dani nero

I still don't get it. Even if you ask them about being gluten-free or explain it to them.. what if they don't get the idea about CC from the pans and you get glutened. How do you the waiters don't understand that if they touch bread or whatever they can't handle your food after.. or am I just taking CC too seriously?

BTW, I have traveled to Europe a few times now since my diagnosis and it can be done without cheating. All it takes is great planning.

Since you're an experienced traveler, can you give an example scenario for educational purposes. Let's say (for example) you're going to Italy in a month. What would your planning involve, and how do you do it. My last trip to London involved a lot of starvation. I came back feeling, acting and looking like a hungry bunny, and I think I did manage some CC in the end.

I so agree with MitziG

It all depends on how much you need to be formally diagnosed VS. how much you don't want to experience your symptoms again.

If you can't live without the money off or having proof on paper of your condition, and you don't mind going through your symptoms again (which might be hitting back a little harder depending on how long you've been gluten-free) then go for the challenge.

There are perks to each side, it's up to you to decide which perks are more valuable to you.

I also didn't get any GI symptoms in the beginning of my diet, so it was hard to tell if I ever got glutened. I did go to restaurants at first, but I learned in the end that avoiding them completely gives me more peace of mind and saves me the trouble of having to figure out why my mood is swingy or why I'm constipated. I enjoy picnics with friends and hubby now. I make appealing little bento boxes to lift the experience and make things more fun. It doesn't matter where we're sitting to me, as long as we're having something good together and chatting.

I'm sorry if this wasn't what you wanted to hear though. If you really can't give up going to restaurants then it's really just about going the extra mile to make sure they're not giving you anything contaminated, and that means that they've prepared the food using equipment and surfaces that are not shared with the ones used to prepare foods that do contain gluten.

I just learned from repeated unfortunate incidents that I can't trust them unless they've washed their hands before touching my food, and it's hassle to explain WHY.

They say that even the smallest amount of contamination will cause a reaction. How much damage is caused.. well they also say it's enough damage to be taken seriously.

Hi everyone. I was diagnosed 3 months ago with celiac disease after 30 years of suffering and being diagnosed with other things. My symptoms are incapacitating migraines and terrible fatigue. I am excited to maybe have relief and have actually enjoyed some very good days. 11 so far out of 3 months. I am having trouble, of course, with finding the foods without gluten. I know now that foods that say gluten free are probably not for a celiac. I love chicken and I hope you all can tell me what I need to know. Can you have store bought chicken? I've read they inject chicken broth. I bought a "natural" whole chicken from BJ's and now feel terrible. What have you all found is always safe. Right now I eat tons of salads and fruits. Is there anything else I can trust so I can heal? I am 54 and have had this as long as I can remember.

It sadly has to do with a lot of trial and error and what the board members told me was the "learning curve". If you buy something that made you feel bad you'll know to avoid it, and in time you'll learn what you want to avoid and what's ok. Also you've only been gluten-free for 3 months after 30 years of having your body damaged, so it might not be the BJ chicken that caused you to feel terrible, but just residue symptoms. It takes a long time to heal sadly.

Are you taking any supplements, enzymes or probiotics, and are you keeping a food journal? All these things are the tools of the trade for celiacs haha :-)

I find that the best thing to do when there is a new type of food I want to try is: First of all I don't try lots of new things at one time so that I know which new thing caused the reaction, and secondly I contact the company by calling them to ask if their products may contain even hints or traces of gluten because I'm super sensitive (even though I'm not really :-P).. but just to make them know that I don't want any amount of traces in my food. If they say it's free of traces I try it, and then I wait the next two days before trying anything else. If all is well after two days, then I know it was ok :-)

As for the anything else things you can eat, I'll leave that for the others to suggest because I myself am currently not very creative in that department. I'm hung on a few specific foods atm!

Good luck and welcome by the way!

What symptoms do you usually experience? You might be feeling off because you're worried you did a bad thing. Honestly.. and it's just what I think.. you go on vacations to have a good time, and not experience nervous breakdowns.. so even if you did get yourself mildly glutened, you still lived, enjoyed, and experienced so many things, and it's not like you can change anything about it now. Besides, you don't do this every other month or anything.. it's just this time right? If your off-ish-ness gets worse you'll know there was contamination, otherwise, I think you should just enjoy the memories you've gained :-)

I heard from board members that when glutened, the best you can do is drink lots of water and double up on probiotics for a week. I hope you don't get worse though!

The rash on your neck can be DH (Dermatitis Herpetiformis). You could have been glutened from cross-contamination as Adalaide stated. Do you know though how soon your reactions start by the way? For some it's the same day, and for others it's the day after. I used to react after two days but not it's less. So it could have been something you've eaten yesterday too.

I would revise that to say that many cheap brands contain wheat. In higher end foods you are more likely to see rice. Pearled barley does appear in some top tier brands, and oats are sometimes included. Read the ingredients. The most common wheat source in dog products is in biscuits, not food. There are many wheat-free biscuits available, but they will cost a lot more than a MilkBone.

Thanks for the correction :-) All bunny pellets contain gluten except for Zoopreem (sp?) regardless of their price-range, which is why I thought it would be the same for dog food.

ravenwoodglass posted a link here to an article on testing that looks VERY promising, too bad its not in use yet! They can challenge the cells in a dish and get an accurate diagnosis! If they get this into production, no more gluten-loading!

Yay! :-) More possible magic buttons!

You asked about people with no symptoms having the tests. I have to go back next month and have my daughter's blood work retested and she doesn't have any symptoms. They want to make sure her Ttg level has gone down. Maybe that will prove to them that the diet is working? Or that I am being compliant? I am not sure myself but we are going back.

I read a very disturbing thing on another message board today. (I was just lurking) A lady had an 11 year old like me with no symtoms. Her doctor told her after a year of gluten-free, that it was her call if she wanted to continue it. The child's vitamin and mineral levels were fine, she was growing and gaining weight, and no symptoms. So the mom is letting her eat what she wants now. They told her it was "her call". Although I have wondered the same thing outloud, I would be scared of the other diseases and infertility. I guess no one explained that to her.

No symptoms doesn't mean no celiac sadly :-( I hope your daughter's tests come out clean!

I'm guessing then that the ttg test is the one they do when they want to check. THanks for the info :-)

Yay for a magic button! Yeah boy!

Unfortunately even if the blisters are surfaced it doesn't mean they will be any help. It's a sucko disease is what it is. Yes! We need more studies!!!!!!! But I will say this Dani & I believe it is true. I believe that it won't be toooo many years down the road before they come up with a way to diagnose celiac disease without us having to glten ourselves so bad first. In fact, Nora, posted on one thread that in Norway they have been doing it in one hospital in particular for several years now where you only have to gluten yourself one time. I will try to find the info. & post it here. Here it is --- read the thread -- she even provides a link further down for the techno medical info.

https://www.celiac.com/forums/topic/93232-so-clueless/

And here is the techno stuff on it:

Open Original Shared Link

Maybe you could travel there & get it done! I'm serious! I don't know how doable that might be for you but you're a heck of a lot closer to Norway than we are here in the U.S.

Yes, we're close to gluten-free at the same time. I get a little depression or anxiety once in a while still but not to the depths that I was. It's like the difference between day & night. And I definitely feel like that will go away soon. I also get a little snappy once in a while still but I'm not trying to bite someone's head off anymore.

Omg! It's almost like you've just shown me the magic button :-O Yes of course I'll be going there if it's a sure bet and even if I have to pay a whole year's worth of salaries! I sadly can't seem to be able to focus reading in more than one board at a time so I do tend to stick around this one, and do miss a lot of posts :-) You're an angel Squirmingitch!

Dani dear, you have been gluten-free too long for a biopsy of the rash to be positive. And just eating some crackers to make the rash appear will not do it. You DO have to go full scale glutening yourself even for the dh biopsy. I'm sorry but just like your blood tests they will turn up neg. b/c you have been gluten-free.

Lord knows, I wish that were not the case. I have been gluten-free too long. I still get some blisters & some "bites" even low sal & had to go low iodine for the past 2 weeks just to have a few days relief. But I KNOW that a biopsy of the dh would turn up negative. Not only that, but there is a 37% false negative. We are beat before we even get to the starting gate. But I will tell you that if I had it to do all over again; I would do the same thing. I was far, far too miserable to go even one more day before going gluten-free. And I have been soooooo much better since. I have never, ever been a depressed person NEVER! Always found something good, always had a smile but I was extremely close to putting a bullet in my brain & it was ALL gluten. Now I can't even imagine how I could have entertained the notion of such!!!!!! It's like it was a bad nightmare & I awoke to find it wasn't really real. You know?

So even if the blisters are surfaced doesn't mean they'll be any help? Goodness what kind of a disease is this. I'll say one thing, they're not studying it hard enough and I object ;-(

Yeah I really do know the feeling. I used to have these over-the-board panic attacks that would turn me into the hulk haha :-)

We both went gluten-free around the same time right? You're just one/ two months ahead of me.. Are you getting depressed or anxious at all lately? I find that I'm still getting some down-days .. a lot milder than before thankfully but I'm still not completely anxiety or even depression free.

Don't you wish there was magic-button that would take away all this :-)

I didn't get periods at all when I was on gluten, and get them regularly with slightly less bleeding now that I'm gluten-free. The only thing I notice about my periods is that they are more painful if I had been glutened somewhere around their time. Sorry that I can't help any more :-( Hope you figure it out!

Thank you for the replies. I was in a very bad mood after back-to-back pizza nights for my children's preschools. We ended up not going because I am not buying a pizza we cannot eat and also bringing a gluten free pizza that tastes horrible! If anyone knows of a good gluten-free pizza, let me know. Homemade Pizza Company is good but I get cross contamination.

And to the previous poster, I don't cheat and have gluten. Sorry I didn't make that clearer. I cannot take care of my kids if I have gluten. In fact, I can't even get out of bed unless you count laying on the bathroom floor vomiting and sweating profusely from the rotational vertigo. The Celiac Center at U of MD put me on a very strict diet. I am to avoid even processed gluten free foods and other grains. It just gets old.

I just need to suck it up, I know. It just gets very difficult sometimes.

Awwr.. why is your pizza sucky-tasting :-( That's no good! There are so many amazing recipes out there. Have you checked around the forum for easy pizza recipes?

Being gluten-free doesn't mean food needs to taste bad. I do understand you suffering for having to be away from even gluten-free processed foods since I'm in the same boat right now, but it does get easier to forget about the stuff in time when you're feeling healthier and happier. Just keep in mind that your body-type just can't handle the processed stuff, which is why you're off it for now.

I'm sorry Dani, how frustrating!

I have found I have to be pretty demanding with doctors. As in a pain in the butt that makes them roll their eyes when they see your name on the schedule....

I don't care. I am paying THEM, so they work for ME. I very specifically call and request the tests I want when I schedule the appt. And then the dr tries to tell me I don't need them. And I insist. And sometimes the dr is right and the tests are fine. But sometimes they are wrong and the tests show a problem. (This of course is validating and makes me want to wave it in their face and go 'ha, I told you so!"

But really, they don't care. And I have learned to stop caring if they care. I am in charge of my own health now, and I only need drs to sign the paperwork to gett the tests I need to doctor myself.

I have become much healthier and happier since doing so. If I had listened to my doctors I would still be fat, depressed, exhausted and zitty! And medicated.

You will get better. But it takes awhile. Hang in there!

It seems that doctors here are a little more strict with patients because a lot of people try to get away from work by claiming they're sick. Medical care is also almost free here so I really can't treat the doc as someone who's being paid by me.. although in the end, their salaries do come from our tax-money, and taxes are really back-breaking here haha :-)

I don't know why I have an aching need to know for sure. I do feel better compared to how I was just two months ago, which is great :-) I don't mind being overweight really haha.. as long as I'm able to move as much as I want to.

I didn't know people tested to see if the antibodies were gone, is that the number they give when first diagnosing you? saying oh your number is 16-100 or w.e ?

Interested to see how this unfolds.

Some people who don't experience any symptoms get tested every 6 months to make sure they're in the clear. I would say it's the same test when first diagnosed, but I'm only assuming :-)

ive been IFing. for very long time.

even muhammad says to eat one meal every other day.

you guys really are stepping outta your territory to come over and say all this stuff how its dumb and yadd yadda. when youve never heard it, researched it, etc etc.

you eat your 5 meals a day. eating is just self medication. a ritualized drug. gluten free or not.

What they're trying to tell you is that it doesn't matter if you're eating just once or a gazillion times a day. The problem isn't how many times you eat, but what you eat. If any meal you consume contains gluten, and you do have celiac, it will cause damage to your body.

Just a pointer though in case you decide to cut all gluten from your diet. If your dogs eat dry dog food, make sure to check the ingredients, since most brands contain wheat and have been a problem for some of us here.

I got a letter from the doc today. She stated that the antibody levels were normal as she expected, but that the metabolism test results are high, so she has ordered further blood tests. I have no idea what that means.. Does it mean that the test itself shows high values.. or my metabolism is? There is no way I would have a high metabolism since I'm generally always overweight.

Since I'm a positive person (and I'm saying this after throwing a small fit haha), I'm taking this as good news. My gluten-free diet has been effective.

What is bugging me though is that she didn't call herself to tell me of the developments, so I couldn't ask her about doing testing to see what supplements I'll be needing. I am still getting days where I feel sore, fatigued and bummed, and I want to have more energy. I deserve to have more energy. I don't want to spend most of my time sitting or lying down.

What confuses me is that some people without symptoms do tests every 6 months to make sure they're anti-body free while being on a gluten-free diet, and they can still test positive. Which type of test do they usually take?

I'm not going to do a gluten-challenge, because there is no guarantee I'll get positive results even if I do it.

I'm still a stubborn person however, and I don't know why, but I really desire proof that I do have a condition. I'm going to try talking them into taking a DH biopsy. I'll eat a little gluten just before the appointment so it shows up. If it's DH then I'll know for sure.

Aww! What a great and bright post. Thank you so much for sharing this with us, and congratulations + well done for reaching your balanced and healthy lifestyle. Hope it continues for you :-)

Don't feel bad about it and don't beat yourself up. I'm not saying eat gluten whenever you feel like it though.. A celiac eating gluten is equal to a healthy person eating spoiled food filled with germs.. The only difference is that the healthy person's antibodies will attack the germs, while our antibodies will attack us haha :-)

Just accept that you slipped and life goes on. One month is too short time for you to get used to the new lifestyle, and you'll get there eventually.

To most of us here going near gluten makes us so sick we never want to go near it again due to how lousy and crappy we feel for over a week, and I know that's where I'm getting my determination from.. It's not due to will-power or anything ;-) I just hate being moody, bloated, constipated, fatigued and god knows what else more than I hate the restrictions in my diet.

I actually started getting the occasional nightmares about me eating something with gluten in it ever since I started. I think I've had the nightmare three or four times already, and boy was I relieved when I woke up because it wasn't real lol.

Just give them a small history lesson in celiac. It was discovered ages ago. There's nothing new or "thingie" about it. It's just what it is. If people care less about educating themselves by actually reading rather than just watching silly shows, why should we bugger ourselves over it ;-)

My whole family except for my mom and hubs don't believe me, and I'm still in the process of making myself care less about what they thing.

We need to relax, care less about their "oh so insightful opinions" that come from daily shows, and enjoy our journeys to good health being gluten-free :-)

I focus on what I have, what I can do, and what I can eat rather than what I don't have, or can't eat, or can't do. I've learned to be thankful for what I have before it's gone.

The primary thing keeping me focused right now is school. Returning student after a several year medical leave of absence. I was so sick, and so financially strained, I thought I'd never be able to go back.

Agreed with IH, your post is very inspiring. Thank you for sharing it. I feel like working even harder on late school projects now. Hope all goes well for you too :-)

I have been gluten free for 2 months now, at least as far as I know, but havent seen any improvement in the constipation situation. Does anyone know if it is possible to still see improvement in this if I havent already? I know someone else who saw immediate results in this area.

Maybe your tummy bacteria are out of balance? Are you taking any probiotics? Or you might be reacting to something else other than gluten. I know that stake gives me mega C for example.

Here are more positive vibes:

I'm glad Stevia exists!

I'm glad I'm having bowel movements (lol!)

I'm glad God made lots of colorful things for me to look at. I LOVE colors :-P

I'm glad I can eat mangoes without getting bloated or agitated.