2 days ago I decided with the help of the lovely people on here to do my 6 week gluten torture thing so that I can get re-tested for CD (the previous test came back negative because I'd not eaten any gluten at all for at least 9 weeks prior to the bloodtest. (I think that may be the reason anyway)
But I'm struggling....
I've tried my hardest to eat bread and cereal things ive missed recentyl etc both today and yesterday but I don't think I can face it again tomorrow - I've had the horrid usual stomach issues, a pounding head (even with the help of beta blockers) blisters in my nose that have just popped up over night, I'm aching and have huuuuuuuge black bags under my eyes - I think it's just completely taken it out of me.
Do any of you think it's worth it?? Or do i just need more willpower?? How have you done it?? (You need a bloody medal if you have!!)
I was so pleased on the weekend reading all your comments on my last question and thought this would be easy enough - but I'd forgotten how ill this really makes you feel... I've had a rubbish day in work because if it (and I LOVE my job) and am now thinking... Do I really need a diagnosis?? Should I just carry on the way I have been doing? Writing this it seems like a no brainier but I'm worried Incase I DO need a diagnosis...?
Thanks everyone for listening... Hope I don't sound like some pathetic moaner after all the lovely advice you gave me on Saturday! I did appreciate it all xxx
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Ladygbug
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The reality is that you are going through all this just for prescription foods what else will a CD diagnosis give you? Hospitals do not read your notes, GP's do not check what they prescribe for you, limited on what they can. If you can go without the diagnosis just eat what you can tolerate otherwise cook from fresh and avoid what disagrees with you. The GF diet is not fantastic and there are coeliac's that even avoid that. Hope this helps, make a decision and be positive with the way forward..
Oh my goodness, I don't think you can go thru 6weeks of that, you poor thing. as other poster says, the main benefit would be prescription foods, but I don't think it's worth six weeks of pain, stick with potatoes and rice! You know you are coeliac, you can tell anyone else who might need to know that you have it without the "official" diagnosis.
I completely agree with both of the above. I attempted the gluten challenge and gave up after 10 days. I tried again a month later and did 2 weeks if intensive eating before my endoscopy. The results came in as neg but my gp said he could see some damage on the pictures and was confident that if I could do a full 6 weeks on gluten we would get a positive diagnosis. That was enough for me, I have Coeliac in my family, I know that a gf diet makes me feel better and don't need that confirmed on my notes. Some people feel they need absolute confirmation of CD but I'm happy without it. It depends how important it is for you to have the title.
I remember having to continue eating gluten before having my biopsy even though my tgg levels were in excess of 300! Try to stick with it as with a formal diagnosis you will get the correct follow up care. I have developed a vitamin d deficiency which was causing cracking bones and shoulder pain. I also became calcium deficient and have developed a mixed connective tissue disease since too. I ate low levels of gluten each day Warburton thins were great for sandwiches and a basic digestive biscuit but pizza and bread gave me the worst foggy brain and by the end my stomach hurt so much, so I made sure my evening meal was gluten free and I started the day with just fresh fruit. Best wishes and I do hope you are able to stick with it, it will be worth it in the end. :0)
I decided not to do the test...i dont want to go through that. I dont need the paper that is stamped with a postive. If your feeling great being off gluten then continue what your doing
What I would do....is eat the gluten...you are in need of a proper diagnosis..so the knowledge of whats causing the grief...and therefore empowered as to how to deal with it......and ring the secretary of the hospital dept...and ask for a cancellation..if you can do this...an appointment at short notice might not be available..practical/possible....
Go for it...its not good..and I do appreciate not being on top form is *****y...but you can do this...
Hi ladygbug - it's a tough one. It depends what you feel having an 'official' diagnosis will do for you? Personally, I can't see any gain - unless the thought of dealing with a healthy nutritional and varied naturally gluten-free diet (ie NOT the 'FreeFrom' products) on your own is overwhelming for you. I do understand that there can be issues with various deficiencies. Personally I take supplements - I don't know the scientific value but they seem to help. I am pondering asking my GP what the score is re finding out how your various levels are when you don't have an 'official' diagnosis. Although I went through blood tests and skin biopsies and the consultant said he was "99%" certain I had Dermatitis Herpetiformis and prescribed Dapsone tablets for it, for some reason (cost?) he was unwilling to declare me as having CD. I have been off gluten and various other items (coffee, green tea, very little sugar, no sweeteners, no xanthan gum, low dairy, rare treat of a particular brand of gluten free oat, little or no soya products, etc etc) for about 18 months and ANY time I ingest or come into contact with gluten I get immediate and long-lasting skin and gut reactions, and other physiological and psychological reactions as well.
If I were in your position I personally could not bear to carry on with that amount of gluten ingestion - particularly if it's affecting your ability to do your job! Is it possible for you to sit with a GP and have this discussion, describing graphically what gluten does to you and how it impacts on your everyday life, and see what the GP suggests? At the end of the day it's your decision, but you only have one life to live and personally I feel if we can live it happily and healthily and productively that's really what we should strive for. Just my thoughts, but know that we are all supporting you no matter what you decide. This is a very good, open and supportive group and like you I have found much comfort, information and good banter here! Good luck!
Yes, but they could do this anyway if doctors thought she was in an "at risk" group - which is most women at a certain point in their lives!
I wouldn't want the diagnosis just to get access to x-rays and toxic drugs.
You poor thing. It sounds like torture. I too am back on gluten. My consultant says its needs to be for 3 months as I've been totally gluten free for 8 months but he suggested that only a small amount is necessary. I too have had the stomach problems within a couple of hours and whilst I hate it I believe it's a necessary evil. I won't be worrying about food on prescription. For me a positive test will open the door to the proper care that is required in order to manage the condition and the unfortunate problems that it can contribute too. Only you can decide if you can put yourself through this and if its going to be worth it for you in the long term. I wish you well Ladygbug xx
You scon't have to have a positive gf test to get a dexa scan. For me it was two separate issues. When I had the Dexa Scan they never mentioned gf foods.
Hi ladygbug, if your GP is supportive and switched on, ask if s/he will check your blood nutrients and bone health without the official diagnosis.
If so, there's no other reason to be "official" unless you are desperate for the prescription foods. Unless you qualify for free prescriptions you will probably find it is not worth it financially (especially when you factor in increased cost of health insurance and life insurance for being officially CD).
Anyway as you've probably found out for yourself by now, the easiest, cheapest, healthiest and tastiest way to eat is not to buy "free from" processed foods to replace old wheat-based favourites but to cook from scratch using GF flour and naturally GF foods.
That's your "treatment", officially diagnosed or not, and you are the best judge of what diet best suits you and your lifestyle. If your doc will keep a watchful eye on your bone health etc. that's as much as you will get from the clinicians, so do you need to be 100% certain?
Yeah in regards to prescription foods - I can live without them! I live in north Wales so our prescriptions are free of charge so financially would be worth it for me - however... Free from foods are just plain nasty uggggh! When I did my GF diet before the only FF food I would eat was the Warbatons square wraps and I doubt very much that they're available on the NHS haha so, nope free prescription foods are the last thing on my agenda, my health (long term) is very much more important to me and the thing that worries me the most is if the gluten has done any damage at all?
I already have a history of spinal problems (surgery 2 years ago and 3 lower discs removed) and apparently all of the Cartlidge in my body is basically useless... I don't know if that's anything to do with CD or not and I also know that an awful lot of close relatives in my family have suffered with Osteoperosis. (That's my worry)and this is the only reason I would ever want a result... Just so I know and if there's anyway I can look after myself better? I'm 32 in a few days and already my body feels like its starting to give up and have been told that I have a spine that looks more like an 80 year olds (which is very flattering)
I feel sooooo angry with myself at the moment as I HAD to have a GF free day today and now just think ' what was the point in struggling through the last few days just to give up after such a small amount of time!!??' But its just too difficult - everyone's telling me 'you don't look yourself' or 'you look tired' or best of all my business partner announced this morning..."Christ!!!! What's happened to you!!?? You look like SH**!" Haha!
I don't want to give up, but I definatly don't want to feel like this... I reckon I can deal with being 'unofficial' (with a different doctor who doesn't assume that every stomach complaint is IBS.... I KNOW for certain it lies deeper than that and is defiantly linked to the tiniest amount of gluten in my food.
I'd like to thank you all, both those who said continue and those who said forget it... You've been really helpful!
Phone call to the drs 1st thing to cancel my bloodtest and to instead ask for a dr whose a little more understanding and won't make me feel like I'm just complaining about a bit of belly ache!
I appreciate all your help so so much and have learned a great deal and as from tomorrow I will be 100% GF and unofficially CD!
If you have Osteoporosis in your family you should be getting a Dexa scan as a matter of course, so push hard for this. I would also agree you need to find a better GP. You should probably be on calcium & vit D, but once you have a better Dr they can give you all the advice. I sympathize - I have a good Dr but my sister's Dr in Flintshire is dreadful.
Well it looks like you are a gluten sensitive - I guess you know that much for sure by now!
It is your choice whether you continue with the gluten. I guess it depends on how much you want the diagnosis and how easy follow-up care will be without it.
If it helps, try googling the following: NICE CG86. They are the coeliac guidelines that the doctors are meant to adhere to.
I was first diagnosed in 1955 aged 6 by the age of 13 I outgrew what was considered coeliac symptoms. Following chemical poisoning in 2006 5 times, a blood test on 2/1/2007 came back IgA positive. I stopped eating wheat (Gluten) on 30th March 2007 and had the endoscopy/biopsies 25 May 2007 and told I had CD in June. The damage was evident without the gluten challenge. In January 2011 I had a referral, bloods DNA HLA-DQ2 positive (so has 40% of population). Endoscopy/biopsies Marsh 0 (gut healed but reduced folds,d2 a coeliac endoscopy marker. I have had Dexa scans and 1. Osteoporosis 2.Osteopena not taking any supplements, I do not attend gastro/dietic clinics. I do not touch anything from a gluten origin.
Having excluded all gluten's I still had the same symptoms and after 7 years a diagnosis of an allergy(not to gluten/wheat. )
It is only you that can decide if you want to get the diagnosis, it is not a club its a way of life. My sister is gluten intolerant but still has the same diet I do, she did the challenge twice, we have a family history of CD.
it was awful when I did it wish I had never done it and it came back negative anyway guess I will never know if I have true coeliac disease all I know is it was so bad I definitely have a problem and I was ill for a long time after as well!
NICE guidelines now state that a Dexa scan should be given to all with coeliac disease. Being properly diagnosed does mean that should you have any other possible problems...tingling in your hands and feet etc you will get checked out more quickly. Due to all cutbacks in medicine at present, and it doesn't look as though it will improve, your hopes of having all the relevant blood checks and being taken seriously by the medical profession is to be properly diagnosed. Unfortunately for us, the fashion of 'not doing wheat/gluten' is doing people with genuine problems a total disservice.
My osteopenia has been picked up at a very early stage since having 3 yearly Dexa scans since well before the menopause. My maternal grandmother and aunt both had Osteoporosis but without my CD diagnosis I would still not have qualified for the scan. Try and stick this out....Good luck
I'd never have had the DEXA scan if I hadn't been diagnosed and luckily I did have it because they found I have osteopaenia which is now being treated.
It also helps to have a diagnosis if you are pushing to get your kids diagnosed so they don't think you're just a nutter on a faddy diet.
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Good luck!
A question for those who are self-diagnosed gluten sensitive.
New - looking for an easy-to-follow plan to start investigating
New here, can anyone offer any guidance please?
will any private hospital test for cd without a gp referral?
New here hoping for some guidance
