Yenni

I can't seem to handle anything but chicken, fish, ham, fruit and veggie and no matter what other gluten free grain (or potato for that matter). I get heartburn. Feel off.

Would be nice to chat with others that have the same issue.

Or am I alone?

I am slowly losing weight too. I am also 5'3" and I now weight 115 lbs. I weighed about 125 last summer. I actually gained weight when I was real sick and I started out weighing 115 before that...so so far I am not worried. But I wonder how to stop this if it keeps on..

I have been taking the Kirkman Labs prenatal vitamins for almost 2 weeks now and so far it is going pretty ok. I have started out with just taking one pill instead of two to start out easy. I am going to start taking 2 tomorrow. But so far so good.

ETA: I am doing real well on the Kirkman Labs prenatal vitamins. I am so happy!!! Thanks everyone!

It took me a looong time to stop feeling sick too. So hang in there. You might have other intolerances too, that keep on preventing you to get well. I had others that took me a while to figure out.

I was tested through Enterolab and they have tests for other stuff than gluten, maybe you could get one of them testes done or just cut out the most common ones for a while to see if you get better.

I think that if your body has been sick and dealing with this for a long time (which I am sure my body had) it takes a longer while to feel better. So don't give up.

Supplements is a good idea. Make sure they are safe.

Also make sure you do not unknowingly cross-contaminate yourself some how. Toothpaste, lotions, using same kitchen stuff as is used with gluten. Stuff like that.

Like you it took me years to get my diagnosis and many doctors.

Do not give up. It took me a looong time too. I felt the same frustrations. I recognize it so well.

I think my daughter is doing that . . . She reacted immediately to wheat the one time that I knew she was glutened. Other times she reacts and there is no apparent cause. She's eating the same thing she eats everyday . . . almost. We know she reacts when she has a lot of blue dye but not a little. Now I'm wondering if the blue dye "builds up" until she finally has a reaction (much less of a reaction than gluten but the same type). Her brother was the same way with red dye but his reaction was a rash. If he had a little, no problems, but if he had a lot within a short time (within a day or two, not one sitting), then he would get a rash.

I know Dr Fine (behind Entero Lab) talks about delayed reactions when eating gluten, so it must be able to happen with any of the intolerances you would think.

I actually thought it was quite common, but not many answered this, so maybe it isn't.

Sure can make things harder trying to figure out what causes it huh? I have been trying egg so many times now and always end up getting real sick in the end, so now I am pretty sure it is egg...I think. It just has to be.

My sister in law is having a bridal shower with cupcakes as the centerpiece for each table! I mean, does it have to be that much in our face? I almost wish I hadn't been invited so I wouldn't have to make the choice of going and getting sick, or just not going and looking bad. How can I go to a party that revolves around cupcakes? I refused an invitation to go to her home recently, knowing it would be a gluten-fest. Sure enough, my husband went and said they gave him brownies.

I read somewhere that Celiac disease makes you find out who really cares and who your true friends are. I think that is true. You really see who cares for you or not. I don't expect people to make big efforts for me, but just a little question if they can do something for me or just a little thought on how to try to make me feel welcome or thought of makes a big difference.

I have learned from this that some doesn't have a clue on how to try to imagine what it is like to deal with a disease like this. I don't expect them to know, but at least try a little.

Even though we had the opposite thing happening with the bridal shower, I know how hard dealing with other people can be.

I never thought about how much the world evolves around food in general before I got Celiac disease. Food commercials, social gatherings. My husbands family wouldn't know what to do for social gatherings if it isn't about food. They would panic.

You know, I kind of had this discussion last night, or a similiar one. I said I have to stop resenting celiac disease, it's going to be with me for the rest of my life! I have been gluten free now for over 7 1/2 yrs. In the beginning, it was wonderful, I had my life back! I didn't have to worry about having a stomachache every night, the diarrhea was gone for the most part--I didn't mind giving up my sandwiches and I could still have my noodles in the form of Tinkiyada.

Fast forward to now and add all the other intolerance's that I have now and you r food sounds nice to me. I use salt and pepper, haven't used any other spice in so long I can't remember. I can't tell you the last time I had a piece of red meat. I only can eat chicken breast, and some fish now. I have to be very careful with my veggies, just green beans, peas, occasionally carrots--oranges, apples, pears, a few grapes, maybe occasionally a banana. I never had to give up my dairy and I have always been very grateful for that. I eat no grains except for my 2 caramel corn ricecakes every morning for breakfast with peanut butter. We are not sure why that little bit of rice doesn't bother me, but we are not arguing the fact. For some reason, I can eat potatoe chips too and we don't understand why, but we aren't arguing that fact either.

No other grains, soy, corn, and rice constipate me, plus make my tummy break out in an ugly rash, oats have always been just as bad as gluten for me, no red meats, no nightshades (tomatoes make me sick in 20 minutes and I do so love them, mushrooms are just as bad and a favorite), no cruiferous veggies---------plus non of the grains can touch my skin without hives.

As diseases go, celiac may be the disease of choice, so to speak--a diet change can be the only thing you need do to feel better. It can be much more forgiving than other diseases, yet for some of us, it's not so easy. I do not wish celiac on anyone, and I certainly do not wish I had something else, yet I never, ever say it's an easy disease to deal with--it's not. There are so many levels of this disease, so many unknowns to it still. I learn more everyday in the forums I read in.

What we need to remember is: celiac disease can be fatal. We need to be thankful we found out what is wrong and that we are dealing with it and have our life back. Taking away a some spices is nothing compared to living a healthy life, is it? Check out some Mrs. Dash, some are gluten free and maybe you can try for additional flavor.

Deb, I seem to have many of the same issues as you. Very limited on food. I don't get the rash, but so many things besides gluten make me sick.

What I miss the most... I wish I could eat cheese actually. I wasn't a big fan of cheese, but I miss it now. I wish I had less fruit allergies too, so that I could eat all of them.

I dream of a gluten, soy and casein free home. I live with my husband and his in laws and they take care of three grandchildren quite often during the weeks. There are always crumbs and stuff around. I have gotten super paranoid and have to eat on my own stuff and can never use the surfaces in the kitchen to make food. The little 3 year old grandkid often eat bread and other stuff in front of the TV and not washing her hands after. This house is a danger zone for me. We are moving out later this year and I am definitely gonna enforce a gluten/soy/casein free home. I would love to be able to just live normally without watching everything I do.

I hear ya! I have had very little understanding from my husbands family and for them life is food (nothing I can eat). The hardest thing in all of this has been dealing with them all. Some of them even chose not to invite me to dinners/events/parties because I can't eat what they offer (my husband and I are totally out of the loop since I got my diagnosis- I was even not invited to a bridal shower because of this; my husbands brother got married in December). They don't wanna deal with it at all and there isn't a thing I can eat on the table when there are family dinners. I always bring my own.

(I should add that I have told people I'll bring my own food and they still don't invite. Maybe they feel bad having me there not being able to take part in full. I do think it is bad not to even be able to make my own choice if I want to go to a bridal shower to a future sister in law or not and instead having them decide not to invite me (they invited my other sister in law and my mother in law).)

Yes, I was super tired for a long time (before and after I stopped with gluten). I used to get really bad fatigue spells. I felt I just had to take a nap. They slowly got less and less common and I don't have them now unless I get cross-contaminated. But even then not as bad as they once were.

I felt spacey for a long, long time after I stopped with the foods that made me sick. I think I had additional intolerances that took me longer to figure out that prolonged the process though.

I get spacey every time I get cross-contaminated now.

I seem to get one reaction out of gluten and dairy (the strongest and fastest) and soy gives me tons of heartburn usually... Then there is corn and egg that seem to have a slower reaction. I seem to be able to do fine on them for a few times in a row and then it hits me bad one day (I usually get enthusiastic about being able to eat them so I keep on every day until I get that bad reaction and remember why I stopped all the other times I tried them again- hope never dies.. ..or I am just stupid.)

Anyone else recognize this "phenomenon"?

Some more about this...

My husband went by a whole foods place today and they carried the Sunbutter brand. The jars said the sunbutter is made on the same machines as is used with soy. I am starting to think Enjoy Life's food isn't safe for soy intolerant people..

I ordered the Kirkman Labs's pre-natal vitamins. I had bad luck with their original ones (I got starved and go blood sugar drops real bad), but these are a bit more basic with out the extra stuff in them, so I am going to be brave.

I use Gluten-Free Savonnerie products (shampoo, lotion, soaps, conditioner, lip balm, hand soap, massage oil, bar soaps, shave foam). Both my husband and I have used these products exclusively for a year and a half now and I adore them all.

They have great shipping and costumer service.

www.gfsoap.com

I actually do not use any make up any more. I was never big on it and now I just do not bother to be safe. So I have no help to give there.

I was trying to find the ingredients (and inactive ones) in the Twin Labs pills, but they do not have a list of it on their page.

I sent them an e-mail. Hopefully they will answer.

Got an answer from Twin Labs. I asked about a full ingredients list (saying I have Celiac Disease and more tolerances than just gluten+allergies). I got the reply they do not have a full ingredients list on all of their products but that they are gluten free.

So that is out (I don't do well on a bunch more stuff so I do not dare taking those).

Yes, I was very surprised too. The reason I found out, at first, was because I had been looking for safe sunflower seeds. They seem to always have been made on the same machines as soy, nuts, dairy and everything else (which are all bad for me). So I asked Enjoy Life Foods thinking they might know when they use sunflower seeds in their products and saying their stuff is free from all of that. I asked where they got thier seed so that I might be able to get mine there too.

I got an answer back saying to try the Sunbutter company.

...and yeah, the sunbutter place roast soy nuts too and although they said not on the same machine they could not guarantee that cross-contamination wouldn't happen. And the rest you know.

I find it all weird.

Yes, maybe I am intolerant to sunflower seeds... Ugh.

I didnt see this post b4, but I had a really hard time tolerating multivitamins when pregnant, including the chewables. I ended up taking B12 and folic acid, calcium, and yellowdock capsules instead of iron. My midwife said that yellowdock helps you absorb the iron you are already consuming. My last 2 pregnancies, I was also told to drink a pregnancy tea (which actually came from some very christain herb farm which had a website) which honeslty seemed to make me feel a lot better.

Interesting. If it doesn't work for me finding vitamins I'll remember this. Thanks for the info.

I use organic ones too. I think mine are the Seventh Generation.

Just something I thought of: If you use tampons at the end of period and do not bleed as much, it might be too little blood to use a tampon. Could be a reason to "get stuck" too.

I take Fem Prenatal by MetaGenics. Its formulated to be free of allergies and to be gentle on the system. You may have to order online or ask your doctor or alternative doctor to get it for you. One bottle comes with 30 packets and I take half after one meal and the other half before bed. It hasnt been too bad! Good luck!

Those look interesting.

(although they have Maltodextrin which can come from gluten, corn, rice or potato)

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Isn't it funny what different dosage they all have. Some have tons of this and others have tons of other stuff.

The Kirkman Labs actually seems to not have that much in them (in a good way). Maybe it would be a good idea to give those a try...Less is better when it comes to me I think.

I am going to print the ingredients out and bring them to the ob-gyn tomorrow and see what she says..

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I have talked to my friends in Sweden (where I am from) and none of them ate vitamins. Some ate Folic Acid for a while in the beginning, but the rest weren't even told to eat any. They aren't as big on vitamins over there. I guess they check levels during pregnancy and some have to eat Calcium and Iron if needed. The babies and women seems just as healthy anyways.

Different cultures.

i have trouble taking vitamins as well. i went to a nutritionist who put me on Twin Labs multi vitamin and a folic acid supplement. I take at least 800 mg. of folic acid a day. The Twin Labs brand are supposed to be very allergy friendly and easier to absorb/digest. So far, they are the only ones I can handle.

Good luck!

I was trying to find the ingredients (and inactive ones) in the Twin Labs pills, but they do not have a list of it on their page.

I sent them an e-mail. Hopefully they will answer.

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I talked to my ob/gyn and she doesn't like the fact that I can't take any. So I need to keep on looking and trying.

I have had really good luck with this brand up until now, maybe...

I started getting really bad heart burn a while back. I couldn't for the life of me figure out why. Then I saw that this brand has started to make more products...and I am thinking to myself that maybe I am getting sick because of this.

They seem to get their sunflower seeds and sunflower butter from a company named Sunbutter (I asked and if she understood my question right this the place). I am intolerant to soy and this company also roast soynuts in their facility. I called them and ask if it would be safe from cross-contamination and they couldn't promise it couldn't happen. I decided to try their roasted sunflower seeds anyways (no longer selling those it looks like) and got sick every time I tried them (had to make sure it was them).

Now Enjoy Life Foods are making a sunbutter bar...and I am sorta wondering if that is what making me sick.

They are supposed to test their products, but I am not sure if they test for soy.

This is a long shot and I might be wrong. I just wanted to see if anyone else has had problems.

Here is a listing of gluten free drugs, but I can't vouch for any casein free.

Open Original Shared Link

I have that list. Been looking at it. Nothing about Casein there though. It seems hard to find actually.

I have tried the pharmacy here but they are a joke. I don't know how many times they have been completely oblivious and have said they don't even know how to find things. Useless.

When I had my daughter they wanted to give me Percocet, but opiates - synthetic or natural - make me nauseous and do nothing for the pain. So it was Extra-Strength Tylenol for me.

Get this. The nurses had access to the Percocet at the nurse's station. They had to leave the building and go to the hospital pharmacy for the Tylenol. Go figure.

Anyway, if you can't come up with anything else, Tylenol may not kill the pain, but it will hopefully dull it enough.

I plan on bringing Tylenol (the one I usually take for menstrual cramping). I usually do ok on just one of them so I am so, so, so hoping I'll be good on two (1 gram all together) of them instead. I'll bring my heating pad too which usually helps real well with pain.

I have a pre-surgery meeting tomorrow with the doctor.

I get really drugged by pain killers normally.

Once they gave me Benadryl+Droperidol+Ketorolac at the ER and it was the worst experience in my life. I was so drugged I could hardly talk or walk and I got side effects so that I felt I needed to move constantly. It crawled inside of me. 6 hours of that. After that I am VERY paranoid about drugs.

Nobody.. It was worth a try anyways.