Aly1

By the way, realize that this is a hard adjustment for your hubby too. I think you need to have a heart to heart with him and let him know just how hard all of this is for you, and how much you need him to understand that you don't have a choice here - its not like you're being a picky eater. It sounds like maybe he doesn't fully get the reality of your illness and is resentful of the difficult situations it's creating. Be understanding of how he's feeling, and really explain the gravity of the situation and how it's all affecting you. If you do that in a totally open, non-confrontational way he will hopefully be able to hear you. And maybe the two of you can come up with some creative ways to handle the things that come your way. Good luck!

My in laws don't really get it but I found that if I say "My doctor says I can't have it" it makes a big difference. A lot of people put a lot of weight in what docs think/say. You might try that so that it looks like the doc is depriving you of something you'd ordinarily want...

I am going to a Superbowl party this weekend - the first social event I've been to since going gluten-free. I haven't figured out what I'll say yet but I do plan to eat well before I go and then stick to water while I'm there...

If I find out that I have to cut more foods out of my diet, I will go crazy. I can barely eat anything now as it is....plus, for a person that is a recovering anorexic, having to continually cut foods out of your diet makes it even harder to stay on the path to recovery....

I am also at the stage of things where I am still narrowing down the things that are affecting me and am also frustrated by the dwindling foods available to me! But - I am not also recovering from an eating disorder, that makes the situation all the more difficult. You have my sympathy! I hope you are getting the support you need during this difficult stage; just try to keep in mind that it's a stage that will pass and you will get to the point where things stabilize and you feel good again! Good luck to you.

Oh and thanks for the heads up that the B12 should be between my toes! I will give that a try.

smart chick!

The trick is for the reader to be able to differentiate between what is the "norm" and what is "unusual" in people's experiences.

You are wise enough to know the difference, obviously. --(although the real trick, Aly-- is to put the B-12 tabs in between your toes, not in your bra! )

And you are so right---there is still much to be learned about gluten intolerance and celiac. We do rely on each other for knowledge that is lacking.

As many have tried to point out already, not all people reading this site are clear-headed. They are seriously ill. When I first came on, I read a few things that were misleading. (info about fruits and vegs, canola oil and food labeling). I thought I had all kinds of intolerances, was being glutened by things that could not possibly harm me, etc.--based on well-meaning but ill-informed people. How is a newbie supposed to know? Fortunately, other, more experienced posters cleared things up, but I was confused and needlessly alarmed. I am not stupid, but at the time, I was ill and malnourished and desperately trying to get well and would have taken any advice at all.

So when someone questions a post or a statement that seems unfounded, it is not always meant to be critical, it is a request for clarity for the protection of the general membership.

If someone is downright rude or snarky, well, that's a different matter and is unacceptable and that should be addressed. The average person will apologize if they are told their tone is out of line.

But I have also seen many cases where the poster was not at all rude, but the READER misinterpreted the intention of the post. I have also seen people on a gluten challenge for testing purposes be very defensive and emotional while posting and when they admit it, we all say "oh that explains it!" All is forgiven!

The written word is so easily misconstrued.

It's so true, sometimes we read things into people's posts that aren't there. Generally I have to say that this board is overwhelmingly positive, friendly and supportive. I think it's a special place that way. I have been on another board that a handful of people turned into a pretty negative place to be. So my view just may be a bit colored by that experience!

I think what we on the board try to do is get someone to cite their source. It's up to each individual person that's interested in the topic to go to the source and decide for his or herself if they feel it's valid enough to believe.

Oh don't take me the wrong way - I definitely see the value in asking people to cite their sources. It's all about how it's asked... some people are sounding a bit militant and I think it might disuade some people from bothering to post for fear they will be called upon to defend every little point. I definitively have held back from posting to certain conversations because I just don't have the energy to spar, and that's the tone that's been set on a couple of posts recently. I assumed that was what AVR 1962 was referring to.

Hi, there's a big post right now about exactly this in the Post Diagnosis forum, fyi

My tummy got flat after 2 or 3 months of gluten-free - but now at 5 months it's suddenly ballooned up again. I've been trying to figure out if I've been doing anything differently and I can't say that I have. I can't figure it out. Hope it goes away again !

I also have not had any testing done but have found that I have reactions to corn in any form. Ive just discovered I also react when it's in a highly processed form like fructose (sugar-like sweetener derived from corn. I can't tolerate regular sugar and prior to going gluten-free I used fructose for years without issues.). I've been feeling lousy and thought it was cc issues, but when I removed fructose from my baked goods I started feeling so much better. I didn't think such a highly processed form of corn would be an issue but for me it is.

OB I wish we'd had that, it was a terrible blood draw . Next time.

One other point I forgot to make: The whole thing about backing every little thing up with official research. Research in the area of GI is really far behind what many of us on here already know. If we only followed published research, then those of us with NCGI would not have "existed" before 2009, and largely still don't if you look at the medical community at large. So while I always appreciate having research to back things up, for me I think there is a grayer area where people's personal experience is really valuable. If all I wanted was PubMed docs I could get that elsewhere. What I am here for is living breathing individual experiences that fill in the blanks where current research is lacking. Official research is icing for me, not a requirement...and if someone tells me that slipping b12 tabs into my bra each morning will give me a boost, I'll be sure to research it myself before proceeding!

Hmmm, I am relatively new to the board but I have to say I kind of agree with AVR1962. Seems just recently there's been quite a lot of slightly biting posts. I've seen them and the negativity has bothered me but I generally prefer to avoid such things online so I stay out of it and don't reply. There are lots of reasons why people might...annoy...with their over-the-top anxieties or baseless claims (which are being offered from a genuine place of trying to help) but it seems to me that sometimes there are people who are all too ready to pounce with the claws out instead of in. There are gentle ways to tell someone they're wrong (and don't get me wrong, I've seen that in action too!) but just lately there's been some thinly veiled yuckiness on here. Which I only say because I have found this to be the singularly best forum I've been a part of with the most amazing people in it. It's a shame when people inject a yucky feel to their replies, of being superior or what have you.

I hope you can get the gist here of what I'm saying, I am having a hard time finding the right words. Yuckiness isn't quite right .

Just jumping in with a little note about King Arthur's flour which you mentioned being nervous about. Not sure if you are oats sensitive but if so, this is not the flour for you as they process oats in the same facility as their flour.

Yes, what ravenwoodglass just said! I did not touch any alcohol for over 3 years because I found it made me so ill and I would have 3 day hangovers from just a few drinks, even if I had it on a full stomach. After going gluten-free I read about gluten and grains and alcohol, and wondered if that had been the problem - it was! I am totally fine wih potato vodka.

I wish I had that problem. Since I went gluten free my sleep is even worst, I wake up at 3-4AM and cannot go back to sleep. Get out of bed unrested and yawn all day long.

That's me too. I've always had problems but was taking an herbal supplement that really helped; once I went gluten-free it didn't do a thing for me, I have to take a Benadryl every night in order to sleep the night through. Doc says that's ok but who wants to take a drug 7 days a week to sleep! :0P

...well, you have one already, hon-- otherwise how do you sit??---or did you mean you want "some junk in your trunk"?

Oh no, some of us really have no butts. Just legs that go up to the trunk, nothing in between!

Omg I'm just catching up, congratulations! That's the best surprise ever .

So, it's confirmed my appointment is in Florida. I asked if they got the faxed medical records. They put me on hold for quite a while, then came back and said they didn't get any medical records..and they MUST have them! I was given the fax # and was told to have the Dr.s office send them to that #. I called and asked them to do it and they said, sure no problem.

I wonder where my records went the first time? I sure hope they get to the right place this time.

I had clothes set aside for cold weather travel. I don't know if I have any warm weather clothes that fit?

Hubby is changing our travel plans. Nothing like a good dose of stress to get the old heart beating?

What a pain! It's a good thing you asked if they got them!

Oh man, why did someone say pierogies. I love pierogies. I am now having a major craving!

He does have a strong opinion but I dunno, he has a patient sitting in front of him who's pretty messed up for her age, who he believes if we make some changes will be able to get out of her wheelchair and resume a normal healthy life...his way of getting her there is to create as pure an internal environment as he can. Pure foods in, good supplements, the body begins to heal itself. Surely no one here is trying to argue that alcohol is healthful (other than as a stress reliever, which if course has some value if really needed, which is not the case for me)?

Please keep in mind the context of this doc's opinion is important: I am *only* talking in the context of a really sick person - not your everyday person (or celiac) who is stable in their health, there's a big difference. I know in the context of this forum you will read that his opinion on alcohol is about celiacs and alcohol but it's not - he is NOT a celiac dr - he is an internist who specializes in medical mysteries. His patients are people who all check out as "healthy" in mainstream medical testing but who are terribly ill nonetheless. They come to him when modern medicine fails them. So, derive from that that a lot of them are people who are very sensitive and get sick from things in their diet or environment that would not harm the average everyday person. In that context I don't think he's being over the top - he's advising a course of conservative lifestyle to give the body a chance to heal, while the person figures out what things are making them sick in the first place. And as I said before, 10 years of being told by docs they can't find anything wrong with me to put me in a wheelchair, but there I was, and very weak and ill too - he's the only doc that said "I think I can help you" and HAS. Where would I be in my healing if I'd ignored his advice to go gluten free?? (I was convinced that would not have much impact on my health. Good thing I put him in the driver's seat!!) Because of that, his opinion wins in my book. I don't have to like it.

Oh good, thanks I wanted to make sure I wouldn't gluten myself if I trusted the brand. Thanks

Phooey, nobody? I have several in my cupboard and don't know whether to risk them or throw them...

By the way, the article posted above does state "...alcohol

I'm just saying what my doc said to me. Can't post studies to back it up because I only have his opinion. Which I value because he has helped me more than any other doc out there and has already made a huge improvement in my health. So if he says he thinks it's a bad idea for me in my current state to have a weekly drink, I am just going to go with it, as his judgment thus far has been excellent.

When I mentioned to my doc yesterday that I enjoy 1 vodka drink per week he was...appalled. Keep in mind that I am quite sick and have a long way to go healing-wise. But he told me to cut it out 100%, that he believes it contributes to leaky gut. Doesnt even want me to take a sip of my hubby's wine! He said when I'm healthy I could consider a regular drink (not what he'd advise though, he views alcohol as a poison to our systems).