Endoscopy next week

[Tash1]

Hi!! 
 

I haven’t yet been diagnosed with celiac disease and I might not even have it at all. 
I’ve just been looking into it and feel like it’s a possibility. My friend is celiac and had similar symptoms.

my symptoms started around 6 weeks after having my baby. He is now 20 months old and it’s still Going on.

I have stomach pain, back pain, it’s radiates around. It knocks me sick when I haven’t eaten for a couple of hours. I get really gassy and constipated and feel fatigued quite a lot. The pain can be horrendous. 

 

Ive had an abdominal CT scan, a colonoscopy and an MRI on my spine. All clear.

I have a endoscopy of Tuesday. I haven’t had a blood test to detect celiac so
im just wondering if the doctors can see celiac disease on the camera?

I don’t want to ask them if they are testing for that as they know what they are doing and don’t want to question them but I’m just concerned if they don’t test for it and it’s missed? I know that sounds really stupid!! But can they see the scarring and do they always test for these things via biopsy to rule it out? 
 

Thank you!!!

Natasha 

 

[plumbago]

@Tash1 why don't you go ahead and ask for a celiac panel to be drawn before you get the endoscopy? That way you will have more information coming out of the EGD (endo). For example, if you test positive on the blood tests, but negative on the EGD, you will know that, more likely than not, you have celiac and you need to start eating gluten-free. If you are positive on the blood and positive on the EGD, it will be a slam dunk, and all doubt will be removed. This is what happened to me. Getting a blood test before you start eating gluten-free also gives you a good baseline against which to compare future tests, if it turns out you have Celiac. I highly recommend doing those blood tests today or tomorrow.

As for what they are looking for on the EGD (endoscopy), has any mention been made by you or anyone else of the possibility of Celiac? Go ahead and ask them if they can test for Celiac, which by the way, they do by taking tiny samples (biopsies) of parts of the duodenum or small intestine. Me in your shoes, I feel it'd be a shame if I went to all that trouble and no biopsies were taken. Often, the scopist can see damage visually, but it is confirmed by pathology on biopsy.

I recommend more conversation before the procedure.

Good luck.

[Scott Adams]

Be sure to keep eating lots of gluten daily until your celiac disease tests are completed.

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

 

[Tash1]

6 hours ago, plumbago said:

@Tash1 why don't you go ahead and ask for a celiac panel to be drawn before you get the endoscopy? That way you will have more information coming out of the EGD (endo). For example, if you test positive on the blood tests, but negative on the EGD, you will know that, more likely than not, you have celiac and you need to start eating gluten-free. If you are positive on the blood and positive on the EGD, it will be a slam dunk, and all doubt will be removed. This is what happened to me. Getting a blood test before you start eating gluten-free also gives you a good baseline against which to compare future tests, if it turns out you have Celiac. I highly recommend doing those blood tests today or tomorrow.

As for what they are looking for on the EGD (endoscopy), has any mention been made by you or anyone else of the possibility of Celiac? Go ahead and ask them if they can test for Celiac, which by the way, they do by taking tiny samples (biopsies) of parts of the duodenum or small intestine. Me in your shoes, I feel it'd be a shame if I went to all that trouble and no biopsies were taken. Often, the scopist can see damage visually, but it is confirmed by pathology on biopsy.

I recommend more conversation before the procedure.

Good luck.

Hi, thanks so much for your reply! 
 

I won’t be able to get a blood test so soon. It takes about 2 weeks to get a docs appointment where I am.

I will definitely ask the doctor doing the EGD if he can test for it though.
 

They haven’t mentioned what they think it is to be honest. My GP just said it has to be my stomach causing these symptoms and referred me to the specialist who again, didn’t say what they were looking for. They just booked me in for the endo.
 

I did ask my GP if it could be food related and he said no as it wouldn’t cause back pain but my friend who is celiac who had back pain and also my other friend who is gluten intolerant. This is why I’ve been worried that they won’t look for it. 
 

I will mention it and hopefully test as a precaution 🤞🏼

 

Thanks again for the advice 😊

[Tash1]

2 hours ago, Scott Adams said:

Be sure to keep eating lots of gluten daily until your celiac disease tests are completed.

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

 

Hi Adam,

Thank you for the advice! I will eat lots of bread 🤣

[plumbago]

@Tash1 you are welcome! And good luck on Tuesday.

It is worth a try to ask them to draw blood for the Celiac panel right before your procedure - they'll be putting in an IV anyway, might as well. (Honestly, it's almost irresponsible to go straight to an EGD for Celiac, without testing for antibodies first.) Alternatively, if you are really determined (and I understand that you may not be, which makes sense :)), you can order your own tests, the Celiac panel - with online places like ulta labs or request a test. It is not cheap, though.

GI issues not causing back pain? That's a new one for me! Obviously, I am not privy to all the conversations you're having, and it's possible that in the context of those conversations, the presence of back pain struck your physician as being from something else.

[knitty kitty]

@Tash1,

I agree with @plumbago.  Ask the gastroenterologist to do the blood tests for Celiac Disease.  

I found writing out my symptoms and questions on paper very helpful.  I also write down my request for certain blood tests or procedures.  I ask the nurse to put a copy in my file and hand another copy to the doctor.  That way I don't forget to ask those questions important to me in the hurry and flurry of the appointment.  

Do ask for an Erythrocyte Transketolase test which measures Thiamine utilization.  

Subclinical Thiamine deficiency can occur in pregnancy and while breastfeeding.  A shortage of Thiamine is the cause of Gastrointestinal Beriberi which manifests as digestive tract pain, constipation (or diarrhea or both) and unrelenting fatigue.  

Yes, Celiac Disease can cause back pain!  

Best wishes!  Keep us posted on your results!

 

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

[Tash1]

56 minutes ago, plumbago said:

@Tash1 you are welcome! And good luck on Tuesday.

It is worth a try to ask them to draw blood for the Celiac panel right before your procedure - they'll be putting in an IV anyway, might as well. (Honestly, it's almost irresponsible to go straight to an EGD for Celiac, without testing for antibodies first.) Alternatively, if you are really determined (and I understand that you may not be, which makes sense :)), you can order your own tests, the Celiac panel - with online places like ulta labs or request a test. It is not cheap, though.

GI issues not causing back pain? That's a new one for me! Obviously, I am not privy to all the conversations you're having, and it's possible that in the context of those conversations, the presence of back pain struck your physician as being from something else.

Thats great. I will ask 🤞🏼 I will also look at the online tests too. I have already said to my partner that if they can’t find anything il be going private for a second opinion. Just incase as I’m just fed up with feeling like this. There has to be something underlying somewhere.

Thanks so much for your help again! I really appreciate it.

[Scott Adams]

Let us know how it goes!