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I'm So Bitter And Sick Of It


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#16 Pie Lover

 
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Posted 11 September 2011 - 09:03 AM

Why the f*** can't someone develop an immune suppressant drug so we can treat ourselves once in awhile, or at least not go out of our mind with worry if we suspect we might have eaten, touched, or breathed something by mistake :-(
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#17 GlutenFreeManna

 
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Posted 11 September 2011 - 10:13 AM

Zus, you are not alone. I've considered suicide.


Please, please get some help if you are thinking this. This board is a great place to rant and rave but don't let it be your only source of therapy. :(
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A simple meal with love is better than a feast where there is hatred. Proverbs 15:17 (CEV)

#18 zus888

 
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Posted 11 September 2011 - 10:47 AM

^WSS!

I'm so sorry that you are having an even more rough time than I am. I hope things will change once you start to feel better. I know that I have had suicidal-ish thoughts when I got myself accidentally glutened. It can really do a number on you - both mentally and physically. :(

I wish I had more positive things to say about it, but I'm obviously NOT the person to tell you how great the diet is! Regardless of how sucky it is, there ARE worse things (not that this consoles me much). Ah, eff it, I'll just shut up now because I'm not saying anything remotely helpful!

Just...
Hugs!
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Suzanna

#19 Takala

 
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Posted 11 September 2011 - 12:25 PM

Why the f*** can't someone develop an immune suppressant drug so we can treat ourselves once in awhile, or at least not go out of our mind with worry if we suspect we might have eaten, touched, or breathed something by mistake :-(



The immune - suppressing drugs that they have developed so far have proven to be extremely dangerous, because you need to have a healthy immune system to keep you from developing cancer. And they are extremely expensive and have other side effects, which means you'd be vulnerable to getting very sick if exposed to large crowds of people during cold/flu season. Your immune system is trying to protect you from something that you are not designed to eat. Better to put your efforts into safeguarding our entire food supply from cross contamination, and trying to get the FDA to pass better and not worse regulations that give industry a pass to import bad "gluten free" foods made of wheat starch, than trying to destroy your entire body's defense systems.
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#20 love2travel

 
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Posted 11 September 2011 - 12:43 PM

Please, please get some help if you are thinking this. This board is a great place to rant and rave but don't let it be your only source of therapy. :(


I ao agree. Something this serious is far out of our scope here. We can support you and pray for you but we are ill equipped (I speak for myself).
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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.

#21 ravenwoodglass

 
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Posted 11 September 2011 - 12:52 PM

Why the f*** can't someone develop an immune suppressant drug so we can treat ourselves once in awhile, or at least not go out of our mind with worry if we suspect we might have eaten, touched, or breathed something by mistake :-(


Are you recently diagnosed? Depression is not unusual for us prediagnosis and some of us go through withdrawl for a bit after going gluten free which can make it worse. If you are suicidal do get some help with that. I do admit that thought crossed my mind more than once prediagnosis but fortunately I have children and pets who needed me. Those feelings do come back when I get glutened but I now know they will be shortlived. Getting some therapy helped a great deal to get me to understand that for me it was part of the gluten issue and that the feelings will pass. It isn't a sign of weakness to ask for help, it is a sign of strength. Please do ask for help if you need it. Many towns and cities have hot lines you can call as a first step.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#22 Skylark

 
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Posted 11 September 2011 - 02:27 PM

Why the f*** can't someone develop an immune suppressant drug so we can treat ourselves once in awhile, or at least not go out of our mind with worry if we suspect we might have eaten, touched, or breathed something by mistake :-(

They are! There is an enzyme preparation in clinical trials, plus a vaccine that just passed phase 1. (The enzyme is NOT the useless "gluten defense" DPP IV preparation by the way.) http://www.alvinepharma.com/ is the company working on the enzymes. The company working on the vaccine is ImmusanT in Cambridge.
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#23 jesimae

 
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Posted 11 September 2011 - 09:54 PM

Yes. I am very angry. I hate the inconvenience, the texture of most gluten free products, that I'm starving, the effect this illness has on my family, the tendency to blame every symptom on celiac, the questions people ask, the nightmares I have about eating pizza on purpose because I'm sick of the diet, and most of all, the lack of support of my husband.

I was relieved when I got my diagnosis. Something I could control by diet sounded wonderful. After all, at the time, I couldn't eat more than a teaspoon of anything at a time. Then the reality started to sink in...

I'm doing better with managing my anger since I met the owner of our gluten free bakery. Thank god for her!

I have good days and bad days, and I'm still sick. But at least I can eat something, and I'm not vomiting everything up anymore.

One day at a time...
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Jessica
Dx: Celiac Disease, Epilepsy
Meds: Depakote, Celexa, Prilosec, Levsin, Zofran, Meclizine

#24 jesimae

 
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Posted 11 September 2011 - 09:56 PM

Oh and suicide crosses my mind a lot, but I shake it off and press on. I don't want to die at my own hands.
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Jessica
Dx: Celiac Disease, Epilepsy
Meds: Depakote, Celexa, Prilosec, Levsin, Zofran, Meclizine

#25 aeraen

 
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Posted 12 September 2011 - 12:21 PM

My heart breaks for everyone here who is feeling (or had felt) such severe depression due to their Celiac.

I just found out while visiting family in California that a distant cousin had recently been diagnosed. The first thing I thought of was contacting her to let her know that it wasn't as bad as it may at first seem, and that she can probably eat about 80% of what she is used to, and adapt maybe another 10%.

Having been gluten-free for about 3 years now, my husband and I have developed so many gluten free recipes that are part of our menu reportoire, that we don't even notice it anymore. In fact, I had dinner guests a few weeks ago who mentioned that it didn't even dawn on them that dinner was gluten-free until long after it was over... and then only because the subject came up.

There are inconveniences, and even some social issues (I hate appearing "fussy" when eating with other people or at restaurants), but the benefits of feeling healthy for the first time in my life outweigh the inconveniences. In fact, when I think of a "last meal" scenario, I usually end up wondering if having those Pillsbury biscuits would really be worth spending my last few minutes on Earth sitting on the toilet. :lol:
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#26 Goof

 
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Posted 12 September 2011 - 12:36 PM

I think you and I have been gluten-free for the same amount of time. I just hit 6 months last week. The stages of grief are absolutely true! When I first read that, I laughed a bit, and didn't take that part of going gluten-free seriously. But I went through all 5 stages of grief, including the anger. I have also made some mistakes along the way, been glutened, and been angry about being glutened. BUT you will get through this, I can assure you. Let yourself go through the grief stages. It's ok!!!! You're going through a massive lifestyle change, and it's natural for it not to be easy. Just keep hanging in there!
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#27 Sarah Alli

 
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Posted 15 September 2011 - 03:34 PM

I don't really know why someone would miss gluten. I bake and everything I've made tastes as good or better (I love the almondy flavor Pamela's has) as gluteny things. I've made banana bread, oatmeal muffins, coconut cupcakes, cheesecake, chocolate chip cookies, snickerdoodles, on and on. All gluten free, and nobody can tell the difference. I have recipes for all these if you're interested.
I don't especially care for bread, so you've got me there. I eat Udi's occasionally but if I lived alone I probably wouldn't bother- it's mostly for my pb&j-loving sweetie.
In fact (and maybe this isn't what you want to hear) I love being gluten free. I do. I had to make changes in my life, totally, but most of them were changes I wanted to make anyway but put off. More fruits and vegetables in my diet. No more icky over-processed, bleached, god-only-knows-what-else carbs. Nothing fried. More organics, making stuff from scratch instead of buying things full of preservatives and carcinogens. Much less eating out (we save so much money). More than all of those things, really, is that I appreciate what being gluten free has taught me: namely, how to cook and really love food. I've morphed into a foodie- what once was a picky bland eater now dwells longer each time in the spice aisle and grows her own herbs. I've churned ice cream and made peanut butter. I spend lazy afternoons simmering chicken stock and I dream of canning home-grown delights and maybe someday owning my own bakery. I have the energy, at long last, to do the things I want to do- being gluten free did all of this for me.
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Sick and tired of being sick and tired.

#28 love2travel

 
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Posted 15 September 2011 - 03:49 PM

I don't really know why someone would miss gluten.

I am a foodie and as such miss gluten like crazy! When you are as passionate about food as I am, you naturally miss it. The best food (and top quality ingredients) is a gigantic part of my life. I have eaten in some of the top restaurants on the planet so when you have had the ultimate you never forget it. You are right - it is very simple to do a lot of great gluten-free baking that can be superior to things containing gluten but that applies to quick breads, cookies, cakes, brownies, muffins, cupcakes, etc. and not yeast breads, phyllo and puff pastry, bagels, English muffins, choux pastry, and so on. I miss the aromas, texture and structure in addition to flavour. The act of kneading dough for bread or buns is (was) an integral part of the experience to me. Now those are the things I miss because they just cannot be replicated whereas the other stuff can. Yes, I admit I am a bit serious about food and am a food snob. There - I said it! :P
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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.

#29 zus888

 
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Posted 15 September 2011 - 05:05 PM

Man, I miss bread. I miss bread something fierce. And, that's the rub. If I had a day to binge, I would first go to Golden Corral and get salad and their dinner rolls. Mostly, the dinner rolls. That would be my meal: soft, buttery dinner rolls that practically melt in your mouth. Really, above all else, THAT is what I think about. BREAD. Yeasty yummy bread. Warm and soft, and chewy. Then, I'd probably have a pizza with a thick crust. Not sure what I'd have for dessert, but I wouldn't waste my time on something that could be decently replicated. The other thing I miss (but not yet) are my holiday cookies. I'm pretty sure that I'm not going to be able to replicate one of them, which makes me terribly sad.
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Suzanna

#30 sa1937

 
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Posted 16 September 2011 - 03:15 AM

Man, I miss bread. I miss bread something fierce. And, that's the rub. If I had a day to binge, I would first go to Golden Corral and get salad and their dinner rolls. Mostly, the dinner rolls. That would be my meal: soft, buttery dinner rolls that practically melt in your mouth. Really, above all else, THAT is what I think about. BREAD. Yeasty yummy bread. Warm and soft, and chewy. Then, I'd probably have a pizza with a thick crust. Not sure what I'd have for dessert, but I wouldn't waste my time on something that could be decently replicated. The other thing I miss (but not yet) are my holiday cookies. I'm pretty sure that I'm not going to be able to replicate one of them, which makes me terribly sad.

I hear ya, Suzanna. I think a lot of us miss our old gluteny bread...and that seems to be difficult to replicate, try as we may. I'm not sure I really recall exactly what it tastes like as it's been a long while. Have you tried making gluten-free pizza yet...that is one thing I've gotten pretty good at. The cookies will probably be easier than bread and come the holiday season, I have a feeling you'll find a lot of recipes here on the forum.
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Sylvia
Positive Celiac Blood Panel - Dec., 2009
Endoscopy with Positive Biopsy - April 9, 2010
Gluten Free - April 9, 2010




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