Brother of a diagnosed coeliac, had terrible gut issues for longer than sibling...

[NotoriousPyro]

Hi all,

For a very long time, over 10 years I've had terrible stomach issues. My symptoms originally started with terrible heartburn and a quick feeling of fullness and that the food was "repeating" on me. I was often amazed how people could shove entire pizzas down their throat but it would take me a few hours to eat mine, only eating a few slices at a time - at most half of the pizza and the rest would be eaten over the next few hours. People would often comment how little I would eat but it was because I found that sometimes, and I wasn't sure what was causing it, I would get these symptoms particularly bad and of increasing severity, but they would begin around 30 mins to 2 hrs after eating the food. I started also getting progressively worse hayfever each year.

I went to the Drs who prescribed a short course of omeprazole and also performed some tests like H-pylori which all returned negative.

That short course turned into a long course over several years and also varied between lansoprazole and ranitidine. They all worked in so far as they stopped my heartburn, but I knew the long term implications of taking such a drug, and I felt like I needed to know why my stomach was behaving in such a way. I went back to the doctors again because the symptoms returned after a few days of stopping these medications. I had a coeliac blood test but I think at the time I'd decided to cut out grains and I went on a partially paleo diet (so not eating bread, cereal, etc) but was probably still getting exposed to gluten at the time from cross contamination. When they decided to do a scope down into my stomach and into the first part of the small bowel, all they found was an inflamed stomach lining, they said that the villi looked normal. So I felt confused and asked for answers but the doctors never seemed to have one... My GP kept refusing to re-test saying it all came back negative and to just keep taking the pills...

At this point I lost all faith in doctors...

A few years went by and I "managed" my symptoms so to speak with the remainder of the pills, and OTC meds, plus some days of suffering in agony with heartburn.

My symptoms eventually started getting worse after a couple of years, such as the morning after a spicy pizza - which I thought was normal for a spicy pizza - I would get absolutely terrible cramps and a feeling like I wasn't completely finished after going the toilet. I would often sit on the toilet in a foetal position trying to push the tiniest bit out... just for that relief.

I've also been fairly prone to infections, such as urine & fungal infections, ear infections, I was away on holiday about 5-10 years ago and I had to get a course of antibiotics for a urine infection and when I was a little lad I used to get them too. I'm not even that old either at the moment, only 33.

My sister who is a few years older than me, had also been having similar symptoms, but not so much heartburn which was my main symptom. She had symptoms that I only started having a little while later, like incontinence (mistaking a poop for a fart), bloating, etc. She was diagnosed a few years ago with coeliac which was diagnosed by biopsy... 

After a while my symptoms started getting pretty bad, less so with heartburn but more so with other problems like pale poo, really painful stomach cramps relieved only by sitting in foetal position/"assisting the poo" by pushing on my bowel on the firm bits from constipation / alternating diarrhoea, foul smelling, mucus/oily, sometimes I was even vomiting really acidic acrid vomit... the kind of stuff that makes your teeth feel really damaged... like battery acid.

My mother told me how she'd given me rusk when I was a few weeks old, which is a wheat based product. She said jokingly that it was probably the cause but in retrospect she probably didn't think when she was saying it, that there might be truth to it... I'm not sure if there's a connection?

I decided to cut out gluten about a year ago because I put 2 + 2 together with my sister's symptoms and diagnosis. I noticed an improvement over several months, no more heartburn (or very little), my poo returned to normal colour and consistency...

Over the last several months I started to get strange issues again, like my allergies and heartburn returning, bloating. I gradually started to get more and more ill, and even when I was standing barefoot on some concrete which wasn't even that cold, I noticed my feet had a slight blueish tinge to them... I have for the longest time had reynauds symptoms where my feet would get ice cold as would my hands, and environments which seemed to not bother others as much, really hurt my toes and fingers etc..

More recently I became pretty ill: I lost a lot of weight and fell down to 9.5 st, had pretty bad depression, sore & itchy bottom, poorly formed poo (they would be falling apart in the water), diarrhoea, fatigue, head fogginess, heartburn, bloating/cramping, headaches, yeast infection, angular cheilitis, strange red spotty rash appear on my palms and turn into a few sore red patches that looked similar to (but not as bad as) https://i0.wp.com/post.medicalnewstoday.com/wp-content/uploads/sites/3/2018/02/image-of-persons-hand-with-dyshidrotic-eczema-br-image-credit-eugene-alvin-villar-2008-br-1024x769.webp?w=1155&h=1734

I live with my parents and I discovered that my dad had been buying "Colmans lamb hotpot" which primary ingredient is "WHEAT" and also discovered he'd been buying the big bags of durum wheat pasta I've been eating the past several weeks.

I made the exact same pasta sauce again with gluten-free pasta and I did not have any symptoms like heartburn after eating it, unlike when I made it with the gluten-based pasta.

My dad was understandably apologetic and he didn't realise (he's not the brightest person and doesn't understand a lot of it).

When we discovered this, my mum and I went on a check through the rest of the items in the cupboard to find if there were any others he'd picked up, we threw out anything remaining. I decided to start taking a multivitamin containing all B-vits, Iron, Zinc, and some probiotics. Slowly my symptoms have been clearing up... my hands are almost back to normal and no real heartburn (only a little) for about 2 weeks...

Personally I am really hesitant about going the drs because I know they will want me to eat gluten to prove its the gluten... but surely this is enough evidence? I really don't want to test eating it again...

Surely my sister having coeliac and me being related w/ symptoms is enough?

[cristiana]

Hi Notorious and welcome to the forum,

It does indeed sound as if you have good grounds to suspect coeliac disease.  Noting your spelling of "coeliac", I suspect you may be in the UK?

The reason I ask is I am British, and there are some real advantages to having a coeliac diagnosis in this country from the NHS perspective.   If it is properly diagnosed, and these days it isn't always the case that an endoscopy is necessary - a blood test, if the results are convincing, may be enough - you should be assigned a nutritionalist, given yearly blood tests and consultant's appointments to check for deficiencies and that you are responding to a gluten-free diet, and are not developing any other issues, and you should also be put on a programme of bone density checks to make sure you aren't developing osteoporosis.  From memory, this scan is probably done between every 3-5 years.

But some people all the same choose not to go through the testing if the necessary gluten trial makes them feel very unwell.  I know one probable coeliac who decided not to go down this route, even though her brother was diagnosed with it.

Anyway, perhaps something to consider.

Cristiana

 

Edited July 12, 2021 by cristiana