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Guest BERNESES

100 (or More) Things To Do When You Are Glutened

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I'll throw in mine:

1) Pop an Immodium

2) Make sure nothing antisocial happens during class

3) Temporarily change diet to 'Berlin-defense mode', eating mainly meat, rice, potatoes, etc.

4) Eat a lot, to keep up weight and hopefully get gluten out of my system ASAP

5) Go to the gym anyway

6) Check this forum

7) Maybe get a little militant, agitated, self-pitying, etc. until symptoms pass.

I don't really have any "comfort" techniques. I just plug along.

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Guest BERNESES

We're up to 108! Woo-hoo!

101. Window shopping from home- Go on ebay and look at all the pretty gems and dresses (I LOVE THIS!). I look at kate Spade purses and dream vacations. God the Internet is great!

102) Pop an Immodium

103) Make sure nothing antisocial happens during class

104) Temporarily change diet to 'Berlin-defense mode', eating mainly meat, rice, potatoes, etc.

105) Eat a lot, to keep up weight and hopefully get gluten out of my system ASAP

106) Go to the gym anyway

107) Check this forum

108) Maybe get a little militant, agitated, self-pitying, etc. until symptoms pass.

LL CoolJD- I HAVE to ask about the anti-social thing happening in class because that is TOO funny. I'm a teacher and a grad student and mostly my students and classmates cheer me up but occasionally there's this one person in my class I just want to slug! Not one of my students but this guy who has been in my grade classes for a year and a half now. I'd LOVE to hear what happens to you!

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109. Get on with life, it's too short to be lying around having a pity party. (Sometimes easier said then done)

Having not had symptoms since I was 3 or 4, I'm 22 now, I forget what most of them are! From the looks of this list, I'm not looking forward to being glutened, which I'm afraid happens more often then I think.

Wow, that was one long run on sentence. Anyway, glad to be here and pick up some good advice from fellow celiac disease folks.

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109) Take 30mg of NADH.

I don't get gastric problems (except a little pot belly), so my healing process concentrates on lifting the fatigue and psychiatric effects of gluten/casein. After that has passed I try and sort out the annoying acne flair up that accompanied my glutening:

110) Sit in a nice hot bath with a face mask on.

And to build my strength back up:

111) Get as much sleep as possible.

112) Be EXTRA careful for a week (ie: eat every meal at home, don't try any new foods) until I'm 100% better.

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109-112 is now actually 110-113 ;-)

I love the 'no pity parties' one AND the 'eat at home for a week' thing...but, if you cannot do that - take your own SAFE food with you when you need to during that week! (I guess that was obvious?) :-)

What is NADH, BTW?

114 anyone?

Oh...I have one....how about, look up some good jokes on the Net and then call a friend to tell a really great one to?..It takes the focus off yourself, brings joy to someone else, too...and any laughter you may get out of it may help expell the gas faster ;-)

OK....115, anyone?

Gina


"Get busy living

or get busy dying."

From: The Shawshank Redemption

--------------------------------------------------------------

gluten-free since Jan 1 '05

Positive response to diet within days, felt 'alive again' within 2 weeks

Feb 22 '05:

Diagnosed "Celiac Sprue, and IBS" by a GI doc, Dr. David Lin of Danville, CA

via blood testing 53 days after I began the gluten-free diet on my own:

Test results at 53 days POST going gluten-free were:

Gliadin AB IgA = 29.9

Since 30+ = positive for Celiac Disease when ingesting gluten, my doc

diagnosed me with Celiac Sprue then and there.

Gliadin AB IgG was 5.6 at that point

-------------------------------------------

Endoscopy with biopsies, AND colonoscopy with biopsies were done,

only to rule out other possible GI problems (especially intestinal

lymphoma) - My doctor told me the results indicated "no current damage

found" - and that as long as I stay gluten-free, I don't need another

biopsy for ten years.

Follow-up blood testing was done about one year later, by the same

Gastro doc, in Nov '05:

Gliadin AB IgA =26, Gliadin AB IgG <1

Blood testing done again by him, 5 months later (March '06)

He then told me my tests results were back to normal, and "Keep up the

good work! You can't argue with success!" :-)

I now see him one time per year for routine testing to make sure I am

staying gluten-free.

------------------------------------------------------------------------------------------

ADDTIONALLY:

I was also diagnosed as positive for antibodies and autoimmune

response to gliadin by Enterolab, via stool specimen taken 56 days

gluten-free

and I have one of the two genes that 'cause' Celiac Disease:

"HLA-DQ8," via Enterolabs cheek cell test kit

---------------------------------------------------------------------

I began a COMPLETE 'Gluten-free Casein-free' diet in Nov '05, due to:

"positive" for casein antibodies from Enterolab (in Feb '05)

and

"positive" for casein IgG (Elisa) via York Labs' finger-prick blood

test, Sept '05

and continued 'stomach pains,' although nothing compared to before

going gluten-free....

UPDATE: ALL remaining symptoms disappeared within weeks of going gluten-free&CF!

**********************

My PAST illnesses I believe are attributable to Untreated Celiac Disease:

Recurrent ear and throat infections in childhood

Frequent childhood stomach aches, underweight, picky eater

Tooth enamel problems/excessive cavities in childhood

Diagnosed in 20's with non-allergic rhinitis

Two spontaneous abortions (childless)

IBS diagnosis at age 28 (all better post going gluten-free and casein-free)

["Horrible" digestive problems from ages 32-47 - excess gas,

diarrhea gone post gluten-free!]

Reflux diagnosis at age 35 ('reflux' gone post gluten-free)

ADHD diagnosis at age 38 and at age 48 (not as bad with Gluten-free Casein-free diet)

Broke elbow in 2 places, age 39

Osteopenia diagnosed at age 44 (bone scan revealed thinning of spine -

taking Calcium and Vit D now)

Fibromyalgia diagnosis at age 40 (fatigue and pain all gone post gluten-free!)

Minor depression with anxiety diagnosed at age 42 (taking Paxil)

Skin cancer - squamous at age 43 and pre-melanoma at age 45

Adult acne (this, too, went away, but only after going dairy-free)

Topical dermatitis (so bad I needed steroid shots) diagnosed at age 46

(That's gone now, too!)

Excessive bruising of skin began at age 45:

I was told by derm doc AND family physician "That's just thin, aging

skin, nothing you can do about that" (GUESS WHAT?! ...NO unusual

bruising POST going gluten-free! I can now wear skirts and shorts

again!)

SO many years of being sick...

Hopefully, others will benefit from Science, and the increasing media

attention being given to Celiac Disease and gluten-based illnesses,

and will not have to go through what I, and others on here, have had

to go through.

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115. Have my studly gorgeous hunk of a man rub my head...puts me to sleep every time....ahhhhhhhhhhhhh bliss. :D

116.again from my gorgeous man....cuddles, cuddles and more cuddles.

117. Raspberry or fennel tea....very soothing for the belly.

118. I go out and smell my roses...always a plesant experience.

119. Meditate (if i can relax enough...go back to 115..hehehe)

120. Read a great book

whooooo hoooooo 120 great ideas for feeling better :D (hope i did not doulble up on any ;) )

have a great day :)


Diagnosed celiac disease Aug 2005 (very positive bloods)

gluten-free since diagnosed

Epileptic

Epstein Barr Virus and CMV (both related to glandular fever and with you for life)

Irritable Bowel Syndrome since forever.

highly allergic to all types of grasses and grass seed (level is high at 6, mine was 69!)

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73. Force fluids, and then force more fluids. My new favorite is Twining's lemon and ginger tea. Its' caffeine free too so it won't keep you awake. The lemon is perky and the ginger's good for the stomach.

Meg


Diagnosed and gluten-free since July, 2003.

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Sometimes when glutened by husband takes out his photo albums, old and new and flips through them while on couch.

Or, he'll put on an old funny movie like Young Frankenstein or a Don Knotts one and get his mind off of his tummy.

Yesterday he was a trooper.. we had to go to mall to get a size larger autumn weight pants for him (he gained 7 lbs since Jan - he's now 134 at 5' 10"!! and his 32 inch pants are tight in waist). He went from 32 waist to 33! He was feeling tummy achy in mall while shopping, but he wanted to continue shopping so we went from Sears to Macy's to Lord and Taylor and he tried on as many 33s as he could find (it's a difficult size to find). (34s are too big in behind and legs as he's so thin).


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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Is there such a thing as having celiac disease really bad or not so bad. or if you have it, you have it, plain and simple like aids or something?? Does anyone know. If anyone has any lists of gluten free products like soaps lotions etc would you email them or put them on here. I am so overwhelmed with all this. bknutson@wirelessbeehive.com

thankyou so much for you support on here. I am so thankfull I finially found this

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Guest BERNESES

Welcome bknutson- you've come to a great place. As far as having Celiac's bad versus not so bad I guess that the answer is kind of complicated. Have you been diagnosed? If you have definitely been diagnosed, then no matter what, like AIDS, you have it. And to prevent any further damage, you have to remove all the gluten from your diet.

BUT with that said, there are varying degrees depending on how much damage you have. If you've had it for a long time and a lot of damage has been done, you may feel very sick and it may take longer for the gluten free diet to heal you. If you don't have Celiac's but are gluten intolerant, there are varying degrees at which a person will have a reaction to gluten. For example, some people with Celiac's can ingest gluten and have no symptoms at all (BUT they are still damaging their bodies) whereas others like me get very, very sick from very small amounts.

I'm in a doctoral program in Education, and I'll tell you, learning about this disease has been harder than my coursework! But this board is the BEST place you can be.

Did you get the emails I sent you? Beverly

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Not sure what number we're on now, but here are my suggestions:

- Read the Mitford Years books by Jan Karon. Even at my sickest, I found these books so comforting and laugh-out-loud funny in spots.

- Create a comfy bed. There's nothing more soothing than curling up on a soft bed with lots of pillows when you feel bad. I have soft T-shirt sheets for spring and summer; cozy flannel for fall and winter. Add electric blanket, home-made afghans... whatever says comfort to you.

- Gentle exercise. Take a walk, if the weather's nice. Do some yoga or stretching. Helps keep things moving.

- Drink plenty of fluids and eat your safest foods. Lots of fluids will help flush out toxins. Safe foods reassure you won't eat something to make the problem worse.

-Spoon with your significant other. Nothing more comforting to me... and if your S.O. has warm hands, they can help relieve abdominal cramping.

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I pull out my collection of Erma Bombeck books and re-read them again and again, laughing and crying the whole way.

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This is kind of off topic, but …

59. Call a friend who doesn't have Celiac's and makes you laugh. I talk to my friend Niki who also has an auto-immune disorder, and she refers to it as "Celeriac's" and we joke about how I wish it was a celery intolerance because I HATE celery.

I think I might actually have a celery intolerance (at least with the seeds), although that's in addition to gluten issues, I fear. I think I'll go find out (although maybe that's not such a great idea). I don't have anywhere I have to be for the rest of the day, though.

All I know is something in a gluten-free (also dairy-free, nut-free, egg-free, soy-free and all that) concoction I made caused me to be nauseous and later gave me really bad diarrhea without warning (no gas or anything beforehand)—diarrhea seems to be quite rare for me (and I don't seem to get it from eating gluten), unless I drink bad milk or something. I thought it was the bean flour at first (since it was the first time I had used bean flour), but now I'm not so sure, after having read up on celery issues (I used celery salt in the dish, probably the first time I've used it much, which salt is made from the seeds—the strongest reactions come from the seeds, they say). I only began to suspect the celery salt when I had some plain celery today, by itself, and I sensed some mild nausea (very mild, but I still noticed it—perhaps it's just way stronger in the seeds). Plus, the celery smelled different than usual—kind of like stringent, bad citrus. I don't think the celery actually was different, though—I think I was just more sensitive to something about it this time. Plus, I think I can often smell things that don't agree with me, strangely enough (this includes personal care products, food and such; the citrus smell was like the citrus smell in shampoo that doesn't agree with me, after it started not agreeing with me that is; it didn't smell like that before).

I actually hope it's the celery (as long as it doesn't get worse). I love to use beans, but I don't have occasion to use celery much. Of course, it's possible it was both the celery and the beans together (and I don't hope for that). I know I had a hard time getting myself to beans as a child (at least if they didn't have much meat with them). Beans don't normally give me diarrhea, though (they just perhaps give me a certain feeling related to energy, as if I wasn't metabolizing them properly, if I ate large amounts of them, but that may not have been the beans, I suppose)—I just figured maybe in flour form beans might affect me differently (seeing as the particles are probably separated much more than in something like mashed refried beans—and I did grind them with a WonderMill, which pretty much obliterates the beans).

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1) Make healthy gluten free food. Whenever I get glutened, I always tell myself (with each safe meal, I'll heal a little bit more.. and in like.. 90 meals it'll be like it never happened.

2)watch a movie to get my mind off it

3)throw myself into my work and stay there for as long as I can (I'm a writer)

4)Smoke a bowl and relax under the stars. I really believe in medical marijuana and it has helped me a lot with glutenings in the past. Plus I just like it. :P And looking at the stars always reminds me that the universe is big and I am a spiritual being, only borrowing this body from mother earth, and that one day I will be free of it's limits. :)

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Get on the internet and do family history research. I can do this all day and forget where i am, who i am and what's wrong with me. :P yep, I'm addicted to genealogy :D Vicky

109-112 is now actually 110-113 ;-)

I love the 'no pity parties' one AND the 'eat at home for a week' thing...but, if you cannot do that - take your own SAFE food with you when you need to during that week! (I guess that was obvious?) :-)

What is NADH, BTW?

114 anyone?

Oh...I have one....how about, look up some good jokes on the Net and then call a friend to tell a really great one to?..It takes the focus off yourself, brings joy to someone else, too...and any laughter you may get out of it may help expell the gas faster ;-)

OK....115, anyone?

Gina


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

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Fabulous topic!

-take a bunch of slippery elm, papain enzyme, bromeliad, glutenzyme, vitamins and teas

-eat whole cloves to control spastic burping, GAS-EX FOR SPASTIC OTHER EMISIONS

-look at garden books or house decorating books and dream of future plans

-paint or draw a picture of your pain

-take a long, hot bath with bath bombs or bubbles or salts

-give yourself a mani-pedi, facial and hair treatment

-have a movie marathon (hit the local video rental store)-- thank god for the pause button!

-bake yourself a gluten-free cake or brownies and eat some

-feed the squirrels whatever got you and watch them fight over it. Laugh maniacally.

-spoon with the person you love

-call it a day, even if it's only 6 am

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Apparently this list started four years ago and I just found it tonight. It's fabulous. Thanks to everyone for validating my choices. It really, really helps to know I'm not alone. May God bless.

This is definitely a good thread to go through...I'm glutened right now and very very frustrated because I don't know what is glutening me :( But this list itself lifted my spirits a bit. I'm bookmarking it and going to spoon with my honey.

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73. Sleep in a separate room so you don't feel guilty about "gassing" anyone.

74. Catch up on seasons of shows you missed or always wanted to watch.

75. Take naps in the darkest, coldest room in the house.

76. Wear the most comfortable clothes you own. You're going for comfort not speed!

77. Make a HUGE pot of REAL chicken stock and white rice.

78. Just slow down and relax. Spend time with family. Life can get so crazy we forget to some times. Sad we have to get sick to be able to justify JUST SITTING.

79. Snuggle under a thick blanket and eat smoothies : )

80. Let your loved one's take care of you. You always take care of them and they in turn like taking care of you.

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73. Hang out with your grandchildren - or borrow some kids. They think it is funny if you fart

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73--take a walk

74--horseback riding is GOOD

75--if you are feeling well enough, clean the barn with LOUD music!

76--sit and talk to chickens. They always listen!

77--have a glass of Sherry!

78--do some crosstitch or scrapbooking

79--teach the parrot some new words

80--mix up some gluten-free flours and think about what you can make when you feel better

81--got to Borders or B&N and look at the cookbooks--then sit down and have a cuppa and read a book! (then buy it too)

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