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Gluten Challenge For Diagnosis
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Hi everyone! I'm new here and about to face a gluten challenge...

To recap, I've suffered with bad gastro symptoms for my whole life, but they got worse in my teen years (I'm 26 now). In 2006 I had the TTG blood test for coeliac disease, which came back positive with incredibly high numbers. I then had a biopsy which came back negative, so I was sent away with a diagnosis of IBS.

My symptoms continued and I wasn't taken seriously again until 2010 where I had the TTG blood test again. They said sometimes the stomach biopsy can only take from healthy tissue and miss the unhealthy tissue if it's patchy, so if the results were positive they would do a more detailed biopsy. This time the blood results came back completely negative. However, this year I had been on and off gluten free diets and hadn't eaten wheat bread or pasta for years. I hadn't completely eliminated gluten, but certainly wasn't eating a lot.

This year I was put under a dietitian and put on the low-FODMAP diet for IBS. I showed some improvement but my symptoms didn't completely clear up. Mainly diarrhea (steatorrhea), cramps, bloating, nausea. The diet is very low in gluten but not gluten free.

So now my dietitian and gastroenterologist have looked through my history and think that they may have missed affected patches with the first biopsy and then I had a false negative result in 2010 because I wasn't eating enough gluten... and they want me to do a gluten challenge this month and then have more tests. Which means I have to stuff my face with it for a month or so to get the antibodies back then have blood tests and biopsies again!

I just wondered if anybody else has done this and what their experiences were? I ate two pieces of bread on Tuesday evening and was in agony all day Wednesday and yesterday. I haven't had the courage to eat any more as I am so terrified to feel like I used to... I became agoraphobic and didn't want to leave the house because I had diarrhea all the time and didn't even feel like socialising because I felt so rubbish. I do want a proper diagnosis because I think all signs point to coeliac disease, but just wondered if anyone had some advice or information from doing a similar gluten challenge?

Thanks!

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    • Hi, Ok good advice and I am sincere when I say how much I appreciate a lot of the responses, advice and encouragement that have been posted here. I'm not sure what a nutrionist is but a dietician (here in the U.K.) is a heavily regulated medical profession and my dietician is based most of her week in a hospital where doctors and MD's as they are known refer patients to her for help. She works every day with celiacs, dh sufferers and people with crohns, ibs etc and seeing my skin, listened to what I was saying (particularly about how my redness and blisters resolved on a gluten free (though not wheat free) diet for several years, and sent a report to my doctor/MD requesting a battery of tests - tests that can indicate dh, celiac and associated complications. I also have a friend with a wheat allergy and two with celiac (all diagnosed) and they are encouraging me to go ahead with getting these particular tests. So that's great but reading the above quote that suggests that situations like sharing an oven used to cook gluten-containing pizza, should not cause a gluten reaction. I thought, my god what's the point of going through these tests if my recent reactions aren't actually to do with gluten. Although my dietician is concerned about possible dh and has been through years of medical school, I also really trust the advice of an advanced member on this site and if they think oven-sharing shouldn't cause any gluten reaction, what hope do I have with an MD? It has taken me years to pluck up the confidence to ask for any medical help because I feared that sort of response along with a focus on psychological issues and hormones etc early on in the thread (even though, I only started feeling depressed since yesterday). Actually, I'm a mental health nurse so it's good to see people are alert to these issues but I am also pretty familiar with depression and I know that many people with physical health problems are fobbed off by doctors with talk of depression, stress, and hormones. I'm sorry that I took the (above) quote to heart and I know that I allowed that to colour my perception of the whole thread, which has been helpful in many ways. Best wishes to you all, even those I didn't agree with! Rhian 
    • I thought maybe doing a trial period to see if he reacts positively to being gluten free and then adding it back to see if symptoms come back would maybe be helpful to the doctor? But I guess that's true, it might skew things regarding any future tests that might be warranted. 
    • If you haven't had her tested yet please do not go gluten free. Get the celiac testing first as if she does feel better gluten free when she has to go back on gluten for testing she may have much worse symptoms.  There will also be a higher risk of false negatives.
    • I did not mean to imply that you should put him on a gluten free diet.    If you suspect a problem with gluten, please get an opinion from a GI who is celiac savvy.  All celiac testing requires a patient to be consuming gluten.  The slightly equivocal TTG?  That warrants a gene test at the very least.   http://www.mayomedicallaboratories.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf  
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