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Questions you MUST ask your Doctor when diagnosed with Celiac Disease

Updated: Jul 6

The following is a transcript from my Podcast, The Healthy Celiac Podcast. If you would like to listen to the episode, you can do so here or on your fave podcast app.

I'm hearing more and more people with a Celiac Disease diagnosis aren't being given the following information from their doctors, and aren't aware that they need to do these things.

So these are the questions that I want you to ask your doctor. Now, if you've been diagnosed very recently, that's awesome. Go ahead and ask these questions. If it's been some time since you've been diagnosed, then some of these questions are still very relevant to you and will help support you.

Number One - Ask For A Referral Letter for Immediate Family Members

The first thing I want you to do is I want you to ask your doctor or your primary caregiver to write for you a referral letter for your immediate family members to be tested. This is super important. Anyone that is your direct / immediate family member also needs to be tested for celiac disease, now that you have been diagnosed. This is because there's a much higher chance that they have celiac disease also. Now the best way to get them to get straight onto doing that is getting a referral letter from your doctor, because they can explain in that letter that an immediate family member has been diagnosed with celiac disease and it's imperative that they also get tested.

Now I've actually had a few people reach out to me recently about this. They have told me that they have got family members that are refusing to get tested. And that's really, really hard. I will be sharing some further info on this in another article soon.

Number Two - Ask For A Recommendation for a Specialist Dietitian or Nutritionist

The second thing I want you to ask, can you recommend a dietitian or a nutritionist who specializes in gluten free or celiac disease? This is super important because as you know, with my story that I've talked about in the past, the dietitian that I was put onto had no clue about celiac disease. He was not a specialist. It wasn't his expertise. And he failed me big time. He failed me miserably and he didn't give me the support that I needed.

So I want you to ask your doctor to recommend or help you find someone that is a specialist in that area, because that's where you're going to get some really fantastic support.

Number Three - Ask Which Follow Up Tests You Need

I want you to ask which follow-up tests do you need. Some people walk away with their diagnosis and don't get any further followup testing. So when I was diagnosed, I had a bone mineral density test to see how my bones were. And this is important because as you may sknow, when you have deficiencies, your body starts to break down. So if you've been struggling with celiac disease for quite some time (prior to your diagnosis) and your body hasn't been absorbing the nutrients that it needs, your bones may have started to break down and you may have started the onset of osteoporosis. So it's important. Find that out from the start. I'd recommend you go and get that sorted out. Also ask which blood tests you need to be getting done. Do you need to have ongoing blood tests to check that there's no gluten in your body, in your system and also endoscopy's colonoscopies? What do you need ongoing? This might be something that more your gastroenterologist will do with you, but it's definitely worth asking your primary caregiver or your doctor, these questions as well.

Number Four - Ask What You Need To Do Ongoing To Maintain Your Health

What do you need each year to maintain your health? What are you going to work with your primary caregiver ongoing, to make sure that your health is where it needs to be, year-in year-out year out.

Number Five - Ask Which Vitamin Deficiencies Do You Need Support With

I want you to check which vitamin deficiencies that you may have, and then therefore that way you can work out which supplements you may need rather than playing the whole guessing game. So you might be low in iron, so that something that you definitely don't want to be taking, unless you know for sure that you have an iron deficiency.

If you have deficiencies in other areas, then it can certainly help with that. So for example, if you are low in vitamin D, that can lead to other problems such as depression. We want to be getting on top of these things and we want to make sure that we taking supplements to support our health and to support our ongoing health needs.

Please make sure that you ask these questions.

Just to quickly recap for you, I want you to ask for a referral letter for your immediate family members to be tested. So when we talk about referral letters for your immediate family, we're talking your Mum, your Dad, any of your children and any of your siblings.

Then number two, I want you to ask if your doctor can recommend a dietitian or a nutritionist who specializes in gluten-free or celiac disease. Number three, you're going to ask which followup tests you need. Number four, what do you need to do each year to maintain your health and number five, which vitamin deficiencies might you have and therefore, which supplements do you need.

So if you haven't gone through these questions with your primary caregiver or your doctor, I want you to make an appointment and go and get on top of these as soon as you possibly can. And if you've already got an appointment coming up, then go through them with your doctor and get some further support.

I'd love to hear from you. I'd really love to know if this episode has helped you. So please send me a DM over on Instagram here or leave a comment below.

To navigate the challenging journey of Celiac Disease, I recommend joining Ultimate Celiac System for guidance. This will not only provide the practical advice required but also the emotional support necessary for coping with this lifelong condition. You can learn more here.

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