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It's been quite a while since my last update. I did in fact finish my gluten challenge and had a biopsy in September 2013.
The outcome of my "gluten challenge" last year was a negative biopsy. The gastroenterologist who I was referred to came to the conclusion (despite the blood tests and symptoms) that I don't have coeliac disease and that it's okay for me to continue to eat gluten.
In a way it was disappointing as I (and others) think that I do have celiac disease and I believe other doctors would give me a positive diagnosis on the blood work and symptoms.
Obviously I returned to a gluten free diet (I think this is especially important as there are other autoimmune issues in my immediate family).
And on to my family... unfortunately my brother who has terrible "gastrointestinal symptoms" at times (to put it politely) still refuses to get tested for coeliac. My elderly mother has quite advanced MS and other issues so even if she were tested and it were a positive result, I doubt she would be able to change her diet.
My only concern for myself in the future is that Coeliac Australia state that any future vaccine which might be developed will only be available to those who have been diagnosed with a biopsy. Also my doctor mentioned that they wouldn't be as concerned with screening for other associated conditions in the future without the positive biopsy / diagnosis.
Whatever happens, the gluten-free diet is for life for me.
Anyway, that's the end of my very late update - thanks for listening and the advice :-)
I didn't specifically get any more health issues come up, but I went back to speak to my doctor as I still get "IBS" symptoms when I deviate from my diet (my normal diet is somewhere between gluten free with some gluten-free grains and paleo. I avoid dairy most of the time and try to avoid all grains where possible).
I often have issues when I eat out at restaurants (even when being careful that what I'm eating is gluten free). I can get gas, having to make a dash for the bathroom and even fatigue and a headache thrown in for good measure the next day! I am assuming that there is either cross contamination occurring, leaky gut, intolerance to soy, preservatives, processed oils etc. or something else happening.
When I spoke to the doctor about these continuing "IBS" symptoms, he explained that it would be an idea to re-check for celiac disease because the biopsy is the gold standard. I also understood from the consultation that if I have a definite celiac diagnosis then my health might be monitored more closely in the future for any related conditions.
Anyway, now that I have done more research (and this forum has been really helpful) I might have decided again the gluten challenge if I was making the decision again right now. But I'm so close to the biopsy now that I'll carry on. I don't think I'll delay it ... I want to get back to feeling well again
I'm considering doing an elimination diet like Whole30 and/or seeing a dietician once I'm done with the challenge.
When I had a biopsy in 2010, there wasn't any sign of Villous atrophy.
I was wondering after my latest blood test if I might be going for a biopsy too soon?
I understand that the 99 U/mL result for Gliadin IgA suggests that there's something going on, but am I understanding correctly that the other results (the IgG and the tissue results) suggest that there's no sign of damage being done?
Again, whatever the result I will be going back to strict gluten free eating. I'm definitely intolerant to the stuff.
Thanks for your reply, Nicole. It was very helpful. And It's reassuring to know that I'm not the only one in this position.
Only 4 more weeks until my biopsy and I can't wait so I can go back to gluten-free again. The symptoms I'm getting in addition to gastrointestinal problems include headaches, feeling slightly nauseous when I wake, sleeplessness, brain fog, tiredness, irritability, tingling in my face and feet. I'm seeing my regular doctor tomorrow so I'll see what he thinks. Maybe we'll agree it's not worth putting my body through this for 4 more weeks!
Since the blood test I have been gluten free and feeling so much better. I did have a biopsy after the blood work, but it was clear. This could have been because I was at the time of testing (and had been for some time) on a low gluten diet (although, not totally gluten free).
Without going into the full story, my new gastroenterology doctor wants me to have the biopsy again now, and wants me back on a gluten diet for 4 to 6 weeks before the biopsy (I'm 1 week in now and feeling quite unwell at times).
I really don't know if it's worth it, but I've started back on the gluten now so I guess I'm committed.
Anyway, if anyone could help me understand the results above I'd be very grateful.