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The waiting game...

lisaxkelly
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lisaxkelly Newbie
lisaxkelly
Posted

I got my blood test results a year ago and waited 10 months to get a consult with a doctor for the biopsy to confirm celiac.  I gave up gluten for a couple of months and I felt soooo much better but had to start eating it again once I had the consult appointment.  My symptoms are back in full force and only getting worse and I found out today that the wait time for the biopsy is about 10 months....I want the official diagnosis but don't know if I can stand the symptoms for that much longer!  Any tips or tricks for getting through this waiting game?  My symptoms include, but are not limited to, frequent bowel movements with occasional diarrhea, cramps, bloating, twitching in my abdomen, anxiety, fatigue, joint pain etc...

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kareng Grand Master
kareng
Posted
22 minutes ago, lisaxkelly said:

I got my blood test results a year ago and waited 10 months to get a consult with a doctor for the biopsy to confirm celiac.  I gave up gluten for a couple of months and I felt soooo much better but had to start eating it again once I had the consult appointment.  My symptoms are back in full force and only getting worse and I found out today that the wait time for the biopsy is about 10 months....I want the official diagnosis but don't know if I can stand the symptoms for that much longer!  Any tips or tricks for getting through this waiting game?  My symptoms include, but are not limited to, frequent bowel movements with occasional diarrhea, cramps, bloating, twitching in my abdomen, anxiety, fatigue, joint pain etc...

So,... the blood tests were positive?  By a lot or a little?  Sometimes, with children, they will diagnose based on a high Celiac blood test, physical response to a gluten-free diet and a blood re- test that drops significantly, 

lisaxkelly Newbie
lisaxkelly
Posted
  • Author

Yes, my blood test was positive, when I asked my doctor if it was positive by a significant amount she told me that it didn't matter, positive was positive...

I am not a child, I am a 48 year old female...

 

Crispy chick Explorer
Crispy chick
Posted

Where are you? I'm UK and was told the wait would be 12 months, but I got a much quicker appointment on a sun at a hospital quite far away. They are doing overtime catch up. 

Alternatively would you consider going gluten free and doing the 6 week gluten challenge ahead of your biopsy? Rather than stay 10 months on gluten. 

kareng Grand Master
kareng
Posted
9 hours ago, lisaxkelly said:

Yes, my blood test was positive, when I asked my doctor if it was positive by a significant amount she told me that it didn't matter, positive was positive...

I am not a child, I am a 48 year old female...

 

I didn’t mean you were a child - I just meant maybe that would be enough to diagnose you like they do with kids.

GFinDC Veteran
GFinDC
Posted

Hi,

You could call the GI office and let them know that your symptoms are bad,  They may be able to fit you in for an earlier appointment.

Other things to do are to choose the time of day when you eat your gluten dose.  Some people may do better eating it in the morning and some may do better eating it at night..

You can also stop all dairy until the test is over.

The GI should not have had you start the gluten challenge so soon IMHO.  It is not reasonable to expect you to suffer for 10 months waiting for an endoscopy.

 

lisaxkelly Newbie
lisaxkelly
Posted
  • Author
On 6/15/2019 at 11:58 AM, GFinDC said:

Hi,

You could call the GI office and let them know that your symptoms are bad,  They may be able to fit you in for an earlier appointment.

Other things to do are to choose the time of day when you eat your gluten dose.  Some people may do better eating it in the morning and some may do better eating it at night..

You can also stop all dairy until the test is over.

The GI should not have had you start the gluten challenge so soon IMHO.  It is not reasonable to expect you to suffer for 10 months waiting for an endoscopy.

 

I spoke with my GI's office on Friday and was told the wait time would be 10 months - I kind of indicated that I wasn't sure I could wait that long and she offered to put me on their cancellation list, said this is the best she can do for getting me in any sooner.

The GI didn't tell me to start the gluten challenge, I was not aware of how long the wait time was and started eating gluten on my own decision.  And now that I'm on the cancellation list I have to keep eating it so that if I get a call to go on short notice I will be good to go.

I will try your suggestions re: the dairy and time of day - can't hurt to try.  I've been told by others that dairy can affect someone with celiac.

 

 

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Dook Buckenburger Newbie
Dook Buckenburger
Posted

So this is for everyone , waiting to see the Dr. and being told no appointments for months , then to get on waiting list only to wait almost as long anyway. Most offices have a website these days, MAKE SURE you check it.  Here recently the times have been going up and up so did a little research. You can make appointments online and those online slots are RESERVED  for online requests. Just last week my father was told to wait about 8 months to see the Dr even tho hes having such bad reflux he can barely breathe. So i told my mother my trick ( i have MS and im a professional at this junk). She went online and got an appointment this week to see that same Dr. Needless to say she was livid that they had her on a waiting list and had appointments available , not just one but quite a few. 

This has not worked in every case but i would say in the last 2 years this has worked about 8 times. Dentists, specialists, and all such manner all have the same thing going on. So Make sure to check the web to see if you can make appointments ! It just may save you months of suffering. 

kareng Grand Master
kareng
Posted
2 hours ago, Dook Buckenburger said:

So this is for everyone , waiting to see the Dr. and being told no appointments for months , then to get on waiting list only to wait almost as long anyway. Most offices have a website these days, MAKE SURE you check it.  Here recently the times have been going up and up so did a little research. You can make appointments online and those online slots are RESERVED  for online requests. Just last week my father was told to wait about 8 months to see the Dr even tho hes having such bad reflux he can barely breathe. So i told my mother my trick ( i have MS and im a professional at this junk). She went online and got an appointment this week to see that same Dr. Needless to say she was livid that they had her on a waiting list and had appointments available , not just one but quite a few. 

This has not worked in every case but i would say in the last 2 years this has worked about 8 times. Dentists, specialists, and all such manner all have the same thing going on. So Make sure to check the web to see if you can make appointments ! It just may save you months of suffering. 

That’s a good idea!  It works for getting your car into the dealer for an oil change, too!  ?

lisaxkelly Newbie
lisaxkelly
Posted
  • Author
4 hours ago, Dook Buckenburger said:

So this is for everyone , waiting to see the Dr. and being told no appointments for months , then to get on waiting list only to wait almost as long anyway. Most offices have a website these days, MAKE SURE you check it.  Here recently the times have been going up and up so did a little research. You can make appointments online and those online slots are RESERVED  for online requests. Just last week my father was told to wait about 8 months to see the Dr even tho hes having such bad reflux he can barely breathe. So i told my mother my trick ( i have MS and im a professional at this junk). She went online and got an appointment this week to see that same Dr. Needless to say she was livid that they had her on a waiting list and had appointments available , not just one but quite a few. 

This has not worked in every case but i would say in the last 2 years this has worked about 8 times. Dentists, specialists, and all such manner all have the same thing going on. So Make sure to check the web to see if you can make appointments ! It just may save you months of suffering. 

Hey thanks, I don't think this would work in Canada though.  

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