Finally, I've had my biopsy results back. I do not have coeliac disease, but have been advised to stay on the gluten free diet anyway. I am lucky that there was a recent article in the BMJ recognising gluten sensitivity as a separate entity, which I guess is what I have!
I came across this article yesterday, which outlines some of the difference between the immune response in coealic disease and in gluten sensitivity. Both appear to involve an immune response, but in quite different ways. And perhaps encouragingly from my point of view, gluten sensitivity is not associated with increased intestinal permeability.
Good to hear you got your results back and also that you have a clear plan of action. It sounds like you are doing all the right things, so let's hope you continue to feel better and better as time goes on.
Thanks for sharing the article. It's a fascinating area, isn't it? Especially as more and more people seem to be discovering that they have some form of gluten-intolerance.
Do hope you're okay and are happy with the (non) diagnosis...
I'm happy that doctors are starting to listen, but I self diagnosed 18 months ago so in another sense I'm no further forward. There is no agreement about how strict a gluten free diet needs to be in the case of intolerance, in fact there's not much known about it at all - this paper is the first thing I've seen that comes up with some explanation of what's going on. Although I have been much improved on a GF diet, I still feel that I've got some way to go to be completely well.
From the research I have done, the key is in your DNA. If you have the markers that indicate a genetic predisposition to deleveoling issues with gluten sensitivity, then eventually, over time it will manafest as some type of medical issue. In addition to presentations such as Dermititis Hepitiformus and Celiac Disease, there are allergies and digestive upsets, not to mention auotimmune diseases and a multitude of cancers. My gastroenterologist even went further to say that 40 to 60% of the North American public carries the genes and will suffer medical problems as a result. The American Medical Journal has just published an article directly linking IBS to gluten sensitivity. I was recently told by another specialist in gastroenterology, that IBS (like Fibroymialgia, migraines, costochondritis) are biochemical collapses in the sutonomic nervous systems. Connect the dots and you can see that gluten is a serious issue for many people... many more than they have ever publically admitted.
This strikes a chord with me as I too, have a gluten sensitivity (self diagnosed) but I also have a rare (and devastating) autoimmune condition called Churg Strauss Syndrome. My sister has Ulcerative Colitis. I have other family members who had autoimmune conditions (cancers) that they sadly never recovered from. My daughter is already showing signs of gluten sensitivity.
Any connection? No one can tell me (or more likely no-one wants to stick their neck out!). Surely, though, it's a no-brainer?
I would dearly love to get my DNA tested to determine this. Would you know how I go about this? If only to protect my children and their children.
My gastroenterologist ordered the DNA tests and they were paid for by the government here in Canada. He was trying to prove I couldn't possibly have Celiace Disease. He proved the opposite... I am genetically predisposed to develop any medical problem related to gluten and at the very least I am gluten sensitive, according to him. I declined the gluten challenge, but did have the endoscopy and sygmoidoscopy done. After 7 years of eating gluten free, there was no damamge, so they were unable to diagnose more than gluten sensitivity. I don't know how one goes about that in the UK. I do know it's extremely expensive here and not done lightly.
My understanding is that the genetic markers mainly apply to coeliac disease, and are much less strongly associated with gluten sensitivity. I think that TTG is an enzyme involved in repairing the gut when it is damaged... the gluten causes the damage, but it's the autoimmunity that stops your body repairing the damage. This also explains how the disease can go into complete remission on a gluten-free diet. No gluten, no gut damage, no repair enzymes, no target for the autoimmunity.
I think the genes that predispose a person to coeliac disease are connected to intestinal permeability... even when coeliacs are on a gluten-free diet and their guts have healed, they still have high intestinal permeability. Some of the genes linked with coeliac disease are also linked to other autoimmune conditions like type 1 diabetes. Intestinal permeability seems to be the driving force behind autoimmune disease, although I think the research on that is still in its early days.
Interestingly, calcium has a role in intestinal permeability. It shuts down the tight junctions. I read a study yesterday that said rats bred to be predisposed to get type 1 diabetes that were fed a whey protein diet didn't develop the disease, while the control group on a normal diet did. And Lynxcat recently posted something very interesting on calcium and oxalate and their role in intestinal permeability.
This explains some the autoimmune aspects, but not the sensitisation to gluten in the first place, which is where people like me with "just" gluten sensitivity are. Like all things connected with diet, I think this will turn out to be way more complicated than we expect.
I have the genetic marker and am not diagnosed as a Celiac. I am considered gluten sensitive. I also have multiple autoimmune disorders. The gastroenterologist ordered the DNA testing and it was he who made the diagnosis.
I got it wrong about the DNA markers, they are linked to gluten cross reactivity... sorry, I'm still learning. I do feel that intestinal permeability is an important piece of the puzzle though.
I totally agree with you. Here, intestinal permeability is called Leaky Gut Syndrome. Both my father and I have suffered from it. Never feel badly about growing and learning... we're all on that curve, and personally speaking, I intend to stay there for the rest of my life . Good for you that you are questioning and reaching out. That's the biggest step forward you'll ever make.
There is a suggestion that preventing or reversing permeability could prevent problems, but I have not found any scientific trials on this. Once all inflamatory food has been eliminated anecdotal evidence says that probiotics and L-glutamine help in gut repair.
I found the book "Healthier without wheat" by Stephen Wangen very useful in explaining non-coeliac wheat intolerance. I downloaded the book to my Kindle, so can't tell you the cost without going on the Amazon site. I read it on recommendation of a gluten free group of a world wide knitting forum I belong to.
I have not had any tests, but my sister has & although not coeliac, she is very gluten intolerant, so I suspect I might get the same result. Having to eat gluten for the test and the subsequent consequences to my health do not bear thinking about.
As far as "how strict a gluten free diet needs to be in the case of Intolerance" the book suggests you follow as strict a regime as a coeliac. I know that I can get away with eating gluten free oats occasionally, whereas my sister cannot, but if I eat oats every day I will increase the amount of joint pain I have. There's a certain amount of experimentation involved and what you are prepared to put up with when you react, which I think must depend on what symptoms the gluten gives you. (I know that as well as the joint pain I will get nausea & headache which knocks me out for the whole day & I'm not prepared to suffer that, so I am strict with my diet.)
There seem to be several articles/books around suggesting that we should not eat any grains at all, and that they can have a terrible effect on your health. As a species we did not evolve eating a diet high in carbohydrates. Grains (and dairy) alter the PH balance of the body, making it more acidic, which causes the body to lose calcium. This Nutrition lecture is from 2006, arguing that ancestral diets may be one way to ensure better health. The science is very comprehensive.
I agree with you Penel... my reading and research have gone down the same path. However, I'm allergic to nuts and all legumes, in addition to all tropical fruits and numerous other foods, additives and preservatives. As a compromise, I have eliminated and re-introduced a few grains and found some my body can tolerate. I use them sparingly to bake and it's working for me. The balancing act is challenging and I'm not always successful, but I keep plugging away at it ...hoping some day I'll get it right,
Good luck with the balancing act! I have found that I am ok with buckwheat and chick pea flour, and have found your information on flours very useful, thank you.
You're very welcome! I'm glad my research could be of help. I can't tolerate buckwheat or chickpea! We're all so unique. I'm ok with rice, sorghum, teff and tapioca. The potato flours and starch are fine too. but they aren't grains. Neither are quinoa and amaranth, although I use them sparingly.
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