casnco

Dammit I doggone hate this disorder... How long does it usually take for the diet to kick in...and to see a major improvement with every symptom?...and how do you control the gas? *farts painfully* ... and by me being 19 does that rank me as an adult or kid in speaking of the problem?

Mr. Mackey:

The gas lasts a while for me. Weeks, sometimes longer. Sometimes I do a liquid diet for several days. That helps a little. The longer I am able to tolerate a liquid diet the better I feel but it still does not eliminate the gas.

Make sure EVERYTHING is gluten-free. Even shampoo and hair products. I make my husband feed the dog to avoid the gluten there. I have done that for 2 years. Recently dog sat for a neighbor, and even with really great hand washing, I got glutened. I guess I am more sensitive than I even want to admit!

Good luck. The whole thing gets better with time. And by the way I would see any doctor that understood Celiac Disease, adult or childrens.

Debbie

Please Please help me find a doctor who will help me. My family doctor doesn't have a clue, and the most recent GI I went to was an absolute jerk.

Thanks so much.

Kara

Kara:

I went to Michael Stiff at St. Ann's. He was great! My tests came back negative but I had been gluten-free for more than 3 months when I was finally able to get in. I wasn't about to eat gluten for the testing I just wanted to make sure I was alright on the inside. I also have Dermititis Herpiformosa and was diagnosed positive celiac with blood work after a prolonged outbreak.

Good Luck.

Debbie

Thanks Wendy.

I do intend to try gluten free regardless of results. It is definitely worth a try. I don't want to go on living like this. It is so uncomfortable.

Just confirmed with the Dr. for tomorrow. He is a really nice man. When I first saw him last week the first thing he did is introduce himself to me and then shake my hand. I feel like we could be partners in this... He gave me his cell phone no. and told me I could contact him any time if I had questions or problems..

Also he was very thorough in his questioning and he suggested celiac straight on up, not just saying IBS and must be due to stress (which was always my previous response from any dr I saw). Also explaining everything and making sure I knew what the medical terms we were using meant.

Trusting the Dr. is going to be a big part of this (regardless of what this is). He also told me he would need to take quite a number of biopsy (and that was before I saw that requirement on this board) - so I guess he is really knowledgeable and up-to-date. And he reassured me he is very experienced with endoscopy / colonoscopy and that he is comfortable to do the procedure without anaesthesia... In fact that it is better in terms of recovery..

BUT I am still really really really nervous. Having something stuck up one's A** and wiggling around in one's belly (a belly that is never very comfortable at the best of times) when one is fully aware of it is NOT going to be a nice experience. The endoscopy I am cool with. Been there, done that. Though the biospsies did hurt. But colonoscopy! Hmmmmm.....

Have been eating lots of wheat stuff all week. Have LBM and reflux all week (though not too bad!), though have been super itchy.. Maybe really don't have this... well.. will see.. diet challenge next. That will be much more of a challenge than getting through the tests!

At least living in Asia (Philippines) avoiding gluten may be a little easier (diets here revolve around rice, not wheat).

Will update tomorrow when am through with all the testing..

S

Good Luck with your tests.

Hi,

I just found your forum and have some questions.

I had assumed for the past 5 years that I have IBS as a result of stress. Previous diagnosed with erosive gastritis and barrets, which I was doing nothing about. Anyway, I finally saw a gastro dr. last Saturday and he mentioned possibility of celiac. I have hypothyroid now.

Aside from tummy troubles: classic ibs type symptoms: diarrhoea with intermittent constipation and short periods of feeling ok, bloating, gas, nausea, reflux I have some other things going on. Could these possibly be due to celiac. Includes itching. Particularly terribly itchy feet, but now also itching particularly low back, and sometimes on my body (but no obvious rash). All sorts of miscellaneous aches and pains that don't have clinical signs (like low back - sacroiliac area pain - xray was no problem), aching hands and wrists (periodically), aching feet, muscle cramps in the feet.. Yeah, and I have issues with food - hard not to when eating is not comfortable.

I am really hoping that this is going to be positive - because I would be very happy to find out that this is not just me being a hypochondriac and having all these psychosomatic symptoms. At least then I would know what I am dealing with! And can do something concrete.

My friends now think I am nuts and are getting sick of me being unwell all the time. (I don't blame them! I don't really like living with myself at the moment!)

They are going to do endoscopy and colonscopy next Sat and will do biopsy to confirm diagnosis or not.

Oh by the way, has anyone had colonoscopy without anaesthesia (did endoscopy a few years ago without and it wasn't pleasant, but it was bearable). I don't want anaesthesia becuase 1. it is much more expensive, and 2. I don't have any companion and have to get there and back under my own steam. Any advice.

Sally

First of all you are REALLY brave!!!! I would hire a someone to take me home afterwards rather than not have anaesthesia!!!!! You are a strong person.

I get the itching when I ingest gluten. Some people take Dapsone to relieve the symptoms. I just use diet and lots of anti-itch cream.

The other symptoms seem like they could be related but I have never experienced them. Good Luck!

Has anyone ever had one type of reaction to one type of gluten and another reaction to another type? Does that make any sense at all?

I think I was glutened last night and had severe stomach cramps. This morning D.

I purposely glutened a while back. My reaction was immediate DH. D the following day and for many days there after, along with foggy headedness.

Why one type of reaction one time and a different one the next?

Just FYI I am staying gluten free since the bad experience when I did it on purpose.

Marlene:

I had been gluten free for about 1.5 yrs when again I had horrible epigastric pain. It radiated to my back. I was doubled over in pain. I too felt that if I could just have a BM I would be alright. Unlike you I was never able to accomplish this. I ended up in the emergency room. I told them these pains were related to celiac. They were angry with me because I would not concider gall bladder issues. They gave me demerol and sent me home with my husband.

6 months later, I had a great meal of chirizzo stuffed jalipino's and some wonderful cheese infused with lemon zest. The next morning my breakfast consisted of a starbucks coffee drink. And about an hour after ingesting that I had another attack. Of course this time I was at work. EEEsh! So down to the ER I went. They insisted on an ultrasound. Yep, there were gall stones and the gall bladder was enlarged. They wanted to take it out immediatly. I wanted to wait. Fortunately I didn't wait until it was ruptured. So, now I have no gall bladder. (It did need to come out) The surgon suggested that now I would probably not need to worry about gluten. Of course he said that in front of my husband. 4 months after having the gall bladder out I tried a Beer. Well, I had all of the reactions I did before, except the stomach cramping. So, I felt I was still had my celiac (which was blood work positive, biopsey negative, symptoms positive)

I shared this long story because last week I started feeling the stomach issues again, they were mild, but definately precursers to the big cramps. It has been 6weeks since my purposeful glutening. Then yesterday it hit. Big time cramps in the afternoon. They passed quickly. I was stupid and didn't treat my stomach tenderly and went ahead and ate dinner. Fish, rice, green beans, glass of white wine. 20 min. after the meal, Big time cramps! Vomiting, no D. This attack lasted quite a while. The only thing I can think caused them was the "FiberOne" I recently introduced to my diet. There must be a hidden gluten or I just don't know what the ingredients really are.

So, having the gall bladder out has not stopped the cramps. And indead taking out a gall bladder does not take away Celiac disease. I wish my surgeon had been right, but not everyone really understands this disease.

Mary Kay has cosmetics that are gluten-free, but they also have some that are not. We can use their lipstick, eyeshadow, blush, foundation, and waterproof mascara, but not their colored nail polish. I don't remember about their cleansers, but I think about half of them are safe. You would have to get your consultant to look up the ingredients for you. And a good consultant will go all out to help you.

Two years ago I purchased Mary Kay waterproof mascara and there was hydrolized wheat protien in it. Maybe they changed there formula. Just be careful.

Now there is a real friend. Thanks for sharing a positive.

Dear Nantzie,

My problem is my parents are not gluten free and I am. They are not careful. They treat me like I am paranoid. I told him, I cannot spend all day cleaning everything! I have been doing that for three months now, and it is exhausting! Plus, he complains that we do not have room for two of everything! The can opener is something that is very difficult to clean properly, and takes forever to do so. It makes me so angry how they act about this. I need my own pans, rolling pin, etc. I am tired of worrying constantly! Any suggestions?

Sincerely,

NoGluGirl

NoGluGirl

Sorry your parents are not supportive! I might try keeping some basic things in my room in a container. Take them to the kitchen to prepare your food wash them and take them back. That sounds labor intensive also, but maybe not as bad as cleaning a can opener every time you want to use it. Good Luck!

Hi, I don't know if this is the right place for this question but it seems like a good place to start.

I was given a wonderful Rolling Pin. It is wooden. It has ball barings in the handles. My question is... It was my Grandmothers. And of course she used it for making products containing gluten. Is there anyway to assure I have cleaned it enough to be rid of the risk of cross contamination?

That's how I feel but its been 4 days since the Glutening. Is that still correct?

I am 4 weeks from the glutening and my belly still is tender. The D just went away for the first time in four weeks and now I am constipated. Go figure.

I have been using Nutrogena for about a year and I just don't like it! I look fine for a couple of hours then it just looks greasy and gross.

What liquid foundation that is in a drug store (aka cheap) do you use? I really could use some suggestions, I look like crap

Hez

I am trying out the Neutrogena Health Skiny Enhancer. I know that is what you said you use. But actually I like it as well as the Prescriptives I used to use. I don't know if this was the particular formula you used or not. If not give it a try. If it is what you have been using and you cant find anything you like better you might look at your moisturizer. I did find the Nutrogena on the "greasy" side. So I stopped moisturizing before I put it on and It provides enough moisturizer. When I take it off at night I use moisturizer. I know all of the make up counter girls and Mary Kay ladies would tell me this is a recipie for wrinkles but I just am not buying it anymore. Good luck.

Your post has made me so happy!!! My husband and I were talking about taking a cruise but I figured I'd be death walking by the time I returned. I cruised with Royal Carribean once before and swore I'd never go on another line...your experience has cinched it for me!!! Glad you had fun!

On the Royal Carabbean site they have a link to something like "glutenfree@rccl.com" It is an automated responce but it worked! Good luck

Has anyone experienced dizziness from glutening? I was glutened 4 weeks ago and I am still having symptoms. I have fogginess but I am also quite dizzy.

Has anyone heard of Robert's Formula? I was reading some info on it last night through a google search... that it is known to help heal intestinal damage caused by Celiac, Chrons, etc... Open Original Shared Link

I was wondering where I would purchase such a supplement?

I have never heard of this. If you find it and try let us know how it works

Okay remember my astonishment at eating the donuts last Monday and having nothing happen? Well...I have a further confession. I cheated again, on Tuesday....wanted to test it to the extreme and was in a devil-may-care mood. I wastoo embarassed to tell you all that I cheated TWICE. So on Tues. ate four pieces of banana bread from Trader Joe's. So...that's three donuts on Monday, four pieces of bread on Tuesday. No D.

welllllll.....by Thursday I had MAJOR flatulence, cramping, bloating....and constipation. And Friday....the delayed onslaught. Oh lord. This is TMI but it was the most noxious and toxic D....very painful and awful, for a couple of days. By Saturday night I was doubled over in fetal position, intense pain, bloating and cramping. Realized that for the three days prior, I had the old kicked-in-the-gut feeling, and my poor villi were wounded. Ouch.

I'm all better today, and I will never cheat again. Never. Ironically, the day after the cheating, I got a ltr. from GI's office for followup bloodwork. I am going to delay this - tell them what I did and postpone the test - not sure by how long. How long do you think I should wait to have my numbers return to norrmal?

thanks......

When will we believe we are not able to eat gluten. I too purposly glutened myself. I tried one half of an Amstel Light. I didn't finish it because I was not enjoying it and I was concerned about the consequenses. Well, an hour later and my DH cropped up on my arms. Then the gas and D cramps soon followed. It has been 4 weeks and the gas, cramps and D persist. The rash has gone. The brain fog keeps coming and going. I will never do this again. I truly think the worst thing is the Brain fog. Anyone else out there have symptoms this long?

I just returned from a Royal Caribbean Cruise to the Greek Isles. It started in Venice, Italy. In Italy I used my laminated dinning cards. There were some nice Italians who were willing to help and some rude ones who physically escorted me to the door! Guess they didn't want to deal with someone who could not eat pasta.

Once on the cruise my life was GREAT!!! They bent over backwards to accomodate me! If you choose to do any vacationing outside of your homeland, I HIGHLY reccomend Royal Caribbean. Every night they would sit down with me and show me the menue all of the guests would receive. They told me to pick ANYTHING on the menu and they would make it gluten free. (except the pasta dishes) They even made sure every night I had a gluten free dessert! They made me Gluten free bread everyday. I usually skip the rubbery bread at home, but I ate it on the cruise. If they went to the trouble to make it I went to the trouble to enjoy every bite.

When I was in port, Rhodes to be exact, everyone wanted authentic greek food. I tried my dinning cards. I still ended up with a Greek Salad. I was dissappointed. I thought I could have had something else but the waitress said no. I didn't feel as though she was really trying to help. But I have learned when in doubt. Stick with a simple salad.

All in all, cruising may be the best way to travel gluten free.

This is the funniest thread ever!!!

I smell all kinds of gluten filled things all the time...friends and family know they have to put their plate in my face before eating so I can get a sniff!

That is so funny! I do the same thing. I was just in Venice, Italy and I made my travel companion eat pizza so I could smell it. Sounds kind of kinky doesn't it?

Does the package list ingredients in the glue?

Yes it does and it does not list any ingredients I am aware of to be wheat/barley/oats or rye.

Has anyone encountered a DH episode after applying either acrylic or gel nails?

my bread machine was used for regular gluten containing bread before... I just cleaned it VERY thoroughly... the pan is completely immersible in water so I soaked it thoroughly and then every surface on the inside and outside of the bread machine I went over it with q-tips and a toothbrush and throroughly scrubbed it. I've been using it for gluten-free breads for 3 1/2 years with no problems and I'm very sensitive.

In fact, I just put a mix in just a few minutes ago. I use the Pamela's wheat free bread mix. It used to say "Amazing" on the bag but for some reason they changed that, it's still amazing. I substitute a 1/2 cup of the water for 1/2 cup milk and it makes it richer and more moist. The Pamela's is really easy in my bread machine, it has a setting for rapid cycle which means it only kneads the bread once which for gluten-free breads you don't need extra kneading... I also make sure to scrape the sides of the pan with a nylon spatula when it's first mixing and if it looks dry I add more water until it's not dry looking...

Nini:Thanks for your responce. I wasn't aware that the bread machine broke down so easily.

I am glad you brought up this topic. I too had a problem with being full. My stomach would hurt, and rather than obstain from eating, I would eat something and the pain would go away. Then the food would begin to "digest" and the pain would come back. Again I would eat more and the pain would subside. This has gone on for most of my life. I have developed the worst eating habits known to man. Now that I am gluten free (for 3 yrs) I do not have the stomach upset. Now I am working on changing my eating habits. Now that is a chore. I have always been about 50 lbs overweight and hoped when diagnosed with Celiac I would lose some weight. I haven't, darn it. And now I realize it is because I have bad eating habits due to the constant cycle of stomach pain and using food to comfort it. What a vicious cycle. When there was no pain in my stomach I was hungry because of all the food I was eating most of it was gluten containing carbs so there was no nutrition for my body. Therefore I was hungry for nutrition. Wish they taught more about nutrition in high school.

I don't think I would use a bread maker that has previously been used for baking regular gluten containing bread. There is a risk of CC. I don't own one, but can you really clean it sufficiently to eliminate the risk of CC. I would be interested to hear others ideas concerning this. I am really a freak about CC. I hate to get glutened without knowing. I would rather do something purposeful if I have to suffer.

Thanks to everyone for their suggestions. I will have to try the M&M's in the PB cookies. Great idea! I am also going to try the sugar cookies. Man do I have a lot of flours, looks like I need to purchase some starches now. That is if I want to bake for Christmas.

Thanks again.

We use Kraft Peanut Butter at home, and there is usually a recipe on the side of the jar. One of their standard peanut butter cookie recipes has no flour...

From Kraft Canada:

Super Easy Peanut Butter Cookies

1) PREHEAT oven to 325°F.

2) MIX 1 cup Kraft Smooth Peanut Butter, 1/2 cup sugar and an egg with a large spoon in a medium bowl.

3) ROLL mixture into balls and place on a cookie sheet. Flatten with fork or squish with your fingers.

4) BAKE at 325°F for 20 min. Remove pan from the oven. Let cookies cool in pan for 5 min. to 'set', then transfer to a plate with spatula.

Michelle

YUMMY!!!! I made these and they were great!!!! I can't believe how easy they were to make. I thought they would come out like crisp disks of peanut butter but they were a wonderful consistancy. I highly recommend these. If anyone has a recipie for christmas cookies I sure would appriciate if you could post them. Thanks. Casnco