Think you don’t have Celiac Disease? Well think again.

“I feel better when I don’t eat gluten, but I don’t think I have Celiac Disease.”

If I had a nickel for the number of times I’ve heard this phrase – well, let’s just say that I could buy a whole lot of gluten free cupcakes.

A friend recently told me about a family member of theirs getting diagnosed with Celiac Disease. I try not to be preachy when someone tells me this, so I casually said, “Oh wow. Well did you know that Celiac is genetic? You might want to think about getting a blood test.” The response? – “Oh I can’t have Celiac Disease. I don’t have stomach aches.”

While this drives me slightly crazy, I have to remind myself that they are not being intentionally ignorant – it is simply a lack of awareness. While the words “Celiac Disease” and “gluten free” are becoming much more prevalent in today’s society, many people are resistant to the idea that they themselves could be affected by this disease. Perhaps it’s a lack of specific knowledge in the media. Perhaps all they think of when they hear the words “gluten free” are stomach cramps or hipsters with expensive muffins. Perhaps they just don’t want to know; they don’t want it to be them.

Perhaps it is because they don’t realize that there are a whole host of other symptoms that have nothing to do with stomach aches. In fact, many Celiacs don’t have any digestive issues at all. Instead they have symptoms like joint pain, nutritional deficiencies, muscle spasms, eczema, bruises, weak nails, acne, infertility, miscarriages, depression, anxiety, ADD, migraines, mood swings, gum disease, mouth sores, tooth enamel erosion, bad breath, asthma, chronic fatigue, hair loss –  the list goes on and on. Heck even having no symptom can be a symptom! But even without having outward symptoms, the body is wreaking havoc and attacking itself on the inside. That’s why this disease is so scary.

And that is why my firm stance is you cannot know you do not have Celiac Disease unless you get tested for it.

“But I don’t have a family history of Celiac,” some might say. Well, that’s what I thought before I got tested. I was the first person in my family to get diagnosed. My mom went gluten free shortly after I did, and we’ve traced various symptoms through her side of the family all the way to my great-grandmother who (at the time of her death) was suffering from gastrointestinal cancer, a complication of undiagnosed Celiac Disease.

I have to remind myself to be patient when someone makes a comment about their non-Celiac status pre-testing. They just don’t realize how common it is or that there are more than 200 potential symptoms. I cannot push them to get tested, even though I think that literally everyone should. But what I can do is write this blog post and continue to gently pass along facts and good information.

I’m going to put this out into the universe – it is my hope that someday the medical community will step up. That one day it will be standard procedure for every child to get a gene test, and those with a positive gene will be given an annual Celiac blood panel as a part of their yearly physical. Covered by insurance as preventative care. Think of the massive numbers of people who would be diagnosed! People who would no longer be living in the dark – people who would be given the tools to literally save their own lives. Will it ever happen? Who knows. But it’s a nice dream. 

Until that dream is realized let’s continue to pass along information and encourage testing. Because until the time that Celiac panels become a regular practice, we need to focus on helping one person at a time.

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14 thoughts on “Think you don’t have Celiac Disease? Well think again.

  1. Good post. My cousin is a coeliac who had no obvious symptoms other than a persistent iron deficiency that wouldn’t get improve. And constant exhaustion that was put down to being a teenager doing her final school exams. Fortunately her GP was on the ball and tested for coeliac. Yes, I’ve been tested too, thankfully don’t have it.

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  2. A very good reminder to get tested if your risks are higher. But: I don’t think the medical community need necessarily to ‘step up’ – they’re doing remarkable work in coeliac research as it is. The issue of screening for genes and coeliac testing has been debated already, but there is disagreement, and as I understand it one of the key reasons is this: we don’t know, for certain, whether asymptomatic people (or a subset of them) who might test positive for coeliac necessarily have a worse prognosis if they remain undiagnosed than if they are diagnosed and follow a GFD. For all we know, some who are ‘mildly’ coeliac might be able to get through life totally untroubled by it. We just don’t know for certain – and screening would impose a disease on some individuals who consider themselves healthy. Besides, not everyone wants to know whether they have the genetic disposition to a disease.

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    • Thank you for the comment. This is a great topic to discuss.

      First if all, I will say that more doctors are now recognizing Celiac Disease, and there is a lot of great research happening. I give them major props, but there is still a lot to improve upon. During my last visit to my primary care doctor (who is very knowledgeable about Celiac Disease) I met several students who were in their final months of med school, and they did not know the basics of Celiac. There is still a long way to go.

      The golden standard for a Celiac diagnosis is an endoscopy to see if the villi show signs of damaged. Damage to the villi can eventually cause a whole host of problems such as vitamin deficiencies and leaky gut, which could lead to very serious complications if a gluten free diet is not implemented. Though “silent Celiacs”appear to have no outward symptoms they do have internal damage, which is why being on the diet is important. If Jane Smith found out she was a silent Celiac, decided to continue eating gluten, and never experienced any medical problems such as infertility, osteoporosis, or cancer, I would say she got very lucky.

      The University of Chicago Celiac Disease Center (one of the leading centers in the U.S. for Celiac Disease) says the following:

      “The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage the intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms…Some individuals have silent celiac disease: they have intestinal damage up to full villous atrophy, but no symptoms.”

      As we talk about routine testing, it would not impose a disease upon healthy people. It would successfully diagnose many people with a life-threatening medical condition. Italy is a country that is very progressive. Every child is tested for Celiac Disease at the age of five, so it is not unheard of.

      I understand that some people do not want to know if they have a genetic predisposition for a disease. But most of the time when I hear that being said it is for a condition where an extremely premature death is very possible/likely. I’ve heard of many people not wanting to live their lives with that knowledge hanging over their heads. But for a manageable condition in which the treatment is a relatively simple lifestyle change, my opinion is that it is always better to know.

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      • I should have been clearer: I was referring to those who have healthy biopsy, are asymptomatic, but test blood positive for coeliac antibodies and HLA. Coeliac or not? No, you might say, but some think it’s not always clear cut. Long term prognosis for these people is not known. This is not my speculation: it’s what I’ve been told by Dr David Sanders, a gastroenterologist and coeliac expert from Sheffield in the UK, who I’ve interviewed a couple of times. Just for info: I think Italian screening no longer takes place. I seem to remember Fasano confirming this, but may be worth checking with the AIC. In fact, I’ll drop them a tweet and let you know!

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      • The good news is that the Celiac community and its researchers are well aware of that particular situation as well as the fact that it is difficult for many people to get a firm diagnosis. It really isn’t a cookie-cutter disease. I don’t think that genetic screening will halt all of the great research they are doing in that forefront. 🙂

        Let me know what you find out about Italy. The Celiac Disease Foundation has that screening policy listed on their website. Regardless of whether they continue to do it or not, that is my personal dream. 🙂

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      • As I promised to report back – have just had it confirmed from the Italian Coeliac Society (AIC) via Twitter that there is no national screening of children for coeliac in Italy. You can see the exchange (in Italian, but ‘view translation’) in my Twitter stream – @HealthJourno.

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  3. This is a well written post, Jessica. I’m curious what you would say to me, as someone who could possibly have celiac and is eating gluten free (although I’m still using cast iron that has cooked things with gluten as well as some wooden utensils…) but doesn’t want to go through the time, effort and expense to get an official yay or nay. Removing gluten from my diet has completely cured my chronic hip pain and joint inflammation (yay!) which is very exciting. Am I still doing myself harm by not knowing, even if I’m eating gluten free and have no intention whatsoever of going back? Is it more an issue of knowing for the sake of my kiddos?

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    • First of all, I’m so happy to hear that you are feeling so much better! That’s wonderful.

      Yours is a tricky situation because to get an accurate blood test result you would need to go back to eating gluten for several weeks. Most people who I have spoken with in that scenario have said that pain of going back to eating gluten is not worth the official diagnosis, and they plan on being 100% gluten-free for the rest of their lives, as vigilant as any Celiac would be. So if you agree with that – all the more power to you! If it makes you feel bad, cut it out forever! (except I would replace your porous cooking materials)

      However, you are right – it is important for your children because Celiac is genetic. Are your children eating gluten free, as well? The gene test can be done while on a gluten free diet, while the blood test requires a gluten-filled diet. Some people opt for the gene test because it is non-invasive and will tell you if you have the potential for developing Celiac Disease during your lifetime. The blood test is fairly simple, as well. However, let’s say Jane Smith’s blood test comes back negative for Celiac, yet she carries the gene. She could still develop Celiac at any point in her life, so she needs to repeat the test every few years. That’s why it’s important to know if a family member has it.

      I don’t know what the copays are with your particular insurance, but in my opinion I’d say it’s worth looking into getting at least the gene test for yourself or your children, especially since you saw such a large improvement on the diet.

      Hope this helps!

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      • Thanks, this does help. There is a lot to think about. I can’t imagine eating gluten for a few weeks though – I’m So uncomfortable after having just a little by accident . I’d have to go back to living on ibuprofen.

        Right now my family is a mix – 3 gluten free, 4 who eat perhaps 2-6 gluten items (a tortilla, a slice of bread or a pancake/waffle) a week. How much gluten is needed in a diet for a blood test to work?

        I do wonder though if I have a different issue because dairy and refined sugars affect me in the same way as gluten (hip and joint pain) but with a little more wiggle room. (Meaning I can eat a little without pain). I’m very glad to have figured out what causes the pain though, even if I don’t know why. It has made my life so much better, even if it makes eating out and eating with friends a lot harder.

        However, I’m not sure I can part with some of my cast iron, it came from my grandmother!

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      • The recommended time for a gluten challenge is 12 weeks before a blood test (a lot, I know) or 2 weeks before a small intestine biopsy. At least 1 serving of gluten per day. Based on what you’ve told me, if you want to have testing done yourself the gene test would probably be your best way to go. Your kids have more options. One of the best websites to pursue for detailed information is the Celiac Center at the University of Chicago. They are one of the leading organizations in the country for Celiac research.
        http://www.cureceliacdisease.org

        As for dairy and refined sugar, it is very common to have multiple food intolerances when you are already dealing with one. Dairy is a common one among Celiacs. Personally, I am sensitive to soy, whey, used to be sensitive to eggs (no longer – yay!), and grapes (of all things). I’m lucky, though. I’ve heard of other people who have intolerances to dairy, soy, corn, nuts, casein, nightshades, and various fruits and vegetables on top of gluten.

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  4. 12 Weeks, yikes! I think I’ll pass on that one…

    That’s very interesting about the multiple food sensitivities, I didn’t know that this could be tied to Celiac. You are definitely a wealth of knowledge, I really appreciate all you’ve shared with me!

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  5. Pingback: Celiac Awareness Month with Tasty Meditation | tasty meditation

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