nettiebeads

  happy4dolphins said:

HI, This is not my first grocery store break down. After an hour, my eyes start going funny and my head has enough. Hubby was with me today and it was helpful, but after a while I'd just had enough. I"d like to not to buy so much of Amy's frozen things and make some more of my own. I"m working on it, but it's hard at times. I"ve been making my own Buttermilk bread from the Gluten free book and that's been pretty yummy.

Saturday I went to a women's expo and they had lots of food there. I knew I was eating things I should and it was so good. I just wanted to be "normal" for a day and have fun with my mom in law ( a good person). But by Saturday morning, the stomach cramps came for the rest of the morning and afternoon. THHHHHHHHHH!!

Nicole

I can relate. Even after 9 years of this, I still envy people with grocery carts crammed with stuff, able to just take anything off of the shelf and not have to read the labels. Sometimes I wish I could tell them how lucky they have it.

And as for being "normal" at functions - I never considered myself normal, even before celiac disease. Just one more thing to make me different!

  frenchiemama said:

Sheesh. I mean, I know it's not a huge deal. It's just something that I didn't do very often before (I'd maybe throw together a sandwich a few times a week, the rest of the time I'd either hit a place on the way in, try my luck with the wheel o' death, or order out). It just gets to be a real pain in my ass to have to think of something different to pack and make the dang thing every single night. What a boring routine. Blah.

I feel that way a lot, too. But I try to think of the money I'm saving - eating out 5 meals a week can be pretty expensive.

  cassidy said:

I'm having surgery this week and will be on a liquid diet and then soft foods for a while. I want to get some soup in the house but I don't have a good list of gluten-free soups. What are your favorite canned soups?

Campbell's select tomato with italian stuff and select Butternut squash. Progresso has clam chowder and Chicken cheese enchilada style (I know, it sure sounds like it would be off limits to us, but they are following the labeling law and I've read the ingredients twice.)

Campbells Chunky has Grilled Siroin steak and Honey Roasted ham.

Health choice has Chicken with Rice and Fiesta Chicken. Or you could make up a big batch of potato soup and freeze it in small containers to use up as you heal.

Annette

  GlutenFreeAl said:

I haven't been told by my doctor to avoid alcohol (although she also told me that most regular cereals were probably ok...), but I'm wondering if it's a good idea while my insides are getting better.

I was never ever a big drinker, but I could definitely drink more in college than I can now. Now, one drink and I'm either immediately asleep or doubled over in pain.

Could it be that we are absorbing too much alcohol?

Well, beer is definitely out, and also beer substitutes like coolers - they're made from malt and that comes from barley unless otherwise stated. I'm having a problem with what you said your dr said about most regular cereals probably being ok. Most regular cereals AREN'T ok. Most are made with malt for sweetening (barley again) and/or wheat starch. You must read ALL of the labels carefully.

And even though I've been gluten-free for a long time, I find that I cannot tolerate grain based alcohol, even though the gluten molecules are supposedly filtered out during the distillation. That leaves me my white wine (allergic to red and champagne), tequila, rum and potato vodka (if I could ever find it in this town)

Annette

  MSFL2 said:

All

Ok been a while since i posted here. I have been in court and lost since i did not have a lawyer and she did. Bunch of other stuff is going on also but i can keep that from you.

Health wise im about the same. Weight is falling of me and im trying to stay away from the gluten. Not easy since i dont have a kitchen and need to go buy most of the food from resturants.

Well.. short update but i would like to let know how i am.

MS

Uh, you lost? Are you free from her legally? Then consider it a win. I hope you don't have to pay alimony or have to deal with her in any way after all this. But you've gained a lot of support here, if that's any consolation. Keep us posted! Have you made a dr's appt yet? Have you written down your medical history and problems and everything in detail for him/her? It really does help them come to an understanding of your situation quicker.

How's the job coming? Inquiring (and nosey) minds want to know. And yes we do have our own lives, but we're pulling for you to come through this.

Annette

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.

What tests did the dr order for the bloodwork. As the blood has already been drawn, why not start him on the gluten-free diet for a couple of weeks and see how he feels? There is a good probability that he has celiac disease, as you are a first relative and have it also. Not to mention the symptoms fit.

Annette

  kevsmom said:

I just threw some skinless chicken breasts and potatoes in the crock pot. When I get home I will throw in some defrosted frozen veggies (oxymoron? I put in a can of Swanson's Natural Godness Chicken Broth to cook the chicken in. Does anyone have any suggestions on what else I could have used?. My son likes it less brothy and more gravyish. I have some Road's End Organics Golden Gravy Mix, but I didn't know if I could mix that up and put it in the crock pot to cook it all day. I thought it might burn.

Thanks for any suggestions.

Cindy

It shouldn't burn if you have the pot on low all day. My dh (ex-chef) recommends a little more liquid in the am when you start out, and it should be fine.

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

Good work Judy! It is great to know that we are being listened to!

Annette

  4tomorrow said:

I have had ongoing diarrhea for six months. I have mild to moderate (sometimes a little more severe) pain above my navel. I had my gallbladder out 8 yrs. ago.

I have tried Questran to see if it was my gallbladder. I have tried flagyl and had a stool o & p. I have tried an IBS diet and I still felt awful. The only time I felt even a little relief was when I ate cream of rice for about two weeks.

I have had a normal colonoscopy and I just had an endoscopy. She said I had duodenal flattening, but I'm waiting for my biopsies to come back. I can't stand waiting though. She put me on Librax, because the bentyl and nulev didn't help with the pain at all. It seems to be helping a little but????

My antigen came back negative, but it was also taken during the time that I was only eating the cream of rice. I tried to tell that doctor to see if it would affect the test but he just brushed me off. I found a new doctor.

Thanks in advanve for any advice or insight. I just can't stand feeling like this anymore.

Have you tried the totally gluten free diet? The fact that you felt some relief on cream of rice makes me suspicious of celiac. That and the (probably mis-)diagnosis of IBS. Since your bloodwork was probably already skewed by the mostly gluten-free diet, you might as well try it. And also, the diet challenge is a valid diagnostic tool. That's how I was dx'd with celiac 9 years ago, and my current dr doesn't see the need for any other testing to rule in celiac. And he made the statement that echoed my thinking - the tests may not be conclusive for a lot of people because the tests may not be sensitive enough in some areas for proper diagosis. He admitted that the medical establishment had a lot more to learn about celiac. (I like him) So try the diet for two to three weeks, listing everything you eat - supplements and all. Go through your toiletries looking for wheat starch or oat (very common). Then try one day with gluten and monitor your reactions for the days following. That should give you and any dr enough information without running expensive and invasive tests.

Annette

  gointribal said:

I am looking for some good vitamins, I've heard prenatal vitamins are really good (as long as they are gluten-free) and I was wondering if a lack of iron can make you cold? I am always cold and I don't know if it’s that or if it’s because I just have bad blood circulation?! I do, however, get really hot when I eat gluten, my face gets flushed and I get the chills (I kind of feel like I have the flu). Can anyone else relate? Oh and my hair starts to fall out if I eat gluten, what’s up with that? Is it a nutrient thing? I have so much to learn…lol…thanks guys for any input!

I have problems with low iron and always cold. I've been told that the iron that is easiest for your body to use is ferrous fumerate. That came from a pharmacist. And your hair falling out after gluten - gluten causes major stress for your body and the hair falling out is a symptom of the stress, and the fact that your villi are damaged by gluten and so can't properly absorb nutrients. So stay gluten free - obsessively even.

Annette

  JKJ said:

That sure doesn't sound corny to me! I feel so blessed that i had 2 different neighbors (one with Celiac ) who suggested my 6 week problem with explosive D might be C -- and in 4 days I was doing better! And have been ever since - so I definitely count that a fantastic blessing that I didn't have to suffer for years of much worse symptoms before realizing what my problem was. I still have not gone for testing - but continuously learn from this message board -- and the celiac site. I know I should be doctoring and getting tested but hesitate to go gluten challenge -or even start sharing with my Dr. -- (who I never in 2 years , have felt quite on the same wave length with (Maybe I need to change Dr's?) Anyway - corny or not - don't hesitate to share your feelings on this board!

I was very fortunate in that I also only had to suffer for about 6 weeks with D before I went to my gp. He had me cut out gluten, two weeks later on my follow-up, I didn't have anymore D; he pronounced me Celiac, go and eat gluten no more. End of story with him - 9 years ago. I've learned more about Celiac from this board than I had in the previous 9 years. I do mention my celiac to my current dr. He doesn't see the need for any more tests. The fact that the diet challenge was good enough for my previous gp was good enough for him. But he did run a series of blood work just to see how I was doing. Everything relatively normal, but my cholesteral is getting up there. That was it. And anytime you're not comfortable with a dr and you have the option to change, it is your perogative, and your health. Just my two cents.

Annette

  MSFL2 said:

Thought i would give an update on the current state.

My health is the same, im watching what im eating and i have been drinking more than i did before.

Soon i have the health insurance and it will give me more right to seek out the doctors i need right now.

Was in court yesterday and they ran me over.

Will write more tonight....

So sorry to hear that. But you're among friends here. The laws and rulings in this country tend to favor the woman. Did you have kids involved? I'm glad you're keeping yourself hydrated. A couple of other things you might try, carefully of course, is ginger ale. If you can't stand the bubbles, then let it go flat. Or Chamomile tea. Can you tolerate pineapple? Thanks for keeping us posted.

Annette

  ebrbetty said:

hi guys, I'm going to make a soup with perdue ground chicken..it says all natural but has "potassium lactate" in it..is that ok? is that lactose

also..my mom got me these great frozen spices at trader joes, they come in little cubes, that you just pop out..very cool..it says all natural, but the garlic and parsley cubes have "dextrose" is that ok?

thank you very much

Betty

It isn't lactose as from milk. It's a derivative of corn (usually) and used as an inhibiter of pathogins. Sounds nasty but safe.

Thank you very much for the time and effort you put in to your research. You definitely get a gold star for today!

Annette

  Jnkmnky said:

I believe the article I posted suggested a COMBINATION of therapies...

I agree - a combination would probably be very helpful. However, I would almost bet that the article was edited for space because it just said depression. It didn't state if it was the blues, hard-core intractable depression, also known as dythymia (what I have) or somewhere inbetween. I wouldn't doubt that excersize and the gluten-free diet might alleviate some of the problems nikki's husband is having, but his sounds like a very serious case that needs medical intervention. What's so fun is that while we know when we are PHYSICALLY ill, the brain can't really recognize when IT is ill. Zoloft was a godsend for me and I sure cannot fault anyone for trying anything reasonable to get his/her life back to some level of normallacy.

And please, everyone, let's watch the tone. Remember, there are lurkers on this board who need help and have questions and I sure don't want anyone scared off for any reason.

  BERNESES said:

OK- did my first "cut" over the last ten days- 10 mg on the Celexa and .25 mg on the klonopin and WOW what a difference it has made. I feel SO much better! No lie- much more motivated, energetic and happy! This is encouraging- it's like Nini says. MD=More drugs. I'm not looking to rock the boat here because I had problems with depression and anxiety long before the onset of my symptoms of Celiac's BUT any little bit I can cut down is a good bit. Thank you all for your input, B

Wonderful news! So glad to hear that you're doing so much better. For me, my depression started when I was 9. I'm sure Celiac just aggrevated the issue. I can't wait to start trying to cut back my Zoloft in April or May. And didn't I read on another of your posts that schizophrenia and celiac might be connected? My mother's brother had schizophrenia. And one of her aunts. I'm pretty definite that the celiac came from her side.

  Roo said:

I was wondering aside from beer, is there any alcohol that we should stay away from ?

Thanks,

Roo

Any of the beer substitutes made with malt. Zima, twisters, the bicardi ones; seagrams and B&J's made with malt. You may not have an immediate result, but as malt is from barley and the product isn't distilled, you will get gluten from it. But on the bright side, I found Frutezia at Wal-Mart in the wine section. It's tasty, inexpensive, and a very good substitute for the beer substitutes.

Annette

  MSFL2 said:

["We like you and dont like you to stop working. We have all had hard times in our life and we will help you out" So they put me up in the hotel for 2 nights and gave me a check for $500 that i can cash tommorow. They know my skills as an developer and i preciate that they will keep me around even if the private life is a mess currently.

I can understand why some people think this is a tale from someone. I wish it was, because mentaly it starts to eat me up . The first thingi will do when im back on my feet is to volunteer at the homeless shelter and give them donations. I have had a taste of this and still do and i dont wish this upon any of my enemies.

Back home in Sweden i would have been more "prepared". I think someone mentioned that her husband was Swedish. Well if you ask him what Social kontoret is he will let you know all the help they could have given me. Unfortnelly I dont have the same rights as an citizen then it is not easy. Not much help i can reach for.

Someone asked about health insurance. yes i will get BCBS on 1 st of feb.

Well i will check the forums from work tommorow again and try to let you know whats going on.

What a wonderful company! Even when things were at my toughest, I would always believe that there was a reason for everything. And sort of totally off of the subject, what part of Sweden are you from? All I know about my family is that some came from around Lake Siljens. Some Grandpa or Uncle was originally named Hanson, Hannson, or whatever, didn't like the commonalitiy of it, so changed his last name to Siljenburg at Ellis Island. The other side is Helstrom, or maybe Halstrom. (it's been americanized, obviously)

Okay, back to thread - Start writing down your history. I mean everything, and now. That way you'll have everything for the dr when you do get to see him. Nothing left out. It will help him to help you. Write down questions, anything that comes to mind. Then your visit will be more productive.

And yes, the extreme stress you endured did not help you with your celiac. That's probably a very good reason your body took such a nose-dive. I'm so glad that things are looking up for you, now.

Keep us posted!!!

Annette

  tiredofdoctors!!! said:

I don't have celiac, but have gluten ataxia. My aunt asked, "can't you just eat a LITTLE cake?" (after repeatedly and nicely deferring the cake) My reply was "only if I want to destroy just a LITTLE part of my brain."

LOL! LOVE IT!!!!

  Jnkmnky said:

Is the sensitivity the inherited gene? I'm neg for all things, but seriously can't have gluten and the longer I'm off it, the worse the symptoms of what was once a bit of gluten here and there. But I'm NEGATIVE. I'm confused. My son has the celiac disease. My other two kids are neg all around. I've read Dangerous Grains, I've done lots of other reading, but I'm getting confused anyway. Sorry if the answer is obvious.

You may not have what is now proven to be the celiac genes. Or the sensitivity genes. There may be other genes involved in this disease that haven't been recognized or marked. And don't ever be sorry for being confused. Even the learned medical community doesn't agree!!!! How are we as lay people supposed to know?

You're listening to your body and taking care of it and your children's needs. That's the most important.

Annette

  skbird said:

I've had a rough weekend and was looking for something to cheer me up. This is freakin' depressing.

Chill.

Stephanie

I know, and I was gone only 4 days. How's the new job going Stephanie? I'm hoping MSFL hasn't given up on us, I sure hope he gets relief and his health back soon.

  Miki said:

I have IBS, as the doctor's diagnosed it, but instead I have Celiac. The past couple months I have not felt 100% at all for two months! So, I have taken out Gluten and wheat, gosh is it hard. Do you have any ideas about going out to restaurants? A chef card? How long did it take your body to get used to not eating bread?

There's a link somewhere for the triumph dining cards. i don't leave home without them. And since you have Celiac, you must be very careful about cross-contamination issues. At one restaurant I used my cards and got something safe (probably eggs) and was told by my server that it would take a little while as the cook had to clean the grill before fixing my meal. But darned if I didn't get glutened anyhow. The longer you are totally 100% gluten-free, the sooner you will get that bread "fix" out of your system. And who knows, you might turn out to be a terrific gluten-free baker! There are some great cookbooks out there for breads made with gluten-free flours. Celiac isn't a death sentence, nor do you have to cut restaurants out of your life. Read all the threads you can, you'll learn a lot.

Annette

  ms. melinda said:

I thought the biopsy is the most definitive test? I have not had a blood test. The doctor wants me to have more tests done. How likely is it the biopsy would be wrong? (I want it to be).

Believe me, if we could, we'd want all of our tests to be wrong about celiac. But it's not horrible and life threatening (if addressed properly) and you can live a very normal life with a wide variety of yummy foods. Have you done the diet at all? What kind of symptoms do you have? Why was the biopsy ordered in the first place? And usually the biopsy is the "gold standard" so I can't understand why the dr ordered more tests. Usually the biopsy is done last. Hmm. Personally, I'd do the diet challenge for 2 to 3 weeks, eat one day with gluten, then go right back and monitor your reactions and physical well being for the whole time. Cheaper than bloodwork. My 2 cents.

Annette