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I Can't Do This


NewbieMarch2011

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Strawberry-Jam Enthusiast

I want to second the suggestion that you eat plenty of fish, if you can, also shellfish, shrimp, and other seafood, if you have no allergies. I too am disgusted at factory farming. (It is not so bad for fish--usually wild-caught but even farmed, I mean, they're fish, they don't really suffer per se, and even if they did mussels etc. don't.) Due to my religion I eat vegan half the year (wednesdays, fridays, and fasting seasons such as Lent) but I make an exception to the "nothing with a backbone" rule for fish because I need the protein. I'm vegan atm and am doing just fine gluten-free and, more recently, soy-free. I eat things like scallops sauteed in olive oil and lemon juice with basil and brown rice, or salmon on white rice with seaweed and sesame, or I'll have pumpkin soup with ground fresh coriander, or gluten-free triple almond cookies (almond milk, sliced almonds, almond extract), or for snacks gluten-free soy-free chips with peanut butter or sunflower seed butter... stuff like that. And lots of strawberries and bananas for my sweet tooth.

I do eat meat the other half of the year but don't feel so guilty since my personal consumption is drastically reduced. And I am going to try once I move home from college to get more grass-fed beef and free-range chicken or even buy meat straight from the farm if I can.

you can totally do this! Wheat and barley are mostly in CRAP food. yes, homemade bread and pasta is amazing and I miss it, but really most of the things I can't eat are CRAP and I don't want them anyway. And since I love to cook I see this new diet as an adventure in whole foods! can't get better than that.

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Brigit Apprentice

Hi Newbie,

sorry to hear about your frustrations and desire to live like this isn't happening to you. I have not read all the other replies, so it's quite likely this has been mentioned to you, but the health risks in not cutting out gluten are intense and unnecessary.

Besides some of the smaller aches and pains that will come from a compromised immune system, there are some biggies like: gastrointestinal lymphoma (cancer). It's at least 40 times more common in untreated celiacs than in the general population. Research shows that the mortality rate for celiacs who continue to eaten gluten is twice that of the general population.

I urge you to reconsider whether you want to sit with osteoporosis, dementia, anemia, headaches, miscarriage and canker sores to mention just a few for the rest of your life.

Yes the diet is hard to grasp and be excited about in the beginning. Trust me, I've had my share of ups and downs these last 6 weeks about it, honestly they've been more downs. But I want to give my husband a healthy wife, I want to be able to raise healthy children one day and I don't want to have some of the conditions I currently have.

You are going to need to sacrifice, to change your life and to educate those around you, but it will be worth it! Don't let this overwhelm you to the point where you choose to live oblivious of it.

You can do this, and you can do it well!

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fattycat Rookie

I found going cold turkey was the best for me. I had terrible cravings at first but I think it would have been prolonged if I had slowly weaned myself off.

A lot of us are in a similar situation to you. Before my celiac diagnosis I didn't eat meat (I dont digest animal protine well and I dont like the taste), and couldn't eat shrimp, msg, artificial sweeteners, oranges or egg whites. Then I couldn't have anything with gluten and now I'm also allergic to mushrooms. AND on top of that I live in Korea and I'm not Korean(I dont know what everything on a lable is)and the labling laws here are VERY relaxed. There are no doctors in this city who have ever treated someone with celiac disease and as far as I know there are only two of us diagnosed with it here! So, obviously there are not a lot of gluten free goods floating around here (Korean food has a ton of hidden gluten!). And yes, I'm married and my husband doesnt eat the same things as I do.

So, what did I do? First, I got my husband involved in cooking meals with/for me. He understood the situation a lot better when he was directly involved too. As for restaurants I chose a couple that I really liked and went to often and talked with the owners and chefs about my dietary options. I'm a regular now at these places and they work with me, make changes, offer suggestions etc. If they know you are going to keep coming back many chefs will willingly work with you.

I come from a family with 2 diagnosed celiacs and one (maybe 2) potentials. My father cheats. He cheats non stop. Gluten makes him depressed, so he feels helpless and cheats. Which makes him feel more depressed and like he cant do it and so he cheats more. It is a heck of a time breaking that cycle. He was an undiagnosed Celiac for years and he made our life hell as kids. Constantly depressed, stressed, OCD etc. Everyone thought he was a jerk, not that he was sick. Symptoms can appear in strange ways. My mother is a likely undiagnosed celiac. She has fibromyalgia and other related conditions but wont get tested. I think it's likely that she's gotten so used to being "sick" that she doesn't want to be well again. In the end though, it's a choice that you have to make for yourself and until you're ready you wont do it.

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IrishHeart Veteran

NEWBIE!

YOU STATED: "I just don't want to be crippled and in pain..."

Well, I'm going to be frank with you because that is exactly where you are headed.

You cannot imagine the debilitating pain and illness you will most surely develop if you do not adhere to a strict gluten free diet. My life is HELL right now --and has been for over 3 years--as I struggle to recover from the devastating effects of this disease. I too, lived with pain from "fibro" and "IBS" (these are syndromes and symptoms likely caused by the celiac ) for nearly 10 years...these are early warning signs of the damage done by a leaky gut from celiac!!

Right now, you are in classic denial and bargaining. You don't want to give up foods that you find comforting. None of us blame you one bit for that.

What we are trying to get you to realize is this....you WILL go downhill. You may develop burning pain and lose your ability to think. You may develop diabetes, rheumatoid arthritis, raging insomnia, anxiety that makes you afraid to leave your house, depression....it gets uglier and uglier. I dropped 90 lbs. and lost my hair, muscle mass, my ability to concentrate, read, speak articulately. You'll start to think you have dementia. I have burning nerve pain that makes me cry every day. I cannot walk, sit, or lie down without excruciating pain. At one point, I fell down after ingesting too much gluten. I spent many days on the bathroom floor, losing everything one way or the other, exhausted and in pain, thinking I'd rather be dead than live like this. I had to stop swimming, gardening, traveling.

You think fibro is tolerable?

It will get worse as you develop trigger points in the shortened muscles because you will have deficiencies of folate and B-12 and Vitamin D because the flattened villi won't be able to absorb nutrients.

BTW, if you are a vegetarian, you probably HAVE these deficiencies already and the UNTREATED celiac will make it worse. Panic, anxiety, depression--do these sound like they are painless?

Fibro is a cake walk compared to this kind of unrelenting pain. And no massages or PT will resolve it. A body ravaged by celiac is not going to rebound that way.

There is only one solution. NO GLUTEN. period.

I am not making this up. This is nothing to be messed with.

This is the reality of celiac. I call it the "dark side of celiac" because the only ones who know about it are the people on here who suffered for YEARS with hundreds of symptoms.

And YES, I suffered multiple miscarriages (I had no children, sadly) and I had a horrible, migraine-filled, anxiety- riddled, profuse bleeding and pain-filed EARLY peri-menopause for 3 years that resulted in a hysterectomy.

ALL UNTREATED CELIAC RELATED.

If you have the chance to stop the suffering, why not take it? It's just bread, for pete's sake.

If I had been given the "gift" of knowing HOW I could have avoided the disaster that came into our lives the last few years, I would have dumped gluten in a heartbeat.

I'm lucky. My husband "gets it" and went gluten-free too because he saw how his wife deteriorated so much and so quickly and he understands that this could kill me.

If your husband gets "grouchy" because you are a vegetarian, what will he be like when you need his help getting dressed because your pain level is intolerable and your muscles are so weak and taut that movement is impossible? All the meds in the world won't help. No meds touch this pain. They will just further irritate your gut lining.

Seriously, you two need to educate yourselves COMPLETELY about this disease and make a choice to live a better life or just go down the toilet. I wouldn't wish this chronic misery on anyone.

That said, in 3 months gluten and dairy free, I feel better than the emaciated, weak, wracked with pain walking- in-a stupor, "just kill me now" surreal trance I was in for 3 whole years. But I have a year or more of grueling PT to get back to being even remotely painless and able to do what I used to do.

It's your choice, but we are just trying to spare you the pain and anguish we have suffered. We'll help you, but you need to face the REALITY of this disease, hon.

Good luck.

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cap6 Enthusiast

Does it now seem like too much to bear? Yes. Does it now feel like it is overwhelming? Yes. Do you now feel like you are missing the "good" stuff? yes. Is it worth it to continue eating as you are? no Will you feel better? yes. Does it get easier and easier with time? yes. Would I ever eat gluten again? Given what I know now - no way. I am now 60 and felt like I was cheated out of years of my life and I am making up for it now. I lost my mom to what we now know was Celiac. She suffered untold pain and illness for so many years and what I wouldn't give for her to have been diagnosed. Guess it comes down to what you, and your spouse, can live with. Read the posts and listen to what others have said. Celiac is real. No joke to it.

I wish you and your spouse all of the best.

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cassP Contributor

My husband likes to eat out, a lot. It would be almost impossible to resist bread when everyone else at the table is eating it - and it's my favorite thing on the menu. Also I'm guessing it would be very hard to eat vegetarian and gluten-free in a restaurant. I could have salad, potato and a vegetable. In the past I would usually have a pasta or a grilled cheese sandwich. Grilled cheese is my favorite. Tonight we have dinner scheduled with friends at my very favorite Italian restaurant - it's been months since I've eaten there.

well, u would not believe the grilled cheese sandwich i had last week!!!!!! it was UNBELIEVABLE!!! i used Rudi's gluten-free multigrain bread with Irish white cheddar & mozzarella & sliced onion... i then sauteed spinach with evoo, garlic & TOMATO PASTE... dipped the sandwich in the spinach & tomato- OMG... i am not kidding- it was ORGA$mic :o

anyways- the inconvenience SOMETIMES at restaurants can be a pain- but really- the gluten-free diet can be extremely delicious- seriously!!

im sure it must be difficult to be a vegetarian AND gluten-free (i am a big meat eater- for health reasons. but i totally respect and understand the animal thing- if i could be healthy not eating them, i would). but- there are LOTS of people out there eating vegetarian & gluten-free. (bill clinton being one of them). also- u should look up this gal:

Open Original Shared Link

all of her stuff is gluten-free, and i THINK it's all vegetarian (some vegan). her stuff looks YUMM. i made her Chocolate Trufle cake the other day - it was DELISH :P

and Fyi- if you continue to eat gluten- it will wreak havoc on your thyroid even more. and the celiac will end up giving u vitamin & mineral deficiencies.. leading to everything from Dementia to Osteoporosis.. gall bladder disease, and the inflammation could lead u to heart disease...

i hope u really think about this seriously

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Takala Enthusiast

Are you residing in one of these gluten free culinary wasteland areas for restaurant selection, or as my husband came up with decades ago, a "no pancakes zone ?" (this was in the rural, rural midwest where we travelled very early in the day, were starving for a lunch, and then couldn't find a freaking restaurant for 40 miles that was open. )

The last time I had pasta out, recently, was off the gluten free menu at the Old Spaghetti Factory. They use rice pasta with their sauces. They also serve a small gluten free salad and ice cream for desert. I guess if I wanted bread, I would bring some with me, and I had some in the car because we had made the run to the gluten free bakery which is about an hour and 20 minutes from where we live, and stocked up on some stuff. The restaurant was on the way home. I mostly bake my own, but once in a while this is worth the drive to get treats, and the luxury of pointing to the display case and somebody else has done it. I learned of these places by using google to search for gluten free vendors, bakeries, and restaurants, and I have a lot of blog reviews bookmarked. Because we live in CA, there are also some places that are serving vegan and vegetarian gluten free options also, if you are willing to drive.

(And of course, I made grilled cheese sandwiches and homemade soup with that bakery made gluten free bread the next day.)

If you husband has a "sensitive" stomach maybe he should try it, also, as I can eat almost anything spicy as long as it's gluten free. My spouse eats gluten free at home, he cooks, too.

You can always mail order gluten free foods if you are not within driving distance. You can always dash off a gluten free bun in a cup in the microwave in a few minutes, for a quick bread. There are also gluten free mixes that you just add liquids to, and can bake in a loaf pan or in a bread machine, if you are not into experimenting. And they can be made vegan if you insist. (you may want to reconsider eggs, which will make life easier and add protein). This is not the end of bread, it's more of a retro thing as to how people used to do food - by cooking it.

When we travel, we always pack a little cooler with gluten free food "just in case" we get stuck somewhere. And I don't go into a restaurant starving hungry. I drink water and have a little handful of something, to take the edge off, if we have been doing exercise or something. I also try not to go into one where I must be absolutely 100% the next day, just in case I get cross contaminated, it's only happened once badly, but it was a doozy right on the eve of a holiday. Won't do that again.

I was so sick, and self diagnosed based on symptoms and am very highly motivated to stick to it, because I get ataxia balance problems, and arthritis flare ups (the idjiots tried to call it fibro) and bad back pain and kidney problems and eye problems if I eat gluten. I had the endo and fibroids and cysts from ****, too. I think my thyroid's slow, but I don't test out that way, but of course, I never tested out for the blood tests for gluten antibodies high enough, either. I currently have a PCP which bemusedly accepts my self diagnosis after I told him I hadn't eaten it in "x" years (I forget, I think it was 3 or 4 at the time) and he(( would freeze over before I did it again.

One of the symptoms of being glutened, is to want to continue to be glutened. Some people also get intense sugar and carb cravings, but that is a transition phase and can be helped by gluten free B complex vitamins and calcium and magnesium supplements - you are malnourished from the damage, and your body says this blood calcium imbalance feels like a sugar craving. Can't imagine anybody wanting their bones to look like mine did by the time I was in my late 20's- early 30's. Ugh.

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mikyraso Rookie

[recipes. In the meantime, Indian and Mexican food are generally good places to start.

I wanted to ask you some questions about going out to eat. I am a newly self diagnosed celiac disease and I am just dying to go out to eat and feel normal again.

I LOVE MExican food but I am scared to go out to eat because of CC. I have a favorite Mex. Rest. but I just don't know what to ask when ordering or what foods would be the safest to order. My 6yr old DD was diagnosed just 2 months ago and we did go out for the FIRST time a couple of weeks ago. I think that she and got some gluten, or was CC, when I thought, after looking at the allergy sheets it was ok for her . That really scared me so I have been avoiding restaurants altogether. I could really use some help .

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ciavyn Contributor

I have read through your honest emotions, OP, and the responses here. I wonder if anyone might agree that we have placed way too much importance and control in the hands of our obsessions. It’s just food! I say this as someone with an eating disorder. I am slowly breaking free from this, but it’s taken years.

But my initial impression, Newbie, is to ask if you have had some psychological counseling? You have been through a hellish ordeal, and as I read your posts, the pain of it is leaking through. I strongly suggest attending some therapy if you aren’t already. We are all a work in progress, and I recently had to return after many years on my own (mentally) to work on some more of the toxic crap that can get churned up in our heads. So I hope you will consider this, as I know what it is to go through hell and feel like nothing ever gets better.

The other thing to consider: do you like your life? What is it worth to you? Is it really worth bread? Is that the value you would place on it? If so, please see my second paragraph. :) Remember that we’ve all been there. We had to grieve the loss of our favorite foods too. But when someone hands you what might be the answer to all of your health issues – certainly several of them – and your response is, I’d rather have a roll, it’s time to gain some perspective. Again, I think you’ve been through so much BLEEP in your life that you are just overwhelmed with one more thing. But this “one more thing” might be an answer you’ve been waiting for.

Reality is, bread doesn’t taste as good as you think it does. It’s just one food. And given your diet, it would do you some good to add in some new foods! Yes, bread is yummy, but it’s just bread. It’s not ambrosia. If you start enjoying some gluten-free bread options – homemade ones – you will find that you have never truly tasted the joy of bread. The mixture of grains and textures will blow your mind.

Start really digging into your vegetarian diet, and if your husband is unhappy with your choices, don’t go to dinner with him. Why should you have to be miserable so he is happy? How does that even make sense? You are an individual. If he cannot – or chooses not – to respect that, let him go his way with his food, and you can call up a girlfriend who cares and go to a different restaurant. I went through something a little bit like you did, and quite honestly, I stopped caring. I wanted to feel good. So if he didn’t like it, that was his issue. I now am divorced and dating someone who goes out of his way to ensure that I can remain healthy and still enjoy eating out together. What a change! But you must put yourself first, and enjoy your life. Do not let food, or anyone else, take that away from you.

I honestly hope you can see how valuable you are as a person, and that it doesn’t have to surround food. You clearly have passions in life – your issues with factory farming, for example. Put your focus there, and let food be the fuel to get you where you want to be, not the pit-stop that you never leave.

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IrishHeart Veteran

I have read through your honest emotions, OP, and the responses here. I wonder if anyone might agree that we have placed way too much importance and control in the hands of our obsessions. It

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Kate79 Apprentice

My husband likes to eat out, a lot. It would be almost impossible to resist bread when everyone else at the table is eating it - and it's my favorite thing on the menu. Also I'm guessing it would be very hard to eat vegetarian and gluten-free in a restaurant. I could have salad, potato and a vegetable. In the past I would usually have a pasta or a grilled cheese sandwich. Grilled cheese is my favorite. Tonight we have dinner scheduled with friends at my very favorite Italian restaurant - it's been months since I've eaten there.

Tons of places have gluten-free options, including many Italian restaurants. Quite a few are starting to offer a gluten free menu online or at the restaurant. Some places will accommodate gluten free requests if you call ahead. I don't know where you live, but I encourage you to google 'gluten free restaurants' in your area and see what comes up. There are several chain restaurants that have become more sensitive to the gluten issue, too. You may be surprised with what you find. I'm lucky to have a really good Italian restaurant near me with a full gluten-free menu. Mexican and Indian offer a lot of choices, too, and are veggie-friendly. I'm not a vegetarian, but I do eat that way pretty often, and it is possible to do both with a little extra planning.

Also - this isn't ideal, but if your husband insists on eating at restaurants that can't do gluten free and you want to go with, you can always eat at home before going out. I've done this a few times at family functions where I wasn't sure that the restaurant could accommodate me. Hopefully you can find places that will work for you, but if not, eat a big plate of gluten free pasta & fresh bread before you go, and then have a salad and a drink at the restaurant. And you could bring your own bread, too.

I really encourage you to at least try eliminating gluten for a few weeks and see if you start to feel better. For me, it happened in a few days and I'd never go back. There's also a lot of celiac support groups out there that you might want to check out. There's one near me that has outings to restaurants, which is a great way to meet people and also see what's available in your area. Meet some gluten free folks and eat with them - and let your husband eat out wherever he wants with his friends.

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NewbieMarch2011 Newbie

Sorry - I was away for a few days. I am overwhelmed by all of you that have taken your time to respond to my post with so many helpful thoughts. Thank you!!! I am going to respond to a bunch of different people all at once here:

OMG - Pancakes! I make the best pancakes in the world. Not trying to boast, but I found the best recipe and use the best ingredients and anyone who has ever tried my pancakes agrees they are the best. Restaurant pancakes just cannot compare. I usually make chocolate chip pancakes - which are our favorite. If I go gluten-free, my pancakes are one of the things I will miss the most - and my husband is still going to want them. Making them and not eating any would be very hard.

As far as my vegetarianism - I do eat eggs and cheese - but no meat, chicken or seafood. My rule is that if it blinks or sh*ts - I don't eat it.

As far as counseling goes - I do go to counseling regularly. And I have been through a lot - way more than I've gone into here. I do have my passions. But I also have some mental issues. There - I've said it. It's like the last taboo. People will talk about the most intimate details of their lives - but no one admits to having mental health issues. I am here in this life to love and take care of my kitties. Other than that - I could leave this world tomorrow. While I am here I try to make the world a better place. I do charity work to help animals. This celiac diagnosis (biopsy and bloodwork) has filled me with apprehension and confusion and a feeling of being overwhelmed.

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IrishHeart Veteran

Oh, but Newbie, you can have pancakes again--you just have use different flours, that's all! I promise you, it's going to be okay!!

Of course you are filled with apprehension and feel overwhelmed. WE ALL DID...some still do!

Your depression--is part of this disease!!! It's listed as one of the top symptoms. We all TALK about IT on here!! Not taboo at all!!

I am going to personal messenger you a list of symptoms so you can see how all of yours fit in and how they can be relieved by getting rid of the gluten.

HERE IS WHY depression and anxiety occur with celiac disease...it affects your brain function. Gluten acts as a neurotoxin, plus, the villi are atrophied in your gut, which means you do not absorb essential nutrients and vitamins, which leads to malnutrition. That is what Celiac is---a disease of malnutrition!

Depression and anxiety also result because you are not producing the neurotransmitters of seratonin and dopamine. And I am sorry, but being a vegetarian AND a celiac makes you susceptible to B-12 and Folate deficiencies and those cause a deficiency in those neurotransmitters as well and result in major depression.

You need to have your B-12, folate and iron, D-3 and thyroid levels tested right away and supplement if you are low. Your statement about leaving this world tells me you are in a lot of emotional torment and I am betting you are at least---anemic.

A whole slew of factors contribute to your depression, not just your life experiences.

WHAT I AM TELLING YOU IS...This depression could LIFT from you if you just follow the gluten-free diet!!!

Your therapy is a VERY good thing, but THIS gluten-free diet is a Major key to getting you well--physically, emotionally, mentally. In fact, please tell your therapist you have been diagnosed, so she/he can see how this is part of the problem.

Please hear me out....I felt the same way you do. I felt desperate and overwhelmed and depressed since becoming very ill. I had some depression after my many miscarriages (no children), but generally went on with my life. I was okay, but started going downhill physically. Heard the fibro rap, the IBS rap, etc....

Then, I got really sick with celiac disease and lost 90 lbs, rapidly... developed all the symptoms I told you about in my earlier post. I KNEW in my heart something was keeping me ill and feeling like death would be better than this. Why would I talk this way? I have a fantastic husband now, after a lousy divorce, etc...basically, a happy life!

Then ,I developed severe pain...Yet, I refused to succumb to the depression. I developed anxiety out of nowhere! things felt very "dark" and I was scared I was losing my mind. I went to a psychiatrist to ask what the heck was going on.. it was she, in fact, who talked with me at great length, helped me with my grief after losing my dad and then, took my concerns seriously. I asked her...why was I still feeling so LOW, I wanted to know. SHE suggested food intolerances to me---and I started researching---and here I am.

here's the good part...

In 3 months, my depression is lifting, the anxiety is vanishing and ONLY reappears when I have been glutened accidentally. I am no longer sleep-walking in sadness and misery through my own life. I was really bad---unable to concentrate or even drive my car anymore. there is more, but I'll cut to the chase... My brain was seriously impacted by this disease, yet it is clearing out. (I take no medications for depression.) I am telling you ....THIS IS PROOF that gluten makes this gloom and doom happen.

Read all the posts on here of what happens when people are glutened..they CRY, fall apart, feel agitated and overwhelmed..I have to battle the depression and fear because I am in constant muscle/joint/bone pain and cannot take meds, but I KNOW WHY I feel this way. I know it will only get better and better as I heal in my gut.

I have been through a lot of sadness and loss myself, and I know how difficult it is, but I am pleading with you to give this gluten free diet a chance because MANY people on here will tell you the same thing---depression lifts when you are not continuing the autoimmune assault on your body with the gluten. One woman told us she was diagnosed with bi-polar and is now, perfectly fine.

Wouldn't you like to be free of that dark cloud once and for all? That "fibromylagia" pain and live a full, happy life?? I applaud your charitable work with animals. I adore them too.

I am really begging you to give yourself the opportunity to be rid of that depressive thinking.

Here is your chance. You can do this. We can help. It is an adjustment to cooking and eating gluten-free, but it is NOT a death sentence, it is a LIFE giver. :)

Now, how can we help??? :)

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fattycat Rookie

IrishHeart really said it all but, I remember gluten free pancakes from about 10 years ago. My mom sent me a box and it weighed a ton! Then we made it up...you needed a cup and a half of oil to make one batch!!! lol Prepackaged gluten free foods have come a long way but even better is the availability of a variety of flours. There are plenty of places that deliver world wide. It's taken some trial and error but we now have a reciepe that tastes the same as our old "normal" pancakes.

And I get depressed too if I have gluten. My brain is a mess, I cant put thoughts together, I feel overwhelmed, cant say what I'm thinking, get depressed and start crying for no reason. I've accused my incredibly loving husband of not caring about me. I get terrified that he is going to leave me. Same thing happens with MSG. Since going gluten free I am probably the most relaxed I have been in my life.

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ciavyn Contributor

Newbie: I'm so glad to hear that you are joining the rest of us in talking with a professional and publicly here about mental health! Here, here! :) In exchange: I have ADD (much better now gluten-free), depression issues involving suicidal tendencies (thankfully relieved for now), PTSD, and an anxiety disorder. I call them "Jumbled Letters." They mean only the power I choose to give them. :)

Girlfriend, you and I must put on a pancake competition. I make some pretty awesome ones too! I switched over to Pamela's mix, then to Bisquick gluten-free. Both are very tasty. I add chocolate chips, peanut butter chips - you name it. It took some getting used to, working with different flours, but I'm good at it now.

Please hang in there. We welcome you here -- and there is nothing you've thought of that we haven't. Trust me. I have days when I've gotten into something that made me really sick, and I think, I should just have some more while I'm already sick. But then the reality of the damage to my body occurs to me -- a friend of mine almost died from this. And just like I gave up tanning because of a friend with skin cancer, I gave up gluten because I want to live well, regardless of the length of time.

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cassP Contributor

YES Newbie! gluten intolerance can give u the worst depression & anxiety- i KNOW big time- in fact anxiety was my BIGGEST symptom when on the "gluten challenge" before testing- i was ready to run someone over. ive also dealt with depression & clinical depression thruout my life. i am so much more balanced off gluten, and so so much more happier after getting on meds for my thyroid (also linked to gluten intolerance).

pancakes- oy... ya- well-> that can be a little tuff- ive had some BAD gluten-free pancakes.. actually one time my bestie and i made them with gluten-free soy & gluten-free oat flour and they were yum but those flours have to be certified- they're not always safe. i had frozen premade ones that werent ok untill i loaded them with salty butter, cinnamon, powdered sugar, and maple syrup :P

from what i hear- everyone swears by Pamela's pancake mix- supposed to be YUM

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NewbieMarch2011 Newbie

Thank you, IrishHeart for the information you sent. I am considering trying the gluten-free thing for a bit - but am worried about my husband accepting it. He is totally not on-board with my vegetarianism and I think he believes that a lot of people go gluten-free to be trendy and to demand extra attention at restaurants - which he hates. I told a co-worker about my diagnosis yesterday and she said that it sounded like my doctor wants me to live in a bubble.

I have a follow-up scheduled with my doctor in 5 weeks and I asked my husband to come with me. He is the one that demanded that I go see the gastroenterologist in the first place because I have had spells where I throw up frequently. I used to run errands on Sunday - ending with the grocery store. I would put away my groceries and then instantly vomit. It was really weird and happened 5 times in a row. However, the last time I vomited was 2-1/2 months ago. He sometimes comes to doctor appointments with me. I got really sick and almost died a couple of years ago and now he watches my health closely. However, he doesn't believe I have any problems with wheat because I eat it all the time. He thinks the whole thing is a mountain out of a molehill. I know a lot of you will look down on me for letting him dictate the situation - but it's not going to change unless he changes his mind. We'll see what the doctor says about it. Maybe he will accept it if he gets to ask questions and hear the doctor first-hand.

As far as the mental thing goes, I am hoping to get to the point of trying it out. While it may ease some of the chemical imbalances, there are other issues that will still remain. I have complex PTSD and night terrors. The events that caused this will not be erased. I have also been diagnosed with depression and anxiety. I have lots of female problems as well - and some other physical problems that are not included on the list of things connected to celiac disease. However, it would be great if some of the things that are connected to it would ease up.

I have not been to the grocery store since my diagnosis. Hopefully I will go this coming weekend and purchase some gluten-free foods to try. I think with me it will be baby steps to try to move in the right direction. However, whether or not my husband gets on board will be a big factor in how this progesses. I know this statement will anger some people - but that's my reality.

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IrishHeart Veteran

Here is the bottom line.

Celiac disease is NOT a fad and it is not something you "dabble in". It is an autoimmune disease, not an allergy. Untreated... (meaning you choose not to eliminate gluten)..it will bring you more illness and pain, possibly cancer. It will kill you.

If you are given a chance to live the remainder of your life in better health, physically and emotionally, you should take it.

That's it. It's up to you. Not your husband, not your co-worker. From their comments, it is obvious they have no clue what celiac disease is all about.

Do this for you! Commit to it completely--because halfway won't work. A small amount of gluten continues the autoimmune attack on your body.

You need to read up on this and understand what's going on so you can get well. Go to you doctor visit with a list of questions. Be well!

Best wishes.

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mushroom Proficient

Well, I really don't think that everyone on this forum is living in a bubble :D Sure, it might be a slightly different universe from the omnivorous folk, but it is still a complete universe and not a bubble. People are always willing to poke in their negativity oar, rather than being supportive. And to tell you that if you are different you are weird. :o But good heavens, we are all different, each and every one of us. Your difference is their weirdness, and vice versa. If we are to judge everyone on their differences we would spend our lives judging. Thank goodness for difference. But there is a difference between a fad or trend, and a necessity. It sounds like for you it is a necessity to eat gluten free. This is just like for someone else it is a necessity to take an antibiotic to cure an infection. We don't think it's weird that someone has to do that (although it is often overdone :o ), so why should a non-medical treatment for a condition be considered weird? It should be applauded.

I spent my life growing up with my parents, raised to worry about what other people will think, being given examples to emulate, don't make a fuss, toe the line, don't draw attention to yourself. Well, sometimes in order to live that way you have to self-efface and become a non-person whose needs don't count. If you have needs that are not the same as everyone else's, you have to listen to those needs and act accordingly. And if sometimes that makes other people take notice of us, well that's tough! Let them think what they may in their own small little world because we know what we have to do for us, and I would hope would not criticise what they have to do for themselves. People in wheelchairs attract attention; would you criticise someone who has to use one? People on crutches attract attention; but if they hobbled and didn't use them they would attract just as much attention. Should they hide under a stone.?

No, we just have to accept that sometimes in life we do have to be different and do something that is not like what everyone else does, and that it is necessary, and DEAL WITH IT. This is what I would tell your husband.

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GFinDC Veteran

It is not unusual for people who aren't gluten-free or celiac to not understand the problems it cause us. Heck, many people don't even know what gluten is, as related to celiac disease. Even many doctors seem clueless about it. How many of your friends know what an autoimmune disease is? Probably not many.

I think you have the right idea about your husband going to a doctor visit with you. If he understands celiac it will be easier for him to help you. Husbands can be helpful once in a while after all..., just ask my 2 ex-wives! :D

I don't know that you getting a widely known and understood disease would be a whole lot better thing right? I mean, if you could trade for cancer right now would you say, gee this is going to be too much hassle to have to deal with, or maybe diabetes or rhuematoid arthritis or fibromyalgia would fit your lifestye better? Most people don't get those kinds of choices of course, but you do. You can ignore the gluten-free diet and take your chances on which other autoimmune diseases will pop up and eventually do you in. Isn't it great to have choices? There was a poster few years back who ignored the diet. She posted after several years of being back on gluten to tell her story. She was eating gluten regularly and one day ended up in the emergency room in pain. They took several feet of her damaged intestines out and put a colostomy bag on her abdomen. Some fun that is!

Now, the thing you need to face is, you do have an incurable disease, and it is called celiac disease. Your husband needs to get educated about your disease and its requirements. 70 years ago people didn't know how to treat celiac disease so you would have been in pretty lousy shape. I don't suppose they even knew what caused those kids and other people to wither up and die back then and for hundreds or thousands of years before. Now we know and it is an easy treatment, called the gluten-free diet.

Sorry for all the drama! It isn't meant as a criticism at all. I understand very well that it takes some getting used to the idea of this disease. I think it is good you told your co-worker, and are thinking about trying the diet. Just make it a 50 or 60 year trial and you all set! :D The hard part of this diet is the getting used to something different. But that is not so hard if you take a positive attitude towards it and make it an adventure in eating. There lots of recipes on this board you can try. And lots of restaraunts doing gluten-free now too. And you aren't alone. They estimate about 1% of the USA population has celiac, and there are some studies recently estimating up to 6% of people may have gluten intolerance. But studies of gluten intolerance are just now getting started.

You may not have to wait 5 weeks to get more info. There are celiac support groups in many areas that have meetings and share information and news. Some groups have gluten-free goodies to share or have potlucks. Around DC they do potlucks and also have monthly gluten-free dinners at restarants. Check out the CSA (Celiac Sprue Association) for local group meetings.

On the off chance your husband would be willing to watch some video explanations of celiac disease, here are some threads with links.

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sb2178 Enthusiast

One really helpful step is to sit down a make a list of what you normally cook/eat. There's probably at least a couple of main dishes that are naturally gluten free. Even if you just rotate four or five dishes for a few weeks, that's a great way to start out. Flag a few recipes in your favorite cookbook, look at the list below, and remember the classic:

DON'T PANIC (and yes, I do have a towel ;-))

Post up a list of favorite foods that you like to eat and we'll brainstorm. Remember, you can eat all plain fruits, vegetables, beans, and most grains! Your list is probably longer than you think. This might be a good place to bring your husband in-- he might have some good ideas.

Here's a brief brainstorm of foods you should be able to make from just about any grocery store, and you can even buy gluten-free prepared products for some of them like baked beans or polenta (but it's cheaper to make it at home yourself).

potato chickpea curry with basmmati rice (it can be mild!)

black bean soup with tortilla chips

lentil soup

sweet potato fritatta

spinach, feta, and strawberry salad

polenta with sauteed mushrooms

fried rice with vegetables and tofu (you need to buy gluten free soy sauce but it's pretty easy to find these days)

three bean salad with roasted sweet potatos

gluten-free pasta with any vegetable combination or plain tomato sauce

risotto

stuffed baked potatoes

baked beans

Buy a box of gluten-free chex for breakfast. Eat leftovers for lunch, and stock up on junk food/comfort foods to get you over the first panic stage. gluten-free oreos tend to be pretty good (but I was never really an oreo eater), ice cream is often okay, potato chips and tortilla chips are generally safe BUT read the label. Olives, nuts, fruit, veggie sticks, hummus, bean dip, and cheese are some healthier snack options! I've actually got a couple of example gluten-free meal plans I'll message the links to you, or you can google other folk's blogs and information. Major food companies have serious websites that might be helpful.

You can do it! You'll probably feel better in a couple of weeks, especially if you get those vitamin levels checked. Weird things, like my insomnia, disappeared after an MD told me to start magnesium because my levels were on the low side of normal.

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adab8ca Enthusiast

It is daunting, that's for sure...I do feel for you although I do want to poke your husband hard for not being supportive. Not eating in restaurants is not the tragedy that people think it is. .I spent 6 months fetal on a couch, in agony and nerve pain, suffered suicidal depression and lost 30 pounds without trying. I couldn't walk around the block without excruciating nerve pain in my feet. This came on suddenly, I was perfectly healthy for 41.5 years and then last year it ALL fell apart. Tons of specialists, each one shaking their head...The GI that did the endoscopy said I have had this forever, it was not recent. I went from perfectly healthy to dying in a month. And I may have been like you, if I was 39 and feeling healthy I may have also thought it can't be that bad, I can't do it, I can't give it up. I wish, just to give you a nudge, that you come and spend some time in my damaged body and see how radically your life can change. It is hell. I am learning how to live again and it is a daily struggle. Taking 10 years off your life may seem like an acceptable trade off but only if you are healthy until you die and the chances of that are unlikely.

Figuring this out before you are REALLY REALLY sick is a GIFT, not a curse. It is there whether you like it or not.

I am not trying to be harsh, I just want my experience to help someone. Maybe there is some reason that I got this in the most goddawful way...

I wish you all the best! You can do this.

hugs

ada

ps It may be helpful to see a dietician if you can, they may have some good advice

PPS There are lots of resources on the internet as well

Open Original Shared Link

PPS Many restaurants have gluten free pasta and are actually celiac friendly, you just need to do your research, call ahead...

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NewbieMarch2011 Newbie

Well, I called my husband when I was diagnosed last week. He was at work and the conversation was limited to a minute. I mentioned it again that night and he poo-pood me and I shut up. I mentioned it again when we ate with friends last Friday and he stated he didn't think it was a problem and I shouldn't worry about it. A couple of days later I asked him to come to my doctor's appointment and he agreed. I don't think he has put 2+2 together to realize it's the same doctor. I haven't mentioned it to him since.

Last night I picked up dinner. In the course of conversation, I mentioned this might be my last calzone (he complained about where I picked up food from and I stated that I wanted my favorite calzone because it might be my last). He asked why and I mentioned that I was seriously considering trying the gluten-free thing.

He got very angry. He said that if I was going to try it then he wanted to go to a nutritionist with me and tell them what junk I eat. I eat okay - not great - but okay. I am vegetarian and get my protein from eggs, cheese, tofu, quinoa and occasional protein bars or drinks. We both work full time so frankly, he only knows what I eat in the evenings. When I am feeling naseous, I eat very bland food (potatoes, rice) because that is all I can get down. He, on the other hand eats fast food quite often, lots of steak, fried foods, etc. I don't eat any of those things.

He went on to say I should be exercising. I acknowledge that's true. I do a bit of yoga here and there. But I also work full time, keep the house clean, landscape an acre with several thousand feet of flower beds. I exercised faithfully for 25 years until I hurt my neck (herniated disk, bone spur, arthritis) and developed fibromyalgia and other problems. Now I don't do so much. I'm also 50 years old and no longer care about impressing anyone in a bathing suit. I'm 5'5" - 145 pounds, which is not so bad. He is a foot taller and 275 pounds. He has never exercised a day in his life - not once, ever.

He said that I was going to get so sick if I try this diet (I couldn't explain to him that I'll get sick if I don't try it). He actually works with a guy who has celiac disease. He said that if the guy eats a bit of bread he is sick for days. I think he thinks that since I don't have any digestive symptoms I don't have a problem. I wouldn't be opposed to going to the nutritionist with him if he wants to - but that's not the point I'm making. He is so pissed off if I even try to discuss the subject with him at all. I would explain about the disease to him if I could - but as soon as I say the word he blows up.

I can't go through life with every meal with him being a fight. I hope he changes his mind after my doctor visit (which he will attend). Otherwise, it is clear that I cannot even start to try this until then, maybe, depending on how the doctor visit goes. Unless he gets on board - this is just not going to work.

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Jestgar Rising Star

.......this is not a relationship I would be willing to stay in without some serious change. My life is too short to be treated that way by anyone....

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cassP Contributor

u said u dont have any digestive issues but then u said you get nauseaus a lot??????

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