nettiebeads

Please go gluten-free! I remember when I first started out on the gluten-free diet, I'd get the cravings so bad that I'd knosh on anything. Then spend way too much of my time in the bathroom regretting it. Eventually, by going gluten-free and staying that way, the cravings will subside. Replace the urge to snack with any good fresh fruit or veg, or pickles will really overwhelm your tastebuds and numb them up. I'm finally (after years of doing w/o) working on a gluten-free pie crust dough. I've even made pies for the family that I can eat and no one could tell the difference. (I could, but I'm a perfectionist when it comes to pie crusts). Working in the kitchen can be fun when it's your own hands doing the baking and experimenting. And even if it's not 100% satisfactory, the food can be reused as breading or in bread pudding or a trifle. But you do need to go gluten-free. A false negative is way to common of an occurance to be considering yourself as a non-celiac, or a non-gluten intolerant.

Annette

Hey, so I'm new here. And I was thinking about a dream I had the other night.

I dreamt that I was sent to a home for troubled teens, because I wouldn't eat gluten products. And for some reason, I was suddenly considered a nuscense (sp) lol. it was quite strange! And they kept trying to get me to eat spaggeti.

I was wondering if anyone else has had dreams about being not excepted for it and how you dealt with these types of dreams.

Jilly Bean

The subconsious is so different than the waking mind when it comes to processing stuff. I used to have dreams about eating something I'm not supposed to have. I'll eat a piece of wheat based something in my dreams and then remember I have celiac and spit the food out and hope I didn't get enough in my system to make me sick. Then I'd wake up in practically a cold sweat. But since coming here to the forum and talking about celiac and coming more to terms with the disease the dreams are much farther apart and less intense. Most of the time. But it's just your subconsious dealing with your lifestyle/eating style change and integrating your new gluten-free life into all parts of your psyche. You're probably afraid of coming forward with not being to eat "normally" and being ostracized for it. You'll learn to deal with having celiac and eventually be quite proud of yourself for standing up for what you know you have to do to maintain optimum health.

Annette

The tiredness could be due to a lot of factors. What is the protein level in your diet. A diet higher in protein than a regular diet is recommended to those with celiac. Have you been able to get a nutritionist to help you with your diet? Have you been through everything to eliminate gluten? Not just wheat, but barley, rye, malt, spelt, triticale, oats... When the gluten is completely out of your system, you will notice a difference, promise. Have you eliminated dairy? At the beginning most celiacs have to eliminate dairy until the villi heal. Then it can be tried again in two to three months, depending on healing rates.

Annette

I think I've heard that Ibuprofen (Advid, Motrin, etc) is bad for people with stomach problems. Have you heard the same thing? Do you take Acetaminophen (Tylenol) for aches, pains, cramps?

It depends on the situation. I took a combination of advil and aspirin for a long time because of pains associated with my cycle. After 4 yrs of that I developed an ulcer. And eventually had a hysterectomy 3 yrs after that (Going to a male gyn is like taking your car to someone who doesn't drive). Anyhow, advil, aspirin, and Tylenol all work differently. Advil and aspirin are NSAIDS, which help to relieve inflamation. tylenol is a pain reliever. For my migraines, I take a combination of advil and tylenol. I don't mix advil with aspirin anymore.

Annette

Hi Annette,

What is ROM's?

Sorry, ROM - Range of Motion. You would periodically straighten out your knee, almost hyper extending it while sitting in a chair, and then pull back as far as you can to keep the joints lose.

My dr agrees with me that the tests just aren't sophisticated enough yet to get all of the answers. But you've proved your point with the diet challenge. I still can't understand why so many dr's want to be able to fix things with meds or surgery or some sort of regime while the diet works wonders!!! It's a good thing you have enough sense to listen to your body. I never had any tests, just the diet challenge and that was enough for me. Later I might get my gene testing done, and my dd's too because she's having some problems and I just want to have a better understanding of what might happen to her in the future.

The women in my family have a history of knee aches. Walking is the best for me, but like you when I'm glutened they are super achey! Usually some ibuprofen works. My mother swears by that glucosinate/chro-something something. But that's also hard on the tummy. Do you do ROM's during the day?

Annette

Have you tried citrucel? My gi recommended it (he uses it) and it's gluten-free. It helped me tremendously when I was having real problems with constipation. After I got rid of the hidden gluten in my diet, I haven't had any problems except when i eat too much cheese. I'd start out with one capsule in the a.m. and one in the evening. If that didn't do the trick, then I'd up the dose; the max is six caps a day.

Hope that helps. Let her know we're rooting for her. And I understand about family not being understanding. My db and his wife at first were real understanding, but now they think that if I bought their nutritional supplement ($70/month) I'll be cured so it's my fault now that I can't eat gluten. GRRR! But the way you're trying to help her is amazing. I hope something works soon for her.

Annette

My co-worker is Asian and she's going to take me to a market that she goes to tomorrow. I know that I've heard people say that Asian markets are good for people with celiac disease because a lot of their stuff is naturally gluten free. Do you have any ideas for stuff that I should be on the look out for?

anything fresh!! Ooh, you are so lucky! Of course, wonton wrappers and such are out. Read the labels (if you can) on the sauces and stuff. Have your friend translate for you. If they have a good soy sauce (not made with wheat - just the fermented soy) snap it up!!! That would be my plan if I could go.

Okay - this past week we have had:

Chicken Fried Steaks - rice flour mix

Mixed frozen veggies with gluten/dairy free margarine

Lettuce/Carrotts at almost every night meal

Tinkyada Pasta with Ragu sauce and canned mushrooms

Jambalaya with Hillshire Farm smoked sausage/frozen shrimp/canned tomatoes and other fresh veggies

Soft peanut brittle - homemade by another person - no gluten that we know of

junior mints

Yoplait yogurt

Lactose free milk

Carrots

Celery

Black Olives

Home made pickled beets

Roast Beef on rice bread

Raisins/nuts

An apple or two

Banana

Water/diet coke/decaf coffee with gluten free creamer

Products that she uses on a daily basis inclue Suave shampoo and conditioner (the word wheat or barley are not in the ingredients), she uses that Garnier Fructis (in the green bottle) once in awhile to, a suave body lotion, some cologne from the dollar store, no ingredients listed on it, she uses Nutura Avon face cream, Avon lipstick (we understand the all regular lipsticks are gluten free), I can't think of the foundation name - I normally don't pay attention to these things, since I don't use these things, but I am trying to figure this out.

I'm not sure what has been going on in her body, she was fine all summer, just these past two months or so that have been so rough on her, physically and emotionally.

We have eated at a steakhouse probably four or five times this past month. We eat there normally, order no seasoning on the steak. We eat there a lot, and have had no problems that we can tell. We take our own Kraft dressing for the salad and our own margarine for the potato. They probably put salt and pepper ont he steak and it is grilled - they use Season All on all the steaks that they cook, but Season All is suppoed to be gluten free. I suppose, because of the grill, some of tht seasoning may get on her steak.

Those Introlab tests are very expensive, but I think this is something we should do. I want her tested for gluten, milk/casein for sure, so I suppose I should order the most expensive one? I am hoping my flex plan can cover the cost of this.

Thanks for all your responses so far, we will get this figured out sooner or later.

Mr. BamBam

My experience - was the jambalaya a mix or from scratch? I went to a restaurant and fortunately I had the dining cards - was going to order the beef tips but was told that the meat came pre-marinated with teriaki sauce - it wouldn't work for the gluten-free diet at all! I was watching "modern marvels" on the history channel and found that now days beef in some processing is injected with flavor enhancers and tenderizers. Of course, no telling what's in those. And of course, even though the receipe for the candy was gluten-free, if it wasn't in a controlled invironment, cross-contamination would be a definite possibility

I'm curious about the reactions you all get if you get glutened. I myself have only been gluten free since Nov. 25, with just a couple of slip-ups (a bunch of those blasted Xmas cookies I made for the family found their way into my stomach ). Anyhow, I'm just coming out of 3 horrible days in which my reaction or whatever it was consisted of horrible stomach pain and aching muscles, especially joints. A bit of nausea too. And slight dizziness one day. One night I couldn't sleep at all, I lay there the whole night awake. Does any of this sound familiar?

I've been taking L-glutamine faithfully and it has cut down on my physical reactions immensely (the D and C). But I still get real achey legs and horrible fatigue with some brain fog. The L-glutamine really does help with gi health. It was mentioned quite awhile back by one of the regulars.

Annette

So what do you do about communion now Annette? I've been wondering about what I'll do when I go gluten-free.

Susie

I'm Lutheran, so I'm able to substitute any non-leaven cracker for the communion wafer. I've been using Ka-me rice cruunch crackers, plain. I would break one up and give a small portion in a wax paper envelope that I'd staple together to my pastor for him to bless with the rest of the communion wafers. And only a small portion since the wine in the individual cups is barely more than a sip. I figure anything would work, so long as it was non-leavened. My brother is Roman Catholic now, and I went to my niece's first communion. There they allow everyone to take communion, but of course I didn't because substitution with a gluten-free wafer isn't allowed. There are online places to order your gluten-free wafers, but talk with your pastor to see what is allowed by your church.

Some posters here have leaky gut syndrom. I don't understand that too well, but it happens after your intestines have been damaged for a long time. I use L-glutenate - I read that it is very good for celiacs from another poster on this board. It really does work - I know I got cross contaminated at Christmas at my db house but the physical effects were very minimal compared to previous glutenings. It might help (take it for a month) and it's rather inexpensive - get the regular OTC, not the health food store stuff. And of course, really baby your tummy. You do have a long way to go, obviously, but you will get there. Another thing that is very important to celiacs is the amount of protein in your diet. Do you have a protein supplement? I don't know what to recommend because of your other food problems, but if you could find one that you could tolerate it would probably help immensly with your fatigue levels. I would also recommend eliminating milk products, if you haven't already. You may be able to eat them again later, but right now they are too hard to digest. Maybe you could pm tarnalberry and/or KatieUSA. They are much more knowledgeable about the lesser known aspects of celiac disease than I am.

Annette

I wish I could afford to take off for the three months covered under FMLA- I'm beyond tired a lot of days. Instead I found a compromise I'm working a 4 day week instead of 5 with a guarantee of 3 days in a row off. I've worked with HR to sign up for FMLA so I will be protected. I'm trying this for 6 months. Right now, I am always having to push myself to get up, get dress then get to work and of course push myself to work at work. I'm starting this new work schedule Tuesday. I'm praying it works.

That sounds like a very good plan. How long have you been gluten-free? How long were you sick before dx? And are you sure you've eliminated all gluten? The crushing fatigue plus the mood swings are the worst symptoms for me. I always feel like I should get so much done around the house and when I've been glutened I'm in bed as much as possible for at least three days. Frustrating, so I do know how you feel. I hope your recovery is quick. Please feel free to ask the board anything - there is such a wealth of knowledge and experience that I've never seen anywhere else.

I joined eDiets almost a year ago and have struggled with the menu choices that long. I wrote thier nutritionist on a couple occasions, requesting to have a gluten free menu but they just give a run around and say they are thinking about it...it's in the discussion phase. I also made the suggestion on the boards that just as they have other diet restrictions, like salt, red meat, soy, fish, and so on, that a non-gluten category should be added. Others have backed me up, and requested the same thing from the dietician in letters. One person I talked to told me they had not plans to add gluten-free options.

The only option they give me, is to use a program on site that looks up the nutritional choices of every single food. I can do that offline! What is the point of setting up menus that you cant use? I guess I'm just ranting here because I have run out of patience with eDiets and want to make sure any other celiacs with weight to lose don't assume they will work around your issue. You will be on your own. The emotional support is good but that is only part of the program and you have to pay extra for that.

End of vent.....

Janet

Thanks for the info. I was afraid of that. They can modify for diabetics and others, but those with celiac disease are left hanging in the breeze. Personally, I was thinking of the glycemic index.

Is there any connection with cold sores and celiac disease?

Thanks

Cold sores or herpes simplex 1, are caused by a virus. I've had them since I was 5 or 6. But what is connected (I think) is the amount and severity of outbreaks and celiac. For awhile when I was under stress and I know I was cross-contaminated (family of 4 kids) my cold sores would be quite severe and come one after another. I even had to get prescription meds once, they were so severe. But since my stress level has been way reduced and my diet has been cleaned up, my outbreaks are few and much less sever.

Has any one had to quit work to recover? Sometimes I find it very hard to put in an eight hour day because of the way I feel. But if you don't work full time it is hard to have insurance, which is what I need right now. When I am at work I never know when my stomach will act up, which only adds to the stress of working. I would like to work at home, but it is hard to find anything that pays well. Any ideas?

I am slightly versed in human resources. How big of a company do you work for? If it has over 50 employees you would qualify for leave under the FMLA. I understand about your worrying about insurance - can't be without it! My dd is and I'm paying her med bills while she's in college. How long have you been gluten-free? Are you still getting glutened from hidden sources? Let us know how you're doing.

Annette

Oh yeah, that is not at all unusual. My symptoms vary to right off the bat to 24 hours, and then the symptoms vary so it's hard to pinpoint the culprit. As a matter of fact, it took me months to realize that the styrofoam tasting wafer at communion was wheat! DUH! Now my symptoms are more neuralogical (brain fog, headache, crushing fatigue) than physical. The D has turned to C. That's what makes this such a 'fun' disease. Hope you get your answers soon!

Annette

Today is exactly 3 years that I have been sick. Its a sad thought, knowing that at the start of every new year, I have to remember all the crap I have to deal with for the rest of my life... :~(

~lisa~

I'm sorry you feel that way. I've been dealing with celiac for 9 years now. It's a matter of attitude - really it is. So long as I haven't been glutened, I feel just about normal. I see a couple of ladies at work that are younger than me who are in pain nearly constantly from rhumatoid arthritis. And on cold rainy days one of them can barely walk! See, matter of perspective. Learn to look at the positive - I am much more careful about my nutrition and sometimes I have fun trying to create substitutes in the kitchen. Did a really great mock chocolate graham crust for cheesecake not too long ago. Yes, you are different from others regarding your diet, but you have a great resource here in this forum for help and sympathy and understanding.

Annette

does anyone know if the Walmart brand, Equate, complete multi vitamen is gluten free?

Don't know about the multi-vitamin, but I do use Equate maximum one daily (multi-vit and mineral) and haven't seen anything on the label indicating gluten, nor have I had any reactions to it.

Hello to all of my new buddies...

Let me introduce myself... Wife & Mom ( of a baseball team) 40 yrs old, farmer, preschool teacher.

I have just been diagnosed with celiac disease. I really don't know where to start. I have always been on the large framed side of fashion- (5x5) , active, and ALWAYS have had a nervous stomach ( with alot of other diagnoses in my life- depression, narcoleptic, asmatic,bypolar etc. Last month I was admitted into the hospital for dehydration, (didn't eat for a week- lost 20 lbs). It took them another week to realize that my gulbladder was shot- ( another 20lbs lost). Then after 3 more days they took it out (gulbladder).

I was then told I had celiac disease. Thats it. I have been doing well on "trying" to follow the no wheat etc- diet. but am Very hungry!!!

I have lost a total of 47 lbs (since Novenber 19th 2005) and in my community there isn't much to help my with my new lifestyle.

If celiac disease diet can help me with alot of "my other" prob... I'm IN !!!

I am not one for taking medication and don't!!

Is there anyone who can help me be the healthier ME?

thanks Miko

Hi and welcome to the board!! The depression, asthma, bipolar and your gallbladder problems may have all stemmed from undx'd celiac disease, or maybe they caused the celiac disease. Anyhow, you are already on your way to a healthier you. But the problem is no wheat diet means you can still be ingesting gluten! You also have to eliminate rye, wheat varieties like triticale and spelt, no oats (I'll explain in a min) and barley and malt products as they stem from barley. Oats - an absolute verdict still has not been reached but this is the latest on oats: If produced in the USA by large companies (ie Quaker) they are almost certainly to be cross-contaminated and so avoid them like the plague (or gluten). There are some brands that can be ordered via internet and guaranteed to be free of cross contamination, but you may still have problems. The protien in oats is very similar to the gliadin protein that triggers the celiac response, and some people are sensitive enough to have a celiac response to oats. I'd hold off on them for awhile. I don't know where you live, but plenty of food stuffs can be ordered from the web. But, if you take your diet down the the basics - meats, veggies, fruits, it's not too bad and you can build from there. Hope that helps. Oh, and the hidden gluten - check your lotions, shampoos, cosmetics and such for gluten - usually wheat starch, but sometimes oats like in Aveeno.

Annette

anyone have a suggestion as to a good gluten free baking recipe for me to start out with----something that is more likely to work out for a first-time gluten free baker? i hate to discourage myself right off the bat with a baking failure.LOL!! i have "the gluten free gourmet bakes bread" and "the gluten free gourmet cooks fast and healthy" and my sister loaned me "gluten free 101".

christine

I wouldn't worry too much. Even failures can be reused as bread pudding or trifles. Quick breads and muffins are usually pretty safe.

Hi Candy! and welcome to the board! And congratulations on taking the initiative to take care of yourself. Celiac, treated properly, is no where near a death sentence. And as far as other things considered, you don't have to take expensive meds for the rest of your life. You have done what's called a diet challenge which is a very valid diagnostic tool (that's how I was dx'd 9 yrs ago by my gp) and should be recognized by any one in the medical field. If anyone asks you to go back onto gluten to get a different test done, refuse. Anyhow, the floaty stools are from malabsorption and usually have a high fat content, and are very indicative of celiac disease. Now all you have to do is watch out for all of the hidden glutens in other areas besides food - lotions, shampoo, conditioners, hair sprays.... But feel free to post any questions and be sure to read through a lot of the older posts - there's a wealth of information here. As a matter of fact, I've learned more in the four months since I've joined than in all of my years with celiac combined!

Annette

Deat Nettiebeads,

Thank you for the welcome. Yes, too much protein can make me feel creepy, and I appreciate the reminder. This is Day 3. Even tho I am eating starches: rice, corn, potatoes, I am CRAVING wheat! The taste and texture of it! The craving tells me that I am allergic or intolerant.

By the way, Nettiebeads, I love beads and do lots of beadwork.

Janep

Ah, you're the first one that got it!!!! My bead corner in my workroom is getting real crowded. I may have to cut back on my sewing material ! Can't live without my beading or my sewing. I actually have three comissioned pieces to work on this coming month. Three tumbled nuggets to be wire-wrapped, which I've never done, and the necklaces to put them on. The lady trusts me for my bead stringing, she's always admiring my peices when I wear them to work. Taught myself to do loomwork when I was 8 or 9. What do you like to do? PM me if you would like. And where are you located?

I too got zapped somewhere over the holidays. I made seafood and was so careful not to bread anything and all sauces were made by me. I can't figure it out, but boy... are my intestines mad at me!

I know that that is SO frustrating. Somebody must have managed to c-c you somehow when your back was turned. Anyhow, hope you are feeling much better real soon!