How to get a Celiac Disease Diagnosis Ep. 106

Do you suspect you or someone you care for has Celiac Disease?
You'll find out how to push for testing to get a diagnosis in this episode.
Many people share that their doctor has dismissed their requests for getting tested, but armed with the right information and questions, you can visit your doctor confidently and walk away with a referral for testing.

Want to know how I've nailed living with Celiac Disease? Ultimate Celiac System has all my exclusive tips, secrets and insights.
Find out how Ultimate Celiac System can support your Celiac journey here
https://belindawhelantraining.com/ultimate-celiac-system

Wish you could get gluten free meals on the table fast that the whole family will love? Check out Meal Plans Made Easy
https://belindawhelantraining.com/gluten-free-meal-plans-made-easy

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Chapters

• 0:00 Getting Diagnosed With Celiac Disease
• 7:39 Navigating Celiac Disease Diagnosis

Transcript

Speaker 1: 0:24

All right, welcome back to this week's episode. I'm Belinda Whelan, the host of the show. I am a certified holistic health coach and I specialize in follow-up care for women with celiac disease. So if you've stumbled across this episode, it might be because you think perhaps you have celiac disease and you're looking for answers. Or perhaps you've already got a celiac disease diagnosis and you want to know how to go about getting one for someone else that you care about whether it's your child or someone else that you know, or someone in your family Because many people get a celiac disease diagnosis and it can be a fluke. It can kind of happen very easily for some people and for others it can be quite a journey. So I want to help you discover how to get a correct diagnosis without, you know, jumping through hoops and dealing with some of the issues that many, many people face when trying to get diagnosed. So the first thing is to go to your doctor and explain to them why you want to get tested for celiac disease. It could be for a number of reasons. It could be because someone in your family has got celiac disease. So if you have a family member that has celiac disease so a parent, a sibling or a child, you definitely should get tested for celiac disease. That is enough of a reason for your doctor to do that test for you. Another reason could be that you are experiencing symptoms and you have no idea what they are, but you think that gluten is causing the problem for you and you want to rule out celiac disease. So that's a really great reason to get tested as well. Another reason for getting tested for celiac disease could be perhaps you've been living with something else like IBS and you thought you would get better after an IBS diagnosis and doing all of the things that you were recommended to do, but it hasn't improved and you think there's something further going on. Then definitely getting tested for celiac disease can be a really really good idea Now.

Speaker 1: 2:27

Before you go and get tested for celiac disease, it's actually really important that you continue to consume gluten Now. If you've already cut out gluten, this can be quite scary, but if you've cut out gluten and you go get tested for celiac disease, it actually won't give you the correct result. So unfortunately, you do need to consume gluten in the lead up to the blood test. So for adults, it's recommended around about two slices of gluten containing bread per day for six to eight weeks, and for a child it can be just one slice of bread a day. But speak to your doctor and find out what they want you to do first. If they have no idea, stick to these guidelines. But they may expect more from you. They may want you eating more gluten. So do what they recommend. Unless they have no clue, then definitely stick to eating this amount of bread. All right, so do that for six to eight weeks and then go in and request to get the amount of bread. All right, so do that for six to eight weeks and then go in and request to get the blood test done.

Speaker 1: 3:32

So your doctor will be screening for two different things, hopefully. So they will do a celiac serology test. So they will be looking for an immune response to gluten within your blood, and then they may also do a gene test. So they'll be looking for HLA-DQ2 or HLA-DQ8. So most people will have one of these genes, and when I say most, I'm only saying that because some people have been given a celiac disease diagnosis without those genes. Whether that celiac disease test is actually accurate, probably not. They probably have more like non-celiac gluten sensitivity. But for fairness sake. Some people have actually received a diagnosis without those genes, but generally you need to carry one of those genetic markers in order to get a celiac disease diagnosis. Now, not all doctors will request that gene test, but they will do the celiac serology test. So from there, what happens is you'll get the blood test, the blood will be sent off, your results will come back and then your doctor should make a follow-up appointment with you and you should be given your results from there.

Speaker 1: 4:51

Now here's where it gets interesting. Some doctors will send you to go get an endoscopy where you will get a scope done. Some doctors will not. The gold standard is to go get an endoscopy done, and the reason for this is they can go in through down your throat into your small intestine and they can take biopsies. So they'll take multiple biopsies from within your small intestine, they send those off to a lab, they get looked at under a microscope and then they can determine whether you truly do have celiac disease. They can look at the damage that's been done. But some doctors will diagnose you based on your blood test only because your levels may be through the roof, and they don't send you off for that endoscopy. So when I got diagnosed with celiac disease. Mine was based off of my blood test only because my levels were so high and through the roof that it was the only explanation, and both my doctor and gastroenterologist were quite happy to give me that diagnosis. But in today's world, most people are saying that the gold standard is to get a diagnosis through an endoscopy. So that is something to consider and make sure that you get done.

Speaker 1: 6:10

If, given that option, now when you go and get your endoscopy, you still need to be consuming gluten. So you may have been told yes, you've got celiac disease after your blood test, but you still need to go and have a scope. Between that appointment and your scope, you still need to consume gluten, unfortunately. So stay on the gluten, make the most of it. Just enjoy all your favorite foods until you go and have your scope done and then after that, then you can eat gluten-free and start to heal your body and start to feel better. Now, once your scope results come back, that is where you get your final result and get given the complete answer to a hundred percent yes, you have got celiac disease, and usually this is where you should be told to start eating gluten-free. So most doctors will give you that result and send you on your merry way, and that's kind of where it ends for them.

Speaker 1: 7:07

Most people don't get the support from their doctors that they need after a celiac disease diagnosis. So if this is something that happens to you or has already happened, this is where I step in. This is my I guess my calling. This is what I love to do, because for me, when I got my celiac diagnosis, I was exactly the same. I was just told to go and eat gluten-free and I had to figure it all out for myself. So it took me years of trying to figure things out before I healed my body and started to feel better.

Speaker 1: 7:39

So if you want my guidance with that, please reach out. Before I healed my body and started to feel better. So if you want my guidance with that, please reach out and I'd love to support you so you can head to my Instagram to find out more the healthy celiac, or you can go to my website, belindawheelancom, and just find out more about how I can support you. So I'll pop all of those links below and you can check them out, but I hope that this episode has given you a bit more guidance and a bit more insight on how to actually get a celiac disease diagnosis, because there is a lot of confusion around it and even doctors are getting it wrong. So follow these steps and you should be on your way to getting the results that you need, whether it's positive or negative, but either way, this is the correct way of going about getting a celiac disease diagnosis. So thank you so much for tuning into this episode and I look forward to talking with you again very, very soon. Have a great week, take care. Bye.