Posted 19 August 2011 - 02:08 PM
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 ?
Posted 19 August 2011 - 02:29 PM
"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)
Posted 19 August 2011 - 02:53 PM
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.
Posted 19 August 2011 - 03:16 PM
I'll second that....
Quit hanging around with such losers for "friends" .
Posted 19 August 2011 - 03:30 PM
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!
Posted 19 August 2011 - 03:42 PM
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.
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?
Posted 19 August 2011 - 03:53 PM
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.
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.
Posted 19 August 2011 - 06:25 PM
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?
Posted 19 August 2011 - 06:42 PM
misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010
i'm down here in the well, looking back up at the hill
well, thank heavens i fell, i must look more like myself.
everyone is so kind, everyone looks like
a long lost friend of mine.... - 'up from under' - the wallflowers
have a nice day
Celiac.com - Celiac Disease Board Moderator
Posted 19 August 2011 - 06:52 PM
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.
When our lives are squeezed by pressure and pain, what comes out is what is inside.
Posted 19 August 2011 - 10:34 PM
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.
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.
Posted 20 August 2011 - 05:16 AM
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.
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.
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