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Are Some A Little Ocd?


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#1 realmaverick

 
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Posted 17 October 2010 - 06:54 PM

I've found lots of helpful info here. But Ive also read a lot that disheartens me.

Before I start, I want to make clear this is in no way an attack on anybody in particular or on anybody at all. But I'd like to better understand some stuff.

It's not been easy, adapting to this new lifestyle. It's made eating feel like a chore vs a pleasure. It's also made dining out a real pain in the ass. But Id accepted it, because getting well was what's most important. So in some ways eating gluten free is slightly exciting. I can't wait to feel good.

But for example, the constant talk on here of being "glutened". I hate the word already. And then the whole "CC" thing. Cross contamination, from door handles? Is this really not a little OCD? I mean even healthy people have off days. It seems many celiacs get sick or feel off form, they assume they have been glutened and pin the blame on somewhere they ate or CC from a door handle or plate.

Before being diagnosed, we eat gluten freely and of course got sick. Surely going gluten free is enough to feel well. Assuming there are not other factors making us sick. Which I do believe is the case with some, but they pin it all on gluten. Rather than exploring there is perhaps more wrong than just celiacs?

I guess the idea of celiacs becoming a part of my identity, doesn't appeal to me. If I really am going to get sick from touching a door handle or using the same pan that once contained gluten, then I really need to reconsider whether I can do this. I think I'd rather be sick?

Is it perhaps some are more sensitive than others? Some do indeed have other issues and pin everything on gluten? Perhaps it's a mix of all the above. I hope so. I really don't want this to rule my life or ruin my life.

I guess my post is a bit of a vent. But I hope it's not taken the wrong way. Thanks for listening. If you understand where I. Coming from, even better :)
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#2 realmaverick

 
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Posted 17 October 2010 - 06:58 PM

Damn. This was supposed to be posted inside "celiacs, coping with". If a mod could move it, I'd appreciate it. Sorry about that. Posting from my iPad, in bed, has it's disadvantages :P
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Main Symptoms
  • Extreme Fatigue
  • Anxiety, Brain fog
  • Sore Eyes

Diet and Supplements Started 23rd September 2010
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  • Holland & Barratt, Vitamin B Complex. 100mg B1, B2, B6, B12
  • Holland & Barratt, Omega 3 Fish Oil. 1360mg x 2. 1900mg Active EPA/DHA
  • Mightidophilus, Enteneric Coated Probiotic. 20 Billion MO, 12 Strains.

#3 pinki656

 
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Posted 17 October 2010 - 07:09 PM

Damn. This was supposed to be posted inside "celiacs, coping with". If a mod could move it, I'd appreciate it. Sorry about that. Posting from my iPad, in bed, has it's disadvantages :P

Hey, im new on here too.. I know it is sooo very overwhelming.. sorry, the pic i have of me is "before" getting sick.. I dont look like that any more.. Ive had all your symptoms and then some.. but yes to your questions.. everyones symptoms and tolerance is different.. Ive learned alot from these sites and it is disheartening.. but Id rather be well.. Ive been sick for two yrs with nothing but misdiagnosis and more meds.. Im not a pin cushion... it does suck but it just basics.. dont eat stuff that isnt fresh and clean.. grow your own if possible.. I wondered if that is why i didnt get sick until later in life.. My family grew most all our foods and I didnt start eating out until I was in my early twenties.. my symptoms came as constant sinus problems and skin rash type break outs that i thought was adult acne after childbirth.. Ive ,earned that my "laziness" to not wanting to grow a garden of which i had been brought up to do could be the reason for my sickness.. I started eating out alot and doing the "quick " meals.. not any more.. I have to spend alot of time in the grocery store and reading labels and researching.. but it better than dying of something that could be prevented..
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#4 Juliebove

 
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Posted 17 October 2010 - 07:19 PM

You really do have to be careful of the cross contamination. Sometimes my daughter has insisted on eating something that says "May contain..." In her case it is more than just wheat. Hers are allergies. Almost always when she eats stuff like that she gets sick. We will no longer buy those things, nor will be buy if it says made on shared equipment.

It's easy to avoid the obvious. It's not so easy to avoid that which we can not see. Daughter gets a rash when she comes in contact with wheat. Before I knew any better, I was using a body wash or shampoo or something with wheat in it. Can't remember. That small residue left in the tub, even though I thought I was rinsing it well was enough to make her break out.

OTOH, it is easy for us to blame our allergies when we do get sick. We don't have celiac. Just allergies. But I can see how someone with celiac would naturally assume that they were glutened when they get sick. I realize this isn't always the case. One just tends to look for the most obvious cause.
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#5 realmaverick

 
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Posted 17 October 2010 - 07:27 PM

Thanks Julie. I didn't consider products containing wheat. Very interesting.

I hope the balance I need to get well, doesn't destroy my happiness. To me, reading many of the posts, it's felt tests whats happened to some. And in many cases they're still not well. I guess I'd encourage people to explore other possibilities. Not to pin everything on gluten. Most of all realise it's a condition, its not who we are. Though I guess it's a part of who we are.

I guess I don't want this controlling my life. Diet I can cope with. But I couldn't cope with living in fear of gluten or having it on my mind 24/7. I'd end up in a nut house.
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Diet and Supplements Started 23rd September 2010
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#6 Christi1996

 
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Posted 17 October 2010 - 08:05 PM

Unfortunately after going gluten-free you are more sensitive to gluten. There also are varying levels of sensitivity, or maybe it would be varying reactions. I get inflammation in my joints and major constipation that lasts for days, my 11 year old daughter throws up and has stomach aches. We don't seem to be incredibly sensitive though which is good.

I wonder though if it is sort-of like alcohol or drugs (except in reverse). They say that when you start drugs you don't need very much to get high but the more you do them, the more drugs you need to feel the same high. I know it is true with alcohol. So I wonder if the more successful a person is at avoiding gluten, the more sensitive they are to exposure. It may also depend on how much damage has been done.

I went mostly gluten-free about 2 years ago - which for me was a big step because I ate some form of wheat at every meal and sometime more than one for. After about 6 months, I started feeling bad again and realized I needed to either go 100% or eat whatever I wanted. Since the gluten-free was more work than I really wanted to do, I went back to eating whatever. 6 months after that I had an a-ha moment that made me realize I needed to be completely gluten-free. I don't obsess over it - I try to read labels but I am sure there is stuff that I miss. I just figure it will get easier.
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#7 T.H.

 
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Posted 17 October 2010 - 10:03 PM

This has been my experience...

From what I've seen, you are very unlikely to have to deal with super-sensitivity yourself. It's pretty rare. I have met very, very few people who are that sensitive. Probably you can avoid worrying about what you touch other than the typical washing of hands before eating, you know?

I think this forum possibly has a higher number of celiacs who have to be more careful, simply because we are looking for help. If avoiding the gluten is easy, and going well, there's not much need to explore a forum, you know?

I also think you're correct in the speculation that there are varying levels of sensitivity. Even in my own family (with multiple celiacs), we can't all eat the same food safely. When something is really contaminated, however, we ALL react.

But we don't all have the same set of symptoms of getting gluten. Two get mild digestive upset within 24 hours. One gets mild bloating. One has severe stomach pain and difficulty controlling her limbs for up to two hours. And myself, I have sudden and severe vertigo and nausea that makes it impossible for me stand up and dissipates after a few hours, then slowly tapers off over about a week.

Also, your wondering if perhaps celiacs attribute symptoms from other issues to gluten? I think that does happen on occasion. There are many issues that Celiacs can have, like allergies, intolerances, bacterial infections, not to mention simply getting the stomach flu every once in a while, of course. I do think sometimes these issues can be ignored and everything attributed to gluten when that's not always the case.

However, I have very much come to believe that CC from very minute amounts of gluten can affect some celiacs, even though I didn't start out thinking that way. I don't actually believe that it's OCD usually. I think probably because most people I know who deal with this didn't start out very afraid all the time and then develop an OCD pattern of avoiding gluten.

Most people I talked to had very nasty reactions, couldn't find the answer as to 'why' for a long while, and THAT'S when they developed the extreme care in avoiding gluten.

When I was first diagnosed, I was not expecting to have much of a reaction. I had NO gut symptoms. I simply had low immune system and nutrient deficient problems, like dizzy spells and getting sick a lot. The only diagnosed celiac in my family at the time had very little reaction to gluten, and didn't have to take much care to avoid it.

That's what I was expecting, too.

So all of the issues I had after going gluten free, I attributed to food allergies, food sensitivities, something else. I cut tons of foods from my diet until I felt better under this assumption. The doctors and I couldn't figure out why these foods were affecting me.

But eventually, my daughter ended up developing gut issues whenever she had something that might be 'questionable' with its gluten contents. I started having very strong reactions, too. I still didn't attribute this to gluten until I started to notice that my vertigo reactions were coinciding with foods that were making my daughter have stomach pains as well. THAT'S when I started thinking about gluten.

That's the point when I started getting more careful, and more careful, and more careful until, yeah, I think about doorknobs. :( Not what I expected when this all started, but...one adapts, honestly.
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T.H.

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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


#8 gf_soph

 
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Posted 18 October 2010 - 02:33 AM

I totally get why you are asking the question, I can see why a new person to the board might read some posts and feel a bit concerned about whether they need to go as far as others. On a basic level, I do believe that people vary in their sensitivity, as well as the severity of their symptoms, and any secondary problems. All these factors are significant when making decisions about how careful you need to be.

If you are one of the people who aren't unusually sensitive, don't have severe reactions, and don't have a lot of secondary problems then you may feel totally fine with a basic commonsense approach to living gluten free. I second the suggestion that the very nature of a supportive and informative board will make it more likely that you will come across people who are highly sensitive, as they are more likely to need support. Likewise you will come across more people with complex presentations and severe symptoms. Working out your sensitivity is based on experience, and is likely to be a bit different for everyone.

My advice would be to go gluten free and eat as well rounded a diet as you can. Be sensible about cc e.g. don't use the same toaster or condiments, and do get new non stick and wood kitchen items. I was told that a typical healing time was about 6 months, so expect that you may take a while to feel better. If you have continuing symptoms after that time, that's when you start looking into other symptoms.

I found that my gluten antibodies dropped a bit after going gluten-free but stayed above normal even a year after. I still wasn't feeling well, so I started getting more careful about cross contamination. The positive blood tests told me that I had to be more serious, it wasn't a paranoid reaction. I also have had a lot of trouble with secondary food intolerances damaging my health, so I have been strict about my gluten-free diet to try and give my system the best chance of working well.

When it comes down to it, people have very different reactions to gluten. Some people's reactions may seem extreme to you, but that doesn't mean they are not real. It is also possible to become unneccesarily paranoid about cc, but in a lot of cases it's based in reality. I wouldn't be put off by thinking that your experience will be the same as theirs, just be sensible about your diet and see how you go.
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#9 ravenwoodglass

 
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Posted 18 October 2010 - 03:34 AM

There are differing levels of sensitivity and those levels can even change in the same person over time. Many of us become more sensitive to CC as we heal, this is the bodies way of protecting us. Since celiac is an antibody reaction once those antibodies go down the sudden introduction of a small amount of gluten through CC or accidental injestion can cause those antibodies to 'flood' the system and cause a reoccurance of symptoms. In some those symptoms are worse than they were when we were still eating gluten.
There is no way to tell how sensitive you are going to be. Some of us are extremely sensitive and others can get away with more.
For now be strict with the diet and let your body heal. If you were diagnosed by blood test get those tests redone at 6 months and see how you are doing with the antibody levels. Do take the precautions that are often mentioned, things like sharing toasters, cutting boards and scratched pots and pans that have been used for gluten foods are things none of us should do. Some have to be careful of toiletries, shampoos etc. You could go with what you are using now and see how your antibodies levels and symptoms go or you can switch now to be on the safe side. Also be aware that if you have a significant other who is eating gluten foods it is best to have them brush their teeth before getting intimate. Another risk that is very real is gluten in the workplace. If you work around flour or gluten grains or even work with stuff like drywall compound you will be breathing it in and getting glutened that way.

Be aware also that some of us do go through withdrawl from gluten so if you feel worse for a short time know that it will pass. I hope your feeling better soon. Don't assume that you will be as sensitive as many here are. You may not be. But also be aware that you could be so if issues don't resolve become more strict and see if it helps.
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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)

#10 srall

 
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Posted 18 October 2010 - 06:29 AM

I chuckled at your post a little bit because I feel like now every time I have a little sniffle I try and recall where I might have been glutened (sorry...I actually like that word...short and descriptive) and never consider that perhaps I may actually have a virus.

I wanted to just assure you too, that as big a pita this whole adjustment to a new diet is, I am so much happier now that I am having trouble finding words to express it. HUGE difference in health, both physical and mental. I went from feeling like a 90 year old woman to feeling 20 (I'm 42).

It sucks...but it'll probably force you to seek out healthier foods and that will benefit you in the long run.

I also have to say, after 10 years of feeling like this was "all in my head" I think it's important to be sensitive to the people here who do have major major health problems from trace amounts of gluten. This is the only place I've found the support and correct information I need to navigate this whole issue.

I think it'll get easier for you, and I hope it doesn't change your approach to life too much. I can tell you have a lot of spirit.
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#11 RideAllWays

 
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Posted 18 October 2010 - 07:51 AM

I am semi-self-diagnosed (MD said go gluten-free, biopsy 7 months later showed villi that had "possibly been damaged in the past" (wtf?) so MD said assume Celiac..) ANYWAYS.

At first I wasn't careful at all, until I started reading this forum. It helped a lot, learning what hidden sources and such, and that I needed separate pans, toaster, etc. To that extent CC seems like a no-brainer. Would you feed a kid with a peanut allergy something that had just been on a plate with a peanutbutter sandwhich?

Then I saw HOW careful some people were, so I started being a bit more careful about where my food was prepared, and my symptoms got a lot better. I gave up soy as well, and had been dairy free for many years before. So things were going well, and I decided to explore a bit; tried restaurants, etc. I work at at a place with a gluten-free menu, we usually use food straight from the fridge, not what we have out front because that could be CC'd. We can eat whatever we want during out shifts, so in 9 hours I'd usually have 2 meals, from the front because I assumed it was probably fine (I used my own fry pan to make stirfries). I was getting sick all the time and couldn't figure out why..so I stopped eating at work and within a week my symptoms went away..guess I do have to be that careful.

Also some people might think that any time they get sick it's gluten, but I know with me and my other two diagnosed Celiac friends at home we can tell the difference. I know about an hour after I eat something usually..if it's only a bit of CC I just get extreme bloating and cramping, and maybe D a few hours later and usually a migraine. If it was a more extreme case of CC, like the time I found a crouton in my salad at a restaurant after I had eaten half, I'll be sleeping on the bathroom floor for days with simultaneous D and vomiting (pleasant) as well as stabbing pains in my stomach...this usually doesn't happen with a flu or virus.

So yes maybe some of us are a bit obsessive, but I do take a bit of offense to the label OCD. Obsessive Compulsive Disorder is a serious anxiety disorder that can be tricky to diagnose. The fact that we are SO careful is more a lifestyle choice that we take so that we don't have to suffer through our symptoms, and if it doesn't interfere with everyday like i.e. work, social, etc. then it is not a mental disorder. My sister, who is not celiac, has severe OCD and it's a lot different than just making sure there isn't gluten on doorknobs so you don't get sick..it's really sad to watch actually, and usually people with true OCD know theres no logic behind their compulsions but they have to do them anyways to calm their anxiety, which can be extremely frustrating to them. So please choose your terminology wisely.

Devon.
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#12 rdunbar

 
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Posted 18 October 2010 - 08:34 AM

I geuss I do wash my hands a lot, maybe you are onto something?

All kidding aside, CC is very very very very very real
I know it sucks, but you have to learn to manuveur around this if you want to get better, it's an ugly fact, I know, and I hate to have to be saying it, but I can give you many reasons:
personal experience;I was a slow learner about this stuff, unfortunatly. I thought I was gluten free for 3 years, was strict about no wheat,but yet my symptoms didn't get better, I was weak, fatigued, and 30 lb under my normal weight of 150
I was sharing a kitchen with gluten eaters, working around gluten, and eating packaged foods, which always are suspect in having trace amounts of gluten, even if it says "gluten free" on it! I was very strict about no wheat, but still never got better.
It wasn't until I got my own kitchen, stopped eating out altogether, switched to eating nothing processed or packaged, (just meat, veggies, and fruit,) that I started healing, and getting better, and feeling better, and I I've gained back 10 lb! I attribute this to what I've learned from this forum, and all the help and support that's available here! I wasn't aware of CC for too long, and I greatly regret it.
Another thing is scientific evidence, ravenwoodglass hit the nail on the head about how this is an immune reaction; my immune system reacts to gluten, whether it's a pizza or a bevy of gluten molecules, I don't think it cares, it reacts either way. It produces antibodies, and as long as it's doing this, you are not healing.
One study done in 2004 showed that 1/60 th of a teaspoon of wheat flour a day was enough to prevent intestinal healing in celiac patients, and only a tiny fraction of that is gluten, as there are many other protiens in wheat, as well as fiber, ect...( the Gluten Effect, by Petersen)
so it's known that a literally invisable amount of gluten is harmful. Whether you get symptoms, or are "sensitive" or not, doesn't change this fact.
Another one is common sense, if you are sensative to poisin oak, is it okay to get away with a little, roll in it every now and then?
No, you will pay for it every time. It's common knowlege that you can get it from your dog, or even the wind blowing some sap on you, so why wouldn't the same thing be true for gluten, if you react to it. Would you pick poisin oak off of your salad and continue eating it??
Professional chefs know about cross contamination, and never put fish, and red meat on the same surfaces or cutting borads without sanitizing them, because they know that when the two are cross contaminated,a dangerous bacteria will grow within a short amount of time. Cross contamination is no mystery or gray area.

One thing I've realized in the healing process that I'm finally embarking on, is that if I have to wonder, "did I get glutened?", I didnt.
Its like wondering, "did I get hit by that bus?"
you'll know it when it happens, last time I got glutened by a chai that was perpared in a kitchen that contains gluten ( pizza oven, so lots of flour around), I didn't have to wonder,
my right arm goes numb and tingly, my joints ache and hurt so much I am literally limping, and can barely get out if my car. My dermatitas herpetiformis rash flares way up, and becomes way more painful and itchy, starts oozing and bleeding, and can't stop scratching it, it's hellish, guaranteed not something I'm imagining. I become super irritable, and anxious, and depressed. There are too many symptoms for me to even go over, and let me assure you that they are all too real. I wish they weren't.( oh yeah, I lose my balance and get dizzy)
Once I got a panko bread crumb in my mouth by mistake, realized what it was, spit it out, rinsed my mouth out repeatedly, and still got fully glutened, could barely walk, ect...
wish it was'nt true, and it does seem strange, or unbelieavable, but to me now it's just glaringly obvious. I do think you have to get the reaction and inflammation in your body down to the point to where you can tell the difference between being exposed or not; if you feel like crap all the time, it's hard to tell.
sorry, feel like i'm telling you what you don't want to hear, but the upside is that learning this way of living, and adapting to it, though hard, is very rewarding, and can give you well being that may have been unimagined, or thought impossible in the past. actually a miracle, when you think about it, and all the countless people who suffered thier lives away, and never knew what it was, or how to cope with it. sure, you may have to do some things you dont want to, or go without things other people take for granted,
I think a lot of the resistance i had was over having to wash dishes every day, I felt like i was entitled to eat out, and be served. when it finally sank in that that is just not an option for me if im serious about trying to heal, and actually end up with a life, ( this has actually been seriously debilitating for me), then accepting the fact that i'll be washing dishes fron now on became much easier. I have nice ceramic and glass dishes, and not too many, so they can't pile up, and i love it!
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#13 tarnalberry

 
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Posted 18 October 2010 - 09:18 AM

Like anything in life, you have to figure out how far you want to go.
Does everyone need to be paranoid about door handles? No.
Does everyone need to avoid sharing scuffed up old plastic colanders used for pasta? I'd say yes.

You have to figure out what *your* particular line is, but let prudence, rather than resistance to change, be your guide. Some of us still successfully eat out, but we are more selective about the places we go to. Some of us do have more or less gluten free houses (some don't), but still eat a VERY WIDE variety of gluten free foods. Some of us avoid anything that wasn't manufactured or packaged in exclusively gluten free facilities, some don't. We all have our different ways of approaching it, and it seems that the best way of figuring out YOUR way is to let your process evolve over time (like over months/years).

If you're feeling like you don't have many things to eat, well, that's a problem of perspective. Like going into a small school's library and saying "there's nothing interesting to read", you have to expand your scope. A big city's main library branch will have so many more offerings to choose from, and so does the world have a lot of things to choose from for eating, if you give yourself the time and opportunity to explore them. I mean, really, how many different ways have you tried making millet? :)
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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Bellevue, WA

#14 lynnelise

 
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Posted 18 October 2010 - 12:00 PM

I would love to tell you that these posts you are reading are from fanatic people obsessed with gluten but I'm afraid they are probably accurate. After almost a year of following the diet I have become increasingly sensitive to CC. Honestly I am at the point where going out to dinner causes issues 80% of the time.

Also I am so intuned with my digestive tract it is truely sad. I can definately tell the difference between gluten and other random ailments because my glutenings follow a pattern. First almost immediately I'll get the big D. Then within a few hours fatigue. The next day achy joints and a rash. Then a day or two later I'll typically get a canker sore.
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#15 WestCoastGirl

 
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Posted 18 October 2010 - 12:07 PM

OP, can I ask when you were DXd and how long you've been gluten free? :)

Unfortunately, when one has been soooooooooo sick for so long, the thought of it coming back truly is terrifying. I've basically been sick since I was 11 years old. I am now 43. I am JUST finding out what's wrong and feeling better. This issue has run my life for more than three decades. You say you don't want celiac disease running your life but illness will do that too, and in a much more devastating way.

It can definitely be overwhelming but I would suggest when you feel that way, take a step back and just don't read posts for a while. Sometimes it really CAN make you feel like you're living in a bubble of no-gluten, no-gluten, no-gluten. Stepping back and just "being" for a while may help.

I don't feel like I'm no longer enjoying eating. In fact, I am no longer terrified of eating. That is amazing to me. Amazing. I have been terrified of eating, and unsure what the outcome of any meal would be, for 32 years. I can't even tell you how much LESS intrusive it feels to have to watch for CC, etc. than to not know on any given day whether I'm about to plunge into feeling absolutely horrible. After you've been gluten-free for a while and start to feel better, you may feel as I do. I am hoping this for you. :) Hang in there.
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- Determined gluten and dairy sensitivities via elimination diet
- DXd Hypothyroid December 2008 (Levothyroxine)
- Ongoing Vitamin D deficiency (rassessed every 3 months), DXd January 2010 (supplements)
- Gluten symptoms: mainly neurological, but some gastrointestinal (brain fog, depression, clumsiness, fatigue, D, bloating, DH)

~Getting my life back!~





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