nettiebeads

Hi! I am new here today. I have been sent for tests by my doctor today and I hope to have the results in the next 3 weeks. I am a bit nervous reading all the things that celiac disease can cause, since I seem to have most of the symptoms, and it's all abit scary right now, but I think this site might prove very supportive and helpful. Is there anyone else in here from the UK?

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Welcome to the board! When you read the other posts you will realize that no question is silly, stupid, or off limits. We will discuss anything - diarhhea, gas, bloating, cycles, excersize, makeup dating, foods, doctors, you name it. A lot of people are very knowledgable (if you every read any posts by celiac3270, you will want to ask him if he's sure he's only 14) and every one is helpful. The gluten-free diet isn't impossible, just takes effort and after awhile it will be second nature you won't even think about it.

Thanks for your response.  I know some of the symptoms but the one that's freaking me out is the muscle twitching.  Is that one too?

Yes, I am gluten free as of one week ago. 

MJ

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This is such a great forum. I mentioned it to my dr today (my yearly) and he was glad that I was here taking more control of my health. Anyhow, the celiac disease causes malabsorption, which means your body isn't getting enough nutrients. You could be very low in calcium and potassium. Every now and then I'll get those twitchings and up my potassium some until they go away. How long do you think you had celiac disease before it was diagnosed? You could have gone a very long time without getting the proper amount of nutrients into your body. It will take awhile before your body will act more normal, depending on the severity of damage to your small intestine. Read some more of the threads here to get an idea of where cross-contamination possibilities exist. I've lived with this for 9 years and just recently joined this forum. It's been very helpful in becoming more aware of my surroundings. My husband is nonCD, so I'm wiping down counters whether they need it or not and washing my hands much more frequently and keeping them away from my face. Give yourself time, your body has a lot of healing to do.

Where did you find Denny's allergen list? 

While on vacation in Bloomington, IN in May we took my celiac daughter to Denny's and the server called the manager over and he told me nothing in his restaurant was gluten free...and then walked away.  I was totally furious and we got up and left. 

We are going on vacation to San Diego in 2 weeks and would love to give Denny's another chance.

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Voting with your feet is the best way. I guess some people forget that they are in a SERVICE industry. Hello! Of course, you can always write to the corp office.

Sunny San Diego! I'm jealous. I lived there for almost 9 years (Navy wife back then) and my daughter was born there. Have fun!!!

  I love some salad bars because of their variety.  I stick to the oil and vinegar dressing, assuming that's the safest, however, I am sometimes tempted to slather ranch all over it!  When I check out different web-sites, like www.kraft.com they list their ranch as safe, but not the caesar (not sure why!).  I would love to find a little leak-proof bottle so I could carry my own in my purse.  If you get one of those salad bars that has fruit and jello, the jello is also safe (according to Kraft), so there's lots there you can enjoy (if you don't get near the croutons).

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I'm in hog heaven if the salad bar has jello and whipped topping. That's desert for me!!

I was wondering what everyones take was on salad bars.  How safe do you think they would be as far as being gluten free?  Lots of cross contamination?  Certain items better than others?

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A lot of times when I eat out with friends and family I'm reduced to the salad bar. But I've never had any problems.

Hi all!  New to the forum and just had a few questions.  I was wondering if any of these symptoms sound like celiac to you guys.  In the past several years I have felt sick almost everyday.  My main complaint has been nausea, diarhea, constipation, bloating and fatigue.  I also have ezcema and bad allergies.  I have always felt over tired from doing absolutely nothing.  I was also diagnosed with epilepsy when I was 6 and a lot of these symptoms were always attributed to the meds that I was on.  However, after swtiching to meds which do not have these as common side effects three years ago i am still feeling like this.  I feel that the doctors never knew what it was so they always attributed it to the fact that I was on meds.  However, after all these years I don't think it is that anymore.  I am feeling very frustrated and these symptoms are really starting to hold me back from certain things.  I finally went to my doctor two weeks ago and he did some blood tests for anemia and such and they all came back perfectly normal and he also sent me for an ultra-sound of my liver and gall bladder, also normal.  I am going t o a GI on Tuesday and hopefully he will have some more answers for me.  I was just wondering what you thought.  Thanks so much!

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Oh yeah, sounds so familiar, especially the fatigue. You know the kind, not tired from lack of sleep, but the total exhaustion from just sitting at the computer. Not to get too personal, but is the diahrrea pale, watery and foamy? If so, that's because of the mucas that the body is producing to rid itself of the contaminate (gluten for those with celiac disease). Have you tried going gluten-free?

REALLY??

Sheesh....well I would only be breathing it in if it were flying around right? Not like if some just spilled on the floor...which is the usual scenario. I will avoid the bakery dept. like the plague for sure. There is a door seperating the bakery from my area...and my office also has a door I can close when I'm working.  I'm getting desperate...can you tell????

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hmm, I wonder if one of those ionic breeze things would be tax deductable for you for your work. Golly, I would be scared to go back to work in that situation - I used to work grocery too and I know how that stuff gets everywhere. If you're 100% positive that you wouldn't be breathing in flour dust, then I guess all you can do is try. But I know I would be washing my hands as much as possible, never touch your face with your hands, and never eat any of your foods in that area. I know you're excited to go back to work - Good Luck!!!

[i learned a valuable lesson though! Its just so difficult when you are out and hungry, there is nothing to buy quickly to fill you up.

Does this happen to anyone else?

Yvonne

Apples and apple juice both give me a problem. Anyone here have trouble from them and are they gluten-free or not?

I also get indigestion from water..Is this cekiac related?

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I was diagnosed with diverticulitis after I had developed celiac disease. I don't think the two are related, but I know unpeeled apples are out - very uncomfortable gas. They are gluten-free, but hard for some tummys to digest. If it hurts, don't.

Hi, new poster here.

Don't panic just yet, if you had contaminated food only two days ago then nausea and several bowel movements a day would be just what I'd expect!    I usually have that kind of symptoms for several days up to two-three weeks after being glutened... hang in there! 

Hi everyone, I've been lurking here for a while now, got lots of good information from this forum. I self-diagnosed myself almost a year ago, feeling great nowadays as long as I keep watching those bread crumbs! 

Pauliina

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Hi to you too! I'm rather new here myself, but not to celiac disease. After reading a lot of these posts I realized that I haven't been completely gluten-free as I thought I was. Drat! But knowledge is power and I've made a few changes at home. Feeling better already.

Yes, I figured you were experienced enough to know it wasn't a "cure" ;-)

And Stephanie, oh it makes me so sad, but coconut milk seems to be too rich for me to digest right now    It's sounds soooooo yummy.

Merika

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how about coconut extract? You could get the taste, but not the consistancy.

[if I eat gluten I get horrible abdominal pain, diarrhea, gas, constipation, my anxieties sky rocket and my depression is worse than usual.

The emotional reactions you are having makes me suspect Celiac. My depression is horrible when I've accidentally ingested gluten, even though I'm on zoloft for life (disthymia). Have you played with the gluten-free flours? Potato flour is heavy and dry, rice is grainy, soy makes a very light baked item. Last night I got ambitious and made zucchini muffins (tasted great, texture off), oven fried chicken nuggets, and zucchini fritters. All gluten-free! Gorged myself. I make chicken alfredo using store bought cheese sauce (I think Ragu - it's gluten-free) with pre-cooked chicken and serve it over spaghetti squash. I've used the gluten-free pantry pizza mix. Passible, I just load it with everything so you don't notice the crust as much. Lots of veggies -I love potatoes - OreIda makes a steak fry without seasoning. Then my husband seasons them and oven bakes them - just like seasoned steak fries w/o gluten!

Oh, and fruit - canned or fresh helps fight the constipation.

HI,

I was just diagnosed with celiac disease. As an Irishman I am in mourning that I will no longer be able to have a Jameson and a Guiness. Are there any whiskeys or dark beers that you know of that I can still have?

Cheers,

Duane

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Whiskey is a grain alcohol and supposedly any gluten gets filtered out in the distallation process. I know I haven't had a celiac disease reaction to whiskey, but for some dumb reason whiskey, even a little bit, gives me one hellacious hangover. I'm stuck with vodka and tequila.

Open Original Shared Link

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At the most it could relieve the symptoms, but not cure. I'm sure the celiac disease will still be damaging the intestines.

Hello,

    I'm writing on behalf of a family friend. She is 89 years old and has had Celiac Shrue for many years. While she has been careful to maintain a gluten free diet for years; with her advancing age she is having trouble maintaining her weight. Not being computer savy she has asked if I could find any information (particularly any new information) on this disorder and maintaining weight or diet advice. A higher calorie diet that would be tolerated by a celiac patient (and an older lady) would be most welcome. I should note that she has had excellent medical care and seems to have no other known complicating factors, beyond her age. This woman is a dear friend to the the family, and a strong old gal; I would be thankful for any information, suggestions, links to articles, etc. that anyone could provide. Thanks in advance for any information.

            CH

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Does she have a dr that specializes in geriatrics? Has she been tested for diabetes? Weight loss is a symptom of that too, and at her age it could be a possibility. I'd like for her to be able to rule out other factors before focusing just on the Celiac aspect.

Wow! Thank you so much for all your responses--and for the encouragment. I really appreciate the encouragment and learning that the diet may help with the RA symptoms is itself encouraginig. I don't think I have ever been completely gluten free because gluten was hidden in some foods I was unaware of--like tamari almonds that were actually made with soy sauce that had wheat in it. It will be interesting to see what happens with the RA symptoms when I've been gluten free for a while. And yes, I don't think my doctor understands celiac disease because she told me that after you have been gluten free for about 6 weeks, you can usually start introducing gluten back in the diet and can tolerate it better .

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Doctors usually don't get much training in nutrition and autoimmune disorders that are treated by diet alone. I'm sure in other ways she may be a very good dr. I had an internist tell me I could probably eat wheat again. She was very good at treating my ulcer and such, but I did know better than her regarding the wheat. Glad we could help, let us know if the RA improves. And this is a wonderful forum for support, encouragement and to keep one from feeling so isolated because of celiac disease.

I put cream of mushroom in mine...

I package pasta cooked

I can president's choice cream of 3 mushroom soup

grated cheddar cheese to cover top of casserole dish

1 can tuna

I put it in the oven till the cheese is melted and enjoy

Karen

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Where do you get president's choice? I've always made a cream sauce with cornstarch for the flour. A little thinner, needs more time to cook down, but a very acceptable substitute.

Hi Everyone,

Does anyone know of a good accountant  in  New York who is familiar with deductions for Celiac Disease.  I appreciate everyone's help.

Loretta

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deductions? what deductions??? I'm an accountant, and my auditor is a cpa (her father-in-law has celiac disease) and we've never heard of deductions for celiac disease. Please give me more details.

I I am hesitant to get started on steroids, since my RA symptoms are mild and most of my symptoms fit celiac better (fatigue, headaches, stiffness, numbness in my hands and arms, nausea, esp. when eating wheat, and indigestion when I eat anything with gluten). My concern is that the steroids could make the celiac worse and also could cause other problems that are worse than the RA symptoms I have--and that the possible celiac problem is being ignored. My doctor said I could try going gluten free but that it is really difficult, and that the steroids might enable me to tolerate gluten anyway. That doesn't seem like good advice to me, since a senstivity to gluten may have triggered the RA symptoms in the first place and could certainly make them worse if I continue to ignore it.

What should I do? Follow my doctors instructions or my own instincts that say the celiac thing should be followed up on before doing anything so drastic as taking steroids?

Thanks,

Meganlatebird

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I agree with what others have been advising - diet first. It's not impossible, sometimes it just takes forethought and sometimes some creativity. The fact the the dr. thought the steriods might enable you to tolerate gluten means she really doesn't understand the disease. Let her know you understand her reasoning for the drug, but your research suggests that going gluten free might help to alleviate your problems. Plus excersize. I work in a small office but two of the ladies are RA - one does the prescribed routines and the other one doesn't. Guess which one has more problems? The one who doesn't move her body as she should. I think your concerns and fears are justified - listen to your body and your instincts.

Does anyone know whether Sudafed is gluten free?  I read that it was gluten-free on a different forum, but I'm pretty convinced it's not  .  When I went to Sudafed's website they were not able to confirm that it is indeed gluten-free because they don't test for gluten in their products. What a bunch of malarkey.  Has anyone taken Sudafed Nasal Decongestant in the past?  How did you react?

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If it helps, I've used the WalMart brand for sudafed with no problems for years. And cheaper!

Hello to all

Looking for a safe merinade for chicken, beef, tuna and salmon.

Saddened to give up you Toshida Sauce from Sam's Club.

Any suggestions would be wonderful.

Lisa

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My husband uses Caribbean jerk and Herb & Garlic mixed together. I think the brand is Lawry's. It's terrific and safe.

I have read on this site that one of the symptoms of celiac disease is weakness.  I was diagnosed as a celiac about three years ago, but never had any symptoms of weakness. Mostly it was severe stomach cramps, diarrhea, etc. This past spring I began to feel weak, it seems to start just around the time I eat breakfast, seems to be worse around the time I want to eat.

Sometimes I have a really fast heartbeat. I took a stress test at the hospital but it  didn't reveal any problems. It feels as though my normally healthy body is struggling.  Now, I think all this is celiac related. Thanks for any advice you can give. I just joined this site and think it is wonderful. Dick's gal

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My problem is fatigue. When I get glutenated I'm down for nearly two weeks - just dog tired. Or if I'm hit with something else where I don't eat quite right resulting in reduced protein intake I'm tired and weak until I get built back up. Usually that takes me another week or so from after I've recovered from whatever got me off course in the first place. And that's been more so as I've gotten older (physically, not mentally ). So, what do you normally eat for breakfast? If it's cereal based, has the manufacturer changed the ingredients? (I'm always checking labels even on "safe" foods. You never know when something will be changed to save a fraction of a cent for the makers) How long has the fast heartbeat been happening? I've read a lot of threads here - it seems there are thyroid problems that are related to having celiac disease. Just a thought. And I agree with you, this site is wonderful!

[i decided not to work this coming school year until I am feeling better. Now that I have an answer for my illness, I can begin the healing process. However, I feel extremely guilty for not being able to work. I feel like I am not pulling my weight in my marriage, but I can't control being sick. I'm a bit down about the situation. Have any of you been out of work for an extended period of time due to celiac disease? How do you cope with your symptoms?

Thanks, Jen

Sorry to hear you're having it so rough. You've come to the right place for help and support. I remember when I first had to go gluten-free - the constant checking of everything. It wasn't until I came here that I realized I was still probably being cross-contaminated. My wooden spoons were old, (pre-celiac disease) so I finally threw them out this past week. I've been much more careful and now I feel better than I have in a long time! The gluten-free is a way of life now, and will become second nature. Hang in there! With the kids you will have to be super vigilant in cleaning surface areas and washing your hands. No wood utensils or cutting surfaces - can't get them 100% clean. Do you have old teflon or iron pots and pans? Again, those can harbor gluten. You might want to try a multi-vitamin/mineral supplement. The malabsorption part of celiac disease can leave you anemic. And the diet needs to be higher in protein than normal (which I think is 60grams/day). Improvements don't happen over night, it takes awhile for the body to heal depending on the damage and how gluten-free you are able to maintain. Hope this helps some.

[i always felt that my teeth would not last me very long as I was always at the dentist, but since being gluten-free, my teeth seem to have stabilized and I now think they may be with me for a while.

My wife and kids think it is a great idea!