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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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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.

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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.

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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.

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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.

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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.

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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!

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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. =)

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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.

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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.

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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.

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    • OK good to know. Thanks for the tip
    • This is an old thread but I just need to get this out of my system! I am just so fed up with how every caregiver has been dealing with me case. My enzymes have been abnormal and my doc continuously asks me if I'm binge drinking - I literally haven't had a sip of alcohol in 2 years. Never been a heavy drinker.  She also tells me that all of my troubling neurological symptoms - sensory hypersensitivity, tinnitus, jaw/pain, headaches, fatigue, teeth grinding, nightmares, and EPILEPSY are "all in my head." ??? When my GI symptoms first started, she tried pushing acid reflux medications on me, even though Ive never dealt with heartburn. She was confused and aggressively asked, "Then what do you want!???"... um, to figure out the root of my issues? Some diagnostics? Gosh... When I told her my symptoms had decreased on a low gluten diet and I was interested in being tested for celiac, she asked me "why bother? if you're feeling better, just eat less gluten" - not understanding the value of a formal diagnosis.   I just wish I had some other disease that was more medically recognized and understood. Its so demeaning, and I try to see my doctors as little as possible now. I do my own research on PubMED and google scholar. And I don't even think I've had it the worst- I'm totally appalled by all of the crap I've read on this thread. Anyways, I'm done ranting.
    • Has your Dr mention Microscopic Colitis at all.  You mentioned taking PPI's.  I took them for over a year - 2 morning and 2 night.  I think that's how I ended up with Microscopic Colitis.  I don't think I have Celiac disease but do think I am very sensitive to gluten.  My GI dr. told me to eat whatever I want , but have learned from research, partly from microscopiccolitis.org that almost everyone with MC is sensitive to gluten and most to dairy and some to soy.  I know some on this site don't agree with some of what is said on that site, but they are really good people who want to help.  Just said all that to say, maybe you should ask your GI if you could have MC.  Hope you get it all figured out.  I know the frustration.  It can take over your life.
    • Yeah their shreds raw are nasty but melted in recipes they are decent, they make 2 different shreds a cutting board super stretchy version and a plain, they also sell that mac and cheese sauce by itself for use in other recipes. https://store.veganessentials.com/daiya-deluxe-cheeze-sauces-p5079.aspx The company makes a decent cream cheese and cheese cake also if you can stomach the xantham gum.

      I am going to copy and paste something from another thread thread and link you a list of alternatives. " Violife...makes vegan Feta...I have been dying to try their cheeses and hear good reviews. They also make other cheeses.
      https://store.veganessentials.com/just-like-feta-by-violife-p5342.aspx
      Kite Hill makes great Ricotta, the truffle cheese from them....yeah you will eat the whole thing in one sitting stuff is addictive,  decent cream cheese if you can stomach xantham gum (only one they have that has it).
      
      Miyoko Creamery makes great mozzarella and even a smoked version I hear they make great cream cheese and wheels also but I have not gotten any. Leaf Cuisines makes the best smoked gouda, and a strong garlic and herb cheese

      Tree line Scallion is glorious, and their garlic and herb is milder then Leaf cuisines but decent flavor...the peppered is meh.

      Daiya Blocks flavor wise are better then the shreds, the jalapeno Havarti is one my my dads favorites and he loves their cheddar...again xantham gum so not for me. Their cream cheese is decent but noticeable artificial. Their shreds come in 2 formulations a high melt version (cutting block) and standard I they taste better cooked into recieps over raw.
      Daiya recently started offering cheese sauces...like the stuff they used to sell with their mac&cheese but just the sauce.

      Lissanatti makes the best "raw" shreds for cheddar and mozz.

      Parma makes great Parmesan sub...the better then bacon one is SUPER addicting.

      I heard good reviews on so delicious cheese....but corn makes makes me not even able to do a chew and spit taste without an allergic reaction.

      I recently found a creamery you can contact about getting cheeses...I found their sauce on a site and got it.....great Alfredo sauce.
      http://www.parmelacreamery.com/
      https://www.luckyvitamin.com/m-28232-parmela-creamery
        Dairy Free cheese products  NOTE CHECK FOR GLUTEN FREE ON THEM
      https://store.veganessentials.com/cheese-alternatives-c6.aspx

      Other gluten free options for everything else  
    • Dairy is dairy on a elimination diet, your trying to void all the proteins, lactose, whey, casein, and the enzymes, hormones, pus, etc that could be setting off issues. I would even say wait at first on the dairy free alts. IF anything go with the fewest ingredients ones without starches or gums like the plain kite hills, tree line, leaf cuisines and miyoko. And completely sideline the crazy ones like daiya, or the blends of more then 2-4 ingredients.
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