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Coping With Celiac Disease Emotionally


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#16 kbtoyssni

 
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Posted 15 October 2006 - 11:28 AM

I'm a working mom with two little boys and a very stressful job (middle school teacher). I barely have time to grade papers and do my laundry...how can I justify spending more time checking labels, let alone spending money on special groceries? Besides this, food=love in my family. We're Italian (HELLO CARBS!) and dinner is very important. Now I'm inconveniencing everyone with my special requirements. Some people are kind; some act as though you're making it up for attention. One of my co-workers actually said, "I think Celiac is the new fad disease...like Chronic Fatigue." Isn't that lovely?

Anyway, I need to get honest with myself. It sucks to have a special diet, but there are so many people who have to take meds their whole lives to regulate their conditions. I know that I feel better when I'm diligent and I pay for it when I cheat. I am SO glad that I found this board because dealing with this disease alone really SUCKS. I hope that you make peace with your diagnosis and feel better on a gluten-free diet.

Thanks for hearing me out...I look forward to checking in here frequently for support.


What you really don't have time for is being sick all the time. Your sons and your kids at school need you - they need you to be at 100% for them because they're relying on you. You're not inconveniencing everyone with your "special" diet. You will inconvenience them if you purposely eat gluten and get sick. You can take the time you usually waste being sick and use it to read labels instead. It does take a lot of time in the beginning to figure everything out, but things get much quicker. Now I don't spend any more time grocery shopping than I did pre-gluten-free.

I always say that I still eat everything I used to, I just have to be careful about what brands I get and make a few substitutes for things like bread, cakes, pasta, etc.
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Gluten-Free since September 15, 2005.
Peanut-Free since July 2006.

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#17 wifeandmomofceliac

 
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Posted 16 October 2006 - 06:17 AM

Thank you all for your encouragement and support.

Yesterday was a nightmare, I feel weak and tired to begin with but I went grocery shopping and by the time I got thru reading every single label on every product I bought I was exhausted and a wreck physically and emotionally and at times even wanted to cry...I know this pity party will be over some day but right now it is in full blown hats and horns party mode. I have never spent so much time in a grocery store in my life. My husband of 45 years is a doll, he is willing to help me cook, eat whatever I can eat and even re-reads the labels for me in case I missed something on the first reading, good thing I kept him all these years.

I am really having a problem with what to eat for breakfast...I don't want to find out that my cholesterol is sky high in a few months, so even though I love them, I can't eat eggs every morning as a easy, quick breakfast. I have never eaten grits in my life, just the thought of them is unpleasant, but I guess you have to do what you have to do...or maybe one of you angels out there will tell me what you eat for breakfast. Sissy


I understand the time consuming agony of reading label after label, and being discouraged by the number of things that are not gluten-free. Over time, you will know which brands are probably okay (they do change ingredients from time to time, so keep checking). Also, I know I was SOOO excited when I went in to a store that puts a Gluten-Free label on the shelf for everything that is gluten free. If you have a Wild Oats store near you, check it out. This had been really great for when family or friends as what they can keep at their house for when we visit. They seem to prefer a simple to shop at store than a list from me, detailed down to brand and flavor. So now there are always snacks available at gramma's and friends' houses. The store is not perfect, and I have found a few things that were mismarked, but it greatly reduces the number of labels to read. If they do not have it marked, I don't bother to check it, and assume it is not okay. But if it is labeled as gluten-free it is probably okay. They even have gluten-free island in the store full of mixes, cookies (yummie ones) and breakfast bars (taste just like fig newtons - and I still know what those taste like since as my log-on name indicates, I am not actually celiac), and loads of cereals.

As far as breakfast, I saw some great posts. My family loves gluten-free pancakes and muffins. They are so good that we all eat the same thing, and everybody is happy. (I have one daughter that is celiac, and one that is not. Sometimes challenging to cook so both enjoy. Then again, this is true for any parent with more than one kid.) Also, our favorite gluten-free cereal is Rice Crunch-ems. Taste and look like Rice Chex, but no barley malt added. And not too sugary sweet for the grown-up tastes. Kids like the Puffins cereals. I often find the Rice Crunch-em in the natural foods section of the regular grocery store. And, if you talk to the grocery store manager, you can often get them to carry your favorite gluten-free items. Mine now carries Kinnikinnick bagels and breads. Yippee!
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#18 Gamecreature

 
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Posted 16 October 2006 - 08:27 AM

Kids like the Puffins cereals. I often find the Rice Crunch-em in the natural foods section of the regular grocery store.


I hasten to point put that only the "Honey Rice" variety of Puffins cereal is gluten free. Some stores accidentally put all varieties in the gluten-free section.
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It's not about winning, it's about having fun while you play. Gamecreature

#19 wifeandmomofceliac

 
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Posted 16 October 2006 - 12:49 PM

I hasten to point put that only the "Honey Rice" variety of Puffins cereal is gluten free. Some stores accidentally put all varieties in the gluten-free section.

Thanks for pointing that out. I actually did not know of any other variety, but am sure at some point the wrong one would have wound up in my shopping cart. I appreciate the heads up.
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#20 booboo

 
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Posted 16 October 2006 - 01:03 PM

Sissy, I'm new too. I've found EnviroKids breakfast bars are pretty good. Like eating a rice krispie treat for breakfast in the car on my way to work. Their cereal isn't too bad, either. I was diagnosed 4 months ago, and I'm a wreck with it. Haven't cheated either. Still having trouble with sleeping, but no more night sweats. I'm blessed with friends who care, but the holidays will be scary food-wise.
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#21 Rox

 
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Posted 16 October 2006 - 04:20 PM

A couple of rice cakes with Nutella is my new favorite quick breakfast.
My local grocery store (Safeway - I'm in Canada) carries Natures Path Honey'd Corn flakes which are great (not too sweet). Gotta love things that say gluten-free right on the box (yahoo!).
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#22 Janiejerry

 
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Posted 16 October 2006 - 04:29 PM

Hey I'd forgotten about the night sweats! The way I try to look at things, is they could be so much worse. My husband has had a kidney transplant, been blind and regained vision, had a pancreas transplant that rejected 2 years later and been through a virtual hell. Once he became stable I became very ill. To know I can keep myself healthy without medications is really great. I certainly do have my down times when I feel sorry for myself but I try to keep positive. The worst for me was terrible back pain, foggy head, tired, and awful neuropathy issues. I was really starting to think I was crazy. Thank goodness my family Dr kept looking for answers. Never heard of Celiac before and I also get the people who have said they believe I could eat some wheat. Ok whatever. Life is short and I want to enjoy it:) Ok so I can't eat KFC, no one should eat it anyway :D
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#23 bridgergirl13

 
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Posted 16 October 2006 - 05:17 PM

What you really don't have time for is being sick all the time. Your sons and your kids at school need you - they need you to be at 100% for them because they're relying on you. You're not inconveniencing everyone with your "special" diet. You will inconvenience them if you purposely eat gluten and get sick. You can take the time you usually waste being sick and use it to read labels instead. It does take a lot of time in the beginning to figure everything out, but things get much quicker. Now I don't spend any more time grocery shopping than I did pre-gluten-free.

I always say that I still eat everything I used to, I just have to be careful about what brands I get and make a few substitutes for things like bread, cakes, pasta, etc.



You are so right. Thanks for taking the time to reply to me. I'm really dedicated to getting this diet right and being healthy...not just for me, but for everyone around me. I guess the people who make me feel inconvenient aren't really worth the effort it takes me to worry about what they think, huh?

I'm really enjoying all of the stick-with-it tips and pep talk. Keep it coming!
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#24 Mango04

 
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Posted 16 October 2006 - 05:39 PM

For anyone who finds label reading daunting, it might help to fill your grocery cart with as many single- ingredient foods as possible. If you have no other intolerances, you can literally go crazy with unlimited amounts of fruit, vegetables, meats, eggs, dairy, rice, beans, oils fresh herbs etc. etc. etc. The options with these ingredients are endless, even if you're not a master chef. :) That's not to mention the fact that it's healthier to eat this way, it's less stressful (how horrible is it to try and deciper a label that includes 25 words we can't even pronounce???) and it will save you time and energy (maybe I'm weird but I find buying fresh organic foods to be energizing :rolleyes:) Farmer's markets, co-ops and health food stores are good places to find new and interesting varieties of produce and fresh meats (and it's not necessarily more expensive to shop at these places if you're buying single ingredient items). Just an idea....
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"Let food be thy medicine, and let thy medicine be food." - Hippocrates

#25 debmidge

 
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Posted 17 October 2006 - 01:51 AM

We get the cold box cereal items from Whole Foods; usually buy Erewhon gluten-free, Nature's Path adn Glutino Brands; they make corn flakes, and rise crips and circles that resemble cheerios iwth apple & cinnamon. Yes do read the boxes, as they also make gluten based cereals too; so don't get them mixed up.
Van's has good gluten-free frozen waffles too. Gluten Free pantry makes pancake mix and you mix up just like ole' Aunt Jemina brand did.

Then there's Cream of Rice cereal by Nabisco brand.
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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 2006
It 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

#26 pixiegirl

 
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Posted 17 October 2006 - 03:10 AM

You mentioned that you like to take cruises... just so you know I've cruised a number of times since going gluten-free and have had no problem. I've taken royal caribbean and Windstar with no problems.

Susan
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#27 CMCM

 
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Posted 27 October 2006 - 09:18 PM

Hi Sissy.....I'm 57 and only just got diagnosed last January via Enterolab. I had given up on the regular medical establishment. My mom was diagnosed as celiac 40 years ago....at a point where doctors knew very little and she literally almost died of starvation (malabsorption, destroyed villi) before one sharp, knowledgeable doctor figured it out and tested her properly. So I had knowledge of celiac disease from my teen years on, but because my own symptoms didn't mirror those of my mom (she got very thin, I didn't, she got violently ill from even the tiniest bit of gluten, but I didn't), I never thought my own particular digestive woes could be celiac. In addition, I am casein intolerant and that was probably made worse by the gluten problem.

What I have learned the last year is that by eliminating gluten and dairy, I feel my best. Right after my diagnosis, I went nuts trying all the gluten free bakery goods, and those did not agree with me either. I also realized that certain foods didn't work....for example, lots of cooked tomatoes such as in spaghetti sauce would give me horrendous heartburn. Limited fresh tomatoes didn't. I learned that I can only tolerate quite small meals, and that I do better with 5 or 6 small meals per day. I feel better with more protein. I really can't eat starches (no more potatoes!!). I just have to be a careful eater, that's all.

I also eat a fairly limited diet, mostly plain one-ingredient foods or combinations I make for myself. I don't read labels all that much because I don't buy that sort of food much. It really does get easier, I think. Never fun, but easier.
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CAROLE

-------------
Enterolab 1/2006
IgA & tTg Positive
DQ2-0201 (celiac) and DQ1-0604 (gluten)
Casein IgA positive
Mom has 2 celiac genes
Both kids have a celiac gene.
Lots of celiac disease in my family, both sides.

#28 Sissy

 
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Posted 28 October 2006 - 09:40 AM

I think that I am beginning to relax a little and calm down after those first few weeks after learning I had Celiac disease. I am a true believer that natural whole fresh foods are best but I am still reading labels to replace all my condiments and things like that. I've cleaned out my cupboards and given away my glutenated foods, so my cupboards are now gluten free. My husband is more than willing to eat just as I do with a few small exceptions, so that makes life easier too. I have recovered from a week of depression, horrible pain and big D from an accidental glutening at Red Lobster from their "sour cream" and actually even ate lunch out at a local Mexican restaurant...beef fajitas with corn tortillas, beans and chips with pico de gallo...with no bad after effects. I wanted to post so I could tell you that I am doing better... I knew that my pity party would end someday...I struggle day to day to keep my spirits up and to do everything in my power to see that I gain my health back and have a good attitude about being gluten-free.

Last Thursday I faxed a letter to Princess Cruise line to request their gluten free menu option for our 7 day cruise in February. This will be my first cruise since my dx. This is a mini trial as we have a 31 day cruise from Sydney to LA booked for 4/08 and I have been really worried about what I could eat and what if I got sick while I was on the ship for that long. I was told by someone who has a sister with Celiacs that has cruised with Princess that they serve delicious gluten free meals, pastries and desserts...that would be terrific, but my main concern is that I don't get sick like I have on all my past cruises. I would eat pasta, pastries, rolls with dinner and then make a bee line to the ladies room after each meal, I always thought it was just a reaction to the different foods and also had heard so much about viruses on ships. I took a lot of immodium with me!

Last month when I was feeling as though I was going to die I put all my symptoms together and it just came to me...these are the exact symptoms that my aunt had several years ago when she was diagnosed with Celiac disease. (it was one of those lightbulb moments) When I did a little research I learned that it was genetically handed down, I had no idea. My doctor is very familiar with Celiacs which was a huge surprise because I live in a very small rural Oklahoma town, but she has several Celiac patients and has been wonderful and helpful to me. Sissy
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#29 Aerin328

 
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Posted 28 October 2006 - 10:30 AM

Sissy,
Don't worry, things get easier! After reading labels for a few months it becomes second nature. The bigger problem for me anyway was the fact that certain symptoms (especially brain fog, malaise, etc. in my case) can be quite tenacious. All symptoms definitely improve gluten-free, but it takes TIME. I've been gluten free not quite 4 months now and I feel a huge difference!... but I still have a ways to go. I've been told by others on this forum complete healing takes 1-2 full years. (In fact, Enterolab states on their site that the antibodies your body produces when you eat gluten stay in the system for about 1 year!) So, for now be patient, and don't be discouraged if you're not miraculously healed over night. You WILL feel better as time passes, and soon you will have no doubt going gluten-free was worth it!
Christian
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Gluten free since 7/6/06. :)

Enterolab Results positive 8/24/06:
Antigliadin IgA 33 (Normal Range <10 Units)
Antitissue Transglutaminase IgA 16 Units (Normal Range <10 Units)
Anti-casein (cow’s milk) IgA antibody 21 Units (Normal Range <10 Units)
Serologic equivalent: HLA-DQ 3,1 (Subtype 8,5)

Blood test somewhat positive 7/6/06:
Antigliadin IgG (only) 57 (Normal range <20 units)

"Perspective is Reality"

#30 Sissy

 
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Posted 28 October 2006 - 02:04 PM

I learn something new about this disease every day. It is so interesting and helpful to me to know that the antibodies can remain in your system for a year. It makes sense that you can have bad days even after starting a gluten-free lifestyle. Not that I want to lower my expectations of feeling well, but at least I will be more hopeful that on days that I am not feeling well that this too shall pass. Thank you. Sissy
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