Awaiting biopsy

[Abbie11]

Hello everyone,

A bit of background, I have really suffered with with digestive issues for a little over a year, been back and forth to the drs who have repeated diagnosis or haemorrhoids and IBS-M, but I’ve recently seen one doctor at the beginning of the year who listened to me, I was referred to have both a colonoscopy and endoscopy, however both looked clear and healthy, however, due to my everyday symptoms they decided to take a biopsy of my duodenum just to check for Celiac disease. My question is, would they have not seen inflammation prior to this on the endoscopy or if I’m being newly diagnosed would it not be seen to the eye and only via a microscope? 
 

My symptoms:

- A mix of constipation and diarrhoea daily.

- Loose stools containing a lot of undigested food daily. 

- A very itchy rash over my hands, arms and feet, no creams etc. seem to be working to stop this.  I would attach a picture however I’m not sure how to! 

- Lack of energy/completely drained and tired.

- Easy bruising (I am unsure if this is a symptom)

- I suffered massively with anxiety at the beginning of the year and have been put Sertraline which has helped this. 

- Diagnosed with Iron deficiency (with anemia). 
 

I feel extremely miserable all the time, my symptoms are really affecting my daily life, sorry to ramble on! How long do the biopsies take to come back, does anyone know? Furthermore, is the biopsy more accurate than a blood test for celiac disease? I have never had a blood test to rule this out - all other bloods were fine apart from iron and a slightly higher white blood count.

Thank you for reading!

Abbie 

[Abbie11]

Sorry that is supposed to say I have been diagnosed with iron deficiency WITHOUT anemia!

[trents]

Welcome to the forum, @Abbie11!

Inflammation and damage to the villous lining of the small bowel/duodenum/duodenum bulb can sometimes be seen during the endoscopy itself depending on how advanced the damage is, the resolution of the scope used and the experience of the one doing the scoping. But the microscopic analysis is more reliable. The turnaround time for results can vary a lot depending on where you live in the world and how stressed the healthcare system is but in the USA it is like 1 to 2 weeks. 

The biopsy is considered to be the gold standard of celiac disease diagnosis.

Can you clarify what you mean by having iron deficiency but not being anemic? Which iron tests were run and which test or tests showed low values? Do you have access to the results and can you post them?

[Abbie11]

Hi Trents,

Thanks for your reply. My ferritin level was extremely low but my red blood count was fine so the dr said I have iron deficiency without anemia. 

[trents]

Ferritin levels have to do with iron storage reserves. So, your hemoglobin was being kept up to snuff but doing so was depleting your iron store houses, as it were. Eventually, the stores would run out and you would start experiencing anemia. You could be in the beginning stages of celiac disease. It often takes 10 years or more from the onset of symptoms to get a diagnosis of celiac disease so you are ahead of the curve. 

Edited May 27, 2024 by trents

[Scott Adams]

Your symptoms certainly sounds like celiac disease, and I would request a celiac disease blood panel as well because not everyone performs or interprets the endoscopy/biopsies correctly. 

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

The itching could be dermatitis herpetiformis, which is a manifestation of celiac disease, and if you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful: