more so if one has been eating the Standard American Diet (SAD, for sure). I’ve actually found it freeing to focus on mostly “real” food that I can eat and cooking/baking vs worrying about buying packaged foods. I’d rather take the “wow, look at all the foods we can eat” approach myself and going gluten free has been a chance for me to re-examine my diet and eat better than ever before.
Along the same lines as the article you mentioned, there was one in Newsweek at the end of the year where Dr. Peter Green (Columbia University, Celiac Center) was quoted as saying children shouldn’t be “tortured unnecessarily” when the GF diet is not medically required. Read the entire article and the comments (many echo what you and I are saying) here. I actually respect Dr. Green and his work so this was an extremely unfortunate comment IMO. Ironically, he was just quoted in an article in Natural Solutions that Melanie mentioned on her blog as saying that gluten is difficult for anyone to digest. I agree, but sure seems like a disconnect, doesn’t it?
Thanks for commenting! You’re not ranting, dear. I’m totally with you. 🙂
Shirley
Diane-thewholegang says
Wow, this is awesome!!!! I’d like to share this post on my blog. I’ll give a little info and then link to this post. Great info and great advice. Now, we need to get this into the hands of every doctor.
Shirley says
Hi, Diane–Thanks so very much for the kudos! I really hope this listing will open the eyes of many, so the more it gets shared the better IMO. Doctors have to be receptive to something other than the traditional allopathic views on gluten. As I shared with you via email, a family practice doctor attended one of my presentations earlier this month and did respond to this listing and the overall information I presented. He ended up seeing himself in the stories I shared about the doctors I’d seen who were clueless about how to help me, but still kept dispensing meds and non-helpful advice (like, “It’s IBS. Learn to live with it.”). He writes a monthly column for our local newspaper and ended up writing on gluten sensitivity! So spreading awareness can make a difference. 🙂 Thank YOU for helping out!
Shirley
CoconutGal says
(Again, catching up on your blog posts!)
Shirley, what an informative post!! I will be sending many people to your blog as you so clearly explain things I sometimes can’t put into words. It is hard to convince people that something as simple as what they eat could be the cause of some major illness or painful/annoying symptoms. I love that you said this:
‘Sometimes people say to me that they have osteoporosis, but it “runs in my family.” I maintain that it’s not osteoporosis that runs in their family, but what’s causing the osteoporosis that runs in their family.’
I could not agree more!!!
We can all just spread the word and hope!
Thank you 🙂
Shirley says
Thanks so much, CoconutGal! I hope this listing will be helpful to many. Yes, spreading the word and hope … I believe we must all do our share. It’s hard to get the message across because everyone just gets treated for their symptoms and not the cause, and the treatment is always drugs. One only has to watch a few commercials these days to know that. I just read an article it the Health section of our local newspaper. One of the reporters says she has found the cause of all her problems through an endocrinologist … a Vitamin D deficiency. My radar immediately went off. Then she immediately went on to say she can’t drink milk products to get her calcium because she has IBS. Major alarms now. It’s clear that something is causing her Vitamin D deficiency and given her IBS issues, it could well be gluten.
One of my favorite quotes is from Thomas Edison: “The doctor of the future will give no medicine, but will interest her or his patients in the care of the human frame, in a proper diet, and in the cause and prevention of disease.” We still are not there yet.
Keep spreading the word, but we have to realize that folks have to be ready for the news and willing to make changes. Yet, I know it’s so hard to witness someone suffer needlessly when celiac/gluten issues and/or food intolerances could well be the answer.
Thanks so much for commenting!
Shirley
Shirley says
Hi, William–Thanks for stopping by gfe! But, special thanks for linking to my listing … if it helps even one person, I’ll be extremely happy! The more awareness the better. 🙂
Shirley
vitiligo says
Very wonderful information. I think im gonna stick around and read about 8 more of your posts. Warm regards
Shirley says
Hi–Thanks very much. Welcome to gfe! I hope you both enjoy and find what you read here helpful.
Incidentally, I took a quick look at your site. I just heard Dr. Stephen Wangen speak about pigmentation actually returning in those with vitiligo after going gluten free.
Best,
Shirley
Colin Johnson says
Hey thank you for this info it was very helpful, I’d really appreciate it if someone could answer my questions please.
So I believe I may have celiac disease or something gluten related that is causing my symptoms, I have a quite a few of the symptoms of Celiac Disease but definitely not all of them, and when the symptoms do occur their pretty severe. Could that still be considered Celiac? And what kind of doctor could I go to to get tested for Celiac or gluten sensitivity?
Thanks ahead of time for anyone that could help
Shirley says
Hi Colin–Welcome. First, it’s important to know that you don’t have to have all the symptoms or even one symptom. About 40% of those with celiac had no symptoms at all. Gastroenterologists can run the standard celiac blood panel and then will follow up with an endoscopy with biopsy of the small intestine. However, that testing has a considerable amount of false negatives (many reasons for that). It can sometimes be difficult to get your doctor to even test you, as many have preconceived, erroneous notions on what constitutes symptoms of celiac. I recommend that you complete the symptoms quiz on the NFCA site and print it out and take it to your docotr and request testing. If the testing comes up negative, don’t stop there and think that you don’t need to be concerned about gluten. There are other tests for non-celiac gluten sensitivity/gluten intolerance, but it’s typically only alternative health care providers who see those as valid or who instruct non-celiac patients who have other gluten issues to follow a gluten-free diet. Here’s an article on some of those options. I’m a big fan of Enterolab (mentioned in the article), but your traditional doctor most likely will not accept its validity. Testing for gluten issues is very much a “gray” topic vs a black and white one. 🙁
Best of luck on all,
Shirley
Colin Johnson says
Thank you so much for your informative response, I’ll look into the articles you showed me. I recently have started a gluten free diet to narrow down whats wrong with me, so if it is celiac will not eating gluten resolve my symptoms and pain? Have you heard of the Candida fungus? A lot of my symptoms also sound like an overgrowth of that in my stomach, and it could also be caused by gluten.
Shirley says
Colin–I am very happy to help. First, candida is fairly common. Many with celiac disease/gluten issues also have candida issues; I did. Second, while one can go gluten free, it’s hard to be completely gluten free during the initial period. There’s much to learn and we just can’t “get it” all at first, so most of us still get gluten during that time. And seeing results can take time. Some, like myself, actually get worse from detox type symptoms before we get better. FYI–Going gluten free can skew or invalidate the celiac testing results completely. So you might want to go ahead and get the testing now before gluten has been out of your diet for very long. Please don’t get me wrong, going gluten free on one’s own can be a viable option for many, but validation through testing and guidance from a qualified medical professional can be most helpful for keeping one on a path to optimum health. Again, best of luck to you,
Shirley