gluten challenge

[urbangirl]

Following a recent gastro appointment my GP has advised I have a biopsy. The specialist suggested this too but my view is if I don't eat gluten I don't get sick and not eating gluten is the treatment. Therefore, I do not consider I will benefit from eating gluten for 6 weeks and being ill. However, I am beginning to reconsider this. I wanted to ask people how they coped with work when doing the gluten challenge. It freaks me out to think I may have to go back to the incapacitating symptoms when I eat gluten.

[Janet-Haslam]

I'm the wrong person to comment really, I also couldn't face going back to the problematic symptoms and opted not to. However, the health benefits of being diagnosed are many, for example I have osteoporosis, really poor tooth enamel etc which would have possibly been managed earlier had I done the challenge. My gp did support me in my decision though and I'm monitored for bone density and take supplements. I didn't mind not having the option of free prescriptions as I make my own bread and find that the free from products contain too much refined sugars. If I had my time again I would probably do the gluten challenge for the health outcomes. Good luck with your decision.

[taffy]

I underwent the gluten challenge 3 years ago and could only manage it for 3 weeks. My kidneys were hurting as well as my stomach ache. My joints were killing me and the dystaxia was making my coordination go all over the place. I phoned the hospital and they wanted me in immediately to do the gastroscopy only to find that the villi was not "flat enough " for me to qualify a diagnosis of Coeliac disease. This was because I could not stay on the challenge for long enough. My family who are mostly Coeliac urged me to do it again but I simply can't. I think this practice is barbaric and goodness knows the damage I did to my system during those 3 weeks as I only have to have a small amount of gluten to lay me up for days. They could do a simple blood test to find out all they need and obviously don't have tthe funds for this. I will go through life not really knowing whether I have Coeliac disease or not unless I get the blood test done but my guess is that I'd do as my father, sister, grandson and 2 first cousins have it. It is really a very personal issue but one that I had no benefit from at all !

[mands4]

ive had 27 yrs of what my doc said was IBS but i did some food tests on my self and found if i stay off gluten my gut didt hurt ache etc, but in the end i did go in for the biopsy mine was negative but it doest mean you can eat gluten you can still have a gluten allergy , but yes you do have to eat gluten for a few wks prior to the test as i did i used colpermin cappsuals to tide me through till i had it taken

[Jacks]

I did a challenge years ago - it was hell after being well on a gluten free diet. Needing a toilet constantly wasn't easy. I was told of benefits being diagnosed but they aren't really there. I probably wouldn't do it again if I was doing okay.

[virgolizzy]

It is a really hard one to decide. I had problems, mainly a cough oddly enough for years on end & a bit of a problem with my stomach but it was the former which pushed me into doing lots of research. I had given up gluten for a good number of weeks before I persuaded the GP to do a Coeliac blood test for me ie TTGA & it was positive, they then referred me for an endoscopy but I refused to go back to eating gluten as my cough had all but disappeared. They did the endoscopy & I had a positive result. There was no way I was going to go back onto gluten for the test. The benefit of getting the test done are the bone density scans & the GP not thinking I was a hypocondriac after all! Have a chat with your GP, I can't see why he won't do the blood test now & even authorise a bone density scan without the endoscopy. whichever you decide, you know that you have a huge issue with gluten & you know that the road back to health is within your grasp. Good luck

[urbangirl]

Thank you all for your comments. I have not eaten gluten for nearly 5 years. During this time I have been extremely well and have had no symptoms whatsoever expect when I have been accidentally glutened. This has happened on several occasion and the effects were dire. The thought of having to go through this everyday for 6 weeks is not an attractive one, particularly so as I am working on projects where the results of gluten eating could be extremely embarrassing for me. Why on earth is there such a torturous procedure in the 21st century? My GP does advise to have an endoscopy because then I will have a definitive diagnosis. As far as I can tell there are few benefits to a diagnosis except being taken more seriously by the medical profession when you have problems that may be associated with coeliac. The specialist considers I have IBS symptoms as I do find I have problems with some FODMAPS foods eg stomach cramps, but I don't eat the identified suspects and avoid any foods if they give me grief. (The effects are nothing compared to what happens if I eat glucose syrup accidentally). I think he will consider IBS as the definitive diagnosis unless I have an endoscopy. I am still considering but have found your comments so helpful and they confirm what I think anyway.

[gfmum1]

Another thing to consider is that, after so long without eating significant amounts of gluten, your reaction may well be worse now than it used to be. As others have said, there isn't much benefit to be gained from a diagnosis & it's a lot to put yourself through, particularly given the impact it would have on your working life.

Would your consultant do the blood test for the coeliac genetic markers? You don't need to be eating gluten when it's done. It doesn't give a definitive diagnosis but if you test positive for both it does mean that you are much more likely to be coeliac & might then avoid the need to the gluten challenge altogether.

I get quite cross when people are labelled with "IBS", which I think makes many people see you as a hypochondriac when really it's just an admission from the medical profession that they can't, or won't, find the real reason for your symptoms.

[Mandygecko]

I did it. I had a 'normal' diet for 6 weeks then had a camera put down my throats and a biopsy to check if I was coeliac. It was a horrendous time. Apart from the physical symptoms I experienced I was advised to get help for depression as I was suicidal. All symptoms disappeared less than a week after the tests as I returned to a g/f diet. I'm not coeliac but clearly I have the same symptoms as a coeliac (apart from the damage to my intestines). Up to you but going through hell to get a diagnosis is sometimes what has to happen.