Waiting for gastro referral

[HarrietP]

Hi 😊

I am 23 and have had positive serology for coeliac disease and am also anaemic, I am based in the UK so am with the NHS, and am waiting for an appointment with gastroenterology at the hospital.

I had my initial blood tests in March and then had a follow up with my GP at the end of April and am still waiting to get an appointment for further tests.

My symptoms have been going on for over a year and I have a terrible rash on my scalp which a dermatologist over a year ago thought was seborrheic dermatitis, but I do think now it could be DH? It blisters and is red, flaky and very itchy. I am also on the toilet multiple times a day at this point with loose stools sometimes with blood and have other gut symptoms.
 

I just wondered how long other people’s referrals to gastro have taken and what I could do to manage symptoms, as I’ve been told to carry on eating gluten until I see gastro in case of biopsy.
 

Thanks 😊 

[cristiana]

Hi Harriet

Welcome to the forum, although I'm sorry you are suffering these symptoms. 

If your doctor has ordered an endoscopy, hopefully the following will help you manage your symptoms better:-

Changing Iron Supplements: I too had blood, and I was told it was fissures.  In fact things improved dramatically before going gluten free when I changed iron supplement - it was found the heavy duty iron supplements I was originally prescribed were making the diarrhea I already had much worse, and giving me stomach pain and wind.  Are you taking iron at the moment?  If so, what type?  You may wish to see if your doctor can prescribe something a bit gentler.  I found ferrous gluconate much easier to tolerate, or Floravital.

Reduce Lactose Consumption:  Milk products can make diarrhea worse if your gut is badly damaged because the villi in your gut will be unable to digest lactose.  This is usually a temporary thing and should get better when your gut heals.

Eat enough gluten - but not too much: Lastly, although you need to ensure you eat two slices of normal gluten containing bread (or the equivalent) before your test, don't feel you have to overdo it. 

In my own case I made sure that if I did have to eat gluten, it might as well be things I would miss one day if I was diagnosed, so I ate a lot of Penguin biscuits and Weetabix prior to my tests!

My endoscopy was quite quick, I think two or three weeks, because I decided to go private.  If you can afford this, it might hurry things along but it would be worth trying to find out what the waiting list is at your local hospital.  It might not be too different from a private referral, hospitals vary enormously.  Perhaps if you ring gastroenterology maybe the consultant's support staff can give some sort of idea? 

Cristiana

 

[HarrietP]

46 minutes ago, cristiana said:

Hi Harriet

Welcome to the forum, although I'm sorry you are suffering these symptoms. 

If your doctor has ordered an endoscopy, hopefully the following will help you manage your symptoms better:-

Changing Iron Supplements: I too had blood, and I was told it was fissures.  In fact things improved dramatically before going gluten free when I changed iron supplement - it was found the heavy duty iron supplements I was originally prescribed were making the diarrhea I already had much worse, and giving me stomach pain and wind.  Are you taking iron at the moment?  If so, what type?  You may wish to see if your doctor can prescribe something a bit gentler.  I found ferrous gluconate much easier to tolerate, or Floravital.

Reduce Lactose Consumption:  Milk products can make diarrhea worse if your gut is badly damaged because the villi in your gut will be unable to digest lactose.  This is usually a temporary thing and should get better when your gut heals.

Eat enough gluten - but not too much: Lastly, although you need to ensure you eat two slices of normal gluten containing bread (or the equivalent) before your test, don't feel you have to overdo it. 

In my own case I made sure that if I did have to eat gluten, it might as well be things I would miss one day if I was diagnosed, so I ate a lot of Penguin biscuits and Weetabix prior to my tests!

My endoscopy was quite quick, I think two or three weeks, because I decided to go private.  If you can afford this, it might hurry things along but it would be worth trying to find out what the waiting list is at your local hospital.  It might not be too different from a private referral, hospitals vary enormously.  Perhaps if you ring gastroenterology maybe the consultant's support staff can give some sort of idea? 

Cristiana

 

Thank you for your response Cristiana, I am taking iron tablets, ferrous fumarate 210mg, I have been taking them for nearly a month now since I last saw my GP, so maybe I will ask her if I can change them?

I have noticed that I am sensitive to dairy particularly milk or milky drinks like lattes and hot chocolates, so I am trying to avoid when I can but I am also vegetarian so this can be a little bit difficult at times.

Ive tried speaking to my auntie as two of my cousins are diagnosed coeliac and one ulcerative colitis as well and she said I should ring the hospital. I was just worried as the letter I received said to wait until mid June and only to ring if I hadn’t gotten an appointment. 
 

The GP did say during my checkup that I do have piles so that’s probably what’s causing the bleeding, I’m trying to use anusol cream and wet toilet wipes to ease the bleeding when I can. 
 

Fingers crossed the wait won’t be much longer as it’s a miserable existence haha. Thanks again.

[cristiana]

You are more than welcome.   When I read your story it could have been describing my own experience.  My GP spotted a fissure but you may have one a bit "further up" which s/he couldn't see.   It was amazing the amount of bleeding it caused.

Yes, my GP put me on the same iron they are giving you and it definitely made my diarrhea worse (although my iron did go up!).   

She told me she had taken Floradix (Floravital is the gluten-free version) when she was pregnant and it was much gentler on her stomach, so she then suggested that.  But then another GP, the one that diagnosed me, said to me to take Ferrous Gluconate and gave me a tip - I was to take the tablets first thing the morning with a glass of water, an hour before I ate.  That really seemed to sort things out.  It seems counterintuitive to me to take iron pills on an empty stomach if one has stomach issues caused by iron, but perhaps because it was such a gentle supplement it worked?

Re: dairy, you could try buying lactose free perhaps for a while?  That might help.

In my own case I could still eat reasonable amounts of Cheddar, even when my dairy tolerance was at its worse, as it was explained to me that Cheddar is low in lactose.

https://www.healthline.com/nutrition/dairy-foods-low-in-lactose#:~:text=Cheeses that are low in,by people with lactose intolerance.

Take care.

Cristiana

 

Edited May 20, 2023 by cristiana

[Wheatwacked]

Hi Harriet. 

Vegetarians can have difficulty getting enouh B12 and insufficient B12 can lead to anemia.

     Do You Have a Vitamin B12 Deficiency?     "One of the reasons why primates and some other animals eat their feces is to aid in absorption of the B12 they produce in their lower GI tract." 

Only 10% eat enough liver eggs and beef to get sufficient choline to support your gall bladder.  Gall bladder disease will present with your symptoms.

Could we be overlooking a potential choline crisis in the United Kingdom?

Celiac Disease is a disease of malabsorption. The small intestine is damaged and even if you are eating enough of the vitamins and minerals it is only partially absorbed.

Low or insufficient vitamin D is ubiquitous in Celiac Disease and in fact practically every disease.  Especially in the northern climes.

Vitamin D and inflammatory diseases

     benefits of vitamin D    He referenced various studies that have shown benefits of vitamin D on reduced risk for metabolic diseases, cancer, infectious diseases, autoimmune diseases, CV diseases, fractures, congestive heart failure and periodontal disease, to name a few. 

• A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;
• Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;
• Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;
•