Not Tested For celiac disease

[sabrinajanae]

hi - I have been tring to do a gluten-free diet for about 9 moths now. IT is so hard and it sucks when you cannot eat papa john's pizza or things at other people' s home when you are a guest. I ahve had a history of stomach aches, bloating, diarrhea, constipation etc since as far back as I can remember. I am 28 and I remember having the sever stomach probs at 14 y/o. I was told I had IBS and stil take bentyl as needed. I ahve not yet been tested. When I started to go gluten-free I felt much better (less stomach aches, bloating) and needed the bentyl probably only 25-45% of the time. Which is good b/c the bentyl makes me very drowsy whcih is not good at work. My stomach does get upset with stress though. I used to eat bagels, wheat thins, 100% whole grain cereals, breads etc. And I always felt miserable.

Do you know if I had a gluten food on monday could I still be feeling the effects today (thursday). I am assuming I have an allergy to wheat or gluten b/c as I said I do feel better gluten-free. I also have night sweats now and again. I thouhgt maybe I was getting the flu or fighting a bug. But it has happened a lot over the holidays and I know I was not eating clean. I also have on againg off again "blues" especially in the winter-- could be "SAD". But I started my mesnses when I was 18 - my mom had made me take estrogen to get that started. I am trying to figure out if that could be b/c of a gluten allery or just b/c I was so active (swimming competitively, heavy exercise). When I was an infant my mom had a very hard time finding a formula that I would not thropw up and I was collicky.

So even though I have not been tested does this sound like I may have either an allergy to gluten or celiac disease? Please help or adivse. I am so tired og the gluten-free diet -- the food is so expensive, The bread is sooooooo small and the only that I think tastes halfway decent sticks to my teeth!!!!

Thanks so much...

sabrina

[lonewolf]

Hi,

Welcome aboard! It does sound like you have Celiac or gluten intolerance. If you feel better gluten-free, then by all means stick with it. From what I've experienced, read, and heard, a reaction to gluten can last anywhere from 2 days to 2 weeks. So it's very likely that you're feeling the effects from Monday.

Also, have you eliminated ALL the "hidden glutens" in foods, toothpastes and other personal care products? I knew I had a problem with gluten, but didn't realize I was still getting small amounts in things like rice crispies, rice dream and sharing a toaster with wheat bread. It will make you feel even better. As for being tired of gluten-free, stick with it and keep experimenting with different foods. I make pretty much the same type of food as "normal" people, but with alternate ingredients. It does help if you like to cook.

Good luck!

Liz

[marciab]

I have to agree with you about staying on this diet. It is really hard for me not to drool when everyone around me is eating all these good smelling foods that I used to eat. I swear I can smell the pizza in the Papa John's commercials. I've been on the gluten free diet for 5 months, but the food elimination diet for 6 months. Overall, based on my results, I am staying gluten free. I've been adding things like crystalized ginger and spices to my food lately for variety. Good to know it could take up to 2 weeks for a reaction. Good luck Marcia

[pattic]

ahh, c'mon, it's not that bad ~ yeah, right (LOL!)

I'm also a vegetarian but I guess I'm lucky since I like nutrition and cooking.

I make aussome desserts - chocolate mousse, crumb cake, cinnamon buns and a really great chocolate cake that is so rich, dense and yummy that I don't miss other stuff. (email me and I'd be glad to share recipes with anyone!)

It is a tough diet, but the bright side to it is ~ you don't feel awful anymore!!!!!! I gladly stick to gluten free just to avoid all of the nasty physical symptoms, which in turn make me a witch to be around! LOL

I have a joke in my house that my hubby has come to know. I ask him, 'when I'm on my death bed what are you bringing me?' his answer (after years of coaching him!) 'PIZZA, BAGELS AND CINNABONS!" LOL

I may be gluten free - but certainly not humor free!!!!!!

Check around for pricing. I found rice pasta at trader joe's for $1.25 cheaper than all the others.

Hang in there and keep on going.

~Patti in NJ~

[sabrinajanae]

Thanks everyone-- it is hard b/c I have not been tested so I do not know if I have the intolerance or celiacs. I do not wantt to go back on the regular diet b/c i am pretty sure that I will not feel good -- as my stomach has been all jacvked up this week from giving in and having bananna bread monday, a brownie last firday and a piece of bread and possibly vegetable soup that may have had it in it at panera bread.

my doctor does not think I have celiacs or the intolerance b/c I do not wake up in the middle of the night to go to the bathroom. But I have had stomach issues since probably m y whole life, but I remember having issues in highschool with it (that was 11 years ago now).

Does anyone know if we can have malted beverages like mike's light stuff? When I do get a chance to go out with my friends I usually have wine or rum and diet cokes. .. Just an afterthought.

Also has anyone heard of bentyl or dicyclomine for IBS? That is what I take when my stomach hurts and or gets issues. Also at work (I am a physical therapist) I will occassionaly have another PT do visceral therapy on my stomach / intestinal region and that helps so much. They are the ones that initally thought that I m,ight have the intolerance and or celiacs. After doing the diet (when I behave with it) I am not as bloated). Also sometimes I ahve to actually massage my own stomach in a clockwise manner.

Thanks for everyones advice and comments!! Have a good weekend!!

Sabrina (:

[pattic]

you're welcome! I was a cheater at first, but soon you'll come to realize it's just not worth it. I am in the process right now of getting the dna test since I've never been tested either, have had symptoms all my life and have been gluten free for 8 years and other tests won't be accurate.

to answer your other question - no malt. I also like Mike's hard lemonade, but it's not good for us. I stick to wine, rum, tequilla and potato vodka at our happy hours. (gin & tonic was my fav, but no more gin for me)

I don't know about the other medicines you had questions on - sorry.

~Patti in NJ~

[sabrinajanae]

you're welcome! I was a cheater at first, but soon you'll come to realize it's just not worth it. I am in the process right now of getting the dna test since I've never been tested either, have had symptoms all my life and have been gluten free for 8 years and other tests won't be accurate.

to answer your other question - no malt. I also like Mike's hard lemonade, but it's not good for us. I stick to wine, rum, tequilla and potato vodka at our happy hours. (gin & tonic was my fav, but no more gin for me)

I don't know about the other medicines you had questions on - sorry.

~Patti in NJ~

Thanks patti! Thank goodness I like rum.LOL Quick question -- from my postings.. does it sound like I have the intolerance or even celiacs? I have had the late puberty thing (not getting menses till 18, occ. night sweats, or itchness plus all the other stuff I posted above.. Thanks too -- I have always wondered about the malt thing!!!!

very grateful!!

sabrina in MI

[Guest nini]

hey there! My mom said that when I was an infant she couldn't nurse me and they couldn't find a formula that I wouldn't projectile vomit all over the place... they ended up giving me milk with rice cereal mixed in...

anyway, sounds like at the very least gluten intolerance.

I had a thought about going out for friends with drinks, one of my fave drinks is (I believe) naturally gluten free, you may want to check on this, but I believe Kahluha, Vodka and Cream make a nice little white russian drink and it's gluten-free...

I don't drink anymore though out of personal choice, but when I did drink I LOVED white russians!

[pattic]

well, I can't assume you have it, but as everyone says, if being gluten free feels better, than it's worth it. maybe it's a combination of celiac and other things (?). the list of symptoms is long, and varies a lot from person to person, which makes it difficult! if you stay totally gluten free and still have problems, you need to keep exploring other possiblities.

like I said, I'm having the gene test done to be sure. if it is negative, there's no way you have celiac disease and it's ruled out completely. if at least one gene is found, and you have symptoms, it is more than likely you have celiac disease. for me, that'll be a start to know for sure. hope that helps.

patti

[Canadian Karen]

I make aussome desserts - chocolate mousse, crumb cake, cinnamon buns and a really great chocolate cake that is so rich, dense and yummy that I don't miss other stuff. (email me and I'd be glad to share recipes with anyone!)

~Patti in NJ~

Forget giving me any recipes, when can I come over?

Karen

[marciab]

Hi there .. I've been diagnosed with IBS for the last 20 years or so. I am familiar with the bentyl, but not the other one you mentioned. They were giving me Donnatal Elixer (narcotic) for the pain. THey all helped with the pain, but knocked me out. I know Donnatal constipates, but really don't remember if the Bentyl does. I've been drug free since changing my diet 6 months ago. I can't believe your doctor told you that you weren't a celiac because you didn't get up at nite to go the bathroom. Doctors !!!! I also can't believe now that they were giving me narcotics when a diet change would have solved the problem. Hang in there marcia

[Guest nini]

like I said, I'm having the gene test done to be sure. if it is negative, there's no way you have celiac disease and it's ruled out completely. if at least one gene is found, and you have symptoms, it is more than likely you have celiac disease. for me, that'll be a start to know for sure. hope that helps.

patti

they do not know ALL of the genes associated with Celiac yet. There are biopsy proven Celiacs that do not have any of the recognized genetic markers so you can not ever rule it out completely. The testing is still so limited and innaccurate that it can only rule it IN, never completely rule it out.

[pattic]

Forget giving me any recipes, when can I come over?

Karen

LOL-anytime! actually, most of the things I make are easy & use everyday ingredients.

I know there's a section for recipes, but if you like chocolate and can have soy, try this one. I served it to my friend's husband who swore he'd NEVER eat tofu - after his 2nd helping I told him what it was! LOL

In a blender or food processor: blend 1 pkg nasoya soft or silken tofu; melt 1 1/2 cups gluten-free chocolate chips and allow to cool slightly before slowly adding into blender of tofu; add about 1/4 cup maple syrup (to sweetness you like) and blend. Refridgerate.

I love food (although I watch my weight). Two tablespoons of this kills any craving for sweets, chocolate and the feeling of being deprived!

~Patti~

they do not know ALL of the genes associated with Celiac yet. There are biopsy proven Celiacs that do not have any of the recognized genetic markers so you can not ever rule it out completely. The testing is still so limited and innaccurate that it can only rule it IN, never completely rule it out.

....guess I was misled by the lab! still having it done just to see what my results are.

so, basically, there's no way for someone in my position (gluten-free for so long) to ever find out for sure?

maybe we should just refer to this as the 'mystery disease' instead of celiac disease? LOL

thanks for your input.

~Patti~

[Guest nini]

if you feel better on the diet, stay on the diet, you can continue to be tested to rule out OTHER things that are not dependent on the gluten free diet, so it's not like you are completely giving up and saying you don't know.

In my personal opinion, if someone has a positive response to the gluten free diet, it means that they are gluten intolerant. Plain and simple.

The definition of a Celiac dx is if there is intestinal damage. But the only treatment for this IS the gluten free diet and in most cases WILL heal any damage that has been done.

Also, there is no difference in the treatment of Gluten Intolerance vs Celiac, both need to be on a 100% gluten free diet for life, no cheating. So, feel better off gluten? Stay off gluten. Don't feel better off gluten? Pursue more testing.

[nettiebeads]

I agree with nini - if you feel better when you're off of gluten, then stay off of gluten. 100% gluten free. No oats, barley, rye, malt, spelt, durham, tricale (sp?) or any wheat substitute that is still basically a wheat. Check your cosmetics and toiletries. After awhile, when you've been gluten-free and feeling better, you will learn to equate gluten containing foods with poison and the desire for them will decrease. And your tastebuds will "forget" the taste too. I've had celiac for 9 years and can still almost remember what Alex's pizza tasted like (local joint) But I feel SO much better being gluten-free, that I won't risk it. Ever. And I never did have the tests that drs order nowadays. Just the diet challenge was all that my gp used to dx celiac. And I sure don't doubt his dx, nor do any of my current drs. I know what happens to me when I do get glutened -it used to be D, now it's C, with extreme fatigue and brain fog and horrible joint pains. Not worth it. So please try the gluten-free diet FOR REAL! no cheating because if you do have celiac, then you are damaging your body!

Annette

[sabrinajanae]

I agree with nini - if you feel better when you're off of gluten, then stay off of gluten. 100% gluten free. No oats, barley, rye, malt, spelt, durham, tricale (sp?) or any wheat substitute that is still basically a wheat. Check your cosmetics and toiletries. After awhile, when you've been gluten-free and feeling better, you will learn to equate gluten containing foods with poison and the desire for them will decrease. And your tastebuds will "forget" the taste too. I've had celiac for 9 years and can still almost remember what Alex's pizza tasted like (local joint) But I feel SO much better being gluten-free, that I won't risk it. Ever. And I never did have the tests that drs order nowadays. Just the diet challenge was all that my gp used to dx celiac. And I sure don't doubt his dx, nor do any of my current drs. I know what happens to me when I do get glutened -it used to be D, now it's C, with extreme fatigue and brain fog and horrible joint pains. Not worth it. So please try the gluten-free diet FOR REAL! no cheating because if you do have celiac, then you are damaging your body!

Annette

Thansk for all the help!! I have not been able to respond as I moved last weekend and had no internet access. I am trying to be gluten-free... since my slip up 2 wks ago now, I have had belly aches, "D" and other icky things happening. It is kind of depressing to realize that I may have to live this way for the rest of my life. I know once I accept it and seal with it it will get better. But it is just frusturating b/c I like to be an easygoing person (try to be). but I feel like a pain in someone's toosh at the holidays or if eating at someone's home b/c I do not want to come off as picky or high maintenance. How do you guys deal with the inital frusturations and accepting the change in lifestyle (sort of). I know I will (hopefully) feel better once this junk is out of my system.I am so sick of having stomach pains and feeling like I am geting stabbed in the gut with a knife!! IT is no fun and sometimes bums me out. Esp. this week b/c I have not been able to run b/c of the jostling to my insides when they are all jacked up. Not to be gross but I have had floating stools for almost 2 weeks now!!! and I have been going to the bathroom a lot more lately too !!!and it occ., feels greasy... and I have been having low back / sacrum pain!!! I a luck b/c I am a physical therapist and at work we treat each other. I have been treated for visceral stuff in my gut this week and had work on my back / SI region. UGH!! Can someone send me some positive / coping ideas to perk me up. I want to be normal!!

Thanks all... sorry to include gross details.. but need advice. I a glad I have found this site so I can ask questions b/c I do not think my GP (as much as I love her) thinks I have this!!

thanks

sabrina

[marciab]

I've been gluten free for 5 months now. And today I ate lunch out with a group of friends. I was so embarrassed because I was eating food that I'd brought from home, but at least I've reached the point that I am no longer drooling over real food. And no tears either. I'm still working on saying "no thank you" when I am asked if I want what they are eating. But, all in good time. Hang in there Marcia

[pattic]

quote "Can someone send me some positive / coping ideas to perk me up. I want to be normal!!"

positive/coping ideas:

as least we have something that is easily cured ~ all it takes is careful eating! there are a lot of people that suffer diseases that require horrible 'treatments' with lots of nasty side affects! there are a lot of people that are in constant pain with no relief no matter what they do/take. Many people will never conquer their illnesses. At least we have a lot of substitutes available to us and that will continue to increase as awareness expands.

also, if you look under the travel section, you will find that places like disney world, some cruise lines etc actually give extra special attention to people with celiac disease and make us fresh, yummy speciality dishes that ordinary travels don't get! (my hubby was jealous of me in disney/on cruise! LOL)

as far as being normal....I have a local italian restaurant that allows me to bring my own already cooked pasta and they make it into whatever dish I choose. I also bring my own bagel/bread to places for breakfast out. I just found out that the owner of a local chinese place has a son with multiple allergies (I found out when I ordered my dish without soy sauce/flour etc). He makes my food special and separate, I take it home and use my own gluten-free tamari. So far, only a couple of servers gave me a strange look, but oh well! I'm not there to please them anyway and continue to do what's best for me. I also think it's all in the way you approach it ~ nice, polite, humorous. I try to 'match' whatever others around me are eating so I don't feel left out or deprived. My friends/family would question my 'being normal' anyway, and that has nothing to do with celiac disease! LOL

cheer up sweetie!

[sabrinajanae]

quote "Can someone send me some positive / coping ideas to perk me up. I want to be normal!!"

positive/coping ideas:

as least we have something that is easily cured ~ all it takes is careful eating! there are a lot of people that suffer diseases that require horrible 'treatments' with lots of nasty side affects! there are a lot of people that are in constant pain with no relief no matter what they do/take. Many people will never conquer their illnesses. At least we have a lot of substitutes available to us and that will continue to increase as awareness expands.

also, if you look under the travel section, you will find that places like disney world, some cruise lines etc actually give extra special attention to people with celiac disease and make us fresh, yummy speciality dishes that ordinary travels don't get! (my hubby was jealous of me in disney/on cruise! LOL)

as far as being normal....I have a local italian restaurant that allows me to bring my own already cooked pasta and they make it into whatever dish I choose. I also bring my own bagel/bread to places for breakfast out. I just found out that the owner of a local chinese place has a son with multiple allergies (I found out when I ordered my dish without soy sauce/flour etc). He makes my food special and separate, I take it home and use my own gluten-free tamari. So far, only a couple of servers gave me a strange look, but oh well! I'm not there to please them anyway and continue to do what's best for me. I also think it's all in the way you approach it ~ nice, polite, humorous. I try to 'match' whatever others around me are eating so I don't feel left out or deprived. My friends/family would question my 'being normal' anyway, and that has nothing to do with celiac disease! LOL

cheer up sweetie!

Thanks patti -- it has just been a rough last 2 weeks b/c of the flare up from me eating the wrong things, Today so far I am feeling a bit better. You are right there are people that do suffer much more!! There have been other things in life stressing me out as well. I am looking forward to february!! thanks again. I appreciate it!

Sabrina

[grandmae]

Hi there, This is my first time here. I was told that I am celiac just last week. I then came home to do a search on what being celiac meant online. This last Saturday went to health food store to start buying food and was very overwhelmed. I then figured out that all I have to do is change a few items in my kitchen so that I will be able to make my own food. This is going to be fun because I am already diabetic type II and have been for 5 years now. I did read all of the posts that you all have here and am amaized(sp?) at what you all said.

I told the doctor that I had IBS Constipation and that I was very sensitive to salt and vinagar, she told me that I was gluten sensitive. I have a lot of medical stuff going on. I also might have cancer.

I am so swollen especially in my legs and feet right now, I don't know what is going on.

I did start eating some foods that I got from the health food store and have been eating them for two days now, so I guess it will take some time to get my body use to the food. I suspect it will take at least a month to get an idea as to what is going to happen with my body. With all that everyone posted here I am getting the idea that being a celiac is like being diabetic. The symtoms are different for everyone.

I am 47 years old, a wife, mother and a grandmother. I am also very much overweight.

Any ideas?

Ellen

[nettiebeads]

Hi Ellen and welcome. The first thing is to go totally gluten free. You have done that with your diet, but you also need to check meds, cosmetics and toiletries. Give the diet time. After your intestines start healing, then we can deal with the weight. I've been looking for a diet partner as I am 46 and also overweight. Last time on the scale I found out I have 51.5 pounds to go. Ask any question you want here, there are lots of knowledgeable people who are also very helpful.

Annette

[grandmae]

Hi Ellen and welcome. The first thing is to go totally gluten free. You have done that with your diet, but you also need to check meds, cosmetics and toiletries. Give the diet time. After your intestines start healing, then we can deal with the weight. I've been looking for a diet partner as I am 46 and also overweight. Last time on the scale I found out I have 51.5 pounds to go. Ask any question you want here, there are lots of knowledgeable people who are also very helpful.

Annette

[grandmae]

Hi there Annette, I was having a hard time figuring out how to post a reply to your message, I hope I have it figured out, if I didn't do it right please let me know. I myself am 70 lbs. over weight and eating all of the packaged food that I have been eating I am swelling up real good. I am very sensitive to salt and have decided to start making my own food instead of buying everything already made. I know some stuff that we eat I won't be able to make from scratch, but I love to make cookies, pies, main dishes, etc. One thing I do love to eat is caesar salad, I just need to make my own dressing due to the salt content.

My husband and I have been thinking about getting some ensure for the nutritional value. We can't afford to buy a lot of vitamins, etc. We live on about $200 a month and we are on food stamps. We live in Golden, Co.

Do you have any ideas about were to buy the food besides the health food store or am I correct as far as making stuff from scratch? Please let me know.

I did find out the hard way that I quoted you, I didn't mean to do that. I did the quote because I don't know how to reply to the messages yet, please advise?

I guess I am still so overwhelmed that I don't know what to do or think at this time.

Please advise on what ever you think I should do!!

Ellen

[nettiebeads]

To eliminate a quote in your reply, just start at the top of the quote, hold down the left button on your mouse and drag to highlight all that you don't want, or the whole thing to eliminate it. Then hit delete. It's that easy.

I've had a problem with salt since my one and only pregnancy 22 yrs ago. (How time flies!) I retain water like crazy, plus it's a major trigger for my migraines. Think basic. Real basic. Cut everything back to meats and fruits and veggies. How are you on handling dairy? Many times when a person is first dx'd with celiac the villi are damaged to the point that they can't make lactase to digest the lactose in milk and milk products. After about six weeks of gluten-free eating, the villi have recovered enough to digest milk and cheese. I still can't eat cheese like I used to, but I can have some.

Most dressings are gluten-free. There is a website that lists good and bad foods for celiacs. I'll have to find the website for you. There's lots of name brands listed.

As for nutrition, I take a regular multi-vit/mineral from WalMart. Springvalley brand I think. I don't do the ensure (too many calories). I do go to the health food store for gluten-free pasta, or you can use rice noodles from a large grocery store. You can do mexican - it's basically gluten-free, just use the corn tortillas warmed up to soften them. I do buy bread at the health food store, but it's so expensive I just do w/out. Go to your library and see if there are any books for gluten-free cooking. Or have them borrow one from another library if that's possible.

Read all of the previous posts here. I've learned more from this board than I have in the previous 9 years since dx. I do buy flours and quinoa cereal at the health food store, and rice crackers for my communion. I just break off a little piece to give to my pastor. You won't have to make drastic changes in your eating or meals - just a little creative thinking and after awhile it will be second nature. I promise.

And I got on the scale this a.m. I've put 1.5 lbs back on.

PM me if you want.

[grandmae]

Thanks for the information on how to delete, I couldn't remember at that moment.

I have always had problems with retaining water after eating something with salt. One time that I didn't have a problem was when I was working at a hotel as a house keeper, a very physically demanding job to say the least. I was able to eat what I wanted and still lose the weight because I was sweating(sp?) during and after work, eating only breakfast and lunch, was to tired to eat dinner and drank a lot of water, so I lost weight. I am so salt sensitive that I can't eat the normal amount which is 2400 mg a day. I too suffer from migraines due to stress, the weather and not enought sleep at night.

I eat chicken, fish, liver, not able to do red meat hardly anymore. I like some veggies especially in a salad. I have not eaten fruit for a while now, but am going to get back to eating what I am able to eat. Dairy I don't do so good with due to salt. I am not drinking Silk vanilla and I like the taste. I am type II diabetic, have been for 5 years now. I want to make my own salad dressing due to the salt content of what we find in the stores. That way I can control my salt better. My husband wants to try the ensure because he has to take 18 medication a day + 30 units of insulin a day. My new doctor wants to check my blood sugar next time to see if I need to take meds. for my diabetis. I hope I don't have to. I am going to do rice noodles because I did some brown rice pasta today and it was not that good tasting. I do like rice noodles though. One of my first meals gluten free was a mexican dish and it was good, but again the salt content was a lot for me. I tried some bread from the health food store that was in the frozen section, it was $4.00 a loaf, and it was not good at all, so I will make my own. I have found some recipes for breads, etc. online that I am going to try out.

I will reread what everyone has said here to refresh my memory. I did read all the posts here already once and that is why I decided to post here. As far as my communion at my church I will just have to hold my own cracker. I am Seventh Day Baptist which means we meet on Saturdays.

Annette, thank you so very much for your information on all of this, this info. will make it easier for me to make the change. I have already started the change, but with yours and everyone elses help here I will do ok. I just need to get rid of all the salt in my system. I am sure that I need some salt I think for my system.

I do feel better now and not so overwhelmed. I will just be glad when I get rid of the water.

By the way Annette, may I ask where you are in the USA if I am allowed to? If you don't want to answer that is up to you.

Ellen