sfamor

I actually just put a post up about my wonderful trip to Kauai. It was so gluten-free friendly I still can not quite believe it! We stayed at the Cliffs Resort timeshare in Princeville through RCI and would definitely recommend it.

Hi everyone- I just got back from the island of Kauai in, HI and wanted to share what a wonderful, gluten-free friendly place we found it to be. Most of our time was spent on the east and north-sides of the island which are much less touristy than the south of the island (where all the big resorts are), but so much to do and so much to eat! Nearly every restaurant we went to had a gluten free menu and we found gluten-free baked goods at multiple coffee shops that we randomly wandered into. We also found two different cute little natural foods stores where we stalked up on gluten-free items for the days we dined-in at our timeshare. We did two organized tours-- a snorkeling trip and a kayak/hike to a waterfall and both included gluten free sandwiches for lunch as an option. Kauai in general is gorgeous- lots of non-touristy and relatively crowd-free beaches, good hiking, snorkeling, etc.. I still can not get over what a wonderful surprise it was to find so many gluten-free options available everywhere. Yay, vacation success!!

Were you tested for gastroparesis? I have it. It makes me feel full and it sometimes makes me throw up. The food that I throw up is mostly undigested. If you have that, you need to find a new gastroenterologist.

Perhaps you need to stick to easy to digest foods for awhile? Things like white rice, chicken breast and applesauce. You might also do well with a liquid diet. I can't really do that because of diabetes. But juices and broths go down easily.

I really thought that it might be gasroparesis too (as much of the food I throw up is undigested or only partially digested), but when I did a gastric emptying study they actually found that the food moved through my stomach too quickly instead of too slowly. And, of course, they could give me no explanation for that and just told me it wasn't an issue (thanks but throwing up daily is kind of an issue for me!). The thing that interests me now in light of getting the results about the strong sensitivity to eggs, is that they have you eat eggs (with something radioactive on them) to do the gastric emptying test. Maybe that impacted it somehow?? I think I will follow your advice though and try another gastroenterologist to get a second opinion.

UGH...

If you are Celiac, and diagnosed A.D.D. and you are on Wellrutrin? You sir need to check out a meeting group, it's called AA. The alcohol and your medication don't mix, you are mixing a deadly cocktail. I hope you find peace and the help you need.

This is really not a helpful comment. He's looking for support around going gluten free; he was not asking for your unsolicited medical advice about a separate issue. If you truly felt concern that this poster might be struggling with an alcohol problem or simply might not be aware that alcohol can react negatively with wellbutrin, then a quick educational fyi would have sufficed or even better, a private message offering kind words of support and recommendations for resources would likely better have served the purpose.

Like warrior princess said, I am still a dabbler. I guess I am partly in denial, or maybe its the A.D.D. (I have been tested for and was diagnosed with it-I take wellbutrin for it). Its under control but not gone.

I do post on different boards too, but I like to get different opinions.

I hope you guys will agree with me though that it tough to finally make a full mental commitment to going gluten free. And its a tough diet to follow-gluten is everywhere.

My brain fart last night eating the KFC was influenced by a couple beers, celebrating my son's engagement, and thinking its just chicken and maybe the meat will cancel out the gluten or the frying will render it harmless. Something like that.

Today of course I am sneezing, listless, and my bloating is back.

Anyhoo, thanks for keeping an eye on me. KIck me in the arse when I need it-I am a former minor hockey coach I have dished out a lot of verbal kicks myself!

This site is awesome, God Bless you all.

I felt very compelled to respond to this after reading through many of the responses you got. To take a softer approach-- going gluten free is going to be easier for some people and harder for others. It's going to depend on your symptoms, how long you've lived with them, how debilitating they are, how supportive your family is, the area you live in and the good resources you have, and so so many other factors. It is simply not black and white as many people who responded seemed to view it as. It is perfectly normal (AND EXCPECTED!) that you are going to have some ambivalence about making such a huge and drastic life altering change as going gluten free is for most people. I can say for myself I went through a long period of what I can only describe as mourning. I can tell you that it does get easier! I can say that for myself, making the decision to go 100% gluten free and telling people around me that I was doing it was what got me there. If you haven't decided yourself that you are 100% committed than it's going to be a whole lot easier to have that beer or fried chicken wing, or whatever it is. Before it really "clicked" for me that this was going to have to be 100% of the time, I would go gluten free for a couple days and then cheat with someone small and then since I had already cheated with the small thing I'd figure it didn't matter any more if I just ate something else with gluten, etc... Part of what helped me too is always planning and having a backup plan for food like literally keeping Redbridge gluten free beer in my trunk so I don't have to remember to pack it if I'm going out to a last minute social event. Also, there's kind of a psychological shift that has to happen to I think. For some people, it happens right away. They've felt so bad for so long that they can go gluten free the second the get the diagnosis (or even before they get it) because they are so ready to do whatever it takes to make themselves feel better. For me, this happened somewhat, but I also slowly, over time came to realize that it is just not the end of the world if I can not have certain foods ever again. It seemed like the end of the world at first, but I can say that two years later, if I'm out at a restaurant with friends and there's nothing on the menu I can order for desert while my friends all are eating giant pieces of chocolate cake, I can get through it with only mild self-pity . Seriously though, my cravings have subsided and after two years, all of the gluten free substitutes for stuff really does taste pretty good. Spend some time (and get your family on board) to find out what's available at the different grocery stores in your area and online.

p.s. Did want to mention that the sneezing symptom isn't one I've often heard about with celiacs or gluten sensitivity. I'm not at all an expert, but just a thought was that maybe you're reacting to something else in your environment/food in addition to the gluten? A lot of people on here, myself included have multiple food allergies and it can be hard to distinguish the symptoms.

Hello- I'm going to give a good amount of background info to my situation so thank you in advance for bearing with me for a long post!

I was diagnosed celiac (biopsy & blood test) exactly two years ago and have been gluten free ever since. Some symptoms like brain fog, severe acid reflux, and extended stomach/bloating went away within several months, but I continued to feel sick all the time- tired, backaches, stomach cramps and pain, bad gas, etc. About a year and a half ago I started having terrible nausea after eating and began actually throw up, particularly after dinner. Prior to this happening I feel extremely full as if food isn't moving through my stomach (even if I've only had a small meal) and it is extremely uncomfortable/painful. The vomiting, although unpleasant, relieves the uncomfortable fullness. My gastroenterologist told me that I have "cyclical vomiting" and that "some people just throw up often and we don't know why." To me, this answer was totally frustrating and unacceptable and I ended up trying to seek some answers on my own.

I have long suspected other food allergies/sensitivities and I had actually had skin prick testing done about a year ago at a regular allergist paid for by my insurance. It didn't show any positives except for what I presume to be a false positive to squash (I rarely eat it, but when I do I've never had had any issues). I took the lack of positive results at face value and put the allergy idea to rest. However, I have been working with a local naturopath for about two months now and she had me tested for allergies and sensitivities through a company called USBiotek. I still don't totally understand how the test works (it is a blood test using the ELISA measure) and maybe someone on here can help me understand, but it says that it tests for three antibody types- IgA, IgE, and IgG. My understanding is that an IgE reaction is what is usually considered a "true" allergic response in which you'd see symptoms immediately or within a couple hours after consuming and IgA and IgG are "sensitivities" with symptoms showing up within 72 hours. Please correct me if I have this wrong because I still am not sure I totally understand.

To the point...so my panel came back showing IgE reactions that fell in the "mid moderate to high" range to cows milk, including whey (but not casein or oddly mozzarella cheese and yogurt), beef, and lamb. I also had IgG and IgE responses in the high to extremely high range for Casein, mozzarella cheese, goats milk, yogurt, and egg. In fact the IgG reaction to egg was as high as the test gets. A lot of this makes sense to me. Milk and eggs were two foods that I had a feeling might be making me sick (and unfortunately for me foods that I consume a lot!). My ultimate question is what does it mean that this ELISA test showed that I had true IgE allergies to milk and beef whereas the skin prick test (that seems to be the standard among mainstream western allergists) showed no reactions and I had been deemed free of food allergens? I'd be really grateful some assistance in making sense of all this! I know that my allergist's office does do blood tests, in addition to the skin prick tests- should I make another appointment and see if they'll do their own blood test for the dairy and beef to see if I can duplicate the results??

Out of curiosity, where are you located? Maybe someone on here from that area can give you some tips. Even though it might not seem like anything good (and affordable) is available in your area, someone who's been doing this longer might have some suggestions. For example here in California you can use food stamps at farmers markets. Also, a treat out here that I LOVE to splurge on (actually not much of a splurge, it's very very cheap) is going to In-and-Out for a burger and fries. I just order the burger "protein style" and it comes without a bun. Plus their fries are fine to eat because they don't fry anything else up in the fryers that might have wheat.

The quinoa pasta is really good and tastes the most like regular pasta. It doesn't get mushy like corn or rice pasta does.

You could try making smoothies for yourself in the blender with frozen fruit and plain yogurt as a cheap, easy treat or even breakfast.

It will be a challenge to get used to the idea of changing your diet so radically, but it will be even more of a challenge to keep dealing with the health problems that are caused by NOT going gluten free! Many of us have been on food stamps at one time or another and it IS possible to eat gluten free! Go to your public library and see if you can get a simple gluten free cookbook. Start small- don't try the most complicated recipe first. You have the right attitude about this and I know that you'll be fine!

It depends a little I think on what form of nuts your eating. Are you getting ones that are saturated with salt and have been very processed (and possibly coated in all kinds of fun stuff like MSG or even wheat) or are you getting raw ones that are in a natural state? Regularly eating a serving of raw almonds is supposed to actually have a ton of health benefits from getting rid of a headache, improving cholesterol, to giving you energy (tons of good energizing vitamins and minerals in the skins).

My primary care doctor prescribed B-12 shots weekly and then monthly for a b-12 deficiency when I was first diagnosed with both celiacs and low B-12. I also had low iron and was able to get my number back up to normal by taking a vitamin tablet daily for a couple months. Until your gut is "healed" though taking vitamins in a pill form won't be useful because you won't be able to absorb them. The sublingual tablets should work though because you absorb them through the lining of the skin under your tongue. I work with a Naturopathic doctor now and she has suggested a quality liquid vitamin as it is easier to digest and absorb, but again that's only for after you've healed your gut (some say it can take 6 months to a year after going gluten free).

A gastroenterologist should be able to help and will be covered by Medicaid. She may need a referral from her primary care doctor first, but shouldn't be hard to get with the symptoms she's having.

I have to remind myself all the time that it is normal to sometimes have gas, diarrhea, bloating, fatigue, stomach pain, brain fog, etc.. My non-celiac partner experiences several of these symptoms a week. Because these symptoms brought me so much difficulty and impacted my life so profoundly before my diagnosis I spent a long time being hyper aware of my bodily functions and feelings and attributing anything that seemed off to having accidentally consumed gluten. The funny thing is that the few times where I've realized after the fact that I really did consume something that for sure had gluten in it, I didn't notice any particular reaction. Yet when I'm laid up with the stomach flu, I'm convinced I've been "glutened" even though I've been cooking only with known gluten free foods in my gluten free kitchen. I know that many people do suffer from severe reactions to accidental gluten consumption, but for myself it has been very enlightening to realize that most of what I have attributed to glutening, is just normal (and probably a reflection of tending to overeat at times, not eating the most healthy diet, eating fast, stress, getting to bed late, etc.).

I went to Thailand earlier this year and had a great time. I had expected English to be spoken more widely there based on a guide book I read, but actually most Thai people do not speak English or speak it at a non-fluent level. As such, it was not really wasn't possible to find out for sure what I was getting in my food a lot of the time. I did have a card written in Thai that supposedly explained being gluten free, but I didn't even end up using it a lot of places because it just seemed like too much of a hassle. To the best of my knowledge all of the curries are gluten free and I ate a LOT of curry!! Unfortunately most non-curry dishes do have soy sauce and while I have heard that soy sauce in Thailand may not to be fermented with wheat as it is most elsewhere, I had no way to prove that since the labels are of course in Thai!

Not sure where you'll be in Thailand, but the highlight of my trip was staying in Chiang Dao which is a very small village about an hour and a half bus ride from Chiang Mai, the 2nd largest city. We stayed here at "nest 2": Open Original Shared Link I showed my Thai gluten free card to the owner, who is also the head chef at the small on-site restaurant and she ended up making me a four course meal that included different types of regional cuisine. It was the best food of my entire trip and I feel so grateful! Check it out if you can!

I'm from SF too, well actually just moved to Oakland, but SFer in my heart! I just heard about a new restaurant opening on 19th and Lexington in the Mission that's gonna have lots of gluten-free options (the menu is supposed to be "seasonal soul food". Can't wait for it to open! Also just found out the American Grilled Cheese Kitchen in SOMA/South Beach has gluten-free bread and are aware of CC issues. I assume you probably know about Zadin in the Castro and Pica Pica in the Mission? Yum. Although this doesn't help for your lunches- if you're ever in Berkeley Rick and Anne's has the most amazing gluten free pancakes for breakfast and has gluten free rolls for hamburgers (I ask them to wash the grill & spatula prior to cooking as everything is cooked together and they always are happy to do it).

I use Nature Made brand. They carry it at most chain drug stores. It specifically states on the bottle that it's gluten free. My doctor told me to it with Vitamin C (such as a glass of orange juice) because it apparently increases the absorption. My doctor also recommended taking Miralax daily (a mild laxative) to help with constipation. I actually stopped the Miralax for a week because I didn't think it was necessary, but then quickly realized it was!!

I really like Rainbow Light products. I get them from Whole Foods, but they can be ordered online or at other natural food stores. I have read that their prenatal vitamins are NOT gluten free. Their women's formula is. This is what they say on their website:

Allergens: What Rainbow Light products are soy free? gluten-free? wheat free? dairy free?

Rainbow Light

I hate to post something so negative, but I am just in a terrible mood today. I am coming up on a year mark from being diagnosed with Celiac's and going gluten free. I have been EXTREMELY careful with the diet and doubt that I am getting gluten from any hidden sources. I just had my bloodwork redone and my IgG and IgG numbers are back within normal ranges which is promising, BUT I don't feel any better and in some ways actually feel worse. I am still just as exhausted as I used to be, but then no matter how tired I am, I have trouble sleeping and never wake up feeling rested. My brain fog is still ever present and I seem to have some neuro symptoms (unsteadiness at times, little muscle jerks). I used to have awful GERD and it got better for a little while after going gluten free, but now it's nearly as bad as it used to be. I also developed an awful new symptom after going gluten free which is that I started feeling nousceas and vomiting in the evenings a couple times a week. It feels like food is not moving through my stomach to the point of where it gets "backed up", but I actually had a stomach emptying test a few weeks ago that show the opposite- food is moving through my stomach too QUICKLY (doctor couldn't explain why this was happening and isn't worried).

I do have a b-12 and iron deficiency for which I've been getting b-12 shots and taking iron supplements so my numbers should be going up. I've been tested for diabetes and sleep apnea and thyroid issues with all negative results. Endoscopy was normal other than the Celiac's. I've also recently was tested for over 200 common allergy's (skin prick test) at the doctors and all negative. Am I missing something? Why do I still feel SO bad??

I'm not sure about a specific trigger although around the time I started having symptoms I did have a particularly stressful job working at a group home for children with severe emotional disturbances. All at once, and totally out of the blue, I developed severe acid reflux, Rosacea, and started having panic attacks, none of which seemed to improve even with medication. I had always been very healthy both physically and mentally and I could not figure out what was happening to me. All of my symptoms were treated individually before finally 7 years later my celiac's was discovered by accident during an endoscopy to figure out why I was having such severe acid reflux (nobody had suspected celiac's and even after the diagnosis the doctor told me the acid reflux was unrelated. Actually it was gone within 3 months!) It drives me crazy to think I suffered for all those years with nobody putting two and two together, but I know some people go much longer without a diagnosis

I'm 27 and I recently had a stomach motility study to see how fast food was moving through my stomach. I had *thought* food was moving too slowly through my stomach because I often feel bloated and unusually full after eating, which progressed to actual uncontrolled vomiting after eating. It felt like the food just wasn't going anywhere and I was throwing up as a result. I was surprised to learn that the opposite was happening (this is apparently called rapid stomach emptying or "gastric dumping.") Although it's usually associated with diarrhea (as well as some other symptoms), that's actually not a problem I have. Anyways, I've been referred to a gastroenterologist (just switched insurances), but I haven't heard back from them yet and I'm starting to panic about why I have this. It sounds like it's almost always associated with having had gastric bypass surgery, but I never have. It also appears to be associated once in a while with diabetes (I've never been tested) and a horrible, but rare disease called Zolinger-Ellison disease. I don't think it's related to my celiac's, but because I'm overly anxious about what could be going on and why, I thought I'd ask on here if anyone else has had this problem and what it was caused by/what you were able to do about it. Thanks!!

Another link that was helpful for me! Open Original Shared Link

Hi guys, I am a recentlyish diagnosed celiac (4-5 months now I think) that has been gluten free since then.

I am going to go on holiday to Thailand, and probably Cambodia and Vietnam over Christmas. I am not the sort of chap to stay in a nice hotel, I prefer a guesthouse and eating from street vendors (not as bad nor as dangerous as you'd think). However clearly I am going to struggle to find gluten free food and will inevitabley end up getting glutened probably during the whole trip. It's not a prospect that fills me with glee but I refuse to not travel to certain places because of food concerns.

I was wondering what you guys do when you get glutened and how you'd prepare knowing it will likely happen. So far for me I tend to get bad D for a day or two but that may have only been cross contamination, I don't think i've slipped up and eaten anything with a significant amount of gluten in yet.

What would you suggest I bring with me (I pack very light) in the likely event i'll end up glutened?

Thanks everyone

Mark

I'm going to Thailand in January and specifically picked it because of how EASY it seems like it will be to find foods to eat there. In the research I've done it seems the majority of Thai food is gluten free. Just gotta be careful of some of the sauces. It sounds like in the north they are more likely to use soy sauce because of the Chinese influence. I'm gonna bring an allergy card in Thai like this one: Open Original Shared Link They make them in many languages so I'm sure you can find an equivalent for Vietnam and Cambodia. When I was doing research I found this thread from a couple years back: Hope you have an awesome time!!!

Thanks for all the good advise everyone! One thing I did learn this past week is that I'm actually deficient in vitamin B-12 and I'll have to start getting b-12 injections and continuing up to a year since I'm clearly not absorbing it well enough due to celiacs. I've been doing a lot of research this weekend and it looks like this deficiency could be one of the causes of why my energy is still so low. I am excited to see if it will increase my energy.

Hi everyone- this is my first time at the message boards and first time posting in general so my apologies if this topic as already been thoroughly discussed. I'm 27 and was diagnosed with Celiacs through intestinal biopsy just at the end of May this year and went gluten free immediately. I'm still having a lot of symptoms unfortunately though. I am super lucky to have a partner who is thrilled to support my gluten free diet. We live together and she eats 100% gluten free while at home and has never once complained. She also advocates for me when we go to restaurants and will talk to the servers about my strict need for gluten free (I'm pretty shy so I'm still getting used to speaking up about this!).

So...the issue I'm having is that while she is so supportive, I also feel like she is slowly having less and less tolerance for my symptoms. I am often tired, anxious, and have really bad GERD. I think she thought that getting the diagnosis and being gluten free would solve these symptoms. However, 6 months later and I still have them. I know it's possible that I have other issues besides Celiac's such as food allergies and am looking into that, but my main concern at the moment is that I hate that my symptoms are causing strain in my relationship. My girlfriend is generally patient and tolerant, but I can see when she's trying to hide her disappointment when I feel too tired or not feeling well enough to do some activity that she has planned. I also don't feel like she understands when I try to explain the severity of my symptoms and how it effects me. Although it is getting better, being productive at work has always been a challenge because I'm usually so tired I can barely keep my eyes open and have awful "brain fog." When I try to explain this to my partner her response is usually something like that she was tired too at work too that day. While I don't want to invalidate her experience of being tired, I also feel frustrated with her not knowing or understanding how hard this really is. And it's not that she is unfamiliar with Celiacs, she's learned a lot about it since my diagnosis, it's just she's not experiencing it herself.

I guess my questions are: 1. How do your symptoms effect your relationships and what helps you and your partner cope? and 2. What do you do about your partner not understanding your symptoms and how they are severely impacting you?