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Having A Celiac Break Down


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30 replies to this topic

#1 valeriek

 
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Posted 19 June 2011 - 06:49 PM

I am not out for sympathy first of all. I am having a break down. I cant do this any longer. I made a gluten-free strawberry short cake and was crap. I eat 1 meal a day. And dinner is either pork chop, salmon, or hamburger patty. I want real food.
AND WHAT I DONT GET IS THE DR SAID I HAD THE WORST CASE HE HAD EVER SEEN 2 YEARS AGO. I DONT FEEL ANY BETTER!!!!

What would happen if i just said screw it and ate what i wanted? My husband has no sympathy for me at all. My friends and family dont get it so they just say eat what I want.
My mom was finish and always had something wrong with her stomach. She was never diagnosed. Now she has passed away.

Please give me ideas someone about what the worst that could happen if I ate normal . I have dreams of eating gluten all the time.

Help I cant cope any more.
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#2 kareng

 
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Posted 19 June 2011 - 06:59 PM

Valerie,

Are there other things you can't eat besides gluten? If not, there are lots of things to eat.

Even before I had to be gluten-free, sometimes a new recipe would turnout like crap. Usually my hub was too polite to say that, but he would say, "Let's not have this again" or " MAybe if you used less ----- or more -----".

We had a new dessert tonight for Father's Day. My teen boys said it was one of the best desserts ever. My 18 year old said, " it's like the perfect candy bar!" I am going tom post it tomorrow. This is just to show you there are yummy things.

Look at the " What's for dinner thread?". You can see that people are eating all kinds of good stuff. Some of those people have a lot of other food intolerances.

If you have been at this awhile, maybe just start over. Just eat some simple meat, fruit, veggies, rice, beans, etc.

You can do this.
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#3 lizard00

 
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Posted 19 June 2011 - 07:02 PM

We need to get together. I remember you from 2 years ago and I remember that you live close by.

Seriously.

Liz
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#4 love2travel

 
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Posted 19 June 2011 - 07:08 PM

I am not out for sympathy first of all. I am having a break down. I cant do this any longer. I made a gluten-free strawberry short cake and was crap. I eat 1 meal a day. And dinner is either pork chop, salmon, or hamburger patty. I want real food.
AND WHAT I DONT GET IS THE DR SAID I HAD THE WORST CASE HE HAD EVER SEEN 2 YEARS AGO. I DONT FEEL ANY BETTER!!!!

What would happen if i just said screw it and ate what i wanted? My husband has no sympathy for me at all. My friends and family dont get it so they just say eat what I want.
My mom was finish and always had something wrong with her stomach. She was never diagnosed. Now she has passed away.

Please give me ideas someone about what the worst that could happen if I ate normal . I have dreams of eating gluten all the time.

Help I cant cope any more.


You MUST do this for your sake - for your future. I do not know why you are not feeling better yet - perhaps it is another food intolerance? There are others on this forum who are more experienced with that than I. Are you taking supplements such as sublingual B12, B complex, D3 liquid gels, etc? They can help you absorb better so you feel better.

It must seem impossible without any real support. I cannot fathom how anguished you must feel. Is there any way you can take your husband to see your doctor or someone who will help him understand the seriousness of this? My heart feels sick for you. I wish you had the support you sorely need. Is there anyone like a pastor or counsellor you could talk to?

If you went back to eating gluten you could certainly shorten your life. I recently attended a talk by a leading celiac expert in Canada (gastroenterologist) who said that those undiagnosed (or eating gluten) have four times the mortality rate of others. That is huge. And one more word. CANCER. That is a big deterrant.

Please take it just one day at a time. Or even one meal at a time. For meal ideas look on the what's for dinner thread under the cooking/baking section. There are lots of absolutely tasty things you can make. I teach gluten-free cooking/baking classes so would be happy to help if I can. Many things are naturally gluten-free already. Meals and food can still be fun and very interesting. There are some pretty neat flours and such out there with which to experiment. If you need inspiration I can recommend some cookbooks - I have over 500.

You must hang in there. It can be done - it truly can. It is not easy, I admit it. Do you have anything you love to do to distract you? Maybe a lighthearted book or gardening or going for a walk? You must get your focus off this for a bit and do something else. You can and MUST do this!!! :)
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#5 RL2011

 
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Posted 19 June 2011 - 07:56 PM

I am not out for sympathy first of all. I am having a break down. I cant do this any longer. I made a gluten-free strawberry short cake and was crap. I eat 1 meal a day. And dinner is either pork chop, salmon, or hamburger patty. I want real food.
AND WHAT I DONT GET IS THE DR SAID I HAD THE WORST CASE HE HAD EVER SEEN 2 YEARS AGO. I DONT FEEL ANY BETTER!!!!

What would happen if i just said screw it and ate what i wanted? My husband has no sympathy for me at all. My friends and family dont get it so they just say eat what I want.
My mom was finish and always had something wrong with her stomach. She was never diagnosed. Now she has passed away.

Please give me ideas someone about what the worst that could happen if I ate normal . I have dreams of eating gluten all the time.

Help I cant cope any more.


Valerie,

First of all remember that you must find something to keep your mind focused on staying strong mentally. Do not dwell on any ignorant or negative feedback from either your husband, family or your friends. Do not let anyone dictate how you feel. It is hard enough dealing with the emotional issues resulting from celiac disease alone.

If you are gluten intolerant do not eat normal for any other ignorant person. The old adage, "ignorance is bliss" has another side... and it is "knowledge is a burden".

I will not apologize for coming down hard on your husband and if he has a problem with that then tell him to fight me not you.

Train your mind to be strong for yourself, for your kids, then work on training your husband and family.

Good luck!



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Richard

#6 domesticactivist

 
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Posted 19 June 2011 - 10:28 PM

I think you might feel better if you ate more than one meal a day. What are the reasons you only eat one meal?

When you say you want real food, what kind of things are you missing?

You say you haven't improved in 2 years, and that the dr said you were very bad off 2 years ago. You also mention your family is unsupportive. That brought a few thoughts to mind:

- Is your home gluten-free? If not, this could be a big part of your problem.
- Have you had your blood work redone? If not, you might want to do that. If so, what were the results?
- Have you considered trying a healing diet like GAPS or SCD? It could be that the damage your gut has from gluten in the past hasn't had a chance to heal, and other foods are causing you problems in the meantime.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#7 GFinDC

 
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Posted 20 June 2011 - 01:32 AM

...

Please give me ideas someone about what the worst that could happen if I ate normal . I have dreams of eating gluten all the time.

Help I cant cope any more.


Well, there was a poster a while back who went off the diet. She ended up going to the ER one night and they had to cut 2 feet of her intestine out and put her on a colostomy bag. She wasn't real happy about all that.

read post #37 by BackTalk in this thread.
Posted 21 March 2010 - 01:58 PM

Falling Off The Gluten-Free Wagon - Celiac.com
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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

#8 Diane-in-FL

 
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Posted 20 June 2011 - 06:09 AM

I feel so bad for you (and others on here) whose husbands and family are not supportive. It makes this journey a whole lot harder than it needs to be. I've read that for those who have really bad damage like you do, that the healing process can take 2 or 3 years. The other posters have given excellent advice on what to eat. I really hope things get better for you soon. :)
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#9 GlutenFreeManna

 
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Posted 20 June 2011 - 06:21 AM

I am not out for sympathy first of all. I am having a break down. I cant do this any longer. I made a gluten-free strawberry short cake and was crap. I eat 1 meal a day. And dinner is either pork chop, salmon, or hamburger patty. I want real food.


Why do you only eat one meal a day? Do you have other intolrances or allergies besides gluten? You said you didn't want sympathy so if you don't have any additional restriction except gluten you get NO sympathy from me for eating that way. If you DO have additional intolerance there are many on this board that have been there done that. I have multiple food restrictions (see my signature) and I still eat what I consider "real food" everyday. I can make lots of suggestions for food choices besides what you listed but I will wait until I hear whether you have other restrictions.

AND WHAT I DONT GET IS THE DR SAID I HAD THE WORST CASE HE HAD EVER SEEN 2 YEARS AGO. I DONT FEEL ANY BETTER!!!!


Have you had your testing redone to see if you are still getting gluten? If you are really only eating fish, meat or chicken everyday then that may be why you don't feel better. There are also so many other factors that could contribute to "not feeling better".

Are you taking multivitamins?

Is your house gluten-free?

Did you get new toaster, cookware, cutting boards, strainers, etc for dedicated gluten-free cooking?

Do you have a hobby or work in a job that could be contributing? (Bakery, pizza place, construction, art supplies, preschool teacher, etc)

Have you checked personal care items and other non-food items like soap?

Could you have an additional intolerance? Dairy and soy seem to be most common.

What would happen if i just said screw it and ate what i wanted? My husband has no sympathy for me at all. My friends and family dont get it so they just say eat what I want.
My mom was finish and always had something wrong with her stomach. She was never diagnosed. Now she has passed away.

Please give me ideas someone about what the worst that could happen if I ate normal . I have dreams of eating gluten all the time.

Help I cant cope any more.


Lets see.....
You could end up on the bathroom floor bleeding out the butt.

You could just be extremely sick and tired all the time until you catch somethign else due to the weakened immune system that lands you in the hospital or kills you. I got brochitis that turned into pneumonia and sent me to the hospital once after being glutened with a large amount.

You could start having worse symtpoms than what you currently have. I don't know what your current ones are but I had unexplained seizures as one of my symptoms. I was not able to drive or work because of them.

You could develop other autoimmune diseases such as RA, Lupus, Hashimotos...

You could could feel great again for a few months or years eating whatever you want until you develop intestinal cancer....
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#10 valeriek

 
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Posted 20 June 2011 - 09:45 AM

I think you might feel better if you ate more than one meal a day. What are the reasons you only eat one meal?

When you say you want real food, what kind of things are you missing?

You say you haven't improved in 2 years, and that the dr said you were very bad off 2 years ago. You also mention your family is unsupportive. That brought a few thoughts to mind:

- Is your home gluten-free? If not, this could be a big part of your problem.
- Have you had your blood work redone? If not, you might want to do that. If so, what were the results?
- Have you considered trying a healing diet like GAPS or SCD? It could be that the damage your gut has from gluten in the past hasn't had a chance to heal, and other foods are causing you problems in the meantime.




Hey there.
I had a biopsy and blood work done. What I meant was I didnt even know I this till vit. d was low. I dont feel any different is what I meant to say. Never runny poops, never any thing weird except naus. sometimes. Every thing in my house id gluten-free except my sons stuff. What healing diets are talking about? I want to do that. Do they really work? I only eat 1 meal because im tired of eating the same thing over and over.
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#11 kareng

 
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Posted 20 June 2011 - 10:04 AM

Hey there.
I had a biopsy and blood work done. What I meant was I didnt even know I this till vit. d was low. I dont feel any different is what I meant to say. Never runny poops, never any thing weird except naus. sometimes. Every thing in my house id gluten-free except my sons stuff. What healing diets are talking about? I want to do that. Do they really work? I only eat 1 meal because im tired of eating the same thing over and over.


But why don't you eat other things? There are lots of things to eat that are gluten free. Vegetables, fruit, beans, pasta sauce, rice, quinoa, Chex cereals, cheese, salsa, corn torillas, potatoes, chicken, beef, fish, salads, etc. LOok on the What's for dinner thread & see all the things people are eating. http://www.celiac.co...870#entry710130

Eating 1 limited meal a day will make you malnourished & you will feel bad.
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"We've waited 29 years for this and not even a Giant can stand in our way." - Mayor Sly James
 
 
 
 
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#12 valeriek

 
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Posted 20 June 2011 - 10:16 AM

Thanks every one.
Ok why I only eat 1 meal a day??? I am tired of eating the same crap. I want to go make a grilled cheese like normal people. When I said I dont feel any better I meant I dont feel any different. Nothing was wrong with me before. I would get occasional naus. But that is it. No symptoms. I had a endoscopy twice and blood work. I got it.

I weigh 107. I want to be back at 115. But im only 5'4. I have a tiny boned family. Finish genes I guess.

So here is what I eat per day.....

Dinner around 10 or 11 pm..---salmon and rice, or pork chop and can of pintos, or meat patty and can of baked beans. That is my rotation.
Then I eat a bowl of chex, doritos, candy bars and or chips with dip.
I do take nightly walks late.

ok so I am ready for help that I can really live with.

Thanks so much every one for understanding.
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#13 kareng

 
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Posted 20 June 2011 - 10:22 AM

Thanks every one.
Ok why I only eat 1 meal a day??? I am tired of eating the same crap. I want to go make a grilled cheese like normal people. When I said I dont feel any better I meant I dont feel any different. Nothing was wrong with me before. I would get occasional naus. But that is it. No symptoms. I had a endoscopy twice and blood work. I got it.

I weigh 107. I want to be back at 115. But im only 5'4. I have a tiny boned family. Finish genes I guess.

So here is what I eat per day.....

Dinner around 10 or 11 pm..---salmon and rice, or pork chop and can of pintos, or meat patty and can of baked beans. That is my rotation.
Then I eat a bowl of chex, doritos, candy bars and or chips with dip.
I do take nightly walks late.

ok so I am ready for help that I can really live with.

Thanks so much every one for understanding.



I still don't know why that is the only things you think you can eat? Look on the dinner thread like I suggested.

Here's what I ate yesterday:

gluten-free Rice Krispies
Left-over rice, corn, cheese, mild pepper casserole with added fresh tomatoes
Kettle corn
Dinner (whole family ate this):
Red potatoes cut into little pieces, tossed with olive oil & cooked on the grill wrapped in foil
Pork Chops cooked on grill - marinated in gluten-free worchestshire sauce, garlic & pepper
Salad - spinach, carrot, red pepper, feta with salad dressing
Cookie/candy bar cookie thingy
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LTES

 
"We've waited 29 years for this and not even a Giant can stand in our way." - Mayor Sly James
 
 
 
 
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#14 love2travel

 
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Posted 20 June 2011 - 10:32 AM

Can you have potatoes and dairy? If so, roast some garlic, puree it and put in mashed potatoes that include butter and cream (since you would like to gain a bit of weight!). Or simply roast potatoes that have been cut into chunks (or use new baby potatoes) with some fresh herbs and olive oil. You can make oven fries with potatoes or sweet potatoes and perhaps even a dip. Do you like hummus? Very easy to make. Today I am making a black garlic roasted red pepper dip for my falafel chips. Do you enjoy risotto? Tons of recipes for that including roasted butternut squash, fresh herbs, mushrooms, asparagus...I could go on and on but that could get tedious.

How about pork? Briefly sear a tenderloin or loin (you can brine in advance for added flavour - super simple to do), stick it in the oven and glaze with some tart jelly or reduced wine, etc. You can make yummy mushroom sauces for meat. Maybe some BBQ ribs? Very easy. Roast at low heat (300-325) for a few hours and slather with sauce. Maybe try pulled pork. Or how about grilling? If you have access to a grill you can grill tons of veg, mushrooms, skewers of veg or meat, fish, or even cheese. Halloumi or Provolone cheeses do not melt when directly grilled.

If you eat chicken perhaps try a stir fry or two with thick buckwheat noodles (ensuring they are gluten-free). Or you could easily slather on or stuff with pesto (very easy to make) or a sauce. :PFor something fun, try fish or chicken (or shrimp or scallops) en papillote. All that is taking a piece of parchment paper, throwing in some protein and veg and herbs, drizzle with a bit of citrus and/or oil and bake in oven). Or make rubs for meat, dry or wet, and roast or broil.

Like seafood? How about a jambalaya? Or seafood risotto? Or simply skewer on rosemary and brush with garlic oil or a sauce. You can quickly sear scallops and have them simply dressed with some reduced balsamic vinegar and serve with a pea or carrot (or whatever!) puree.

Do you like lamb? Grilled lamb chops that have been marinated in a simple rub of garlic, olive oil, fresh rosemary and thyme are delicious. Or if you do not have a grill, simply sear in cast iron pan and continue roasting in the oven. You can make an ultra fast mint sauce for lamb. Or maybe make lamb stew or lamb skewers you can readily wrap in bibb lettuce leaves and perhaps a yogurt mint sauce drizzled on top.

Fruit? Fresh strawberries with black pepper and balsamic. Or watermelon with feta, mint and balsamic. You can grill/roast pears, pineapple, etc. Or make a fruit salad with poppyseed dressing or poach.

Eggs? How about frittata? Scrambled with bacon and chives? Poached? Pasta - there are hundreds of lovely sauces including tomato, carbonara, alfredo, pesto...

gluten-free cookies, brownies and cakes are super easy and taste very good (yeast products are trickier).

I just thought of these things rather quickly but if you want menu ideas and suggestions let me know. That is what I do!!
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#15 love2travel

 
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Posted 20 June 2011 - 10:34 AM

Another thing I recommend is get inspired to cook! Go to your local grocery store or fresh market and look for things you have not cooked with before such as jicama, lemongrass, salsify - any interesting ingredient. Then research it and plan a meal around it.

Didn't even touch on ethnic dishes yet. That is another topic but you can have tons of Thai, Japanese, Chinese, French, Spanish, Middle Eastern, Indian, Mexican, Greek, Italian...dishes. TONS.
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.




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