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Struggling :(


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37 replies to this topic

#1 tennisman

 
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Posted 19 August 2011 - 02:08 PM

I had been celiac for 8 and a half years and it never bothered me much I just got on with it . But lately I can't deal with it . I hate the gluten free diet it's destroying my head For the1st time I am struggling badly :( I'm bored of celiac disease I have lots of extra health problems caused most probably by being celiac , I hate it . I drink a lot of alcohol to feel happy , i'm depressed , anxious , angry , frustrated , I don't know what to do ?

I have had friend's recently who don't have celiac disease but tried gluten free food tell me gluten free food is disgusting and it's not a serious disease and it's not bad at all etc I even had one friend who put beer on my food on purpose to try and gluten me :( It angers me so much . I sometimes wish I could pass celiac disease on too some people.

I just don't know what I can do to start enjoying life again and stop letting celiac disease ruining everything for me it's in my brain 24/7 I can't stop it :(

Any advice please ? :)
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Diagnosed with Coeliac disease in 2003

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#2 ravenwoodglass

 
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Posted 19 August 2011 - 02:29 PM

Could you try some counseling? It sounds like you have a lot going on that isn't good and having someone to talk about it all with might help. The gluten free lifestyle isn't always easy and it doesn't sound like some of your 'freinds' are helping any. While drinking may seem like it is helping while you are doing it in the long run it can harm more than help. You need to find a different way of coping or you risk making yourself an alcoholic.
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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)

#3 Takala

 
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Posted 19 August 2011 - 02:43 PM

Quit hanging around with such losers for "friends" .
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#4 areyoufreakingceliac?

 
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Posted 19 August 2011 - 02:53 PM

Hi there,

Listen, it's not easy living the gluten-free lifestyle and I think its ok for us to have a little pity party every once in a while. It sounds like it's getting to you though. I agree with raven, you should talk to someone. Maybe quit drinking for a couple weeks, it isn't helping with the sadness and it might help you clear your head a bit. Keep your chin up, it's going to be ok. Oh and as far as the person who tried to poison you goes? Never speak to them again! Sorry you are having a rough time. This too shall pass.
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#5 captaincrab55

 
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Posted 19 August 2011 - 03:16 PM

Quit hanging around with such losers for "friends" .

I'll second that....
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I'm a New Man Without GLUTEN!

#6 oceangirl

 
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Posted 19 August 2011 - 03:30 PM

Perhaps some counseling would be your best route right now; be sure you give it a chance and then be discerning in terms of getting a good "match". (It can take SOME trial and error to find a counselor who's right for you.)

I am a super sensitive celiac who has lived gluten (AND soy, and corn and egg and nightshade and legume and dairy...blah, blah, blah...) free for several years before being able to put most foods (NOT gluten) back in my diet and who also feels strongly that, while this disease CAN be inconvenient and occasionally a freaking pain in the butt, it is not cancer- which is what I was sure I had when very sick- or a host of other diseases which one cannot really mitigate- hence, I try to be thankful that it's one where what I do makes a difference. It can take a while to come to this point of view, of course, and I do realize that some people's travails with celiac seem to be more far-reaching than others but, after 35 years sick and undiagnosed, I was happy to learn I could make some changes and feel better.

On the other hand, occasional venting can be helpful, too!
Hope you get some support and feel better very soon!

lisa
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#7 tcmom

 
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Posted 19 August 2011 - 03:42 PM

I am sorry you are feeling down in the dumps. I am recently diagnosed so we are on opposites ends but I am looking forward to the gluten free diet.

Maybe you could start learning to cook some awesome food for your friends. What can be less boring then grilled steaks with some spices and a side of baked potatoes? I made baby back ribs last night with Ken Davis BBQ. Salmon? Grilled Chicken? I am not really thinking of making the pre-made gluten-free food part of my diet. I am thinking of more of a fresh food diet. For snacks there's nuts, hard boiled eggs and Cheetos's (not fresh food but... nothing boring about Cheetos's!!!)

I agree giving up drinking for a month or 2 might help get you out of your funk, it can be a major depressive. If you are using it to make yourself feel better, it's not going to work.

Good luck and hope you feel better.
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#8 Katrala

 
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Posted 19 August 2011 - 03:44 PM

I'll second that....


I'll third it.

Friends may not always be as supportive as you wish, but they certainly don't try to harm.

Would they purposefully add sugar to a diabetic's food?
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Positive Celiac (Blood & Biopsy) - April 2011
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#9 Poppi

 
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Posted 19 August 2011 - 03:53 PM

I'll add another voice to that call for new friends.

Even one good friend would be better than a whole bunch of "friends" who don't respect you.

My advice to you in no specific order would be:

1. Counselling to deal with both the depression surrounding your celiac and the drinking.

2. Possibly treatment for the alcohol abuse, if you are drinking a lot because it's the only thing that makes you happy then you have a problem. This piece of advice comes from 8 1/2 years of sobriety. Life without drugs and alcohol is great. I did it and you can too.

3. New friends. It's hard to make new friends but perhaps a Celiac support group, a sports club, dance/language/art/fitness classes at the rec centre would be a good place to start.

4. Find ways to make yourself happy that don't involve food or booze. Hobbies are therapeutic and satisfying. I knit, spin, kayak, read, garden, take care of my chickens and bake.

5. Make a plan. Get online and get on the phone and find restaurants in your area that either have gluten free menus or have confirmed with you online that they can come up with gluten free foods. It's nice to walk into a restaurant with friends and be able to order a good meal.

6. Find at least one supportive person in your life and lean on them. Whether it's your wife, child, parent, grandparent, friend, neighbour, counselor... everyone needs someone who really understands them.

Good luck, we're all behind you. Hope things get better soon.
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Sara

Busy mom to 3 great kids (4, 8 and 18)

Gluten free since April 6, 2011 ~ Also sensitive to coconut, coffee and food dyes

Joint pain, mouth sores, back and neck pain, migraines, stomach pain, chronic fatigue, ADD and depression are all gone.
Wishing I had been diagnosed before celiac robbed me of the cartilage in my toes and the 3 babies we lost to miscarriages.


#10 rosetapper23

 
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Posted 19 August 2011 - 06:25 PM

Tennisman,

Where do you live? I think you need an intervention! If you're nearby, I'm willing to come by and discuss how to make your life happy...or at least bearable. Eating Gluten free can be wonderful! People who say gluten-free food is disgusting haven't eaten a great, home-cooked, gluten-free meal. Processed foods don't need to be eaten at all--whether they are gluten free or contain wheat.

So....how can we help you?
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#11 notme!

 
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Posted 19 August 2011 - 06:42 PM

(((hugs))) it's rough sometimes! it's ok to come on here and vent - nobody understands like we do, trust me. but if you need to get help to get over this bump in the road then get somebody to counsel you. NOT your "friends" - jeez... who the krap would do that... :mad:
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just as i was getting my affairs in order to die of malnutrition...
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#12 love2travel

 
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Posted 19 August 2011 - 06:52 PM

Your description of your "friends" is frightening. I cannot fathom the absurdity of their trying to force you to consume gluten! That is NOT normal.

Others have offered excellent advice. I echo the notion that gluten-free food can be absolutely amazing. Many of the best dishes one can enjoy are naturally gluten free, anyway. It is true that there are some products out there that are absolutely deplorable. Do not feel that is all that is available! This is an entirely new opportunity to take care of yourself physically, mentally, spiritually, etc. It sure would help if you had support, though. Do NOT give up hope.
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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.

#13 eatmeat4good

 
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Posted 19 August 2011 - 10:34 PM

If you read you will realize there are thousands of people giving up gluten and grains for health reasons and they are empowered by their decisions. Maybe if you looked at it as a personal decision instead of a disease it might help. You could think of it as Paleo eaters do as an empowering personal choice instead of constantly thinking of it as Celiac disease that it is destroying your life. Lot's of people eat as if they are Celiac because they choose to. There are Carnivores, Paleo's, Cave Men, Low Carb, No Carb, who mainly eat meat and vegetables by choice. Granted you would have to watch cross contamination and they do not. But I think it is very empowering to read that some people are beginning to realize that a healthy diet isn't what we used to think it was. Dangerous Grains...indeed. I personally like to read Marks Daily Apple.com. I'm not perfectly paleo...but I do like to think I will get there someday soon.

I am not rcommending the Paleo/Cave man diet so much as I am recommending taking control of the personal choice to eat gluten free. Drop the alcohol, you need some good friends and a new commitment to yourself.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
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#14 kellynolan82

 
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Posted 19 August 2011 - 11:03 PM

I'll second that....


I would have to agree too. That is just cruel. At least whoever did it could have offered you $1K-10K. Then you may have been in a position to 'gluten' yourself for their entertainment. ;)

All the best though. I, thankfully, have really understanding friends who I'm sure would never do such a thing. :angry:
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#15 Bubba's Mom

 
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Posted 20 August 2011 - 05:16 AM

I think a lot of people that have a chronic disease or condition suffer with a bit of depression? It's also normal to greive the loss of some foods or activities...BUT it sounds like you self medicating with alcohol? That's not good!
I wonder if the "friend" who poured gluten on your food was "under the influence" or just an XXX? A person like that is not your friend!
You could start a new hobby..cooking fresh and wonderful foods. Maybe take a cooking class? Look for a celiac support group?
Some of the gluten-free versions of prepared foods are awful..so don't use them! Make your own. :D
It would be a good idea to seek some counseling or see your Dr about the depression...and we are here if you have questions, answers, or need to vent.
Good luck!
(((hugs)))
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