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Member Since 17 Nov 2013
Offline Last Active Nov 25 2014 02:56 PM

Topics I've Started

Another Boring Plea! But I Am So Upset!

21 January 2014 - 04:51 AM

Hi lovely people, I have been a member of this forum for a while now, but I have never really introduced myself!! I have had symptoms of various kinds nearly all my life, but I thought that this just how I am! Being constantly tired, etc is part of my personality.

I am in Scotland and here the knowledge about celiac is not much better as in many places and I find myself in a most ridiculous situation as I still don't know whether I am officially celiac or not! Here the system works in that one sees a different person every time one goes to the GI specialist and even at times one has to go to the GP to get blood results, have a chat, etc.... In my case there seems to be a discrepancy of opinion... As I had been gluten free for two months prior to this diagnosis journey- I was told to go on a gluten challenge, there was also disagreement as to how long, depending on who I saw.... But I settled for 8 weeks and went for my endoscopy appointment bare being able to stand on my feet as I had a terrible reaction to gluten-I also get DH and I had an enormous concentration of blisters around my mouth and inside... And a small concentration at the back of my legs.... Th endoscopist was very alarmed at my general state! Together with the nurses , he saw mild scallopings in my intestine and said: your symptoms together with what I've seen I am confident that you have celiac- they also did a blood test and took biopsies. Of course, both were negative! I asked which blod test they had performed and I found out that they had done only one, the TTG IgA which sees whether you produce antibodies or not... My GP was adamant, negative blood test no celiac, but if you feel better you can go gluten-free- just cut out wheat, you can still eat barley, etc.... Lol

Letter back from GI specialist, negative biopsy - no evidence of celiac... E funny thing is that I've been a patient for 20 years in the same department as I have ulcerative colitis- it is a well know fact that individuals with certain autoimmune diseases do not produce these IgA antibodies and Erefore it is not surprising my blood was negative as I am deficient ... Signs of deficiency: constant mucosal infections: sinusitis, colds, bladder, etc... Nobody ever looks at your records carefully ... As also the type of colitis I have has been linked to celiac. Nobody ever asks any questions- my grannie had RA and horrendous digestion, my uncle has DH and RA..... How can they make a negative diagnosis based on one single, test without looking at everything else - or what happened to the other three tests? I was told by my endoscopist to go gluten-free ASAP!! And now I have been gluten-free for 2 months, so when I confront my GI in April are they going to tell me to go on another challenge?

I would be very interested to hear from other fellow people who have both ulcerative colitis and celiac?

Thanks so much