Join Date: Dec 2011
Location: United Kingdom
Suspected Celiac Condition
Where to start:
I'm now the big 40. Have been pretty ill since a child, age 11 perforated duodenal ulcer - constant gasto problems since; all through school I had persistent gastroenteritis. Late teens diagnosed with IBS and then at some point candida albicans. Followed nutritional support as well as elimination diet but as I got older and lots of holistic treatments later I felt okay.
Was thought to have suspected celiac when I was around 19. Couldn't have the biopsy as from what I have been told cannot get to the area they need to test because of damage from previous ulcers that they cannot reach the area to test. We did elimination of gluten and as my symptoms improved, they said to follow it.
So I did and then when I was around 28, I saw a homeopath and he treated me for ME which I was diagnosed at 26. He said after 18 months of treatment I could eat gluten again. So I did and fair play didn't react although I would mainly be GF with only a small amount now and again. Fear of all my symptoms coming back. So story goes on..
I had my first child age 36 and whilst in hopital, we had a bit of a stay with complications, I ate toast for breakfast and a sandwich later on for example, so proper gluten introduction. Did I feel reaction to it, I don't know, we had such a rough birth that I was in a lot of pain, had transfusions and my womb didn't go down properly so always looked pregnant. No amount of diet and exercise did anything.
My gluten intake from then was the odd bit of toast but this only really started when my first child was advanced on the weaning stage. I would only eat may be 2 pieces of bread in a day but this was not every day and everything else gluten free as it was a way of life then. You could say a slow trickle of gluten.
My symptoms, very bloated, look 8 months pregnant, water retention, pain just under my ribs both sides and tender to touch really all of tummy area. Gas but very smelly. Stools seem I think normal, no weird colour but could get smelly. Brain fog, sometimes bit dizzy, headaches, hair loss, nails stopped growing, extreme fatigue, insomnia, nausea but actually sick 2-3 times a day, could be bile and sometimes food, felt low, stressed, cried sometimes, legs ached to the bone, I could go on. I went to doctors back in June 2011 as this was when all these symptoms peaked and I thought I was in an ME relapse. I was told that it was probably due to being very busy and I should slow down and rest more. Now have 3 children under 5 and run self employed business so on the go a lot of the time.
After that visit I decided to cut out the bread intake completely, as I said was only eating bread a couple of times a week, the odd pizza once a month.
I went Gluten free for 5 weeks following this doctor visit as something said in my head may be the gluten thing is back. My symptoms started to improve, within 3 days I stopped being sick although nausea remained. My body didn't hurt to the bones as before, slept a little better, mood improved, not so stressed out and ratty, less tearful, nails actually started to grow and so on. So yes, improved being GF.
Went back to doctors and they said Oh we better test you for celiac. They booked blood test after a few days and although I ate toast in the morning for about 5 days before testing it came back negative. I asked doctor when they gave me results what quantity should I be eating as only ate 2 pieces of bread a day and she said that wasn't enough. I was then told gluten challenge, eat at least 4 pieces of bread for 2-4 weeks before booking back in for blood test again. I since emailed UK celiac society and they said gluten in at least 2 meals a day for 6 weeks.
So the start of this intake - Nov 2011, Horrific, sick straight after eating the bread or pizza, this went on for days, I just could not keep gluten in. Extreme abdominal pain, basically everything back but worse and to top it off, my menstrual bleed was terrible, extremely heavy and lasted 15 days. I ended up in A&E because of blood loss and they gave me tablets to help stop the bleeding. My temper is flared, head fuzzy, bloated, pain, legs hurt, everything mentioned above is in full swing plus I get out of breathe easy now, I suppose the pressure of bloated tummy on diaphram and have heart burn for last 3 days too.
So my 6 weeks takes me to this weekend, Christmas time, yippee. I have booked in for bloods next Wednesday which will put me at 6.5 weeks eating gluten, I have eaten 5 to 6 pieces of bread a day for all this time. I feel terrible, symptoms completely peaked.
What I want to know is has anyone experienced my pattern of symptoms and have they tested positive for celiac?
Is 6.5 weeks and the bread intake I have done sufficient for accurate testing?
This past week I have increased it slightly, the odd biscuit as I know I am on last few days.
I am either celiac or very sensitive to gluten. Either way I know I have to be GF but I want an accurate test to find out if it is CD. If it is then very strict not deviating from GF but if sensitive then could cheat very occassionaly. I have read that CD is associated with other serious conditions which is why I am wanting the best accurate time to test as I know they cannot biopsy site for confirmation cause they can't get there. They are only going by this blood test for diagnosis!
Any feedback of experiences welcome and as said above is 6.5 weeks long enough eating gluten for accurate testing, are the antibodies sufficiently built up to be detected on this timeframe and gluten intake?????
Just to add that I have done a few home kits BioCard Celiac Home test and Xeliac Pro home test, a couple of weeks ago and one last night, result negative.
Many thanks and Merry Christmas.
Last edited by agelessamber; 12-22-2011 at 12:36 PM.