Navigating your way to proper diagnosis, here are the major signs and symptoms of celiac disease to take into consideration before visiting your doctor for thorough celiac testing.
The muddy waters that come with navigating and figuring out a celiac disease diagnosis. They can be frustrating to say the least. First off, you really could have any symptom under-the-sun or, funny enough, you may have no outward symptoms at all. That’s why the journey to a REAL celiac diagnosis can be so difficult and so many of us suffer for years before we know what’s wrong. Just take a look at some of the big signs and symptoms of celiac disease below.
There are a whole host of chronic symptoms (seen on left), already diagnosed conditions that can accompany celiac disease and should be looked into (top right), and vitamin and mineral deficiencies that can be indicators of celiac disease (bottom right). You notice that these symptoms can be common to many different illnesses. Just because you brittle nails doesn’t mean you have celiac. As I stated above, some celiacs never have any symptoms (the “silent celiac”) and only find out through genetic testing due to a relative finding out they have celiac. (See how difficult this can be?!)
Now, before you go throwing out your whole wheat bread, let’s take a step back. If you suspect something is up you MUST see your doctor (a gastroenterologist with a background of celiac disease would be preferred). You MUST be eating gluten, as normal, to be properly diagnosed. If you stop and then wait a few weeks or months before getting an endoscopy/biopsy and blood work done…you’ll risk getting false negatives and inaccurate results. You should also be checked for the celiac genes (read this post for the medical overview) which can help not only you, but your family as well in their predisposition to celiac.
The most important thing to remember is the devastating effect of malnutrition with undiagnosed celiac. The longer you put testing off or suffer with symptoms, the more sick you become, whether you realize it or not. Malnutrition is the foundation of all these symptoms. You body is under constant attack and so inflamed, damaged, and sick that it can function properly or taken in the nutrients it needs to thrive. This results in worse and worse effects that can then manifest into much more detrimental and irreversible health conditions.
So tell me:
+ Celiacs: Did you have outward symptoms, or none at all? Outward!
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Anya says
Thanks for this list. I tested negative but definitely exhibit some of those symptoms. I’ve been off gluten for couple of years but not as strict anymore and definitely paying for it now.
Rebecca @ Strength and Sunshine says
Yea, well…
Raia says
I think I have had every one of those symptoms, and at least two of those additional diagnoses. :/ Celiac sucks. But thank God we now know what it is and are able to deal with it!
Rebecca @ Strength and Sunshine says
The not knowing and pre-diagnosis is the worst!
kimmythevegan says
Very informative!
I’m pinning & sharing.
Rebecca @ Strength and Sunshine says
Thanks!
Nikki Frank-Hamilton says
I’m not a celiac, but I’m definitely gluten intolerant. I had so many of these symptoms; dizziness, blurred vision, weakness, bloating, abdominal pain…just to name a few. But the pain in the bones and joints was the worst. Some of this was due to my AI disease, but once I omitted gluten I began to have fewer issues. And I lost 20+ pounds in just over a month. It’s been 18 months since I took gluten out of my diet and I feel so much better!
Rebecca @ Strength and Sunshine says
It may not be gluten though. Autoimmune diseases are all so similar and if you change your overall diet, that would be the case. Also cutting out gluten is NOT a means of weight loss at all.
Melissa Ruddy says
Learned a lot about celiac from a co worker who suffered for years before she was diagnosed. Posts like this are so important in spreading information about the disease. Getting a proper diagnosis is life changing for celiac sufferers. Good job getting the word out. Great information.
Rebecca @ Strength and Sunshine says
Yes, it’s part of our “celiac duty” to advocate and educate.
Victoria @DazzleWhileFrazzled says
Thanks for the overview of symptoms. I admit I don’t know much about celiac disease so it was helpful to see a list of signs and symptoms. Who knew it was so extensive!
Rebecca @ Strength and Sunshine says
Glad it opened your eyes.
Deborah Davis says
This easy to understand symptom information is so helpful! Thank you for sharing the major signs and symptoms of celiac disease to take into consideration before visiting the doctor for thorough celiac testing. I am sharing this with friends and family too!
Rebecca @ Strength and Sunshine says
Thanks Deb!
Robin says
Great list…thanks so much for sharing. It took me 4 years to get a diagnosis — hopefully things are changing these days and blogs like yours make it easier for us to take control of our health care..xo
Rebecca @ Strength and Sunshine says
I hope so. Health care providers are still just not educated properly on autoimmune disease.
Kim Seghers (This Ole Mom) says
Wow! Thanks for this information. After reading your list it has me wondering if I have this disease. I have a lot of the symptoms on here.
Rebecca @ Strength and Sunshine says
You probably don’t.
Marla says
I actually had many symptoms but did not know that it was celiac disease. Being tested for food allergies is very important but I have found that there is not perfect test that is completely foolproof. So you need to listen to what your body is telling you. Pinned & tweeted !
Rebecca @ Strength and Sunshine says
Yes, yes, that’s always important, but you should always be medically tested and advised first!
Kelli @ Hungry Hobby says
Thanks Rebecca! As an advocate for food sensitivity testing I’ve recently took a step back and realized how crucial it is to at least run a celiac panel when delving into the world of food sensitivities. I believe it’s crucial to know whether you will have a reaction to a food or if your body will attack itself. It’s important for you to know and for your family members to know!
Rebecca @ Strength and Sunshine says
Yes, yes, 100%! We need to know the differences between autoimmune disease/allergies/intolerences as they do “overlap” in so many areas, but they truly are so different and each need to be given individualized care!
Kristen @A Mind Full MOm says
Saving and sharing with friend who need this. Thanks Rebecca!!
Rebecca @ Strength and Sunshine says
Thank you Kristen!
Robyn @ Simply Fresh Dinners says
This is a very valuable, informative post, Rebecca. I have a niece with celiac disease and it took ages to get diagnosed properly. It was finally her mom that started getting to the bottom of it by researching online. Great job!
Rebecca @ Strength and Sunshine says
Thank you Robyn <3
I'm glad that I only had to suffer for a few months (really badly at the end), but if my symptoms were as they were then for years before that...I don't even know what I would have done!
Kristy @ Southern In Law says
I didn’t really have any obvious external symptoms other than things that were overlooked as IBS, however, looking back I now realise that many of my issues in the past were definitely due to coeliac disease!
For me some of the biggest symptoms were little known ones – like anxiety, loss of appetite, hair loss and unexplained weight loss (even when I was put on a “diet” to gain weight, it just kept falling off!). The doctors even think it stunted my growth a little when coeliac disease “switched on” as I grew 1 and 1/2 inches just a few months after cutting gluten from my diet (and I was almost 20 and that was the first time I’d grown in YEARS!)
Rebecca @ Strength and Sunshine says
Yes, those are classic signs! But yea, signs we don’t realize until afterwards looking back. I always think about those times when I was so sick when I was younger but it never ever would have crossed my mind to be anything like celiac!
Harriet Emily says
This is such an amazing, insightful list Rebecca! It will help so many people! Thank you so much for sharing it with us 🙂
Rebecca @ Strength and Sunshine says
Thanks Harriet!
Lindsay Cotter says
It’s so important to be aware of the signs and symptoms! You did a wonderful job with this informative post!
Rebecca @ Strength and Sunshine says
Thank you Lindsay!
Laura @ Sprint 2 the Table says
I think Vegas has at least some form of gluten intolerance, but thankfully nothing THAT severe. We have a family friend that literally can’t even touch gluten – we have to keep the bread in different grocery bags if they’re coming to dinner. She manages it really well though!
Rebecca @ Strength and Sunshine says
Well, is it celiac?
Kristina @ Ms.Modify says
It took me over 7 years to get a celiac diagnosis. The symptoms I was having we’re all over the place, everything from fatigue, brain fog, hair loss, stomach issues, etc that doctors kept telling me it was other things. I’ve heard everything from anxiety to thyroid issues (even though my tests were normal). I think because there are so many different symptoms associated with Celiac, is why often it takes longer for a doctor to think of testing for celiac.
Rebecca @ Strength and Sunshine says
Yes, yes! That’s why we need doctors to be more educated and test early! I had to suggest getting tested myself, otherwise who knows how long I would have gone being sick!
Kat says
Thank you for this list! Though I must say, it’s a pretty daunting one. Though I have not gone to a doctor to be diagnosed, I took myself off gluten after years of stomach cramps, insomnia, brain fog, acne and a plethora of other symptoms. And guess what? Since going gluten-free I can sleep at night, I don’t get brain fog mid afternoon and I don’t have awful stomach cramps every time I eat a sandwich! I don’t know if I have actual Celiac or just gluten-intolerance [I think the latter] but I am not going to go back to gluten now that I know how it feels living without it!
Rebecca @ Strength and Sunshine says
That’s why you should always get tested first, to know for sure!