I always get the question “why do I need a celiac diagnosis?” This is usually because people think because non-celiac gluten sensitivity (now called non-celiac wheat sensitivity) and a celiac both eat the same diet, that they are the same condition. Why bother with all the tests if you eat the same anyways? Because celiac is some serious shit. It’s the difference between my lactose intolerance and my celiac disease. Because I know that every bite of something made with butter instead of oil can be helped by digestive enzymes and won’t really affect me that horribly. I won’t get cancer from it. I won’t become infertile from it. I won’t have GERD and gastroparesis so bad I’ll throw up on a stranger because of it. I won’t become a raging bitch because of it and turn into the Incredible Hulk. Because it’s an intolerance. It’s not an autoimmune disease.
At this point, I’ll get people writing in saying “how dare you!” Yes, I acknowledge that non-celiac gluten intolerance is a very real thing and it’s awful. Yes, we all eat the same, but how we control and take care of the issues because of it are different. I am not calling your issues fake or belittling you. It’s just a different thing.
I am a proponent of getting properly tested. I care about getting properly tested because I wasn’t at first, and they thought it was a million other things besides celiac. If I had gone with my first diagnosis I’d still be 40 pounds less and still eating gluten.
It’s incredibly important to get a formal diagnosis via an endoscopy after a blood screening test.This is currently a gold standard for diagnosis.
“But a blood test can have a false positive/false negative/equivocal results!” Yes it can! And way too many people don’t realize that they have to be eating a ton of gluten while having the blood test or else it won’t show anything. My blood tests didn’t really show anything, I had to combine with multiple endoscopies and a blood test along with symptomology to really see if I was celiac. And yes, I had to go back on eating gluten for these endoscopies and blood tests. Back on the thing that gave me rashes and made my mouth an open sore. That made me cry and act like a crazy teen going through hormonal changes. But I did it.
So what if you’re not eating gluten anymore and refuse to be tested? TOUGH COOKIES. Either go on a gluten-containing diet for 6-12 weeks and have an endoscopy or don’t. But if you don’t, there is no gold standard diagnosis without it. You doctor can put together pieces with other information, positive serology, positive genetic test (you don’t need to be eating gluten for that), symptoms while on gluten and probably give you a diagnosis, but this is only if you have a really good GI that has ruled out other things. Celiac is an imitator, you can have a myriad of other issues like Crohn’s, colitis, IBS, a million other things besides celiac. So it’s good to know if this is really it.
But most importantly, in my opinion, is what you do after the diagnosis. It’s really just a starting point once you get diagnosed. You need to have the following follow-up 1) bone density screening 2) nutritional deficiency screening 3) follow-up endoscopy to see if you are healing properly 4) follow-up for additional autoimmune disease. If you don’t have celiac, this isn’t something you need to worry about. But if you do get diagnosed with celiac, it’s important to start healing and make sure you’re healing properly with this follow-up protocol. Celiac ravages your body. Make sure you schedule proper follow-ups, and if need be – get a new doctor who cares about following up with your celiac disease. You have this disease forever, don’t forget about it the second you go on a gluten-free diet.
Tagged: celiac, celiac blood test, celiac diagnosis, celiac disease, celiac gene test, celiac genetic test
Hey Erica, great writing. I’m featuring this article for this weeks “GlutenFreeVegans.com” You have a great way with words. An excellent blogger. Thank you!
I’m not celiac or gluten-sensitive. But I have learned a lot about celiac disease through curating the digital paper. I wonder if you would be interested in a new topic. John Irvin of Gluten Free Things often gets comments from restaurants and cafes when he approaches on the benefits of offering some gluten-free options – restaurants and food business owners are confused about the fact that celiacs won’t eat in a restaurant that does not have a dedicated oven or utensils, etc. But there are SO MANY who are gluten sensitive and just consumers who don’t want the gluten in their bodies because its toxic to the intestines. So, as a thought, if you write about the difference in the way celiacs vs gluten sensitive folks consider going out to eat, I will feature the article. Just a thought. I like your writing.
Not sure where to share basic info. So I am going to Drop It Like It’s Hot right here. Papa John’s debuted its gluten-free pizza crust only to warn consumers not to eat it if they have good intolerance. WT heck
The “test” is simply too invasive and needs to be replaced with a better diagnostic. I am genetically pos and had a POS blood test and developed celiac as a result of chemo. My docs are specialists in Boston and no one thought I needed the biopsy as it was so obviously celiac. I have a biology background and know that standard of care is not always the right path for every patient. Question your docs!!!!
I’m newly diagnosed and starting the healing journey. This article is what I needed! Your blog is the kind of spot on research and writing that I aspire towards. You’re my hero, essentially. I attempted posting information on fb highlighting this very subject, the difference between celiac and NCGS and wheat allergies. I was attacked by a person who is self diagnosed and highly defensive at the slightest hint that celiac is in a camp of its own and not the same as other sensitivities. I urged her to get proper testing and diagnosis. She says it’s too costly and a GI friend told her not to waste her money, just assume you have it. I suspect there are many more people riding that fence and going under or over diagnosed. My God if there was a chance you didn’t have this, wouldn’t you want to know?! Why wish a chronic disease on yourself. And if she does have it, as you say there is life long follow up needed. This is a really important topic. Thank you for writing about this. You are right ON lady beast!
Emily, the reason why people would “want” a chronic disease is that they need an answer to the years of suffering they have been experiencing without answers!
The average age of diagnosis for celiac is 40-60. Meanwhile people are experiencing a whole host of symptoms, either GI related or not. If they are GI related, chances are they are being diagnosed with IBS and told to work on their stress. Too bad it’s the other way around, and being sick and uncared for by the doctor they are seeking help from is the cause of their stress.
This assessment from doctors leads their family and friends to try and convince them that they are making it all up. All of this dismissal before getting a formal diagnosis is maddening for folks, and it is easy to tell them that not having anything is “good news”, but in reality they DO have a chronic disease already, they just don’t know what it is.
Maybe you are not lucky to have a chronic disease, but you ARE lucky to be able to put a name to it.
My Dr ordered a gluten test on me six weeks ago and my antibodies were off the chart high for gluten sensitivity. He tells his staff to tell me to go on a gluten free diet. That’s it. When I asked more questions he brushed me off with “it’s complicated and confusing. I sadly listened to him out of fear and his avoiding discussion and got off gluten six weeks ago. The results 3 days after eliminating gluten were amazing, my energy rebounded, stomach pain and inflammation gone, joint and back pain gone. I haven’t reacted to any other foods. But I went to a gastroenterologist a few days ago and he wants to do a biopsy which requires me to add gluten back. (Yes I hate my regular Dr now and wish I could sue his arse!). I had my first bite of wheat bread this morning. Tonight I have pain in my abdomen that’s a nasty reminder of how bad it was before I eliminated gluten! I have to do this for a month for an accurate biopsy? Not sure I can or want to!! This is crazy and cruel and I’m not seeing how I can handle this pain and knowing god knows what is happening to my gut!