Celiac Diagnosis or Gluten Intolerance Diagnosis: The Do’s and Don’ts

celiac diagnosis, gluten intolerance diagnosis, gluten sensitivity diagnosis

Celiac Diagnosis or Gluten Intolerance Diagnosis:
The Do’s and Don’ts

Think you’ve got a gluten-related health problem? Perhaps you’re even ready to schedule a celiac diagnosis? We hear you, we’ve been there – and we have a few words of advice. The world of gluten-related diagnoses is rich in land mines and missteps, and your best defense is to come prepared with an arsenal of your own information and facts. We’re not medical professionals, but we do spend a lot of time with them. We also have a wealth of information to share with you from our own personal diagnoses disasters and success stories – and knowledge is power. We want to help you tame the beast. Here are our top five tips for a successful diagnosis.

Find a Celiac Diagnosis or Gluten Intolerance expert near you.

Want to locate the nearest celiac diagnosis or gluten intolerance doctor near you who’s an expert in all things gluten-free? There’s actually a list for that. You can easily find a celiac specialist near you and circumvent the world of trouble that could come if you visit a doctor who’s unfamiliar (or worse, a skeptic) with the world of gluten-related conditions. Instead, opt for a doctor who knows his stuff and takes your symptoms seriously. You’ll save time and get healthy much quicker with a doctor that is committed to diagnosing your disease.

Don’t fail the test.

Don’t stop eating gluten before a diagnostic endoscopy or blood test. We repeat: Do. Not. Stop. Eating. Gluten. The reigning urban legend of Celiac diagnosis, this approach could actually impede your treatment. Let us explain.

When you visit a doctor and you’re exhibiting symptoms related to Celiac Disease, your doctor will likely order a tTG-IgA blood test, and then an endoscopic biopsy. Both of these tests essentially screen for symptoms consistent with Celiac Disease – damage to your small intestine and the presence of Celiac Disease antibodies. So, if you’re on a long-term gluten-free diet when these tests are taken, your body may start to heal and you could unintentionally dodge a proper diagnosis. You could easily fall into a common misdiagnosis of Celiac Disease – Irritable Bowel Syndrome, which is treated entirely differently than Celiac.  It’s like taking the medicine before seeing the doctor – you’re skipping a crucial step.

Stick to the diet.

We hate to say it, but we recommend you skip that famous Last Meal. Your doctor said to stop eating gluten, so stop eating gluten. We know – it’s easy to walk out of that doctor’s office, diagnosis in hand, and head straight to the nearest Taco Bell. The brutal truth: you have a disease, you’ve likely been feeling sick for awhile, and if you kick off your gluten-free diet with a gluten-binge, you’re starting off on a bad foot. Instead of focusing on what you can’t have, get out there and discover what you can have. Truth: many gluten-free foods are better than their gluten-filled equivalents – not to mention healthier, if you play your cards right. Celebrate – not mourn – your new found gluten freedom. In fact, a great way to celebrate your celiac diagnosis (aka gluten freedom)  is with some of our awesome, certified gluten-free snacks. Use code “diagnosis” for 20% all our products now through 1/23.

Stay close to your doctor.

The bad news: sometimes the effects of Celiac Disease and gluten intolerance are long-lasting. From bone thinning to chronic digestive issues, a diagnosis does not equal a free pass to skip your yearly physical for the next 10 years. In fact, along with your yearly physical, it’s recommended that you visit your gastroenterologist (the doc that diagnosed you!) every year, too.

Why? Because as good as you feel on the gluten-free diet, Celiac Disease and gluten intolerance require maintenance and check-ins. You’ll want to stay close to your doctor to keep tabs on your Celiac Disease antibodies, any new symptoms like rashes, stomachaches, and bloat, and check in on often-overlooked Celiac side effects like vitamin B12 deficiency, osteoporosis, and IBS. It’s not going to be your favorite time of year, but your yearly visit is your best bet for maintaining good health post-diagnosis.

Know your truth.

You know best. At the end of the day, you know your body and your needs better than your favorite blogger (even us!), your overly-involved aunt, and your nosy co-worker who once read an article. And although your doctor is the true expert, make sure you’re taking ownership of your health and serving as your own advocate. Your doctor is a busy person, and they are not a mind reader. Keep track of any new or sustaining symptoms, do your research, and bring an exhaustive record of your health to the table at each appointment. If a celiac diagnosis or a treatment doesn’t feel right, talk with your doctor, do a deep-dive on the internet, and seek out a second opinion. The world of gluten-free medical conditions is relatively new, so it’s crucial you take on this brave new world fully-equipped to fight the good fight in the name of your health – and we’re with you all the way.

What tops your list of diagnosis do’s and don’ts? Share your own diagnosis experience and your best tips for the newbies out there in the comments below!

  • alexandra.gregory

    thanks for the advice – getting a daignosis is on my list for a new years resolution so this is very timely and helpful.

  • Maria

    Like many I’m sure, I don’t the difference betwwen IBS or gluten intolerence. I have had issues for some time now. No stomach cramping but have to rush to the bathroom immediately after eating with extrehe diarrhea. I’ve been relying on immodium whenever I have to leave my home. No way to live. I removed gluten the last few weeks. My stomach has flattened and not bloated anymore but it hasn’t stopped the diarrhea. I am at a loss. Any suggestions? I will go to dr. and want to know if I should start eating gluten again to get proper diagnosis. Thanks for your input.

    • Kimberly

      I’ve been gluten and dairy free for almost 6yrs. I’m self diagnosed. My doctors were not willing to do anything but give me more meds. It seems to me that you have multiple food intolerances. Dairy frequently is an issue with gluten intolerance. I’ve also read about oats and coffee having the same molecular structure as gluten and dairy. I would suggest doing your own research and listen to your body. Some find an elimination diet most helpful. Blood test for celiac is only reliable in 32% of the tests. (last I heard) It’s difficult to change what one thinks as normal eating, but it’s worth it! Good luck!!

      • theglutenfreebar

        Hi Kim – thanks so much for sharing your story and the great advice!

    • Tammy

      Soy gives me diahrrea where as we think the gluten/wheat causes bloating. Some time just one quick trip to bathroom from soy.

      • Tammy

        About a yr after going gluten free I noticed reactions to gf soy foods. Then later on I was able to link a forehead headache and need to rub forehead and heaviness of eyelids to ingestion of yeast. So I had pizza and pasta and sandwiches that I reacted too the most when family doctor and I were trying to figure out why I was suddenly bloated, gassy, hurt, headaches, brain fog. Looking back all those foods had all three triggers-no wonder i was miserable! It took several years to identify each food to its result. Doing food logs helped me realize patterns and I’d eliminate something fir a few weeks and then eat again to test for reactions. I’m also lately getting to be lactose intolerant. 10% of time okay but 90% not.
        Keep listening to your body and you’ll figure it out.

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