Rusla

My animals, even when Thor is being a monster, have helped me and saved me through very tough times. No one on earth will love you unconditionally like an animal does. Adorable picture.

My issue was, of course, not with people who have not been "officially" diagnosed, since my understanding is that many diagnoses stem solely from a positive response to a gluten-free diet.  It just doesn't make any sense that I would have been offended by people who are here for any kind of support relative to survival.

My offense stemmed from someone suggesting that they might benefit from pretending to have celiac disease for any reason, even to make their gluten-free lifestyle better understood.  I can't imagine doing that, even during the many years that I was undiagnosed and suffering from a myriad of symptoms.

A few times since I was diagnosed six months ago, I have run into people in local health food stores who are shopping for gluten-free food and chatting about it with me when I realize they are doing it for diet reasons, like Atkins.  I guess that makes me resentful, because I wish that it were an option for me (I'd opt out).

I was not trying to be selfish, I was expressing my thoughts to better understand the forum.  Apparently that is discouraged unless my thoughts jive with the mainstream.  I must have expected a gentler response, but I don't know why.

I am sorry if my comment was hurtful or "selfish", but I think I am entitled to my worry, anger and frustration (and consequent venting) just like everyone else.  It is hard for me to feel like gluten is hanging over my head like a sword of Damocles, especially since I have recently been diagnosed with "unresponsive celiac disease", meaning that my intestines are not healing well even gluten free.

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Jmarie,

Unfortunately it seems that I was not the only one who thought you were attacking all who were not "cast in stone" diagnosed as Celiac. However, because some of us have tried the "ER4yt Diet" which I had originally done for health reasons to see if it made me feel better. That was because it did not have any gluten in it and long before my test, which now I find was not done right because I was not supposed to be gluten-free when doing the test. Everyone on here that I know of has a family, friend or themselves show gluten intolerance or confirmed Celiac. Because we all don't feel well, and this is tough to deal with when people snicker when you ask if a cosmetic is gluten-free they think you are being silly or frivolous. I did not know Atkins was subscribing to gluten-free. That as I have heard and seen people get really sick from that diet is what has been deemed "a dangerous diet."

I can understand why it would upset you when people are doing it "just as the in thing to do." It would be a great deal better if some people would understand what we go through instead. It is amazing how much stuff put into our foods is dangerous to so many people. I would definitely like to see MSG made illegal. We who are not fully confirmed yet are definitely do this for fad sake. Most of us can't even get doctors to pay attention.

Hi,

I was just diagnosed as having Celiac disease 4 days ago.  I think I can cope with the new diet but I am overwhelmed  about the restrictions on shampo, touthpaste, mouthwash, etc..  Is this really something to worry about or isn't only something that the most sensitive individuals need to be concerned with?  My doctor never mentioned changing your shampo. 

Alos what are the bast on line shopping sites?  I would really like to find a site that I could trust that would have all the products I need.

Thanks for your help.

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I have not found a site that contains everything one needs. Of course it depeneds on where you reside. In the US you seem to have much availability to good products than where I live. In Canada if I lived in Vancouver or Toronto or Montreal then my availability would increase to more things however, it would be a good idea to find your local Celiac Association Chapter, they have tons of good information. There is a lot of great information and recipes on this site also.

It can seem like a daunting chore going gluten-free but at least you have great support here and with the local Celiac Chapter.

Best of luck to you.

i'd totally be up for meeting sometime!! i couldn't do it at this point in time, mostly because i live in FL and am way short on funds right now. but i'd love to meet up with anyone in the spring!

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It's a great idea but bad time of year for me expensive plane fares etc., but maybe plan something for late spring somewhere. I am in Alberta.

I am always sooo bloated.  I have been on the gluten-free diet for 2 weeks now and I find I am still getting bloated.  Not as badly as when I eat gluten but still very uncomfortable.  Is this because I am still healing or could it be something else altogether.  I only eat chicken and vegetables and I avoid nightshades and that is all I ate the past two weeks with the exceptin of a plain pork chop. HELP!!

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Could you have accidently come in to contact with gluten?

I went to dozens of doctors and not one of them even mentioned celiac. All they could think to do was write prescriptions. I am self-diagnosed because I had no other option. Once I quite eating gluten the turnaround in my health was so dramatic that there just isn't any question as to what the problem is. The test for celiac disease just aren't all that accurate so it is still possible for the test to be negative and still have celiac disease.

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So true with so many tests. Especially true of thyroidism and now I know how subjective thisthe tests for celiac disease are also. The only reason a person who has no one who has celiac disease, or celiac disease like sympton, family or friends with these problems is on here would be for a fact finding mission. They may be gathering information so that they are better informed and it would be a darn good idead if medical students would get on these boards. Maybe they would learn not to rely on technology and to rely on symptoms and good old common sense.

I was wondering this same thing!  I have had 2 seemingly unrelated problems for my whole life- recurring UTI's and terrible problems w/ chronic diarrhea.  I have finally solved one of the problems (i have a gluten sensitivity if not celiac disease) but the UTI's are a mystery. I have had several procedures done (when i was 4, 9, 12, and 18) to figure out what is causing them but they couldnt come up w/ an answer (except for the inflammation and an "extra lining" i have.  I havent had one since going gluten-free but it has only been 5 months.  Think we are onto something here???

Stefi

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I have had bladder and kidney problems since I was 2 years old and almost died from it then. I have had 2 bladder and 2 kidney surgeries and I would be interested in finding out if this is something that happens with Celiac. No one else in my family has had this problem

Oh my stars! (to quote Samantha Stevens).  Have they figured out what's going on?  Can they explain why the freezing won't take?  Does the celiac have anything to do with it?

I'll keep up my search for answers and post anything I come up with.  Actually, I'm having dinner with my dentist and his wife (who is also a dentist!)  tonight.  He's already told me he has one other patient who has similar problems like mine.  Basically with this  patient, any time anyone goes near a tooth, say to fix an old filling or even just to do a new small filling, the tooth never heals, and it always ends up in a root canal.  And then the root canal doesn't take and the tooth gets pulled.  i think this patient lives in Montreal or something, but I'll ask the dentist to give her my number and ask if she'd like to compare notes.  It would be very interesting to see if she also has celiac.

One more quick question...do teeth problems run in your family? 

thanks again

Nancy Drew

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They said it is more than possible that between the hypothyroidism and the gluten intolernance (which came out like that probably because I did not know I was notsupposed to be gluten free for the test.) they said can have a great deal if not everything to do with this. I have to retake the Celiac test in 3 months. Wheat and dairy is a major problem in my family and even though the teeth are not the best in the family no one has lost the amount I have in such short of time. The only one with the same amount of tooth loss is my 82 year old mother. Up till about 5 years ago I all I had lost were my wisdom tooth but then most of the teeth in the last 10 years, except for two have been root canaled and capped but they are all deteriorating quickly.

My aunt told me that when my grandmother had them she had TB and died when my mother was 4 from tb My aunt had all her teeth out at 14 because the enamel was all gone. Now as my heritage is Italian/Scandinavian which are prone to Celiac.

They don't know if any of the freezing problems have to do with the medical issues at hand. If you find out anything I would be interested in hearing about it anything that will help us solve these problems would be a bonus.

Also scratches and bruises stay around forever on me, which got so much worse after the pernicious anemia episode.

"By the way I was diagnosed through enterolab as gluten intolerant."

May I ask what this enterolab is? I keep reading different posts and I see how people were confirmed through this. I am having TONS of problems with doctors, going to a new GI now. You are SOOOOOO right, they all think it's IBS. To tell you the truth, I don't even know if I believe in IBS anymore! There's always got to be some underlying reason for things, and it seems like IBS is their "easy out." I have not ever been tested for Celiac yet, though I am almost positive I have it because we all know our own bodies best, am I right?

Anyway, if you could give me more info. on the enterolab, I would appreciate it. I live in NYC, if that makes any difference. I want to cover all ends, just in case I have another problem with this GI, too.

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When doctors are too lazy to do their job right or they just aren't smart enough they call it IBS, Menopause (if you are a woman), the flu, stress etc. Instead of looking for the real reason. The doctor who almost let me die from pernicioua anemia called it everything but jock itch for a year. Doctor problems in North America are resounding. It seems like the majority of us on here have gotten run around after run around from lazy inefficent doctors. You can bet your bootie that if it was them or their family there would be no messing around.

Hi, I'm living in Kathmandu, Nepal.  Was wondering if anyone has lived in a third world country and tried cooking there?  I've been here a year now and am getting sick of rice 3 times a day and wanted to swap some recipies or something of the sort.

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Living gluten-free is tough enough but in Nepal, that has to be a challenge. Of course you can always pick whatever out of the area where the recipes are and give it a shot.

Hope you find someone else there.

Hi guys,

I finally went and bought a bread machine realising at last this is a lifelong thing.

Well, I have tried every recipe I can get my hands on and they all SUCK.  I mean honestly the bread, even toasted, tastes disgusting.

I live in South Africa, I cannot get Kinnikinick (sorry no idea how to spell) products or any other read-made gluten-free bread.  I can't get gluten-free tortillas or anything else I could use for a bread substitute.

I really really need some sort of bread - can anyone help me?  I've lived without bread for 7 months now and I'm desparate!

Yvonne

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Don't worry Yvonne, Kinnickinick is not that good. Try www.glutenevolution.com Everyone here says her breads are good and not dry like dirt. She will send to Canada so you may send to you too. I am getting some next week.

I tried this diet---there is another thread in the forum about this--search for it--you will find other answers too.  I am a type A and I dont recall him telling us to eat wheat--as I recall, it said to stay away from wheat and I know it said to stay away from dairy products.  I do just fine with dairy, but I followed the diet and I used soy products.  I loved 8th Continent Vanilla Soymilk-----but, this was when I found I can not tolerate soy products.  The diet made me very ill.  I dont do well with many meats either.  I eat chicken breasts, boneless and skinless--very white pork, tuna, and salmon.  I eat peas, carrots, green beans, and a little corn.  I cant have my favorites likes broccoli, cauliflower, cabbage--all too gasy for me.  I cant have tomato products anymore, cant even eat them fresh.  Corn is fine as a vegetable, but not processed--no corn flours, no corn chips--nothing like that.

Gluten free is not a diet, it is a lifestyle that we all have to live.  We dont have a choice.  Diets are a choice!

Deb

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Actually what the book said is certain wheats...which I can't remember right now because I am at work are neutral for us. But as wheat in general for me it is all out except for like soy flour and potato starch. There are wheats like Semolina etc., that he listed as bad for us.

Thanks to everyone for your help.  It's kind of overwhelming knowing what is and isn't gluten-free!  Why can't they just make ALL of their products gluten-free in the US as well as Canada???

Anway, Ella still has a nasty cough and fever.  She coughed much of the night, but didn't wake up.  She still has a fever today although so far this morning is only 101.  Hopefully that won't get higher as the day goes on.  I guess there's just something going around and hopefully the baby won't get it too!

Thanks again!

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Have you been putting cloths with ice in them on her forehead or wiping her face with cold cloths. Another thing that works for fevers in anyone is a bowl of ice with a fan blowing over it towards them.

Here's an update on my root canal sage...

I went to the dentist yesterday, 3 full months after having the root canal done, and the tooth is still causing lots of pain.  He had to take out the temp filling and needed to use some freezing...but again, the freezing did not work and I could feel everything.  My dentist is a really nice guy...and seeing that the freezing wasn't working, he took the time to carefully scrape out the filling instead of using the drill.  It took about 2 hours. 

He put in a more solid filling and said to wait until we figure out what's happening.  In the mean time, he did more x-rays of the teeth on the other side that are causing grief, and they look absolutely perfect.  The one tooth that's really causing pain doesn't even have any cavities.  So he is stumped....but he said in dentistry, he comes across about 1 in 2000 people who react like this, so it is uncommon, but not uheard of.

He did say it was weird that the freezing doesn't want to take...

I'm turning into Nancy Drew and I'll report anything my investigative spelunking (spelling?) turns up

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Nancy Drew,

Yes spelunking is correct. I can relate to tooth problems. 5 weeks ago I had a tooth filled the filling came out in three days. He put a deeper one in and my tooth absessed in three days. We couldn't save it and he pulled it over a week ago, now I won't heal and the bone is still exposed.

Because freezing does not hold on me and my Tmj, I have to be under sedation. I have lost 11 teeth in less than 5 years it was my dentist who advised that I have the Celiac test done.

1." 3. Is anyone ever just scared to eat because you just are sick of getting sick? I used to be this way. In the beginning, I ate only cottage cheese and fruits, along with caramel corn rice cakes and peanut butter. I never put anything in my mouth that I have the slightest doubt about. The one thing I do that sometimes can be tricky is kissing and I am not giving that up ."

I don't know if this is relevant but if I kissed someone who has drank beer, or rye or any liquor like that I would get sick. Actually with beer especially I would be very sick.

I guess I messed this quote up.

I have seen grocery store rotisserie chickens that both have gluten and don't have gluten.  You must read EVERY label.

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Some spices have gluten in them even though they don't say they. Just like seasoning salt doesn't say with some brands that msg is in the spice. Best ask them what they used on it and if you can see the label of the spices. Because of msg alone I make my own seasoning salt.

I know this isn't going to be a popular thing to say, but since you brought it up, I am kind of annoyed at the volume of people on this message board that don't have celiac disease.  What are you doing here?  If you just want to be gluten-free, great, good for you.  It's probably a healthy choice. 

But isn't this "Celiac.com" for people with a disease that renders gluten intake life-threatening?  Isn't it here that I can communicate and empathize with people who have suffered debilitating symptoms, then had made a drastic lifestyle change to save their lives?

I don't fault anyone for needing support with a diet, but I don't think this is the place for dieting support... Maybe I'm in the wrong place.  I have a brother with a birth defect due to this disease and my mother is gone from an autoimmune disorder related to progressive celiac disease.

I don't think you should lie about it, that's ridiculous.  That's mocking someone's illness... like saying you have cancer when you don't.  If you just don't eat gluten, just say that: "I don't eat gluten because it's not good for me".  The end.

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Perhaps you don't realize that some of us don't know whether we are or not and some have hand false negatives. Some don't show on a blood test and have to wait for other test. Many have the same symptoms as Celiac and are trying to figure it out. Some people can't see specialists because of extreme waiting lists or some specialists won't see them if a blood test is negative. Others have had positive in biopsy and negative on blood test and they are still confused.

The medical profession is often vague and not forth coming on many things with people no matter how hard you push. So is it not better that those who are waiting, those who don't know yet find out all the information they can. If they don't happen what they find out here could help others along the way and some day because of being gluten sensitive they could be Celiac.

Do you honestly think people who are on here are mocking those who know for sure. Some are here because they have family and friends that are and they are trying to do the best by them are you going to begrudge them the knowledge to help friends and family?

Thanks for your help!

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Just a note on Tylenol in general. That drug never leaves your liver, so over the years tylenol can build up in peoples livers and if anyone is a heavy user of it beware. It will eventually explode the liver. I say this because I know not only many people who constantly use it all the time but feed it to their kids on a regular basis.

I am using a Mac computer so maybe that is why I cannot for the life of me find the Edit button you are talking about.

All I have is: add reply, or start new pole.

Once I go into the 'add reply" window...

all I have is: http://, IMG, @, QUOTE, or CODE buttons.

I will just not worry about it, and be more careful in the future.

Thanks for your help.

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Don't worry you can see it on a mac, I use a mac. Once you have sent it, it will come up bottom right hand side beside quote, click on it and type in or take out what you want then at bottom below emoticons click the "add" button then at the bottom click "submit modified post."

Iws thinking of trying it too but Iam type b and I think that means everything in moderation.  It says ygurt and milkare good forme but there is NO WAY and it says to avoid chicken which I eat everyday as I am intolerant to so many things which I hope will improve as this is only my second week gluten-free.

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If you don't have a problem with chicken then do it and if you are not into yogurt don't do it. I pick what I want because I do not eat Mackeral, I will not give up my halibut when it is in season and I still love my shrimps and chicken when I have them. I eliminate the wheats and glutens and kill off the tomato sauce. I would eliminate those which you know are killer for you. Believe me there are things on my list I won't touch and others that he says no to that I will. If they start giving me a problem then I exclude them

Good luck.

Today I got a phone call and I won a trip for two to Jamaica -- everything paid, worth $3000.  This was a legitimate contest, not a scam and I entered before I thought I had any problems with wheat.  Of course, I did not expect to win it!  I thought about it for a while, talked to my husband and then I called the lady back and said no thank you.  Open Original Shared Link  I put this in the coping with forum, because it was a new experience for me to deal with (VERY NEW, LOL).

She had NO idea of if they were able to deal with food allergies when I asked her before making my choice, there were several resorts to choose from.  She wanted to know if I would "get better" later in the year and wanted a different date to travel.  She was very nice, but I could tell she did not understand at all.  She asked me to send an email to formally give up the trip and I did for their records, and I did.  They will select a new first prize winner now.

I don't know if I could handle being out of the country and not knowing if there was any safe food to eat.  I am sure the food at the Goldeneye Resort would be wonderful, just not safe for people with food issues.  I am just at the start of all of this and I don't have experience like many of you do.  Maybe after I learn all about this I will feel like travel.  I am just not there right now.

I am wondering now, would you take the trip or say no?

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I would have taken the trip. On the Caribbean Islands a lot of their main staples are black beans and rice, seafood and chicken. I would never give up the trip. They have plenty of fruit too.

hello! i have been scanning all of the wonderful posts for the past few months or so. what supportive folks you all are! I decided since I'm going to deal with celiac disease for life, I will probably need some support along the way, so, I finally registered. I have many questions.....  I was diagnosed a year ago/ kind of.  negative blood test. but, my endoscopy results showed "enlarged lymphocytes- possible celiac sprue".  my doc. told me that I more than likely had celiac disease. i asked what else would cause enlarged lymphocytes and he said "nothing". He told me to go gluten-free for 6 months and if my sickness abated, then it was Celiac. So, I guess that was my diagnosis.  I was in denial for a few months, but, being sick all the time got really annoying. I thought I could just limit gluten. But, I have found out since, that is NOT the case.  Now, if I accidentally get a few crumbs on something or accidentally eat a bite of something tainted, I get REALLY sick almost immediately.  The reaction is much more severe now that I have eliminated the gluten.  I am wondering if anyone relates. 

I want to see if anyone's symptoms are similar to mine-- because celiac disease is such a vague diagnosis-- I feel like I need to remind myself that I truly have this disease.  I used to be sick all the time- bloated constantly, D, really tired, and my stomach always just hurt and was in pain.

Since being gluten-free for about 7-8 months, when I get glutened, I throw up about 30 minutes after eating.  And I also get severe gas on occasion. I also get extremely tired and depressed feeling.  And- nauseas.  Of course, all in all, I feel 500% better than I ever did.  But- when it happens- it SUCKS!

Did anyone elses symptoms change after going gluten-free?

Also--  I'm just venting now because I don't personally know anyone who can relate. But- I have always been a huge food lover (which is why it devastated me to find out my limitations).  And, lately, I am so bored with my food because I'm scared to eat anything different!!  I am 25 and a single professional. So, I do not take the time to cook. And, I love eating out.  But all i eat now is: French Fries, Mexican tortilla chips with lots of Queso, cheese enchiladas on corn tortillas, refried beans-- and LaraBars.  That's it! Oh- and puffins cereal, which I am addicted to and made myself stop for a while.  I just feel like it is so hard to even TRY to order safe at restaurants. I tried being adventurous yet safe last week and I ordered a Salmon Salad.  turns out the salmon was blackened and must have had something bad in the seasoning. I spent the afternoon throwing up with the WORST fish taste in my mouth!! it was GROSS. sorry to share that- but, I just have to vent to someone who may feel my frustration.  I know its not healthy to eat fries and cheese all day. but, everything else is so risky w/ contamination and added secret ingredients.  I am fed up!

I guess this is adequate for my first post and its mostly venting. but, if anyone took the time to read it and can relate, that would be helpful. 

thanks

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From what I understand, even french fries are safe, unless they are totally done in a separate fryer that has never had anything glutenous in it etc. I am not diagnosed celiac, yet. However, I have the pains in the stomach and abdomin and some other nasty things. I didn't know when I had the blood test that I had to not be gluten free until after I had the test. After this weekend I go gluten free. I myself wonder about how accurate the blood tests are and here no specialist with do the other tests unless you show positive in the test. So far I show gluten intolerance but I knew that one before. However, do check out the recipe section, you may start cooking and some of us have lots of recipes.

Now these great people here encouraged me to get into contact with the Celiac association in my city and I have. So now I give you the same good advice they gave me, find them.

It is amazing how alone you can feel with some of these things.

   

"I know now, from all of you, that we may feel alone but we are all probably in the bathroom together. "

Rusla ... maybe we could all have a party in there   

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Then we will need a pretty big bathroom.

Forgot. When I was having serious surgery and was in the hospital three months the nurses would come in to drain things etc. I would crack jokes even in extreme pain. The nurse said to me I never lost my sense of humour in spite of the horrible pain. I told her I had a choice; I could cry 24 hours a day or I could make jokes which also made me feel better. I chose the latter. I figure if we can't laugh about it we will all be in tears

Jenvan,

You would be amazed how well it works (Prep H).

When I have really bad bags under my eyes, I put the Preparation H Cooling Gel on my eyes the night before and "Presto"!!!, next morning, they have gone down considerably........  I kid you not!  It is a well kept secret in the modelling world - almost all models use that trick......

Karen

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Karen,

They say Prep H is good for all facial wrinkles too.

Now, on the other subject for all of my adult life I have had the problems of when you gotta go, be there now, or when I eat, especially glutenous things I have ten min to find the bathroom. Tired of the pains and jumping up in the middle of the night or 5 times a day, like today. Worrying about driving down the highway and there is no gas station. Some doctor tried to tell me it was a parasite that lived in women's bodies, funny some of the male members of my family have this too, but not as bad as mine.

I know now, from all of you, that we may feel alone but we are all probably in the bathroom together.

Scones were one of my favorite things to eat, so here is a recipe I tried out and loved! I got it from a cooking class at Central Market.

2 oz of garbanzo flour

3oz of brown rice flour

pinch of salt

1 1/4 tsp baking powder

3 oz grated sharp cheddar

1 oz butter

6 tablespoons of buttermilk

Preheat oven to 400 degrees

Mix the dry ingredients and cheese together, then rub the butter in as though for a pastry.  Mix in the buttermilk.

knead the dough lightly on a floured surface and then press it out at about 1.5 inches thick. Cut out rounds or triangles. Lay out the scones on a floured baking sheet. Place them in the hot over for 7-15 minutes (depedning the on the zise of the scones). They should be lightly tanned but not burned!

They were delicious...at least to me!

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They look very good. Thanks.