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I Can't Do This


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#61 GlutenFreeJess

 
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Posted 19 April 2011 - 05:49 PM

I was diagnosed in 2008, and I still struggle to remain 100% gluten free. I am also recovering from an eating disorder, so that definitely plays into my struggle to lay off the gluten. My hope is that one day I will indeed be able to be 100% gluten free because I *feel* better when I don't eat gluten, and I know that there are long term health consequences if someone who is Celiac continues to ingest gluten. I just wanted to post to offer you support. It's not an easy diagnosis to get, but something I have learned slowly but surely is that it's not an end-of-the-world diagnosis either. Hang in there (( Hugs ))
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~Jessica~
---------
Dx: Celiac Disease '08, Hashimotos Thyroiditis '08, Diabetes '07, TMJD '07, Fibromyalgia '08

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#62 Marz

 
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Posted 21 April 2011 - 11:45 AM

OMG - Pancakes! I make the best pancakes in the world. Not trying to boast, but I found the best recipe and use the best ingredients and anyone who has ever tried my pancakes agrees they are the best. Restaurant pancakes just cannot compare. I usually make chocolate chip pancakes - which are our favorite. If I go gluten-free, my pancakes are one of the things I will miss the most - and my husband is still going to want them. Making them and not eating any would be very hard.


Well they won't taste exactly the same with gluten-free flours, but believe me the toppings taste the same, and it's still pretty awesome! Actually, before I could only eat two or three pancakes before feeling sick - thought I just couldn't handle all that sugar. But now I can tuck into a lot, and no misery afterwards!

Well, you don't have the stomach symptoms, but yeah... must be hard without excruciating stomach pain to back up the diagnosis. But I'm 100% positive your fibro, and a lot of other issues will mysteriously get better/disappear while gluten free. I would try for a month - just set yourself a goal, and get a good gluten-free cookbook to have fun with, and get rid of the flour in your pantry! Stock up on fruit and nuts for snacks, and yoghurt, cheese, rice cakes and you won't even miss bread ;)

Besides, you can get pretty decent bread, just need to look around at the shops/health stores to see what the selection in your area is.

Good luck, hope you decide to give the diet a try!
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Feb 2010 - Start of continuous GIT problems and panic attacks
July 2010 - Blood and biopsy -ve, went gluten free after testing which completely relieved symptoms
July 2011 - 1 year gluten free, food intolerances (Chicken, eggs, olives, goat milk) gone!

2012 - Soy no longer a problem
*************************************************************
Gluten intolerant

#63 cap6

 
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Posted 21 April 2011 - 12:35 PM

It is hard to sit and watch others eat foods you love when you eat out. Eat first. If you are full it is much easier. Or take a container of gluten-free food with you. I briefly explain my gluten-free issue to the server & ask for an extra plate, scoop my food onto it and enjoy the evening. I never go out without taking something otherwise I feel like I am missing out.
It is very difficult at first. No one here will tell you different. I didn't believe it when i was told it gets easier in time but it does. One day I just realized that I was no longer stressing over food and that it had become a part of me.
When you focus on what you can't have (and we all have been there) instead of what you can have it's a no win situation. If they have pizza so do I, my own & I get the entire thing to myself. If they eat pasta so do I. I think it's easier at home if the entire household is gluten-free but that is also a personal opinion.
I look at it this way - I have always wanted to be special & different.... now I am!
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#64 krystynycole

 
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Posted 24 April 2011 - 04:18 AM

There are tons of places to eat out Italian! Do a search on this site for gluten free restaurants and you'd be surprised. One of my favorite places to eat out gluten-free is Italian! I eat gluten free pasta in my house and enjoy it all the time. Even my husband enjoys it.

I feel your pain of bread. I used to fill up on bread and barely touch my entrée at restaurants, but now I don't even touch it and it's okay. I was really upset at first, but after going gluten-free and then consuming it changed my perspective. Vomiting and pain just isn't worth it to me. But it's your choice...
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Gluten Free since November 2010 and feeling fantastic!

(Mis)diagnosis with IBS in 2004
MSG and caffeine free since 2001

#65 Derezzed

 
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Posted 24 April 2011 - 12:59 PM

I just found out recently how badly I react to gluten when I went on a 3 day gluten challenge. It really surprised me because a year a go I was really sick and I didn't think it was related to gluten but apparently it was. A lot of symptoms crept up on me and I didn't even notice they were there until I went back on gluten for a few days. I know it's hard being gluten free because I'm a serious junk food addict and there were times I'd crave and just eat gluten. So not happening now that I know how sick I get (If you want to know my symptoms just ask).

When you're eating out and your not sure if they have gluten free bring your own snack. Make it something really good so you enjoy it and if anyone asks? Just tell them you are a celiac and can't eat gluten because you will get really sick and damage your body.
Try to eat at resturants that have gluten free menus or can adapt they're current menu. If your husband is giving you trouble explain to him how bad gluten is for you. Or you can get your doctor to talk to him as well.
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#66 T.H.

 
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Posted 25 April 2011 - 08:09 AM

So sorry it's been so difficult, although I'd agree with many here - you have tons of symptoms, just not gut ones (although the nausea seems like gut to me, honestly). I don't have gut ones myself, except after going gluten free, I realized that if I get glutened multiple times in a row I'll get constipation. But that's it. My stomach NEVER hurts from gluten.

However, symptoms I've had that have gone away since going gluten free:
- depression
- carpal tunnel disappeared within a few months, when I've had it since I was in my 20's (almost 40 now).
- radiating nerve pain down my arms and legs and in my neck - this was attributed to two partially herniated discs...which are also a result of Celiac Disease. Every disc in my father's spine eventually bit the dust because of his undiagnosed celiac disease. He also developed spinal arthritis
- plantar fasciitis. I was told I would have to wear orthotics for the rest of my life, and now I walk around barefoot all day and don't have so much as a twinge of pain. I didn't develop a bone spur with this, but I was told it wasn't uncommon to have one.
- weight. When I went gluten free, my weight stabilized so that I was much thinner than before going gluten free.
- vertigo and dizziness (the only time I DO get nauseated that's a gluten reaction, and it's just from the vertigo)

I have a friend with fibromyalgia, and while going gluten free didn't cure that, the symptoms were significantly improved. She had to walk with a cane before she was 16 years old because of her fibro, and now that she avoids gluten, she can go on hikes over flat ground for a few miles. . Whenever she gets hit again with gluten, she's back to the cane for a few weeks, though.

Same issue with Hashimoto's. Two gals in my local celiac group also have Hashimoto's, and things have greatly improved since going gluten free (although I didn't discuss details, just a general discussion, really)

I can appreciate that the diet seems almost pointless at this point, especially when you feel like there's little to be gained and a lot of added stress to your life, considering your husband's reaction. But there are a lot of things that gluten affects that have nothing to do with the gut, other than the fact that it keeps nutrients from getting to the rest of the body so it can function better. And while not eating gluten may definitely make your life more peaceful with your husband? It's going to be a much shorter life.

My family has 4 diagnosed celiacs right now, and many more are getting tested, because all of us who have the same symptoms died much younger than the ones who didn't. It's been studied in the general population as well - researchers had frozen blood from the 50's, tested it, and went back to find the people who tested positive. Much higher mortality rate among those who had tested positive (but were never diagnosed, so stayed on gluten).

I am truly sorry that your husband is unsupportive. And very sorry that he shows you such a lack of respect for your opinions and your health that he won't even listen.

I guess I'd ask just one thing: does your husband tend to act this way when he's frightened for you, or when he can't understand something, or just when you do something that he doesn't think is the 'right way' to do things?

Perhaps knowing why he acts this way might help with finding an approach to make sure you can get well, and he can, well, suck it up, considering it's not his body or his health.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#67 oceangirl

 
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Posted 18 May 2011 - 03:25 PM

Clearly this must be a dizzyingly difficult decision for anyone who is not ridiculously sensitive to gluten and who does not react in about 26 different and equally horrid ways to gluten ingestion.

I am AFRAID of gluten because of how it hurts; but that is my experience. After 35 years of various diagnoses, none of which satisfactorily helped me, it took getting deathly ill before the 5th in a line of Gastros suggested a Celiac panel and, voila! I have taken gluten happily out of my diet in return for no pain, embarrassment and the multitude of symptoms that crippled me for the 2 years before final diagnosis.

Tarnalberry is right on; if you'd rather stay where you were, you are lucky in my opinion, that that choice is even a remote option. For most of us, we were so ill that the inconvenience (and healthiness) of a gluten free diet seems small change when our quality of life had been so diminished.

Like I say to the students with emotional disabilities I work with as a teacher every day: is it HARD for you to build the muscle to cope effectively with your ADHD, anxiety, depression or rage? Yes. Is it not possible? Absolutely not.

good luck with whatever you choose.

lisa
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#68 txplowgirl

 
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Posted 18 May 2011 - 06:25 PM

I'd like to know how the original poster is doing and if her husband ever understood her needs.
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Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free


#69 rgarton

 
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Posted 19 May 2011 - 01:18 AM

I only got diagnosed a couple of months ago and feel that frustration but ignoring it will make you worse over time. I became severly anemic, almost needing a blood transfusion. I am also a vegetarian and am coping fine now. I have iron tablets to boost my iron. And going out isn't always a problem, tell your husband to suck it up and be supportive! He was the one who sent you to the doctors in the first place! And I am sure he wont want you in a worse condition, hair falling out, losing weight, severe stomach cramps, nausea, sleeping all the time just because you didnt want to be a hassle. It will be hard at first but there is so many new products you can eat now that are delicious and taste even better than the normal glutened stuff, pasta for example! Always call the place you want to eat out before you go and check that the chef knows you are coming and you need it not to even be cross contaminated etc, most chefs are really understanding and sometimes even like the challenge :)
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Lifes not waiting for the storm to pass, its learning to dance in the rain...

#70 a1956chill

 
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Posted 19 May 2011 - 01:31 AM

I'd like to know how the original poster is doing and if her husband ever understood her needs.

Yes ,to the OP , how are you doing??
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#71 Dee777

 
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Posted 19 May 2011 - 05:56 AM

Yes ,to the OP , how are you doing??


I, too, am concerned about the OP and how she is doing. My thoughts are with her every day.

Dee
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