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Any Good gluten-free Friendly Restaurants Outside Of Disney In Florida?


Kara'sMom

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Kara'sMom Explorer

We're going in early May to Disney World and if I weren't stressed enough...DD's blood work came back positive for Celiac. Now awaiting results from biopsy but have started gluten-free...today is day 3 and she cried before going to school (she's 9) b/c she wanted to eat lunch there. Oh, the long road ahead of us.

Anyway...I'd like to eat outside of the park for dinner (to save money) so any suggestions would be great.

Thank you,

Mary

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buffettbride Enthusiast

Margaritaville Orlando on Universal CityWalk has had several raving accounts of gluten-free experiences.

Here is a previous thread about it:

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Kara'sMom Explorer
Margaritaville Orlando on Universal CityWalk has had several raving accounts of gluten-free experiences.

Here is a previous thread about it:

Open Original Shared Link

Thank you so much!

Mary

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whitney728 Newbie
We're going in early May to Disney World and if I weren't stressed enough...DD's blood work came back positive for Celiac. Now awaiting results from biopsy but have started gluten-free...today is day 3 and she cried before going to school (she's 9) b/c she wanted to eat lunch there. Oh, the long road ahead of us.

Anyway...I'd like to eat outside of the park for dinner (to save money) so any suggestions would be great.

Thank you,

Mary

I don't have any experience with eating outside of the park, but Disney is more than accommodating when it comes to celiac disease. (There are a lot of past threads on this board attesting to that.) A nice treat for your daughter, if she's having issues with her diagnosis, might be to have breakfast on the property somewhere...I went to a character breakfast where they made me gluten-free Mickey waffles. I think you have to call ahead, but they were incredibly helpful. I was 18 and this still made my day, so I'm sure something like this would be fun for your daughter.

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Kat'sMommy Newbie

Hello There!

Disney is wonderful, call their hotline and talk to a rep. They sent me a list of what I could buy my DD at each stand in the parks. Of course the restaurants themselves are amazing, but you have to make the time for a sit down meal. I have been told they have allergen free zones in all their restaurants for making our meals and the like. They are fully trained and are even very aware of CC. Even at the Italian places there are great meals.

I would check with Universal and Sea World as well. I haven't been to them. A relative works at Sea World doing the beer education, and they include a gluten free sorghum beer, so my guess would be the park is aware of the need.

As for off the park, we still struggle with finding good restaurants. (We are only 5 months glutten free). However, we have every major chain so those that are gluten friendly, like PF Chang's, Out Back, and Carrabba's are available.

I have been told there is a deli downtown with a vegan, gluten-free, CF menu. I will look into the name and post again, but it would be out of your way if you are staying in the Park areas.

I would suggest contacting the Rainforest Cafe, It is a great experience for the kids. I have been told they are gluten-free aware, but I would call and talk to a rep there as well. Since they have 2 on disney property, a good response is likey.

As far as Fast Food. Chik-fil-a is wonderful. You can check out there list on their website. Just double check that they have a dedicated frier for the fries. I have not run into one yet that doesn't, but you never know. They will make a kid's meal for me with their grilled chicken for my DD, so she is getting what she was used to with the toy and everything, but no syptoms. I love this chain. Don't know if you have them near by. If you don't be aware they are closed on Sundays.

I hope you have a wonderful time. I know that travel is difficult, but Disney is the place to go if you have to do gluten-free. They are Fantastic. Have fun and Enjoy. If I learn anything I will post again. We are all learning and in this together.

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CaraLouise Explorer

Does anyone Disney's hotline for calling about gluten free food in the park? I am going to Liberty Tavern in Magic Kingdom at Christmas and would like to make special arrangements.

Thanks!

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Kat'sMommy Newbie
Does anyone Disney's hotline for calling about gluten free food in the park? I am going to Liberty Tavern in Magic Kingdom at Christmas and would like to make special arrangements.

Thanks!

They can help you at 407-WDW-DINE. Have a wonderful time. We will be in the park on 12/1. It is a wonderful time to be at Disney.

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Kara'sMom Explorer
Hello There!

Disney is wonderful, call their hotline and talk to a rep. They sent me a list of what I could buy my DD at each stand in the parks. Of course the restaurants themselves are amazing, but you have to make the time for a sit down meal. I have been told they have allergen free zones in all their restaurants for making our meals and the like. They are fully trained and are even very aware of CC. Even at the Italian places there are great meals.

I would check with Universal and Sea World as well. I haven't been to them. A relative works at Sea World doing the beer education, and they include a gluten free sorghum beer, so my guess would be the park is aware of the need.

As for off the park, we still struggle with finding good restaurants. (We are only 5 months glutten free). However, we have every major chain so those that are gluten friendly, like PF Chang's, Out Back, and Carrabba's are available.

I have been told there is a deli downtown with a vegan, gluten-free, CF menu. I will look into the name and post again, but it would be out of your way if you are staying in the Park areas.

I would suggest contacting the Rainforest Cafe, It is a great experience for the kids. I have been told they are gluten-free aware, but I would call and talk to a rep there as well. Since they have 2 on disney property, a good response is likey.

As far as Fast Food. Chik-fil-a is wonderful. You can check out there list on their website. Just double check that they have a dedicated frier for the fries. I have not run into one yet that doesn't, but you never know. They will make a kid's meal for me with their grilled chicken for my DD, so she is getting what she was used to with the toy and everything, but no syptoms. I love this chain. Don't know if you have them near by. If you don't be aware they are closed on Sundays.

I hope you have a wonderful time. I know that travel is difficult, but Disney is the place to go if you have to do gluten-free. They are Fantastic. Have fun and Enjoy. If I learn anything I will post again. We are all learning and in this together.

Thank you for the info. We LOVE Chik-fil-a but we haven't eaten out at all since we started gluten-free. Of course it's only been 10 days. We had no plans to ever eat in the park. Now that we have to some of the time...do you have to dress up? Are kids meals at the restaurants around 50.00 also? I'm still stressin! Mary

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Kat'sMommy Newbie
Thank you for the info. We LOVE Chik-fil-a but we haven't eaten out at all since we started gluten-free. Of course it's only been 10 days. We had no plans to ever eat in the park. Now that we have to some of the time...do you have to dress up? Are kids meals at the restaurants around 50.00 also? I'm still stressin! Mary

Before talking about travel to disney I want to encourage you. You sound like your doing better than I was at 10 days. I am only a few months in front of you on this, and I have made some mistakes, but it is getting easier and better. The difference in my dd is so amazing that everytime I think I can't do one more field trip, or meal, or dinner with guest, I look at her. I am even starting to replace some of my baking business with gluten-free!

Ok, lets see, Disney...

First, it is not just the sit down places that have gluten-free. The Turkey legs are gluten-free, and a big hit at all the parks. Pacos Bill has a gluten-free burger - with a gluten-free bun. I would guess that each of you could eat there for under $8 each. We always take water with us. Any restaurant will give you ice water when ever you need it, so just keep refilling the bottle to save on soda cost. ($3). One of the locations even has Amy's gluten-free pizza.

When you talk to the person at Disney they can give you a list of each place. If they don't, do what I did and send an e-mail request. It will let you know that the classic Mickey Ice Cream is gluten-free, and when your 6 that is a big deal!

As for the sit down restaurants. The dress is exactly what you would wear to the park. Some people of course will be dressed up, but that is so not necessary. The nice thing about the sit down restaurants is you don't have to seek someone out and tell them what you need. You tell the waiter and usually the chef comes to you table and walks you through it. I must admit, we always do the cheap version. We have not gone to any of the sit down restaurants since going gluten-free. In fact, most of our disney experience is out of the parks, at downtown disney and such.

As for cost. Every restaurant has a kids menu, so they are less expensive. There are also different catagories of restaurants so the prices vary. The mexican fast food is good at epcot and much cheaper than the sit down. Same with China. I am sure that each of them has something gluten-free so you are not relegated to the expensive ones.

The pizza place and the cafe are cheaper at MGM (just check that gluten free list.)

Some of the places will cost less than outback, a staple apparently for gluten-free travel.

Well, I think I have been rattling. (long day) so if you think of another question let me know.

Christine

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laurelfla Enthusiast

Wow, Kat'sMommy, that was an incredibly helpful post! I live near Orlando, so I guess I'm going to have to go to Disney now! Thanks for all the info.

P.S. Kara'sMom, Whole Foods north of Orlando has frozen baked goods you could keep in your hotel room for snacks and whatnot. Luckily I had a micro/fridge in San Antonio last weekend and was able to stock up and snack on packaged meals from the deli as well as muffins, biscuits and yogurt.

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Kara'sMom Explorer
Before talking about travel to disney I want to encourage you. You sound like your doing better than I was at 10 days. I am only a few months in front of you on this, and I have made some mistakes, but it is getting easier and better. The difference in my dd is so amazing that everytime I think I can't do one more field trip, or meal, or dinner with guest, I look at her. I am even starting to replace some of my baking business with gluten-free!

Ok, lets see, Disney...

First, it is not just the sit down places that have gluten-free. The Turkey legs are gluten-free, and a big hit at all the parks. Pacos Bill has a gluten-free burger - with a gluten-free bun. I would guess that each of you could eat there for under $8 each. We always take water with us. Any restaurant will give you ice water when ever you need it, so just keep refilling the bottle to save on soda cost. ($3). One of the locations even has Amy's gluten-free pizza.

When you talk to the person at Disney they can give you a list of each place. If they don't, do what I did and send an e-mail request. It will let you know that the classic Mickey Ice Cream is gluten-free, and when your 6 that is a big deal!

As for the sit down restaurants. The dress is exactly what you would wear to the park. Some people of course will be dressed up, but that is so not necessary. The nice thing about the sit down restaurants is you don't have to seek someone out and tell them what you need. You tell the waiter and usually the chef comes to you table and walks you through it. I must admit, we always do the cheap version. We have not gone to any of the sit down restaurants since going gluten-free. In fact, most of our disney experience is out of the parks, at downtown disney and such.

As for cost. Every restaurant has a kids menu, so they are less expensive. There are also different catagories of restaurants so the prices vary. The mexican fast food is good at epcot and much cheaper than the sit down. Same with China. I am sure that each of them has something gluten-free so you are not relegated to the expensive ones.

The pizza place and the cafe are cheaper at MGM (just check that gluten free list.)

Some of the places will cost less than outback, a staple apparently for gluten-free travel.

Well, I think I have been rattling. (long day) so if you think of another question let me know.

Christine

Thank you! Yes, I've gotten the list of gluten-free places to eat at each park. We're taking cereal to eat in our rooms each morning and figure we'd eat lunch in the parks. Then for dinner..we'd leave the park to save money but who knows now. Can you suggest any specific places in Downtown Disney? We're staying in Pop Century and since that's in Animal Kingdom and so is the Rainforest Cafe..I figure we'll eat there a couple of times. She loves spaghetti and lasagna and chicken parmesan and mac and cheese. So if you know of any place that has gluten-free pasta and might could whip her up one of those dishes...that's be great.

I'll tell you right now..if there's a way to save money...I'm doing it!! We're planning on taking in water bottles and snacks. We won't have a microwave and if we don't have a fridge in our room, we're buying one of those coolers that works as a fridge.

Thanks for all the advice! Oh....BTW..when did your DD start to feel better? Kara's been gluten-free for 1 1/2 weeks and she still feels the same. But then again..she had no syptoms in the first place. Just lost weight and she's still 54 lbs. I think i'm just hoping for too much too soon.

Mary

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Kat'sMommy Newbie

Hey there again, I hope today is an easy step on this path.

As for changes in your daughter, I am not an expert. I say look for the little things. It took a while for everything to baseline. But, for us inflamation was a big issue. In about three weeks clothes that weren't fitting before were baggy. She was calmer within days. She wasn't crying in the bathroom with in about 2 weeks maybe less. It takes time for them to heal, but every little milestone is wonderful.

I had another thought about Disney, since you are wanting to save money. Disney has a policy that individuals with specific health needs can have a cooler on property. They will even let you know what size fits into the lockers (A small fee). Since Publix Grocery Stores and Winn Dixie carry pre-packaged gluten free lunch meat (I don't remember the name brand at Publix but it is available in our Greenwise section and Hormel all natural at WD) why not pack lunch and then plan on eating a fast food or cheaper restaurant at the park where gluten-free is soooo easy to find. Just check with Disney on the cooler regulations. I believe the statement they forwarded me was on the gluten-free list for the restuarant. It would be justs at easy to stop at a store on the way into the park as to leave early enough to have a dinner off the park. OR look for a "five day" cooler to keep in your room filled with the supplies you need. The hotel might even be able to help you in some way.

The lunch meat, cheese squares (If milk or lactose is not a problem), lays potato chips, betty crocker gummies, carrot sticks, gluten-free cookies, or what ever you are use to would make a great lunch. I carry a "purse style" cooler everytime I go to disney filled with our "snacks". I never get questioned, but if I ever do I will just let them know of our special needs. I also make a gluten-free trail mix of m&m's, peanuts, and dried fruit, a good balance for sugar issues.

As for restuarants in DownTown Disney. I would have to look it up, and I will. It has been a while and I don't want to misquote. However, they aren't any cheaper than the park restuarants. I will let you know what I have if it is current. Or just check a list of the restaurants at DTDisney, and start e-mailing them regarding possible gluten-free menues.

I hope this helps, you will have a great trip and you will be so thankful that your coming to a place like disney that makes the gluten-free person feel like a star instead of the exception. Right now it just seems like so much because it is all so new.

Have a great day! Christine

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dionnek Enthusiast

Kara's mom - I just stayed at Pop Century last year and the food court there is great for gluten-free! Just tell one of hte workers your daughter needs to eat gluten-free and you need to speak to the chef/manager on duty about what she can have, and they will come out and talk you through what is safe. They make the gluten-free food separate (gluten free burgers with buns, french fries fried separate, excellent gluten-free pizza, waffles, etc.), so it does take a little longer than the rest of the food. I'd recommend ordering her food first, then have everyone else order/pick up there food if you eat there. We didn't go to the parks (wree there for a wedding), so I ate EVERY meal at the Pop Century food court. They also had prepackaged gluten-free brownies in the gift shop - I bought some for the road trip home and extra for home!

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Sailing Girl Apprentice

Hi Mary,

Don't know if anyone else has mentioned this, but: You might consider the Disney Dining Package (if you're staying on property, which I think you said you are). Disney is BY FAR the most Celiac-friendly place I've ever been in this country, and I suspect Kara will be much, much safer (and much happier) if you stay in Disney restaurants. The package gives you an incredible amount of food (a sit-down meal, a counter service meal, and a snack every day), and it's $39 for adults (tip included) and maybe half that or less for kids. In the sit-down restaurants, they'll even make you a special meal if there's something (gluten-free chicken fingers, perhaps) you want.

I'm a huge Disney fan and my DD and I go perhaps six times a year -- in part because we can eat there without any worries. I've NEVER been glutened by Disney.

Jane

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Sailing Girl Apprentice
Hi Mary,

Don't know if anyone else has mentioned this, but: You might consider the Disney Dining Package (if you're staying on property, which I think you said you are). Disney is BY FAR the most Celiac-friendly place I've ever been in this country, and I suspect Kara will be much, much safer (and much happier) if you stay in Disney restaurants. The package gives you an incredible amount of food (a sit-down meal, a counter service meal, and a snack every day), and it's $39 for adults (tip included) and maybe half that or less for kids. In the sit-down restaurants, they'll even make you a special meal if there's something (gluten-free chicken fingers, perhaps) you want.

I'm a huge Disney fan and my DD and I go perhaps six times a year -- in part because we can eat there without any worries. I've NEVER been glutened by Disney.

Jane

Sorry, should have said $39 A DAY. Shouldn't type in a rush ...

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  • 2 weeks later...
glutenfreewife Rookie

Where do I find the list? We're going in end of April/early May as well and I would like to know what is safe there.

Anna

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  • 4 months later...
CeliacMom2008 Enthusiast

We just returned today from Disney World and I couldn't wait to get back to share our experience with you all! It was AMAZING! I was so nervous to go. Our son was diagnosed in December. Since then we've eaten out two times, so the thought of a trip was very scary. We actually went for the Celiac-friendly restaurants versus the parks. The parks during spring break are more than I can handle.

As I've posted before, we've been struggling with wondering if he's being glutened, is dairy a problem, is he just not 100% healed, etc. So I went into the vacation with the attitude that he probably couldn't be any worse off at Disney than he was at home. Well it was incredible. Every day that we were there his stomach issues were gone. Our whole family was rejoicing that his bathroom visits were "normal"! Not only was he able to eat easily at the Disney restaurants, but he THRIVED!! If there is any way you can crunch the numbers to be able to eat as many meals as possible at Disney restaurants, I would highly recommend it. I can't tell you what an incredible experience it was. Now if I can just figure out how to keep my son as healthy as Disney did we'll be in good shape!

If you make a reservation you tell them right then that you have a Celiac dining. And get this - they actually asked me if my son was gluten intolerant/allergy or was he a Celiac. They actually differentiated it!! I'm sure it's all part of their market research, but I thought it was pretty neat that they had two options to check off on their computer screen. When you are seated you tell the server right away that you have a dietary restriction (if you've made a reservation it's already on the printed ticket the server receives from the hostess, but I always said it again). They are so polite and quickly say, "I'll get your drinks and send Chef out to talk with you." Every chef we met was so accomodating. Chef Karen at Spoodles even went above and beyond. The first day she and my son worked up a breakfast of french toast, eggs, bacon, and fruit (all at the kid breakfast price, BTW). When the syrup came I remember our latest cause for concern - syrup: is it gluten-free or not. I asked the waitress to check. She was gone quite awhile (telling me Chef Karen was checking). She then came back and said the label didn't list any gluten ingredients, but she also couldn't confirm that it was gluten-free. OK, we can deal with that. Day 2 - my son decides to skip anything with syrup because he didn't like Day 1's answer. Chef Karen comes to the table, they talk, he tells her he'd like to just have eggs and fruit and no syrup foods. She smiles this huge smile and says, "What if I told you today I have 100% pure maple syrup for you?" How great is that?!?!? Of course she was his hero from then on. He had the french toast every morning that we didn't eat cereal in the room and on our last morning we took a picture of him and Chef Karen together.

But she wasn't alone in Chef greatness! Chef Michael at Captain Jacks - my son really wanted shrimp alfredo and spinach artichoke dip. Shrimp alfredo wasn't on the menu (chicken alfredo was and so was a shrimp dish). Chef said he couldn't make alfredo because the alfredo had a rue (sp??) made with flour, but he could take gluten-free pasta, add sauteed shrimp and some butter and spices and make something very tasty (which my son said it definitely was!). As for that appetizer, Chef stood there and said, "Yes, yes, I think that could work...(deep in thought) and then said, no, no, it has Worstchestshire (again, sp??) sauce." He then tried to come up with a way to make it from scratch but had to give up when he realized he didn't have any spinach on hand. But I gave him huge thumbs up for trying.

Everywhere we went offered our son gluten-free brownies and ice cream. And he accepted every single time! One night we were on the boardwalk and wanted a treat. We stopped into the ice cream store (he'd been served ice cream all week, so I figured it was probably an option). They quickly said that they didn't have any gluten-free ice cream. :( But suggested we stop in at the restaurant next door to ask where we could satisfy his craving. The restuarant was one of Disney's Signature restaurants (expensive and fancy). I explained to the hostess what we wanted. She wasn't sure where else we could go, but she went to talk to the manager. She came back and said they didn't do carry out and didn't have any seats available for hours (and it was already really late), but that they were working on something. Remember, I had just come in asking for direction, not food. The manager came out and directed me to the chef. He offered up a cheesecake (which happens to be one of my son's all time favorite desserts). Crust made out of crushed almonds (my son's all time least favorite nut). I had to wait a fair amount of time, but it was fine. They were doing us the favor. When they brought the dessert out they apologized up and down for making me wait (it couldn't have been more than 15 minutes, probably more like 10) and said the dessert was on the house for the delay. I tried to pay, but they refused. My son ate every last morsel (almond crust included) and said it was terrific.

I know this is getting terribly long, but I didn't want to just say, "They're great. They get it. You'll love it." You just had to have the whole story! And it was like that almost everywhere we went. We did go to one place that wasn't bubbling with the kind of attention we received at all the other restaurants, but the food was gluten-free, the staff understood, etc. The chef just wasn't as super friendly (and he might just have been really busy or tired, or whatever). He wasn't rude by any means, just not touchy feely, warm fuzzy like all the rest. And I had a huge headache, so it might have been me more than him.

For Sea World, Aquatica, Bush Gardens, Discovery Cove (all owned by same company), I would suggest taking a lunch. They talk the talk, but I didn't get the feeling they "got it". I'm new, so I'm not the best judge, but I didn't feel as comfortable with their food. They have a "no sandwiches" policy at Aquatica, but as soon as I said my son had Celiac Disease and there was nothing he could eat inside the park they said OK with no hassle.

Oh, lastly, we made a loaf of gluten-free bread before we went, froze it and then took it on the plane. It thawed obviously, but we re-froze it at the hotel and used it to make PB&Js for the 3 lunchs we were at Sea World owned parks. Also, I would not have expected any problems with asking the Disney people to make a PB&J out of their tapioca bread for a sack lunch if we'd have needed it. They were that accomodating!

Enjoy your trip! I hope it is as fantastic as our was! I think we'll be at Disney for all of our vacations from now on!

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    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease diagnosis through additional tests. Understanding the specifics of your condition can help tailor your approach to managing it more effectively. Food Sensitivity Testing: While blood tests for food sensitivities can provide some insights, they may not always be completely accurate. As mentioned by others, false positives are common, and individual responses to specific foods can vary. Discussing your test results and symptoms with a healthcare professional knowledgeable about celiac disease and food sensitivities can help clarify your situation. Research and Education: Exploring conditions like Mast Cell Activation Syndrome (MCAS) and histamine intolerance could shed further light on your symptoms and provide additional avenues for managing your health. Gathering information from reliable sources and discussing your findings with your healthcare team can help you make informed decisions about your care. Dietary Management: Managing celiac disease and multiple food sensitivities can be challenging, but finding a balance that works for you is crucial. Working with a dietitian who specializes in celiac disease and food intolerances can help you develop a personalized dietary plan that meets your nutritional needs while minimizing symptoms. Stress Management: Chronic pain and health issues can take a toll on mental and emotional well-being. Finding healthy coping strategies to manage stress, such as mindfulness, relaxation techniques, or engaging in activities you enjoy, may help improve your overall quality of life. Remember, you're not alone in your journey, and seeking support from healthcare professionals, support groups, or online communities can provide valuable encouragement and guidance.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
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