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New And Already Emotionally Exhausted


Adalaide

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Adalaide Mentor

It seems like my entire marriage has been a roller coaster ride and I've been lucky to have such an amazing man at my side. A week before our first anniversary I started having random weird health issues. Two years later I was diagnosed with fibromyalgia. Honestly I was thrilled that someone could put a name to how awful I felt and I could start down the road to getting better. Sadly, while some things improved, others simply continued to get worse. After several more months I found myself in the ER in the middle of the night in the worst pain I've ever been in. This was in September of last year, that night I was diagnosed with gallstones, sent home drugged senseless and told to see a surgeon.

As I'm sure many know, seeing a surgeon isn't exactly easy depending on your insurance. After three months I found myself in the ER three times during the week before Christmas. I had emergency surgery two days before Christmas to have my gallbladder removed and an ERCP the following morning to remove a stone stuck in a duct. (Whoever decided an ERCP must be done with a patient on their stomach even if it has been less than a day since they had their stomach cut open is a sadist.) I wasn't told that the gastroenterologist did a biopsy until I got a phone call a week later. They said it "suggests" that I have celiac. I went to see my regular doctor since seeing a specialist is apparently slightly more difficult than becoming a rocket scientist.

I ended up seeing his PA who said she'd do blood tests and to just go home and start a gluten free diet. No useful info. I couldn't have been more unhappy with the fact that I wasted a copay to have her tell me what I could read online for free. My blood work is all negative, which I know doesn't mean a thing. It is my understanding that a biopsy is the definitive way to diagnose celiac so I suppose I can be pretty confident at this point that I do in fact have it. My appointment was two days before my birthday so I ate a lot of things I shouldn't have and started my new diet/lifestyle a few days ago.

I was fine the first two days, and feeling pretty positive about the whole thing. Sadly though, my husband and I rent half of his parent's home and share a kitchen so things will be extremely awkward for me. I've purchased a whole bunch of stuff that I have to keep all by itself in the kitchen. I have to deal with things like the fact that my mother in law brought KFC home last night. I'm sure with time it'll get easier but when I smelled then saw it I simply fled and cried like a baby. I grew up in my grammy's kitching learning to bake which has been my favorite hobby my whole life. I even got a new cookbook for Christmas that has all the recipes I grew up making.

I'm trying to stay positive but it's so difficult when I walk into the kitchen and see cinnamon rolls on the counter or the tiny space that is mine in the pantry full of so many of what were my favorite foods. Sharing a kitchen with my in-laws is only going to make everything ten times harder than it has to be. Right now the emotional toll is more than I imagined it could be. I mean, it's just food right? It's so dumb that I'm crying over KFC and toast and cake. I'm not sure how to pull myself out of this downward spiral and just deal with it. I feel so alone and isolated. My husband is supportive but he doesn't have to give up his favorite foods. Any advice or words of encouragement would be super helpful right now.


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Skylark Collaborator

My advice? Cry all you need to get it out of your system. This is an enormous lifestyle change and grief is totally, completely normal. It's like any shock, you're fine for a time and then the enormity of it comes crashing down.

It's always a little harder because often your friends and family won't completely "get it". A lot of people see gluten-free like they would view a weight loss diet; they forget that we risk serious health consequences if we cheat even a little. Don't worry about it - they will probably come to understand.

The big thing that will help is finding gluten-free versions of your favorite foods as quickly as possible so you don't feel deprived. KFC getting to you? Make your own fried chicken breaded in crushed Rice Chex. Pizza for dinner? Make sure you have a Glutino pizza ready to doctor with your favorite toppings and toss in the oven. Miss brownies? Get a Pamela's mix and watch everyone else come running for your treat! B) You have to be proactive on this diet, and make sure you always have something fabulous to eat. Udi's makes fabulous cinnamon rolls by the way. Is there a store in your town that carries Udi's?

If you love to bake, you're a step ahead of people who don't cook. You get the best gluten-free food by making your own and there is very little that can't be made gluten-free. The flours handle a little differently but you can definitely make great baked goods once you get the knack of it. (And yes, you may turn out some doorstops, bricks, and hockey pucks at first. Just laugh and try again.) Gluten-free muffins and quick breads are probably easiest to start with. I love working with almond meal. It makes fabulous, moist muffins. I'd also highly recommend Gluten-free Bisquik and I have had good results with the Bob's Red Mill gluten-free bread mixes. Here is my favorite gluten-free blog for inspiration. Open Original Shared Link

Also, get in the habit of putting a snack in your purse. I never leave the house without a Larabar. You never know when you're going to be somewhere that it's difficult to find gluten-free food and having that safe snack can make the difference between feeling left out and hungry and being relaxed.

I hope this helps and the freak-out is totally and completely normal.

rosetapper23 Explorer

Many of us here definitely understand how you feel. Most of us had to live in a "mixed" home--I'm currently separated from my husband, so my new home is completely gluten free (the kitchen had been completely remodeled, so all the appliances have never touched gluten). I recall that it took me nearly two years to stop grieving for the foods I couldn't have. I especially missed pizza, and back then there weren't the great gluten-free pizzas available on the market today. Invariably, whenever my family ordered pizza, I'd end up crying in my room. After a while, my husband only ordered pizza if he knew I'd be working late or would be out of town. Eight years later, I still miss croissants and Krispy Kreme donuts....but I can pretty much substitute on everything else.

You're very lucky that you have so much experience with baking! You'll find ways to make just about everything you love. One of my favorite dishes is homemade macaroni and cheese, and I've learned how to make it taste just the way it did when I was growing up. For the longest time, the texture just wasn't right....but Tinkiyada elbow noodles cooked until al dente before baking seems to work. You'll see--it gets easier...and one day you'll stop feeling so sensitive about not being able to eat anything you want. If you truly have celiac, you'll probably feel so sick if you accidentally eat gluten, you'll begin thinking of certain foods as poison. As for the KFC, it wouldn't have been a good choice for someone without a gallbladder anyway.

Now, there still is the possibility that you don't have celiac. In six months or so, you might ask for a follow-up endoscopy to see if your villi have returned to normal. If they have, you'll need to make a choice. You could continue to eat a gluten-free diet because it seems to be helping your condition, OR you could do a gluten challenge for a few months and return for yet another endoscopy to see if there's any damage. If there's no damage, then you probably don't have celiac.

In the meantime, though, you really should try to be good on your gluten-free diet. Believe me--many of us were tempted at times to cheat (and I'll admit that I did), but the damage that can be done can have lasting effects.

Welcome to the Forum! And if you would like information on celiac support groups, please let me know in a private message.

butterfl8 Rookie

The good news? Yay for wonderful hubbys! Since you were so sick prior to Dx, I would think and hope that your in-laws are a bit more accomedating. I would suggest that you (or, if you're more comfortable with it, your husband) talk to your in-laws and just let them know what adjustments you NEED. So that you aren't that horribly sick EVER AGAIN! If they know that some foods will upset you, then maybe they can be considerate and prepare those when you are out of the house. If they know that you need time to adjust to these things, then maybe they will be able to work with you. And with any luck, everyone wants to keep you healthy and out of the hospital again. My mother-in-law was/is more supportive of me as a celiac compared to my mom, who was dx'ed celiac after I was. I'm more sensitive than the rest of my family, so...

But allow yourself to grieve. And make sure that the kitchen has a safe space for you. That's super important.

(((((HUGS)))))

-Daisy

Adalaide Mentor

Thanks! It's good to know I'm not totally off my rocker for crying about really stupid things. My husband's mother is trying to be helpful and supportive and as much as I love her she isn't necessarily the sharpest tool in the shed. Her husband (who is not my husband's father) is a complete nutjob to be perfectly honest. He thinks every health issue can be cured with whatever fad he's into that month. He bought some sort of healing laser thing and keeps trying to talk me into letting him use it on me. As open minded as I am, I'll leave my healthcare to people with clues thanks. My aunt has a gluten sensitivity and after about a decade has been able to find a balance that works for her which is a mostly natural diet with only occasional and carefully chosen sources of gluten and dairy. Sadly she lives 2000 miles away, but fortunately when I go back home to visit I know my family already understands how serious the issue is and I won't have to worry about being called some kind of weirdo. (My dad might be weird about it but I have long since learned to simply take everything he says with a grain of salt and shrug it off.)

My mother-in-law is being really good about the kitchen. I've got a space in the pantry and I'll have to add a container for my own cooking utensils and cutting boards and such as well. I picked up one of those single server type blenders which I'm loving and everyone knows not to use it or even wash it with the sponge that is used on everything else in the kitchen. I suppose I'll have to find a bit more room on the counters for things like a new toaster and maybe a deep fryer so I can have some fries sometimes. (I know I shouldn't but I hate fries from the oven.) I realized tonight when I wanted just a little pat of butter for my peas that I can't even use the same butter container as everyone else. The entire kitchen will soon look like Noah's ark, everything two by two. :D

My husband and I are lucky and pay a ridiculously low rent and it is his mother's house. I can't just be like "oh sorry, I cried about KFC last night so it would be super if you just don't bring it home with you." I don't work outside of the home and have been far too exhausted to bother having a social life so I'm pretty much always home. Since we rent the basement (yeah... cellar dwellers it's hilarious) I don't actually smell anything unless I decide I need to do laundry, eat or cook so it isn't as awful as it could be.

zimmer Rookie
Since we rent the basement (yeah... cellar dwellers it's hilarious) I don't actually smell anything unless I decide I need to do laundry, eat or cook so it isn't as awful as it could be.

I lived for a while in my mom's basement. I set up a table with a heating element (like a little stove)and a toaster, etc. and shelves for food, and had a refrigerator. It was basically a kitchen without a sink. I used a tub for dirty dishes then washed upstairs in the kitchen, and sometimes in my bathroom.

Maybe you could have similar set-up to keep your stuff separate. It worked very well once I got it all arranged.

It sounds like you are in a supportive environment - I hope it all goes well!

AVR1962 Collaborator

You are going to go thru alot of emotional ups and downs and there may be times where you wonder if the diet is worth it. The cravings may call your name and you may cry BUT once you get past the withdrawls and you actually see for yourself how much better you feel, I can guarantee you that you will never go back and you will not miss these foods anymore. My husband and teen daughter still eat gluten foods and for awhile I tied to get them to join me in my diet but then I relaized, why? Unless they have the sytems it is going to be meaningless to them. I cna now buy them gluteny cookies and I am fine with it. It's okay to grieve and it's okay to get mad, it's okay to blame and it's okay that others can eat gluten. What matters is what you put in your body and how you feel, keep your focus there....you!


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Adalaide Mentor

I lived for a while in my mom's basement. I set up a table with a heating element (like a little stove)and a toaster, etc. and shelves for food, and had a refrigerator. It was basically a kitchen without a sink. I used a tub for dirty dishes then washed upstairs in the kitchen, and sometimes in my bathroom.Maybe you could have similar set-up to keep your stuff separate. It worked very well once I got it all arranged.It sounds like you are in a supportive environment - I hope it all goes well!

That sounds like a really great set-up. We do keep a mini fridge and have a shelf for some types of snack foods that we won't have to go to the kitchen for. Sadly I found out after buying a coffee pot so I could have hot chocolate at my desk that just that one little addition will blow the circuit breaker. For some whacky reason the entire basement except the bathroom is all on one circuit so we have to be really careful. With computers and all our other electronics and a fridge we're kind of at capacity.

I made what I hope is my last trip to the store today for things I didn't realize I need. Picked up my own cutting boards, a wooden utensil for the wok and a bunch of containers to keep the approximately billion types of flour I'll be buying. I found some gluten free soy sauce and have vowed to learn to make killer stir fry since I have a love affair with vegetables. Now if only I can learn to cook rice without screwing it up.

Skylark Collaborator

You might make one last trip to the store. If your MiL doesn't mind an appliance upstairs, rice cookers are fabulous for cooking rice without screwing it up. You mentioned a deep fryer, but do you make french fries more often or cook rice more often?

For two people I'd recommend a 3-cup size. I regret getting a 5 1/2 cup model because it won't cook a single serving. You can go with a very basic model like a Panasonic cooker or spend a bit for a Zojirushi with a timer, keep-warm, brown rice setting, and a fuzzy logic chip that adjusts cooking time and temperature for a more consistent pot of rice. The Zojirushi cookers are REALLY nice but definitely spendy.

Adalaide Mentor

You might make one last trip to the store. If your MiL doesn't mind an appliance upstairs, rice cookers are fabulous for cooking rice without screwing it up. You mentioned a deep fryer, but do you make french fries more often or cook rice more often?For two people I'd recommend a 3-cup size. I regret getting a 5 1/2 cup model because it won't cook a single serving. You can go with a very basic model like a Panasonic cooker or spend a bit for a Zojirushi with a timer, keep-warm, brown rice setting, and a fuzzy logic chip that adjusts cooking time and temperature for a more consistent pot of rice. The Zojirushi cookers are REALLY nice but definitely spendy.

I was at Wal-Mart just kind of browsing the appliances and saw the rice cookers. I didn't even know such a thing existed! I got really excited but decided to wait until I could do a little research and find one that is within my budget that is at least decent. I was pretty serious about my coupons before this but that meant a lot of processed foods that were hardly what we should have been eating but were cheap. In a day we quadrupled our grocery bill just to feed me, and that's without all of the special goodies like the pizza crusts and bread. After the rice I ate Friday night (I cooked it and by God I was going to eat it) a rice cooker sounds positively heavenly. I had lumpy and slightly burnt sauce on my stir-fry too. If only there were a magic appliance to do that for me too!

pricklypear1971 Community Regular

If you can find Chebe mixes near you they are inexpensive and easy - bread, pizza crust, etc. I can generally split a pizza crust mix in half (don't mix it up). You could do the same with other mixes.

I find I buy very little gluten-free stuff. On top of expensive it usually tastes weird. Beer is an exception, btw!

I buy rice crackers, pasta, flour, a loaf of Rudi's bread once in a while, An experiment here and there if i see something interesting, and gluten-free flours to play with mixes. Otherwise it's mainstream stuff.

Skylark Collaborator

The trick to stir-fry sauce is to make cornstarch paste with about 1 part cornstarch and 1 or 2 parts cold water to make a smooth paste. Then push the vegetables aside and add cornstarch paste a little at a time to the boiling juices in the bottom of the wok, stirring well as you do it.

Here is how you cook rice on the stove. Brown rice takes a little more water.

Open Original Shared Link

Most of us find that we feel a lot better eating a natural diet like your aunt. Our sensitive digestive systems can't handle "junk" very easily. Probiotics are very helpful, and you might try making homemade yogurt or sauerkraut to get some healthy bacteria into your diet. You also may find you do better without additives like nitrites, nitrates, and sulfates. Keep a close eye on corn, soy, and dairy too. A lot of us are dairy intolerant, soy is a close second, and some celiacs find grains like oats and corn troublesome even though they don't have gluten in a strict sense.

I had to make it through school gluten-free. Once I got into the habit of cooking rather than eating processed foods, my grocery bill went DOWN rather than up. My cheap foods were rice (preferably brown), potatoes, corn tortillas, dried or canned beans, eggs, and seasonal produce or frozen veggies on sale. I ate eggs with grits, leftover rice, a tortilla, or home fries for breakfast a lot rather than buying expensive gluten-free bread. You can watch for sales on cheese and yogurt (Yoplait is gluten-free) if you're certain you're not dairy-sensitive. I still eat a lot of cheap meat cuts, especially since I'm on GAPS diet and supposed to eat antibiotic-free, natural meat. You can braise a tough cut of beef in a crockpot with red wine and it comes out beautifully.

My love for baking got channeled into a love for cooking in general. Now I am always making fabulous soups and stews, learning to make lacto-fermented veggies, and experimenting with the herbs out in my yard. The next project is learning to make flax crackers in the food dehydrator I got for Christmas. :)

Adalaide Mentor

Thanks for the tip on cooking rice, I'll try that out tonight. Things are a little whacky for me at high altitude but I'll learn to adjust like I did for baking. (I get to start that experimentation all over again... joy) I'm supposed to avoid most dairy but eat yogurt every day. I'm glad to see that sauerkraut is not just amazingly delicious but good for me too. Cheap pork, sauerkraut, crock pot and I've got food for half a week. My husband won't touch it which is fine by me. I might just use my fork to stab anyone trying to touch it.

I'd be all over gluten free beer if I drank alcohol at all. To be perfectly honest right now I'd give a leg for one with a pizza to match.

rosetapper23 Explorer

Adalaide,

Where do you live? There are a LOT of pizza joints and restaurants that offer good gluten-free pizza. As for frozen, Against the Grain Gourmet has a super pizza, and I even like the individual-sized pizzas made by Glutino. For cheap gluten-free crackers, the best ones are also the cheapest--Crunchmaster crackers--and you can find them in the regular cracker aisle. Glutino also makes a gluten-free crackers that's similar to Ritz crackers. As for pastas, Tinkiyada and Glutino each make lasagna noodles, and there are several brands of ravioli out there. Most of us seem to prefer Tinkiyada pastas (for spaghetti, mac and cheese, etc.), but you should cook them for fewer minutes than they indicate on the directions.

Adalaide Mentor

I live in Utah. There is a pizza place that says on their website that they have 10" gluten free pizzas for between $15 and $20 each. I almost fell out of my chair when I saw that. I haven't called yet to see if they make any effort at all to prevent contamination. I've worked in two take out pizza places and flour is pretty much in the air, it coats literally everything. I just don't know if there is such a thing as "safe" pizza from a restaurant unless it's dedicated gluten free.

I can say after tonight that I am incapable of cooking rice. I think I'll stick to what is left of my Minute Rice until I get a little rice cooker. I had heard all sorts of amazing things about Tinkiyada pasta and have a pack of spaghetti in the pantry. I'm going to make it tomorrow. I have always used Classico pasta sauce so I'm safe there. I've never been a huge ravioli person but I ate pasta several times a week. I can't wait to make a pan of mac & cheese.

Skylark Collaborator

Sounds like your first baking project is pizza crust! Boy, I can't even think about pizza right now. I'm avoiding starch, currently sensitive to dairy, and I think I might be reacting to tomatoes too. :lol: About all I can have are the toppings. I suppose it's not much of a loss since to me pizza was mostly a convenient platform for olives, sausage, and mushrooms anyway. I make flax meal foccacia now with olive oil, onions, basil, and mushrooms.

pricklypear1971 Community Regular

Mac & cheese is easy - just use rice pasta instead of wheat. And cook the pasta a bit less before adding it to your mix -rice pasta can get mushy easily. But I don't reco bean or corn pastas in casseroles.

Buy a gluten-free pizza crust mix and make a pizza at home. Much less expensive, and no cc risk. A cast iron skillet or one of the holey pizza pans help get a crispy crust.

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