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Mum Needs Help/advice

Faery Light

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Faery Light Newbie
Faery Light
Posted

I am so pleased to have found your site...

In brief - My 6yr old daughter has had tummy aches, diarrahoea, sickness for what seems like forever. Later she had also had constant other problems with mouth ulcers, poor hair growth, joint pains.....I finally went to see my herbalist, he was wonderful and suggested gluten was most likely the problem. The results have been amazing, No tummy aches, no sickness and finally normal poo! yipee. My problem now is that (we live in the UK) because i do not want her to have to go through the discomfort of a biopsy and then on top of that have to eat gluten again and to make her ill again we are unable to get any help or advice regarding diet and food lists... Has anyone else not had a biopsy and then cut out gluten to be better? and does anyone know of how to get hold of a list/handbook of safe foods.

My daughter is so much happier, because its been a rough journey for her and she is so happy not to be suffering anymore.

It does make me cross that the medical profession will not help unless we have the biopsy, for me and her the results speak for themselves.

Thanks

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ravenwoodglass Mentor
ravenwoodglass
Posted

This article from celiac.coms home page has quite a bit of info to get you started.

https://www.celiac.com/celiac-disease/the-gluten-free-diet-101-a-beginners-guide-to-going-gluten-free-r1640/

Welcome and ask any questions you need to. I am glad she is feeling better. A whole food unprocessed diet is the best way to start. Watch out for codex wheat starch in products over there. It is considered to be gluten free but many of us react.

Faery Light Newbie
Faery Light
Posted
  • Author

Ravenwoodglass - Thank You for the link. I cannot even register with the UK Coeliac society because we are not medically diagnosed (unless we want to pay approx $60.00) how sad eh...

mushroom Proficient
mushroom
Posted

Ravenwoodglass - Thank You for the link. I cannot even register with the UK Coeliac society because we are not medically diagnosed (unless we want to pay approx $60.00) how sad eh...

I have the same problem in New Zealand, you know, the Commonwealth and all that stuff :P

ravenwoodglass Mentor
ravenwoodglass
Posted

Ravenwoodglass - Thank You for the link. I cannot even register with the UK Coeliac society because we are not medically diagnosed (unless we want to pay approx $60.00) how sad eh...

Glad I could help. There is lots of knowledge and real nice people here, and we're free.

Be sure to check out the section for parents of kids with celiac also.

Coinkey Apprentice
Coinkey
Posted

I found these sites to be a little useful (not as useful as here) but they did start me down the path of arming myself with knowledge enough to figure out my problems without the doctor. The writer is in the UK and if you sign up, she sends fact sheets and interesting recipe's each week. The last one you can write comments and has topics relevant to your neck of the woods (TESCOS).

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I used to live in England for 3 years, I suspect eating all those delicious pies, pasties, deep fried battered morsels exacerbated my problems. I did notice they had large "free from" sections in Tescos and Sainsbury's.

torimuse Rookie
torimuse
Posted

Has anyone else not had a biopsy and then cut out gluten to be better?

ME!!! Granted, I'm still new to all of this myself. I haven't even been gluten free for a month yet, and I'm feeling LOADS better. Hell, me staying up 'till 3am and KNOWING that I can wake up tomorrow in the late morning is enough for me to stay gluten-free, not to mention all of the intestinal problems that have GREATLY lessened.

My doctor refused to test me at all, saying that people who are constipated have IBS, not Celiacs, even when I told her that going off of gluten made me feel better, and that the instant I went back on it I was sick again. Now I get horrible reactions from cross contamination, so I know without a doubt what the culprit was.

I don't know about your UK Coeliac Society, but this forum has been all the support group I've needed. They are amazing people who have helped me out with so much in the small time I've been here. If it pertains to any food, type of food, food allergy, diet, etc, *someone* here will know about it.

Oh, watch out for gluten withdrawal and problems with dairy and soy (or anything else for that matter). I'm going through all of that right now, but I'm already showing improvement, so I think the worst is behind me. It gets better, I promise. :)

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Faery Light Newbie
Faery Light
Posted
  • Author

thank you all for your help and advice.... Question - does anyone have any advice or details on gluten free toiletries soaps, shampoo,s, toothpastes etc etc..

Kind regards

Faery Light

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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
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