nettiebeads

Is the Dr. that runs this lab kosher?  I see that his name is Kenneth Fine but I also see that he goes by Kenny "Jude" and is a singer selling celiac disease's.

Is Enterolab testing valid or is it questionable? Is this "expert" valid or is he questioned in the medical community?

Seems incredibly expensive to buy your own tests instead of seeing the doctor about something like Celiac...I'm confused.

Thanks for your responses in advance...

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I was browsing the web and came across Dr. Fine's bio and resume. I'm impressed, especially since he received his Dr degree from University of Missouri at Kansas City, the same one my retired dr came from. And it was my gp that dx'd celiac disease. They must be teaching something right at that school. Dr. Fine's work is impressive, and you can see the gradual progression to specializing in celiac disease. He has several monographs, participated in many other medical studies and clinical trials, is board certified in Missouri and Texas, and obviously knows what he's doing. And he's bucking the trend, letting people get their answers w/o going through dr's and the medical communities/insurance labyrinth of doors. and the bio mentions his involvement in bands. Sounds like an overachiever to me.

I have a picture of myself that I want to put up, but I don't know how.  It says that the board administrator will not allow it.... please help!

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Hey PreOptMegs! Haven't heard from you, obviously you've been busy with school. I was thinking of you Sat - we were at the Touhill for a concert, after eating at PF Changs in Chesterfield. How are you doing?

ok, so my gastro wants to follow up my diagnosis (which happened in August) with a capsule endoscopy. in his words, it's to establish a baseline of images of what my small intestine looks like in order to be able to track any changes that might occur in the future. (i.e. it is not for the purpose of diagnosis -- been there, done that.)

the problem comes in in that my insurance company will not pay for it. it will cost $900. i do not have $900. do y'all think this is worth it? i want to do all i can to be healthy and take all the right steps here, but i have to be sure about this before i sign away this much money. i'm just a broke grad student, so this is a big decision. any thoughts would be greatly appreciated!!

Happy Halloween! 

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Had another thought re: test. (sorry, couldn't keep focused last night - all these little creepy things were at my door for candy) - He wants the test as a baseline, right? Well, that means if he doesn't order the test again in the future, then what's the point of getting the test now? Meaning, this would be the FIRST $900 you'd have to plunk down out of your own pocket. Just a thought.

I am a new Celiac and am getting ready to return to work after being on medical leave. As a newbie, I was wondering what ya'll like to take to eat for lunch. I used to eat out everyday. I am looking for gluten-free lunch ideas.

Thanks and happy lunching!

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Do you have a microwave at work? Campbells has a few soups that are safe. Dinty Moore beef stew is okay. I had leftover pizza (gluten-free of course)- still a kid at heart, I can eat that cold. Delimex has a couple of taquito varieties that are safe. Good ole salad, but I can only do that a couple of times a week. Otherwise my taste buds rebel! Have you gotten the triumph dining cards? Maybe then you can eat out again.

ok, so my gastro wants to follow up my diagnosis (which happened in August) with a capsule endoscopy. in his words, it's to establish a baseline of images of what my small intestine looks like in order to be able to track any changes that might occur in the future. (i.e. it is not for the purpose of diagnosis -- been there, done that.)

the problem comes in in that my insurance company will not pay for it. it will cost $900. i do not have $900. do y'all think this is worth it? i want to do all i can to be healthy and take all the right steps here, but i have to be sure about this before i sign away this much money. i'm just a broke grad student, so this is a big decision. any thoughts would be greatly appreciated!!

Happy Halloween! 

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If I were in your situation, I'd skip it. There are other ways of monitoring your health - if you're feeling healthy, you probably are. I was dx'd old school - diet challenge. None of my drs (the original one who dx'd me) or subsequent dr's have ever mentioned looking into things, as it were. I think it's easier for the dr's to look at images, but it's not his $900 bucks paying for it. Your health can be monitored by what your body is telling you - if you're feeling better on the gluten-free diet, then you're getting healthier. Energy levels, appetite, skin, regularity, all can point to health. He could order blood work to see if your hormones, iron, and nutrition is being absorbed properly. That would give him a baseline and be much much cheaper.

OK I have various symptoms and have been labeled IBS!  I have extreme fatigue, I am constantly hungry, I have recently lost 5 pounds although eating more or normal.  Some days my stomach causes me horrible doubled over pain.  Others it rumbles and rolls and causes mild pain.  Before I went on Zelnorm, I would have either be constipated or have diahrea.  Now that I am on the meds, I typically have a BM daily. 

Now for the gross part, I have had poop that strings out of my bottom and dangles to the water.  It is like stretchy and disgusting!  It doesn't happen always, but my stools vary in color, consistency and texture.  My husband freaked when I described the stringyness and was like, THAT is not normal! 

When I eat pancakes, I am in horrible pain.  I seem to be able to eat high fiber bread and my stomach just rumbles. 

If I have celiac disease wouldn't I be in MAJOR pain each and everytime I eat gluten?  Or does it vary!  Like now, I had bread with breakfast and my stomach is rolling away! 

I am to see a GI on November 28th, I have no faith in Doctors anymore.  I have more trouble with getting them to care enough to diagnose.  I want to go in there with specific requests to get to the bottom of this.  From what I am reading, I possibly may not have celiac disease but more of a gluten intolerance or wheat intolerance.  How does a dr test to figure out which I may have? 

Any help is greatly appreciated!

Monica

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The fatigue and weight loss to me are very good signs of celiac disease. Also if your poop is really foul smelling it's gotta be celiac disease. The poop problems are from the malabsorption caused by celiac disease. I don't think IBS has the malabsorption issues that celiac disease does. Ask for the celiac disease blood panel from your dr. If he won't order it, ask him why. Or if you want, go gluten-free anyway for two weeks and see if the symptoms start to abate. Then if you eat gluten again, and start in with the problems, there you go - positive diet challenge and still a legitimate test for celiac disease. That's how my dr dx'd me 9 years ago. Also, you may be having problems with milk if you do have celiac disease - the damage done to the villi is also where lactase is formed to digest milk products. After you heal you should be able to tolerate milk and milk products better, if you are having trouble with them now

Today I got a phone call and I won a trip for two to Jamaica -- everything paid, worth $3000.  This was a legitimate contest, not a scam and I entered before I thought I had any problems with wheat.  Of course, I did not expect to win it!  I thought about it for a while, talked to my husband and then I called the lady back and said no thank you.  Open Original Shared Link  I put this in the coping with forum, because it was a new experience for me to deal with (VERY NEW, LOL).

She had NO idea of if they were able to deal with food allergies when I asked her before making my choice, there were several resorts to choose from.  She wanted to know if I would "get better" later in the year and wanted a different date to travel.  She was very nice, but I could tell she did not understand at all.  She asked me to send an email to formally give up the trip and I did for their records, and I did.  They will select a new first prize winner now.

I don't know if I could handle being out of the country and not knowing if there was any safe food to eat.  I am sure the food at the Goldeneye Resort would be wonderful, just not safe for people with food issues.  I am just at the start of all of this and I don't have experience like many of you do.  Maybe after I learn all about this I will feel like travel.  I am just not there right now.

I am wondering now, would you take the trip or say no?

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I've had celiac disease for 9 years and still don't like to travel like I used to. I even talked my boss out of sending me to San Diego for a seminar. I don't like letting celiac disease control me, but I'm so tired of cross contamination issues that I don't enjoy myself like I used to. Maybe later on as you get used to the diet and learn what to look for you can get a trip someplace. My problem is that would items in Jamacia have the labeling laws we do here in the U.S.? BTW, for future dining reference, the Triumph dining cards are a godsend - I highly recommend them.

I just made a loaf of cornbread from the Ener-G gluten free cornbread mix. It is soo good. I modified the recipe (added extra sugar and more milk) but it tastes just like Grandma's homemade cornbread used to taste and is really easy and quick. 

I think I am officially cornbread addicted now.

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I've always used the Fanny Farmer but substituted gluten-free flours - sometimes my nongf dh can't tell the difference. Now for a pot of chili - them's good eats!

hello

I started the gluten-free diet on friday

i was doing really well except my mom bought some bread yesterday and asked me to try it she said it was really expensive and she wanted to see if i could handle it

thanks for any advice

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It sounds like your mother may have "wheat free" confused with "gluten free". Rye is a bad thing for us with celiac disease. I'm sure she meant well. Don't worry, we all go through mistakes on this diet, but this forum should help shorten your learning curve. Also, I've read (and it helps me) to try to get more than average protein. The normal diet is about 50 grams/day, those with celiac disease should up that some - but you need to find out what is your optimum for your body.

blood tests came back slightly high, they said it was borderline, but they would consider me not. this was with a dr i wasnt too keen on (he said because everything is normal, its all in my head).  i see my GI dr tomorrow so ill get some more answers. but i know how my body feels with gluten (like the gluten i ate yday from bbq sauce...ugh).

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I would imagine high IS celiac disease. Borderline or not. I really really dislike it when dr's are so dismissive of anything that they can't pinpoint or fix in 11 minutes At least here people believe you and have experienced some of the same problems.

i know this is a weird question... just trying to find a beef broth that i can make french onion soup with and i have one that seemed ok except not sure of the autolyzed yeast extract

thanks!!

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yeast is fine, so long as it isn't brewer's yeast, which is normally a by-product of beer making.

Hi there,

I feel so terrible. I feel like I had a load of gluten or something. The whole disaster started yesterday evening at about 9:00. I haven't had a Snickers for a couple of weeks. Yesterday evening I thought, "OK... Your weight is fine so you might be able to eat some junkfood. Especially since you haven't had it for a while." I went to our junk food drawer and there were still two Snicker bars in. With joy I grabbed them, proud of myself, cause I didn't eat junk food in a while. Only fruits, veggies, fish, rice and chicken...

So at about 9:00 I pop these two Snickers in and kept on rummaging and cleaning up my filing cabinet. I was sitting during that time. Then I got up to go to the restroom and by the time I came to the door I thought "this is weired, I haven't had brain fog in a while". And when I finally got up the stairs I bumped into the handrail three times, cause I was dizzy. Then this morning I had incredible bloating and during the tournament today I had bloating, diarrhea and had to go to the restroom like every 10 - 20 minutes... What the h... is going on???

I tried to figure out what that might be. It can't be the lactose or chocolate. I have one cocoa every morning and about a week ago I had a plain milk chocolate without any problems whatsoever. Then it dawned on me. Could it be the nuts in the Snickers??? Because once Kathy, one of my celiac-students, made some brownies with nuts for me. And since she's not that careful with gluten and I got problems after eating her brownies I first thought, some gluten might have slipped into her recipe (which is pretty unlikely actually, if she only used the glutenfree brownie mix). But now I start to believe, it's the nuts maybe. Do Snickers have eggs in them, too? What do you guys think???

Should I wait, until I'm fine again and then eat a couple of plain peanuts scoops?

A clueless Stef

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I'd blame the nuts. I also have diverticulosis and nuts are a no-no for me. But I don't have the symptoms that you did. I'd try a few peanuts next week when your body has recovered, and also when you have some "down" time in case..

Can anyone tell me if very narrow and soft stools are commonly a symptom of celiac?

I know narrow stools can be a symptom of colon cancer but can also be a symptom of other diseases.

Thanks.

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I have diverticulosis and when I eat something I shouldn't (nuts, seseme seeds, any small seedy things) my stools are thin and soft.

My son just went thru an an allergy panel that found out he had a wheat allergy. (as well as tons of other things) He has never had a noticable problem until recently. The only problem recently is that he was rushed to the doctor with what was diagnosed as panic attacks. (a couple days ago) This is when she did the allergy panel. She gave him meds for panic attacks, gave him Singulair for his allergies and sent him on his way. She never mentioned a thing about celiac or about having to change his diet. I come home, research wheat allergies and I find this... I have no idea if this means he is now considered a celiac patient or not. I am very confused and upset. I have also read that some people with food allergies can have what seems to be panic attacks. I am also questioning if the panic attacks are actually an allergic reaction or not.  This has been a hard and very confusing week. I have another child now being tested for diabets this week. If one child has a wheat allergy, do I need to test my other children? As you can see, I am full of questions...

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I have multiple food allergies and never had a panic attack. But since I've developed celiac disease, give me gluten and I'm "weirded" out for quite awhile - almost panic attack like. Anyhow, diabetes and celiac disease go together quite often. I'd recommend both children be tested for celiac disease - at least the blood panel, biopsies can come back false negatives very easily, especially for children. Hope things settle down for you and life can become less hectic and more normal. Take care of yourself too, mom - You're important too!

I am having a terrible time with my celiac disorder.  I am trying to eat all the right food the doctors say that I should be eating but the problem continues. Hourly I have uncontrollable gas which is most embrassing for others to hear while you are at work.  I also have ever 2 or 3 days frequent bowel loose problems even when I am walking down the street, which can cause my pants and underwear to be a mess.  I take some over the counter stuff for it, to relive the problem temporay but I just can't do it every day.  What am I going to do..  I am also concerned that this might lead (when I get older) to more medical problems than I am having now.   

I am writing this e-mail because I want to hear from others who have the same problem and professionals who have study the situation.  Is this any doctor out there that might give me some advise.  Anyone having any quick solution idea's would be great too.   

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Well, I'm not a dr, but I've had celiac disease for 9 years. You really didn't give much info - How long sick before dx, extent of damage, how long gluten-free? The results of going gluten-free vary w/everyone. Depends on the variables I just mentioned. And also, are you truly gluten-free? No hidden sources that you thought were okay, but not? Still w/ milk (celiac disease causes damage to the villi and makes the villi unable to produce lactase to digest milk products) - Have you checked any supplements you take? cosmetics, hair products, meds? Is your kitchen gluten-free? The healing process takes time, remember you didn't get damaged all in one night, so the reversing of the damage doesn't happen in one night. Hang in there!

Open Original Shared Link

I found this on-line and I thought this was the most comprehensive explanation by a doctor about what celiac is, how to test for it, how to treat it and how to check up on it. I thought new people might really like this or people who aren't sure if their problem is actually celiac... 

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Thanks, I'm thinking of printing that off to hand to my brother next time he tells me Reliv will cure me or able me to handle gluten again.

I got to eat at PF Changs last night and it was wonderful!!!! Serendipity raised her beautiful head and I am so thankful. Whenever dh and I go to St. Louis I drive since I know my way around pretty well (he's been in KC for the past 13 yrs, even though we went to hs together in Rolla) ANYHOW - he had (until last night) a rather annoying habit of reading all the signs outloud when I was driving. Then I heard him read out PE Changs? I looked quickly and it was a PF Changs high on the hill above the turn I was making!!! I was so excited!!! We hadn't planned where to eat dinner last night, he was wanting buffet, but I convinced him to try it for me. Besides, he eats buffet two times or more during the week w/o me and I'm fine with that. The staff were so kind, and it WASN'T a big deal. Just a different menu selection. Just ask for the gluten-free menu at the hostess's stop, and you're set!!! And I know my dh was happy for me - to be able to eat GOOD food, with gluten-free soy sauce was such a treat for me. (and he enjoyed his nongf entree and it wasn't out of line in price).

I read somewhere that there were like three main fast food restaurants that DO NOT use separate fryers for fries and other foods and Wendy's was one of them.  So I stopped eating Wendy's which made me very sad.

I have started to realize after so long that food isn't as important as it used to be in my life.  Being healthy is so much better than food.

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That is the right attitude to succeed with this diet.

The fatigue is always the last to go when I've been glutened. The length of time to feel any effects from going gluten-free depends on severity of damage, just how gluten-free you really are and your own body's natural healing rate. My dr. dx'd me years ago just by the diet alone. Much less expensive and invasive as other tests, and just as valid.

National geograpic is doing a genographic project to map the migration of different populations across our globe. Is anyone taking part in this?

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Never heard of it. Sounds interesting. How would one participate?

biopsys of stomach and intestines came back negative for celiac (and several other things!). i cant tell you how happy i am (okay im sure you understand) but i still am showing a glucose intolerance, so i hope noone minds if i stick around.

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Please stick around!!! You'll still be following the gluten-free diet, I assume, and the gluten-free lifestyle, and the coping of the two. I'm sure you'll have questions and insights to share. But I am happy for you in that there is no damage to your innards like what celiac disease does.

I'm also happy to read that I am not alone! My husband is wonderful in so many ways but dealing with my obsessiveness over gluten is not one! That is why I am here every day. I need to know that there are people in this world who will listen and give advice when my family has heard enough.

I am extremely obsessed too! I have made a notebook with sections so I can print recipes, gluten-free products, letters from companies, hints from the people here, restaurant menus and lists of places that are gluten-free friendly, etc. My son laughed at me because I put a label on the notebook saying "If I am lost, please return me to my owner" and I wrote my name and address and phone number. This book has so much information in it!

Thank you all for being part of my support system!

Jo Ann

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Great idea!!!! I'll have to do that - electronic AND paper! Thanks!

I use cheap Clairol Condition hairspray (Walgreen's). When I called the number on the can Clairol explained that they sold that division to some other company (sorry forgot the name) so I called them and they took a day to get back to me. They explained that the chemist confirmed there is no gluten in the ingredients of my spray but in fairness, since I'm not yet on the diet, I have no idea if it's okay or not. Just getting all my ducks in a row so I can start the diet right after the biopsy. Next weekend is my big shopping spree for gluten-free non-food items. I feel like if I start using them now, then that's one less thing to worry about in a month when I start the diet.

Wow!

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Hey stef, where have you been? I'd love to see you at any of your competitions. I had a red belt in Tae Kwon Do for years, never could break my boards for my black belt. I kinda miss it - it was great excersize and discipline.

I didn't know this. For the last couple of days I've been super-careful not to put my fiingers in my mouth and keep washing my hands, and I'm feeling substantially better. Sounds crazy, but I think I might have found my hidden gluten.

Matilda

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There are times I think I should be wearing latex gloves at work - just to remind myself of all the hidden thingys out there. I was not aware of carbonless carbon paper. And I deal with triplicate Purchase orders every day.