Shell156

Oh wow,  I dated A LOT a few years ago while being gluten free, and ate out as well.

I was always nervous to tell people but if they accepted it without much hoopla, I pretty much knew they were a good guy. I also had to explain I couldn't kiss them if they had eaten gluten but it always went over well

As far as dealing with restaurants go, I'd call the restaurant beforehand and talk to the manager if possible and explain the full severity of my allergy so that when I got there, I could just say, "I'm Richelle, I spoke to you on the phone earlier about the serious food allergy." 

That way I didn't have to make a big deal in front of my date. I don't have allergies to dairy but my gluten allergy is more sensitive than anyone I've ever met, so my eating options are very limited.

Hopefully you'll be able to have a little more fun on dates! If I could give my 20-something self some advice I'd say just enjoy this time and don't worry as much. I know that's not easy to do when you're in it but I really wish I had worried less.

one question: your doctor gave you an official celiac diagnosis based on a gene test? Did you have to push to get it done? My doctor says he strongly suspects celiac but he can't diagnose me without me doing a gluten challenge, which would probably kill me.

Hey Dan,

I replied to your other topic as well and gave a suggestion for a multi that works well for me!

I am extremely sensitive to gluten and react to lots that doesn't seem to bother other celiacs. For example a a restaurant in Vancouver that caters to lots of celiacs made me really sick. They say served tons of celiacs without issue (including their own chef!) but when they checked into their raw ingredients they realized the walnuts for the salad I shared with my boyfriend were "made on shared equipment with products containing wheat". I only ate like 4 walnuts and apparently other celiacs ate lots without issue.

Anyway, I wouldn't doubt your strips. I think a lot of supplement companies label "gluten free" but may use shared equipment or not consider their raw ingredients. 

Here's the link for the vitamin company that's never made me sick:

Open Original Shared Link

Wow, Hellbender! Thank you so much for testing these and posting the results!

I am very sensitive to gluten. I haven't ever had a problem with megafood and I feel better when I take their women's multi.

Here is a link to the men's multi!

Open Original Shared Link

What?? Country life isn't safe? Oh man. I have a ton of their products,

I bought them after getting glutened from a now brand supplement they claimed was gluten free.

Has anyone else gotten sick from country life?

Thank you! Sunshine burgers sound so delicious I'll go get some and try them out !

Do you know what I miss so much at summer BBQs? Veggie burgers. I don't mean the ones that taste like fake meat, I mean those ones that are made from grains, beans or legumes, maybe some cheese. Does anyone have any suggestions? I'm quite sensitive, so certified gluten free is best, but I'd be happy to research non-certified suggestions as well.

Do you use personal care products that your daughter does not use? 

While my blood tests were okay while I used regular personal care products, I still felt terrible. My blood tests were in the okay zone (14… should be >20)

I realized at some point I was reacting to my personal care products. I switched over to certified gluten free products and I felt so much better. I did this slowly, but you might want to change your soap and shampoo and maybe try no other products and see what happens? I use hugo naturals, desert essence organics, Red Apple Lipstick etc...

My blood tests also went down afterwards, from 14 to 8. I don't know if that means anything, just thought it was worth noting.

I should mention that I wrote the company but I never heard back. Oh, Thailand !

I tried them both! No reaction, yay!

But the Durian was hard to get down ;-)

Hi everyone! 

Does anyone know any brands (preferably readily available) to which they do not react? I am unfortunately very, very sensitive to trace amounts of gluten and its derivatives, including distilled liquors and "gluten removed" products.

Does anyone know of a certified gluten free brand?

Richelle

Hi there!

You sound like me a little after I went gluten free. The weight loss started to worry me when I weighed less than I did at 13!!! Crazy, huh?

The thing is, when my BMI was about 19, the weightless just stopped. Maybe this is what a healthy weight is for me? I didn't look particularly overweight before, but I did want to lose weight. After being at this weight for 8 years now, I realized I quite like it! I'm small boned so a BMI of 19- 19.5 looks fine on me.

Is your BMI below 18.5? I wouldn't worry too much. I couldn't lose weight before going gluten free either, I think my body was starving for nutrition! Afterwards, I just became a healthy weight and stayed there.

Hi there!

Has anyone ever had a problem with frozen fruit?

I haven't , but I have been buying the expensive, organic, packaged in Canada fruit. In my store, there are mangoes and durian packaged in the Philippines and Thailand, respectively.

I really want to try this fruit but I'm nervous. Has anyone ever had a gluten reaction to frozen fruit?

I love Japan!

I lived there for a few years before I knew I had celiac disease but I knew I was allergic to wheat.

My first night there, I went into a convienience store and a lovely person taught me the kanji for wheat and its pronunciation: ko mugi ko.

Knowing this helped me a lot. I can't comment in restaurants there but I will tell you that Japanese people were very lovely and helpful in regards to my allergy, however, since allergies are rare there, many people did not understand and would say: "oh, you're allergic? So you don't like bread? But you eat cake and cookies, right?"

Apparently it's quite common there to say you have an allergy to things you dislike. So be sure to emphasize the medical consequences to your child of you can . Good luck!

Hi everyone!

Well… it was awesome! Everyone was so kind and thoughtful and it went well. I think I got mildly glutened once, but I think it's because we had to buy some unfamiliar brands (all labeled gluten free… not all certified). One mild glutening in 2 weeks is pretty par for the course for me, as I am extremely sensitive and may have an allergy rather than celiac?

However, I had a terrible allergic reaction to something that is not gluten! My gluten reactions are very recognizable to me and this was different. I had horrific hives and eczema all over for more than 2 weeks. It was so awful. I still don't know for sure what got me.

Just wanted to say thank you everyone for all your help and thoughts!

I've never gotten sick from just hugging someone, but I have gotten sick from hugging someone and getting their hair in my mouth! I guess I hug a lot and I wouldn't have thought anything of it but after a few times I was researching and hair products have terrible amounts of gluten in them. Boo. I am super super sensitive. Most people would never have to consider such a thing but I'm just sharing my experience so you can feel less alone.

Wow, I used to dream of this! Even a city would be so great.

I have been putting Italy on my map because they apparently have a very high awareness of celiac. However, definitely not gluten free!

I went to Turkey and gorged on figs, fresh juice and plain fish and really enjoyed it.

But a place with no gluten at all… hmmm… I read of a recent study in Tanzania, I believe where they were studying the microbiomes of traditional hunter/gatherers. These people did not consume western foods. The scientist even ummm… tried injecting the microbiome into himself! Fascinating.

However, I don't know how much of a gastronomic experience you will have. I think it's mostly plain meat, manioc and foraged veggies.

Aww… I haven't gone yet but I think I was worried about nothing. I saw everyone this weekend and they offered to stop by Costco (because we fly in there late) to get me anything I needed to stay healthy. I super enjoyed spending time with them and now I'm looking forward to the trip even more!

I thought the offer was so thoughtful and caring. I'm so lucky! And grateful :-)

I think one of the reasons I worry is I've just had not so great experiences in the past so I get scared. Now though, it might be just me worrying. I'm super looking forward to spending time with all of them and they just seem really understanding :-) Yay!

Thank you again for all your thoughts and help everyone!

Oh wow, I used to have this! I know how frustrating that can be...

I just started really paying attention to my body and what kinds of things I was reacting to and days that were worse or better.

About 8 months into my job, I noticed it was the WATER at my work making me sick. I don't think it's gluten… but I stopped drinking the water at work and began bringing bottled water. No more sickie. The tap water at my home didn't bother me. Beats me why! 

Do people eat gluteny things in the space where you are working? Do you touch your face or put on lip balm with your finger tips?

Are you eating near people with gluteny items? I didn't figure it out for awhile, but crumbs get brushed off of hands, people gesture wildly while holding a sandwich etc etc… if I eat with gluten free people I don't get sick, with a gluten-full table, I get sick maybe 30-50% of the time. So I just at some point decided the horrible stomach pains and D were not worth it. There have been more things I've had to cut out doing at work and it's been getting better and better for me there. The thing that sucks is that it's somewhat isolating :-(. 

Weluvgators gave a pretty thorough response ! I'll just leave you with: I've totally been there :-(

Oh wow I lived in Japan for awhile. I didn't know I had a problem with gluten back then (2003) but I knew wheat made me sick.

I swear I had this conversation like 1000 times:

Me: I can't eat the bread, I'm allergic to wheat.

Them: Oh, you don't like bread? But you eat cookies and cake though, right?

Me: No, no cookies or cake or bread, I get really sick from things made from wheat. I like them, but I'm allergic.

Them: You don't like bread OR cookies OR CAKE ???!!!!

Me: No, no, I like them, I wish I could eat them, I'm just allergic. I can't.

Them: Oh.

Me: Yes.

Them: But you eat cookies sometimes, right?

Bahahahaha honest, this is what it was like! That being said, I believe rice vinegar is okay for sushi but please double check. I haven't run into wasabi with wheat but I would leave it off just in case. Finally do not eat Japanese mayo! It contains wheat :-(

Have you tried Justin's peanut butter cups? They are certified gluten free and really, really yummy!

I know it doesn't mean a ton, but I am super sensitive and I don't react to them :-) 

Wow, these are awesome. Super grateful to all of you that took the time to answer so quick! I already feel better.

BlessedMommy- thank you for the thoughts and ideas, I feel more confident knowing you were healthy all weekend. Also, cutest name ever!

T.H. - Thank you too so much for your super lovely, thoughtful and thorough response. I ADORE the pudding idea. I want to do that! I think asking my boyfriend first about things is the best idea and I'll probably just explain the pudding thing to him. He'll get it and decide what to share. I trust him. I may steal the pudding idea for my classroom… there are so many allergies and it's such a great, visual way to explain! Thank you for being so understanding :-)

Beth01- I can see how that would work! I'm not sure how to get that idea across though to people I don't know as well… do you have any ideas? It's pretty clear though… I mean I have struggled with explaining to people in the past and that does make it pretty clear! Thank you!

So weird how hard it is to explain something that really hurts us, eh?

One thing I forgot to mention… there will be a very adorable toddler with us. About 2 years ago, a toddler I adored stuck her hand in my mouth after eating cookies. I was caught completely off guard but I suffered for weeks (maybe even months… it got better slowly) I don't want to run away from this little guy, but not totally sure how to explain I shouldn't be cuddly with him if he just ate cookies/muffins/etc?

Hi there everyone, 

I don't think I've posted on this section of the board before. My boyfriend invited me to go away on a Christmas Vacation with his family! I'm so, so looking forward to it but I'm a little nervous because I've only met them a few times (they live 4 hours away). They seem really great though, so it should be fun!

Here is my problem: I really, really don't want to get sick because my problems are pain and neurological… I get depressed, snappy, teary and kind of feel crazy. Once I heal this all goes away 100%. Not an awesome (almost first) impression. I also desperately don't want to inconvenience his family in any way or make them feel uncomfortable at all.

I don't see though, how I can have both. I wish it weren't so but I'm extraordinarily sensitive. I would probably have to have my own food prep area and I wouldn't be able to sit at the table with them if the meal is very gluten-heavy. I got very, very sick the first time I visited them, likely because I wasn't vocal enough about how sensitive I really am. I'm scared they will feel weird if I'm not eating with them but I want them to be able to eat whatever they want!

I tried explaining to his mom on my second visit that I wanted to find a way to not inconvience the family or make them feel uncomfortable. I was trying to say I could eat separately and maybe a few days my boyfriend and I could cook dinner for everyone and we could all eat together!

I think (hope) she misinterpreted me somewhat because she seemed tense and upset and (I forget the exact words) thought I was trying to make the whole family go gluten free :-(

I tried to explain I wasn't saying that at all…  I really want everyone to have whatever food they want and enjoy. I tried to explain that, but I'm not sure she believed me. Hopefully that doesn't cause problems...

Any advice? What can/should I say that will be really clear and not make anyone feel bad?

I react to products used in my hair and skin but when I switched to gluten free ones I stopped getting sick . I don't know why but my best guess is that I have longer hair and it gets in my mouth, or if I work out sunscreen/moisturizer /makeup may run into my face?

That's just a guess! All I know is I get sick when personal care products aren't gluten free. I can tell you the story of how I figured it out cause to be honest, I didn't believe that I am as sensitive as I am for years .

Anyway I totally understand wanting gluten free hair dye. I usually use light mountain natural henna. I buy it from amazon. It's kinda messy though but it's worth not feeling sick!

I also used garnier a few weeks ago without any problems at all. I had bought it about a year ago and was scared to try. However I was really careful to keep my hair away from my mouth while rinsing so that's not a guarantee!

Hope you find something good in Dubai. I know this isn't the forum for it but I'm so curious about what it's like to live there!

Aww... Poor kid!

This has definitely happened to me! I was using a face cream a couple of months ago that was labeled gluten free. I usually pay really close attention to how I feel after using new products and I felt okay! So I kept using it. After 2-3 weeks I started feeling really crampy and fatigued. I finally wrote the company and they said they used "gluten-removed " products, which I do react to! I stopped using the cream and voila , I was all better . The company however, refused to give me my money back

Hi Steph ,

Here... I just copied and pasted your first paragraph from your last post? It's in the last sentence!

"It can be difficult to get people to take this seriously. Some will believe that it isn't real no matter what you do. I find the best doctors that I can to stand behind my children and I. It helps to find out what medical documentation can be provided, and have the doctor do that. It helps to find peer reviewed published research and to provide that to those involved as pertinent. "