getting worse waiting for endoscopy

[cteo]

Hi everyone,

Ive done 2 blood tests that both confirmed the antibodies for celiac and I am now about 3.5 weeks away from having my endoscopy and colonoscopy. The issue is that I am getting so ill that I can hardly get out of bed some days and have at least 5-10 trips to the toilet everyday. I have horrible sharp pains in my stomach and so much blood in my bowel movements but the doctors said they have no availability to bring forward my appointment. Is this normal? (i know thats a subjective word but i just need to know if this is horribly wrong) And would it be bad for my results if i take a day off gluten every now and then to try to be able to function normally occasionally?

thank you for any help!

[trents]

I think it would not have much affect on the endoscopy/biopsy results if you would take a day or two off each week until the test.

But do you absolutely need the additional confirmation when your antibody tests were both positive?

[knitty kitty]

Welcome to the forum, @cteo!

One only need eat two slices of wheat bread a day.  Perhaps you are eating much more than this amount and maybe you could cut back a little.  You may want to consider cutting back on dairy as well.   Dairy can cause additional inflammation and higher ttg levels.  Eliminating dairy might lessen the severity of some of your symptoms (like the number of trips to the bathroom).

Getting an endoscopy at the time of diagnosis gives you and your doctors a better idea of the level of damage your small intestine has endured so far, and a baseline to compare to future endoscopies to check for healing.  

Have you asked your doctor's office to call you if there's a cancellation?  Calling the doctor's office every few days to check for yourself may keep you fresh in their minds, and like a squeaky wheel...

If the bleeding worsens, don't hesitate to go to emergency services.

Keep us posted on your progress!

 

[cteo]

2 hours ago, knitty kitty said:

Welcome to the forum, @cteo!

One only need eat two slices of wheat bread a day.  Perhaps you are eating much more than this amount and maybe you could cut back a little.  You may want to consider cutting back on dairy as well.   Dairy can cause additional inflammation and higher ttg levels.  Eliminating dairy might lessen the severity of some of your symptoms (like the number of trips to the bathroom).

Getting an endoscopy at the time of diagnosis gives you and your doctors a better idea of the level of damage your small intestine has endured so far, and a baseline to compare to future endoscopies to check for healing.  

Have you asked your doctor's office to call you if there's a cancellation?  Calling the doctor's office every few days to check for yourself may keep you fresh in their minds, and like a squeaky wheel...

If the bleeding worsens, don't hesitate to go to emergency services.

Keep us posted on your progress!

 

Hi,  

I have only been eating one piece a day as my doctor gave me no specific instructions on it and a search through all the possible internet resources seemed to average saying one piece is sufficient.  Do I need to start eating another piece everyday or does the severity of my symptoms mean the damage will still show on the endoscopy?  And thank you, I will try eating less dairy and pestering the hospital more!

4 hours ago, trents said:

I think it would not have much affect on the endoscopy/biopsy results if you would take a day or two off each week until the test.

But do you absolutely need the additional confirmation when your antibody tests were both positive?

I have no clue, I did the two blood tests then got referred to the hospital who have ordered these two procedures now and no one has told me any information on how much to eat or how to manage my stations

[cteo]

3 minutes ago, cteo said:

Hi,  

I have only been eating one piece a day as my doctor gave me no specific instructions on it and a search through all the possible internet resources seemed to average saying one piece is sufficient.  Do I need to start eating another piece everyday or does the severity of my symptoms mean the damage will still show on the endoscopy?  And thank you, I will try eating less dairy and pestering the hospital more!

I have no clue, I did the two blood tests then got referred to the hospital who have ordered these two procedures now and no one has told me any information on how much to eat or how to manage my stations

 

3 minutes ago, cteo said:

Hi,  

I have only been eating one piece a day as my doctor gave me no specific instructions on it and a search through all the possible internet resources seemed to average saying one piece is sufficient.  Do I need to start eating another piece everyday or does the severity of my symptoms mean the damage will still show on the endoscopy?  And thank you, I will try eating less dairy and pestering the hospital more!

I have no clue, I did the two blood tests then got referred to the hospital who have ordered these two procedures now and no one has told me any information on how much to eat or how to manage my stations

*symptoms!

[trents]

7 minutes ago, cteo said:

 

*symptoms!

Unfortunately, most general practitioners are pretty ignorant about celiac disease and testing for it. We often here the story from forum participants that their doctor did not give them proper information for a pretest gluten challenge and many patients drop gluten to alleviate their symptoms before they get tested. Then the tests come back negative and the patient is left in a quandary. 

[knitty kitty]

I agree with @trents that doctors are pretty clueless about testing protocols.  It is the reason the average time for a diagnosis is ten years during which time a cascade of health issues can occur, further clouding the real source of the problem while doctors merely prescribe pharmaceuticals to alleviate the symptoms.  

And, no, severity of symptoms does not correspond to the level of damage.  Some of us are just really good diarrhea makers. 

Hang in there!    

[Scott Adams]

Welcome to the forum, and feel free to share your blood test results here, along with the reference ranges for each test. I mention this because it is becoming more common to diagnose celiac disease now with blood tests alone, and this article covers this in more detail:

 

[cteo]

5 hours ago, knitty kitty said:

I agree with @trents that doctors are pretty clueless about testing protocols.  It is the reason the average time for a diagnosis is ten years during which time a cascade of health issues can occur, further clouding the real source of the problem while doctors merely prescribe pharmaceuticals to alleviate the symptoms.  

And, no, severity of symptoms does not correspond to the level of damage.  Some of us are just really good diarrhea makers. 

Hang in there!    

Thank you for the reassurance about the level of damage! It has really helped! And as for the diagnosis, its been about 8 months since I first went to the gp for the bleeding so I feel like Ive been lucky to hopefully get a diagnosis relatively quickly!

38 minutes ago, Scott Adams said:

Welcome to the forum, and feel free to share your blood test results here, along with the reference ranges for each test. I mention this because it is becoming more common to diagnose celiac disease now with blood tests alone, and this article covers this in more detail:

 

Thank you for the article! But I wasnt actually told the exact results so I will have to call my gopto see if I can get a copy. They just told me over the phone what they mean and referred me “urgently” to the gastroenterologist. 

1 minute ago, cteo said:

Thank you for the reassurance about the level of damage! It has really helped! And as for the diagnosis, its been about 8 months since I first went to the gp for the bleeding so I feel like Ive been lucky to hopefully get a diagnosis relatively quickly!

Thank you for the article! But I wasnt actually told the exact results so I will have to call my gopto see if I can get a copy. They just told me over the phone what they mean and referred me “urgently” to the gastroenterologist. 

gp*

[T burd]

16 hours ago, knitty kitty said:

Welcome to the forum, @cteo!

One only need eat two slices of wheat bread a day.  Perhaps you are eating much more than this amount and maybe you could cut back a little.  You may want to consider cutting back on dairy as well.   Dairy can cause additional inflammation and higher ttg levels.  Eliminating dairy might lessen the severity of some of your symptoms (like the number of trips to the bathroom).

Getting an endoscopy at the time of diagnosis gives you and your doctors a better idea of the level of damage your small intestine has endured so far, and a baseline to compare to future endoscopies to check for healing.  

Have you asked your doctor's office to call you if there's a cancellation?  Calling the doctor's office every few days to check for yourself may keep you fresh in their minds, and like a squeaky wheel...

If the bleeding worsens, don't hesitate to go to emergency services.

Keep us posted on your progress!

 

Maybe this is why my symptoms were not always bad because I didn’t eat this much gluten (2 slices of bread) in my 20’s. it takes more than three weeks for your gut to heal. I think you should stop eating it for 2 weeks. It isn’t worth it. 
 

Make sure they plan on doing two biopsy samples before they put you under. It is not standard to do a separate biopsy of your duodenal bulb and also your duodenum. But my duodenum was negative where the bulb was positive. Make them check both!!! 

[CatrionaB]

Try to hang in there until you get your endoscopy, after that you won't have to eat a crumb of gluten ever again in your life! It's your decision if you need an accurate biopsy! The blood tests were positive so it is clear that you have celiac disease, if you can't bare eating any more gluten, you don't have to. There might still be some damage visible in the biopsy, but if not, you know it was the lack of gluten and you still have celiac disease! Doctors don't really think about your wellbeing, they just think about their protocols... No matter how damaged your gut is, you will need a lot of healing, complete healing can take up to 2 years! So you are most likely vitamin deficient, so take vitamin supplements! I felt like crap until I finally got my iron supplement, now when I don't take my iron for a couple of days I feel miserable.