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I was diagnosed with Celiac Disease back in October through blood work. I have an appointment with Gastroenterology at the end of this month. I have heard horror stories that doctors not finding the villi damaged will make them not diagnose you with Celiac Disease, when in fact you still have it. I have had a upper endoscopy before  and it was the worst experience. (This was years ago when I first started having severe stomach issues. But also before I got severely ill like I am now.  He did not take biopsies and did not find anything. Of course, again he blamed all my pain and symptoms on anxiety) Now that I have been diagnosed with Celiac disease my whole life and symptoms make sense now. Anyway I wanted to meet with the doctor first, to see what he believes when it comes to properly diagnosing celiac disease.  What are some questions that I should be asking this doctor and how can I make the next endoscopy a better experience? Any advice would be greatly appreciated. 

 

Thanks,

Shelby

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Welcome!  

Are you on a gluten free diet?  If so, you will have to go back in gluten for 2 to 4 weeks prior to an endoscopy to obtain at least six tissue samples (biopsy).  Ask to be sedated during the procedure.  Bring all copies of previous lab work (even really old ones) and be prepared to provide a history.  I have written a brief history and presented a graphic family tree containing all family medical information.  My GIs and new PCP have been thankful, not to mention the rest of my family who has benefited from the family tree.  Write down a list of complaints, take notes and if possible bring a friend with you (parent, spouse, sibling, friend).  Sometimes you are taken more seriously and when you are not feeling well, you might miss something.  

The GI may even  skip the endoscopy and give you a diagnosis.  Best to research as much as possible so that together, you can make the right choice.  

Good luck!  

 

Edited by cyclinglady

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Hi,

Well first see how they feel about Celiac Disease. You will need to trust your gut on this one. How many patients has he or she diagnosed via biopsy. Are they still treating them.  What is their experiences with their Celiac patients. Have they attended any seminars or worked any doctors who treat other Celiacs? My daughter has had two endoscopic procedures without any problems. One was prior to her diagnosis to check her esophagus and one was two years later for EoE. I searched for weeks and looked at yelp and read every patient review. But in the end it was who she trusted.  We went to many Doctors as did most people in the forum before we found one. 

Best of luck & welcome to the forum ??

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I like the advice you've already gotten.... I would also add - why did you have a bad experience before with your EGD?  Was it bad anesthesia? A bad nurse? post-op vomiting? If you identify why it was a bad experience, it will be easier to find a good solution.  Address this issue with the GI doc. Maybe it has a solution so that this experience can be better. (I recently had mine - the anesthesia was great, I felt nothing, only felt groggy afterwards, went home slept for 2 hours and woke up feeling great (and hungry))

Also write down 2-3 very important questions for the doctor?  If you don't ask questions, you won't get answers. However, if you ask too many questions, you won't get good quality answers to the questions you do have.  Your questions may be "I would like to be sure I have celiac disease before committing a gluten free life. How can we make sure together that I get the correct diagnosis? What tests do you plan to run during the EGD? i.e. will you do any biopsies? How many?"

 

Good luck!

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Hello Everyone,

 

Thank you for your responses. You have given me some very helpful advice. I am actually a little confused now. I have been told by my doctor and other Celiacs that a blood test was and is enough to diagnose me. While the gluten free diet has been difficult, it is not that much of an inconvenience for me. I was first diagnosed with Fibromyalgia with no hopes of getting better. Not eating gluten for the rest of my life and the possibility of getting better in 6 months to a year is obviously very worth it to me. I do not really feel comfortable going back on gluten for 2-4 weeks just to get a biopsy done, especially if that will set me back after all the hard work I have been doing to recover. Have you had the same experience with blood work being enough for a diagnosis? 

 

Also my bad experience was that the doctor was actually pretty rude to me, horrible bed side manor. I have been having Celiac Disease symptoms for almost all of my life. When I got that endoscopy (before diagnosis) about 4 or 5 years ago they did not find anything wrong. The anesthesia was horrible and I felt everything. I am more nervous that I am going to put myself through this to hear that nothing is wrong again. They blamed anxiety for all of my symptoms then, which was not the problem. 

 

 

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My GI just asks questions about what I've been eating and how I'm feeling and when my symptoms flare up. He also feels around my stomach and back. And I wasn't diganosed with celiac at first my blood came back find I had to get an  endoscopy  and sorry yours didn't go so well last time you went. My experience with it went pretty well and quick was knocked out and woke up like 30 min's later they called and told me I had celiac  sore throat but only last like a week.

 

You can ask them about celiac and or any of your corncerns. 

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On 1/19/2017 at 6:56 PM, celiacgeorigapaeach said:

I was diagnosed with Celiac Disease back in October through blood work. I have an appointment with Gastroenterology at the end of this month. I have heard horror stories that doctors not finding the villi damaged will make them not diagnose you with Celiac Disease, when in fact you still have it. I have had a upper endoscopy before  and it was the worst experience. (This was years ago when I first started having severe stomach issues. But also before I got severely ill like I am now.  He did not take biopsies and did not find anything. Of course, again he blamed all my pain and symptoms on anxiety) Now that I have been diagnosed with Celiac disease my whole life and symptoms make sense now. Anyway I wanted to meet with the doctor first, to see what he believes when it comes to properly diagnosing celiac disease.  What are some questions that I should be asking this doctor and how can I make the next endoscopy a better experience? Any advice would be greatly appreciated. 

 

Thanks,

Shelby

Hey Shelby! I was diagnosed in November. What a ride. So, a few things.

1. I don't think you should assume anything about your villi until you have your endo. I was worried about this too. I asked my GI "what if my villi look normal?" He said that with my blood work there would be no other cause to my numbers aside from celiac. My TTG-iga was >100. He said he'd still want me on a gluten free diet. Turns out, I was stage 3b and my villi were blunted. I had inflammation. I think that tends to be the norm. Most of us have some damage. My son is 3 and had an endo for celiac after high blood tests, and his came back at stage 1. So I don't think you should make assumptions because there really is no way to know. I felt fine until September and I had significant damage that was probably there long before that. 

2. Write down all your questions so you don't forget. But also know, this site is an excellent resource. Doctors know what books tell them, and that's valuable. But all of the people on here actually live with this. So if you have questions please don't hesitate to reach out on here. I have, and I have found these people more helpful than my doctor. 

3. I had my endo without sedation and didn't think it was that bad. Yeah, it sucked. But my GI did it in 4 minutes. After two babies it was a walk in the park lol. 

4. Keep eating gluten. As sick as it makes you and as bad as you hate eating it, you've got to keep eating it until your endo is over. Once that's done then throw it out. You don't need to wait to hear your results. I went gluten free that next day.

 

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On 1/22/2017 at 4:42 PM, celiacgeorigapaeach said:

Hello Everyone,

 

Thank you for your responses. You have given me some very helpful advice. I am actually a little confused now. I have been told by my doctor and other Celiacs that a blood test was and is enough to diagnose me. While the gluten free diet has been difficult, it is not that much of an inconvenience for me. I was first diagnosed with Fibromyalgia with no hopes of getting better. Not eating gluten for the rest of my life and the possibility of getting better in 6 months to a year is obviously very worth it to me. I do not really feel comfortable going back on gluten for 2-4 weeks just to get a biopsy done, especially if that will set me back after all the hard work I have been doing to recover. Have you had the same experience with blood work being enough for a diagnosis? 

 

Also my bad experience was that the doctor was actually pretty rude to me, horrible bed side manor. I have been having Celiac Disease symptoms for almost all of my life. When I got that endoscopy (before diagnosis) about 4 or 5 years ago they did not find anything wrong. The anesthesia was horrible and I felt everything. I am more nervous that I am going to put myself through this to hear that nothing is wrong again. They blamed anxiety for all of my symptoms then, which was not the problem. 

 

 

Ok, I just saw this. 

I kinda felt like my endo was pointless, to be honest. I had the high blood work and my doctor even said, like I wrote earlier, that regardless of my damage (even if I had none) he'd still diagnose me with celiac. So I thought, This is pointless. But it's still the gold standard in diagnosing someone. Sometimes people can have a genetic test, and the blood tests, and the symptoms and a doctor will base a diagnosis on that. I just went ahead with the endo because I trust my doctor and he wanted it done, and it's quick and easy (I had heard). I think you have to go with your gut on that. If you don't want to have it done and you think you've got celiac based on symptoms and blood work then that's your choice. Nobody can make you. For me, I needed to know with certainty that this is what I've got. 

Just go into this with an open mind. It's been a few years since your last endo. Just be calm. You can't change or control any of what they find, at least until after they find it.

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Thank you everyone for your help! I had my endoscopy and colonoscopy done yesterday. I was put under anesthesia this time and it was an overall good experience. My doctor did end up diagnosing me with Celiac Disease because of the blood work and my symptoms. I should hear about my biopsy results within the next few days. I am very sore today, but in better spirits now that this is done and over with! 

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8 hours ago, celiacgeorigapaeach said:

Thank you everyone for your help! I had my endoscopy and colonoscopy done yesterday. I was put under anesthesia this time and it was an overall good experience. My doctor did end up diagnosing me with Celiac Disease because of the blood work and my symptoms. I should hear about my biopsy results within the next few days. I am very sore today, but in better spirits now that this is done and over with! 

I am glad your experience this time was much better!  ?

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15 hours ago, celiacgeorigapaeach said:

I am very sore today, but in better spirits now that this is done and over with! 

Congratulations on completing the diagnostic process. Now you can look forward to healing and hopefully you'll enjoy lot's of good news on that front over the next few weeks and months. :)

 

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