Hello!
I am violently sick, headaches, body swells up giddy, and bed ridden for two days if i eat any wheat/Gluten product but my Dr said i must eat it for two weeks minimum for a blood test! i really cant survive such ill health for two weeks! so i went back and told another Dr and was told eat Gluten only products as it may be only a wheat allergy, but i have found no food that has one without the other!!!! Every time i look up Gluten free its also wheat free! any ideas?
Have you been told you were gluten intolerant? Sensitive?
Thats what the test is for! I am only ill if i eat it! which is why the doctor said have the test! I am going round in circles here
I did my own test at home years ago. I'm gf sensitive.
Is your doctor thinking you might be sensitive only to wheat? If so, it sounds like your doctor wants you to try eating items that do not contain any wheat, but that do contain barley or rye. Those items would not be gluten free, meaning you would be eating products that contain gluten. But, since you would be avoiding wheat, you would be able to know if the reaction is specific to wheat, rather than to gluten.
My doctor mentioned that to me once. I had a difficult time finding products that contained barley or rye but no wheat whatsoever, so I never really found out if my ataxia is specific to just wheat as opposed to gluten.
It does sound like you need more clear instructions on what you are supposed to eat for your testing. If they are planning to do a celiac panel of blood tests, you would need to consume gluten. It might be a good idea to double check what tests they plan to run.
Thank you for your help
I just tried lemon barley drink day before and had like an Asthma attack! Real bad, and bad stomach day and night and I have no prob with lemons! Absolutely stupid my doctors making me consume this stuff to prove on a blood test! It's obvious I have Gluten intolerance! Typical NHS treatment
You could try looking at various soups they contain the strangest things!
My GP wanted me to do this to myself too. Said 6 weeks minimum for blood test - then, if that was positive I'd need to keep eating it until I got bowel damage that could be detected by biopsy - done by camera up and camera down. Oddly I declined their kind offer!
They are a disgrace! I had to go to Turkey for major surgery as NHS would not do it! When the doctors there did my assessment after seeing my reaction to Gluten foods they confirmed it! But here wants the blood test only and the after weeks of suffering eating it! And as you rightly said bowel damage!
Some doctors are more enlightened than others. It may help you to get a second opinion. My own doctor told me that if I got severe reactions from gluten and wheat, then I should simply assume I was intolerant/ allergic and avoid them. Simple. He didn't see the point in pursuing blood tests and the like, since it would have made me very ill to eat gluten/wheat for 6 weeks. Both me and my sister both get severe asthmatic symptoms if we eat wheat and severe stomach cramps/pains with diarrhoea if we eat tiny amounts of gluten. I don't have an official diagnosis because I've not had any tests but what would it achieve? I know what's making me ill. My sister is having loads of tests and is going round in circles and her health is bad because of it. If the only diagnosis possible involves deliberately making yourself ill first, it seems ridiculous to push for it.
Yes - I said to my GP, why would I do that to myself? Whether or not I get the blood results and biopsy you want, I will still know I cannot eat it and will have made myself very unwell in the process. 
Hi patricia here I agree with you they let you suffer untill I went that far down ill with eaten gluten & neaded a urgent blood transfusion right away then after suffering with agony pains & living on the toilet they gave me a gut biopsy & said I had severe damage with the coeliac disease &suffered for yrs & so depressed so babe try & let the doctors get it right for you take care & be safe
Exactly !! will see if my Turkish doctor will write something for doc here, it seems you can get some help from NHS with foods if blood test confirms but I will NOT eat any more to suffer like that again, many thanks dear
Hi suzden yur doctors rite babe if you was to eat gluten free wheat free your bloods would cum bak negative for the coeliac disease my sister was suffering with refractory celiac which means a hit & miss with the blood tests & after like me went that far down hill with malnutrition had to have a blood transfusion its not worth it hun get a right diagnosis be misserable for a time it takes for yur doctor to find out if you have this horrible disease becouse it is so complicated in the missery it makes you feel stay safe patricia
Unfortunately you need a blood test and a biopsy to confirm coeliac disease, at the moment there are no alternative ways to diagnose the condition. For some people it can take several years to get a diagnosis. It's understandable if you don't want to go down that route.
coeliac.org.uk/coeliac-dise...
Without an official diagnosis you may miss out on follow-up tests and will not be eligible for prescriptions of food, although prescriptions have been dropped by several areas and will,probably be stopped altogether soon.
rye oats( not gluten free oats) and barley, products don't always have wheat, what about rye vita, or rye bread ? thats one idea, hope this helps,
Im writing another comment, after reading the comments. It is really time there was another way of confirming a diagnosis of coeliac disease than to cause further damage. It is utterly ludicrous to insist that people go back on gluten and become ill just after they are getting relief. I am going to write to Coeliac UK about this, maybe we all need to be more pro-active and include the Relevant Professors as well and challenge them.
Clever lady! Good luck!
As you seem to know what's wrong with you why are you pursuing a diagnosis? If you keep going to see a doctor they'll think you want the relevant tests. You can probably look up the difference in symptoms between an allergic response and an autoimmune disorder (which is what coeliac disease is). They'll be very different.
However, if you are looking for gluten in other foods - rye, barley, normal oats. What about substituting Pumpernickel bread - made with rye and high in protein and vitamins.
The N.I.C.E. [clinical excellence] people write the rules, your GP merely applies them. If you don't show villous atrophy there's no coeliac diagnosis, it's why you have to eat gluten as it is the problem that causes atrophy. If you haven't been eating gluten you may no longer show atrophy, then the test is pointless.
It's up to you whether you are desperate for a diagnosis - in which case you have to eat gluten. [They might say the problem is that you diagnosed yourself and now you want them to sort you out.]
Your out if date! Since I wrote my first message, you should have read properly. I have now worked it out so avoid it all, no need to comment further. I don't keep going to the doctor about it either as I just had my gallbladder removed and digestive probs so have to go and they kept asking me to do the test which I won't end of story!!
Hi suzden wat you sed about gluten free oates even though there is gluten free oates I stay away from them becos there is cross contamination in them I got so ill eaten them for a while believing they were safe cos I so love porridge but for my health I stay safe I now buy from holland & barrett rice flakes they are nice with hot milk on stay safe babe patricia
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