Waiting for biopsy results..

[melf1905]

Hi, (UK based) 

I’m new the the forum & found you all recently. 
I have had issues with my digestive system for around 20yrs now, had tests before & was diagnosed as IBS. 
Last summer I returned from holiday with the worst tummy troubles, very frequent toilet visits, pain, bloating & very scared of eating. I had faecal calprotectin test done & this returned a 1150 result (normal under 50) this was repeated within 2 weeks & had reduced to 753, however still triggered an urgent colonoscopy. I had this done which was negative both on scope & biopsies for IBD. (No infections or parasites noted on either sample before referral) Faecal calprotectin now returned to 28. 

The initial blood tests in June gave a tTg result of 7.8.. I also had a very low folate level & had started on folic acid (this has been a problem before with no investigations, as well as low iron & borderline B12) 

Whilst I was waiting for my consultation the gastro consultant suggested to my GP that I trialed some sachets for bile acid malabsorption, I had positive reaction to these & it started to allow me to eat a little more. 

I spoke to the gastro consultant in Nov 22 & after discussion we agreed to repeat blood tests along with the SeHCAT test. 

I had the SeHCAT in Jan 23 & this was positive so I am continuing with the sachets. 

During this time they also wrote to report that my tTg had now returned at 25 (0-20 considered negative) & therefore was referred for endoscopy.

I had this 3 weeks ago & now waiting for results. I have largely taken gluten out of my diet now with notable results. 
I’m a little nervous that the biopsy will come back negative & I’ll feel I’m back to square one. 
Symptoms/medical history: 

- bloating 

- diarrhoea (& sometimes constipated) 

- excess gas 

- frequent lower right side pain when needing the toilet 

- low folate 

- under active thyroid 

- migraines (seem to have reduced since eating no/less gluten) 

- 2 x miscarriages (16wks & 9wks) 

- Asthma 

Not sure what if any questions I’m even asking but feel it can often help to write it all down! 

Thanks for reading this far, hope you’re having a nice weekend 🙌🏻

[trents]

Welcome to the forum, melf1905!

It is not clear to me from your narrative if you had already discontinued gluten before the endoscopy/biopsy. If you already had discontinued gluten before the endoscopy/biopsy, how much time elapsed between commencing a gluten free diet and the endoscopy/biopsy?

[melf1905]

Hi trents, 

Apologies I continued to eat gluten until after my endoscopy, 

🙂

[trents]

5 minutes ago, melf1905 said:

Hi trents, 

Apologies I continued to eat gluten until after my endoscopy, 

🙂

Then the biopsy results would not have been compromised.

Your tTG-IGA score the second time around is a weak positive and reducing or eliminating gluten from you diet seems to have brought improvement in your symptoms. If the biopsy is negative, I would suspect you have NCGS (Non Celiac Gluten Sensitivity) for which there is no test currently available. But it shares many of the same symptoms with celiac disease, is 10x more common and some experts feel it can be a precursor to celiac disease. A diagnosis of NCGS requires that celiac disease first be ruled out. Both require a commitment to total abstinence from gluten.

You might also look into genetic testing to see if you have the potential for celiac disease.

Keep us posted on biopsy results.

In the meantime, this might be helpful:

 

[melf1905]

Thanks so much for responding, hoping results will be back this week 🤞🏼

[Jane07]

Hi Melf905

how was your endoscopy was it painful what did you eat the day before.  I have one next week .

I stop gluten beginning of February 

[melf1905]

Hi Jane07

It wasn’t too terrible, I had sedation this time which made it a little easier, I had one in 2014 without & much prefer the sedation! 
I was told not to stop eating gluten until after the procedure though, do they know you have stopped or is yours not for diagnosis? 

[Jane07]

30 minutes ago, melf1905 said:

Hi Jane07

It wasn’t too terrible, I had sedation this time which made it a little easier, I had one in 2014 without & much prefer the sedation! 
I was told not to stop eating gluten until after the procedure though, do they know you have stopped or is yours not for diagnosis? 

Hi Melf905 

I know you are suppose to be on gluten my ttg was pretty high they just wanted the endoscopy which is really hard for me . I have anxiety doing all these tests are really hard on me. Do they put you to sleep with the sedation 

the one doctor know that  I stop gluten in February since then I do feel  a bit better I lost a lot of weight very scary it’s hard with my diet .

 I wish there a training session going gluten free somewhere it’s a lot of work.  Im looking at books 
 

I hope everything works out for you 

[trents]

Generally speaking, they use what's called "conscious sedation" for an endoscopy.

[Jane07]

Oh really you are awake can they put you out I’m feeling so nervous about this I’m scared .

Trents Did you have an endoscopy if so what was your experience like I’m worried 😞

[trents]

Yes, I have had three endoscopies. There is no discomfort and no gagging. You'll be pleasantly surprised when it's over and you will wonder why you go so anxious about it beforehand.

They use conscious sedation because it's safer than being put all the way under.

[Jane07]

Thanks for your input what did you eat the day before and day off. Will I be really sore after 😞 will they take a biopsy of my small intestine or does it depends. I been looking for info online. Sorry for all the question.

Do you have Celiac Disease Trents

[trents]

I don't remember what I ate the day before. It really doesn't make any difference as long as you don't eat anything within 8 hr. of the procedure and I believe you can have clear liquids within about three hours of the procedure. They just want your tummy and small bowel to be empty of any solid matter and not stained by red or dark liquids.

After the procedure is done you may or may not have a bit of a scratchy throat for part of that day.

You have all the information you need and there is no more to be said. You are beginning to ask questions you have already asked in this thread and gotten answers to. Maybe you should go back and reread it.

[trents]

You will experience no soreness in your small intestine from the biopsy. Get some sleep.