This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I know for me personally, when stress is in the equation, I seem to react to absolutely everything (not the painful cramping like a reaction, but feeling green aaaaaaallll the time). I think it definately factors in! Someone once told me your stomach is like your second brain: if you are a person that freaks a little when stressed, your stomach is likely to react like your brain. Sooo the case for me. I feel for you! It isn't much fun.
I know it is hard being alone with a little one, but if possible, take a brisk walk (I am more of a runner myself) or get some other "moving" activity. I like putting the kids in the bike cart and riding to a playground a few miles away, letting them play while I swing (-; and then riding back. Everyone wins!
I will be praying for you that things settle down, including your stomach (-:
ooops! I realized I only half addressed your questions....cookware can cause CC as can a shared toaster. We switched to a toaster oven and the tray is dedicated gluten-free. New pots and pans(if your current ones are nonstick or really scratched up) would be a great investment if possible.
Everyone seems to be a little different, but it sounds like gluten could be the culprit. I also react within an hour of accidentally ingesting something, and the reactions do get progressively worse and stronger each time it happens. The pain, cramping, nausea, and fog hit me pretty hard too, so much so that I now have a prescription for an antinausea/antiemetic on hand for when I DO get glutened.
As far as how to feel better, everyone has something a little different. I am a big proponent of exercise, because it will help your body metabolize things faster. I go for a run or take to dog for a looooong walk. Eat pretty bland for a while (easy on grease,avoid dairy.... I stick to rice, fruit and veggies lightly steamed...raw gets me when I have had a reaction).
I also drink herbal tea and drink LOTS of water. This all seems to help.
I totally understand! My family is the same way. I was also diagnosed almost three years ago and my family is completely clueless as to how it works. I have a cousin that was misdiagnosed a long time ago and only had to be on the diet for two years. So, my mom keeps telling me that it is only temporary and I will be able to eat all the things I love again soon....ummmm...not really.
I think you have gotten a lot of good advice from other members here so far. I would also tell you to eat before you go, take a snack along or side dish you can eat, offer to host the event, drink instead of eat...eating was a BIG social thing for our family, too, before I was diagnosed. We have actually lost friends since changing our lifestyle because going out to eat was a big part of life. We do go out to eat, but check, if possible, with the restaurant ahead of time or go to a place that has a dedicated glutenfree menu. Any place that has a real chef in the kitchen is usually not a problem (not that i have encountered, anyway). If it is still semi-crippling if there is food involved, always keep a glass of something in your hand and focus on the social part, not what everyone is eating. It is hard, but do-able.
My dear younger sister is getting married this month and for the past six weeks we have been going around about the reception food. My daughter and I both have Celiac and are both members of the wedding party...So my sister tells me that they talked to the caterer about gluten free options and the caterer didn't even know what gluten free was (oh, brother). So they asked what other options were available and were told there was a vegetarian option....which should be fine, right? I tried to tell she and my mom that i need a list of ingredients and to know how they prepare said meal if I am going to eat it. That was six weeks ago. Last week I get a phone call from my darling sister telling me that the buffet shouldn't be a problem because I will be the third person through the line and i can just eat the salad, green bean and potatoes because those should be ok. I am sick of fighting about it and am thinking that my husband will be bringing something for my daughter and I...is that too tacky? My hubby is the only one of us that isn't in the wedding. She says she wants me to be able to enjoy the evening and just have fun.
ok, so let me bring my own food and know that i won't end up sick....
A couple of days ago I mentioned needing to make cake the day before because my daughter will be heartbroken if she can't have cake....my sister was like "you can't eat the cake?"
I don't know if this is too late or not, but one suggestion I do have for you as well. I am also an insomniac and have been for a long time. I try to avoid napping, because that always makes it worse for me. I do find that the days that I get a really good run in I sleep well. Another insomniac friend of mine also swears that the weeks she sleeps are those when she is working out consistently. Just something to consider. Hope you are still sleeping well!
I don't know if this helps, but maybe from her perspective, I was in a similar situation after our daughter was born. I have some obsessive tendencies, too (germs, cleaning, organization, I can't leave home until EVERYTHING is where it belongs). When our daughter was four months old, I started obsessing about where my children were all the time and who was with them. I was ok with my mom and dad and sister holding her and taking care of them, but I had to be there to watch them. I also was completely scared to death to leave them with my inlaws or anyone else. I didn't like to let them hold her even if I was in the room. I went through a little of this after my son was born too, but not as bad and it passed pretty quickly.
When my daughter was 6months old, my husband was tired of the constant stress and obsessing (I was getting up to check on the kids at night all the time, even checking on them in the stroller right in front of me....I had stopped going anywhere because I was afraid they would disappear), so he said I maybe needed to talk to someone and I did. I ended up doing a bit of counseling and being on a mild antidepressant for a few months...it made a world of difference. Why I was ok with some people and not others I do not know, but I do know that I hurt a lot of people and made some enemies, but it was all rational in my hormone twisted, obsessive mind.
So, I can't say it was the fear of Celiac or the trying to be considerate of your feelings, but this was what I had gone through.
After reading a few posts here, I had a long, detailed conversation with my SIL about what she was told and how wrong it was and she explained her Dr.s reasoning for the diet and allergy meds (I am convinced he doesn't really have a clue what Celiac is and how it is dealt with) and she set an appt. to get a second opinion from another doctor!!! I though we made some progress!!! Then....
We ended up going out to eat this weekend to celebrate my husband's birthday and mine (we are two days apart with out anniversary in between (- and my inlaws took us out. I ordered very specifically for my daughter and I and watched how my SIL and MIL ordered...for both of them claiming to be on the diet, neither one of them ordered anything specifically altered, I don't even think they listened to how I ordered. My MIL was eating rolls and Caesar salad...my SIL didn't eat anything that would have had gluten in it...well, except that the seasoning on the steak she ate all of definately had gluten in it, that's why I ordered ours WITHOUT.
Argh!!!! Just when I thought I had made progress, boy was I wrong. /-: Talk about frustrating!
Do you ever feel like you are screaming commmon sense, life saving information at someone and they are either completely deaf or living in a vacuum, or who knows what?!
I am also EXTREMELY sensitive to any amount of gluten! One time, my mom and sister brought a big, green salad that looked perfectly safe to me and I was under the impression that they finally understood what not to do and how to prepare things and was fine with the salad and my own dressing on it until I discovered a random piece of MACARONI in the salad I was eating!!! Come to find out, the same colander that my mom rinsed the salad greens in was used to rinse a pot of macaroni earlier in the day by my brother and he just put is back in the cupboard without washing it! My siser said "don't worry, it's just one piece of macaroni, it won't hurt you, you didn't actually eat it!" Ummmmmmmmmmm.....HELLO!!!! Needless to say, I was not a happy camper an hour later.
I was also diagnosed when we had two very young children at home (15 months and 2 1/2 years). Three months after that, I still was feeling cruddy and having a lot of the same symptoms as your post describes (exhoustion, diarrhea, headaches, etc.) It is exhausting when Mommy doesn't feel well! After those first couple of months, I sought the help of a GI dr. that specialized in Celiac disease. What a help! The first couple months were the hardest, but here is the advice I can give you...
As far as the diet goes,I totally agree that you need to stick to very basic until you get used to things. I also made the mistake of trying too many substitutes before I really healed. Basic is best. I started with lean meats (chicken and fish, we steered clear of anything else for quite a while), rice, potatoes and fruits and veggies. I eliminated dairy, spicy, fatty, and alcohol for a good six months. One thing we did too was go organic as much as possible on fresh stuff. Watch for hidden sources or things you wouldn't think about (medications, vitamins, or anything else you might take on a daily basis). I was also quite sensitive to additives and chemicals. It takes time, but you will feel better eventually. Add things in slowly as you start to feel better. You may find that there is a threshold for things, too(for example, I can eat ice cream one day, but not two in a row, or tomatoes same thing). Here I am, three years later and doing much better.
As far as the children go, my doctor told me that until I felt well (well meaning considerably better), the only energy I needed to expend was to take care of my children. I have a difficult time with letting things not get done, but it is something you have to do for you! Don't be afraid to ask for help (friends, family, neighbors, responsible high schoolers) to watch the kids for you for a few hours or help clean the house or go grocery shopping. Take a trip to a park or playgroud where there is a bench for you and plenty for the kids to keep themselves busy with. Take a trip to the library for several "new" movies you won't feel guilty about letting the kids watch. We also invested in a sand box and plenty of cheap beach toys...sand kept mine busy for hours!!! You need to take the time to recover and let your body use the energy for getting better. I speak from experience. Good luck to you!
So, I was diagnosed with Celiac three years ago and have been strictly following the diet and lifestyle changes it entails. With the exception of a few slip ups, things have gone very well. We also within the last year have figured out the my daughter has it as well and have included her in the gluten free way to be. When I was diagnosed, I joined this site, a support group, and read everything i could get ahold of, as well as tapping into teh knowledge of a couple of Celiac friends, so I would like to think I have some idea of what is going on in my body ( I also have a premed background, so that helps)
A few months ago, my mother in law was having some GI issues and her doctor (who my husband and I are convinced is a quack) thought she might have had it as well. I tried to be nice and sent a bunch of books and tips down with my sister in law to her. They found out she didn't have it (?), but my sister in law had been reading all the material i had sent down (still don't have any of it back)and then she decided that she "most likely" had it. So she started following the diet. Supposedly...
She stayed with us a couple of weeks ago and didn't eat any differently than my non-celiac husband. Last night she posted on Facebook that she was "glutened )-:" I was confused. I sent her a text message asking is she was ok and that I didn't realize that she had been following the diet and if she needed any help. She explained that she was given a salad at lunch that had croutons on it and had picked them off but it still affected her. Then, she said that when she was taking her allergy meds(she has horrible seasonal allergies) she didn't need to follow the diet but didnt pack them on this trip. She also said that her Dr. told her she has a mild form of Celiac and that it didn't warrant full compliance to the diet as long as she was on her meds. I asked her if she had been tested formally, because (from experience) it can be a pain to follow a diet this strict if you don't absolutely have to....she must have gotten upset because she never responded.
1. Correct me if I am wrong, but don't you have it or not. And if you do, isn't the only option the gluten free diet?
2. I do have another friend who has it, but isn't as sensitive. She doesn't get affected by cross contamination, but I am sick for days if my food is cross contaminated. So, if my SIL has a mild form, shouldn't she be affected like my friend and not be affected by the picked off croutons?
3. Allergy meds control a different type of Immunoglobulin, right? IgE? With Celiac, being an autoimmune condition, we are talking IgG or IgA...shouldn't the meds not have anything to do with the control of the disease?
I am really just concerned. If she reallly does have it, then she is at risk for all sorts of other nasties if she doesn't strictly follow the diet, so what do I do? I don't want to make her even more upset, but I think that she has some misconceptions about the whole thing and I would like to help, but I don't want to sound like a "know it all". If I am wrong about any of the facts please let me know, if that is the case I owe her an apology.
Here's the short of it: misdiagnosed a couple of times before i noticed the abnormal blood test results, self diagnosed celiac (or at least sensitive to gluten)ended up going to see a specialist at Univ.. of Chicago who has done everything to rule out everything and is down to the endoscopy and biopsy to check for structural abnormalities. so, after being gluten free for two full months, i am back on gluten for a two week challenge before the endoscopy. I am only on the third day of the challenge and I feel so terrible, I want to quit.....any advice? Do i keep going or call the dr. office and let them know how awful i am feeling this early in the game (obviously gluten is an issue)?
had the 18 month check up a couple of weeks ago and I brought up what we had discovered (no more constipation, better demeanor, more growth and socialization since going gluten free.) Her doctor baisically told me that it may just be a coincidence and that it will probably be like our son's egg intolerance (which he outgrew) and it was most likely a temporary thing. we'll just wait and see what happens, but if we "slip up" here and there it shouldn't be a big deal.
We have made mistakes a couple of times and notice that when there has been a deviation from the gluten-free diet by accident that she gets terrible diarrhea the next day (weird since it was constipation that seemed to plague her before).