Still waiting...

[AnneMcM]

Hi Still waiting for my urgent colonoscopy and endoscopy (since Jan). Still having problems and now have a new pain in the right side of my back, comes and goes. Toward lower rib cage. Any thoughts? Thanks

[Scott Adams]

Can I assume that you are eating gluten daily now? If so, these are common symptoms of gluten sensitivity or celiac disease, but of course they also could be something else, so be sure to talk to your doctor about your symptoms. 

If you are eating gluten for your tests, then you may want to ask your doctor if you can stop until a few weeks before your test, and here is the normal protocol:

 

[AnneMcM]

Many thanks Scott, this is helpful. . I am still eating gluten. Such a long waiting lists, been told I should get the tests in June.

[Scott Adams]

Let us know how it turns out. Unfortunately a negative test for celiac disease won't rule out non-celiac gluten sensitivity, which ~10x more people have than celiac disease...no test yet for NCGS.

[knitty kitty]

@AnneMcM,

You're almost to June!  Hang in there!  

I had pain on my right side up under my ribs.  Turned out it was my gallbladder.  Mention it to your doctor and the doctor doing the endoscopy.  They can check the gallbladder while you're under.  

A poorly functioning gallbladder is not unusual in Celiac Disease.  The gallbladder doesn't work so well when there's a thiamine deficiency.  

Thiamine is Vitamin B1.  Vitamin deficiencies are common in newly diagnosed Celiacs, so be sure to get checked for other nutritional deficiencies caused by malabsorption due to Celiac Disease.

Keep us posted on your progress!   We're all cheering you on! 

[AnneMcM]

Many thanks for your replies, I will keep you updated. 

[AnneMcM]

Hi been told I'll get a colonoscopy and endoscopy 5th June, in a hospital about 70 miles from where I live. Delighted, as 'red flagged end of Jan. Going to stay in hotel day before as don't fancy travelling when fasting and taking laxatives. 😊 

Hopefully can rule out/in bowel or stomach issues. Just want to know what's causing the pain.

[Scott Adams]

Let us know how it turns out...good luck!

[AnneMcM]

On 5/24/2023 at 12:18 AM, Scott Adams said:

Let us know how it turns out...good luck!

Thanks Scot, will do. 

[AnneMcM]

Hi Scott,

Just home from procedures OGD went well thankfully, nothing unusual, he took 4 biopsies from my duodenum. Results will be3 months!  I'm not expecting anything sinister.

The colonoscopy failed due to 'looping' in my colon, which couldn't be controlled by posture change or pressure. Referred for CT colon scan. 

Fabulous staff. 😊

[Scott Adams]

Three months for the results seems like a very long time. Oh well, you may be able to try out a gluten-free diet for a few month, but if they should want you to undergo more tests for celiac disease you would need to start eating it again 6-8 weeks before any blood tests.

[AnneMcM]

Yes, I was shocked. Our NHS is being run down by the government

 

[AnneMcM]

Hi I've just been asked to go for blood tests on Thursday, at a local phlebotomy clinic.

I had an endoscopy done 6 weeks ago, biopsies taken (no results yet).

Last had bloods done 6 mths ago and was then referred for endoscopy and colonoscopy. 

Wondering why I have to get bloods done, when still waiting for biopsy results?

Thanks

Anne

[Scott Adams]

This is strange indeed...and have you been eating around 2 slices of wheat bread's worth of gluten for the last 6 weeks? If you've cut back on gluten, or have gone gluten-free, the blood test results may end up false negative. Normally the diagnosis goes one direction: blood tests > if positive endoscopy > if positive diagnosis. I would ask them why you need this again, and if you've been gluten-free or low gluten, then you should postpone it for 6 weeks and eat lots of gluten before the test.

[AnneMcM]

17 hours ago, Scott Adams said:

This is strange indeed...and have you been eating around 2 slices of wheat bread's worth of gluten for the last 6 weeks? If you've cut back on gluten, or have gone gluten-free, the blood test results may end up false negative. Normally the diagnosis goes one direction: blood tests > if positive endoscopy > if positive diagnosis. I would ask them why you need this again, and if you've been gluten-free or low gluten, then you should postpone it for 6 weeks and eat lots of gluten before the test.

Hi Scott

Thans for your reply.

I have been continuing to eat gluten. 

Went for the bloid tests and nurse said the doctor who had did my endoscopy had requested them. Range if different test samples including electrolytes and check for ceolic disease. My ITA?? blood result was 5.6 in Jan. (normal is 0-4).

Also told results would be known today. Have already tried to contact the endoscope doctor but he is a locum. 

Thanks.

Anne

 

 

[Scott Adams]

In case your biopsy is normal or inconclusive, approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

[AnneMcM]

Many thanks Scott. I am hoping to hear something next week. 

 

[Scott Adams]

Let us know how things go for you.

[AnneMcM]

I will do Scott. Just wish I would know why I feel unwell so much. 

[AnneMcM]

 

On 7/15/2023 at 1:24 PM, AnneMcM said:

I will do Scott. Just wish I would know why I feel unwell so much. 

Hi Scott

I just found out today that there is nothing abnormal in my biopsies or ct scan.

I have been feeling so unwell that last week (before I got results) I cut way back on gluten and feel much better. Not sure if it's a coincidence. 

I don't know what to do next!!

I cope better with knowledge.

Thanks 

Anne

[Scott Adams]

I would try a gluten-free diet for a few months.  If your symptoms go away on a gluten-free diet it would likely signal NCGS.

[AnneMcM]

14 hours ago, Scott Adams said:

I would try a gluten-free diet for a few months.  If your symptoms go away on a gluten-free diet it would likely signal NCGS.

Thanks Scott. I must read up on NCGS.