Any help/advice appreciated

[Chris21]

Firstly thank you to anyone that gives me any advice here, I am extremely grateful to have found this site. Secondly I am from the UK so this may make a difference in determining your responses. 

I'm currently being assessed for many different bowel, stomach etc...related conditions. But my current symptoms leads me to almost being convinced its celiac disease (without any medical confirmation just yet) 

For a number of years I've suffered with diarrhea, I'd usually go to toilet 3-4 times a day and stools were very loose and foul smelling, more than usual stool smells. Being slightly embarrassed, anxious and male I ignored this as it wasn't really causing me any more issues. However this has changed in the last 6 weeks and changed quite dramatically.

My symptoms have developed to severe cramping/abdominal pain, this varies for high up/middle of my stomach, but also goes to my sides especially the left side. Also I tend to bloat out quite a lot and despite perhaps being a bit of overweight I'm certainly not obese. Furthermore, I can be quite gassy. These symptoms alone got me concerned so I went to see my doctor who arranged some blood tests. Following on from these blood tests other symptoms developed including extreme tiredness and fatigue (slept a couple of nights in a row 16 hours) and just generally feeling terribly ill. My doctor called me in and said something about having a folic acid deficiency and I'm now taking folic acid tablets to rectify this.

Since then I've been to see a specialist (Monday actually) who examined me and has also been great in trying to get to the bottom of my problem. He's immediately sent me for a blood test for celiac disease (also done Monday) and to provide a stool sample, he was quite surprised this hadn't been done yet. Also he's booked me an ultrasound for tomorrow, and I'm waiting for dates for a colonoscopy and endoscopy, both of which I am dreading if I need to have them done.

Of all the potential conditions it could be (too much googling I know) Celiac to me at least seems to be the most obvious given the diarrhea, bloating, gas, severe cramps, abdominal pain, folic acid deficiency. I know some of these symptoms point to other conditions, but not maybe as much as Celiac. Another symptom actually is how ill I've felt in the past after eating pastry, but again I know this doesn't definitely mean Celiac.

I guess what I'm asking for advice and help about is whether I am right to strongly suspect Celiac disease? I know I just need to be patient and wait for my blood test results and a endoscopy, but in all honesty this waiting around is horrible. Every day is really hard to get through and I'm feeling so ill. I know I can't gluten free without at least some blood test confirmation, but it almost seems crazy that you have to go through all of this waiting for tests and camera put in you, when in reality if it is Celiac I could just stop gluten and feel better hopefully.

I'm quite strong minded person and really try to be strong mentally, but this is not exactly worrying me but the constant ill feeling and waiting time is a real struggle. I know people wait way way longer to get to the bottom of it too.

Anyway please give me any advice or encouragement it would be greatly appreciated or even potential other conditions.  

[TrainInVain]

I got diagnosed with Celiac 2.5 months ago. I dreaded having the colonoscopy and the prep for it is horrible, but you will feel much better and have peace of mind after you get it out of the way. The GI I saw put me to sleep and I don't remember a thing after the GI asked me to raise my head to put the bite guard in for the upper endoscopy.

This is just my personal opinion, but I would want to know if its Celiac because of the increased chance of having other autoimmune diseases and how it might relate to whats in your family history. And it will also be helpful to eliminate Celiac from the equation if you are having non gluten allergies or if its IBS or Chrons.

[GFinDC]

Hi Chris,

It sounds like celiac to me.  It is worth staying gluten and doing the endoscopy / colonoscopy before going gluten-free.  Right now before you go gluten-free is the best chance of being diagnosed correctly.  Going off gluten reduces the antibodies the tests measure and causes inaccurate results.

The endoscopy is important because they take 4 to 6 biopsy samples of the small intestine lining.  They check those samples for damage characteristic of celiac disease.

You can reduce the amount of gluten in the meantime to something like one slice of regular bread a day.  That should be plenty to keep the antibodies active.

You could also cut of all dairy for a while and see if that helps your symptoms.  Celiac damage makes it hard to digest milk sugar in dairy.

[Chris21]

Hi guys thank you for your responses, really helpful.

Guess I just need wait and see really. Had an ultrasound today just as another test for other problems, but they was all fine so that probably rules out some things. Took my stool sample in today too and luckily have been given a phone number for my doctors assistant who I will call early next week for my blood (celiac) test and stool test.

I'd have thought I'd at least receive some kind of indication from those tests surely? Especially the stool if it isn't celiac.

[Chris21]

I must also add that I’ve developed an ache in my left testicle? Not sure if that’s relatable at all? Or something else 

[Chris21]

So I went 3 days unintentionally without eating bread, just didn’t fall into my diet. Anyway yesterday I had 4 slices across the day and I’ve been so so ill since? Same symptoms as before but even worse. Feels like my body is shutting down without wanting to sound too dramatic 

Can’t be coincidence that surely? Eat bread after 3 days and feel horrendous. Trying to find out my blood test results today as I went for them well over a week a go, thought I’d have been called though. I have an endoscopy booked for Tuesday 9th October so I know I need to keep eating gluten but it’s making me very unwell