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Ugh! People Just. Don't. Get. It.


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#1 zus888

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Posted 28 October 2011 - 11:24 AM

Actually had someone write on my wall that they don't believe in all or nothing and that you should do everything in moderation. That is, eating gluten in moderation should be fine. She also implied that there is a celiac DEBATE in that some are passionate in their belief that all gluten must be eliminated, but that she believes that everything in moderation is a good motto. Also said that medical science is a crazy thing and not everyone agrees on this. Did I miss a recent study because I was fairly certain that there is NO debate on this at all.

She WAS trying to be supportive because I posted that I was sick of this diet and ready to do a day or two long gluten binge-fest. I think this was her way of being supportive of that decision. But STILL! You can be supportive without using an argument that holds some truth! Damn.

Sorry just had to vent. I hate this diet.
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Suzanna

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#2 BeFree

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Posted 28 October 2011 - 11:58 AM

This is what I'm so afraid of--people not understanding. I'll be starting a new job soon and I'll have to tell all of my new co-workers that I can't eat gluten or dairy, can't really join them going out for lunch, can't join them in eating the birthday cake they bring to the office, etc. I don't want to start out my new job looking stand-offish, or like I'm being a hypochondriac, or like I'm some kind of "health-nut" that thinks they're better than everyone else, when I'm none of those things. I don't mind the diet really, but I do mind the feeling of being different from everyone else.

Plus...I do also believe in the "everything in moderation" philosophy. For MOST things in life--but not for this. If you have celiac, it will do harm to your body if you eat gluten. Keep yourself safe...don't let this friend talk you into doing something you may not really want to do. You've worked hard to get this far into your diet, and you should be congratulated for that! It's hard work!
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#3 ravenwoodglass

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Posted 28 October 2011 - 12:02 PM

No you didn't miss any study. She has perhaps met some folks who are 'just going to try that gluten free thing' and seen them grab a piece of cake. It does sound like she really doesn't understand what celiac is. I do agree with you she may have been trying to be supportive as she was repling to a vent of your frustration.
This is a great place to vent that kind of struggle because we understand what it is like. We know that even a little bit hurts and won't advise you otherwise. Sorry your having such a rough time right now and I hope things improve for you soon.
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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)

#4 kwylee

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Posted 28 October 2011 - 12:13 PM

I hate this diet.

I read your post and guessing "I hate this diet" is what's really going on here. I know you don't want me to trash your friend because you acknowledged yourself that she was only trying to be supportive as a result of your complaint. Truth is, you know the score. You know what celiac/gluten intolerant is and what it is not.

It's absolutely not fair that you have to watch what you eat or else you'll get sick. I totally get it. But messing up your stomach acid balance over innocuous comments of those who do not get it (and maybe never will), only hurts you in the long run. I think you're entitled to an occasional pity party, just hope you know when to turn the page and move on. Maybe you could educate your friend. She might really only want to help.

Sorry if this wasn't what you wanted to hear. You have a nice face and smile, you seem like a good person. There's so much more to life than wheat bread and pasta.
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K Wylee

Gluten Intolerant, Positive test, June 2010
Casein sensitivity, Positive test, June 2010
Reactive to soy, most processed foods & preservatives, June 2010

#5 Jestgar

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Posted 28 October 2011 - 12:13 PM

I agree, everything in moderation, including people who feel they have the right to dictate your life.

Figure out what food she hates the most and ask her how moderately she consumes it.
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#6 IrishHeart

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Posted 28 October 2011 - 02:00 PM

Suzanne,

Her argument does not "hold some truth" as you say. While "everything in moderation" may be true for some things in life (a little wine, a little chocolate :) ), it simply does not apply to EVERYTHING. I can destroy that weak "argument" in two seconds....Is a moderate amount of rat poison okay to eat? How about a moderate amount of cyanide?

Nope, I didn't think so. :rolleyes:

People who do not fully understand what happens to a person with Celiac disease when they ingest gluten often make such ignorant assertions. You can educate them and set them straight, thereby reinforcing for yourself WHY it would be very detrimental to your health to go on a gluten binge.

Hon, just exactly why ARE you so intent on doing this gluten binge anyway? To make yourself sick? What purpose would that serve? :blink:

I noticed that you have posted in another topic about how much you hate the diet, that you are angry when someone eats rolls around you and that you're going to tell your doctor to "take the diet and shove it" (I believe was your quote :lol: ) and that , in general, you are really unhappy. (Your words, not mine.)

We get it. We really do. And you can vent and have a pity party (hell, who hasn't had those?) but there comes a time to move on and get back to living. I agree with KWYLEE--maybe this is not what you want to hear, but it is time to make a decision.

Kiddo, this is not just a "diet". It's not like we have to eliminate cookies and bread because we need to lose weight. :rolleyes: That is "dieting".... This is nothing to screw around with.

You have an autoimmune disease that is potentially life-threatening and the one thing that controls it/puts it into remission is NO GLUTEN.

There is no such thing as "gluten lite" or gluten "in moderation".

Now, you have two choices:
you can take the time to educate your friends so they stop telling you inaccurate information and maybe it will help you get past how much you HATE this;
OR
you can keep fighting the reality that is your life now and continue to be unhappy.

Hon, there are ways to enjoy life that do not involve gluten flours/grains. It's just one food protein, for pete's sake. There are tons of options for baking and eating delicious gluten free foods, including rolls. Make some and eat up!

But first, you have to find a way to make peace with having celiac.

Until then, anger over what you are "missing" instead of what you have--is going to make you miserable and that is no way for a beautiful young woman--whom, as I recall has a sweet little family?---to live her life. And as I recall, don't you also have a liver condition as well? Well, honey, you should take good care of yourself then!

There are no guarantees in life, but this one thing is true---if you have celiac---ingesting gluten will cause MORE harm to you. Period.

I am not preaching to you, honest. And you can certainly ignore this or tell me to mind my own business, or whatever.... but honestly, I have suffered immeasurably from celiac and I am working to regain my mobility, my muscles, my brain, my hair, my impacted nerves, bones, joints and spinal column...... my life. Do I like having to give up gluten? NOT really, but I was so grateful to know WHY I was so sick, I am thrilled to give up one simple thing to get well. I HATE being the walking dead MORE. Giving up gluten is a tiny thing compared to what I have lost--and my husband has lost--in the last four nightmarish years we lived through, not knowing why I was slowly dying. I am not the only one. Many people on here have horror stories of loss--YEARS spent in gluten-induced hell.

I have total empathy and compassion for your diagnosis, as I share it, but I simply do not understand why anyone would want to harm themselves because of a "need" to have a wheat dinner roll. I struggle every single minute of every single day to get out of the horrific pain I am in from gluten and I cannot imagine purposefully ingesting it to make myself sick, thereby causing pain and sadness for myself and my family.

Time to make peace, dear girl--- and move FORWARD. :) Or not. Ultimately, it is your call.

Just my humble opinion, offered with support and empathy. Best wishes to you.
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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

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

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.
I. Win. bliss-smiley-emoticon.gif


#7 Coolclimates

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Posted 28 October 2011 - 03:46 PM

that would make me super angry, too. What the hell does she know about celiac disease anyway? It would be one thing if she actually KNEW a thing or 2 about the diet, but it sounds like she doesn't have a clue.
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#8 zus888

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Posted 28 October 2011 - 04:59 PM

IrishHeart, it is heartbreaking knowing the pain and suffering you've endured for years before coming to this lifesaving diagnosis. And I feel so horrible being so bitter about it when so many here are grateful for it.

I'll post what I said on FB after getting feedback from my friends regarding my original post, which merely stated how giddy I am at the thought of a gluten gluttony binge.

----

And that's part of my struggle. The rational side thinks it would be ridiculous to do anything to risk my health over a dinner roll, especially considering how much I'm fighting to stay healthy over a whole OTHER health issue. Obviously, I want to live, right? I'm doing pretty much everything I can to get myself in good shape, yet am willing to throw it all away for a dinner roll? It makes no sense.

Emotionally, I'm not handling this well at all. I really have had thoughts of cutting my arms with a sharp pointy object to bring about a physical pain strong enough to drown out the emotional pain of being in the same room as a dinner roll and having to face watching others eat it. Since that wasn't an option at the time, I also considered taking a number of pain killers to make me so high that I wouldn't even care if I was surrounded by a sea of dinner rolls. Somehow I managed through the meal, but not without tears and lots of violent uncontrollable thoughts racing through my head. I'm still feeling traumatized by the whole event. Do I want to go on living like that? OVER A DINNER ROLL??? WTF? Why it has so much power over me is beyond me. I don't WANT to be this way. I don't WANT to WANT something so much that I'd risk my life to have it. But, I do. If I ended up in the ER, I think I would actually say it was worth it. THAT is NOT an exaggeration. And I hate saying that. I hate how weak I am.

The rational side is fighting the emotional one, and it's not currently winning. Perhaps another type of drug is the answer. Perhaps I should just take some anti-depressants to numb myself. I don't know.

I do have an appt with the doc to discuss all of this. And, basically, to tell him where he can stick it. I have no plans for an endoscopy because doc does NOT want to do it to monitor. He says the risks (general anesthesia) don't outweigh the benefits. I plan to make him see otherwise. If I can just have PROOF that this diet is doing SOMETHING to help (i.e. better looking villi)... Maybe I just need something to prove it's been worth my while. I don't know.

---

So, that's my struggle. If I *could* just be happy with what I CAN eat, I wouldn't be in this situation. It's easy to say to just get on with life, but, in reality, it's not that simple. It's not like I WANT to live like this. I don't. I WANT to enjoy what I have. I WANT to be ok with this. I'd LOVE for ONE DAY to go by without thinking about eating a dinner roll, or any number of other things I can no longer have. Hell, it's gotten so bad that I am now fantasizing about a McDonald's cheeseburger. I have an obsessive side. A very strong obsessive side that I have little control over. And, things just are not getting better; they are getting worse.

If I'm visualizing cutting my arms or fantasizing about taking oxycodone just to numb my emotional pain, then there is something very wrong, and it needs to be addressed. I have a hard time going on anti depressants when the ONLY thing causing my depression is the limitations that have been placed on me. It's NOT a chemical imbalance - it's grief. And it's coming out in unhealthy ways. No amount of denial is helping me cope. I try to ignore it, but it seeps out of my overall outlook like a toxic ooze.

What it boils down to is this: which is worth the sacrifice - my physical health or my mental health?

I came a long way to be able to live my life with an incurable liver disease. I went through a 6 month depression before coming out of it deciding to die living my life instead of living my life waiting to die. But, this. This is more than I can handle on top of that other crap. Every day - multiple times a day - I am reminded of my precarious health and my limitations BECAUSE OF THIS NEW LIFESTYLE. I had managed to do a great job living in denial because I have no outward physical manifestations from my liver disease. But, now, denial isn't an option when every time I put something in my mouth, I have to think about what's in it, what it's touched, or the pathetic excuse of a replacement that it is.

I'm sorry I'm such a downer. I really try to stay away from here because I know I'm toxic right now and of no use to anyone. I have nothing positive to say about it.

I need a personality-altering drug, I guess...
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Suzanna

#9 sariesue

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Posted 28 October 2011 - 07:02 PM

IrishHeart, it is heartbreaking knowing the pain and suffering you've endured for years before coming to this lifesaving diagnosis. And I feel so horrible being so bitter about it when so many here are grateful for it.

I'll post what I said on FB after getting feedback from my friends regarding my original post, which merely stated how giddy I am at the thought of a gluten gluttony binge.

----

And that's part of my struggle. The rational side thinks it would be ridiculous to do anything to risk my health over a dinner roll, especially considering how much I'm fighting to stay healthy over a whole OTHER health issue. Obviously, I want to live, right? I'm doing pretty much everything I can to get myself in good shape, yet am willing to throw it all away for a dinner roll? It makes no sense.

Emotionally, I'm not handling this well at all. I really have had thoughts of cutting my arms with a sharp pointy object to bring about a physical pain strong enough to drown out the emotional pain of being in the same room as a dinner roll and having to face watching others eat it. Since that wasn't an option at the time, I also considered taking a number of pain killers to make me so high that I wouldn't even care if I was surrounded by a sea of dinner rolls. Somehow I managed through the meal, but not without tears and lots of violent uncontrollable thoughts racing through my head. I'm still feeling traumatized by the whole event. Do I want to go on living like that? OVER A DINNER ROLL??? WTF? Why it has so much power over me is beyond me. I don't WANT to be this way. I don't WANT to WANT something so much that I'd risk my life to have it. But, I do. If I ended up in the ER, I think I would actually say it was worth it. THAT is NOT an exaggeration. And I hate saying that. I hate how weak I am.

The rational side is fighting the emotional one, and it's not currently winning. Perhaps another type of drug is the answer. Perhaps I should just take some anti-depressants to numb myself. I don't know.

I do have an appt with the doc to discuss all of this. And, basically, to tell him where he can stick it. I have no plans for an endoscopy because doc does NOT want to do it to monitor. He says the risks (general anesthesia) don't outweigh the benefits. I plan to make him see otherwise. If I can just have PROOF that this diet is doing SOMETHING to help (i.e. better looking villi)... Maybe I just need something to prove it's been worth my while. I don't know.

---

So, that's my struggle. If I *could* just be happy with what I CAN eat, I wouldn't be in this situation. It's easy to say to just get on with life, but, in reality, it's not that simple. It's not like I WANT to live like this. I don't. I WANT to enjoy what I have. I WANT to be ok with this. I'd LOVE for ONE DAY to go by without thinking about eating a dinner roll, or any number of other things I can no longer have. Hell, it's gotten so bad that I am now fantasizing about a McDonald's cheeseburger. I have an obsessive side. A very strong obsessive side that I have little control over. And, things just are not getting better; they are getting worse.

If I'm visualizing cutting my arms or fantasizing about taking oxycodone just to numb my emotional pain, then there is something very wrong, and it needs to be addressed. I have a hard time going on anti depressants when the ONLY thing causing my depression is the limitations that have been placed on me. It's NOT a chemical imbalance - it's grief. And it's coming out in unhealthy ways. No amount of denial is helping me cope. I try to ignore it, but it seeps out of my overall outlook like a toxic ooze.

What it boils down to is this: which is worth the sacrifice - my physical health or my mental health?

I came a long way to be able to live my life with an incurable liver disease. I went through a 6 month depression before coming out of it deciding to die living my life instead of living my life waiting to die. But, this. This is more than I can handle on top of that other crap. Every day - multiple times a day - I am reminded of my precarious health and my limitations BECAUSE OF THIS NEW LIFESTYLE. I had managed to do a great job living in denial because I have no outward physical manifestations from my liver disease. But, now, denial isn't an option when every time I put something in my mouth, I have to think about what's in it, what it's touched, or the pathetic excuse of a replacement that it is.

I'm sorry I'm such a downer. I really try to stay away from here because I know I'm toxic right now and of no use to anyone. I have nothing positive to say about it.

I need a personality-altering drug, I guess...


This post screams I need help. Please go find a GOOD therapist, as soon as possible. Take this post if you need a starting point as it can be hard to jump into your problems with a complete stranger. Therapy has been proven to work very well with situational depression. If the first therapist you find isn't a good fit, find another. Therapists are worse than medical drs when it comes to finding a good one because people need different things from their therapist. So don't give up if the first one you find isn't perfect. But, please get help before you injure yourself. IF you do end up in the ER from self injury it will NOT be a pleasant experience, you will wait around forever, be treated poorly, probably put on a psych hold, medications are almost a definite as well and not just a simple anti depressant harder stuff like Xanax or Hadol since they both calm people down very quickly.
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#10 AVR1962

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Posted 28 October 2011 - 11:18 PM

Until a person lives in themselves, they can't understand. I hear the pressure you feel and how you want to be heard byt these "friends" who have no compassion for what you are dealing with but realize this is their perception but you do not have to own it. You have to do what is best for you and I can guarantee you that the long term effects of continuing to eat gluten will do some real serious damage. Many of us here are dealing with some very real symptoms of nerve damage which is much like having MS, that is not cool!

I had someone tell me that vitamins were a waste of money and that the only real way to get the proper nutrients was thru your diet. They are entitled to their opinion but I would be a case and a half without supplementing and there is no way for me to eat enough to get what my body needs.

These people just may have to eat their own words one day and then they will see. Don't harm yourself and if you have anymore thought like that seek help. When I first showed hard symptoms and felt I was losing my mind because my brain was a fry zone I sought out a counselor who helped me sort out all the emotional frustrations of dealing with something that was happening to my body that I had no way of understanding myself. Shje helped me alot. At times I felt she was the only one that understood until I found this group. You are not alone lady, hang in there!!
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Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#11 ravenwoodglass

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Posted 29 October 2011 - 02:45 AM

I'm sorry I'm such a downer. I really try to stay away from here because I know I'm toxic right now and of no use to anyone. I have nothing positive to say about it.

I need a personality-altering drug, I guess...


Please don't stay away because you feel like this. We do understand how you feel. I also would urge you strongly to get some help from a good therapist with this. Drugging yourself isn't going to help although a doctor may be able to find something that is safe for you without putting you into a fog.
If you are considering cutting please get yourself help NOW. If you can't do it for yourself do it for those who love you. I had a child that was a cutter and I can't possibly describe what it was like the day in the ER when I found out that was happening. The guilt over not being able to help someone you love who is hurting themselves is hard to describe and even harder to live with. If you are reluctant to get help for your own sake do it for those that love you. There is no shame in seeking help and many places will have a sliding fee scale if your insurance doesn't cover it or you don't have insurance. You have been dealing with these feelings for a long time now and they seem to be overrunning your life. You are too young and valuable to let the grief process take over and ruin your life. While many get through the grief of the diagnosis and the challenges fairly quickly and without professional support there are also many who have needed help to get through the grief process and come out onto the brighter side. Myself included.
  • 1
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)

#12 Britgirl

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Posted 29 October 2011 - 04:08 AM

(((hugs))) I know what you are going through, I really do. My health has been tipped on it's head since getting my diagnoses last month. I now have not one but two incurable diseases. I have been an emotional mess trying to adjust to this new lifestyle, but what really makes the difference is having a supportive, loving social circle. They may not understand everything about my illnesses, but they stand behind me and encourage me to move forward.

I've learned not to lament over things I'm missing, rather find alternatives that I like even better. Goodbye favorite cheesecake, so long favorite pizza joint :( Ultimately, I am doing this for my health, so I have to take a step back when temptation rears it's ugly head.

I strongly suggest as others have said that you visit a therapist ASAP. My family has a history of mental illness and dealing with it, especially in a hospital setting is no fun whatsoever.
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DX with Gluten Antibody Reactive 10/18/11
Lyme Disease, Hypothyroidism, Pre-Diabetic
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#13 IrishHeart

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Posted 29 October 2011 - 06:09 AM

Well, having battled serious depression myself (after years of multiple miscarriages and unsuccessful fertility treatments and a divorce) and then again in 2008, (my beloved Dad had died and I burst into burning nerve/joint pain and did not know why--and fell so ill & had to deal with this mystery THING that tried to kill me. Doctor after doctor, traditional and Naturopathic, our entire life savings --$30K spent in vain looking for an answer and relief from this searing pain--all along, it was gluten! ) I FIGURED IT out and I have some serious anger over what happened to me, so I can say that I ABSOLUTELY understand the feelings you are experiencing. I have found ways to channel that anger --use it for a better purpose--and to reclaim my life. I clung to my sanity because I KNEW in my heart there was a reason for why I was so ill.

BUT THERE IS a HUGE different between grief and depression.

Eventually, grief passes.

But when you say YOU HAVE NO CONTROL over obsessive feelings or this irrational thinking, that you desire to cut yourself or take a lot of pills, and that you feel you are "toxic" because you have nothing to offer...well, kiddo, your anguish speaks volumes.

YOU NEED TO TAKE BACK THE POWER!! You are in charge of your own life. You have a family that loves you and needs you.


You need to tell your husband you are feeling this bad and you need to see a therapist IMMEDIATELY. Do not wait any longer. Get help.

Do not assume grief is causing you to want to do harm to yourself....it is MORE than grief--- and depression can be caused by many things, such as an imbalance of seratonin, essential fatty acids, vitamin or minerals.

I have trouble tolerating medications, too---(I WISH I could just take pain meds or anti-depressants and be "all better"-- but I simply cannot) so I just found someone I trusted (a trained psychiatrist who happened to know a lot about food intolerances) and talked and talked until I was "done". I have some PTSD as a result of this ordeal and she helped me get past it. My husband has been a source of indescribable support and unconditional love.

Do I still have down days--YES!--I am in a lot of pain and I do not know when/if it will ever resolve. But I will not let it OWN me. Screw that! I have a life to live! AS DO YOU!

You need to talk about this with someone who can help you. You are dealing with so much--- and it WILL help you to find some ways to COPE. You cannot remain in the hole you are in, honey.

No one thinks you are a "downer"; we think you are suffering. We want you to feel better.
  • 1

"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

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

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.
I. Win. bliss-smiley-emoticon.gif


#14 alex11602

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Posted 29 October 2011 - 07:24 AM

I just wanted to add something about the self-harm with saying that it will not help anything feel better. With cutting there is one moment where the adrenaline makes things seem better, but that moment passes very quickly and self mutilation is addictive due to that release of adrenaline. In turn to keep feeling better you would have to keep cutting and even though the motivation for cutting yourself is not suicide at least 35% of those who self mutilate (pills count in this too) end up involuntarily committing suicide. I remember from your posts that you are married, but I am unsure if you have children and from personal experience I will tell you that it will destroy your family. It is so difficult for loved ones to understand why we would harm ourselves and eventually due to that not understanding things will become tense (in 99% of cases) or end up with you not having anyone (in 15% of cases) which makes everything worse. And if you have children it does effect them too, even if they never see you harm yourself and in 70% of cases the children will also grow up with extremely low self esteem and in about half of those cases the children will also end up self mutilating.

I am not just trying to throw statistics at you to make you feel guilty or anything like that, I am just aware that there are many different ways for a person to get past those feelings of harming themselves. For some it is the cold hard facts that help them overcome it, for others it could be having someone like a therapist or close family member to talk things over with and yet for others it could be a hobby that is picked up when the urge to mutilate hits.

Another thing to realize is that thoughts of self harm are not always related to chemical imbalances but it is a coping mechanism for stress. When you are able to find another outlet to release the stress the recurring urge to mutilate will pass.

I completely understand that the feelings are there and just keep in mind that it is a stress reaction and you need to find what will work for you to reduce that stress. For example...I cut myself for over 10 years before I was able to redirect the stress because things like going to a therapist or taking medication would make me handle stress worse. It was not until I started writing stories and doing research that I was able to step back and stop cutting on a regular basis. So for me when I am extremely stressed about something or upset about this lifestyle change I work on my book a little bit or look up recipes or I will do research on whatever subject comes to my mind. It has been over a year since I cut on a regular basis and while it used to be almost a daily occurance it has only happened once since I figured out what I needed to do to help myself.

I hope that you too are able to find a way to cope with stress that is not destructive.
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#15 kitgordon

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Posted 29 October 2011 - 08:14 AM

Suzanna, don't stay away because you are "no use to anyone" here. We hope WE can be of use to YOU while you are learning to cope. I echo what others have said - look for a good therapist. Also try meditation, exercise, yoga, hobbies - anything that brings you joy, relieves stress and helps take your mind away from the pain. And maybe learning to cook yourself yummy gluten-free foods would help you feel some power over your situation. I am so sorry you are in such a dark place. Hugs!
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