Gluten Free Guerrillas
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Another result

Another result with sticking to my guns and not doing what the consultant asked me to. Eat wheat and gluten for 4 months. Have been self managing now for 15 months. Had some back up from my dr but as we only have one Dr at our surgery the rest are now locus. So far I am on B12 injections and folic acid for life. Vit D for not sure how long as these are all what my body is not absorbing. Consultant very pleased with my self management and realises how serious I have taken this all. Just been to see him didn't ask me to eat the damn stuff and is now going one step further and referring me for the dexa scan. The only thing I wasn't sure if I like is that he was really pleased that I have put a stone in weight back on. Haha. Next thing to tackle is my dairy issue which does seem to be getting worse but he believes that I will work this one out.

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Go Tetloww!

It's great to hear that you are making such good progress.

If my memory serves me correctly I was given 20,000 IU of Vit D twice a week for 12 weeks by the Consultant endocrinologist. That was sufficient to take me from having a severe deficiency to it being sky high! I suspect you may be given something similar.

Cut the dairy out!!! - sorry if this sounds stupid but if you know it's making you bad, why are you continuing to eat it? At the moment you sounds like you definitely need to have a complete break from it for a few months. Maybe in the future you will be able to reintroduce small quantities. I felt so much better after I took dairy totally out of my diet. Unfortunately for me, reintroducing it didn't go so well - so I went back to being 100% dairy free.

Very best wishes on the path to wellness.


I'm already on the vit D. From blood test result. Two daily for ten days the one weekly for 10 weeks. I have 4 tablets left. I'm just really happy that he hasn't asked me to to come off my gluten free diet. I'm not sure yet about dairy. But now that I'm consistent with gluten free and it is part of my daily life without stressing about it it will be so much easier to tackle the other things. And the consultant has now requested for the dexa scan without me having a celiac diagnosis and is now finally listening to me. So relieved. My. Symptoms when I eat gluten effect my top half of my body and make it impossible for me to eat the other effects the bottom right side of my body and gives me the sharp stabbing stitch pain that makes it hard to walk but doesn't last as long as the other when i have eaten just plain basic food for a few days. Very strange but deffo getting to work Moore out as time goes by. Thanks for all your support its been a long road but am over half way down it.


Its not good to hear all of you having Battles with your GP's and consultants, when will they take notice of us, and take on board that we genuinely do get really ill when eating these foods, that are not good for our bodies....Gluten Free diets are not bad, we can eat all foods that are natural and not processed I often say I can eat most things as long as they are not Processed. Vit D deficiencies usually sorts itself out once a GF diet is adhered to. A Dexa Scan is really only a good idea if you have not been on the Pill or HRT otherwise You will have been covered for loss of bone density by these hormones ---- Or that is what my consultant told me.....My consultant I might add that was Private...not that we are Rich just not getting anywhere with the NHS doctors and I was getting worse by the day.....Within 3 weeks of not eating Gluten I felt on top of the world....took a bit longer to really feel the benefit...Still have little slip ups from time to last night Went out for a meal and although I believed it was truly GF I asked for the Chef to be cautious on the Dairy....Mmmm So why did I have to stay in the bathroom over half hour when we got back...Oh well maybe thats one meal that wont go on my HIps. Cheers

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Hi jennsp I react like that to spicy food. Gluten food stops me going to the toilet completely and I end up impacted with severe upper abdomen pain and I completely lose my mind. Takes me about 10 days to get back right. Dairy bloated me and gives me lower and pain like appendicitis. Easier to get back on track tho. It's all about getting the balance I find. But constantly having to think and plan. Just had bloods done again to check my irons and vit d levels. Then finally going on 6 months blood test instead of the 6 weeks check I've been having. They have been a good way of monitoring what my body copes with and what it doesn't. But another long process it has been. And u are right it is ridiculous what people have to go through to get the correct care. I refuse to eat it. Have not been diagnosed but my consultant has finally seen the light and following me up how he should do. Take care xx

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