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CDGuy

A Question On Your Experience With Celic Disease / Gluten Intolerance

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Hi,

I'm doing some research for a report and just wanted to get a general sense of what it is like to deal with Gluten intolerance. More specifically, during the pre-diagnosis stage.

I would be very grateful for anyone to share their thoughts to my questions below:

1) How did the symptoms of gluten intolerance affect your day-to-day life?

2) How did you become aware of your intolerance to gluten or celiac disease?

3) What were the 3 things you hated most about your intolerance?

4) What are your top 3 obstacles or road blocks you've have had to deal with because of your gluten allergy?

5) What do you wish you had known during your search for a cause of your symptoms due to your gluten allergy? What could have made it easier?

6) How did you learn to manage to your gluten intolerance? Is there anything you wish existed to help you manage it?

Thanks for your responses, I'd appreciate any and all responses even if you only feel like answering one of the questions above. This will all be very beneficial to the report I'm putting together, and I'd be more than happy to share it with the board.

- CDGuy

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Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


1) How did the symptoms of gluten intolerance affect your day-to-day life?

I was pretty sick most days. Very bloated, gassy, lots of irregular bowel movements, cramps, and brain fog.

2) How did you become aware of your intolerance to gluten or celiac disease?

I went to the doctor, did a bunch of tests, tried a bunch of diets, had no luck. Then read on an IBS forum about Celiac Disease, asked my doctor to check for that. Bloodwork came back positive, so we did a biopsy, which showed inflammation of my small intestine.

3) What were the 3 things you hated most about your intolerance?

Before diagnosis, I would say I hated having cramps, losing my job for being sick, and feeling like I smelled all the time (gas).

4) What are your top 3 obstacles or road blocks you've have had to deal with because of your gluten allergy?

Ignorant coworkers and family members, living in a semi-gluten free house (husband eats gluten), and REALLY missing pizza!

5) What do you wish you had known during your search for a cause of your symptoms due to your gluten allergy? What could have made it easier?

A doctor who knew what he was doing, instead of guessing, and trying me out on different diets/medications for months with no success.

6) How did you learn to manage to your gluten intolerance? Is there anything you wish existed to help you manage it?

I had so much help from a lady I met at my local Celiac group. She teaches a cooking class, and had me over a few times to "learn" to cook again. She also introduced me to her cookbook, which has saved my life with so many successful recipes! (website is eatingglutenfree.com)

Hope this helps! Good luck w/ the report.


Sweetfudge

Born and raised in Portland, OR; Currently living in Provo, UT

Gluten-free since June 2006

Also living with Hypoglycemia since 1991

Dairy-free for good since summer 2008

Started IBS diet and probiotics at GI's recommendation - Fall 2008

Also avoiding: potatoes, beans, crucifers, popcorn, most red meat, coconut milk :(

Started eating a Paleo diet Spring 2011. Love it!

The grass is always greener where you water it.

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Hi,

I'm doing some research for a report and just wanted to get a general sense of what it is like to deal with Gluten intolerance. More specifically, during the pre-diagnosis stage.

I would be very grateful for anyone to share their thoughts to my questions below:

1) How did the symptoms of gluten intolerance affect your day-to-day life?

2) How did you become aware of your intolerance to gluten or celiac disease?

3) What were the 3 things you hated most about your intolerance?

4) What are your top 3 obstacles or road blocks you've have had to deal with because of your gluten allergy?

5) What do you wish you had known during your search for a cause of your symptoms due to your gluten allergy? What could have made it easier?

6) How did you learn to manage to your gluten intolerance? Is there anything you wish existed to help you manage it?

Thanks for your responses, I'd appreciate any and all responses even if you only feel like answering one of the questions above. This will all be very beneficial to the report I'm putting together, and I'd be more than happy to share it with the board.

- CDGuy

1. Gassiness, bloating, passing gas, constipation/diarrhea

2. Have a niece who is coeliac, sister who is gluten intolerant, decided to go gluten free

3. Passing gas all the time, worried about finding toilets, fainting from the gas pressure when I was constipated (a bit embarrassing when you are out in public).

4. Finding restaurants that serve gluten free food, attending catered functions, finding all the ingredients for the recipes in my cookbooks

5. Knowledgeable physicians (I had to self-diagnose after years of IBS "diagnoses") It would have been nice to have some support, although this forum is great for that.

6. The hardest part was figuring out what was making me itch and break out in rashes afterwards; had to do an elimination diet to find out it was soy.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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Sweetfudge -

Miss Pizza no more!!! Pier 49 Pizza in Salt Lake City (248 South Main Street) has a wheat free gluten free crust you can choose. I had it for the first time Friday night and its EXCELLENT! Well worth the drive to Salt Lake for pizza. That is the only Pier 49 Pizza Company that serves the gluten-free crust at this time.


Britt

SLC / Utah

Gluten free since May 23rd, 2005

Positive Bloodwork Positive Biopsy

For I know the plans I have for you declares the Lord. They are plans of good and not of evil to give you a future and a hope. Jeremiah 29:11</span>

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1. I had various stomach symptoms including bloating, alternating between diarrhea and constipation, extremely bad period pain, chemical sensitivity, but the most debilitating was the constant fatigue.

2. After going to doctor after doctor over the years I eventually started doing some internet research and asked some probing questions about my family history, I then went to my doctor and demanded tests and the rest is history ;)

3. The three things that annoy me most about my intolerance are a) the fact that gluten is EVERYWHERE and very difficult to avoid B) It is almost impossible to eat out which I really used to enjoy c) I hate being an inconvenience to my family and friends.

4. My mother... very difficult woman who enjoys taunting me with gluten filled foods. Oh and work functions are very difficult and travel is tough (gluten free meal options on flights and finding gluten free foods in a foreign country).

5. Just knowing that my symptoms could have pointed to celiac disease, my doctors were all so useless and mostly told me that there was nothing wrong with me or that I just had a virus that would pass with time. I wish I ha known to ask to be tested for celiac disease so that I would not have wasted so much time and money on useless doctors with no answers.

6. I have been plodding along just fine with the variety of gluten-free food available in Australia. The only thing that would make things easier is if there were more places to eat that had good gluten-free food. Oh and it would make life a lot easier if there was more awareness of celiac disease in the wider community as well as in the medical community.


Australian

Gluten Free Since mid March 2008

As well as gluten I can't eat: cantaloupe, honeydew, dairy and most nuts and seeds. I also seem to have a problem with a lot of fruits and vegetables but only when they are raw.

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Hi,

I'm doing some research for a report and just wanted to get a general sense of what it is like to deal with Gluten intolerance. More specifically, during the pre-diagnosis stage.

I would be very grateful for anyone to share their thoughts to my questions below:

1) How did the symptoms of gluten intolerance affect your day-to-day life?

2) How did you become aware of your intolerance to gluten or celiac disease?

3) What were the 3 things you hated most about your intolerance?

4) What are your top 3 obstacles or road blocks you've have had to deal with because of your gluten allergy?

5) What do you wish you had known during your search for a cause of your symptoms due to your gluten allergy? What could have made it easier?

6) How did you learn to manage to your gluten intolerance? Is there anything you wish existed to help you manage it?

Thanks for your responses, I'd appreciate any and all responses even if you only feel like answering one of the questions above. This will all be very beneficial to the report I'm putting together, and I'd be more than happy to share it with the board.

- CDGuy

1. Since my early 20's, I was running on empty all the time. I was always tired, slept at least 10 hours, but still felt tired, I'd wake each morning feeling like I got hit by a truck. Numerous allergies that were out of control that caused sinus infections. I was miserable. I could only hold on to a part time job, I couldn't keep up with basic housework, which caused some strain on my marriage. Then when I was 32 I got digestive symptoms, alternating diarhea and constipation, and a horrible, stabbing stomach pain.

2. Years ago I actually read an article about a woman with celiac disease. Her description of her fatigue really rang a bell, but I had no digestive symptoms at the time, so I didn't persue it. Years later, I went on South Beach Diet. I felt so good during the phase where you couldn't have refined carbs. Then when I started eating whole wheat products, I felt worse than before I went on the diet. That's when I started demanding tests and experimenting with the diet myself. Celaic tests were negative, but a wheat allergy was discovered. Based on my woeful tale, the allergist told me it would be wise to avoid all gluten.

3. A. Being treated as a hypochondriac by most doctors. I did have all the positive airborne allergy tests, but doctors always insisted that "your allergies can't be as bad as you say." I had "poor symptom tolerance" or I wasn't following instructions, taking my meds as ordered. A rheumatologist wanted to give me an antidepresant and anti-anxiety meds. No one wanted to dig deep and investigate further. I had to bring my husband with me to demand the food allergy testing.

B. Not being able to keep up with life. Like I said above, my marriage was strained because I couldn't keep up with basic household tasks. I never felt like doing anything, I was always so exhusted.

C. Feeling alone--I felt like I was the only one who felt this way. Everyone else could function normally, why couldn't I?

4. A. Getting a correct diagnosis (see crappy doctors above :) ) I still technically don't have a celiac diagnosis. But I know I was on my to that "gold standard" I feel a little robbed of my '20s because so much time was wasted not knowing what was wrong with me.

B. Learning how to cook. I didn't really cook before I went gluten-free. It has been very challenging for me, though I am somewhat enjoying it. Still, it is hard to resist the urge to "just go out"

C. Eating out. I hate asking for the special menus and making all those special requests. I'm just shy and timid about it. DH iss good about speaking up when I don't LOL.

5. I wish I had heard about celiac/gluten intolerance sooner. And I wish I understood sooner that my symptoms were not normal allergy symptoms, as I would've started looking for an answer on my own sooner. What would've made it easier? Broken record, but the doctors. Even if it ended up that I was still the one who discovered it, I would've appreciated being taken seriously, and not dismissed as a hypochondriac. I can only name 1 out of over a dozen who I know never doubted that I was truly ill. I think maybe if I hadn't moved, he would've eventually figured it out.

6. I've read great books, and the support on this forum has been wonderful. I really haven't had that difficult of a time adjusting to the diet, because the improvement in my health has been so dramatic. I do wish things were easier at restaurants.


Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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Sweetfudge -

Miss Pizza no more!!! Pier 49 Pizza in Salt Lake City (248 South Main Street) has a wheat free gluten free crust you can choose. I had it for the first time Friday night and its EXCELLENT! Well worth the drive to Salt Lake for pizza. That is the only Pier 49 Pizza Company that serves the gluten-free crust at this time.

Sweetfudge,

You can also try Amy's frozen Gluten-Free pizza. Not exactly restaurant quality, but it can fill the void. I recently found a restaurant locally that serves Gluten-Free pizza, check out glutenfreeregistry.com - has helped me out a good few times!


redgf

Diagnosed 7 yrs after "active" celiac symptoms started, brought on by premature birth of first child. Doctor diagnosed '06 and said have a good day, we have been on a learning curve since! Perfectly healthy since going gluten free, am now extremely sensitive to gluten.

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Hi,

I'm doing some research for a report and just wanted to get a general sense of what it is like to deal with Gluten intolerance. More specifically, during the pre-diagnosis stage.

I would be very grateful for anyone to share their thoughts to my questions below:

1) How did the symptoms of gluten intolerance affect your day-to-day life?

2) How did you become aware of your intolerance to gluten or celiac disease?

3) What were the 3 things you hated most about your intolerance?

4) What are your top 3 obstacles or road blocks you've have had to deal with because of your gluten allergy?

5) What do you wish you had known during your search for a cause of your symptoms due to your gluten allergy? What could have made it easier?

6) How did you learn to manage to your gluten intolerance? Is there anything you wish existed to help you manage it?

Thanks for your responses, I'd appreciate any and all responses even if you only feel like answering one of the questions above. This will all be very beneficial to the report I'm putting together, and I'd be more than happy to share it with the board.

- CDGuy

1. I felt horrible everyday. Missed tons of school. It was difficult to deal with anything such as car rides, sleepovers, because I didn't know what to avoid. I ate pretzels constantly because they made me feel better at the moment. Little did I know that the pretzels were what was making me sick the next day which is why I would eat even more of them. Vicious cycle...

2. I got a colonoscopy and endoscopy. The doctors were suspicious and ordered a blood test. Blood test came back positive.

3. At first I wasn't totally aware of the importance of avoiding gluten. It didn't really hit me that it was forever. I still don't think it has...

4. I still don't feel better. I've had tons of tests but doctors can't find anything wrong. I think if it was just avoiding gluten I could do it easily but because I still feel horrible everyday, it's become a much bigger ordeal.

5. If more doctors were aware of celiac disease. Because it isn't very popular and not thought of right away, the doctors kept telling me to eat very simple bland foods like bread and pasta. They didn't realize until later that that was making me even worse.

6. I've been experimenting a lot more with new recipes. I think that's helped because it's sort of opened up a whole new world. I wish there were more gluten-free grocery stores. It's such a hassle for me and my family to go to 3 different health food stores just to get simple things like breads, pastas and flours.

Cool report. I'd be interested in reading it when it's done. =)


symptoms-october 5th, 2007

negative endoscopy and colonoscopy-december 2007

positive bloodwork-january 2008

diagnosed celiac-january 8, 2008

"At the end of the day, the fact that we're still here is reason enough to celebrate."

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1) How did the symptoms of gluten intolerance affect your day-to-day life?

I was exhausted all the time, I'd get migraines that would knock me out for days at a time, my stomach was always upset, I was gassy to the point of public embarrassment. I had huge dark circles under my eyes that never went away. I couldn't gain weight. I was severely depressed, and suffered from constant brain fog that made doing my job and everyday tasks very difficult. My joints and muscles hurt constantly.

2) How did you become aware of your intolerance to gluten or celiac disease? About two years into us trying to figure out what was wrong with me (there were several years before that of just dealing with being sick) I read an article in Fitness magazine and asked to be tested for Celiac Disease. It came back positive.

3) What were the 3 things you hated most about your intolerance? Not having the ease of eating out anywhere. Having to explain to everyone I ever had to eat around, over and over and over again. Having to be constantly aware of everything that goes into my mouth.

4) What are your top 3 obstacles or road blocks you've have had to deal with because of your gluten allergy?

People not respecting or understanding it and glutening me through negligence. Eating out with friends. I can't think of a third, I've adapted rather well.

5) What do you wish you had known during your search for a cause of your symptoms due to your gluten allergy? What could have made it easier? I wish I had know what Celiac was. I had never heard of it before that point.

6) How did you learn to manage to your gluten intolerance? Is there anything you wish existed to help you manage it? Luckily I like to cook and enjoy a challenge in the kitchen, and I live on the west coast. I got dining cards, and am hyper vigilant when I eat out. Other than lengthly discussions with waiters and having to go to multiple stores to get everything I need to cook with, I am not that much different than any of my friends. I choose to accept it as a fact of life, and not see it as a burden after my initial two weeks of moping because I couldn't eat junk food. I eat whole foods, veggies and meat. My diet is healthier than its ever been.


Positive Bloodwork 7/8/05

Inconclusive Biopsy 7/20/05

gluten-free since 7/23/05

Never felt better.

"So here's us, on the raggedy edge, come a day when there won't be room for naughty men like us to slip about at all. - Malcolm Reynolds"

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1) How did the symptoms of gluten intolerance affect your day-to-day life?

I had severe GI distress with excruciatingly painful bowel movements, horrible bloating and gas that made me feel diseased and always with the threat of public embarrassment, painful joints and sacrum, migraine headaches that would last for days, bad menstrual symptoms and brain fog, an itchy rash with a mirrored effect, mouth sores, twitching eyes, and jumbled or mispronounced words that were very clear in my head.

2) How did you become aware of your intolerance to gluten or celiac disease?

I made the connection between my GI distress and whole wheat products, and my initial research on wheat allergies led me to Celiac Disease. This website has helped me tremendously.

3) What were the 3 things you hated most about your intolerance?

The horrible bloating and gas made me feel unsociable, and my brain fog and mispronounced words frustrated and humiliated me.

4) What are your top 3 obstacles or road blocks you've have had to deal with because of your gluten allergy?

Getting proper medical attention, eating out with people and casual socializing, and having people understand that a gluten intolerance is serious.

5) What do you wish you had known during your search for a cause of your symptoms due to your gluten allergy? What could have made it easier? I wish I had known more about the prevalence of hidden wheat products in our food, and the recognition that wheat acts as a toxin for some, the same way fats and cholesterol are more of a threat to others.

6) How did you learn to manage to your gluten intolerance? Is there anything you wish existed to help you manage it?

I'm still learning how to manage it. I wish there were more bars and restaurants that carried authentic gluten-free products like beer and pizza, so that I can enjoy a relaxed, simple night out like everyone else. I really miss going out for pizza and beer with friends. But, I'm so glad those items exist on their own so that I can have them at home.


-First overt but unrecognized symptoms after reintroducing dairy and wheat to my diet after a 2-month absence, 2002.

-First appearance of chronic aphthous stomatiti, 2002.

-Giardia infection and treatment with albenzole, 2005.

-Persistent symptoms and treated for Giardia again with Flagyl twice (without testing), 2006.

-Dx milk allergy from a blood test, April 2007.

-Also presented for anemia, high white blood cell count, and candida in the same test. Dx IBS, April 2007.

-Response to diet and self-diagnosis through overwhelming symptoms and possible genetic link (hypothyroidism, fibromyalgia runs in the family), April 2008

-Currently learning to go gluten-free (April 2008), and coping with new sensitivities.

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1) How did the symptoms of gluten intolerance affect your day-to-day life? I never had a problem until I had a blood test and my iron count was low.

2) How did you become aware of your intolerance to gluten or celiac disease? After waiting a year between blood tests (because I felt fine) the count was still low so I saw a gastroenterologist. The blood test and endoscopy were positive for celiac.

3) What were the 3 things you hated most about your intolerance? Not being able to just pick up anything and eat it (that's #1 #2 and #3)

4) What are your top 3 obstacles or road blocks you've have had to deal with because of your gluten allergy? None so far except what's already been mentioned but it's only been 3 months

5) What do you wish you had known during your search for a cause of your symptoms due to your gluten allergy? What could have made it easier? That the first GI doctor I saw in 2006 who did an endoscopy but did not do a biopsy although I don't know why. Had I not waited another year I would have known earlier but I didn't have the usual gastric symptoms to make me seek help.

6) How did you learn to manage to your gluten intolerance? Is there anything you wish existed to help you manage it? A pill would be nice. I've found pasta, bread and beer that I can eat/drink so life is good.

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How did the symptoms of gluten intolerance affect your day-to-day life?

Fatigue, Insomnia, joint pains, IBS, bloating and gas, Candida, etc., etc. Dragging myself about and seeming to spend half my life on the toilet and the other half in bed.

2) How did you become aware of your intolerance to gluten or celiac disease?

The wonderful world of the Internet! Certainly not via my doctor or the hospital! I just put in one symptom and there it was - if it was that easy for me, why not for the Medical Profession???

3) What were the 3 things you hated most about your intolerance?

Sorry, not sure if you mean before gluten-free or after, but before was the lack of a decent quality of life, the lack of energy and motivation and the extreme unsociability of the IBS. Since being gluten-free, none really except the fact that the blasted stuff is figuratively rammed down my throat every time I go into a store!

4) What are your top 3 obstacles or road blocks you've have had to deal with because of your gluten allergy?

None again. My family are very supportive - my husband is doing it with me, bless him.

5) What do you wish you had known during your search for a cause of your symptoms due to your gluten allergy? What could have made it easier?

I wish that doctors were far better informed and clued-up on gluten intolerance/Celiac. I wish my local surgery and the hospital had written information I could have been given. I wish I had known about Celiac disease 10 years ago - I might have saved my beautiful Mum and Dad.

6) How did you learn to manage to your gluten intolerance? Is there anything you wish existed to help you manage it?

I looked up as much info as I could, I joined Celiac.com, I bought gluten-free recipe books and spoke to others. Fortunately I was already pretty clued-up on nutrition and healthy eating which helped a lot. I wish that this system was a lot more informed and understanding of the problem and there was a lot more choice for those who are already limited in their food options.


Ali - 50 - struggled with what I now know to be GI symptoms and poor carb digestion for at least 35 years! Diabetic type II (1997). Mother undx Celiac - lifelong diabetic Type 1 & anemic (plus 1 stillborn and 10 miscarriages after me). Father definitely very GI.

Stopped gluten & dairy, Jan 08, but still other issues so dropped most carbs and sugar and have been following the Specific Carb Diet (SCD) since March 08. Recovery slow but steady and I can now eat a much broader range of foods especially raw which are good for my digestion and boost my energy level.

Not getting better? Try the SCD - it might just change your life.........

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