CSW

I was about to start a new topic on, basically, this topic, so I hope the OP won't mind if I ask my question here too. My husband went gluten-free several years ago before either of us knew anything about celiac disease except that it existed and that the only cure was being completely gluten-free. We didn't know that it would be almost impossible to get a diagnosis once he was gluten-free.

I think a clued-in doctor would probably concur with our diagnosis because he has/had so many of the classic symptoms (including iron deficiency, short stature, dental enamel damage, mouth ulcers, mysterious skin rashes, in addition to GI symptoms, depression, fatigue, etc) AND most of all, because celiac disease runs in his family. But as you all know, it's basically impossible to get an official diagnosis without the dreaded "gluten challenge" --which he simple cannot and will not do --even very minute amounts of gluten make him sick for days now, so the idea of eating gluten for 3 months or whatever is totally out of the question.

I see some of you are saying that a diagnosis isn't necessary for an adult, but I feel like he isn't getting proper follow-up care without a diagnosis --testing for related conditions, etc. What would you all recommend? I should add that the various GPs, etc he's consulted over the years (and even one GI specialist) were completely unhelpful, despite being in two European countries where celiac is very common.

thanks for any ideas!!

For what it's worth, my very sensitive husband has no problems ever with Eden or Westbrae (we like Eden because the can linings are BPA-free) --we read somewhere that canned beans should always be drained and rinsed before eating, so we do that, which may help with any possible slight CC.

Right, that's what was confusing, because he did get all his usual glutening symptoms, and we just couldn't figure out why. We've been sticking to super, super safe foods for the last few days, and so far, so good. I guess it makes sense that his level of sensitivy to CC would fluctuate depending on the condition of his whole system --I was just panicking that it was a one-way street--that he might now ALWAYS be that sensitive, and then what on earth could he eat? (especially since he's a vegetarian...)

Hello all--not sure if the OP is still reading this, but (at risk of being very unpopular and un-trendy) I wonder if she and her husband are/were actually suffering from going TOO low-carb? From what I'm reading, while many people do really well on a paleo/Specific Carb/GAPS-type diet, apparently some people really, really DON'T do well (eg, http://www.thenouris...r-everyone.html, and I'm sure there are more articles out there if you looked for them).

Maybe adding back in some safe whole grains --soaked overnight or longer before cooking, for maximum digestability --would help? We've been using this method for brown rice, http://wholehealthso...brown-rice.html with good results.

Just a thought...

As a "spouse of," I just wanted to second the person who pointed out that your life may be about to get A LOT happier...if your husband is a celiac and he stops eating gluten, his personality could change dramatically for the better! So much of the mood swings, anxiety, irritability, etc are caused by the gluten.

I hope you'll also reconsider your position on diet and autism --the jury is really split, but there _is_ significant research showing a high correlation between gluten intolerance and autism, and it's fully possible that your sons could benefit from a gluten-free diet. Having an all gluten-free household is much, much less stressful than trying to keep one person's food safe, too.

Feeling for you and wishing you the best of luck...