This is a post that has been rattling round in my brain for some time now, but I’ve been too scared to put it down in print for fear of putting people off a blog that has barely started. But as we are just about to enter the arena of testing for various autoimmune diseases including coeliac again it seems a good time to put this out there.
2 years ago Boo, now 6, was on the verge of having an endoscopy to test for coeliac disease. After many blood tests and a genetic test to confirm the presence of the DQ8 gene we had an unexpected phone call. Her final set of IgA levels had come back too low to qualify for the endoscopy and she was being discharged from care with the diagnosis of Gluten Hypersensitivity. This pricked at my eyes and stung my heart, there were tears and tantrums (from me!). This might sound funny to anyone whose child has been diagnosed with coelaic disease, how could I possibly want my child to have an autoimmune disease? But here’s why our diagnosis left me cold.
If on that day she had an endoscopy and been diagnosed with coeliac disease we would have been given the opportunity to have help from dieticians and local coeliac groups. We would also have the opportunity to have an annual review to check height, weight and review progress. In some cases (although I know this is rare) we would have had help in the form of prescription food for our basic needs. As a child diagnosed as hypersensitive our clinical input ended with that phone call. No follow up clinics or yearly progress checks and absolutely no assistance on the food front. I felt lucky at that point that when I asked, the doctor granted me access to one dietician appointment. But as far as the health service was concerned that was us done!
This got worse when we went out. We noticed a massive difference in people’s attitudes. If we stated she had coeliac disease, restaurants would go above and beyond to make sure we understood the options available to us.
“oh no! can it cause anaphylactic shock?”; and
“can I just check the ingredients with you”
were some of the phrases we heard quite often. On days when we mentioned she was hypersensitive to gluten we got:
“will it give her belly ache or a rash?”; and
“it doesn’t matter if you slip up then surely”.
Actually it does matter, it matters hugely. You can read our other posts for the exact problems it gave us but it was no less than the problems experienced by coeliac sufferers.
And then came the phrase we have heard so often, even from professional bodies, the one that really cuts like a knife……..”its not like coeliac disease, its not hurting their insides”. If those people lived with my baby girl and saw how many times I have sat stroking her hair while she huddles on the bathroom floor screaming in pain they wouldn’t say that. If they saw her eyes every day when she realises she is out of control but cant do anything about it, they wouldn’t say that. If they could feel the pieces of my heart breaking knowing we cant get help……they just wouldn’t.
It may not be affecting her villi however the jury is out on whether Non-Coeliac-Gluten-Hypersensitivity can actually cause damage to the gut in the form of leaky gut (a condition not recognised by the NHS but which is recognised by many other professionals) which can be caused by other autoimmune diseases such as Crohns disease and T1 diabetes.
So is gluten hypersensitivity a poor man’s coeliac disease? It certainly feels that way. The treatment received, the stigma placed on it as a lesser problem from massive bodies in the coeliac community and from the perception of the general public that we are just those “fussy types”.
Please understand that I am not lessening the impact of coeliac disease on a family – I know it’s massive! But also please please know we cant eat gluten just the same, we cant even have it in the house as our kids are so crumb sensitive, it has tried several times to rip our family apart and we have suffered physically, financially and worst of all mentally. Please don’t write it off as a lesser problem, because for our family it isn’t.
Thank you x
(side note – following our diagnosis back in 2017 we have been told that Boo is actually IgA deficient, hence why she was too low for endoscopy. We are about to embark on another long journey for re-testing of coeliac disease and various other conditions – I’ll keep you posted).