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pedro

Seven Things You Hate About Celiac Disease

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Hello everyone.

We need to vent the frustrations.

Seven things you hate about Celiac Disease.

1. Diarrhea

2. Headaches

3. Pains all over

4. Stinky

5. Abdominal Bloating

6. Not eating what I want (croutons), Big Mac, Pizza.

7. Lactose sensitivity ( I love Cheese)

Tell me your seven or maybe you have more?????????

Have fun always even if you are sitting in throne (bathroom with the big D).


Have not I commanded you? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the LORD thy God is with you every where you go.

Jos 1:9

I can do all things thru Christ which strengtheneth me.

Phi 4:13

Blood Test: Negative 03/2006

Biopsy Negative 04/2006

Stopped gluten-free diet 04/2006

EnteroLabs: Positive 04/2007

Fecal Antigliadin IgA "Positive"

Fecal Antitissue Transglutaminase IgA "Positive"

Quantitative Microscopic Fecal Fat Score "Positive"

Fecal anti-casein (cow

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Celiac.com Sponsor (A8):

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1) Can't do ANYTHING spontaneously anymore. Have to plan and cook the food even for the most basic trips and activities. Went to the park for a playdate yesterday. Never met the people. Didn't know if they would bring snacks to share. Had to bring a bunch of different snacks so my kids wouldn't feel left out of whatever they were having.

2) Having to cook everything from scratch. I'm glad I know how to cook now, but having to cook three meals a day is getting old. I've learned new respect for my grandmother though. :)

3) Second-hand gluten (cross contamination) is the most pain in the rear part of this. If it wasn't for that, this would all be totally easy.

4) When I get my hair done I get glutened.

5) My dad probably died, at least in part, because of undiagnosed celiac. Stomach cancer after years of depression, anxiety, IBS, skin problems, memory and concentration problems. There are also at least a dozen other family members who had celiac-related problems, and at least that many still alive that need to be tested. No takers so far.

6) Ordering in a restaurant and having them roll their eyes or give me a look that makes me feel like I shouldn't even be there.

7) That my kids have to go through all of this too.

:(

Nancy


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

~Chinese Proverb

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1. i hate that i got sick from something and almost missed soccer games this morning.

2. i hate that i have to read labels all the time.

3. i hate when i have lots of goods day then bamm im sick for an week.

4. i hate that i had a problem wiht casein and had to give up cheese.

5. I hate that this might effect my kids later in life

6. i hate that we have no place here that has the good gluten and dairy free foods

7. i hate that i have to look up everything before i eat it lol

paula


gluten, casein and soy free

on low carb/low sugar diet

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1--gas :ph34r:

2--having to bring food with me where ever I go.

3--that I may have passed it to my sons

4--I'm afraid to eat out with my husband anymore

5--that I have several other intolerances along with it

6--for all of the time I spent sick, missing things I wanted to be doing, the job I had to quit--all the times I was misdiagnosed and prescribed unnecessary meds and steroids that are most likely responsible for my leaky gut.

7--that no matter how careful I am, I can still get sick off a molecule of the stuff :angry:

Boy, that felt good--thanks Pedro :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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#1... I hate having to carry 3 days of food with me to work (it was so much easier to just buy a meal at the restraunts (sigh) and yes i asked they refuse to make even 1 meal gluten-free

#1b... I hate that I work with jerks who cant find the engery (prolly because of all that gluten they consume) to clean out the danged microwave after they use it and splatter gluten all over the insides so I have to eat my meal cold rather than risk getting mine contaminated

#2... I hate the extra padding around my middle (but hopefully it will slowly disappear)

#3... I hate that it took me 3 years of trading thoughts (and pills up the kazoooooo) with an idiot to finally go gluten-free for good who cares what he thinks about it.

#4... I hate reading all the labels and not knowing whats REALLY in "natural flavorings"

#5... I hate that I will never be able to eat at applebees again since receiving their "sorry we can't help with that" letter in my email today (sigh)

#6... I hate having to currently buy alot of my food online because I haven't learned to read between the label lines quite yet

#7... I hate that my printer for my computer is busted and cant print stuff out to help read between the label lines at the grocery store


Just my .00000002 cents worth

If I knew what I was doing years ago I would have half a clue today!

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1. I hate having problems with corn and rice in addition to gluten

2. I hate gettiing glutened from a gluten free menu

3. I hate the headaches, muscle weakness and vomiting after getting glutened.

4. I hate having to wear larger clothes because of bloating in the afternoon

5. I hate the added expense of gluten free products

6. I hate repeating over and over this disease to others.

7. I'd love to have a big mac again


Positive biopsy, positive blood test in 2/2006

Muscle biopsy in thigh in 2004 to confirm metabolic myopathy (found denervated nerves)

Interstitial cystitis diagnosis 2004

Hysterectomy 2003

3 for c-sections, 2 laparoscopies to remove abdominal adhesions

Abnormal heart beat when tired or glutened

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I am soooooooo glad to be here. I can finally talk to people who understand me, and my fustrations.

You all are the best!!!!!!!


Have not I commanded you? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the LORD thy God is with you every where you go.

Jos 1:9

I can do all things thru Christ which strengtheneth me.

Phi 4:13

Blood Test: Negative 03/2006

Biopsy Negative 04/2006

Stopped gluten-free diet 04/2006

EnteroLabs: Positive 04/2007

Fecal Antigliadin IgA "Positive"

Fecal Antitissue Transglutaminase IgA "Positive"

Quantitative Microscopic Fecal Fat Score "Positive"

Fecal anti-casein (cow

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1 Having to manage my every food thought, weighing up whether it is gluten free or not. Damage control.

2 Half of my well meaning friends, family or colleagues inspecting my lunch to rule out gluten. Cross examination.

3 The disbelief from the other half of my friends, colleagues and family who can't understand why I wouldn't drink a premixed alcoholic drink. Paranoia. (They think I suffer from that)

4 Morning tea shouts. Enforced dieting.

5 Label reading. Just because it says gluten free does not mean I will eat it!

6 The level of differences between one coeliac and another. We are not the same thankfully, but it makes it so hard to have a level playing field.

7 Not being invited to friends places as they are too scared to cook for me.

It feels like I have had a total personality change over the last year. I never used to worry so much about anything, but now I don't even know if I know myself anymore. It makes for an interesting life. It is all positive, as I am sure by continuing being gluten free I will have quite a few more years up my sleeve.

Cathy

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1. gluten

2. doctors

3. paranoia

4. the past

5. any place that sells or makes food

6. perplexmatexfriggincrudiodide ingredients

7. the cure

missed the post hope it's not to late to add mine. :blink:


only when hope is fulfilled, hope is lost

*D-Digestive problems throughout youth and young adulthood unattended

*Self-convinced IBS '04 (began eating rice, breads, crackers...SFs to 'slow' the natural process)

*Winter '06 developed severely swelled legs with rashes, white tongue

*Self-diagnosed; Gluten Free Spring '07

*Celiac.com diagnosed Candida, Thrush Spring '07 (all that 3 years prior of nothing but rice)

*Celiac.com diagnosed IC Summer '07

*Winter '08 pursuing more accurate testing for dianosis of the beast in which I am battling

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1) going out with friends and trying to be "normal" and eat something

2) food shopping

3) expense of gluten-free food that doesn't even taste that good

4)having to explain all the time

5)cross contamination

6) how sick I get from #5 and wishing I could at least eat an oreo or something if I have to get sick

7) reading ingredients ALL THE TIME


Bre

Age 29

Diagnosed (blood and biopsy) in 4/01.

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1. still not having a diagnoses (I no, I no that doesn't matter here)

2. LOUD GAS noises from my intestines and releasing out in public

3. The Big D all day and the next two nothing at all except passing gas

4. having people look at you strange when you tell them about celiac disease

5. My have passed it to my daughter who is sick right now

6. still not understanding all the do not eat ingrediants

7. still eating gluten on the weekends with my husband and regreting it later


Fecal Antigliadin IgA 21 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 13 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow's milk) IgA antibody 12 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

You can teach an old dog new tricks!!!

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1. still not having a diagnoses (I no, I no that doesn't matter here)

But it does matter to you, and most of understand how frustrating it is.

Cathy

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Guest lizajane

1. traveling 3 hours EACH way to a grocery store that has gluten-free food. But not being able to get there in the winter.

2. being afraid I will not have any gluten free food in the house--thank god for Amazon and the gluten-free mall!!

3.Diarrhea!!!!

4 Loosing sodium and potassium with my diarrhea so that I fall asleep and can't wake up until I get a gallon of gatorade in me!

5. Having to have someone get me the gatorade and help me drink the first few glasses before I can handle sitting up and drinking by myself. This hasn't happened in a long time-since I have been so totally gluten,lactose,soy,corn and everything else- free!

6. Going to the grocery store for my family. I don't know what anything tastes like any more-so what would they like? Also seeing all the wonderful food that I love (d) so MUCH !!

7. Being invited to dinners and having to ask what they are serving and then still having to take my own food.

8. Explaining to kids at the dinners why I am eating something else, and of course there is not enough to go around to every kid there, so I look so selfish!

9. Eating out and only being able to have salad or a plain steak with a plain baked potato.

10. Now NOT being invited to dinners because I am to hard to cook for with all the fancy foods everyone else wants to eat.

11.Wondering if I have done permanent damage to my body because my villa may not have grown totally grown back and I am not absorbing all vitamins and minerals.

12. Thinking I have done a wonderful job of watching my diet, only to end up bloating or with diarrhea and a major migraine at work .

13. Was on disability for 15 years because of this disease and the effects of it! I did work part-time all 15 years, but sometimes it was a struggle!

One positive note--ALL OUR FOOD IS TAX DEDUCTABLE AS MEDICAL EXPENSE! Advise to others, see if your insurance will pay for it or a Flexible Spending Account--get a Doctors order to eat the food!!

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I hate having not been diagnosed sooner (symptoms for 30 years). I really wonder what my life would have been like.... I am 60 now.... if I had known sooner. PERHAPS NO migraines, depression, colon cancer, fertility problems, numerous stomach and digestive problems, neuropathy, joint pain, etc, etc, etc.....

(Today is a poor me day!)


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1. not being able to go out with friends and eat anything i want

2. the big D word

3. stomach bloating

4. constant weight fluctuation

5. going to the grocery store and taking 43894839543 min. to read the ingredient list

6. exhaustion

7. chronic (!!!!!!!!) anemia that wont go away

im pissed off at gluten today

Kassandra


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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Ha ha ha!!!

1. Reading Labels every day of my friggin life!!!

2. WTH is the natural flavoring?

3. Calling 800 numbers in the grocery store

4. Explaining it to people, and they still don't get it (deer in the headlights)

5. Walking by Cinnabon, or that pretzel place in the mall :(

6. Eating something I don't even want just because its a busy day and I'm in a rush.

And so many more....Having Celiac on the negative side I have to say that it is just completely inconvenient in every way, shape and form. Also it just really sucks that we can't eat whatever we want when we feel like it, just like everyone else. (well most people ;) )

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7 things I hate about celiac:

1) Not being able to comfortably eat dinner out. Having to call ahead and then interrogate the server when I get there. Then feeling afraid that I'm eating hidden gluten. Kind of takes the fun out of the whole experience.

2) The cost of gluten-free food.

3) Being afraid that I'll get cancer, seizures, osteoporosis, nerve damage or all of the above.

4) The fact that I carry the gene and will possibly pass it on to my offspring.

5) The amount of time I have to spend shopping for and preparing food.

6) The loss of spontaneity.

7) BRAIN FOG!!!! Does it ever go away??


little_c

If you scrutinize, you won't be glutenized.

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Someone needs to call cinnobon corp. and demand them to make Gluten Free and the pretzal place Antie Anns.

Donna


Fecal Antigliadin IgA 21 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 13 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow's milk) IgA antibody 12 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

You can teach an old dog new tricks!!!

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