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This Sucks


positivenrgfairy

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positivenrgfairy Apprentice

Did anyone else experience severe depression upon realizing what was happening to them? My husband doesn't understand; I feel like I can't eat ANYTHING. I am under so much pressure from my job and going to school full time and i don't have time to cook one meal a day let alone three. i just want a freaking sandwich.

I just hate this. please please tell me I am having a normal reaction and that these feelings of resentment towards people in pillsbury commercials is normal.

please tell me it will pass.

this sucks.


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happygirl Collaborator

All entirely normal. Hang in there.

Shess0816 Apprentice
Did anyone else experience severe depression upon realizing what was happening to them? My husband doesn't understand; I feel like I can't eat ANYTHING. I am under so much pressure from my job and going to school full time and i don't have time to cook one meal a day let alone three. i just want a freaking sandwich.

I just hate this. please please tell me I am having a normal reaction and that these feelings of resentment towards people in pillsbury commercials is normal.

please tell me it will pass.

this sucks.

What you are feeling is absolutely completely normal! My first few months going gluten free were just obnoxiously difficult. I had no clue what to do, what to eat, I felt left out, isolated, frustrated, happy, sad, guilty... I mean just the range of emotions you go through is enough to exhaust ANYONE!! I was also really bitter towards people in commercials who were enjoying chocolate chip cookies or cakes or pizzas or pastas.... I even felt bitter for a while with my family because they could enjoy all the things I used to love! Then I started feeling guilty because I was "burdening" them with my disease and eating style..... We had to stop going to some of our favorite restaurants because there was nothing I could eat there... I was so frustrated all the time and tired of answering mountains of questions... But at some point between the frustration, guilt, and anger, I woke up one morning and realized how AMAZING I felt. I was happy, alert, no stomach pain, no joint pain, headaches, itchy skin...my hair stopped falling out...I could go out and exercise again...and I realized that this is actually a very good thing. I am actually happy...for the first time in 9 years, I know what it feels like to be happy and not be sick. It's an extraordinary thing when you have that realization.

Give yourself some time. I promise it does get better. It's all part of the coping and understanding process!!

P.S. quick tip on the cooking: Thai Kitchen rice noodle bowls are awesome ....all you have to do is add hot water! They make a great lunch and are very quick!

positivenrgfairy Apprentice
What you are feeling is absolutely completely normal! My first few months going gluten free were just obnoxiously difficult. I had no clue what to do, what to eat, I felt left out, isolated, frustrated, happy, sad, guilty... I mean just the range of emotions you go through is enough to exhaust ANYONE!! I was also really bitter towards people in commercials who were enjoying chocolate chip cookies or cakes or pizzas or pastas.... I even felt bitter for a while with my family because they could enjoy all the things I used to love! Then I started feeling guilty because I was "burdening" them with my disease and eating style..... We had to stop going to some of our favorite restaurants because there was nothing I could eat there... I was so frustrated all the time and tired of answering mountains of questions... But at some point between the frustration, guilt, and anger, I woke up one morning and realized how AMAZING I felt. I was happy, alert, no stomach pain, no joint pain, headaches, itchy skin...my hair stopped falling out...I could go out and exercise again...and I realized that this is actually a very good thing. I am actually happy...for the first time in 9 years, I know what it feels like to be happy and not be sick. It's an extraordinary thing when you have that realization.

Give yourself some time. I promise it does get better. It's all part of the coping and understanding process!!

P.S. quick tip on the cooking: Thai Kitchen rice noodle bowls are awesome ....all you have to do is add hot water! They make a great lunch and are very quick!

That describes my feelings perfectly! I am feeling really overwhelmed. Im glad someone out there understands.

twe0708 Community Regular
That describes my feelings perfectly! I am feeling really overwhelmed. Im glad someone out there understands.

I hear you! I am very close to going and having a burger today for lunch! It stinks that we will never get a break from this unless by choice, but then you pay the price.

missy'smom Collaborator

I struggle from time to time. Sometimes we just have to take it one day at a time, let today's troubles go at the end of the day and start over with a clean mental slate the next day, not carry over frustrations from day to day. Remind ourselves that "this too shall pass". Sometimes we have to scale back our expectations, eliminate things from our schedules etc., ask ourselves what "really" needs to be done today? What are the priorities and what things can just be let go. I am only one person. There is truely only so much I can do and pushing myself too far just perpetuates me feeling lousy. I'm not preaching to you. These are things I tell myself. I don't know about you but I find it so much easier to do for others than to take care of myself. Just this week, I told myself that I MUST pencil myself in somewhere in the schedule SOON because I've been doing for everyone else lately-even if it's just the stuff that "needs" to be done for them.

It may not seem so right now but there are really alot of gluten-free options out there. Stock up on some Healthy Choice or Progresso Chicken and Rice soup for quick meals. Progresso Chicken and Corn chowder and Potato Broccoli Cheese Chowder are also gluten-free. Buy a thermos and take the soup along. Dinty Moore Beef Stew is gluten-free and comes in microwavable containers. When you do have a little time on the weekend, buy a gluten-free muffin mix and bake them and freeze. Then you can take one out of the freezer and warm up in the a.m. or take with for lunch. Soup, muffin, fruit and you're good to go.

There are ways of navigating this. Let us know what we can help with.

angieInCA Apprentice

The best advice I ever received was from my internist after my diagnosis. She said I needed to realize that I was going through a life changing event much like a death of a loved one. That I would go through the 7 stages af grief and the best thing for me was to recognize this and embrace it and allow myself to go through it. She also suggested that I start a list of all food I could eat and focus on that list. Not to focus on the things I can't eat. This has been a great help for me.

I found resturants I could eat at and what was safe on their menu. That way when I do go out the overwhelming decision of what can I eat is eliminated. When I shop I focus on what I can have and not what I can't have. This is hugh for me. In the beginning I was overwhelmed but changing my focus really reduced my stress. Now when I have a craving for an old favorite I figure out what I can substitute to satify that craving.

As for not having time to cook.....On Sunday afternoons I bake or grill a bunch of chicken breasts to take for lunch all week long or for a quick dinner when I don't have time to cook dinner. I just add some quick frozen veggies and rice or beans. Or I make a salad with chopped chicken on top. My crock pot has become my new best friend. A cheap cut of meat simmering all day with some Liptons Onion soup mix makes a great meal. Also Tacos are a great fast meal. If you are really short on time just make all the fixings and make a Taco salad with gluten-free corn chips.

Lucky for me I have In-N-Out Burger that makes a great Protien Burger (no bun wrpped in lettuce leaves) and gluten-free fries for those burger cravings. Other resturants do it too, you just have to plan and ask.

Yes, feeling depressed and overwhelmed is natural but changing your focus can greatly change that.


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ang1e0251 Contributor

You're not alone. It's super tough dealing with life then dumping these big changes on top of it just seems to send you 'round the bend at times. You are going to grieve for this loss in your life. That gluten part of your life died and you have to mourn it.

There will come a point when you realize that no matter how much you've lost, you've gained so much more. It's the feeling normal, thinking again, having the energy to work through the day and even enjoy your family again. It will get easier, hang in there.

CGally81 Enthusiast
Did anyone else experience severe depression upon realizing what was happening to them? My husband doesn't understand; I feel like I can't eat ANYTHING. I am under so much pressure from my job and going to school full time and i don't have time to cook one meal a day let alone three. i just want a freaking sandwich.

I just hate this. please please tell me I am having a normal reaction and that these feelings of resentment towards people in pillsbury commercials is normal.

please tell me it will pass.

this sucks.

Still going through the resentment, since I'm still going through the "hungry all the time" recovery phase, and knowing that if I eat certain things, it'll only get worse. The fact that I started going through a second withdrawal phase after removing a food that I didn't realize had gluten in it means basically that I'm going through again what I'd been going through before.

Hang in there, as cures and a vaccine are in development. They'll take years to arrive, but they're coming along pretty well, from what I hear. I can't wait. This disease will be but a memory for us in maybe 5 years, and totally unknown to future generations once they're vaccinated against it!

Dada2hapas Rookie
This disease will be but a memory for us in maybe 5 years, and totally unknown to future generations once they're vaccinated against it!

:D We should remain optimistic, but we shouldn't jump the gun...

sunnybabi1986 Contributor

Wow, I can absolutely identify with this post and with the mention that going through this is similar to the stages of grief when you lose a loved one. I'm having such a hard time giving up so many foods I love. Some days I don't eat anything. Some days I can hardly get out of bed. I can't visit other people right now because I see all the food they're eating that I can't have and I just want to hit people in Wal-Mart with normal cereal and pasta in their carts. I'm definitely going through the entire spectrum of emotions and I really feel so isolated, like nobody around me understands what I'm going through. Like giving up 90% of the food I normally eat on daily basis is not life-changing. I just want to get out of this depression but I'm not sure where to start. I can't exercise, I'm still so exhausted I can barely leave the house. I'm scared to eat anything anymore and so I'm hardly eating, which isn't helping at all. It's encouraging to know I'm not the only one out there feeling like this, but I still feel like I really need some help along the way. My insurance won't cover this, though, since I had symptoms before I applied, and it's a "preexisting condition." Bleh. It does suck.

missy'smom Collaborator

Sometimes establishing a routine can help. When I first started gluten-free I could barely get through my days. I remember that I made a decision that everyday I would get showered and put on makeup before kiddo got home from school so that he could come home to a put-together mom. We also sat down and had a snack together, nicely arranged on a plate or in a dish. If I did nothing else that day, at least I did that. On and off when I feel stressed or have a hard time making it through my days, I do things like stretches before bed(or re-comitt to), a cup of tea at a certain time of day, everyday. These things bring comfort, especially if they are predictable, we can look forward to them or they can serve as mile markers along the road to keep us going. They are also ways of caring for ourselves.

GFinDC Veteran
Did anyone else experience severe depression upon realizing what was happening to them? My husband doesn't understand; I feel like I can't eat ANYTHING. I am under so much pressure from my job and going to school full time and i don't have time to cook one meal a day let alone three. i just want a freaking sandwich.

I just hate this. please please tell me I am having a normal reaction and that these feelings of resentment towards people in pillsbury commercials is normal.

please tell me it will pass.

this sucks.

Ever notice how that Pillsbury dough boy is all fat and bloated? :o

I also do most of my cooking on the weekend. Saves time and makes the week go easier.

The gluten-free diet took some adjusting for me. I think it is as much habit as anything. Once you learn a new habit of eating gluten-free the old bad foods are not so attractive. And there are alternates available for most anything if you want them. I'd say hang in there too, it gets easier. After a while that is. :)

Glamour Explorer

I am really mad sometimes, especially at the food industry, sneaking gluten into every nook and cranny, where it is not a necessary ingredient, but a cheap a** filler.

I already try to eat organic, fresh, preservative free when I can.

Looking for gluten-free has made me notice and further question all of the preservatives, MSG and crap in the food supply. I don't know which of the huge additives are made with gluten. I am 51 years old and the small print is killing me.

I am exhausted from trying to cover the bases, I need a gluten free toothpaste, asprin and ibuprophan, as well as benedryl are gluten-free. I am paranoid about makeup, lipstick, chapstick, lotions, shampoos, so I quit using almost all of it. I am too tired to research every little thing .

Not to mention the expense of running out to buy it all. I have a freezer full of things with gluten. Any Amy's of Pamela's item is at least $4.00 a pop. I have actually gone to bed hungry, because I was too tired to find something in my house that is gluten-free.

I don't even know if my horrible rash is DH. I don't have insurance anymore and spent a fortune for bad diagnosis when I did. The usual - dry skin, scabies, etc

I also think I am reacting to coffee (the coffee itself, caffeine or milk) so I don't feel I have anything to look forward to in the a.m. to get me out of bed. I was going to by Chai tea last night but couldn't interpret the ingredients.

Is it gluten, coffee, dairy, corn? Ok tired of feeling sorry for myself.....

On the plus side, I am losing my belly and some weight. It would also be a relief to find out whatever is causing this so I can heal and go back to work and life.

Somebody should make a gluten-free Life Starter List, and Kit of Food, cosmetics, personal care items. It would be nice if gluten-free Items were in the same section of the store and every trip was not a 2 hour scavenger hunt for one bag of groceries. I would also like to see packages CLEARLY marked gluten-free as well as shelves. Some small stores are doing this.

soulcurrent Explorer
I am under so much pressure from my job and going to school full time and i don't have time to cook one meal a day let alone three. i just want a freaking sandwich.

Now that I absolutely 100% relate to. I'm in school 3/4 time and work full time. I struggle to find time to manage everyday things like cleaning the kitchen or spending a few minutes with my boyfriend or exercise (ha!). Cooking was always the least of my concerns because I could find something easy to make that minute. Now I have to set aside time to plan in advance, go grocery shopping more often (and the store with the gluten free stuff is a bit of a drive), and actually cook for myself. The plus side for me is I'm used to eating the same thing all the time.. My rice cooker is my favorite appliance and I just commandeered my boyfriend's Crockpot. I just had a turkey sandwich on Food for Life bread with Almond Nut-Thin crackers and a glass of milk (can still manage the dairy thank god). Yogurt, Corn Chex, rice, steamed cauliflower and baked potatoes are my big menu items. And yes now that I've written that out I realize how incredibly boring my diet is....

Hummingbird4 Explorer

This thread is really helpful.

YES, IT SUCKS!!! I feel sorry for myself a lot. But, I deal with it the best I can. I make good choices, I don't cheat, and I don't deprive myself either. But man oh man, I hate grocery shopping. You look around the store and see all these things you cannot have. Ever again. Even if you didn't WANT to eat that food, it's the knowing you CAN'T have it that sucks. And going out for dinner, going to parties, anything social. I feel like a hermit because I don't like to go out anymore and deal with it. I hate feeling *different* or *needy*.

But what choice do we have? Once we are diagnosed with celiac, our only option is to live a gluten-free life. Might as well make the best of it. Even though sometimes, it sucks. B)

Imanistj Contributor

I am going to chance it and say exactly how I feel because honesty appears to be accepted here. I told the truth and made many people angry on a previous list so I hope it doesn't happen here. First, please try to understand how rigid I sound--I am very slightly Asperger's Syndrome which is on the low end of the Autism spectrum. So I am on the low side and only slightly affected. Still, it is making it very difficult for me to accept the restrictions and changes required to eat gluten-free. I am 65 and started eating gluten-free sometime in August. After doing that for three weeks my doctor decided to do a biopsy (he had told me to eat gluten-free, and NOW he wanted to do a biopsy?) so I had about 2.5 weeks of eating gluten prior to the endoscopy and, guess what, NEGATIVE biopsy! Because I was positive for transglutaminase and the genetic studies, I decided I had to try going gluten-free for a period of time sufficient to test the diet. A few days after the biopsy I returned to eating gluten-free and I believe I am following the diet correctly. However, I still don't feel any different. My chief complaint is severe musle pain and exhaustion following moderate physical effort. I have always had an irritable bowel, but never as bad as celiac sprue.

OK, about how I feel emotionally. I have passed through several stages but have not come even close to acceptance. My major problem is that I absolutely LOVE to eat, as long as it is something I consider tasty. I am incredibly picky and I can't help it. I honestly taste the difference if certain foods have been frozen after cooking and I hate reheated meat unless it is totally camoflouged in a saue or casserole. I am intensely aware of the feel of food and object to numerous foods that other people can't understand I find objectionable. I am not being a smart ass--I really do feel food as much as I taste it. This brings me to the problem of gluten-free baked goods. Not one item I have tried since August that is baked and gluten-free passes my taste/feel test. I absolutely can't believe it when someone writes to a forum and says brand X bread, cake, brownie, etc.--either from a package, ready made, or home made from scratch-- tastes great, or is so good his or her friends and family can't tell the difference! If any of you are old enough to recall "All in the Family" where Archie and the meathead argue over Meathead's ability to know exactly which brand of cola he is tasting, and he gets them 100% correct in a blind taste test, well that is exactly how I am regarding gluten-free baked goods. I fully understand that I can still eat "all kinds of wonderful food like dairy, meat, fruit and vegetables" but I want to strangle anyone who tells me this. C'mon folks, that stuff is good for me and I eat that stuff all the time, as long as it conforms to my pickiness. The REAL reason for eating is BAKED GOODS!

So far, I haven't come to terms with my anger and frustration over not being able to eat any baked goods that taste and feel good to me. I am a good cook and I have tried many recipes or mixes that other celiacs have kindly suggested or recommended. Still, nothing meets my expectations. I want hot dogs and burgers on nice soft, white rolls. I want sandwich filling on soft white bread or, God forbid, on whole wheat bread. I want cookies and cake and pie crust that doesn't crumble and look and taste like sawdust.

As you can see, I have miles to go before I become used to eating gluten-free. I am an RN (retired) and comprehend the need to remove gluten from my diet. I am also Asperger's and it is my nature to cling to things that are "the way they should be" in my mind.

I am taking a chance exposing my true nature, feelings and perceptions because the others who have posted before me have been honest and the responses of the veteran forum members hasn't been harsh. I will now crawl back into my cave and try not to irritate anyone by being myself. Thanks for listening.

Nancy

I'll have a grilled cheese sandwich--no bread.

boysmom Explorer

I don't think anything you've said should upset anyone here. :) We all have varying levels of tolerance for change. I had gestational diabetes with my last pregnancy, and I realized through that experience that I'd rather have a tiny serving of 'real' dairy than a regular-sized serving of lite versions. To me, that stuff is not worth my trouble and some of it is just plain NASTY! lol *Maybe* after several months (years?) with no dairy at all I could learn to accept some of the alternatives. I can understand your frustration with gluten-free breads. I'm still searching for acceptable alternatives myself. I would suggest simply staying the course (because, in the case of gluten, eating a tiny amount is NOT a safe option) and maybe eventually your lack of those items in your diet will reduce your sensitivity to the texture issues? If not, being healthy is worth the sacrifice, in spite of the frustration.

I wish you years of health and joy and eventually, contentment in this new life. ((( hugs )))

ang1e0251 Contributor

I can't visit other people right now because I see all the food they're eating that I can't have and I just want to hit people in Wal-Mart with normal cereal and pasta in their carts.

When I was at that stage I started visualizing all the gluteny things I saw as poisoned. I pretended they had poison ivy in them, imagine ingesting poison ivy! Other posters have used dog poop! Would you really envy someone with a box of dog poop in their cart? You might secretly laugh of thinking how they would feel when they open it up! In restaurants this was very effective fro me. I needed the visualization to get over the envy.

I'm definitely going through the entire spectrum of emotions and I really feel so isolated, like nobody around me understands what I'm going through. Like giving up 90% of the food I normally eat on daily basis is not life-changing.

It is tough. There is no way around that. But you've taken a good step in joining this support group. We do understand and we will listen to your concerns.

I just want to get out of this depression but I'm not sure where to start. I can't exercise, I'm still so exhausted I can barely leave the house. I'm scared to eat anything anymore and so I'm hardly eating, which isn't helping at all. It's encouraging to know I'm not the only one out there feeling like this, but I still feel like I really need some help along the way.

As a healthy next step, I suggest finding a support group in your area. Even if it's far away and you can only go occasionally, sitting in a group with like minded people will be beneficial to you. Meeting other living, breathing people who can relate will give you the boost you need to claw your way back to solid mental health.

ang1e0251 Contributor

I am exhausted from trying to cover the bases, I need a gluten free toothpaste, asprin and ibuprophan, as well as benedryl are gluten-free. I am paranoid about makeup, lipstick, chapstick, lotions, shampoos, so I quit using almost all of it. I am too tired to research every little thing .

You might invest in one of the gluten-free product books so you can look things up on the list. You will be exhausted if you try to convert your entire life at once. The book is a handy crutch that can help you adjust. Also many groceries have their own product list you can access on their websites.

Not to mention the expense of running out to buy it all. I have a freezer full of things with gluten. Any Amy's of Pamela's item is at least $4.00 a pop. I have actually gone to bed hungry, because I was too tired to find something in my house that is gluten-free.

Time for a housecleaning. Get rid of all gluten foods. Sitting around mooning about foods in your freezer is agony. Stop torturing yourself. I always recommend that someone just starting out stay away from all the processed foods anyway. Start with whole foods seasoned with one ingredient spices. This serves a couple of purposes; first, if you're only shopping for meat, vegetables, fruit, beans and nuts, you will not need to spend time in the part of the store that will remind you of other foods; second, you will not have much to read in relation to labels. Keep canned fruit on hand for the munchies. When you get this way of eating under your belt, maybe a month. Then you can add new foods one at a time every few days. You can handle reading one label on each shopping trip, right? You can do this. It's hard and an adjustment, but you can do it.

I don't even know if my horrible rash is DH. I don't have insurance anymore and spent a fortune for bad diagnosis when I did. The usual - dry skin, scabies, etc

If it's DH, it should clear up in a couple of months or so when you're eating gluten-free.

I also think I am reacting to coffee (the coffee itself, caffeine or milk) so I don't feel I have anything to look forward to in the a.m. to get me out of bed. I was going to by Chai tea last night but couldn't interpret the ingredients.

I found I was reacting to coffee. It was giving me tremors. I drink Constant Commment tea now.

Somebody should make a gluten-free Life Starter List, and Kit of Food, cosmetics, personal care items. It would be nice if gluten-free Items were in the same section of the store and every trip was not a 2 hour scavenger hunt for one bag of groceries. I would also like to see packages CLEARLY marked gluten-free as well as shelves. Some small stores are doing this.

This would be a great business opportunity for you! I agree with you on the scavenger hunt. But give up the hunt for bit and eat simply for now.

ang1e0251 Contributor

And going out for dinner, going to parties, anything social. I feel like a hermit because I don't like to go out anymore and deal with it. I hate feeling *different* or *needy*.

I would say this is your perception and no one elses. Is that how you judge others? If your friend is diabetic do feel they are "needy" for looking for a sugar free drink? If you don't like cigarette smoke do you feel "different" because you sit in the non-smoking section? You might have if you grew up in the 60's like I did. The point of going out is the friendship and good times, not the food. The jokes your friends share aren't funny because you had to eat a naked steak and vegetables?

But what choice do we have?

These are your choices, to live life to the fullest. To never let a bread crumb define your life. To be courageous even when you feel selfconcious. To be glad it's gluten and you're not hauling an oxygen tank around and covering your bald head with a scarf.

Imanistj Contributor

I am lucky because I have used Colgate toothpaste all my life and when I checked on the net for the gluten-free status, it is gluten-free. I am also fortunate because I am retired, 65 and no longer trying to hold a job or catch a man ;) I don't use makeup except for a little color on my brows if I feel the need to look great. I guess I should check Maybeline for its gluten-free status. I never did find a lipstick I could keep on for more than an hour.

I did try eating in a restaurant recently, while I was in Maine (another word for Heaven). I chose Olive Garden because their site has a gluten free menu and I had heard from other celiacs that they can eat there. I got as far as being seated before I left, almost in tears. I asked the hostess about their gluten-free menu and she was clearly uncomfortable. She gave me a handout--not a menu-- about special dietary needs and as I looked at it she bruskly announced that I should step aside if I was going to read it and let her seat the folks behind me. I am a polite person and I was mortified that she decided in a brief moment that I was holding up the couple behind me. There was nothing to the handout and I was already through with it. She seated the couple and when she came back I asked to be seated so I could see a menu. As she seated me she mumbled something to a waitress who came to me immediately. She was wonderful! However, it is clear that this particular Olive Garden has very little experience with gluten-free dining. The gluten-free items were scant and when I chose an entee it was one that wasn't served for lunch. The waitress tried to pick a few items that the chef might be able to prepare gluten-free for me but by this time I was so uncomfortable I thanked her and left. I felt like a freak! I know it is best to call ahead but I was on vacation, on my way home, and decided I really wanted some Italian food. I guess I wil try again sometime, but for now I prefer to eat at home. One high point--While in Maine I went twice to lobster pounds and ate a lobster with butter and lemon and it was fabulous. I did take a chance and had some cole slaw which was great at the first place and ho-hum at the second.

I take 19 different routine medications (12 are prescription and three are twice daily) and I found pharmacists don't have clue as to their gluten-free status. Even a close friend who is a retail pharmacist doesn't know how to get this information. I e-mailed all but one company--can't find that info for Premier Value supplements I buy at Kinney Drugs, and distributed by the Chain Drug Consortium--and everyone responded. I take as many generics as possible and I am still in the donut hole and I was pleased to find the generic companies were as nice as the big name manufacturers. All but one company hedged a little and said things like the don't include gluten in the formula but can't guarentee no CC from other sources in the plants. I think this is a legal maneuver to protect themselves from an accidental contamination. I feel 16 of the 19 meds I take are safe and I wonder how much gluten I might be ingesting from the three Premier Value tablets, aspirin, iron and calcium. I continue to try to find a way to contact this company.

Thanks for the positive replies to my previous, lengthy post. I have some beautiful 20 ounce apples and I am going to experiment making a pie with a butter and crumb (crushed Rice Chex) bottom crust and skip the top crust. I do understand the power of positive thinking and can actually employ this thinking when I am not falling apart.

RubyRoses17 Rookie
Did anyone else experience severe depression upon realizing what was happening to them? My husband doesn't understand; I feel like I can't eat ANYTHING. I am under so much pressure from my job and going to school full time and i don't have time to cook one meal a day let alone three. i just want a freaking sandwich.

I just hate this. please please tell me I am having a normal reaction and that these feelings of resentment towards people in pillsbury commercials is normal.

please tell me it will pass.

this sucks.

I've known since June 2008 that I have Celiac Disease and I am FED UP WITH IT!! There isn't hardly any variety, the breads are dry and taste like cardboard, and I can't eat anything good at restaurants.

RubyRoses17 Rookie
I've known since June 2008 that I have Celiac Disease and I am FED UP WITH IT!! There isn't hardly any variety, the breads are dry and taste like cardboard, I can't eat anything good at restaurants, and I hate not being able to just go into any simple place and pick up a cupcake, a loaf of bread, etc. quote]
MaryJones2 Enthusiast

I am taking a chance exposing my true nature, feelings and perceptions because the others who have posted before me have been honest and the responses of the veteran forum members hasn't been harsh. I will now crawl back into my cave and try not to irritate anyone by being myself. Thanks for listening.

Imanistj, welcome to the board. We all have different approaches and struggles but we are all in this together!

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    3. - knitty kitty replied to Barcino's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Antibodies went up

    4. - cristiana replied to sh00148's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      22

      Vomiting - celiac or constipation

    5. - sh00148 replied to sh00148's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      22

      Vomiting - celiac or constipation


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    • trents
      Welcome to the forum, @ellieb13! The third party commercial celiac test kits are reliable but suffer from the same shortcomings that the average physician ordered celiac testing does. Namely, the number and kinds of tests included is pretty limited, usually just one or two antibody tests as opposed to a complete panel. Some who do have celiac disease have immune systems that respond atypically to the usual tTG-IGA testing that most docs order and so are missed. If IGG antibody tests would have also been ordered they might have been detected.  I could be wrong but I think there is also the issue that sometimes those with dermatitis herpetiformis do not have enteric involvement and do not produce serum IGA antibodies of the kind the tests are looking for. These people can only be diagnosed by skin biopsy during a dermatitis herpetiformis outbreak. Perhaps another forum member with more knowledge in this area can check my thinking here. Don't misunderstand me, I'm not trying to discourage you from opting for the commercial third party do it yourself kit. If you can afford it, go for it! I'm just trying to help you understand the limitations of such testing, particularly in your situation.
    • ellieb13
      Hi, I've feel like I've hit a brick wall. I've had eczema as a child and have mostly grown out of it, with an occasional flare-up (once a year at most). However, this time around none of the usual tactics work. I use a soap substitute, use 100% cotton clothing, even changed my mattress. The topical steroid given by the doctor usually does the trick after a few days but everytime i stop, it returns quickly. This doesn't feel like eczema to me as it is on my back, buttocks, neck and elbow whereas all my other flare-ups have mainly been on the backs of my knees and inside of elbow. My Grandmother is being tested for celiac disease in the coming days due to her "eczema" not responding fo treatment also. There are some celiac in the family but not close (grandfather's sister). Is this a possibility? I'd love to hear your thoughts and experiences. I would like to add that it's incredibly hard to get a GP appointment at the moment too so would the online home testing kits be a reliable testing option, or just a quick buck scheme?   Many thanks 😊 
    • knitty kitty
      @Barcino, Yes, do try cutting out dairy.  About half of people with Celiac Disease react to the protein in dairy, Casein, the same as to gluten because of similar protein segments.  Others have Lactose intolerance because their damaged intestinal lining, the villi, are damaged and can't produce the enzyme lactase which breaks down the sugar in dairy, Lactose.   Also, cut out processed gluten free foods.  Many gluten free processed foods use corn.  Some people with celiac disease react to corn the same as to the protein gluten because of similar-to-gluten protein segments of maize, the protein in corn.   Processed foods containing corn may also utilize microbial transglutinaminase to bind corn proteins together to improve texture.  Microbial transglutaminase is also used in dairy products like yogurt and ice cream to bind dairy protein casein together to improve texture.  Microbial transglutinaminase is not required to be listed as an ingredient because it is an enzyme considered to be part of the manufacturing process.  The increasing usage over the past couple of decades of microbial transglutaminase to cross link gluten proteins together in wheat containing products is suspected to be a trigger of Celiac genes, hence the increased numbers of people being diagnosed with celiac disease recently. Do consider supplementing with Benfotiamine, a form of Thiamin Vitamin B One, that has been shown in scientific studies to promote intestinal healing.  It also helps acne along with Niacin Vitamin B 3.  Vitamin D helps lower inflammation, and Vitamin C helps rebuild and repair damage.    I've had great improvement following the Autoimmune Protocol diet.  The AIP diet has been scientifically shown to improve intestinal health, too.  Developed by Dr. Sarah Ballantyne, a Celiac for her Celiac children.  It really does work quickly to reduce inflammation.  Although terribly strict,  improvement happens within a few weeks.   Hope this helps.  Keep us posted on your progress!
    • cristiana
      So glad @sh00148 that you now have a coeliac diagnosis for your daughter.   We really appreciate your update.  If we can help any further, do not hesitate to get in touch.
    • sh00148
      Morning All, Just an update, I got an urgent appointment through my contact with PALS. The doctor confirmed her levels were the highest possible so she likely had higher levels of inflammation. Since the appointment, they ordered a second set of bloods, but as many of you confirmed he felt there was no doubt she was coeliac so asked us to start gluten-free. Since starting around a month ago, we have had no vomiting and this is the first week that we haven’t had to give her movicol. She’s had a (currently) a two week break from winter colds which is unheard of for her as she used to have a permanent cold in the winter months. Her tummy is softer and deflating quite a lot and her faces looks a little rosier. It’s wonderful and although I know we will have tough times in the future and difficulties with eating out, I feel so happy that we can make her better.    Thanks all. 
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