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KCG91

Member Since 01 Oct 2013
Offline Last Active Aug 05 2014 05:46 AM
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#922283 Low Ferritin

Posted by KCG91 on 01 July 2014 - 03:08 PM

Mine was at 3 in September - I took fairly strong supplements for six months and it's now remaining normal by itself which I am very pleased about! It's made such a difference to how I feel.


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#921534 Dad Brought Home A Bag Of Wheat Gluten, Now I've Given Up.

Posted by KCG91 on 25 June 2014 - 08:04 AM

Building on the slow cooker/mini fridge idea, if you get the stuff together to do it you could cook in large batches and keep it in the fridge/freezer to reheat later. My deal with my mum is that I have the kitchen on Sunday afternoons and cook three meals in three-portion sizes then eat these during the week to avoid trying to cook separate meals on weeknights (which was causing tension). Obviously you need safe equipment and uncontaminated food for this but it was a compromise that worked for us (she is very territorial!). Good luck!


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#919290 Endoscopy And Diagnosis. Why Or Why Not?

Posted by KCG91 on 06 June 2014 - 03:25 AM

Just reporting back on my experience - I saw a new GP today, having moved back home, and explained my situation re. not having a biopsy. She took one look at my ttg IgA levels for September and January and said that I was absolutely right to refuse a challenge and biopsy at four months gluten-free. She's re-running a load of tests (coeliac, iron, bone density, inflammatory stuff) which she is then going to send off to the gastro unit at the hospital explaining that they are to treat me as diagnosed coeliac based on blood tests and response to diet - so I will get my follow ups, dietician meeting (for what it might be worth) and prescriptions etc without having a biopsy. Happy days!


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#919042 How Do You Describe Celiac Disease When People Ask You "what's That?...

Posted by KCG91 on 04 June 2014 - 02:34 PM

I say that I have an autoimmune disorder which means that when I eat even a little gluten my immune system attacks and destroys the lining of the intestines, but I'm fine when I don't eat it. When people ask what gluten is I explain that it's a protein and when they ask what it's in I just say oh it's found in wheat, barley, rye and 'ordinary' oats but really if a product has an ingredients list you'd need to read it to know for sure. I find that this a. deals with 'oh but you don't look sick!' and b. puts people off cooking for me ;) 


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#918166 Shortness Of Breath

Posted by KCG91 on 28 May 2014 - 02:12 PM

Have you been tested for anaemia? I believe that can be a symptom. I think I breathe easier now mine has been treated.


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#909850 Please Help!

Posted by KCG91 on 22 March 2014 - 11:15 AM

Hey. I don't know much about the symptoms (there are over 300 associated with Coeliac) but with regards to battling the NHS for testing and referrals - if I read it correctly and they haven't yet run a coeliac panel on you both, get back to your GP and keep asking. Demand it. Coeliac UK is campaigning fairly visibly at the moment for GPs to run tests more often so check out their website for advice. If both of you get tested and one is positive they should take the other more seriously as there's a 10% chance of immediate relatives also having Coeliac (see Coeliac UK for that too!). If the blood tests come back positive they have to make a referral to a gastro for you (but as ever with the NHS, chase this up ;)

The non-gastro symptoms your mum describes - look up peripheral neuropathy/neurological problems (Not as scary as it sounds!). Where in the UK are you? (I'm in Scotland). 


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#909211 How Does It Feel To Be Cured Of Celiacs, When You Finally Get Your Life Back?

Posted by KCG91 on 17 March 2014 - 03:21 PM

I'm lucky in that I think I was diagnosed only a few years after problems began, that although looking back I can see I was ill, I didn't really have anything dramatic going on at the time of diagnosis (again, lucky to see an attentive GP!) and that other than the usual anaemia I didn't have any other AI illnesses. 

However, six months in and the difference certainly feels massive. Souped up version of the old me about covers it! As well as having more energy and a better mood generally I notice it in the sports training I do - I'm finally getting back what I put in, rather than just exhausting myself. Watch out world ;) 


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#905538 Man I Was Bumbed!

Posted by KCG91 on 09 February 2014 - 07:35 AM

I agree with Colleen. Before you go all caveman, ditch anything from a package. Use my 5 ingredient rule: If the label has more than 5 ingredients (and I cannot pronounce half of them and even my chemist hub shakes his head and makes that face like "er, that's not food, that's just chemicals")  LOL

then, I don't eat them 

 

And for what it's worth, I have been on a primal diet for 7 weeks,....it's not horrid, but let's just say....... I still drink vodka.  :lol: 

 

Keep your rice and beans if you can!  ;) 

Yesss the five ingredient rule looks like something I can do! I had a week of rehearsals, performances and late nights which meant living mostly on the only packet of crisps in the vending machine I knew were gluten-free. And now I have flu for the first time in five months. I think my body would appreciate the five ingredient rule... 


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#904559 3 1/2 Months Gluten Free And Blood Test Still High, Is This Normal?

Posted by KCG91 on 31 January 2014 - 02:23 AM

So I got my test results back - my ttg IgA has dropped to 22 u/ml! (Normal is below 7) I am so chuffed with this. They didn't, for some reason, test my iron in the same way :s but apparently the size of the red blood cells indicates that the anaemia is coming under control.


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#903296 Just Wanted To Share... Race Training Before And After Diagnosis

Posted by KCG91 on 20 January 2014 - 03:06 PM

For those who don't know, I was diagnosed whilst training for my first marathon and experiencing extended runner's tummy, as well as worsening training times. I was diagnosed with severe anaemia at the same time and one of my big questions was, how will this affect my training? Should I stop, cut down, how long for? So I just wanted to share my story so far for anyone who may have the same questions.

 

I was diagnosed mid-September, ran my first marathon at the end of the month and went gluten free in early October. After that I had a few crappy months adjusting to the new diet and getting the anaemia under control - I would say I had about three months of only running twice a week and doing my pole fitness and aerial acrobatics once a week each. There doesn't seem to be hard and fast rules re. coeliac and training so this was made up as felt right.

 

Enter January 2014, three months gluten free, two months on iron tablets and a new training plan for a 10 mile race at the end of March. I'm in my second full week of the training plan and it feels so amazing to train (running) five times a week AND SEE AN IMPROVEMENT! And to not feel exhausted during every run and to be able to get oxygen to my muscles properly (and not plan my routes around public toilets)! Whereas before I would run with a feeling of trying not to do my worst, now I run wondering how good I can make it. 

 

I just wanted to share this as a lift for anyone in my situation and a reminder to be patient with yourself (as everyone here reminded me to be). You are getting a second chance to be your actual best - the results will be worth it :) 


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#899433 Has Anyone Had Raynauds Syndrome Improve On Gluten Free Diet?

Posted by KCG91 on 12 December 2013 - 02:49 PM

I wondered about this as my Mum has Raynauds and although I've never seen a GP about it my circulation was really bad before I went gluten-free. Happy to say it's improved considerably :) hope yours does too!


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#895480 Amazing Conversations

Posted by KCG91 on 11 November 2013 - 02:33 PM

My friends know I don't buy biscuits any more because the gluten-free ones are so expensive (we are students!) but they always buy a box when I go over :)
My Mum sent my Dad to the wholefood co-op for one thing for me (there's a great one near them and none near me) - he came back with so much stuff for me! He's also spent ages making up curry powders from scratch because he's worried that the shop bought ones will contain gluten/won't be labelled properly. 


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#895194 Gluten Sensitivity - Concentration

Posted by KCG91 on 08 November 2013 - 05:59 AM

Glad to hear a lot of your symptoms are better after going gluten-free! After getting diagnosed with coeliac and going gluten-free I still felt really really tired and unable to concentrate (daydreams - me too) until the doctor had another look at my records and realised she should have prescribed me iron supplements for anaemia. D'uh.

 

Even though your bloodwork was negative I'd really recommend getting tested for anaemia or other deficiencies. I'm feeling better within about five days of starting the supplements. For the record - I tried chemist bought ones previously and they did nothing, so IMO it'd be worth trying to get tested and get the prescription ones if it is iron you need. Good luck (and as everyone else has said, give yourself time to recover!). 


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#895075 Nesting :-)

Posted by KCG91 on 07 November 2013 - 05:52 AM

To save money when replacing my stuff I collected empty glass jars (but binned the lids and used cling film to cover them) instead of tupperware. A matching set of brightly coloured stuff would be prettier though :) and more obviously gluten-free if you have kids too I guess. 


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#890927 Marathon Running Before/after Going gluten-free

Posted by KCG91 on 06 October 2013 - 03:05 AM

Aha thankyou! I've gone from hating running at school to being really 'grateful' to it, because it was excessive runner's tummy trouble and decreasing performance that alerted me to something being wrong - I'd no noticeable symptoms before so who knows if/when I'd have been diagnosed otherwise. It also gives me a real incentive (because like I say, my symptoms don't really affect me day to day) to stick to gluten-free and stay healthy because I want to improve my running. 
Well done on the walking - it's a mile further than the guy on the couch (most of whom don't have coeliac to worry about!)

 


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