Anxiety about going out

[Amayteach]

Hi guys,

I've been on this bumpy Coeliac ride for 6 nearly 7 months now and was diagnosed in November. I am enquiring about a rather odd question, but I thought I would ask.

Does anyone else have anxiety related to going out? I find that I am scared to leave the house in case I get 'caught out'. This relates for me back to a nasty experience at the start when I was 'caught out' and had to get to a loo asap in a public place. I found the experience so embarrassing and was just humiliated/traumatised by it.

If you do feel the same, how do you cope with it/get on?

I've got to the point where I literally don't leave the house for anything unless I have to.

Thanks.

[Hidden]

I'm sorry you are feeling like this, but i can understand why.

Was your emergency related to eating? I don't eat anything other than sealed gluten free food when out which reduces the problem. Social interaction is tricky for me as I get contaminated by airborne/ environmental gluten too.

I find glutenzyme pills taken every couple of hours if I'm visiting a 'normal' house helps, and I also carry Imodium for emergencies.

Please try to find a way not to get housebound- if you have to carry your own food your good friends will understand but it can be an uphill battle with elderly relatives.

[Fruitandnutcase]

Hello Amayteach, that's not an odd question at all. Have you thought about buying a RADAR key for public loos - that way you wouldn't have to wait in a queue, although not that you have that facility everywhere. I have a friend who has an app with a list of loos.

Think you can also get a card from somewhere - not sure where though - an IBS charity perhaps - that you can present in shops and hopefully get to use their staff toilet.

I had a friend who had that problem until quite recently and she always carried a large handbag with a change of undies. Not much fun but she was determined she wasn't ging Ito stay home all the time.

[Hidden]

Hi Amayteach, I take it from your post and previous post that you suffer from IBS regardless of being gf? So I would try 2 approaches. The first being diet and look into the foods that trigger IBS or the runs and food that come up all the time are fats, lactose and artificial sugars. And you could keep a food diary.

The 2nd approach is to get some Immodium and take one before going out knowing that you're going to be OK. The importance of this is it would help you build confidence in your self about being out and about. And then just carry immodium instants. Then you can tell yourself that you used to fear being caught short...as you can change how you see yourself.

So good luck as you can overcome this.

[Amayteach]

Thank you guys. I'm going to talk to my GP and see if I can have some mental help, as it is all in my head. It's just that my head seams to have a lot of power at the moment. Thank you for your ideas and I will definitely give them a go. It sounds like I've got myself into a bit of hole and its going to be tough to get out.

[Weeannie]

As you are so obviously aware of your condition now you won't be caught out again. I think we can all say that in the beginning we were all caught out. You just need to forget it and carry on normally just making sure you don't eat gluten. It's not scarey if you don't let it be scarey xx

[msglutenfreeuk]

I think there is also a link between gluten and anxiety. My naturopath mentioned it when I took my daughter to see her about an anxiety and I then looked at some studies about anxiety symptom improvement in celiac teenagers when they go gluten free. I definitively agree gluten can cause mental issues too.

Also I think it's very natural for anxiety to increase when you are diagnosed with a medical condition. I was diagnosed with ME 3.5 yrs ago and once I knew I developed anxiety, had panic attacks etc due to the worry - will I get better, what else is wrong with me etc etc. Doc gave me anti-depressants which made me worse - please avoid if you can - but I did have some cbt on the NHS which really helped with managing the anxiety

If your problem is gut related, changing your diet can help both gut issues and the anxiety. Have a look at the FODMAPS diet for IBS. I find Mark Hyman and Chris Kressner was useful sources of info, they are both American functional medicine doctors which means they consider the whole body/range of symptoms not just isolated issues like the NHS

Good luck and take care

[jmjhoh]

I was like this for a long time and it is about building your confidence again - if you havent eaten anything 'wrong' then you should be ok most of the time, but I still have days where I have to use a loo when out and I still hate it! Sometimes it is due to the anxiety of going out itself and sometimes it's because I am just having a bad day, as I suffer with IBS as well as CD then it can be difficult at times - but learning to have a positive mental attitude can help you overcome your anxiety, it will take time and some psychological support may help, and also go easy on yourself too, little by little things will improve

[Amayteach in reply to jmjhoh]

It's nice to hear from someone who gets it. Most people I have spoken to are just like you will be fine, I don't know why you are worried as you have nothing to worry about now. I know this may be true but it doesn't feel this way when I am trying to go out.

[margaret3]

The same here. Finally on gluten free diet I'm fine going to shops without running to the toilet. Recently went out to eat with friends and afterwards I wasn't well at all. I'm scared to go eat out as well. 100% understand why you scared to go out. Wish you all the best.

[Jacks]

If you are keeping to a GF diet and still experiencing uncontrolled bowel movements it would be worth looking at what you're eating. I still need to keep on top of how much fructose I consume as that's a catalyst. Lactose is another - it's a definite laxative for me. As others have said, get some Immodium (loperamide).

If you are doing everything and think you have another gut related disorder then see your GP about further investigations.

Private hypnotherapy might help if you think it is in your head.

[BronB]

I'm sorry you've had anxiety. I have too. I was diagnosed over a year ago but have been having panic attacks for about 2 years. Panic attacks are so awful, I wouldn't wish them on anyone!

It all started because I have very low ferritin iron (you'd need a blood test for diagnosis - don't take iron tablets without a doctor telling you to).

Low iron caused heart palpitations and all these panicky feelings started. It ended up with me not going anywhere without a panic attack so I stayed at home.

I had CBT with the NHS and I started running with a friend who also has anxiety. This has helped a lot and I am nearly back to normal - only the odd blip every now and then. Running is great for producing endorphins which help to combat anxiety. I was told that running produces more endorphins than medication for depression (not sure how true that is).

Having the flour mix on prescription from Juvela has helped a lot. The mix is fortified with nutrients and it makes things taste amazing too - just like normal!

It is difficult when you go out in public to eat. I have been glutened so many times. I am very sensitive. Well meaning friends try and make me gluten free things but they don't realise that their kitchens are covered in gluten. I have even been glutened at a 5 star hotel and they offered me shortbread for our journey home, 5 minutes after I made a complaint!

As my confidence has built up, I've spoken to more coeliacs and realised that i'm not on my own. It has helped me to feel bolder about having coeliac disease. I take my own food if I am unsure and I don't feel under pressure to eat what I don't feel happy about eating.

I hope you can feel better soon.

[Sabots]

hi there,

I found the problem about being out and being caught out was in the bad old days

when I ate foods with Gluten in them. So start by going out just a short time and know where the loo is and see if you're OK. If so go further next time and build up your confidence.

Try it and see.

good luck ,

les-sabots.com