Waiting on an endoscopy with no time frame, but symptoms getting worse?

[AlexInferno]

So in August I did a blood test as I had, and still have severe fatigue. The nurse suggested to test for coeliacs, and ran it through the GP so I wouldn’t have to have more bloods done at a later date. They came back with a borderline positive for coeliacs, so my GP referred be for an endoscopy. They told me if I had not heard anything in 14 working days to let my GP know. When that time frame came and passed I let my GP know, and a few days later they sent me a message letting me know that I was in a waiting list with no time frame cause of the current circumstances and to let them know if my symptoms change or worse.

Since last seeing my GP, I’ve barely been able to eat cause of nausea and bloating making me feel full all the time, and I’m the last week I’ve been having pale, loose stool.

At this point I’m wondering how severe my symptoms would have to be before anything is done, as I’ve had severe stomach pains and low appetite for months but doctors don’t seem too bothered or concerned.

 

sorry if this is way too long, honestly not sure what to do at this point, as my GP has advised to keep gluten in my diet as it will be needed for when I do have my endoscopy.

[trents]

I assume by the way you spelled "coeliacs" that you must be dealing with the UK health care system.

[AlexInferno]

8 minutes ago, trents said:

I assume by the way you spelled "coeliacs" that you must be dealing with the UK health care system.

Yeah, sorry for not mentioning that.

[cyclinglady]

Welcome!  
 

I am sorry that you are in this predicament.  Because of the pandemic, it was reported that the British (you spelled celiac differently) Society of Gastroenterology has been back logged on getting procedures done.  This is pretty understandable.  You can read about it here:

https://www.bsg.org.uk/covid-19-advice/covid-19-specific-non-biopsy-protocol-guidance-for-those-with-suspected-coeliac-disease/
 

You might want to share this with your GP.  Together you can decide which  if you should trial the gluten free diet for now and then reintroduce gluten back into your diet for two weeks prior to the endoscopy to obtain biopsies.  This is called a gluten challenge.  It takes much longer to repeat the blood tests, but two weeks of suffering should be doable based on member reports.  
 

I can share this.  I was in the same position as you.  My daughter came home from her  university in March.  She was not feeling well.    We had her tested for celiac disease the prior year (when we were deciding which university she should attend).  Her results were negative then.  But she had exams to take so she just went gluten free.  She needed to feel well and function.  The diet worked.  Once summer hit, she called her doctor.  Her doctor thought that my daughter’s decision to trial the gluten free diet was wise.  Her doctor did check her thyroid and ran bloodwork.  She was diagnosed with autoimmune thyroiditis (like me).  Chances are she has celiac disease too like me.    My daughter can decide if she needs a formal diagnosis later, after this pandemic and after she graduates.  Is this the best situation to be in?  No, but it is the best thing for her.  
 

I hope you can feel well soon.  Keep us posted.  

Edited October 15, 2020 by cyclinglady

[trents]

What would happen if you went to the Emergency Department? Here in the USA, it is my experience that if the Emergency Department admits you to the hospital then you get fast tracked as far as testing goes.

[AlexInferno]

3 minutes ago, trents said:

What would happen if you went to the Emergency Department? Here in the USA, it is my experience that if the Emergency Department admits you to the hospital then you get fast tracked as far as testing goes.

Honestly, don’t think much would happen. Ended up in emergency department, several times in the space of a few months 2 years ago, cause of severe stomach pain and extreme vomiting (like couldn’t even keep down water or anti-nausea medicine down) every time they weren’t too concerned until they saw how much I was vomiting, and then they would just give me an anti- nausea jab, and send me on my way. It took my doctors to do several blood tests, try several different long term anti nausea medicine, and considered IBS, before they referred for an endoscopy. Turned out I had several ulcers, which had burst (I was vomiting blood on one trip to emergency department, but they weren’t concerned). This lasted over almost a year. Endoscopy took a month after referral, but obviously the current situation there would be a delay.

[AlexInferno]

14 minutes ago, cyclinglady said:

Welcome!  
 

I am sorry that you are in this predicament.  Because of the pandemic, it was reported that the British (you spelled celiac differently) Society of Gastroenterology has been back logged on getting procedures done.  This is pretty understandable.  You can read about it here:

https://www.bsg.org.uk/covid-19-advice/covid-19-specific-non-biopsy-protocol-guidance-for-those-with-suspected-coeliac-disease/
 

You might want to share this with your GP.  Together you can decide which  if you should trial the diet for now and then reintroduce gluten back into your diet for two weeks prior to the endoscopy to obtain biopsies.  
 

I can share this.  I was in the same position as you.  My daughter came home in March.  She was sick from the schools food.  We had her tested for celiac disease the prior year (when we were deciding which university she should attend).  Her results were negative then.  But she had exams to take and she just went gluten free.  She needed to feel well and function.  The diet worked.  Once summer hit, she called her doctor.  Her doctor thought that my daughter’s decision to trial the diet was wise.  Her doctor did check her thyroid and ran bloodwork.  She was diagnosed with autoimmune thyroiditis (like me).  Chances are she has celiac disease.  My daughter can decide if she needs a formal diagnosis later, after this pandemic, after she graduates.  Is this the best situation to be in?  No, but it is the best thing for her.  
 

I hope you can feel well soon.  Keep us posted.  

I am tempted to go gluten free until I hear something, as it is causing me a lot of pain and upset. My only problem is my diet is extremely limited at the moment due to nausea, and I’m not too sure what I need to add to supplement what I am missing. I did suggest going gluten-free to my dr but they were very adamant they I do not remove it yet.

Thank you for sharing, hopefully you and your daughter are feeling well.

[cyclinglady]

27 minutes ago, trents said:

 

10 minutes ago, AlexInferno said:

I am tempted to go gluten free until I hear something, as it is causing me a lot of pain and upset. My only problem is my diet is extremely limited at the moment due to nausea, and I’m not too sure what I need to add to supplement what I am missing. I did suggest going gluten-free to my dr but they were very adamant they I do not remove it yet.

Thank you for sharing, hopefully you and your daughter are feeling well.

We are both doing well.  The gluten free diet does work!

 I can suggest consuming foods (containing gluten) that are soft and mushy and cooked because anything can be hard to digest.  Think chicken noodle soup, beef barley soup, saltine crackers, etc.  You can also give your GI tract a break by doing a 12 hour fast (only water, coffee without cream or sugar, or plain tea).   Some members who are doing a gluten challenge like to consume their gluten before bedtime.  At least they hope to fall asleep and not feel the pain!  
 

Good luck!  Maybe your area will open to procedures soon or maybe there will be a cancellation.  Keep calling.  Be nice.  

Edited October 15, 2020 by cyclinglady

[DJFL77I]

just go gluten free and see if it helps... 

also there should be no "waiting list" for people who are throwing up blood..    Emergency endoscopy should be done

 

[AlexInferno]

So an update, spoke to another dr who suggested to go gluten free temporarily until I get an appointment. Now I just have to find stuff I enjoy that is gluten free 😅 thank you all for your replies and help 

[Clancy]

On 10/15/2020 at 4:36 PM, AlexInferno said:

So in August I did a blood test as I had, and still have severe fatigue. The nurse suggested to test for coeliacs, and ran it through the GP so I wouldn’t have to have more bloods done at a later date. They came back with a borderline positive for coeliacs, so my GP referred be for an endoscopy. They told me if I had not heard anything in 14 working days to let my GP know. When that time frame came and passed I let my GP know, and a few days later they sent me a message letting me know that I was in a waiting list with no time frame cause of the current circumstances and to let them know if my symptoms change or worse.

Since last seeing my GP, I’ve barely been able to eat cause of nausea and bloating making me feel full all the time, and I’m the last week I’ve been having pale, loose stool.

At this point I’m wondering how severe my symptoms would have to be before anything is done, as I’ve had severe stomach pains and low appetite for months but doctors don’t seem too bothered or concerned.

 

sorry if this is way too long, honestly not sure what to do at this point, as my GP has advised to keep gluten in my diet as it will be needed for when I do have my endoscopy.

Thank you for sharing this, I’m in exactly the same predicament as you. When I spoke to the appointments office at the gastro department at my local hospital, they stated there was at least a 3 month backlog on appointments as non urgent procedures had been suspended due to C-19 and they are now catching up. 

Your post, and subsequent helpful comments from other forum members, have helped me decide to call my GP tomorrow to discuss next steps as the thought of being in this much pain for at least another 3 months had filled me with despair. 

Thanks so much, and best of luck to you! 
 

 

[Scott Adams]

3 months wait is unacceptable. I would personally not wait that long and continue to eat gluten, because it will cause your body much damage if you have celiac disease. 

[AlexInferno]

9 hours ago, Clancy said:

Thank you for sharing this, I’m in exactly the same predicament as you. When I spoke to the appointments office at the gastro department at my local hospital, they stated there was at least a 3 month backlog on appointments as non urgent procedures had been suspended due to C-19 and they are now catching up. 

Your post, and subsequent helpful comments from other forum members, have helped me decide to call my GP tomorrow to discuss next steps as the thought of being in this much pain for at least another 3 months had filled me with despair. 

Thanks so much, and best of luck to you! 
 

 

My dr has also suggested that they start to monitor my weight from now on as well, assuming that if there is major weight lost they can try and move it along faster. Not sure how much it will help my case cause no matter what I can never loose weight. Even when I had stomach ulcers and vomiting all the time I didn’t loose any weight 🤦‍♀️

[Scott Adams]

Your doctor is using old knowledge here...most celiacs are not underweight, and a significant number are overweight, but the real issue is the damage being done, and how severe your symptoms are. Yours sound severe, so why would your doctor subject you to what amounts to torture for 3 months just to get a piece of paper saying you've got it? Of course with the symptoms you described I would never let any of my patients eat gluten for 3 more months, but I'm not a doctor!

[AlexInferno]

2 minutes ago, Scott Adams said:

Your doctor is using old knowledge here...most celiacs are not underweight, and a significant number are overweight, but the real issue is the damage being done, and how severe your symptoms are. Yours sound severe, so why would your doctor subject you to what amounts to torture for 3 months just to get a piece of paper saying you've got it? Of course with the symptoms you described I would never let any of my patients eat gluten for 3 more months, but I'm not a doctor!

Yeah, well fingers crossed my symptoms will not persist now I’ve started gluten-free.

[DJFL77I]

are you in some crappy liberal state...  because here in FL there is  no waiting around for procedures  😏

[Beverage]

Be aware that you need to be back on gluten for quite awhile before your endoscopy.  You can search the group for how long...it's very important to be eating gluten before the endoscopy, and for quite awhile, but I don't remember...12 weeks? 8 weeks?  equivalent of 1 slice of bread a day?

And I have read that once someone is gluten free that does have Celiac's, and then they go back on gluten, the symptoms are much worse as supposedly the immune system that has been getting beaten down from eating gluten, has rebounded a little, and mounts a stronger attack.  

Also, if you are going to continue with going gluten free, stay off all the processed gluten free packaged stuff. It's super bad for you, with lots of additives and is super refined starches and such.  The only gluten free diet you should be doing now is whole foods, meats and vegetables and fruits, no grains, especially NO OATS (most highly cross contaminated grain).

And I'm so very very sorry you have to go through this, it's unbelievable that anyone with possible Celiac's should have to wait this long for the endoscopy (which is notorious for missing the damage anyway and so the chance of false negative is huge).

[Beverage]

And a note about the weight...I was a little overweight, figured it was just me getting older.  But as soon as I found out I had Celiac's and went gluten free, I dropped 30 lbs in a MONTH!!!  and I was literally a bag of bones underneath from not absorbing any nutrition.  It's taken me 5 years, but I've built back up muscle and bones and doing great at 64.

[AlexInferno]

5 minutes ago, Beverage said:

And a note about the weight...I was a little overweight, figured it was just me getting older.  But as soon as I found out I had Celiac's and went gluten free, I dropped 30 lbs in a MONTH!!!  and I was literally a bag of bones underneath from not absorbing any nutrition.  It's taken me 5 years, but I've built back up muscle and bones and doing great at 64.

Think my Doctor told me I need to be back on it for 6 weeks once I get my appointment. 

That’s good to hear about the weight loss. Weight gain has been a problem for me over the last couple of years. Like you I just put it down to getting older, but still attempted to lose weight. It’s seemed like no matter what I did, I couldn’t lose anything, just stayed the same (when I wasn’t attempting to lose weight it fluctuated, leaning more towards gaining).

Glad to hear that you are doing good now.

[Scott Adams]

On 10/18/2020 at 3:42 AM, Clancy said:

Thank you for sharing this, I’m in exactly the same predicament as you. When I spoke to the appointments office at the gastro department at my local hospital, they stated there was at least a 3 month backlog on appointments as non urgent procedures had been suspended due to C-19 and they are now catching up. 

Your post, and subsequent helpful comments from other forum members, have helped me decide to call my GP tomorrow to discuss next steps as the thought of being in this much pain for at least another 3 months had filled me with despair. 

Thanks so much, and best of luck to you! 
 

 

Hi @Clancy, did you ever get your test done, and do you have results?

[Clancy]

9 hours ago, Scott Adams said:

Hi @Clancy, did you ever get your test done, and do you have results?

Hi Scott, funnily enough I had my endoscopy last Friday which was much quicker than I anticipated.

The initial poster prompted me to speak to my GP in October and also to join Ceoliac UK and make an appointment to speak to a dietitian as we were just on the brink of going into Lockdown 2 (were I had heard to Gastro Unit would be closed for non-emergencies for the duration of the lockdown) and also the waiting list indicator on the hospital waiting list put Gastro appointments as a min 27 week wait.

I really thought I might not have the procedure until next spring / summer so I had conversations with the GP and Dietitian to see what I could do in the meantime, especially as NICE has issues some specific guidance around Ceoliac Diagnosis during Covid and under some circumstances, a diagnosis might be given without the test.  At this point too, I was still on my usual gluten diet (so gluten with pretty much every meal).

The idea I presented in light of a potential long wait was to go gluten-free until my appointment came through next year, then reintroduce gluten 6 weeks prior to the appointment. Both the GP and dietitian advised against this, and suggested I cut my gluten intake down to the equivalent of 2 x slices of bread and a snack per day, and have them in the evening so I might be able to sleep through the worst of the side effects. This did help ease the discomfort, particularity in the mornings.

In the meantime, my GP wrote to the Gastro unit explaining the circumstances and if my appointment could be expedited. Very luckily for me, I was then given one ofthe first appointment available once the Gastro clinic reopened. 

The results indicated positive ceoliac serology: linear furrows and nodular mucosa duodenal bulb with flat appearing mucosa with notching, suggestive of ceoliac. 2 x biopsies were taken which I should get the results in 14 days, but the specialist said to switch over to gluten-free as in his opinion it was positive diagnosis. 

So I've been gluten-free for 4 days now and I can already feel a small improvement and my family have noticed a difference already - I have more colour in my face, I'm more alert in the evenings and I can tell my stomach isn't constantly noisy.

I'm not sure what happens next as I am waiting on a follow up appointment with my GP and I've been advised to have my flu and pneumonia jabs. 

I've made lots of changes to the kitchen to avoid cross contamination and my partner has also decided to eat mainly gluten-free at home too as its saves faffing with two different cooking prep. As we both went vegetarian 6 years ago which was a big change in our diet, I feel quite confident that we should be able to manage with the gluten-free transition too without too many hiccups (fingers crossed).
 

Scott, did you get yourself sorted out with an appointment? 

[Clancy]

Thanks for asking! I'm feeling much more optimistic than I did a few months ago! 🙂

[Scott Adams]

That's great to hear that you were able to get the appointment expedited, and now finally have your answer so you can now focus on your recovery. The gluten-free diet is easier now than ever, even though it can at times be a pain, especially if you travel and eat outside your home. 

Also, I was diagnosed many years ago, but @AlexInferno, please let us know how you're doing on your gluten-free diet? Do you really need the formal diagnosis?

[AlexInferno]

1 hour ago, Scott Adams said:

That's great to hear that you were able to get the appointment expedited, and now finally have your answer so you can now focus on your recovery. The gluten-free diet is easier now than ever, even though it can at times be a pain, especially if you travel and eat outside your home. 

Also, I was diagnosed many years ago, but @AlexInferno, please let us know how you're doing on your gluten-free diet? Do you really need the formal diagnosis?

Diet has been okay, been a bit difficult but it’s definitely helped with the symptoms. Dr suggested that I can probably ask to be referred to a dietitian if I feel I’m struggling. Still heard nothing about my appointment. The formal diagnosis isn’t really for me, but for my record. Recently had an appointment to something unrelated, (also at a a health centre as my normal drs had no appointments left so not my usual dr) and they asked about allergies and as soon as I mentioned possible coeliacs, they asked if I had the endoscopy and when I said I was waiting for it still, they then said it was self-diagnosed. And after that the dr didn’t take me serious.

[DJFL77I]

dietitians are worthless...    they'll tell you to stop eating gluten