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Hard To Believe What Ive Become


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12 replies to this topic

#1 jasonD2

 
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Posted 14 July 2011 - 02:31 PM

i think back on how i used to be so normal and how i used to feel so normal and what ive turned into.

I can recall a time where people would say "hey lets go get dinner!" and i would be all over it..didnt matter where we ate just as long as we were out. the food was always so delicious and i always felt so satisfied after meals

Now im this nervous, obsessive finicky eater. everytime i go out i have 6 different pills wrapped up in a piece of aluminum foil or tissue in my pocket. i always order my food and then excuse myself to go to the rest room to pop the pills (these are enzymes for gluten, general digestion, probiotics, HCL and lactaid). i then return to the table and pray that i wont get indigestion from taking all the enzymes on an empty stomach and that my food comes quickly. after i eat i pay attention to every thing i feel in my body...do my legs tingle? any bloating? etc. if there is a reaction it could ruin my whole evening..i start questioning was it gluten? something else? will the possible cc cause any problems? do i have celiac or gluten intolerance? is it ok if i get some cc? how will i feel tomorrow?

this viscous thought process takes place every time i go out, but it never prevents me from going out. I still refuse to eat at home all the time or bring food into a restaurant..if i do that then whats the point of anything anymore?

There is also a whole thought process i go thru when friends want to eat out. i ask myself if i should eat before i go and then just say im not hungry? i call the restaurants and have been known to pull over on highways so i can look up menus and figure out if there is anything i eat.

anyway, its just hard to believe how different my life is and although ive been gluten free for almost 4 yrs and am always super careful It still gets me down.

I just started dating a woman again and up to this point things have been casual and ive been able to avoid dealing with food discussions but eventually it has to come up. i still recall the look on my ex's face when i told her and how throughout our relationship the whole thing just seemed like a huge inconvenience for her and how horrible and abusive she was to me sometimes.

anyway, as you all can see im spending much less time on here but i still feel the occasional need to vent. hope everyone is doing well :)
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Endoscopy & blood panel all negative 12/09 after being strict w/ gluten free diet

As of 8/09 - Candida Overgrowth, C.difficile overgrowth, elevated fecal anti-gliadin, elevated putrefactive SCFA's

Developed severe lactose intolerance, IBS and food sensitivities in 02 after contracting Giardia from a river in Oregon

Had negative celiac blood work in 02

Elevated stool anti-gliadin Ab (21 with 10 being cutoff for normal) - 2008

Positive for DQ8- 2008

Tested high positive for egg, dairy, soy, ginger, mustard - 2008

Lactulose/Mannitol (leaky gut) test indicated slight intestinal permeability

Improved with gluten free diet but still have spastic constipation

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#2 loneferret

 
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Posted 14 July 2011 - 04:11 PM

I hear ya... guess I'm feeling something similar, losing the normality, the night outs. Got my biopsy results just 8 days ago, and I'm already going crazy. The prospect of no longer being able to eat out etc etc etc.

Well I'm happy you stuck with the diet so long. I got a feeling I won't be as lucky
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#3 bartfull

 
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Posted 14 July 2011 - 05:19 PM

I used to be married to a man who lost a leg in a motorcycle accident. He had a prosthesis, but he always had trouble with his stump, and every step he took caused him pain. But he still waterskied, he still played softball, he still did just about everything he used to do. He said it wasn't a handicap, just an inconvenience.

I am trying to look at Celiac that way. (And it sure beats losing a leg!) It's INCONVENIENT having to always worry about what I put in my mouth. It's inconvenient to go out with "normal" friends when food is going to be part of our activities. Heck, for this girl who never liked cooking, it is VERY inconvenient to have to cook all of my own food.

But I'd rather do away with ONE of life's pleasures in order to preserve the rest. I'd rather put up with the inconvenience of cooking than to put up with the pain and fatigue and brain fog.

You just need to wake up tomorrow acknowledging that you feel good, knowing that your health is more important than anything else. Then, with that new attitude, keep in mind that your friends want to see you healthy too. The new woman in your life probably has a few of her own "inconveniences" too. You won't mind putting up with hers. right? Well, if she's a decent person, I'm sure she won't mind yours either.

Keep your chin up and feel proud of yourself! A lot of people couldn't do what we are doing. And don't ever forget, it is all worth it. I wish you all the best.
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#4 Takala

 
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Posted 15 July 2011 - 12:26 AM

You're evolving, Jason. You walk thru a world full of people slinging sauces and are so far successfully dodging most of them. You have a tough list of foods to be avoided compared to most of us, and you're coping successfully.

I ate this really amazing restaurant meal last week successfully, this place has a gluten-free menu and the waitstaff is caring, but it had a sauce on it, (it was about the 4th time we'd eaten there) and I'm still suspicious of the sauce, even though this is the best gluten-free sauce I think I've had, and would be in the top 5 sauces of any type ever, still as I am dipping into it, I am wondering if anything this good is going to end up not being such a great idea later. There have been a few chain restaurants I can't bear to go back to, because I've had such reactions from the stuff from years ago.
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#5 WhenDee

 
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Posted 15 July 2011 - 07:56 AM

I noticed the lactaid, and noticed the "leaky gut" thing in your signature, and I am going to ask if you've thought of going dairy free.

Celiac's is caused by a immune reaction to a PROTEIN. My daughter had a reaction to cow's milk as a baby - it was not to the lactose, but rather to a protein in it. Lactose-free didn't help her (we tried that first).

I was thrilled to think I could go back on dairy after being gluten free for a few months, and it didn't give me any stomach problems - but it did (apparently) cause me to break out in acne. That is NOT a lactose reaction! That is another immune problem. So no more dairy for me, it seems.

To me it sounds like you still have a problem you haven't sorted out yet. Whether it's dairy or something else.

How I've dealt with eating out is that I figure out what I can eat at every restaurant. My husband loves Chili's, for example. I can have the salmon, or I can have the house salad with no cheese & no croutons and the house vinaigrette. I don't even have to look at the menu - I decide ahead of time if I'm in a fish mood or not. I do this with every restaurant. When in doubt I have a salad with oil & vinegar dressing.

We already know our options are limited. It's much better to know ahead of time & not torture yourself with the thought of that cheeseburger, or worry about what is in that dipping sauce.

The biggest difference now is that instead of eating out being a treat, a chance to splurge, it's the time when we eat more carefully, and home is where we splurge and have safe treats. It's just a reversal.

Also, when I feel really badly, I do a week on my old elimination diet to clean my system. Rice & raw veg and fruit (no high-acid foods like citrus or tomatoes). It never fails. If you get this all figured out, you should be able to eat, even though it's restricted, without fear or constant problems. :(
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#6 dilettantesteph

 
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Posted 16 July 2011 - 06:40 AM

How about learning how to cook well land have people over to your place for meals? If you cook with naturally gluten free foods the costs aren't any higher.
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#7 NorthernElf

 
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Posted 16 July 2011 - 07:28 AM

I agree with most of the posts here - Bartfull, you nailed it. It does require adaptation.

I have zero tolerance to gluten and rarely eat out, but I have also had to greatly limit dairy and soy. Occasionally I have hard cheese and I have a little half & half in my coffee..that's pretty much it. I tried gluten-free cereal with soy milk and I just can't do it.

I meet friends for coffee, or wine. ;) I was just away for a holiday and I ate two breakfasts out - ordered a couple of hard boiled eggs and a fruit plate (fruit plates are a gyp in restaurants!). Then I ate more after away from the restaurant. I ate gluten free suppers at Joes Crab Shack and Red Robins... We stay in a hotel & the first thing we do is find a grocery store & a styrofoam cooler and stock up, usually just eating suppers out. The internet is a wonderful tool to find gluten-free places to eat, though you still have to quiz the wait staff. Oddly enough, I tend to lose a little weight on holidays - we stayed near Disneyland and the Target had little gluten-free food (yogurt, sliced meat, tuna, fruit & veg)....for carbs I ate crackers I brought and Tostitos! However, I had a great holiday. When I come home I eat all the things I missed ! We've bbq'd, made sushi, baked chicken, etc....

Yeah, I agree it sucks but this whole celiac thing has definitely changed my relationship with food. Food is a source of nutrition & energy...and enjoyment...but if one is stuck with few options, it simply becomes a necessity and the enjoyment factor may not be so big (such as the lunch of an apple, gluten-free crackers, and a tin of tuna)....but it's really only the odd meal or so that becomes a make do one - we can adapt !

And yes, I have brought food into restaurants when dining with other folks. So far, no one in the restaurant has said anything and of course the folks I am with just know me & dont' care. Hey, if I'm with several other paying patrons, having a drink or coffee or whatever, well...deal with it.
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#8 Salax

 
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Posted 16 July 2011 - 10:10 PM

It is a struggle isn't it? But "anything worth doing, is worth doing right." I get "freak outs" as I call them when going out to eat still even after 2 years gluten free and I probably will forever. BUT the one thing my hubby tells me is that if, IF I get glutened, it will pass. Yes it sucks and it's horrible, but it does pass and at that point you have to give yourself credit for trying and doing the very best you can not get glutened, but if you do, it will pass.

I don't understand why you don't just take your supplements at the table? I wouldn't be so concerned with everyone thinks. If they can't love you as you are with whatever is going on in your life, then they aren't worth any effort on your part. Don't be so hard on yourself. :)

Sending positive energy your way!!
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Salax
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Celiac Disease - Gluten Free since Feb 2009,
Cow Milk &  Corn free - June 2012,
Gall Bladder Failure - Removed July 2009,
Colitis, Hashimotos Disease, & Diverticulitis

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
( )_( )
(='.'=)
(")_(") Eat your vegetables!


#9 India

 
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Posted 17 July 2011 - 04:10 AM

Other people have given great advice and I'm sure more will contribute. I just have a couple of points to offer.

The first is about the pills. If they bother you on an empty stomach, then I'd suggest also carrying a small snack to eat a few minutes beforehand. As you already have GI issues, there's no point upsetting your stomach, even if it reduces your appetite for dinner a little. It also seems to bother you to carry the pills in foil/tissue - so, why not find a more practical way to carry them? Drugs stores sell different options for this. Or you could find a more inconspicuous way, such as a nice tin or coin purse - might as well do it in style!

A physical therapist once gave me a great piece of advice to help me manage my pain condition, which is that hypervigilance almost never helps. Worrying about every symptom - actual or possible, relevant or irrelevant - causes your body further stress and ruins the moment you're having now. Try not to overthink things - just make sure you have ways to deal with things that might happen and try to focus on to enjoying your evening and your friends.

Rereading your post, I do have a final thought - maybe you can see these issues as a way to help you narrow down the dating pool. If a woman can't understand or tolerate your food/health issues, then it doesn't bode well for a long-term relationship and she's probably not worth the effort!

Hope this helps x
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Self diagnosed but confirmed by biopsy
Gluten free Jan 2010
MSG free Jan 2010
Corn free Apr 2010
Soy free Jun 2010
Following a FODMAPS plan

Also have RSI, widespread myofascial pain and hypermobility problems

#10 annegirl

 
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Posted 17 July 2011 - 12:50 PM

It is a struggle isn't it? But "anything worth doing, is worth doing right." I get "freak outs" as I call them when going out to eat still even after 2 years gluten free and I probably will forever. BUT the one thing my hubby tells me is that if, IF I get glutened, it will pass. Yes it sucks and it's horrible, but it does pass and at that point you have to give yourself credit for trying and doing the very best you can not get glutened, but if you do, it will pass.


Wow, good point. Thank you so much for sharing!I will definitely keep that in mind for future outings. :) What a great way to look at it.
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Gluten, Dairy, Soy, Corn, Coffee, Caffeine, Pork Freeeeeee

So if the Son sets you free, you will be free indeed.

#11 Marilyn R

 
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Posted 17 July 2011 - 03:38 PM

this viscous thought process takes place every time i go out, but it never prevents me from going out. I still refuse to eat at home all the time or bring food into a restaurant..if i do that then whats the point of anything anymore?

I'm happy to report that there is life after not going out anymore! And life is good! :D
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#12 Strawberry_Jam

 
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Posted 17 July 2011 - 08:47 PM

I just take my pills at the table when the food arrives. I carry them in a little plastic medicine case with three compartments that I got when I ordered a small box of Digest Gold a long time ago. What is there to be embarrassed about? Everyone takes pills sometimes, and everyone will understand if you need to take some before you eat. If anybody doesn't, that person has the problem, not you.
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gluten-free 25 Feb 2011
soy-free 30 March 2011

dairy-free 30 August 2011 (roughly)

25 yrs old
diagnosed Celiac through biopsy and blood test (WAY positive) as of 25 Feb 2011


#13 love2travel

 
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Posted 18 July 2011 - 10:10 AM

My life has changed since my celiac diagnosis as well but in many positive ways (not physical yet but hopefully that is coming). It has taught me a lot about myself and others. It has forced me to be introspective and see some things I need to change in my life. As I also suffer from severe debilitating chronic pain it can be very hard to cope on a daily basis. I must lie down to watch TV. We had company last weekend; I had to stand to eat. At restaurants (we seldom eat out for obvious reasons) I must walk around often and stand sometimes. I must spread out an old sheet on the ground to lie on my stomach to do weeding. I cannot kneel or bend over. No painkillers help whatsoever. But I do what I have to do. I adjust. Sometimes it can be embarassing lying on a sheet in my front yard but what else can I do?

I do not allow myself to think about my future because if I am in such pain at my (relatively) young age, how on earth will I be at 50? 60? But I do allow myself to anticipate fun things such as tending my vegetables in my raised beds and gourmet cooking when I can and reading.

It really helps to cultivate new interests! As I must lie down at least half the day I read. LOTS. I feel like a walking encyclopedia and am pleased at the knowledge about things I am gleaning. My husband and I are moving to Europe so I am teaching myself (to a certain extent) the language. If you have something to dwell on other than celiac disease it really helps so much! When you avoid doing things because of pain/sickness it is called fear avoidance. I used to do that. My pain controlled me - not I control it. Dumb pain! :P

The more you think about what you HAVE become (as you put it in a not so good way!) you do become that. Focus instead on what you CAN become instead.
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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.




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