A change in diagnosis
au Sam & cam
rightxhere
Well, I never ever thought this day would come.... but for the past few months I've been seeing a urologist, and even had a minor procedure done to fix a problem with my bladder.... and when I saw my surgeon this week I got told the most unexpected thing ever.

"You are definitely celiacs."

I stared at him, mouth dropped open. "What? No, I've had tests, and they were clear...."

"Nope. You're celiacs."

He's got patients with the same problems as me, with celiacs, and he says that's what I've got and been struggling with since I was a kid.

I know it's not a gold standard test, so the reality is most people will still say 'well you weren't proven to have it so no you're not', but for MY piece of mind, for my mum's piece of mind, this is.... staggering news. And it's nice to have someone say 'this is what you're dealing with'.

I feel like I have been fighting for YEARS for this answer. Actually, I have. And it's nice knowing all the immune system reactions, the sores I get in reaction to gluten, the intestinal and bladder inflammation.... is not in my head, because there is actually a cause.

Fingers crossed he tells that to my GP as well, because she wants to say I've got it but needs a specialist to say so as well.

UK gluten free help
burningman hair
brokenheather
I'm going to be over in London (hotel in Covent Garden area) for a little over a week, arriving Friday. I have not had any chance to research food and all - but over the years I've seen a number of you posting from there, so I thought I'd ask here first!

Where should I eat?

(I'm also packing a tragic set of emergency food, just in case...but, you know...)

genetic test results
call me - icon credit falseh0pe
tragic_4
I just received the results of my genetic tests which came back positive for having a genetic predisposition to celiac disease. The doctor said this does not mean that I have celiac disease for sure, but that I could. My blood antibody tests (when consuming gluten) were previously negative, and my own results to going on a gluten-free diet were inconclusive, meaning I still have some symptoms.

Currently, I have been gluten-free for a while, but I'm entertaining the idea of going ahead and doing a full-on gluten challenge and then doing an intestinal biopsy (the doctor said it was up to me if I wanted to or not). There's always the possibility that the gluten challenge itself will make me a lot more sick and then I'll know all I need to know, but I've tried this before a couple of times in the past just to test my symptoms, and still wasn't sure. Because I still have doubt, if a firm diagnosis were reached I think it might be helpful. If the biopsy results are positive, then I will know *for sure* that I have celiac disease and should remain 100% gluten free, and that any remaining symptoms would be due to another issue.

But, what if I do the gluten challenge and the biopsy results are negative? Do you think the genetic test alone is evidence enough that I have celiac disease anyway (and thus should just skip the biopsy part entirely)? Or if the biopsies are negative should I feel relatively assured that I don't have active celiac disease? Even if it did come out negative, I wouldn't necessarily go out and start consuming a bunch of gluten, because the genetic test would make me forever paranoid. But, I probably would feel like I didn't have to be as worried as much about things like cross-contamination or small amounts of hidden gluten (for example, if eating in a restaurant), which alone would be worth it for me. Do you think this would be a logical conclusion based on the potential biopsy outcome, or because the genetic test is positive should I simply consider that I 100% have full-on celiac disease no matter what, and that any biopsy results would be useless either way?

Thanks

Weddings
aeryn
I'm invited to a wedding in June and I don't know what to do about the food... Do I tell the bride not to put me down for a dish? Or ask what alternatives could be served? I obviously don't want her to try to figure out what ONE person can eat, but at the same time I feel really awkward sitting there not eating... And I don't want them to prepare something that I won't eat. So what do I do??

The bride is a coworker of mine and she knows I have a gluten issue, so it won't be a surprise. I went to a wedding for another coworker (who I'm closer to) a few months ago and it was more upscale than this one will be. The bride had other guests who were vegan so she had the chef prepare something we could all eat and he was very informed on celiac disease, and the meal was delicious.
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Hair Dye?
delicatelephant
I forgot to read the ingredients on some developer and let my friend dye my hair. Turns out it has gluten in it. It was already in at that point. We washed it out. The color has changed. Can I get sick from just touching my hair now? I will take precautions assuming yes, but really? This sucks.

Question for bakers
lucy
rainarana
We don't really do much for the holidays but I wanted to make a dessert, as we do like to eat, and I've decided on a crumble.  Strawberry/cranberry to be exact.  Most recipes call for a starch/thickener to be added to the fruit mix, but most starches don't agree with me at all.  I'm good with almond meal and coconut flour is okay in small amounts.  Would one of these be a better option? 

Gluten Free in the UK
happy_arthur
rilestar
Hey guys,

I'm travelling to the UK (mostly England) in Feb/March, and I'm after any advice on what's available in supermarkets for the gluten intolerant. What are the best brands? Is there a special gluten free section in supermarkets, or do you need to hunt through everything? Any products I should definitely skip?

Eating out tips welcome, too, though I'm prepared to self-cater (or eat lots of vegetarian curry).

Any help would be greatly appreciated!

Oh, one last question! Has anyone had any experience of the "Asian Vegetarian Meal" on international flights? I'm planning to pre-pack my own food for the trip, but was wondering if anyone had any idea of what is served on that menu. Thanks!

Ugh
corset binding
snuck
Seeking advice...

I was diagnosed about 10yrs ago, and went gluten free. Since then I've barely had any problems - I'm pretty pedantic about all manner of things, but generally can tolerate the odd occasional amount of trace gluten without serious side effects (I bloat or get loose stools, but I'm not majorly ill).  I never got the whole 'stripped your intestines' level of damage even in the first place.

I'm currently about 34 weeks pregnant and have had a shocker of a month - Hand Foot Mouth plague descended on our house (that was fun - it lives in the bowel for a month afterwards also), very large amount of emotional and physical stress (husband had surgery X2 and not able to fully care for our oversized heavy toddler or do a  lot of housework etc) and I'm very anemic and was taking (gluten free) heavy duty iron supplements.  I came off Zofran because it was competing (constipation causing) with the iron (diahorrea causing) so I have to put up with constant low grade nausea again courtesy of my never ending hyperemesis/extreme morning sickness.

My poor stomach is in revolt. I've never had as a revolting few weeks as I'm in the midst of now... constant all day toilet visits etc.

How does one manage a major coeliac blow out? I'm not/haven't been eating gluten - but it's classic hard core coeliac as far as I can tell now.  Do I go off all possible irritants and do an elimination diet again (not sure this is safe at this point in my pregnancy) - ie all dairy, all sugars, fruits (it's summer dammit, but I have a classic mild fructose intolerance too) etc?  Do I just eat bowl after bowl of rice and peas and corn and pray for the best?  I need to start absorbing some nutrients!  I'm barely gaining weight (which is ok-ish, but not great) and I'm in for IV iron tomorrow... 

Gut microbiome
lucy
rainarana
A heads up to anyone interested in what's living in your gut.  I think it's safe to say that most of us here are pretty fascinated with all things gut, and here's a chance to participate in an open sourced research project to "characterize the microbial diversity of the American gut."  It's a bit pricey, $99 for a DNA extraction, and yeah, you have to collect stool samples.  You also have to give them a detailed diet log for at least three days, longer is even better.  And they're particularly interested in people following specific diets, including gluten free, but also veg*n, paleo and any combination thereof.  The results will be available some time next year.  I've signed up, so I can share if anyone here would be interested.  

American Gut Project

The best gluten free bread to use for stuffing/dressing?
Cheetah
disturbedme
Hey, all.

I was just curious what brands of GF bread you like and think is the best to use for stuffing/dressing?

I forget what brand I used last year as I also used gluten free cornbread mixed in.

This year I want to make a sausage stuffing (I have the recipe, just need suggestions on the type of gluten free bread to use).

Thanks a bunch!

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