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What Do You Do At A Wedding?
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  I can't say enough about how comforting it is to read through all the posts on here. Sometimes when I'm down or glutenized, I just read through them till I feel better...

  My question though is what to do you if you have to attend a wedding? At my own wedding the catering was amazing and provided me a truly delicious gluten-free meal (with sauce!). The chef was trained to cook gluten-free by taking an additional culinary course--praise to them.

  But my cousin is getting married in June and my husband's friend the week before that. I'm thinking of replying that we are both coming, but that I won't be eating. I think I will stuff myself with food beforehand and just drink champagne or wine at the wedding. I've learned there is not one restaurant I can eat at safely (well, ok one). The rest are not an option and I'm in tremendous pain if I get glutened. I'm thinking that's the only safe option.

   Also, for the other wedding we have to travel so it is very difficult to stay safe when traveling and then also with a wedding in the same trip. I'm thinking of buying food at Whole Foods and stocking up, eating before that wedding too...

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Yep..you are right on track.  Eat before hand and stick something safe in your purse..a banana, candy..whatever.  

The good thing about wedding is that people are either a little tipsy from the drinking or they are dancing and having fun.  No one will even notice that you are not eating.  

:)

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I have a wedding to attend at the end of May and it is for a family member so it was easier for me to address my food issues with them.  I have a different attitude about it all and I really think that if people are going to have a wedding or a party, in other words, they will be a host, it is up to them to make sure there is safe food for ALL of their guests.  This is old school and I am sticking with it because I think it rude to invite someone to a wedding and then not care to make sure they have safe food to eat.  I disagree that no one will notice that you are not eating.  I have been to events where the fact that I was not eating was noticed and it made people feel very uncomfortable when they are stuffing their faces and I am not.  It wasn't very fun for me either because if you aren't eating, then just drinking alcoholic beverages is kind of out because I have to be eating when I drink.

 

The wedding I am going to is for my husband's niece who we do not have much of a relationship with.  No one in the family does, either, so in all honesty, it's kind of an expensive trip for someone we are not close to.  But we are trying to be supportive so there you go. My husband contacted the bride and told her that I was a diagnosed celiac and needed to have a dedicated, gluten-free meal.  The reception is in a restaurant so we thought that would make it a bit easier for her, rather than a caterer.  The bride then told us that there were other gluten free eaters coming, along with vegertarians, so it shouldn't be a problem.  The fact she lumped the gluten-free eaters in with vegetarians clued me in she was clueless.  The reception is a buffet, with gluten-free options.  My husband contacted her again and stipulated that I could not eat off of a buffet and needed a cooked meal, with my input to the servers at the time of reception.  I mean, really, this is a restaurant and they do cater to Celiacs...how hard can it be.  I was willing to do all the work.  The end result is that the bride agreed to this, although she got snarky about the extent to which I go to ensure a safe meal.  She, like many others, just do not understand but I expect that.  I am wondering if she got snarky with the vegetarians and, as it turns out, the other gluten-free eaters are the fad diet kind and they will be eating off the buffet.  That explains the lack of understanding but I pushed it because I want to educate people about the realities of gluten-free dining.

 

Not everyone can go this far at weddings but I am getting a little sick and tired of not being accommodated for by family.  I am still bringing some food with me because we arranged for a suite at the hotel, with a fridge and microwave.  All my other meals will be home cooked and packed.  But as we are spending a lot of money to attend this out of state wedding, and they will be receiving a wedding gift, I want a wedding meal like everyone else. 

 

If you cannot be pushy and obnoxious like me, ;) , then I say secure a place with a microwave and fridge and either eat before hand or maybe you can bring home made and someone can re-heat it for you.  I hate not eating with the crowd because of the 5,000 quesions I inevitably get or the fact I am a thin celiac, they all think I have an eating disorder.  <_<   I like to party like everyone else and need food so I can drink.  No way will I not drink my red wine at a wedding!  :D

 

This can all be very difficult and highly dependent on whether there is gluten free dining knowledge but you'll have to adjust what you do depending on that, and other factors.  Good luck!

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I totally agree Gemini! I'm not the kind of Celiac to try to blend in. I find it offensive as well, but the culprits to me are the caterers and restaurants. They should be able to cater to Celiacs in our age. Really, we can send a man to the moon and have iphones and ipads, but not cater to Celiacs? In fact, I plan to tell everyone at both weddings that I'm not eating and if they don't notice I will tell them and I will highlight that no one caters to Celiacs. I want to be visible and I'm very angry that I can't eat a safe meal when yes, we are giving a gift like everyone else and covering costs of travel.

  Being a bride in August though, I know how hard and stressful it is to pull together a wedding and I won't bother the bride or groom about this. I know many people don't know about Celiac disease, but the restaurants need to be held accountable. I have been to so many restaurants that say they are gluten-free only to suffer dearly days later. I really wish I could sue or there could be a law passed to cater to Celiacs. I mean if you're traveling, sometimes it is a choice of starving or being extremely sick, that is immoral in a society that has plenty. I feel so so bad for diabetic Celiacs. That must be harder still because their blood sugar has to be maintained.

  So yes, I think it's immoral and disgusting to feel like I'm abnormal because I'm not eating and feel like an outcast because I have an illness. That is so wrong. But on the bright side I call so many companies all the time about this and if I have to attend a restaurant with friends I go to the manager and tell them I'm not eating there because they can't properly accommodate Celiacs--all this to get them going and thinking that something has to change and eventually it will. I think we all need to speak up more until something is done. :-D

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I've  been to many  receptions  of  sorts , only  one  had  a  gluten-free  menu with a  couple  of  appetizers  not  gluten-free....Most  were  family   &  friends  events  that  know  my   gluten-free  restrictions. But, I  think  they  forget about  the  dietary issues   when  they  are  busy  with  the planning. No, I don't  think its  okay    that  I'm usually/always  forgotten  until  the  time  when  the  people  see  I  have  nothing to eat  then the bell goes  off....

So  what  I do  is  contact  the  carterer or the  restaurant  on  my own  &  ask if  they  can do  a  gluten-free  meal...I  even offer  to pay for  it  myself  but  I always  stress  that I don't  want to bother  the  host/bride/groom....

I  know  many  state  it  is  the  social  part  that  we  should  focus  on  but  after  ten years  of  that  it is  old .....I  want to  enjoy  a  meal  I  don't  have  to  prepare  too...

I  find  if  the  host  does not  have  issues  then  they never  think  about it much....family for me  is the  worse  not  ever having  a  gluten-free  option .............

Do  a  bit  of  research &  question  asking  &  one  can usually find  out  who  is  preparing  the  food for the  event.....

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My best friend is a chef and runs a catering business and she has said many times, It's not that hard to accomodate a Gee Freer and be mindful of cross contamination, too.

.

What's the big deal? she says....most meals are Filet or chicken. Pick the filet and tell the mother of the bride to call the caterer you have celiac and remind them who needs what. She does it all the time and finds it not to be an issue at all. (see why I think she's awesome? LOL

 

I am attending my cousin's daughter's wedding in June-- out of state ---and like Gemini, I have a hotel room with micro and fridge booked (I do this every time I travel) and

I spoke with my cousin's wife and made sure she understands what I need to eat safely. She was very gracious about it

and there are 7 other Gee Freers attending, one is my Mom and another is my cousins's wife who I am very close to, so I suspect we'll all be dining together  at the same table :)

 

I am not worried because I know my cousins realize how sick I was before DX and they will make damn sure I am taken care of.

 

 

(But you can bet your ass I'll have my Crunchmasters in my bag so when the cheese platters and hors d'oerves some out, I'm prepared. :) ).

 

Traveling is not that difficult, honest. I just did ot for 5 weeks, unscathed.

Get a Koolaton cooler for your car, bring food and use the Find Me Gluten Free app to find places to eat.

I am a pretty sensitive celiac and I have had great luck eating out in places that other celiacs recommend,

Don't be afraid to be assertive  yet polite. Do not go into it thinking "I'm being a pain in the ass" or "they will not be willing to help me".... you'd be surprised how much people want to be accommodating if you approach it the right way.

 

Nobody "owes us" anything really just because we are celiacs and we can be gracious about it.  I can honestly say I have not had anyone give me the "eye rolls" when I explain politely and calmly what I need.

 

Good luck! :)

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  I can't say enough about how comforting it is to read through all the posts on here. Sometimes when I'm down or glutenized, I just read through them till I feel better...

  My question though is what to do you if you have to attend a wedding? At my own wedding the catering was amazing and provided me a truly delicious gluten-free meal (with sauce!). The chef was trained to cook gluten-free by taking an additional culinary course--praise to them.

  But my cousin is getting married in June and my husband's friend the week before that. I'm thinking of replying that we are both coming, but that I won't be eating. I think I will stuff myself with food beforehand and just drink champagne or wine at the wedding. I've learned there is not one restaurant I can eat at safely (well, ok one). The rest are not an option and I'm in tremendous pain if I get glutened. I'm thinking that's the only safe option.

   Also, for the other wedding we have to travel so it is very difficult to stay safe when traveling and then also with a wedding in the same trip. I'm thinking of buying food at Whole Foods and stocking up, eating before that wedding too...

 

Yup - I bring my food (and eat before hand).

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I wish that were true...I have had too many experiences when servers and managers promise me my meal will be safe and I'm completely glutened over and over and over. It's always the same--they smile and promise and then I'm in pain and out for a week. I'm always polite, but I always speak up and that just never works. Restaurants and catering are completely out for me forever...unless I move to California or out west. I hear it's different over there.

  And I absolutely think something is owed to Celiacs--absolutely. We deserve respect as much as people with diabetes and other diseases and we  deserve to sit and eat at the table with everyone else. I know a few Celiacs who have no social life because they are too afraid to go out. So sad. There was a little eight year old girl who went to an Olive Garden and was told she was getting gluten-free pasta, but they gave her wheat pasta...she was in the E.R. for a week. So sad. Hopefully more will become informed...

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I don't trust anything at an event like that. Eat before you go. Being food. Ask if you can have a clean plate and eat your own food.

People may ask, but give them a quick explanation and move on!

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I totally agree here with eating before you go and bringing anything with you you might want to have. it's your body, I wouldn't trust anything that comes out of a catering mass produced kitchen.

 

I went out of town for a wedding, brought a backpack filled with food and ate before the wedding. I found a great place to eat on Find Me Gluten Free.  no one noticed, literally no one, that I wasn't eating. it gave me more time to dance!

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If I can't trust a product off the shelf even though it would appear gluten free, I would never expect someone else to cook for me gluten free without me telling them specifically what products I can eat. The chef could simply use a product that says gluten free but isn't free enough for your level of sensitivity, or that isn't labelled with 'may contain traces', and that's how you get the gluten. Might not have anything to do with how the food was prepared. Even fancier restaurants that do everything from scratch will use spices that would appear safe but might not be. 

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I wish that were true...I have had too many experiences when servers and managers promise me my meal will be safe and I'm completely glutened over and over and over. It's always the same--they smile and promise and then I'm in pain and out for a week. I'm always polite, but I always speak up and that just never works. Restaurants and catering are completely out for me forever...unless I move to California or out west. I hear it's different over there.

  And I absolutely think something is owed to Celiacs--absolutely. We deserve respect as much as people with diabetes and other diseases and we  deserve to sit and eat at the table with everyone else. I know a few Celiacs who have no social life because they are too afraid to go out. So sad. There was a little eight year old girl who went to an Olive Garden and was told she was getting gluten-free pasta, but they gave her wheat pasta...she was in the E.R. for a week. So sad. Hopefully more will become informed...

 

 

I am sorry to hear you have had such horrible experiences. :(  California is not the only place that "gets it right".

I do not know where you live, but NYC, Boston, Florida--these places are good about gluten-free dining.

 

I did not say we don't deserve respect.

Not at all.... and believe me, I am a  huge celiac advocate.  

I said we are not "owed" anything--as in, we have to ask specifically for what we need for our meal to be safe.

 

If I did not think someone could handle it, I would eat beforehand, too, but I'm not going to make a big fuss about it.

 

 I have never had a problem if I call ahead, speak to the chef or the manager. The only time I got burned was at a 99 restaurant.

 

You asked, "what do you do at a wedding"? and I told you what I am going to do.I know my request will b honored as I spoke to the people in charge. 

If you feel more comfortable taking your own food or eating beforehand, go ahead. I don't blame you one bit!

 

And yes, it is very sad about the little girl (but I would not trust my child's health to a chain restaurant who specializes in pasta and bread either)

We all make responsible choices about what we eat. and  I do not think people should never socialize or leave their homes because they have celiac. That's no way to live. This is  just IMHO.

 

 

I happen to know that Gemini went to a wedding last year and she was served extra special food and dessert and all the other diners were jealous :D 

Sometimes, it pays to be gluten free.

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I will say that at my own wedding last december, I didn't seem to get a gluten reaction, not that I really had a good idea of what my gluten reaction was. Because I was also not feeling well in general around then anyways, but I was also eating at other people's houses (gluten free of course, specified lots of things, washed dishes beforehand, etc) and not being as strict as I am now in my own kitchen. It's become increasingly clear to me, from what I assume must be dh flare ups, nerve pain, tiredness, flu-like symptoms and even slow healing intestines, that my standards weren't good enough.

 

There seem to be people who can eat out at many restaurants just fine, or eat at a friend or family member's house just fine. I used to think I was one of them because I never got that 'glutened hit'. But the chronic, low-grade symptoms were all still there, and I don't think I'm one of those people anymore.

 

It really depends on your level of comfort and if you think you can trust chefs, you know, more than 50% of the time.

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There seem to be people who can eat out at many restaurants just fine, or eat at a friend or family member's house just fine.

 

I think we can eat out at some restaurants just fine and at the homes of those friends and family who take the time to learn about cross contamination. (I do not trust just anyone) :) I help them prepare dinner and  I bring dessert, because those are tricky for people.

I bring a flexible cutting board for them to use. The friends who understand celiac and gluten have never caused me any problems.

 

It's all about our choices, how we inform others, and the reliability of those we place our trust in.

 

In the end, we can choose how much our lives are defined by celiac or how much we do in spite of it.

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Had to laugh - not at anyone - but I live in California and we have the same issues with eating safely as every other celiac on this planet.

Sure there are pockets of our state that do better than other parts of the state - but I think this is the same everywhere - I've had wonderful experiences in NY state and Illinois - I've found rural areas superior to big cities.

For me the key anywhere is being polite, gracious but most important FIRM!

Plan for the best, prepare for the worst - I think you'll be pleasantly surprised how often you get the best :)

 

Edited to add:  My entire life I have lived by the hope for the best, plan for the worst theory -- I changed it a bit since learning to eat safely in this world --- same idea -- just needed a little fine tuning ;)

Edited by GottaSki
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what do *i* do at a wedding?  I DANCE!  VERY BADLY!  lolz :D

 

i do call ahead of time.  i don't trust someone else to call (except my hubs) because they won't ask the right questions.  if they sound absolutely clueless, i ask for someone else.  i get everybody's name!  if it sounds like they are never going to get it right, i ask them if i can bring my own cooler (that way i bring my own beer too bwah hah haaaaa and anything i want!) and keep it in the kitchen.  just put 'gluten free' on it you could put a million dollars in it and nobody will as much as open it ;)  sometimes i will just eat ahead of time and not fool with the cooler, bring cheese & crackers or whatever kind of snackie thing i want, and drink a bunch of wine.  helps with the dancing....

 

Plan for the best, prepare for the worst - I think you'll be pleasantly surprised how often you get the best :)

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what do *i* do at a wedding?  I DANCE!  VERY BADLY!  lolz :D

 

i do call ahead of time.  i don't trust someone else to call (except my hubs) because they won't ask the right questions.  if they sound absolutely clueless, i ask for someone else.  i get everybody's name!  if it sounds like they are never going to get it right, i ask them if i can bring my own cooler (that way i bring my own beer too bwah hah haaaaa and anything i want!) and keep it in the kitchen.  just put 'gluten free' on it you could put a million dollars in it and nobody will as much as open it ;)  sometimes i will just eat ahead of time and not fool with the cooler, bring cheese & crackers or whatever kind of snackie thing i want, and drink a bunch of wine.  helps with the dancing....

 

 

laughing here -- because of the "trendiness" of gluten-free -- don't want to get into that -- but my kids friends ALL want my food when i bring it along -- I just label things with my name and -- please do not touch

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what do *i* do at a wedding?  I DANCE!  VERY BADLY!  lolz :D

 

 

  :lol: not I, notme. I can dance my face off. The hubs, er ....not so much. He sort of stands there and I dance around him.We make it work. LOL

 

 

I meant to add, because I know there are going to be several other Gee Freers at this wedding, I am bringing them 

some carrot cake/buttercream cheese frosted cupcakes I will make in a cooler so that when everyone else eats the cake.

we can have ours,  too. I'll just duck out and grab them from the car. 

 

I drink booze so no need to drag the beer with us. 

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I don't trust anything at an event like that. Eat before you go. Being food. Ask if you can have a clean plate and eat your own food.

People may ask, but give them a quick explanation and move on!

 

It really is a shame when you trust no one in the catering/restaurant business because there are many that do an outstanding job.  And if you educate yourself well, then you'll be able to weed out the ones who may not do such a good job....long before the food reaches your plate.

 

I attended a wedding in NY in the Hudson River Valley in 2011, and it was for a friend I worked with.  The caterer was a fancy schmancy one, located in Manhattan.  Very highly trained chef. My friend took care of everything and as we used to dine out together in Boston, she knows exactly how careful I need to be.  The food was incredible.  Four courses of very inventive dishes and all very gluten free.  I am extremely sensitive yet never even had so much as a burp afterwards.  It was mainly beef, veggies and fruit for dessert but she did an amazing job with everything.  And because I didn't fill up on starchy crap, I was the only one not complaining their stomach hurt from all the rich food.

You have to have friends who are celiac savvy and they do exist.  I would never trust my gut to someone who wasn't.  You also need to have a caterer who went to a good culinary school because they do know food better than caterers who just set up a business because they are good cooks....not the same thing.  Many culinary schools now have courses in gluten-free cooking and food prep......the CIA does.

 

I did not mean to imply that Celiacs are owed something.  My stance comes from the way I was brought up.  It was considered rude in my generation to not provide good food for anyone who was invited over. If I were getting married today, I would never even consider not taking care of someone with a food intolerance and I would never hire a caterer who couldn't meet that request.  Luckily, I live in New England and it is an area that leads in the gluten free world.  We have many good options here and if I can eat out successfully, the vast majority of celiacs who don't have multiple food intolerances can.  You just have to do your homework.  I also got pushy with my husband's niece because of the fact she was getting rude and snarky about it.  Being busy with planning a wedding is no excuse. You invited both of us, now provide us with a safe meal.  We are supposedly family....I am not asking non-family members to do this.  My husband is also gluten-free but is not as sensitive as I am and not diagnosed officially so sometimes he will eat off of a buffet to keep the family peace.  That annoys me but that's a topic for another day.  Do not make fun of the extent I go to for a safe meal at the wedding you want me to come to.  Do you make fun of a diabetic when they request a certain meal?  Probably not, because many cheat and then adjust their insulin.....which is not an option for a Celiac.

 

The one good thing about this is I put my foot down about the meal the night before the wedding too and I am going to Rissoteria in NYC.  According to GPS, it's about 2 miles across the river from where we will be staying. It's Mecca for celiacs so that's where I am going, regardless of wherever else the rest of them eat.  They cannot seat more than a party of 6 so that means the wedding party will have to do different groups to different locations for dinner.  There are no set plans for the dinner before the wedding so far and, with the wedding only 5 weeks away, I am not waiting for them to make a decision.  We'll see them all at the wedding and the day after so I am psyched about going to Mecca!  People need to stop worrying about offending anyone in order to obtain a safe meal.  Sure, some of it will be eaten in the hotel room but I have a life and want to eat out like everyone else.  NY is an awesome town for gluten-free....like Boston.  I am taking advantage of all the options.

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I did not mean to imply that Celiacs are owed something.  My stance comes from the way I was brought up.  It was considered rude in my generation to not provide good food for anyone who was invited over. If I were getting married today, I would never even consider not taking care of someone with a food intolerance and I would never hire a caterer who couldn't meet that request.  

 

 

People need to stop worrying about offending anyone in order to obtain a safe meal.  Sure, some of it will be eaten in the hotel room but I have a life and want to eat out like everyone else.  NY is an awesome town for gluten-free....like Boston.  I am taking advantage of all the options.

 

Same in my house, I have always catered to people's various food preferences (long before I was Dxed) and I continue to do that.

That's just being a gracious host. (I did not interpret your post as saying you felt that way, BTW. It was another one. I just sort of bristle at the thought that as celiacs, we think we're automatically "entitled" to something. )

 

If I were getting married tomorrow, the caterer would be  making whatever was necessary---and doing it safely--for my guests. 

 

Gem, I'm going to send you my long list of NYC places people have generously shared with me via email. You're gonna have a blast!!  ;)

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You have already gotten quite a few great responses.  I'm just going to add a quick response too since we have had several weddings in the past year & I have had the same issue. 

 

Usually the wedding invitation states who is catering...I have had good success calling the cateror or restaurant myself & just asking if they are familiar with g.free & if they can offer a g.free alternative.  I can tell pretty quickly if they know what they are talking about or if I need to eat beforehand & make sure I have a purse full of food with me.  :)  I get really sick too if I get glutened.

 

Since I LOVE chocolate, I do bring a piece of chocolate of some sort in my purse...otherwise I feel sorry for myself not getting that wedding cake...ha! 

 

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Same in my house, I have always catered to people's various food preferences (long before I was Dxed) and I continue to do that.

That's just being a gracious host. (I did not interpret your post as saying you felt that way, BTW. It was another one. I just sort of bristle at the thought that as celiacs, we think we're automatically "entitled" to something. )

 

If I were getting married tomorrow, the caterer would be  making whatever was necessary---and doing it safely--for my guests. 

 

Gem, I'm going to send you my long list of NYC places people have generously shared with me via email. You're gonna have a blast!!  ;)

 

What a dope I am!  I should have asked you when I was searching for places to eat.  I originally was trying to find places that I could suggest to everyone that would accommodate us all but then started getting the whiners complaining about the cost or it wasn't this or that so I just cut bait, made plans for the gluten-free people in the group and the hell with everyone else.

They haven't even made up their mind about a bunch of details yet and we are 4-5 weeks out.  I hate that...... :lol:   Celiac's can not be that spontaneous with their food, can they?

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I have a headache and need to get a few things done, so I haven't read all of the above comments.  I'm sure they are brillant and a touch humerous. ;)

 

Here's what I would do:

 

I would talk to the caterer.  If they sound like they have a clue & it sounds like food that wouldn't have gluten in it, I would plan to eat the food.  When I got there, I would assess the situation.  Maybe talk to the server and explain about getting sick.  Then see what she/he says.  Talk to the caterer at the dinner.   If it looks good.  I would go for it.  I would bring a dessert because I doubt there would be a gluten-free one.

 

Here is what I would do , just in case -I would bring something that will be filling like some nuts, a Lara bar, little PB packet and crackers, etc.  And something really fun - like Fritos or chocolate or some treat you don't eat often.  This way, if the caterer says "I forgot" or it looks dicey, you have something filling and something fun.

 

I always, every day,  keep some nuts or a nut bar with me.  You never know when you might get stuck somewhere and be hungry.  Even just going  to drop something off for your kid at school - the tornado sirens go off and you can see the funnel cloud and get stuck in the school for an hour until the storm blows over and its way past your lunch time & your getting a headache from not eating.... (really happened to me). :ph34r:

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and I always have Jif to go cups and Crunchmasters in the car. Plus, when we travel, I have a Koolatron cooler in the car, too. 

 

Like, Karen, if I do not eat, I do not feel great and a headache will follow.:(

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I am sorry to hear you have had such horrible experiences. :(  California is not the only place that "gets it right".

I do not know where you live, but NYC, Boston, Florida--these places are good about gluten-free dining.

 

I did not say we don't deserve respect.

Not at all.... and believe me, I am a  huge celiac advocate.  

I said we are not "owed" anything--as in, we have to ask specifically for what we need for our meal to be safe.

 

If I did not think someone could handle it, I would eat beforehand, too, but I'm not going to make a big fuss about it.

 

 I have never had a problem if I call ahead, speak to the chef or the manager. The only time I got burned was at a 99 restaurant.

 

You asked, "what do you do at a wedding"? and I told you what I am going to do.I know my request will b honored as I spoke to the people in charge. 

If you feel more comfortable taking your own food or eating beforehand, go ahead. I don't blame you one bit!

 

And yes, it is very sad about the little girl (but I would not trust my child's health to a chain restaurant who specializes in pasta and bread either)

We all make responsible choices about what we eat. and  I do not think people should never socialize or leave their homes because they have celiac. That's no way to live. This is  just IMHO.

 

 

I happen to know that Gemini went to a wedding last year and she was served extra special food and dessert and all the other diners were jealous :D 

Sometimes, it pays to be gluten free.

That's so great. I really think Celiacs needs advocates and I'm so, so passionate about promoting awareness. I see those pink ribbons everywhere and others for other causes and I wonder, where's our ribbon? So May is coming up! May is Celiac month so I hope everyone will wear the green ribbon because this is definitely one illness not enough people are aware of.

  But I totally see your point about staying positive. I love the book, Gluten-Free Girl because she points out that having a positive outlook really helps us cope.

  So glad to hear others' experiences, especially regional differences. I live on Long Island and try to get food in NYC and it is so awful. You would think NYC would have truly gluten-free food, but it seems only one restaurant is truly safe for me--Risotteria. If you get a chance to go, go. It is delicious. Try their red velvet cupcakes. Oh, so good. I suppose it all depends how sensitive each person is. I'm sadly becoming so sensitive and it's so frustrating, but I know I'll find solutions.

  One of the best, best things about being a Celiac is that when someone cooks awful food I have the best excuse in the world not to eat it! Ha ha. :-) It has also made a me a cook, a foodie and a health nut and I love that.

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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