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Coping With Celiac Disease Emotionally
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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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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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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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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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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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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

Sissy, I can totally feel your pain, I've been there. At first walking through a grocery store is horrible because there are so many things you feel like you can't eat. I can't tell you how many times I walked out of a store and sat in my car wanting to just cry. IT DOES GET BETTER!!! There are lots of regular brands out there that are ok for us to eat and this site is a WONDERFUL resource. I am still learning of things I never knew were safe until now. If you like cereal for breakfast EnviroKidz is the brand I prefer...Amazon Crunch to be specific. They taste like frosted flakes. They have several other kinds that are all clearly marked Gluten Free on the front of the box. One is like Kix, one like cocoa krispies...but they taste good which at this point in the game you can really appreciate. Grits are good but if you get the instant ones you have to use the plain...buttered have gluten in them as far as I can remember. I hope this helps you a little, you will be in my thoughts.

Also, beware of "Wheat Free" foods that are passed off as Gluten Free - they may indeed be free of wheat, but may very well contain barley malt or some other gluten.

Wonderful point about the Wheat Free vs. Gluten Free!!! I can't believe I didn't think to mention that. These two items are often put together in health food stores also so be sure to look for the gluten-free on the labeling.

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I learned the wheat free is not gluten free lesson the hard way...I found these wonderful gooey wheat free cookies in the gluten free area of our tiny local health food store, Barbara's raspberry fig bars. My husband and I ate several of them...what a mistake...within an hour I was in misery and when I checked the label there was indeed gluten. I will try hard not to make that mistake again. So I guess Celiacs is an ongoing learning process. I found Amanda's Mommy's Blog on this site and it has been a wonderful source of information and would like to thank those who have spent so much time and done the research to provide such wonderful lists. Sissy

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I made a GREAT oven-baked pancake with apples from the betty crocker cookbook. I just substituted the flour for rice and tapioca flour. it was FABULOUS. I also cook LOTS of pancakes (I thaw frozen berries and put them inside them when I cook them) and freeze them for later use. The berries make them so flavorful that I don't even need syrup!

Also

I love Barbara's Corn Flakes. I add my own Raisin.

ALSO- be careful not eating gluten-free grains. I've read articles that show that celiacs often get vitamin deficiencies and related health issues and that we SHOULD eat the gluten-free bread and other gluten-free products because they are enriched with iron and other vitamins we tend to lack.

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Hello I'm new to the board and only been told I have celiac 2 days but from read the posts on here people talk about night sweats. My question is night sweats coz of the celiac and if yes I finely know why I have them

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Sissy I can feel your pain new to it and all the learn I have to do now makes it hard

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Ezzeryn, welcome to the board. This thread is from 2006, and most of the posters aren't active here anymore. I would suggest you do a search here for "night sweats"--there have been several threads on it in the past. You also might begin your own thread on the subject. Let us know if you need help :)

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Eggs are good for cholesteral levels. They contain lecithin which raises the good cholesterol and lowers the bad, I believe. I don't feel shy about eggs any more. Not that you have to, but look into it if you still like eggs! I suffered along while also and tried to eat very healthy. I didn't realize the whole grain breads I was downing to get enough B vitamins were counter productive.

Get Well.

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Eggs are good for cholesteral levels. They contain lecithin which raises the good cholesterol and lowers the bad, I believe. I don't feel shy about eggs any more. Not that you have to, but look into it if you still like eggs! I suffered along while also and tried to eat very healthy. I didn't realize the whole grain breads I was downing to get enough B vitamins were counter productive.

Get Well.

Like Patti said, your talking to people who haven't been on here in years.

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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