My Story.

[robinamicrowave]

Hi everyone, as you can tell from my post count I'm totally new to the forum. The best place to start with anything new is the beginning, so that's what I'm going to do - and in doing so, I was hoping for some advice, obviously (why else do we join other than to give and take advice?) I'm 19-years-old, and I was diagnosed as a coeliac in August 2013, but have been following a gluten free diet since September 2012. 

As a child, I'd always been described by my parents as having a "dodgy stomach". I was off school maybe once or twice a year with unexplained diarrhea for a day or two, and eating out at Indian restaurants always gave me terrible gas the next day - but apart from that I was like any normal person in the world. The only thing unusual about my life was that half of my diet was gluten free because my mum was an undiagnosed coeliac for around 20 years before deciding to finally research her symptoms and go gluten free in 2002. If anything, that perhaps bought me a few years of having a normal diet. 

In July and August 2012 my life was awful. Sat on toilets, mapping out the locations of toilets in public places - something was wrong. Finally my mum broke the news to me that coeliac disease was in fact hereditary and that cutting gluten out of my diet would be worth a go. I did as instructed and my problems disappeared; I was gluten free but I was able to live my life like normal. I went out to an Indian restaurant and woke up the next day as though I'd never been at all, probably because I hadn't ordered a naan bread like normal.

This was the case until Christmas 2012 when I started to have similar symptoms to the ones that pointed to coeliac, yet something was different: the reaction felt sudden, causing me to have urgent diarrhea that passed as quickly as it had arrived. My mum had already cut dairy out of her diet, so I followed suit. Again, my symptoms improved and my life returned to normal, only this time I was gluten and dairy free. 

But then I started having similar symptoms again, so I went to a doctor this time. They told me I had IBS and put me on peppermint oil and Loperamide Hydrochloride. This combination of pill-taking, being gluten and dairy free worked perfectly until I started smelling peppermint in yet more urgent diarrhea. I cut out the peppermint oil that had handed me my life back but continued taking Loperamide Hydrochloride, thinking that I would carry on as I had done - as a normal person. 

This is now around May 2013.  By this point I'd cut out egg too, as some gluten free bread that I'd been having was causing me to be ill. When I looked up the list of intolerances in the ingredients, EGG screamed out to me. 

I had noticed that even on a good day my stools were pale, poorly formed and often easily broken up by the water in the toilet. This would normally alternate between getting better or worse depending on the day, regardless of what I'd eaten. I was finding it hard to live like this. The Loperamide was helping, for sure, but I was nowhere near cured.

This made me apprehensive about my family holiday to the USA. "The land of wheat and corn" some called it, surely the land of toilet trips and death for me? Well, the total opposite happened. My god, you Americans have some incredible gluten free brands: Enjoy Life Foods, UDI's Gluten Free, a whole host of things. My stools were solid, brown, sinking and flushing like there was no tomorrow. They were coming once a day in the morning after breakfast, I was able to have the holiday of a lifetime and I came back to the UK inspired. It was the best I'd felt in around 2 years.

I started drinking filtered, bottled water at home, cutting out all sweets and candies (other than Mike & Ike's) and generally things improved. My stools did return to their paler, breakable state eventually but the diarrhea was a thing of the past. I was able to introduce egg back into my diet because it hadn't caused me to be ill despite digesting it in the USA, and I was on the road to what I thought was recovery.

But then came the news that I had to be diagnosed for coeliacs. August 2013 was my month to do it. The first night I thought that if I was going to introduce wheat and gluten again, I may as well introduce dairy and be ill anyway. Wrong. The first night ranks up there with the worst of my life. There was no diarrhea - only vomit, nausea and pain until 02:00am. So I carried on my gluten challenge without dairy, and although I never left my flat through fear of being ill in public, I was the best I'd been since my trip to the US and had no diarrhea or breakable stools in the four weeks I spent on the challenge.

I went for my endoscopy, (sedated, of course, man that felt good) and while they showed that I did indeed have coeliacs disease, I was told I had gastritis too. So I took the Omeprazole for three weeks and things improved during that time. I also went for a lactose intolerance test that came back negative. As confusing as that was, I thought I was on the road to recovery and my own version of normality. 

This was October 2013.

But ever since coming off the treatment for gastritis, although I am generally better than I was 6 months ago, my life seems to be spent with a bloated, hard, bubbling stomach and an inability to digest more than three meals a day and the occasional snack (Nakd bar, gluten-free/DF chocolate bar). If I do, it's off to the bathroom again for more uncomfortable passing of stools. 

I'm also losing a lot of weight, I think I've lost around 14 lbs (1 stone) since going dairy free, and I currently weigh around 125 lbs (8 stone 9 lbs), and I'm not showing signs of gaining weight. I'm still taking Loperamide but I'm now waking up to the fact that two Loperamide tablets a day is only preventing me from having chronic diarrhea caused by something other than gluten, or dairy, or egg, or whatever.

My mum thinks I have a problem with sulfites (sulphites), which may be worth looking in to for those of you who can't explain why they're still ill despite sticking to all the guidelines possible, which means that I'll always have this problem. This causes me to have off days when I react to things such as sugar, or when I eat too much of something that has sulphite containing ingredients, and this just seems like yet another thing on top of gluten, wheat, dairy (not lactose apparently), things like sorbitol. My diet is restricted beyond belief and I still can't quite move on.

It upsets me deeply sometimes to the point where I see the rest of my life as being totally pointless, which is only really helped through the fact that my mum seems to have the same problems as I do - as well as the same symptoms - and that my girlfriend is so helpful and understanding when it comes to my problems. She often calms me down if the "off day" I'm having is just in my head. 

But I don't know where to turn. I'm 19, and there's no cure for anything I have wrong with me, which means I'm going to spend the rest of my life not being able to enjoy it as much as I can. I understand that if I were to look around a room at 100 people and know of all their insecurities and health problems, I'd choose my problems again ten times over, but I've reached my wits end. 

I go for more appointments with more doctors in the start of 2014. Let's hope something sorts itself out, and I hope that with my sulphite intolerance suggestion that I've helped some people out with regards to their symptoms.

 

[LauraTX]

Thank you for sharing your story with us, and welcome to the forum!  There is a plethora of information here and many people with similar stories and issues.  I hope we are able to help you, and that you are able to find out more answers with the new year.  

[cyclinglady]

Wow!  I'm sorry to hear that you feeling so bad!  

 

Have you researched all the possible side effects from the meds you were prescribed?  Have you tried just eating whole foods (nothing commercially processed)?  Kept a food diary?  Considered a rotational diet?  

 

If you have a food intolerance, diarrhea is one way your body's telling you that it doesn't like what you're eating.  I wouldn't take a drug to stop it.  By keeping a journal, you may be able to better figure out offending foods, things causing you stress, etc.  

 

You didn't say how much damage your biopsy showed, but perhaps doing the challenge caused even more damage to your intestinal tract.  It is only a few months.  It can take years to heal even adhering to a gluten free diet.  But, you are young.  So, I imagine you'll spring back much faster.  

 

Search this forum  for more ideas and consider taking supplements and probiotics to help the healing process.  

 

I can relate to allergies and intolerances.  I can't eat mushrooms, eggs (okay in baked goods), milk (whey and casein), nuts, garlic/onions, but I work around them.  

 

Take care!