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Russianbear

Worse Before It Gets Better?

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Hello everyone,

To cut a long story short I am just after re-evaluating my CC and possible gluten intake and there have been a few obvious ones that I never thought of until I read it on here (lipbalm, facial moisturiser, hops in my shampoo - how I was stupid enough to miss that when I know I cant drink beer), plus a couple of decontamination issues in the kitchen with my husband as he has cereal for breakfast and makes his lunch to take to work.

Could my CC be enough gluten to cause damage to make me sensitive to other foods? Before I went gluten free I had a real issue with dairy, which resolved, and that seems to be a bit of problem now. Also I feel starving hungary most of the time.

wee bit of background, have had the run around like most people

2010 IBS

2011 coeliac (blood test)

2011 no coeliac (neg biopsy)

2011gastro intestinal dysmotility (i have hypermobilty syndrome so have issue with stretchy tissue)

2012 coeliac (blood test and gene test)

2013 mastocytosis (poss not coeliac but wheat allergy)

2014 COELIAC blood, biopsy, gene. but lucky me I get to keep the other stuff too!

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Whoa. First of all, hops is not a gluten problem. The gluten in beer comes from barley and sometimes wheat.

 

It seems you have been jerked around by doctors. If you were diagnosed by blood test in 2011, you HAVE celiac. A negative biopsy could be either because you stopped eating gluten after being diagnosed the first time, or because they didn't take enough samples to get a true reading.

 

Yes, CC could definitely be the cause of your still being sick. If you are still getting gluten exposure it makes sense that dairy still bothers you, and if you have had repeat celiac tests that show you are still producing antibodies, that means you ARE still ingesting gluten. Go to the coping section here and read the newbie 101 thread. You will learn there how to avoid CC and hopefully that will get you back on the path to good health.

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Thank you for your reply, Ive had a good read on here of the the newbie thread and just generally on the posts about CC. They have given me ideas already of where gluten could be sneaking in, and your reply about the shampoo is good too.

Ive been gluten free since 2010, other than a 6 week gluten challenge before the biopsy in 2011, which I was told was clear for coeliac. My 2013 biopsy was clear, no signs of coeliac. For some reason my first gastro dr wouldnt diagnose coeliac, even with the positive bloods, but my GP couldnt understand this and told me it was coeliacs. It was only a few weeks ago when I went to a gastro dr about my masto that she dug out the pathology report from the first endo in 2011, and told me I clearly have coeliac disease. Just as well for me that my regular Dr was great and disagreed with the specialist.

We moved from Germany to the UK last year and its been since then that Ive been struggling, after the clean biopsies. But I had bloods done 3 weeks ago, so I guess they will show whether Id been gluten-free or CC. The differences in food labeling are 1 thing, and my general practices at home, but Ive gone over everything, and it seems like a few things were right under my nose, and I thought I was being so strict... it was only after getting a liner for my oven, matt black and super shiny and laying on my food prep counter,then lifting it up and seeing it covered in breadcrumbs and flour, from where we unpacked the groceries before the bread rolls were put into the utillity room, where all the gluten is kept away from the real food. Its so obvious, I dont even pick up the rolls in the shop, or let them into my grocery bags with the food. So am now paranoid that there are things I should be doing/shouldnt be doing that Im missing!

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