Gluten Free Guerrillas
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hi there everyone , i have had difficulty for 8 yrs , with glute , dairy. the dcts seem pretty useless & clueless, has anyone else experienced this ??? it has been self help , & experiments all the time , going to try fodmap diet again as i have been a week in constant pain it is depressing as i an a lady who enjoys going out, & socialising , bt,alas this prevents my going out

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Hi, I am assuming you have had the basic blood test TTGA & it was negative, hence no further referal to a gastro specialist for further tests.

If you know it is gluten that effects you, then yes stay off it regardless of the negative blood test as you may have ncgs - non coeliac gluten sensitivity. If you are saying that even without gluten & dairy you are still being bothered by something, then if you think what you have it is related to food, then going down to a basic diet like an auto immune paleo diet for a couple of months, then reintroducing groups of food to see if they effect you, may be the way to go. Sarah Ballyntyne does a very good auto immune book which helps explain the science behind this approach & there is a very good web site truly gluten free, run by Micki Rose which has loads of info on to help point you in the right direction, as well as access to tests if you want them.

I think an awful lot of us have difficulties with our GP's but still try to work with them, but the above may help you work out what food if any, is causing you issues & this knowledge will help your approach with your GP. Good luck


Hi, Without background info, it is difficult to determine your circumstances, but as your comments are similar to my own experiences, I thought I'd share with you how I have significantly improved my condition over the last 9 months. Mostly through my own actions, but with some help from medical professionals.

I was diagnosed with Coeliac Disease in 2012. My condition improved for 12 months on a gluten free diet. However, after that 12 months my health just seemed to go down hill. Gut problems, aches and pains. Every day I seemed to find a new food that 'affected me' in a negative way. About a year ago the pains got much worse, including bad knee pain and a severe frozen shoulder. Having exhausted the blood tests, looking for answers, I got a referral to a physio, and at my insistence to a nutritionist. Was put on the FODMAP diet, but got much worse within days, in desperation I found the Specific Carbohydrate Diet, and it has changed my life. Two weeks on the diet and I no longer needed the steroid injection for my shoulder. A month in and I was walking normally. Three months in I did a 10k walk. I can now run up the stairs. The diet is extreme, not everyone needs it, but I know that I do. If you are running out of options, I would encourage you to look into it and make an informed decision. Even if you only try it for a month and decide if it is right for you. I know how depressing it can be when nothing you try seems to be doing any good. Good Luck, and I hope you feel better soon.


thanks for scd info - thinking of giving it a try - did something similar off my own bat last year - cut out ALL carbs and sugars completely - worked brilliantly on my gut but got rather hungry and lost weight (I already do Best Bet diet to reduce impact of Multiple Sclerosis) and I am vegan for all the reasons


I know what you mean about feeling hungry, and losing weight, but it's worth it to get rid of the pain and feel much better. If you are going to try the diet I would recommend reading up on the SCD Diet, rather than just avoid all carbs, it's the complex carbs that are the problem, not the simple ones. Without the direction in the book and on the website it's a bit of a guessing game. Now I've been using the diet for the last 2 years I'm able to eat many things I thought I'd never be able to eat again. Good luck.


My husband was diognised with cealiac in October. He was worried about eating out. We have been to weatherspoons a few times. They have a few gluten free foods. But there is not a lot to choose from.

He can have chips from Mac Donalds and a burger if he takes his own bread cake.

We have found a gluten free fish on Tues and Thursday but to far from us.They do gluten free in East park in Hull. If go to family I take pasta with me. Some groups have got him a gluten free pie.


Hi there, I'd check out the coeliac map:


Poor you, I sympathise, I hate how I feel so restricted when I eat out....but....I have to say compared to a couple of years ago I think things are getting so much better so don't give up! Where do you live? I'm south of london and find that I have loads of great restaurants around here that are brilliant at offering gluten and dairy free options: Carluccios, Zizzi, Prezzo, Pizza Express, Caballo Lounge, Wagamama, Cote to name but a few. If you're interested and looking for help with restaurant reviews and/or recipes check out my blog at where I am blogging about my successes (and failures) trying to eat and cook exclusively gluten and dairy free (I have Hashimotos and IBS). Hope that it helps, good luck, Ax


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