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Hotel Living Making Me Sick...


redharmony

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redharmony Newbie

Hello everyone. I found your site tonight while googling "numbness and anxiety" along with "wheat"! Thank goodness I found you. I want to cry with relief that I am not crazy and I can control this.

Here's a little background... Italian family...grew up on lots of pasta and bread and with LOTS of behavioral issues and anxiety/anger in family that I now know was directly related to my diet. I *know* this because when I have been off of gluten, my family doesn't recognize me and things are SO pelasant! I am SO pleasant I don't even recognize myself!!

About 4 years ago (I am 40 now), just after the birth of my son, I was sick and gaining weight uncontrollably (I have NEVER been overweight and had NEVER dieted in my life!) and moody, depressed, angry, had insomnia, ear ringing, bloat...all the usual suspects in celiacs. Nonw of this was new, it just seemed to spiral out of control at this point. However, I shop at Wholefoods, all organic, and don't eat any "junk", so I couldn't figure out what was going on. One day I ran across a book called "The Fat Flush" while at WF and thought that maybe I needed to "detox" (something I had also never done). This diet removes all wheat, dairy and sugar from your diet completely for 10 days. It changed my life. EVERYTHING changed. I didn't recognize myself, nor did my family recognize me. First of all I've found that I can **literally** - I am not making this up! - drop 3-4 dress sizes in a matter of 3 days by eliminating wheat. The way I explain it to people is that in the same way some people's eyes swell up if they have an allergy to pollen...my whole body swells up when I have wheat.

My enitre personality changes. The depression, insomnia, anger, brain fog...I always felt like the world was "spinning", bloat, gas, panic and anxiety, everything just disappeared. I had never felt so amazing in my life and I couldn't imagine EVER allowing gluten to ever pass by my lips again. I'm a very disciplined person so when I decide to do or change something, I just do it.

However, I am in BAD shape right now. In January, my husband's company gave us 3 days notice and moved him 1,000 miles away leaving me to take care of our 4 and 7 year old children and to sell our home, pack and move - alone! Since we could never afford to move to the Bay Area (LA was expensive enough) I sold our house myself (so the company couldn't track us on the MLS, find out we were going to quit and fire him! - stress), packed our entire home - alone - shipped everything east, including our children to my parents, drove to pick my husband up, he resigned and we drove across country to start a new life in another state on the east coast where we can actually afford the cost of living. My life has been completely turned upside-down.

I have been living out of hotel rooms and on restaurant food for MONTHS now. I know I have been under a crazy amont of stress but I am 100% CERTAIN most of the HORRIBLE symptoms I am experiencing are FOOD related. I KNOW how incredible I felt when I was off of wheat but I am living in an Extended Stay hotel room while we are in escrow on a home and all I have is a fridge and a hot plate. Cooking real food is impossible (I've tried) so we find ourselves living on canned soup and cereal. We're so busy trying to find a house and jobs and inspectors and register for schools, I don't even have time to do anything but eat on the run. I am amazed at the garbage they serve at restaurants. It's ALL carbs! Potatoes, bread, rice...cheaper I'm sure than fresh vegetables. After I'm finished I'm exhausted but my heart is racing as though I'm having a heart attack. I'm not sure how to explain how absolutely horrific I feel and it is SO frustrating knowing I can make it all stop if only I had a real kitchen and could make real food.

the worst part is the INSOMNIA. When I eat right, I sleep like a baby! I am sleeping about an hour a night right now (no joke!). I am so exhausted but can't sleep during the day either! I am having panic/anxiety and I know it makes sense given our circumstances right now, but I KNOW the severity is completely aggrivated by the wheat.

Everytime I eat my heart races and I have been having "numbness", especially on the left side of my face and body. This is new and I didn't realize could be a symptom of celic's. I feel incredibly weak and tired all the time, even when I have managed to sleep. I am severaly depressed - it just doesn't feel "emotional" AT ALL, but completely "physical". The numbness and panic are wearing me out as well as the insomnia.

My husband is always astounded at the difference in me when I am off of all wheat so I keep asking him to HELP ME by not buying boxes and boxes of cereal and loaves of bread and crakers to fill our little room, but he's not listening!!!!!!!!! Yeah, just don't eat it.... Giess what?? When I am hungry and feeling malnourished (A LOT these days!!!) guess what I grab for???? A bowl or cereal is easy an filling when you're depressed and exhausted and living in one room with a 4 year old for months on end while you're house hunting! Of course I am also angry and emotional and moody so that's not helping any. I keep telling him "IT'S THE FOOD! IF YOU'LL HELP ME EAT RIGHT THINGS WILL BE BETTER FOR YOU TOO!!" But he's not listening.

The symptoms are scaring me to death, especially the numbness, and when it all happens at once and I feel so awful, I think the worst, but I KNOW IT'S MY FOOD!!!!

Thank you all for posting and for listening. It was so comforting tonight to read all of your stories to REMIND MYSELF that I am not going crazy and I will be OK once I am settled again and can cook real food again.

If all goes well in the inspection tomorrow morning, we will be closing escrow on June 4th, so I have 2 more weeks to hold out. I can't tell you how hopeless that makes me feel. Since I have been living like this for MONTHS now, even another day feels like an eternity at this point.

I really just needed to vent and some support and I'd like to try to stay wheat free for the next 2 weeks until we move. I thought if I found a "support" group here to "check in" with, that might help. I feel SO awful I just want to cry. I've seen and felt the difference when off wheat/gluten, so I KNOW it will change my life again.

I am sad and depressed about this move and about being where I am now, but I can't tell if it's actually the place. I TRULY believe that I will feel differently about it here if only I could get off of this poison. That's what it feel like. When I eat gluten, I feel like I've been poisoned. My husband has always said that my skin even turns "gray" when I eat gluten. My skin looks amazing when I don't.

Any ideas for getting through the next few weeks would be greatly appreciated.

Thank you, thank you, thank you for listening.

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missy'smom Collaborator

I really relate to alot of what you've been and are going through. Hang in there and keep coming back here. I had the same experience with the birth of my son. We got two weeks notice to move last year(from the west coast to the east coast) and he moved out first while we spent one more month on our own until school got out. A Dr. mentioned celiac disease to me but I was out of it and had too much going on to follow up(it was an unofficial consultation with my husband's GI). Right after we moved I put two and two together and went gluten-free all the way. Just jumped in and figured it out as I went along because I knew it would take me months to find a Dr. and longer to get an appointment and I was really sick and needed gluten-free just to get through each day. My husband was MIA due to long job hrs. Your experience is alot like mine. In my experience, you will feel very different about your situation and be able to cope better once you get gluten out of your life. I have an appointment this am but will get back with more later. Please post what kinds of food sources you have access to(grocery, convenience etc. restaurants-some have gluten-free menues) and we can suggest food options. One of the members here has a list of mainstream brands/foods that are gluten-free. If she hasn't posted it by the time I get back, I will. We may also be able to get you in touch with a local support group that could help you, some in mine are willing to prepare meals for others.

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CarlaB Enthusiast

Cocoa Pebbles, Fruity Pebbles, Dora the Explorer Cinnamon Stars are mainstream cereals that are gluten-free.

Many soups have gluten. I buy Amy's or Health Valley, which have many gluten-free varieties.

Do you have a freezer and a microwave? How about some gluten-free frozen meals for yourself.

Lara Bars, Bumblebars and Clif Nectar bars are gluten-free.

Keep nuts around for snacking.

Sorry you're feeling so bad, but reaching for foods that make you sick is not helping. You need to stock up on foods you can eat so that you have gluten-free foods to reach for when you're hungry.

The stress isn't helping you either. Hopefully things will settle down for you soon.

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jkmunchkin Rising Star

I am so sorry you are going through all of this, but you definately seem to know how to help yourself, it's just hard to do that right now. As others have mentioned, there are some gluten free mainstream cereals, the Lara Bars (can find at Whole Foods) are great for a quick snack. A lot of the Progresso soups are gluten free. Maybe keep some apples and peanut butter around in the room, which is also good for a quick, filling snack. I think you mentioned you had a small fridge in the room so maybe if you can keep some yogurts, string cheese... stuff that you can just grab and munch on.

You mentioned you are now on the East Coast. Where are you? I'm in NY and also know a lot of places in CT to grab gluten free food if that is any help.

Feel free to PM me if I can be of any help.

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pedro Explorer

Hi and welcome.

I am sorry for what you are going thru, and endouring. No one understands what we go thru unless they experenced the symptoms of the poison (gluten).

I hope you can feel better soon.

Best regards to you.

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alamaz Collaborator

WOW! It sounds like you need a big hug with your gluten-free food! You are really amazing to be keeping it going with all the stress you're under. Is there any way to buy fresh fruits and veggies to snack on? I find that a Lara Bar and piece of fruit are super easy and helps hold you over. If you eat fresh fruit and veggies try dipping them in a nut butter or hummus to add protein and help keep you satisfied. Have you found your local health food store? I just found snack bars by Oskri which are really good. I'm sure actual meals are a lot harder to figure out but there are lots of gluten-free options around. If you do a search for a gluten-free product listing you should be able to find something. I know you're super busy but try to find a half hour a day where you can get out and take a walk or go to the park to have some fun with the kids (or on your own!) That might help take a bit of the stress away for you and the kids even if it's just for a few minutes. I moved around a lot as a kid and never realized how hard it really was for the parents (and also being cooped up in a hotel room as a kid) until I was older and had to move myself so I give you all the props. in the world for what you're doing right now. Keep your head up and good luck with everything!

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kbtoyssni Contributor
Cocoa Pebbles, Fruity Pebbles, Dora the Explorer Cinnamon Stars are mainstream cereals that are gluten-free.

Cocoa Pebbles are no longer gluten-free. They changed the formula maybe four months ago and now it has gluten.

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CarlaB Enthusiast
Cocoa Pebbles are no longer gluten-free. They changed the formula maybe four months ago and now it has gluten.

Are you sure you're not thinking of Cocoa Puffs? They are no longer gluten-free ...

This is from the Post website:

Ingredients: RICE, SUGAR, POLYDEXTROSE (SOURCE OF FIBER), HYDROGENATED VEGETABLE OIL (COCONUT AND PALM KERNEL OILS), COCOA (PROCESSED WITH ALKALI), SALT, CARAMEL COLOR, ARTIFICIAL AND NATURAL FLAVOR, BHA (TO HELP PROTECT FLAVOR). VITAMINS AND MINERALS: NIACINAMIDE, REDUCED IRON, ZINC OXIDE (SOURCE OF ZINC), VITAMIN B6, VITAMIN A PALMITATE, RIBOFLAVIN (VITAMIN B2), THIAMIN MONONITRATE (VITAMIN B1), FOLIC ACID, VITAMIN B12, VITAMIN D.
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Phyllis28 Apprentice

Both WholeFoods and Wild Oats have links to locate the nearest store. Both have lots of gluten free foods.

Open Original Shared Link

Open Original Shared Link

If you have a Costco nearby and you are member the whole cooked chickens are gluten free.

The site below will ship gluten free meals. I have not used them so I am not sure exactly how this works.

Open Original Shared Link

I hope you are able to close escrow soon. Being in cramped temporary housing sounds very stressful. If there are delays in closing escrow you might consider moving to Townplace Suites by Marriott. It is more expensive than an Extended Stay but it is much nicer, at least in my opinion.

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pedro Explorer
Cocoa Pebbles are no longer gluten-free. They changed the formula maybe four months ago and now it has gluten.

Please tell me that Cocoa pebbles is okay, my kids eats them alot and they don't have any reaction.

Many thanks

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redharmony Newbie

Wow! You guys are great! Thank you! I know this will sound "odd", but I think what I really needed was essentially, people to "think" for me. I know it sounds stupid but when I eat wheat and am not sleeping and my heart is racing and I have brain fog, I just can't concentrate. I literally can't THINK for myself! How pathetic is that? I'm very independent, so it's hard for me to not be able to think my way out of this. Things like cheese and yogurt and nuts. I'd forgotten all about nuts! I even forgot to pick those up at the store this week. I become so - almost - "confused", I stand in the store not being able to "remember" what I need...like cut up veggies with peanut butter and nuts, etc... If I leave it up to my husband, he just buys bread, cereal and crackers. GREAT to know about the cereals that are gluten free! Even the non-organic choices!

Also, thank you for the idea about Amy's soups! This is what I'm talking about...how did I not think of this myself? Those "bars" many of you mentioned were totally unfamiliar to me but I will look into them. I need a lot more vegetables but anything that will get me through for the next few weeks is great, even if they aren't well balanced meals for now!

I have a problem with dairy products and sugar too, but I know the gluten is the worst. I had eggs and spinich this morning, then a salad for lunch, but the chicken in the salad had some kind of "breading". My heart is racing again and I just feel "funny". Does this sound familiar to everyone? The left side of me feels "uncoordinated". I'ts not *actually* uncoordinated, it just feels "weak". Does this make sense to anyone else?

The inspection of the house went perfectly today and I didn't want to leave the house. I just can't wait to be "home" again soon, and it looks like that's right around the corner now.

There is a Wholefoods here but I am SO SPACEY, I can't drive!!!!! I LOVE TO DRIVE. I am VERY independent this way so it's making me nuts to have to tell my husband - you have to drive, I can't. I am so tired I haven't had the energy to even get myself to the store!!!! It's such a hole to dig myself out of, I almost can't. If I can just get myself through the first few days...I'll be able to think clearly again and I'll be ok.

Thank you - everyone - for all of your wonderful suggestions and support!!! I'll be back and looking forward to sharing suggestions!

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Ridgewalker Contributor
Wow! You guys are great! Thank you! I know this will sound "odd", but I think what I really needed was essentially, people to "think" for me. I know it sounds stupid but when I eat wheat and am not sleeping and my heart is racing and I have brain fog, I just can't concentrate. I literally can't THINK for myself! How pathetic is that? I'm very independent, so it's hard for me to not be able to think my way out of this. Things like cheese and yogurt and nuts. I'd forgotten all about nuts! I even forgot to pick those up at the store this week. I become so - almost - "confused", I stand in the store not being able to "remember" what I need...like cut up veggies with peanut butter and nuts, etc... If I leave it up to my husband, he just buys bread, cereal and crackers. GREAT to know about the cereals that are gluten free! Even the non-organic choices!

Also, thank you for the idea about Amy's soups! This is what I'm talking about...how did I not think of this myself? Those "bars" many of you mentioned were totally unfamiliar to me but I will look into them. I need a lot more vegetables but anything that will get me through for the next few weeks is great, even if they aren't well balanced meals for now!

I have a problem with dairy products and sugar too, but I know the gluten is the worst. I had eggs and spinich this morning, then a salad for lunch, but the chicken in the salad had some kind of "breading". My heart is racing again and I just feel "funny". Does this sound familiar to everyone? The left side of me feels "uncoordinated". I'ts not *actually* uncoordinated, it just feels "weak". Does this make sense to anyone else?

The inspection of the house went perfectly today and I didn't want to leave the house. I just can't wait to be "home" again soon, and it looks like that's right around the corner now.

There is a Wholefoods here but I am SO SPACEY, I can't drive!!!!! I LOVE TO DRIVE. I am VERY independent this way so it's making me nuts to have to tell my husband - you have to drive, I can't. I am so tired I haven't had the energy to even get myself to the store!!!! It's such a hole to dig myself out of, I almost can't. If I can just get myself through the first few days...I'll be able to think clearly again and I'll be ok.

Thank you - everyone - for all of your wonderful suggestions and support!!! I'll be back and looking forward to sharing suggestions!

The brain fog you mentioned is a symptom my mother gets when she is glutened. She was diagnosed Celiac last December. There are other symptoms she has too, but yeah, she can't think clearly, memory doesn't work right, she drops things and runs into things. She hates it, finds it extremely frustrating.

I feel so badly for you, having to deal with all of this, pretty much on your own. Keep coming back here every day. I've found lots of lists of convenient, portable gluten-free foods in the Babies and Kids section of the forums. Hang in there.

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aikiducky Apprentice

Yes brain fog is actually a very common symptom! So are various neurological symptoms like the weakness you describe. You absolutely need to be gluten free, and your husband needs to take this more seriously! I wonder if it would help if you let him read this thread? If you want we'll set him straight! :)

I realize he's probably very stressed at the moment as well, but really if he's doing groceries anyway it's not too much to ask to buy foods that you can eat also! And for yourself you need to realize that it's actually better to go hungry than to keep eating gluten. And if you do keep giving in you can't really blame him for not taking it seriously either.

Sorry for lecturing you, I know this is just a temporary situation you're in, but once you're settled you eventually have to get hubby on board as well. It's really hard to stay gluten free if you don't have support from your nearest family. And from what you describe, it's not silly at all but you actually have very typical symptoms.

Pauliina

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Nancym Enthusiast

What sort of extended stay hotel only has a hot plate and a fridge? Usually everyone I've been to has a fridge, microwave, and quite often a range/oven. Could you find a different place to stay? Maybe get on the internet and search for a better hotel, it'll probably list ammenities.

I think though, even with a hot plate and fridge you could do it. Get to a Whole Foods and get your gluten-free foods. Get gluten-free soups, bags of salad greens or prepared salads without the bad stuff. If you've got a Trader Joe's check them out, they've usually got loads of stuff that is prepared, or mostly prepared.

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redharmony Newbie
What sort of extended stay hotel only has a hot plate and a fridge? Usually everyone I've been to has a fridge, microwave, and quite often a range/oven. Could you find a different place to stay? Maybe get on the internet and search for a better hotel, it'll probably list ammenities.

I think though, even with a hot plate and fridge you could do it. Get to a Whole Foods and get your gluten-free foods. Get gluten-free soups, bags of salad greens or prepared salads without the bad stuff. If you've got a Trader Joe's check them out, they've usually got loads of stuff that is prepared, or mostly prepared.

I meant to respond to the idea of finding another hotel but - brain fog! - forgot! Ha! We have a dog with us and this is the only place we could find that takes dogs. This has been a long term situation for us and a regular higher end hotel would have been far too expensive long term, but mainly it is a canine issue.

There is another Extended Stay with ovens but the people there seemed to be *very* pernmanent tenants and there were big complaints about roaches, mice, etc... ugh. So we are staying at the other one and it has only a tiny stove top with two small burners, the equivelent of a hot plate.

But my main issue - which sounds so stupid - is that I couldn't even **think** clearly enough to think of, say, Amy's canned soups or peanuts! When I'm gluten free and thinking clearly, I am actually very creative with making food. But when I'm on it, I just stand in the middle of the store looking stupid, extremely tired and feeling spacey.

I have to give my husband credit due...he really is VERY supportive, does everything he can and does take me seriously, BUT, you're right, he's tired too, and he doesn't seem to understand what to do to be "helpful". When I become this "non-functioning", I need for him to *know* what kinds of foods to buy for me and he doesn't ever seem to get it so he comes back with all these foods he likes and when I'm starving....

I should come up with an official "list" for him ahead of time when I am gluten free and thinking clearly, otherwise, when he asks me what to buy, I don't have any answers for him. I think our kids have this too though, and that's another story for another day. He refuses to believe it and if he's feeding them and they want cereal or a bagel or toast or pasta (and guess what kids love to eat???), he'll give them everything! He acts like I'm "starving" them by not giving them a loaf of bread! He used to work from home so it was very difficult to control, but he's probably going to be working at an office now and I will be solely in chanrge of food from now on, so we'll see if it helps the kids and then compare - before and after. I will definitely be back for kid ideas!

You're right...I am better off not eating rather than eat gluten, but I get so hungry!!! It's ok for a few days, but it's been months.

Thanks again for all of the great feedback!

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aikiducky Apprentice

Well, let's hope that you only need to be hungry for a few days, and then you'll have a clearer head and can come up with a grocery list of things you can eat! Just don't touch the gluteny stuff now! :)

Pauliina

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Phyllis28 Apprentice

You might try to contact the local support group. Someone maybe available to take you to WholeFoods. Below is the link to the contacts for Celiac Disease Foundation

Open Original Shared Link

Not all areas have a group associated with the Celiac Disease Foundation. When I am trying to locate contacts in a new city I do an internet search.

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dionnek Enthusiast

Cocoa Pebbles are still gluten free, at least in my area (Southeast USA). They have not changed.

Whole Foods also has gluten free sausages in all kinds of different flavors, and turkey bacon (regular too if you like that) that you could fry up on a hot plate very easily. Make sure you read the ingredients in the sausages though b/c some flavors are not gluten free (saw breadcrumbs listed in the ingredients of one I was about to buy this weekend).

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JNBunnie1 Community Regular

Hi Redharmony! I have an idea for you, write it down right now! Thai Kitchen makes instant meals just like Ramen noodles, only it's rice noodles. Next time you're in the grocery store, they're usually in the health food section of Stop& Shop, which is an east coast grocery, buy ten! And reach for those instead of the gluteny stuff next time you're starving. Any chance you've wound up in CT? That's where I live, I could give you lots of ideas about where to shop and eat.

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redharmony Newbie

Hi everyone! I hadn't notcied this had spilled onto a 2nd page so I didn't see additional responses until just now!

I have avoided gluten for about 3 days now and I feel SO much better already!!!! it's almost instantaneous for me. I feel great after every meal...unless I eat gluten, then I feel awful.

Thank you for the suggestion about the Thai noodles!!! There really are a lot of alternatives I can grab for when I want that nice carb hangover without the immune system allergic response.

Normally, I also avoid dairy (which makes my stomach feel crummy) and sugar, so, "eating right" seemed really overwhelming to me right now. I am looking at this from a new vantage point now...at least for a few more weeks until we are settled!...I am eating a lot of things I wouldn't normally eat, which is making up for the lack of fresh veggies I'd usually have or pastas, breads, etc..I've been eating to fill me up...Things like cheese and yogurt. I even had ice cream last night!! Because, YES, I AM mildly depressed about all of this, and I AM eating for comfort right now and an apple or raw spinich is not cutting it for me!!!!

But, so far, no heart racing and no dizzy-weird feelings. Hmmm...think it's the gluten???

I had always avoided the obvious, like pasta and bread, but you're right - my God, they put gluten in everything. SAUSAGE??? I am checking every label now!

I am actually in Raleigh, North Carolina and there seem to be a lot of alternative places for me to shop here. Now that my mind is a little clearer and I have a little more energy back, I've searched out and found some great small heath food stores.

At this point I know I can't eat all the fresh veggies and protein, etc... that I usually do, so I am giving myself permission to load up on anything and everything that will fill me up as long as I avoid the gluten.

The inspection on our house went exceptionally well and we are due to close escrow and move in the first week of June. So excited.

Why is it so hard to keep **believing** this is a problem?? I find myself sometimes falling into the thinking "It's just **one** bowl of pasta"... I remember... until I'm starving and I'm sitting in a Crackerbarrel and those damn biscuits look so good!

I am certain my daughter has celiac's and I can't wait to put her on this diet. She is going to feel so much better!!

Thanks again! I will keep posting and dying to try those noodles!

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dionnek Enthusiast

The Thai Kitchen noodle things (they make soup bowls and "meals" in rectanle boxes are great! Just make sure you check the ingredients - the ones that are gluten free will say so in red under the ingredient lst. NOt all are gluten-free.

Also, Chick-fil-A, Wendy's, Outback, PF Changs, Smokey Bones (if you have that there), and Chilis are a few chain restaurants that I know of htat have gluten free menus (all are online). I think Olive Garden and Carrabas do to, although I've never tried those.

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aikiducky Apprentice

I'm so glad you feel better! Glad to hear you get to move into your house soon, too! :)

You'll eventually get used to the idea that it's really true. You can always come here and read a few horror stories if you need reminding! :P The longer you stay strictly gluten free, the better you start to feel, the easier it gets. And you also get a better idea of just how many little nagging health problems were caused by it.

Pauliina

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redharmony Newbie

Right now, it's those "nagging health problems" I am hoping to be relieved of, mostly the **worry** and anxiety caused from wondering what the heck is going on with my body and making me feel so sick. You know, when you sit there and wonder if you're dying. Is it chronic fatigue? a pinched nerve? hormone fluctuations? brain tumor? It will be a relief when I feel better and can stop worrying. It's stupid because I do remember how good I felt the last time I was completely gluten free.

Stayed away from gluten again, despite husband cooking some Trader Joe's stir fry thing that smelled SO good and son had pasta. I fried a steak and some veggies and, surprise! I feel "normal"! No headache, no racing heart, and probably a good night's sleep tonight again.

Though I still have muscle weakness. Hope that's related too. We'll see.

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JNBunnie1 Community Regular

Way to go!! Trader Joe's is a great place to shop. You're probably still not absorbing all you rnutrients, because your guts still healing. You might want to find a decent probiotic at your health food joint and start taking that. Make sure it's gluten free!!

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jerseyangel Proficient

Hi and welcome! :D

You've already gotten lots of great advice already. I'm so glad the inspection went well, and you'll be in your own house soon.

To speak to the symptoms--I"ve been diagnosed with anxiety and get palpations when glutened. The numbness on the left side--I get that, too along with the brain fog. Interesting--your symptoms really mirror the ones I get.

At one point, the numbness got so bad that I called my doctor on a Friday night. I was afraid I might be having a stroke. Of course, I wasn't and she was nice enough to talk to me until I was calmer.

I can also relate to having to move with two little ones alone--with the husband going on ahead. It's happened to me several times--once, the kids and I had to live in the old house 10 months until it sold while my husband was living in another state.

If you can get through this--you can get through anything :D Seriously, there is light at the end of the tunnel!

If there's anything I can do, don't hesitate to ask! :)

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    • Suzi374
      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
    • Smith-Ronald
      Enlarged lymph nodes in neck and groin with celiac are not uncommon. They can take time to reduce even after going gluten-free. Monitoring is key.
    • Bayb
      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 
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