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I Can't Do This


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#16 Gemini

 
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Posted 01 April 2011 - 11:28 AM

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.


Can I ask why someone would become a vegetarian and then eat a lousy diet? Grilled cheese, pasta, bread....these are all crappy carb loaded foods that aren't good to eat on a regular basis anyway. I guess if you decide that your health really doesn't matter, then go ahead and eat whatever you want.

You say you will not eat meat, no way, yet you don't have the fortitude to go gluten-free to prevent early death? I understand your shock and frustration but I don't understand your denial and the inability to eat for good health. I thought people went vegetarian for health reasons, aside from not wanting to eat animal products, but what you are eating will kill or disable you in the not too distant future. I hope you really give this a lot of thought and make the right decision. Going gluten-free is not the end of the world and, if you like to cook, there is a lot of good eating out there.
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#17 NewbieMarch2011

 
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Posted 01 April 2011 - 11:56 AM

You've given me some good info and some helpful info for organizing my thoughts. Yes, it is like a smoker making the decision to smoke despite the knowledge of long-term ill effects. And I guess I can try some baby steps to get closer to the goal and see how it goes. That's not quite as scary. Part of my apprehension is that my husband is already not very tolerant of my vegetarian diet. Adding the gluten-free thing to it will just make it harder. It's good to know that some mainstream restaurants, like Olive Garden, have a gluten-free menu. He would never eat at a health-food-type restaurant.

I can tell that some of you are disgusted with my attitude, but I've had lots of health issues over the years and have never had to cope with a doctor telling me I can never, ever, do something. Even smokers are told that cutting back is a helpful step if elimination isn't possible. I'm far from a health nut and I have no desire to live to be old. I just don't want to be crippled and in pain. If you told me that I'd suffer no ill effects - just a 10-year shortened life-span it would still be a no-brainer for me. No kids to impact and I don't think my husband will live to be very old.


On a separate note, health had absolutely nothing to do with my decision to become vegetarian. I find meat to be repulsive and our factory-farming practices reprehensible. Not trying to preach to anyone else - and my husband eats meat and I cook it for him - but for me, I just can't do it.
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#18 Jestgar

 
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Posted 01 April 2011 - 01:00 PM

I'm far from a health nut and I have no desire to live to be old. I just don't want to be crippled and in pain.

Sadly, this is the most likely outcome. You don't have a shortened lifespan, it just becomes more miserable.
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#19 Debbie B in MD

 
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Posted 01 April 2011 - 01:49 PM

Well, I don't have any symptoms that I know of from the celiac - but it's another diagnosis on a long list of ailments - some of which are listed as being related. Hashimoto's thyroid disease, fibromyalgia, lots of female problems, multiple miscarriages & much more.

When your doctor says - you can never eat a speck of these foods ever again - am I the only person out there that just said - No? Has anyone else out there just decided to ignore it?

Blood tests confirm the thyroid. I am no longer trying to have children. The fibromyalgia is irrefutable. I have been living with these things for years and am pretty used to them. Will the gluten-free diet get rid of these things - I doubt it. With no stomach symptoms - I would rather enjoy life. Even if you were to tell me that my life would be shortened by a decade - I would still rather enjoy the time that I have. I am the only one that thinks this way?


I was diagnosed with fibromyalgis just last September. I went gluten free in January of this year. 3 days later I started to feel better. I am off of my meds. Your list of other illnesses is all related. These others will improve with a new lifestyle of healing eating. Try it for a while, just a couple of weeks and see what happens. You will prevent further damage if you stay gluten free. Yes, it is frustrating, infuriating, and many other things, but it will help you heal.
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#20 Gemini

 
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Posted 01 April 2011 - 01:56 PM

You've given me some good info and some helpful info for organizing my thoughts. Yes, it is like a smoker making the decision to smoke despite the knowledge of long-term ill effects. And I guess I can try some baby steps to get closer to the goal and see how it goes. That's not quite as scary. Part of my apprehension is that my husband is already not very tolerant of my vegetarian diet. Adding the gluten-free thing to it will just make it harder. It's good to know that some mainstream restaurants, like Olive Garden, have a gluten-free menu. He would never eat at a health-food-type restaurant.

I can tell that some of you are disgusted with my attitude, but I've had lots of health issues over the years and have never had to cope with a doctor telling me I can never, ever, do something. Even smokers are told that cutting back is a helpful step if elimination isn't possible. I'm far from a health nut and I have no desire to live to be old. I just don't want to be crippled and in pain. If you told me that I'd suffer no ill effects - just a 10-year shortened life-span it would still be a no-brainer for me. No kids to impact and I don't think my husband will live to be very old.


On a separate note, health had absolutely nothing to do with my decision to become vegetarian. I find meat to be repulsive and our factory-farming practices reprehensible. Not trying to preach to anyone else - and my husband eats meat and I cook it for him - but for me, I just can't do it.



OK....now that you have clarified how you feel, I can relate to that. FYI....I have no desire to be 90 either. It's overrated, most elderly people that reach hyper-age are not living independently and most of their peers are dead, which can leave them feeling very isolated. Not true for everyone but for a very large number.

I do not follow a strict gluten-free diet to increase my years on this planet but to achieve a healthy life, free from agony which gluten was causing me, while I am here. When it gets to the point where you cannot work or even leave your house, then life is no longer worth living. That's how it was for me. After going gluten-free, that all turned around. I do go out to eat occasionally and eat very well at restaurants. Depending on where you live, you can too. You may have to eat a bit differently than you are used to but you would be surprised at how many gluten filled things can be made gluten-free and very tasty.

Do you eat chicken or fish? You don't need to eat meat if you have either of these 2. It may be very hard to eat both vegetarian and gluten-free but I am sure there are some here who do and can help you out with that.

As for your husband, he needs to get on board and not be self-centered about this. I don't like to preach to anyone about their marriage BUT a husband is supposed to be supportive and not intolerant of your medical needs. If problems develop because you have to eat and live gluten-free, that will be more problematic than the diet and something you have to work out. Do not let anyone dictate to you how you should eat to stay healthy. His restaurant needs come second to your dietary needs.

Do not despair...there are many here to help you and you'll be comfortable with this before you know it. You are entitled to some freak-out moments though! ;)
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#21 GFinDC

 
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Posted 01 April 2011 - 02:41 PM

Just so you know, some people have a "gluten withdrawal" period after they stop gluten. They crave gluten foods during that time or have other symptoms of withdrawal. That doesn't happen to everyone though. I just don't want you to be surprised if you happen to be one of those people affected.

One of the issues celiac disease causes mal-absorption of nutrients due to damage to the small intestine. That can lead to cravings also, as your body wants to get those nutrients to maintain it's cells. Some people get extra hungry after going gluten-free as their bodies start to heal and need more nutrition than usual.

Going gluten-free is a learning process. You will learn to eat different foods and think about different foods as snacks. There are lots of us here who have done it and it isn't impossible at all. Once you learn a new way of eating you will probably enjoy it or at least not find it a big burden.

There is a recipe section on the forum with tons of ideas. You can also search for "snack idea" or breakfast idea" threads. Every year someone seems to post a long list of gluten-free Halloween candy for some reason.

There is a restaraunt rating program called GFRAP that may help you find good gluten-free capable restaraunts. There are also celiac support groups in many areas that have meetings and share ideas and info.

http://www.glutenfreerestaurants.org/

Personally I don't think vegetarian is a good way to go, since many vegetarians eat a lot of soy. Soy is not good for people IMHO. I like eating dead animals myself (well done always). But to each his/her own. I ate vegetarian for 5 years due to my ex-wife's beliefs. No more though.

Here is an article on conditions associated with celiac disease. You might see some of yours listed there.

http://www.celiac.co...-and-Disorders/

Damage to your body doesn't get less over time. You already have symptoms and other conditions seeming to appear. They won't go away or get less if you keep eating gluten. More likely they will get worse and more could pop up. It's a downhill slope. You may be very surprised by how your health changes after being gluten-free for a few months. Don't be surprised if it does take 6 months or more to get feeling better though. People have varying recovery times just like we have varying symptoms.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#22 mushroom

 
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Posted 01 April 2011 - 02:48 PM

My first realization that I needed to eat gluten free (what prompted me to do it) was crippling rheumatoid arthritis in my early 60's. Believe me, you do not want that.
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Neroli


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#23 Jestgar

 
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Posted 01 April 2011 - 02:57 PM

My first realization that I needed to eat gluten free (what prompted me to do it) was crippling rheumatoid arthritis in my early 60's. Believe me, you do not want that.

Gads. Nor the knees that are self destructing, nor the peripheral neuropathy.
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"But then, in all honesty, if scientists don't play god, who will?"
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#24 tarnalberry

 
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Posted 01 April 2011 - 04:21 PM

It sounds like you are letting your husband hold your good health hostage. If he wants to put his desire for certain foods over your health... well, that's not very loving of him.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
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#25 ladymiss

 
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Posted 01 April 2011 - 06:26 PM

newbie-

i can understand your logic from where you are standing today. it is incredibly shocking to hear you have to make a dramatic change without any dramatic symptoms. and like all of us, we have the right to choose what we do with our bodies.

i think the encouraging comments here are great and food for thought (sorry for the pun).

i just wanted to say, like many here, i thought i was dying prior to gluten free. from that place, i was certain that i wanted more days to live! to enjoy with my family and loved ones and see the mystery of life continue to unfold. coming from that place, it was an easy commitment to make- that i would get better (over time) and have more days.

if you continue to eat gluten, you could find yourself wishing you would have guarded your health more.

don't mean to lecture- just wanted to illustrate another vantage point. good luck with all you are going through.
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Lactose Intolerant 2004, Gluten Intolerant 2010
Negative blood test for Celiac 2011, but incomplete testing....
All recent: Soy, casein and egg sensitive. Peanut and Shellfish allergy.
Still learning about what all this means....


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#26 Strawberry_Jam

 
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Posted 01 April 2011 - 08:07 PM

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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gluten-free 25 Feb 2011
soy-free 30 March 2011

dairy-free 30 August 2011 (roughly)

25 yrs old
diagnosed Celiac through biopsy and blood test (WAY positive) as of 25 Feb 2011


#27 Brigit

 
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Posted 01 April 2011 - 09:09 PM

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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#28 fattycat

 
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Posted 02 April 2011 - 03:02 AM

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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#29 IrishHeart

 
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Posted 02 April 2011 - 07:44 AM

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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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

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Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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#30 cap6

 
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Posted 02 April 2011 - 08:47 PM

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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