I am new to all of this and struggling a bit. I am in the process of being diagnosed. I had abdominal pain in various places for about 6 months, with varying bowel movements (sorry TMI!) I Have a family history of inflammatory bowel disease so went to the Gp.
We did various tests in which the stool sample was positive for calprotectin (inflammatory marker - usually indicative of IBD) went to the gastroenterologist who said the bloods for coeliac had been missed, had those and my TTG IGA came back as positive.
I was referred for a gastroscopy which showed the duodenum as being slightly atrophic looking and they have taken biopsies.
This is where I am at now, the waiting game. I am guessing I have coeliac from the atrophy seen, so have been *trying* to go gluten free (if anything in preparation).
Both my fiance and I are in vaguely medical professions so know about the anatomy and physiology of it, however he does not really understand the psychological aspect of it, I'm struggling with the not quite knowing what's going on.
Any advice or support would be lovely, thanks x
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Megan929
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Hi Megan929, firstly what you are feeling is natural and it is a steep learning curve at first but soon it becomes second nature as you learn to look at what you can eat rather than just being aware of what you have to avoid.
Now the psychological impact of being a coeliac interests me as we have the importance of a strict gluten free diet rammed down our necks but are left to deal with the psychological impact ourselves. So here's something to bear in mind, we all fear food and being made ill by food prepared by others especially when out and about now this is not neurosis it is self preservation, so don't give yourself a hard time for feeling this. Here's a post I made on GFG about this:
The best advice I can give you is to look at all the foods from around the world that are naturally gluten free and do a web search for where you live and gluten free to see whats available on your door step. And take it one day and one meal at a time. I'd also try and eat as much naturally gluten free foods as possible and make as many meals as you can from scratch.
Now comes the good news. hopefully you will start to feel better on a gf diet and that makes it all worthwhile.
So well done for joining us and any more questions/queries then you ask away and have a rant if you want to, as you're amongst friends on here as we 'KNOW' what you're going through.
Before my diagnosis I ate a lot of rubbish and over the years have increasingly realised my 'new' caveman like diet is not only gluten free, but will probably help me live a longer and healthier life. This transition has left me realising how much the food industry mess around with our food in the pusuit of profit and to the detriment of a healthy diet. The spin off benefit has been my family have also joined my journey and are more aware of the good and bad types of diet.
A decade or so ago life as a coeliac was very different to today. Most food shops and restaurants now cater for coeliacs, so the challange isn't as great as it once was.
So the future may not be gloomy as you fear and it may surprise you to know that on balance being a coeliac is, for me, more positive than negative condition. At least I know what's wrong and how to put it right.
Hang on in there, be patient with your fiance and good luck. Oh and use and abuse 'us' on GFG. There's lots of experience to tap into.
I remember very well the psychological impact it had on me, especially at first. Like you seem to be doing, I didn't wait for confirmation after my biopsies to go gluten free - I just wanted to start feeling better sooner rather than later. It also meant that I retained more control over the decision - it became my choice when I went GF rather than something that was imposed on me by the medical profession. I knew I had nothing to lose; if the biopsies had showed nothing, then I would've just gone back to eating gluten.
Having to undergo such a lifestyle change was tough in the beginning. I had to keep telling everyone around me what I could and couldn't eat - (repeatedly, because they were apt to forget). At times it got embarrassing, particularly when trying to eat out.
After about three months, I realised I was still struggling and decided to make use of a counselling service my employer had for it's employees.
I would encourage you to consider doing the same if you can, because I found it a very useful process. It allowed me to express how I was feeling without upsetting any friends, family or colleagues; and began the process of getting my head around the situation I now found myself in.
Looking back, it was almost like a grieving process that I went through. I've permanently lost the ability to eat many foods other people consider normal; and to eat out so casually. Eating is often such a social event and also often used as a way of showing affection. These days my friends understand that it is better asking me to go out for a drink instead – it's so much easier for me and a lot less risky to my health; but in the beginning I felt bad about them having to make changes on my account.
However; despite what I've said, don't despair! The trade-off definitely is worth it long-term, if you persist with the GF diet. Yes, I've had to give up certain foods - but I feel sooo much better than I did back then. Would I ever trade that for a doughnut (etc) again - no chance!
By the way, if your diagnosis is confirmed, it's worth investigating the foods available on prescription (in most areas of the UK) to see if they suit your needs.
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