Good – and as as she says – a somewhat familar story from C this morning about a friend and her journey to a coeliac diagnosis:
A friend of mine has suffered allergies since she can remember. She has undergone fairly extensive testing over the years and it was concluded that she was just ‘allergic to everything’ and sent on her way. Over that time & since she was also diagnosed with and treated for asthma, hay fever, fibromyalgia & IBS.
She started a gluten & dairy free diet soon after I started mine & has used some info from your site I’ve directed her too. After experiencing very positive benefits from the dietary changes with symptoms decreasing she returned to her doctor who tested for coeliac in the traditional way. The results came back negative.
She continued with the diet however was referred to a consultant due to the reactions she described when she did ingest gluten & dairy. The consultant wanted her to eat gluten for several months before more testing but she challenged this and said she wasn’t prepared to put her body through that – was there another way? So he then offered a genetic blood test!! It’s taken weeks to get the results but they came back positive for the coeliac gene!! Her phrase was – why has it taken until I’m forty to finally get this?
She is now being asked to eat gluten every day for a month and then have the intestinal biopsy.
Quite a journey so far – but I suspect a very familiar one.
My gist of my reply was:
I HATE this instruction to eat gluten for several weeks to get a biopsy result – which is patchy at best anyway and the gluten just causes more, sometimes irreparable, harm.
If the genes exist and the symptoms/diet challenge match, that is enough for me and many other gluten experts. Don’t forget, too, that she has only looked for DQ2/DQ8 – the coeliac genes – but not the other DQ gluten genes like DQ1/DQ3, so I worry that many people who come up negative on the standard coeliac gene test will then go away and think they have no genetic gluten illness, when they probably have non-coeliac gluten sensitivity. It’s madness.
That’s why I went to great lengths to be able to list the proper gluten gene test which looks for all of them on both A and B locations (some labs do the DQ1/3 etc but only look on A whereas I have found quite a lot of people turn up the genes in the B location only and, again, would be missed. Bit complex, isn’t it?!
So glad she is actually getting somewhere now then. And well done C for helping her get there! Let us know how she gets on in comments, C..