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JerryK

Forgive Me For I've Been Bad

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Howdy, hope everyone remembers me...at least somebody <_<

So it's been several months since I went gluten-free..and I have a problem. My problem is that after a few weeks, I feel NORMAL. I don't feel great, I don't feel terrible...I feel normal.

The problem with feeling normal is I start to forget. I think to myself, today I don't feel terrific, so

it must not have been the gluten that was my problem (when in fact I don't feel terrific because I slept 4 hours the night before). I start to doubt...I start to believe there was nothing wrong, I start to believe it was all in my head.

Then I go out to lunch with some friends and I allow myself to eat half a dozen croutons in my salad. After all a few croutons couldn't hurt...right?

Several hours later I then REMEMBER in great detail why I'd stopped eating gluten as I felt like I'd been hit over the head with a stupid stick. My eyes felt like "two pee holes in the snow" I had a headache, body aches...anxious/depressed/lethargic....the whole darn package that I hadn't felt for

months. This happened on Friday, then of course I had the big D on Saturday to top it off.

Not sure where I'm going with this, other than to vent that I knew this would be a problem without an official diagnosis. Anyone else have a similar problem after they've been gluten-free for a while, they start to forget about it...then have to be reminded? J


Dental Enamel Defects

Gastro symptoms

Positive Dietary Response

Enterolab Antigliadin IgA positive 12/06

Transglutaminase IgA Positive

Blood TG IgA Negative 2/07

HLA-DQ 3,1 (Subtype 7,5)

Gluten Intolerant...Likely non Celiac

Western Oregon (Or-ee-gun) US

Why Worry?...YOU are a sentient being on a habitable world in a cosmos largely filled with nothing.

You

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I have done the same thing in the hypersensitive realm. I go weeks without getting glutened and start thinking I'm being too careful and get myself zapped. I bought a bag of gluten-free chips a couple weeks ago when I was out shopping and didn't wash my hands before I ate. Not smart.

I also do the same thing with St. John's Wort - an herbal antidepressant. I start feeling normal and then forget to take it.

It's also hard being out with friends. You don't want to make a big deal out of it and just enjoy yourself.

I think it's just par for the course. Don't worry, the bandwagon is still here. Plenty of room. Hop on.

:)

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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Hi Jerry,

No kidding--I was actually thinking of you the other day, wondering if you'd left us :unsure:

I'm diagnosed and have been gluten-free for almost 2 years now. While I know better than to test myself with gluten, I do know what you mean about feeling "normal again". I think I can't possibly be as sensitive anymore, and somehow get disapointed when I find I've reacted to being cross contaminated. :blink:

I do, however, test very small amounts of other foods that I'm sensitive to (there are several). Other than rice, no luck there, either. :angry: But hope springs eternal....

Ya just gotta wrap your head around the fact that this isn't going away--be happy that you can make the adjustment to your diet and feel well the vast majority of the time. ;)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Anyone else have a similar problem after they've been gluten-free for a while, they start to forget about it...then have to be reminded? J

Jerry WHO? ;)

I do have to remember that I can't make a sandwich for myself with the gluten bread my husband insists on buying, but it's not because I want the bread (I actually prefer my homemade gluten-free bread to the sawdusty Wonder bread hubby likes). It's because I'm so used to making a sandwich with whatever loaf is on the counter, and I keep my gluten-free bread in the fridge or freezer.

In terms of going out to eat--nope, you couldn't pay me to eat gluten on purpose--and I don't have anything close to the reaction to gluten that you do. In fact, the 2 times that I did try gluten on purpose about last summer, I didn't have a noticeable reaction at all.

But I know enough people with lupus, MS, fibromyalgia, diabetes, (not to mention one who died of lymphoma), etc, that I am just not tempted. I already have enough autoimune problems. I don't want or need more.

I wonder if a large part of what you might be feeling is cravings brought on by not being totally gluten-free for long enough?

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hey there, dont feel bad i did the same thing on friday, fell off the wagon, had to eat a choco chip cookie with the kids, wont be doing that any time soon. man its easy to forget, expecially when everyone else is doing it. oh well, saturday i had one of my enjoy life lemon cookies - they are yummy-and felt much better for it. just get back on the wagon! and hopefully we wont fall off any time soon :lol:


Nadine

mom of 4 great kids - 2 diagnosed with autism and 2 typical kids (thank goodness)

all this started after my hysterectomy in March of 2006

G.F. since Feb 2007

Soy free since April 2007

Blood work was negatvie (after 2 weeks of being on the gluten-free diet)

entrolab results:

Antigliadin 9 (normal <10)

HLA-DQB1 Allele 1 - 0302

HLA-DQB2 Allele 2 - 0502

HLA-DQ 3,1 (subtype 8,5)

carrying one celiac gene and one gluten intolerant gene

nurse at entrolab figures i caught this early and dont eat gluten anymore

life is like a box of chocolates;sometimes you get stuck with the yukky coconut fillet one

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Jerry,

At some point you will look at gluten containing foods and automatically refuse because you know they'll make you very sick. Unfortunately my crystal ball can't tell me how many times you will fall off the wagon before you get to this point.


Phyllis

Gluten Free - 30 years

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Hi there!

I'm quite new here - still learning how to post properly.

I too wish this would just go away and let me be normal again. I have to remind myself, constantly, how terrible this past year or so has been, or am certain that I would give in to some of the things that I miss so much. I haven't had my hair professionally cut since October and am just now able to leave the house for long enough to get it done. That in itself should keep me in line. :blink:

I got accidentally glutened a couple of days ago. Can't figure out how. I am so careful and prepare most foods from scratch. The only thing I had that day that I never made myself was a cup of green tea at my daughter's house. I had heard that some tea bags are sealed with gluten? So that could have been it perhaps - who knows. It must have been a very small amount but enough to make me miserable and back to the Immodium once again. That darned brain fog is so unmistakeable too. :(

Being human beings, we are bound to have some slipups, but for us it seems to involve so much more than a slip off a diet.

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Congratulations Abygail! on getting to safely leave the house. That's HUGE! I had the same problem. Now I can even eat BEFORE going out. Even huger. And......just because I can?......I eat IN the car!

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Jerry,

At some point you will look at gluten containing foods and automatically refuse because you know they'll make you very sick. Unfortunately my crystal ball can't tell me how many times you will fall off the wagon before you get to this point.

As a rule I do this. However as I said in my post, I start to feeling normal and start to forget.

Time sort of eases the memory of lots of things, including how badly gluten makes you feel.


Dental Enamel Defects

Gastro symptoms

Positive Dietary Response

Enterolab Antigliadin IgA positive 12/06

Transglutaminase IgA Positive

Blood TG IgA Negative 2/07

HLA-DQ 3,1 (Subtype 7,5)

Gluten Intolerant...Likely non Celiac

Western Oregon (Or-ee-gun) US

Why Worry?...YOU are a sentient being on a habitable world in a cosmos largely filled with nothing.

You

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Jerry, I don't have an official diagnosis either, but all I can say is that I must dislike the bathroom more than you. ;):lol: No, I'm never tempted to cheat. I remember the feeling all too well. Besides, IF I were going to cheat, it certainly wouldn't be CROUTONS!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Besides, IF I were going to cheat, it certainly wouldn't be CROUTONS!

Perhaps that's the crux of the biscuit, though. Jerry's mind forgets about little apostrophes of gluten and the longer he's gluten-free, the more his body is likely to remind him of his old foe. Just a thought, that's certainly what's happened to me and if it's the case, will take care of us as we gallop onwards to senility. :D

Margaret, who is now wondering if Zappa was a celiac...

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If you're to the point where eating six croutons is a majorly big deal that makes you feel guilty and horrbily sick...well...it sounds like you've made a whole heck of a lot of progress!


"Let food be thy medicine, and let thy medicine be food." - Hippocrates

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Cheating on Croutons :D:D Hmm... I'd go for the fried chicken at Chicken Kitchen, where everything is deep, dunked and fried, and of course, the long missed McD's Fish Sandwich with cheese.

( :ph34r: I'll go away now.)


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Cheating on Croutons :D:D Hmm... I'd go for the fried chicken at Chicken Kitchen, where everything is deep, dunked and fried, and of course, the long misses McD's Fish Sandwich with cheese.

( :ph34r: I'll go away now.)

I don't know Chicken Kitchen, but am totally with you on the McD's Filet O'Fish (?) and the random placement of the Sauce Tartar.

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It's like Carpal Tunnel syndrome. You stop typing on the computer so much, it goes away, you forget about it... :lol: Gluten is the same way....


Dental Enamel Defects

Gastro symptoms

Positive Dietary Response

Enterolab Antigliadin IgA positive 12/06

Transglutaminase IgA Positive

Blood TG IgA Negative 2/07

HLA-DQ 3,1 (Subtype 7,5)

Gluten Intolerant...Likely non Celiac

Western Oregon (Or-ee-gun) US

Why Worry?...YOU are a sentient being on a habitable world in a cosmos largely filled with nothing.

You

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Yea--always lurking in the background, ready to pounce :D


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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I don't know Chicken Kitchen, but am totally with you on the McD's Filet O'Fish (?) and the random placement of the Sauce Tartar.

Wow! It is so funny that others miss these too. I used to order the sandwich and then I'd make them give me a cup full of tarter sauce for dipping. I didn't eat them often, but when I did I made sure that I got an entire days worth of calories all in one sandwich. :P Man, were they good!


~Angie~

Gluten free since May 2004

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Wow! It is so funny that others miss these too. I used to order the sandwich and then I'd make them give me a cup full of tarter sauce for dipping. I didn't eat them often, but when I did I made sure that I got an entire days worth of calories all in one sandwich. :P Man, were they good!

Ah huh! Sometimes there are just not substitutes. But, at least my brain now works in progressive order. I still want one of those darn things. :angry: But the satisfaction is momentary and weigh the risk.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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It's like Carpal Tunnel syndrome. You stop typing on the computer so much, it goes away, you forget about it... Gluten is the same way....

This may be true of some, but not true of me. My carpal tunnel has been with me for 10 years now and I never forget I have it.........and gluten is not something I have forgotten about since being gluten free. I have never intentionally ate gluten since the day I went gluten free, not once. I was so sick for so long before going gluten free, that I never wanted to touch it again, once I felt better--NEVER! In 7 years, I have only been glutened a few times.

At the vendor fair yesterday we were talking about this. No one in the group that was chatting had ever eaten gluten again on purpose--so I guess it goes both ways.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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As a rule I do this. However as I said in my post, I start to feeling normal and start to forget.

Time sort of eases the memory of lots of things, including how badly gluten makes you feel.

You start to feel normal *because* you are avoiding gluten. As long as you want to not feel below normal, you keep eating gluten free and doing exactly that - don't slip. Maybe it's easier after a couple years...


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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A friend of mine who is a sports medicine doctor swears by her chiropractic for carpal tunnel, as do several violinists I know....They all say that the chiropractor fixes it in 1-3 visits, as opposed to surgery and months of PT.

Might be worth checking out, Darlindeb!

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I spend my time doing my best to avoid gluten. It still seems to sneak in which makes me mad. I so miss Panera Bread Asiago Roast Beef Sandwich. Before I went gluten free, I didn't eat that much bread. It had to be a good homemade bread to even be worth eating to me. I subconsciously avoided gluten for a long time. I have a little sister that was diagnosed at a year old. She has a long list of health problems which I'm sure are due to not staying completely gluten free. I am trying to avoid any more than I already have in the autoimmune area.

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Jerry - Welcome back to our real world :blink:

Cindy

The real world:

NO deep dish pizza. NO Whoppers or other fast food burgers. NO Kraft Mac and Cheese. NO soup and sandwiches. Desserts are problematic, especially brownies (another NO). Another NO to cheese fries. NO to fast food in general. Pick your way through Chinese food. NO to boxed specialty potatoes (au gratin, etc.) And a host of other things. This is a disease that demands that we learn to cook, or else.


banana baby

epilepsy dx'ed at 15

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Dear JerryK,

We were wondering where you have been! I am like Darlin' Deb, I do not get tempted to cheat. My health issues caused by it were too severe. I have such a violent reaction, cheating is not tempting. I miss Big Macs and Fries, but I have another way around that. I am going to get those "Top Secret Recipes" books, and use gluten-free substitutions. It will work! I know I can do it! All it takes is a little effort!

Dear Ed_G,

I think you will be surprised what we can have! I have a present for you to welcome you to the forum! I have a list that should really help. This is overwhelming. I went through this with myself six months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margerine

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and *White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip*

Philadelphia Cream Cheese*

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)*

Snack Foods:

Utz Potato Chips (Found at Sam


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

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