knomad

Kias4,

I've only got CeraVe lotion - I didn't know they made a heavier cream in a tub.  I'll go look for it.  Where do you find it - Walgreens, CVS, Target?

Thanks, Karen G!

My husband does not have to eat gluten free, but when he is at home he eats what I can eat.  He's so supportive!

We do eat out occasionally, (maybe once a week)  but I have been very, very careful and the two of us take a great deal of time explaing to the wait staff what I need.  We only go to a handful of restaurants that know me and seem to get it right.  I think I got glutened on Mother's Day.  I had ordered something off the gluten free menu and explained very carefully what I needed, but the waiter didn't seem to care.  When he brought the food, I asked again "is this gluten free" and his answer was "I put it on the ticket".  He also never brought my husband's entree.  But, we were with my husband's family and they don't take my celiac seriously and I got embarrassed and didn't want to make a fuss.  That was a mistake on my part and I will never do that again.

The doctor said my antigens were so high it could not be from a one time glutening (is that a word) and that I'm eating gluten every day - but I am not.

We do eat very simply - simple grilled meat, no seasoning, fresh veggies, and gluten free bread I make myself.  We go to the grocery store together and read every label every time.  I replaced all my utensils and our Teflon skillets and canisters when I first started this diet.

Our phamacist is in the process of checking all my medicines for gluten and I should know about that in the next day or two.

This has got me totally stumped, especially since he said I'm eating gluten every day.  I'm just looking for anything that might be contributing to this.  Or maybe it's just me, and a little gluten one time sends me sky high.  I am known for doing very strange things!

Thanks!

Help!

I have extremely dry, itchy skin - especially on my legs.  A dermatologist recommended Cetaphil to me 20 years ago and it has always worked well for me.

I have been gluten free for 4 years.  My last blood test were not good. I can't find anythink in the food I eat, so I have started looking at my cosmetics.  My toothpaste is gluten free as is my shampoo and I've started using a gluten free soap.  I've read that Galderma will not say if Cetaphil is gluten free.

My legs are dry, itchy, and flaky without the Cetaphil.  But, I can't find a lotion that is as thick and rich and moisturizing as the Cetaphil.  I've tried Cera Ve, Whole Food's Maximum Moisturing Lotion, and Skin by Ann Webb.  (I was told that the Skin by Ann Webb is gluten free, but I just noticed that my big tube does not say gluten free although a small tube that I have does.)  I also ordered lotion from Gluten Free Savonierre and am trying that now.

Does anyone know of a really good, rich moisturizer?  I've even thought about using the Cetaphil on just my legs, maybe even using gloves to put it on so I don't get it on my hands.

Thanks! 

Thank you, everyone, for your responses!

WinterSong - you made me realize something that I hadn't before.  My grandmother died of stomach cancer about 5 years before I was born.   I've wondered where the Celiac's came from, as I seem to be the only one in the family that has it.  I just didn't think about that connection.

kareng - yes, I think she doesn't accept that it's a real disease.  She doesn't understands it, so it just doesn't exsist. 

iloathegluten - I think that's what got to me - the attitude.  The superior "my grandson's nut allergy is worse than anything you deal with" and the complete lack of caring or concern.  (I have Celiac's, have to eat little or no sodium because of kidney damage, and have been a diabetic fro 23 years.  I almost died after heart surgery 8 years ago and have had many complications since).  You're right, we don't complain because it would be so gross, and, besides, I was brought up to just say "fine" in a cheerful voice when someone asked how I was feeling.   

Cyclinglady - I would love to visit the gluten free RV!!!

Psawyer - you're so right, she's not a friend.  A friend wouldn't belittle my disease.  So why I am letting someone who's not a friend, or kind, make me feel bad?  I'll keep reminding myself of that!

Again, thank you for your replies.  You've really encouraged me!

A friend has a granson that has a peanut allergy.

She has said things that insinuate that the peanut allergy is much worse than my Celiac.

The big one is "His allergy is life and death.  You would just get sick."

While she has a point, and she's right, it still hurts when she says it.

Have you ever been told that?  What did you say?

Thank you so much for your replies!

Pricklypear, the medicine is part of the puzzle.  I don't take as much when we are traveling, and I don't take it at regular times like I do at home.  I don't take the diuretics if we're flying - or driving a long way where restrooms might not be readily available.  I take it when we get where we're going, but sometimes I don't get all my doses in for the day.  That has really puzzled me.  When I'm at home, I take my medicine on a regular schedule.  It's almost as if the diuretics are hurting, not helping. 

And you may be exactly right that my body responds better to regular, larger meals.  A nutritionist affiliated with a doctor I saw told me that I don't eat enough.  It's just scary and exhausting sometimes trying to figure out what I can eat with all the restrictions.

And you're right about the ceramic floors!  I don't go barefoot, though.  I always have houseshoes on.

ValeriaZ, good point about the chlorine.  Would filtering my water be the best way to get rid of that?

This is my first post to this forum, but I have been reading it for quite a while.  I have a dilemna that I hope someone else has experienced and can help me with.

I have celiac disease, diabetes, and have an artificial heart valve.  After my heart surgery, there were complications and I was in the hospital for 6 weeks.  My kidneys and liver shut down, leaving me with some kidney damage.

I have been on diuretics since the heart surgery - I take a half dose of HZT, a small dose of spironolactone, and Torsemide.  I am allergic to sulpha drugs and am very resistant to Lasix and Torsemide.

I have this weird thing going on.  At home I will retain fluid and my legs, ankles, and feet will swell.  Nothing seems to help.  I am on a low sodium diet and cook at home (because of that and the celiac disease).  I am very, very, very careful with sodium, and, yet, still I swell.

However, when I travel with my husband, I lose weight.  Within 24 hours of leaving home, I usually start shedding fluid and will loose up to 10 pounds in just a few days.  We were gone two nights last weekend and I dropped 5 pounds.  This is with us eating out.  I have "the talk" with the waiter about the gluten free and the sodium, but I know I'm getting more sodium than I do at home.

I eat more when we are away - usually three times a day.  At home, I tend to not eat very much at all.  The doctors have said that it must be that I get more exercise when we are away, but that isn't always so.  My husband was in a conference last weekend, and very tired, so we stayed in the hotel except when we went to eat.  It was a very quiet weekend.

I've told my doctors this repeatedly, but they just tell me that this doesn't make any sense.  My kidney specialist listens and accepts what I say, but has no suggestions.

I'm at my wits end trying to figure out what is different about when we travel, and what I can do differently at home to help prevent the swelling.  I would think it might be the water, but this happens consistently no matter where we go.

Does anyone have any ideas?  Help!

Thanks!

Hey, guys, please! I'm new at all this and I am just asking for information. I have only been doing this for a couple of weeks.

Yes, I know that it is very important to stick to the diet.

No, I am not cheating on the diet. No, I do not plan to cheat on the diet.

No, I have not eaten dim sum since being told I need to be on the diet, nor do I plan to eat dim sum until I research it thoroughly.

I am very motivated to do this. I am hoping it will improve some other medical problems I have. I can tell already that it has helped with my blood sugars.

Perhaps I didn't express myself clearly. I'm not saying that I don't have symptoms, I am syaing that I did not have any outward, "traditional" symptoms of celiac disease. Eating wheat has never made me sick. I had a couple of episodes of anemia that resolved with a short course of iron supplements. Nothing unusual for a woman. I had reflux, but it had improved and I hadn't needed to take anything for it in a couple of years. Then I had a check up and the blood work showed that I was significally anemic, but not horribly so, and certainly not enough to warrant hospitalization. Out of an abundance of caution, my family doctor suggested a colonoscopy (besides, he said, I was 54, so it was time). Because I had reflux a few years ago, the GI doctor decided to also do an endoscopy to make sure I didn't have any problems there. The GI doc was shocked by the results. Even he seemed reluctant to put me on the diet. Maybe he felt sorry for me because I already am on a low fat, low salt, and no sugar (diabetic) diet!

I'm doing the best I can.

I found information on the internet that said there are several good gluten free choices at dim sum, but wasn't specific about what those choices were. I just wondered if anyone knew.

The restaurant that we go to for dim sum is very big and very busy. However, thank you, you did give me an idea. There is a lady who worked with my husband who introduced us to dim sum probably 25 years ago. She recently retired. I think I can get in touch with her. Since she speaks Chinese, maybe she can find out for me what I need to know or help me make a card (don't have an iPhone). If not, I just won't go to dim sum.

Thanks, too, for the idea of making some dim sum items at home. Maybe I can get my noodle and dumpling fix that way!

I am newly diagnosed and new to this site.

One of my favorite meals, although we only go every six weeks or so, is dim sum. I found several things on the internet that say there are good gluten free choices at dim sums, I just can't find specifics. Since I can't communicate well with the servers at the dim sum restaurant we go to (they don't understand my southern accent!)

I know to avoid soy sauce or any other sauce, and have been doing that for a few years because of the salt. And I know that I can't have the egg custard cups anymore (they have a pie crust type shell). The other things I enjoy that I think may be safe (because they are made with rice noodles) are:

shrimp dumplings

pork dumplings

shrimp noodles

sticky rice

golden (fried) dumplings

shrimp balls

sesame balls

I won't be able to tell if any of these effect me, as I have no symptoms of celiac. It was just by chance I was diagnosed. I was anemic and a colonoscopy was done to make sure I wasn't loosing blood somewhere. The GI doctor decided to do an endoscopy also since I had reflux issues a few years ago. My small intestine showed the scalloping of celiac. The doc took a biopsy and also did blood work, and they all came back positive for celiac. None of my doctors believed it, as I have no symptoms and I am overweight. They all said it was not necessary for me to do the diet since I had no symptoms. However, a new doctor has advised that I should be on the diet, as I have other medical issues and he thinks the celiac may be the underlying problem. I have been reading this site and this forum, and I have learned so much. Thank you to all of you!

I am newly diagnosed with celiac and new to this forum. I have been learning a lot from reading all the posts. Thank you all!

For Nor-Tex: I just visited a gluten free bakery here in Dallas today. It just opened last Thursday. It's a mother and daughter who both have celiac. I came home with a whole bag of goodies - white bread, wheat bread, pumpkin bread, and brownies. The samples I tasted at the store were delicious. The name of the bakery is Wholesome Foods Bakery and it is at the corner of Buckner and Northcliff near White Rock Lake. I think they have a website. Hope this helps!