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I Can't Do This


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#1 NewbieMarch2011

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Posted 01 April 2011 - 08:11 AM

I just got diagnosed a couple of days ago. I was having some vomiting and my husband insisted I go to the doctor. They did an endoscopy and bloodwork. I haven't vomited for over 2 months now and my stomach has been fine. Then I get this call from my doctor and my whole life is supposed to change. If eating one crouton is just as bad as eating whatever I want - then I might as well eat whatever I want. I can't give up all of this stuff. I could try to cut back - but if that makes no difference then I might as well not even try. I am vegetarian and my husband already gets impatient with me when I have to get specific when ordering in restaurants. His first comment to me is that I will have to start eating meat - which I will not do. The thought that I can never enjoy a nice pasta or piece of bread when dining out is pretty overwhelming, especially when I have no symptoms. I truly wish I had just never answered the phone when my doctor called with the results. I really think I'm just going to ignore the whole thing. Is there anyone else out there on this forum who has made this decision?
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#2 JSegura226

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Posted 01 April 2011 - 08:36 AM

I just got diagnosed a couple of days ago. I was having some vomiting and my husband insisted I go to the doctor. They did an endoscopy and bloodwork. I haven't vomited for over 2 months now and my stomach has been fine. Then I get this call from my doctor and my whole life is supposed to change. If eating one crouton is just as bad as eating whatever I want - then I might as well eat whatever I want. I can't give up all of this stuff. I could try to cut back - but if that makes no difference then I might as well not even try. I am vegetarian and my husband already gets impatient with me when I have to get specific when ordering in restaurants. His first comment to me is that I will have to start eating meat - which I will not do. The thought that I can never enjoy a nice pasta or piece of bread when dining out is pretty overwhelming, especially when I have no symptoms. I truly wish I had just never answered the phone when my doctor called with the results. I really think I'm just going to ignore the whole thing. Is there anyone else out there on this forum who has made this decision?


I am really new to this whole thing too. From what I understand.. just because you do not have any symptoms currently, does not mean you are not doing damage to your body overtime by ingesting gluten. My grandmother is 64 and just now getting the grunt of her symptoms. They started in her late 50's and have progressed over the years due to her not cutting out gluten in her diet. In her situation she was misdiagnosed with IBS and fibromylgia and did not know of her celiac until a few months ago. Her GI also thinks she has had celiac most of her life even though she has been mostly symptom free for 50+ years.. This disease effects everyone differently.

I can tell you right now.. if I knew that I had celiac before my symptoms started..and they told me that eating dirt was the only way to stop/prevent them.. I would be gobbling up mud pies left and right.. You do not want to have to go through this..
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Stomach pains and nausea since birth-Doctors considered Bulimia, Anorexia, other Neurological problems
Insomnia as a child and Night Terrors from age 5-14
Dx with Scoliosis at age 6
Performance in School declined immensely from grades 4th-12th
Foggy memory, Lack of concentration, and Slowed physical development from ages 4-20
Dx with ADD at age 14-Ritalin prescribed-taken for only 2 months
Scoliosis Bar and fusion and Chiari 1 Malformation Surgery at Age 17
Dx Celiac April '11
Gluten,Soy,Milk,Corn,GMO free starting 3/28/11

#3 NewbieMarch2011

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Posted 01 April 2011 - 08:48 AM

So, forgive me - I'm new to this forum stuff - does the listing under your name apply to things that you are going through? When you say you are gluten free as of 3/28/11 - does that mean you were just diagnosed as well?
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#4 NewbieMarch2011

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Posted 01 April 2011 - 08:56 AM

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?
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#5 JSegura226

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Posted 01 April 2011 - 09:02 AM

So, forgive me - I'm new to this forum stuff - does the listing under your name apply to things that you are going through? When you say you are gluten free as of 3/28/11 - does that mean you were just diagnosed as well?


Yes, that is a listing of things that have been a possible result to my celiac disease. I was in the process of being diagnosed but could not stay on the gluten challenge because it was literally killing me. I lost almost 13 lbs in a month. 26 years of vitamin/nutrient malabsorption finally started to really take a toll on my body and things started shutting down. If it was not for my grandmother being diagnosed by a good doctor.. I probably still would not have put my finger on gluten being the problem.

If you search the forum a little more, you will see that many people were misdaignosed with fibromylgia, ibs, chrons among many other symptoms over the years.. Many of which went away on a gluten-free diet.
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Stomach pains and nausea since birth-Doctors considered Bulimia, Anorexia, other Neurological problems
Insomnia as a child and Night Terrors from age 5-14
Dx with Scoliosis at age 6
Performance in School declined immensely from grades 4th-12th
Foggy memory, Lack of concentration, and Slowed physical development from ages 4-20
Dx with ADD at age 14-Ritalin prescribed-taken for only 2 months
Scoliosis Bar and fusion and Chiari 1 Malformation Surgery at Age 17
Dx Celiac April '11
Gluten,Soy,Milk,Corn,GMO free starting 3/28/11

#6 sb2178

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Posted 01 April 2011 - 09:20 AM

Well, the problem is that you won't absorb nutrients and then you'll develop additional problems. As an example, I lost over 5% of my bone density in just over the year before I was diagnosed. That is a massive amount. Anemia or borderline anemia is also typical, and b-12 related neuropathy is too.

On the other hand, there are lots of good food options out there and you CAN be vegetarian. I mostly am, although I did eat some meat after I was first diagnosed due to an elimination diet.

Pasta: gluten free pastas (ancient harvest quinoa corn, brown rice, white rice, corn, polenta, risotto
Bread: buckwheat, rice, corn, crackers

Quick breads (muffins and such) are quite easy to make taste delicious. Crusty French bread, not so much, but there are good crackers out there. Desserts are still available, and often even better. Chocolate mousse, fruit sorbet, pudding, custard, almond and nut-based cookies and cakes, etc. I eat out vegetarian and gluten-free regularly. Now, if you said that you had never cooked a thing in your life, I'd be a little worried. Check out some gluten-free blogs (message me if you want some links), read some cookbooks and flag favorite recipes. In the meantime, Indian and Mexican food are generally good places to start.
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2/2010 Malabsorption becomes dramatically noticable
3/2010 Negative IgA EMA; negative IgA TTG
4/2010 Negative biopsy
5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)
5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

#7 Jestgar

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Posted 01 April 2011 - 09:27 AM

I really think I'm just going to ignore the whole thing.

It's a quality of life question. If you feel that being sick is a fair exchange for being able to grab some food product off a shelf, then you've made your choice. I prefer feeling well to letting food control me.
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#8 NewbieMarch2011

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Posted 01 April 2011 - 09:29 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.
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#9 Jestgar

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Posted 01 April 2011 - 09:33 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 -

If a piece of bread is worth fibromyalgia, then go for it. The only one who truly cares about you is you, and if this is what you feel is best for you, then who are we to change your mind?
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"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#10 katiekay

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Posted 01 April 2011 - 10:01 AM

hi,
I am a newbie too.
Hang in there. I have found that it is not really bad at all. Although for my family we don't get to go out to eat anyway due to money... but food is definitely good even if it is gluten free.
Thai restaurants are a great place to go because they use rice noodles anyway. Indian restaurants can be a little tricky because some of their meals are cooked in the same oven as the nan. For me that is the frustrating thing - the cross contamination thing - why can't it be that we just can't have food with gluten in it.
In a couple weeks I'll be traveling to Pheonix, Arizona for vacation. I posted a request on the restaurant forum of this site and someone responded back with a list of like 10-15 restaurants. I am so excited that there will be plenty of places to go to. I would advise that you at least give that a try. Post your city and state or a close by city and see if people can help you out with restaurants with gluten free options.
As far as food... I got really depressed one day going by a dunkin' donuts... I don't even eat there but the idea that I couldn't really upset me... so I went home and made my own doughnuts. They were good. Here is the cookbook I bought which has great baked goods. I've tried 4-5 recipes and my family has loved them.:
http://www.(Company Name Removed - They Spammed This Forum and are Banned)/You-Wont-Believe-Its-Gluten-Free/dp/1569242526
(I tried 2 of the entrees and didn't like them though so for me it seems strickly a baked good items book) Oh and have to mention there are recipes for fried chicken etc (breading).

AND the big thing to remember is that this is always your choice and in your control. You just have to plan it out more than you used to. And get into cooking at home to make those favorite bready items.
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#11 katiekay

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Posted 01 April 2011 - 10:05 AM

oh, you guys have been posting while I was writing my post so my post is a little behind. Sorry to read about italian restaurant... that is a hard one. You could make some dinner bread (gluten free) to bring with you. Usually italian restaurants have things other than pasta. BUT again this food thing is totally up to you. You mentioned the throwing up thing... which is hard to deal with. Good luck though in whatever your decision. I think everyone deals with temptation in life, if not food than something else. It's always your choice and no one here is going to try and force you. They just know that their systems feel better and are healing up without gluten.
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#12 Jill0711

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Posted 01 April 2011 - 10:06 AM

It must be very shocking to hear that diagnosis. Make sure that you are not making your decision in a moment of panic rather than really thinking it through. First, there are people who simply ignore the diagnosis and go on with their lives; however, know that your body is still being damaged in some way if you continue to consume gluten. You may not see the signs for months or years or even decades, but the damage will be accumulating. Second, there are people on here who have no symptoms at all and still avoid it. You have symptoms even if you are not connecting the dots. Fibro and thyroid disease can be brought on by consuming gluten. Obviously, you have to have the genetic component, but your body is telling you that it doesn't like it. Third, there are so many gluten-free products available these days that it is very manageable. You would be surprised at the restaurants that have a gluten-free menu. Bread is a weakness of mine so when I know that I will be going out to eat, I usually pack my own. Most restaurants are very happy to heat it up for me in a clean pan in the oven.

Ultimately, it is your decision, but just think it through. I encourage you to give the gluten-free diet a chance for a few months before deciding. Just pretend it is a regular diet. You may be surprised at the symptoms that are related and the ones you didn't even realize you had that will go away or improve. I will tell you from personal experience that your thyroid levels will improve on a gluten-free diet and become much more stable.

We are here to help by answering questions and giving you encouragement if you decide to try the diet. As far as your boyfriend goes, he will learn how to handle the difficult ordering process in restaurants. I find it helpful to call ahead of time during non-peak hours to explain my needs. That way I don't have to take the time in front of my friends to go through it all. Being vegetarian, salads are usually ok without croutons (or bring your own). Just watch out for the salad dressings as some of them contain gluten. I know that you feel like you can't do this. Trust me--we all feel the same way at diagnosis. You can do this and it becomes easier to everyday. You learn what you can eat, you find restaurants that you go to all the time where you know what is safe, and you meet some wonderful people who help you along the way to not only cope, but to thrive gluten-free. Is it easy? Not always. Do we sometimes get sad and mad? Definitely. Do all of us feel better without gluten? Absolutely. You can do it.
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#13 NewbieMarch2011

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Posted 01 April 2011 - 10:09 AM

My husband is pretty much all-american steak-and-potatoes, with an occasional trip to an Italian or Mexican restaurant. Indian or Thai is out - he also has a sensitive stomach. Can I have things made with corn tortillas at a Mexican restaurant? It will be really hard if I'm hungry when I get to the restaurant and everyone else is eating bread (which I love) - and I can't eat anything. It's the all-or-nothing thing that's freaking me out. Cutting back seems doable. 100% strict adherence is just so daunting.
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#14 Jill0711

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Posted 01 April 2011 - 10:34 AM

I understand your frustration and everyone has that moment where they freak out at never eating gluten again. I definitely went through that. If you can't wrap your mind around the all or nothing thing, then create a plan where you eliminate more and more until it is gone. Ideally you want to stop consuming it immediately, but it is better to take a month to get there than to give up on it entirely. Corn tortillas are usually ok; you do have to be careful with what you put in them (seasonings in particular). I have found that for us, we simply just eat out less. I didn't plan it, but it has just happened. Olive Garden has a gluten-free menu if you are seeking Italian and have one near you. PF Changs is also really wonderful. The biggest thing is for you not to be starving when you go. Always grab a piece of fruit or something else before you go. That bread will be much less tempting if you aren't starving. I just try to picture all gluten foods with a picture of poison on it and I remind myself that it hurts my body when I consume it. Those two things help keep me from cheating...and paying for it dearly. I always have food with me in case I get stuck somewhere or am running late. I always have a gluten-free stash of some kind on me at all times.
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#15 tarnalberry

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Posted 01 April 2011 - 11:16 AM

It's daunting because it's what you know. It's a habit. But, like any other habit, it can be changed, if you want to change it.

You certainly are not symptomless - the hashimoto's is strongly correlated with celiac disease and so are multiple miscarriages. "Stomach" problems (really, intestinal) are not the only symptoms from celiac disease by any stretch of the imagination. For some people, their fibro symptoms cleared almost completely when gluten free.

Yes, on average, untreated celiac takes 10 years off your life. It also diminishes your quality of life and increases the chance that you will die in a painful and expensive manner (cancer, in particular).

You *can* do this, if you choose to. You can choose not to lift your arm to a bread basket, choose not to pick up a piece of bread, and choose not to put it in your mouth. Those things are entirely under your control. Will it take practice to build the "strength" of your willpower? Sure. But most things worth doing take practice.

And do you have to live without good food? No. This diet eliminates FOUR things. The fact that our culture has this huge over reliance on these items - really, only one of them - is actually just a huge limiter in our culinary experiences.

Still want pasta? Fine - make a gluten free pasta. I use Tinkyada, but we all have our favorite brands. My husband thinks its just fine for my salmon pasta salad, and he generally doesn't really like pasta at all.

Still want "steak and potatoes"? Make steak and potatoes - both of those are gluten free. Steak, roasted potatoes (or sweet potato fries) and salad is a pretty common dinner for us. (And if you rely on croutons on your salad, it is time to get more inventive and WAY tastier.)

Still want to eat out? Find places that offer gluten free options. How easy this is depends on where you live, but it's doable.

If the choice to eat a piece of bread is worth (possibly) fibro pain, and a diminishing quality of life as you age, that's your choice. Like it is a smoker's choice to increase their risk of lung cancer, emphysema, and other "less serious" side effects if they feel that a cigarette is worth it. This is the same sort of decision. Yes, most of us think the decision is "obvious", but it is still your decision. You may be able to change your mind in the future and only have some irreversible effects (depends - neurologic damage can be irreversible), but that's a gamble you also have to choose.

As has been said, we're happy to help you figure out how to make the diet doable for you if you choose to do it.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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Bellevue, WA


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