I LOVE getting emails like the one I received this morning from A. She illustrates just how hard it is to get a gluten diagnosis – and the dangers of the gluten challenge. In fact, immunologist Vojdani in the Gluten Summit last week cautioned against this very approach because of the damage caused by molecular mimicry when the body sees it’s arch-enemy gluten again. As you can see in A’s email here – you usually get worse and, according to Vojdani at least, it can trigger an auto-immune process in a whole different area of the body. WHY then do we insist on a gluten diet challenge, beggars belief!!
Vojdani: [The process is] based on memory lymphocytes. They are on a gluten-free diet then their memory lymphocytes are quiet. They’re sitting in the
tissue, no reaction, no antibody production. As soon as they go back on eating gluten or other food antigens, their lymphocytes will react to this and will make hundreds, tenfolds
more antibodies than they had before. And this time those antibodies will go to different tissues.
If it’s in the brain, they will cause a severe headache and other abnormalities as well…lymphocytes which are going to react to the new food antigens consumed by the patient, and, therefore severe immune reaction equals the induction of severe symptomatology.
Nuff said. Is it really worth the risk? And now the email from A:
Woo hoo! I’m doing a (albeit half arsed due to joint pain) happy dance after reading your ‘How to get an NHS diagnosis for NCGS’.
After a tedious elimination diet I’ve whittled my autoimmune triggers for rheumatoid arthritis and Sjogren’s Syndrome down to corn and other misc grain, wheat gluten included. Coeliac Disease is rife in my family (including my Dad) and my symptoms greatly improved when I came off gliadin, but I couldn’t understand why I was still having such horrid arthralgia attacks – until I narrowed it down to that pesky four letter word ‘corn’. I gave that up along with rice, and woot woot my symptoms disappeared and my strength came back completely – for the first time I could pick up my nephew, who’s now nearly 4, so yes, I was a bit of a legend that afternoon!!
Sadly even though I’ve just had a negative villous atrophy biopsy in May this year, my GP was determined to get a CD diagnosis so asked me to go back on a full diet for a repeat blood test to understand what was going on and definitely rule out the development of CD . . . . I did so in September (not realising what could happen) and surprise surprise I’ve never been right since, my sensitivity has gone through the roof and I now have symptoms of malabsorption (anaemia and Vit D, plus my white cells have dipped to just above ‘okay’). Things went from bad to worse when I was put on iron pills and Vit D capsules laced with maize starch and corn oil – yowsers that wasn’t funny for a while. I’ve now just started on some Higher Nature iron and Vit D supplements c/o your site.
Then the final blow, at my latest hospital appointment with a Gastroenterologist last week, it was suggested we repeat the endoscopy, so I’ve been asked to go back on a full gluten diet for another month come the new year!!!
I got the obligatory blank look when I mentioned NCGS, I suggested she tune in to the Gluten Summit, I’ll let you imagine the stifled enthusiasm on her face! So I left crestfallen, with my A4 envelope of research, food diaries and trigger patterns not even properly evaluated. BTW There’s more chance of me flying to the moon on a butternut squash than going back on gluten… Really don’t know if I have the stomach to reintroduce everything – literally!!
On a personal note I’d like to thank you for your amazing website, which has been invaluable to me – along with the Gluten Summit . . . which I found out about via your amazing website!! (Huzzah!)
I even made posters and took them to my doctor’s surgery in an attempt to spread the word!
Keep up the all-round super duperness!!
Good for her!