Celiac Sprue's topics - tribe.net

Tiredness

2008-07-31T18:18:43Z

Hello everyone. :) I'm new to this tribe but not to the disease. Does anyone else feel too tired to get up in the morning? What do you do about it? I'm so careful about gluten, I don't think there is any in my diet. (I even check my toothpaste). I've had a really hard time trying to get my strength back and put on some muscle mass. It's been 3 years since I stopped eating gluten. Has anyone else here suffered a lot of complications from Celiac? If not then you're really lucky... it can be pretty bad if there's a lot of damage.

posted in Celiac Sprue - 2 replies

Gluten...it's not just for breakfast anymore

2008-04-22T02:42:22Z

Turns out that glutens are found in many places, including non-food items.

Sadly, manufacturers of non-food items aren't under the same FDA guidelines as food manufacturers so these items are often not even considered by those on a GF diet.

Here's a few to look out for:
grain alcohols
denatured alcohols
ethyl alcohol/ethoxylate
wheat germamidopropyl betaine
glycol stearate
phenoxyethanol

These are most often found in hair color products, certain shampoos and conditioners, self-tanning lotions and adhesives (like stamps but also some bandages)

So, if your GF diet just doesn't seem to be working please consider that there may be other non-food sources. If in doubt, you can call 1-800-555-1212 for a list of company #'s for product information.

-K

posted in Celiac Sprue - 0 replies

Frustration with being diagnosed!

2008-04-22T02:31:22Z

I'm really frustrated right now. I feel absolutely horrible. These are my symptoms: canker sores, numbness in fingers and toes, bloating, gas, constipation, diarrea, joint pain. I had the celiac panel done 2 months ago and it came back negative. Well, I had a colonoscopy and my results were: precancerous polyp and some flattening of the small intestines. My Gastro. doctor asked me if I had ever been tested for Celiac Sprue. I said "Are you kidding me?!". My family doctor is the one that tested me originally and it came back negative". Long story short, I am being tested again for Celiac Sprue. If it is not Celiac, what else could cause the flattening of my small intestines? The doctor is throwing around the term IBS to me. I'm ready to scream!! If anyone has any advice, much would be appreciated. Oh yea, my family doctor told me I have subclinical hypothyroidism, but my GI doctor is saying it is clinical hypothyroidism. The GI doctor said that there is sometimes a difference within Lab companies.:(

posted in Celiac Sprue - 3 replies

I suspect I have Celiac disease

2008-03-27T03:08:35Z

I'm going to the doctor tomorrow to be tested for Celiac disease. I'm scared to death he is going to brush me off as a hypocondriac (sp?) I constantly get sores in my mouth , upset stomach, heart burn, bloating, etc.......... . I am also on Welbutrin and Effexor for depression and anxiety. I have had stomach problems my entire life. I also have joint pain in my wrists, knees, and ankles. I just want to start feeling better. How long did everyone take to get a diagnosis?

posted in Celiac Sprue - 11 replies

opportunity: celiac disease study

2008-03-18T23:53:40Z

One of the GF groups I belong to sent this along, and it looks like a great opportunity to help push the science of celiac disease forward. Please read all the way through before committing to participate, so you understand what it's all about. It's all online surveys so not too painful and way useful.

Cheers,

skooter

-------------------------------------------------------------------
GIG is sending this message on behalf of Melissa M. Smith, PhD(c), APRN , BC , CNS, Doctoral Candidate, Duquesne University - School of Nursing. No personal information was shared with anyone in the preparation of this e-mail.

Regards,
Gluten Intolerance Group

-------------------
Quality of Life and Coping Strategies Survey

The purpose of this study is to examine whether or not there is a relationship between quality of life and coping strategies for adults with celiac disease adhering to a gluten free diet. Participation is voluntary and requires completion of three surveys, which can be accessed from the link provided. Voluntary completion of the surveys will confirm consent to participate. The estimated time to complete all three surveys is approximately 45 minutes.

Links for 3 separate Surveys:

Demographic Information and Health and Diet History:

Webpage -
http://www.surveymonkey.com/s.aspx?sm=Cn31Ge8kjnaLIhFLUejteQ_3d_3d

Psychological General Well Being Index:

Webpage:
http://www.surveymonkey.com/s.aspx?sm=CdOOgxcS6x3N2w9MPvSa0A_3d_3d

Brief COPE:

Webpage:
http://www.surveymonkey.com/s.aspx?sm=5HDhQpLpJdqLAL9_2fuwOYBQ_3d_3d

DUQUESNE UNIVERSITY, 600 FORBES AVENUE, PITTSBURGH, PA
15282

CONSENT TO PARTICIPATE IN A RESEARCH STUDY

TITLE: What Is the Relationship Between Quality of Life and Coping Strategies in Adults with Celiac Disease Adhering to a Gluten Free Diet?

INVESTIGATOR: Melissa M. Smith, PhD(c), APRN , BC ,CNS

Doctoral Candidate
Duquesne University
School of Nursing
Pittsburgh , PA 15282
(W) (330) 363-3930

ADVISOR: Linda Goodfellow, PhD, RN
Associate Professor
Duquesne University School of Nursing
517 Fisher Hall
Pittsburgh , PA 15282
(412) 396-6548

SOURCE OF SUPPORT: This study is being performed as partial fulfillment of the requirements for the doctoral degree in nursing at Duquesne University . This study is supported by a grant from the Society of Gastroenterology Nurses and Associates

PURPOSE: You are being asked to participate in a research project that seeks to investigate whether or not there is a relationship between quality of life and coping strategies for adults with celiac disease adhering to a gluten free diet and to determine if there are any perceived causes that interfere with adherence to a gluten free diet

These are the only requests that will be made of you.

RISKS AND BENEFITS: There are no risks greater than those encountered in everyday life. The benefit to you will be knowing that you will help in identifying coping strategies of adults with celiac disease adhering to a gluten free diet and that the results may eventually result in the development of cognitive-behavioral interventions and/or educational programs designed to improve quality of life in people just like you with celiac disease.

COMPENSATION: You are not required to pay to participate in this study and you will not be paid to participate in this study.

A $500.00 honorarium will be given to the Gluten Intolerance Group in gratitude for their assistance in creating the link for you to complete the questionnaires. This donation will be used by the Gluten Intolerance Group for further research.

CONFIDENTIALITY: Your name will never appear on any survey or research instruments. If any personal identification is provided, your responses to the questionnaires will be deleted.

No identity will be made in the data analysis. Your responses will only appear in statistical data summaries. All materials will be destroyed at the completion of the study after all data have been analyzed and the findings have been reported.

RIGHT TO WITHDRAW: You are under no obligation to participate in this study. You are free to withdraw your consent to participate at any time.

SUMMARY OF RESULTS: A summary of the results of this research will be submitted for publication in a peer review professional nursing journal.

VOLUNTARY CONSENT: Voluntary completion of the surveys will confirm consent to participate. The estimated time to complete all three surveys is approximately 45 minutes.

I have read the above statements and understand what is being requested of me. I also understand that my participation is voluntary and that I am free to stop at any time, not complete the surveys and thus, withdraw my consent at any time, for any reason. On these terms, I certify that I am willing to participate in this research project.

I understand that should I have any further questions about my participation in this study, I may call Melissa M. Smith, Principal Investigator (330) 363-3930, Linda Goodfellow (412) 396-6548 Advisor, and Dr. Paul Richer, Chair of the Duquesne University Institutional Review Board 412-396-6326). If you agree to participate in this study, please click on the link provided and complete the questionnaires.

-------------------------------------------------------------------

posted in Celiac Sprue - 0 replies

Recipes completely gluten free

2008-03-06T01:11:55Z

If anyone has recipes they want to share, I would greatly appreciate it. My brother has celiac sprue, and a lot of the recipes I've found lately that claim to be gluten-free are only wheat free... frustrating. I am going to make him up a cookbook as his Christmas gift, so anything you want to give, I'd love it... Thank you

posted in Celiac Sprue - 5 replies

Gluten Free Girl

2008-02-03T04:50:14Z

Has anyone read this book? I am thinking about checking it out and would love to hear your review if you've read it.

posted in Celiac Sprue - 0 replies

favorite cookbooks?

2008-02-02T02:26:30Z

I'm in the process of writing a GF cookbook and am curious as to what your favorites are...and why.

Thanks!

-K

posted in Celiac Sprue - 0 replies

thyroid problems?

2008-01-26T05:14:38Z

has anyone here also been diagnosed with autoimmune thyroid disorder? I just found out that it's very common in Celiacs.

posted in Celiac Sprue - 3 replies

i need support

2008-01-21T08:01:07Z

ever since i went gluten-free, i have felt much better in general. but, now, when i accidentally ingest gluten- even in tiny amounts, the ill effects seem to be much worse than anything i ever experienced before. is this normal?

also, i am very frustrated because this latest "gluten stomach ache" (horrible cramps, nausea, gas, and burping) is apparently a result of a soup i made with nothing but g-f broth, g-f spices, rice noodles, beans, and vegetables. i have no idea why it has been making me so miserable. any ideas?

thanks.

posted in Celiac Sprue - 7 replies

'Ello.

2008-01-21T07:45:16Z

Hi. I may be, er, joining your ranks soon. I'm going to see a GI today to get tested. I have a couple of questions for you guys, though.

1) Before you went gluten free, did quantity matter as far as your symptoms were concerned? Or did certain foods set you off sometimes and not bother you at others? I find that I can eat certain things without consequence and then have to deal with the horrible bloated gas monster the next time I eat them.

2) I have a strange symptom that even my PCP couldn't explain. Whenever I get the horrible gas that won't dissipate, it is usually accompanied by a tenderness in my upper body and abdomen. It feels like I'm bruised, and it hurts my shoulders to wear a bra. Anyone experience that? If so, can you tell me what the heck it is?

posted in Celiac Sprue - 2 replies

now that I accidently ate wheat... what can i do?

2008-01-17T07:33:58Z

hey y'all, I'm new to the wheat-free/ celiac tribes and don't know how much overlap there is. I'm posting something here i posted in another, because I'm really hoping someone has an answer for me.

I'm glutten-intollerent. Not tested but it is so consistant that it's obvious. If i have even a little bit of glutten, the next day I'm bloated, gassy, diarrhea, coated tongue, and out of it. I've been so good.

Well, yesterday I got some sushi. I had my own tamari, but I didn't think to ask about the sauce on the spicy salmon rolls. Today I'm paying for it. these episodes can last 3 days for me and I have stuff to do. I'm traveling. I popped some glutten-enzymes, but I doubt that will help at this stage of the game.

Any advice on what to do now that I'm experiencing problems? I have a date tonight and I think i'm going to have to miss it.

posted in Celiac Sprue - 16 replies

Essential books for celiacs

2008-01-10T02:21:08Z

In my opinion, here are some books that I cherish. They made this journey a little easier to handle and a lot less mysterious.

Celiac Disease: The Hidden Epidemic by Peter H.R. Green and Rory Jones. Doctors Green and Jones are known in the field as THE Celiac Doctors. They are based in New York and head the major Celiac conferences in the East Coast. This book is a good guide for both the newly diagnosed as well as "old timers" to Celiac Disease. It explains the who/what/how/why of Celiac Disease and what you can do to help your doctor understand your needs.

Gluten Free Diet: A Comprehensive Resource Guide by Shelley Case, Dietitian. I went to a conference she was speaking at, and I think I took at least 10 pages of notes!! She breaks down the food you need to avoid, be careful of, and the foods you can and should have. As a dietitian, she is concerned about us celiacs eating the same 5 foods everyday at the expense of getting proper nutrition. She details alternate grains and how to cook and use them. She also gives sample 7 day diets for good nutrition. It is also worth noting that she is Canadian, and since the labelling laws are different between the us and canada, she makes understanding labels crystal clear. This book is almost overwhelming with the amount of information, so it is well worth the price. She also sells pocket guides to keep in your purse/pocket about what exactly is and is not gluten free.

Prescription for Nutritional Healing by Phyllis A Balch CNC. This is a large reference guide. I got mine from Whole Foods, but I've also seen it for sale at Costco! If you don't want to buy the whole thing you may be able to copy just the section on Celiac Disease and/or any related illnesses you have. This author gives natural remedies for almost every ailment under the sun, all arranged alphabetically. She tells you what supplements and vitamins to buy, in the order of importance, and why you need them. I follow the programs for Celiac Disease and for Low Immunity. I can't imagine trying to get well without the supplements she's suggested. The vitamins and supplements recommendations I got from this book really made a huge difference in the way I felt.

The Gluten Free Gourmet Cooks Fast and Healthy by Bette Hagman. Bette Hagman was recently honored by the Celiac Disease Foundation as a pioneer. She was the first to publish adapted recipes and start the conversation about Celiac Disease. All of her books are fantastic. I choose this one because it's a little lighter on calories. My only complaint is that I rarely bake enough to justify all of the different types of flours her recipes call for, so I end up wasting a lot of expensive flour. All of the recipes I've tried are amazing and tasty. I have even been able to feel comfortable enough with her recipes to experiment and personalize some of them with great success.

xoxo

posted in Celiac Sprue - 2 replies

Oats

2008-01-02T13:10:56Z

According to Shelley Case (see the essential books thread), celiacs can't have oats because of the risk of cross contamination on the equipment. At her conference, I learned about a company that makes gluten free oats in a dedicated gluten free facility. I ordered my first 10 pound bag and I AM IN HEAVEN!! It is so nice to have oatmeal again!! I also made my own granola and it was soooooo yummy.

the link is
www.glutenfreeoats.com

posted in Celiac Sprue - 3 replies

gluten free beer

2007-12-23T22:31:10Z

I want to drink beer again... anyone know what kinds of beer are gluten free?

does anyone know of a comprehensive list of gluten free beers...

posted in Celiac Sprue - 4 replies

We finally get a break with prices!!!!

2007-12-09T00:38:38Z

I went to a brand new Whole foods near me. They now carry the Whole Foods 365 Brand gluten free products that are MUCH cheaper than the other products. Here is what I found and the prices:

corn bread muffin mix $2.99
chocolate brownie mix $3.99
pizza crust mix $3.99
chocolate chip cookie mix $? don't know couldnt find the price
white cake mix $2.99
chocolate cake mix $3.99
muffin mix $3.49
sandwich bread mix $3.49

For the sake of comparison, the Whole Foods 365 sandwich bread mix is $3.49 while the Authentic Foods brand costs $6.69 and Pamela's wheat free bread mix is $4.69. Yay!! We can finally save some money with the whole foods brand!!!!!!!! Also, the box says they are made in a dedicated facility, so you don't have to worry about cross contamination getting you sick.

If your whole foods doesn't have them you can request them. Just ask the store manager. You might want to look it up on the Whole Foods website and/or call the Pasadena store where I saw them to request the sku numbers for your store. 626.204.2266

Happy eating

posted in Celiac Sprue - 0 replies

poly glandular syndrome

2007-12-05T23:39:46Z

please let me know about all the other effects an d treatments...
i have a thyroid thing
and lupus, and now a
lymph thing.. they are testing now..

the endocronolgist said ,
when so late diagnosed,
other systoms fail

posted in Celiac Sprue - 0 replies

what's on dining cards?..

2007-10-31T01:06:05Z

What is written on people's dining cards? How are things phrased? I love the idea of alerting waiters and chefs of our dietary restrictions in this way, and need to make some up for me and my daughters (no gluten, no dairy, no corn). Thanks!

posted in Celiac Sprue - 1 reply

dental problems....?

2007-10-31T01:04:13Z

was curious if anyone here has had, or knows of anyone who has had abnormally bad dental problems...

I'm 26, and only just recently found out that I have celiac. I've been battling numerous health issues for most of my life, and this last April had to have all of my teeth taken out... After years and years of constantly having my teeth rebuilt, I developed a upper and lower jaw bone infection, and my 2 dentists jointly decided that it was in my overall best interest to just have them pulled. It didn't matter how hard they or I tried, they just kept dying... They would be fine for about a year, and then by the end of the next year, they had all died again...
Now, being 26, I consider this to be pretty extreme...

posted in Celiac Sprue - 16 replies

GF Candy List

2007-10-21T20:13:50Z

Yay!!!

http://magickhand.googlepages.com/GFCandyList.pdf

posted in Celiac Sprue - 0 replies

GF potluck, yummy!

2007-10-19T06:52:15Z

I've just returned from a gluten free potluck held by a local group of celiacs in Sunnyvale, Ca. - about 20 people.

It was pretty amazing to not only not need to stress about the food, all of it wonderful, but you could openly ask about and discuss preparation and ingredients without fear of offending. Hell, many dishes were clearly labeled (soy, no soy, no dairy, no bean flour, etc.) Truly amazing experience.

Do any of you attend local groups like this?

posted in Celiac Sprue - 0 replies

Still having a very hard time learning all the precautions I have to take.. have many questions..

2007-10-16T15:50:33Z

Hi all,
Its probably obvious how bad I Hate living without gluten.. sorta getting used to it... sorta..
I really need some pointers.. I've read celiac.com and many other helpfull links and posts..
However, there's nothing like straight answers from more experienced people who have been dealing with this on a daily basis.

I get the impression that my kitchen should be 'hospital' clean.. I have no problem with a clean kitchen..
but then I'm also getting that with normal flour eaters in the house.. I should just have a complete separate GF area?
Do I need to buy all new everything? Is it okay to just run the dishwasher a lot? Is it okay to just keep things covered and to wipe stuff down before and after food prep? How obsessive do I need to be with this?

Any helpfull advice would be greatly appreciated.. I get to the point where I think I'm doing great.. then sick slaps me down again..
then I find out I've left something important out (or in as it may be)...
For example: I know I can't have Soy Sauce or Soy Solids.. This means no Soy of anykind? No Silk for my coffee?
Where do I draw the line with all this info??
I just want to feel better :^\

posted in Celiac Sprue - 14 replies

Gluten Free Bag Lunches

2007-10-09T21:26:32Z

I was sitting here munching on my rice crackers, hummus and cheese when I thought it might be fun to exchange some gluten free lunch ideas. I love leftovers from dinner, but when that isn't available... I like hummus with veggie sticks and crackers, Amy's canned lentil soup, fantastic brand black bean and split pea cup-a-soups, Thai Kitchen instant noodle soups, yogurt, nuts, the occasional Amy's frozen meal (I like the cheese enchiladas), greek salad with garbanzo beans, baked tofu with rice, nori rolls with GF tamari. I'm a vegetarian..as you might have gathered.. What great ideas have you come up with for the midday portable GF feast?

posted in Celiac Sprue - 4 replies

newbie

2007-09-26T03:30:21Z

I am excited to find this group.
I have been eating the gluten-free diet for 25 years now and am glad there are groups like this so we can help each other out.
Shel

posted in Celiac Sprue - 1 reply

For the kiddos w/ Celiac

2007-09-22T20:54:20Z

http://twincitiesrock.org/

posted in Celiac Sprue - 0 replies

How did you find out you are a Celiac?

2007-09-22T00:30:28Z

I found out about 3 years ago when my acupuncturist mentioned matter-of-factly one day. "Oh, by the way, did you realize that you are allergic to wheat?"

I said, "WHAT???????"

I think the rest of my family is too, but no one is willing to listen.

posted in Celiac Sprue - 12 replies

I'm leaving the Tribe

2007-08-19T01:24:13Z

I had my procedure done yesterday and the results of the biopsy is that I don't have Celiac, so I will be leaving the Tribe.

Thank you everyone for you support.

Azeeza

posted in Celiac Sprue - 2 replies

what to do when eating out? please help

2007-08-17T06:08:14Z

hi everyone! so glad this group is here!

so, after many years of lots of various health probs (everything from skin and nerve irritations, muscle spasms, dental probs, mouth ulcers, the works) i finally figure out i have celiac (my stomach started seriously freaking out and i stopeed eating wheat and ... felt better). It also runs in my family - helpful because everyone is understanding (though most refuse to get tested).

anyway, the problem is this: i love to go out and eat. but figuring out what i can and can't eat has been really hard in restaurants. a woman i met who has celiac said that generally indian is ok, as long as nothing is breaded and thai stuff with peanut sauce is ok because they don't use soy sauce in peanut sauce. is this true? are there certain foods that we can eat or is everything on the menu (minus an undressed salad) off limits? (i know i have been hit pretty hard with some teas that have barley in them.)
are there specific questions i have to ask the (often non-native english speaker) servers?
please help!

thanks,
karen

posted in Celiac Sprue - 13 replies

Soy Wrappers

2007-08-10T18:25:13Z

Traipsing through Japan Town store here in S.F., I found this great little product to add some diet variety.

http://www.jfc.com/newproducts.php?nps=sushiparty

For those that make their own lunches or are forever trying to find a way to keep your kid interested in eating within a restricted diet, these are pretty fun and awesome, and non-GMO to boot! The ones I found were a pack of ten for $3.60 - not exactly cheap but still a third of what I've found so far online. I found these at Super Mira Market - 1790 Sutter St. @ Buchanan

posted in Celiac Sprue - 1 reply

Are you satisfied?

2007-08-05T22:23:50Z

After poking around posts and topics here, in addition to going around
to various stores in S.F., I wonder how satisfied everyone is with the
selection of items and if not, what are people doing about it?

For myself, I'm fairly new to the whole GF thing, but what I'm seeing
in the stores is fairly disappointing. I've recently visited
Andronico's (Inner Sunset), Rainbow Grocery, Whole Foods (california
st & soma), Real Foods Co. (stanyan & Cole) and Tower Market (Mollie
Stones). And although some of the staff, and even a store manager
have been involved in my quest, and they've been responsive at least
in conversation, I'm finding the motivation and product selection to
be scattered and inconsistent.

My experience boils down to either the stores don't carry items
because nobody buys them or the ones they do, are so frequently sold
out they can't keep them on the shelf. Either is a bad situation.
And I don't know about anyone else, but from my perspective, various
flours, baking mixes, $6 packages of crackers, a few puffed-rice
cereals, potato chips, breakfast bars, frozen loaves of bread, cookies
and brownies just don't cut it for a balanced and healthy diet.

I can see that perhaps my newness to this whole shebang may be biasing
my experience, but from where I sit, these products should be
available locally - I should, or anyone, should not have to waste time
and energy resources (e.g. fuel, parking, etc.) driving across town to
specialty stores for the few stocked items. I think with our
collective interests we can motivate retailers to carry a broader
range of items. They all have said "we get a lot of requests" but
they're still not stocking their shelves because they don't think
people will buy them before code dates, etc.

It's a catch 22. I can see that we collectively won't shop a store
that doesn't have these products readily available, that means stocked
and easy to find, and they won't stock them unless there is enough of
a demand. I'm for gathering our resources, voices, and pocket books
to collectively push to get out locals stores to stock foods that will
allows us a healthy diet with easy to find products.

Most notably, the managers I spoke with, I'd mentioned that "we all
have online support groups and we share info...you stock it...we'll
share the info and come buy it..." and this was met with raised
eyebrows and fast feet to give me a tour of GF items in the store.
Best response I got was from Tower Market/Mollie Stones, and the
bakery person said they were considering turning their on-site bakery
into the GF regional kitchen to distribute to the other stores.

Thoughts? Ideas?

Thanks,

skooter
highly motivated celiac

posted in Celiac Sprue - 2 replies

episode recovery

2007-08-01T16:21:21Z

ok, so I just recently became aware that I have dermatitis herpetiformis....the hard way. Let's just say it was suspected and I decided to test the theory and my hands and forearms are moderately broken out, irritated and a little painful.

I haven't yet been to the doctor and I'm rather disinclined to subject myself to most western medicine. For any problems I've ever had with my health I've always found natural alternatives that are cheaper and less invasive. I'd prefer to explore along that path, if possible.

So the question is, is that possible with DH and what are your experiences?

Is there a way to quickly calm down the symptoms and "flush my system"?

Thanks for any and all suggestions.

posted in Celiac Sprue - 5 replies

Another Interesting Article

2007-07-30T15:04:57Z

In my local paper I read another article which refered to Celiac.

The topic reads:

Leg cramps may signal celiac disease.

Apparently a person had leg cramps and was diagnosed with celiac, and when this person followed a gluten free diet, the leg cramps went away.

Interesting...

Azeeza

posted in Celiac Sprue - 6 replies

A newish blogspot

2007-07-16T11:23:51Z

I know there are lots of these out there, but I thought it pretty cool that this one is maintained by a 14 year old boy, whose dad and brother are celiac http://dylansglutenfreedom.blogspot.com/

I personally think its pretty impressive. :-)

posted in Celiac Sprue - 0 replies

Article in Paper

2007-07-09T13:34:26Z

I read an article in my paper this morning regarding Celiac! It says that 1% of Americans have Celiac Disease.

Some of the symptoms include:

* Intestinal gas
* Distention and bloating
* Abdominal cramps
* Chronic diarrhea
* Constipation
* Anemia
* Weight loss or gain
* Depression

Interesting. I have most of those, but not anemia and not depression, unless there is a reason for it.

Also, I made gluten free cookies from the Gluten Free Pantry mix and I ate two of them while on a trip out of state. 15 minutes later, I was sort of sleeping and I had the most horrible cramping and I had a bad accident, but I didn't know it until my pants were wet. My poor husband pulled into a rest stop and I had to clean my underwear in the toilet because a bus full of senior citizens pulled in and were waiting in line to use the bathroom.

Any how, would anyone that was Celiac have such a severe reaction to gluten free products? I'm so confused about what the heck is going on. I've been on a diet of rice and potatoes for starches and occasionally non gluten free breads.

Has anyone else had such an experience with gluten free products?

Azeeza

posted in Celiac Sprue - 0 replies

Biopsies and inconsistant reactions

2007-07-07T21:15:13Z

Hi everyone. I'm hoping that some of you might have had a similar experience you'd be willing to share, or some advice...

The past few weeks I've been having horrible cramping and morning sickness (no, I've no chance of being pregnant), so started eliminating things out of my diet to see if the cramping would stop. I remembered that years ago, when I was doing Atkins, the IBS and mood swings completely stopped. When I introduced wheat and carbs back into my diet, it took years for those effects to come back again.

Lately, I've been trying very hard to cut out wheat and certain grains like barley out of my diet, but sometimes I slip up - and have no ill effects. It's like a certain amount needs to be ingested before the bad effects kick in. Is this true for others?

My theory is that my villi recovered during Atkins, but they might be damaged again in places. I have no idea if this is true, though.

I would like to get tested for Celiac, but from what I understand, you need to be eating wheat for the biopsy. So my question is, if this is so, is there a certain period of time during which one should be eating wheat, and does this also apply for the blood test as well? I won't be able to get a referral to a Dr. until the end of the month.

Thanks everyone!

posted in Celiac Sprue - 10 replies

Tested Negative for Celiac

2007-07-04T02:04:04Z

I'm sorry that this is my first post, but I thought I had Celiac and my test came out negative for the disease.

Prior to the testing, I thought I could use alternative glutens for cooking... well, I can't.

I bought the book: The Gluten-Free Gourmet Cooks Comfort Foods by Bette Hagman. It's a hard back book and it's in pristine condition.

If anyone is interested in purchasing the book from me, please PM me. I'll even include four Gluten-Free Pantry mixes with the book.

Thanks so much,

Azeeza

posted in Celiac Sprue - 5 replies

Anyone Interested in Gluten Free Book?

2007-06-19T14:21:43Z

I have a great gluten free cookbook that I'd like to sell. I'll include four gluten free mixes with the book.

PM me if interested.

Thanks,

Azeeza

posted in Celiac Sprue - 0 replies

Skin rash

2007-05-27T06:00:29Z

I just confirmed the ingredient list from Mary Kay.
And tehy were so nice about the items that di have even barley.
and even the items that may have unknown source

Have any ofyou found any other source lists?
I am looking for sun screen and shampoo

I get so itchy

posted in Celiac Sprue - 1 reply

Celiac and Vegan?

2007-05-26T03:40:40Z

My Doctor asked today that I read his specific books and consider Vegan for fobromyalgia.

would any one please give any ideas on the relationship with healing the small intestines?

Thank you all

posted in Celiac Sprue - 0 replies

damn.damn.damn.damn

2007-05-17T04:13:40Z

So, one of my good friends, also a celiac, has found a link between celiac disease and endometriosis. She has been seeing a doctor that specializes in endometriosis and most of her patients are celiacs!! My friend has noticed that her endo gets much worse when she eats SUGAR.

My cramps are sooooooooooooooo bad that I am beginning to think I also have endo AND it gets worse when I eat even one tiny bite of sugar. I've been tested for endo, and my doc said I tested negative, but I am going to insist on another test because it was soooooo bad this month that I was going to get myself admitted to the hospital for a shot of demerol, which is the shot they give to women in labor to put them to sleep. I sleep for 2 days when I get the shot, but at least I don't hurt!!!

posted in Celiac Sprue - 0 replies

PF Chang's

2007-04-17T04:09:37Z

I had dinner on Friday night at PF Chang's China Bistro and the dumbass waiter gave me my soup WITH soy sauce even though I specifically requested none AND I told him that I had an allergy to wheat. It took me 4 days to recover and to stop being angry!!! Then, at my boyfriend's insistence, I called the general manager to complain.

She was THE NICEST woman and she told me that she was surprised it happened because they actually have a GLUTEN FREE menu!!! Infact, she said that they are one of the few restaurants that has such a menu. Aparently the problem is that the servers do not understand that gluten=wheat=soy sauce and practically everything they serve has soy sauce!! Anyway, they are going to retrain the staff.....

I just thought you all would appreciate knowing that they have a GF menu if you ask for it.

posted in Celiac Sprue - 6 replies

Gluten Free Beer

2007-03-14T01:36:12Z

Hi Gluten Free People -
I was at Whole Foods in Seattle today getting stuff for my valentine's day party - and picking up some wine and beer (for the gluten eaters). The nice man working in the beer section showed me to their new gluten free beer. I almost kissed him on the lips. Now I am kicking back with my first beer in several years and it's even kind of good :-) Thought you might like to check it out.

posted in Celiac Sprue - 5 replies

Hidden gluten trap! How do others cope?

2007-02-28T17:44:37Z

After six months plus of avoiding any and all gluten/wheat not to mention being smug about it -- I fell into the trap yesterday and had some chocolate with "nuts" in it.

I'm still going thru' the reaction stages. While the worst of the bouncing off the ceiling, pain and the "can-I-please-get-away-from-myself" whine is reducing (I'm detoxing furiously, gritting my teeth on the pain and trying not to beat myself up for being "greedy"). I do find the violent emotional swings that go with the territory so out of keeping with my nature and personality that it's disturbing and exhausting. No nor do I find it dramatically exciting or fun.

Do others go thru' this Jekyll/Hyde scenario ... I was just evil last night? Fortunately only vile "giving-off" attitude and didn't hurt anyone.
How do you all cope with it? Or am I more messed up than I know?

I feel as if a truck hit me and that I could sleep forever.

Anyone have a series of safety tips if this is something we're always faced with?

posted in Celiac Sprue - 0 replies

GF labeling survery for FDA

2007-02-26T18:24:39Z

ACDA Launches Survey to Assist FDA on Gluten-Free
Labeling

The FDA's proposal for labeling products
'gluten-free' was
published on January 23, 2007. The FDA has
requested
feedback from consumers on several issues
relating to the
gluten-free diet, and how individuals make
choices about
gluten-free products.

The American Celiac Disease Alliance (ACDA) is
launching
a survey focused on several questions posed by
the FDA.
The survey was developed by dietitians with
expertise in the
gluten-free diet and who are associated with the
Dietitians in
Gluten Intolerance Diseases (DIGID), a specialty
subunit of
the American Dietetic Association.

Please take a few moments to complete this very
important
survey. The results will be compiled and
presented to the
FDA by the ACDA.

To access the survey go to the ACDA website
www.americanceliac.org/news.htm .

Your comments will help the FDA decide what type
of GF
labeling will be allowed in the United States.
The survey
closes on March 15.

Thank you for being an advocate for celiacs.

About the ACDA
The American Celiac Disease Alliance was
established in
March 2003 to provide leadership on public policy
issues
affecting those with celiac disease. The
non-profit serves
as a national umbrella organization representing
all segments
of the celiac community -- research centers,
physicians,
patients, food manufacturers, print media, and
the service
industry.

More information on the FDA proposal:
The FDA has prepared a series of questions and
answers to
help consumers understand the provisions of the
proposal.
For a copy go to:
www.cfsan.fda.gov/~dms/glutqa.html.
For a copy of the gluten-free labeling guidelines
go to:
www.cfsan.fda.gov/~lrd/fr070123.html.
__________________________________________________
reply to this post

posted in Celiac Sprue - 1 reply

I am so sick and tired of doctors who do not KNOW about Celiac Disease

2007-01-26T06:24:59Z

Sorry, just venting here, but I spend my entire office visit EDUCATING THEM about Celiac Disease.....

I went to a see a nutritionist today. What a waste of time and money that was!! I went because I am concerned about not getting proper nutrition because I eat probably the same 5 things everyday and that CANNOT be good for me.

She knew nothing about alternative grains.....
She knew nothing about "hidden" gluten....
She did not fully appreciate how hard it is for us....like how you cannot just show up at a fast food place and eat and how you basically have to cook every single thing that goes into your mouth, including the doggone salad dressing for your salad.....

UGGGGHHHHHH

She recommended a protein powder for me and 2 supplements, all of which contained gluten. i just wanted to scream at her for wasting my time!!!

posted in Celiac Sprue - 5 replies

Bakery in NYC, you can order online

2007-01-25T20:06:34Z

There is a bakery in New York City that is sugar free, gluten free, wheat free and vegan!!!

http://www.babycakesnyc.com/

and they do MAILORDER!!!

More people should be doing this!!

posted in Celiac Sprue - 4 replies

Whole Foods... Can I kiss them...?

2007-01-24T03:17:44Z

OH MY GOD YOU GUY's, this is ssssssssssssssssssssssooooooooooooooooooooooooooo GOOD! I just got a bunch of the GF stuff at Whole Foods.... I'm eating thier cherry pie, and I started crying, CRYING! 'Cuz it's so damn good! I've been having a hell of a time eating recently, and have basically been starving... This just COMPLETELY reduced me to tears... I live in Santa Rosa California, so it's definately made it to the West Coast.... Please, PLEASE! You all have to try it! I'll let you know how the other things are, but Holy Crap!, this is going to make the Holidays so much easier to deal with..... YAY!

posted in Celiac Sprue - 6 replies

Hello

2007-01-18T05:10:27Z

I'm new! Nice to meetcha

posted in Celiac Sprue - 2 replies

POTS (postural orthostatic tachycardia syndrome)

2007-01-17T20:37:22Z

My celiac son has started experiencing syncope where his heart speeds up and he passes out for as long as 5 minutes at a time. POTS is a collection of symptoms that appear to explain what is happening to him but the causes are very wide spread. Some of the causes associated are diabetes, anemia, folic acid anemia, or Vitamin B deficiencies plus a host of heart, brain, or physiologic problems. Of course I am concerned that his celiac is partly at fault. We are working with a pediatric cardiologist now but I am at a loss as to how to connect with a doc that can check some of the other possibilities.

Does anyone else have this?

posted in Celiac Sprue - 4 replies

Best cookies EVER!!!!

2007-01-17T16:13:26Z

I just came from my Celiac Support Group, and at the end of the meeting we all bring food to share and taste. Someone brought along these cookies that taste EXACTLY like Gluten-Free Oreo's and they were SOOOOOOOOOO GOOD!!!

They are from Kinnikinnick and they are called Kinni-Toos. I just ordered 3 packages on the website, but I will warn you that their website is really frustrating. It makes you register or else it's practically impossible to check out. It's worth it though, these cookies are YUM.

https://secure.kinnikinnick.com/index.cfm/fuseaction/Shop.Main/productidupc/62013300364/prodCatID/12/viewtype/info.html

posted in Celiac Sprue - 1 reply

Do people die from Celiac?

2007-01-15T20:13:27Z

I watched a show on Vh1 today about Chris Rock.
They said a friend of his "lost his battle with Celiac Disease".

Is it true?
I've never heard of this before...
I'm very carefull not to touch gluten ever...
Can this really kill me, or is that only if you don't take care of yourself?
Does it have something to do with complications or what?

posted in Celiac Sprue - 10 replies

Spread the Word-GF BEER!!

2007-01-14T10:06:46Z

Hi all, I am your new moderator. I am excited to watch this tribe continue to grow, as I know there are more of us out there!

I don't know about anyone else, but I miss drinking a beer once in a while-it has been nearly 4 years since my last beer...sniffle...sigh

Well, I was just informed about a brand new GF beer! Bard's Tale Dragon's Gold, made by Bard's Tale Beer. They are just beginning to distribute and need all our help in requesting it at our local stores. Please go to there website, click on your state, print up the request, sign it, and take it to your local store. If your lucky it might even be available already in your area:)

http://www.bardsbeer.com or email sales@bardsbeer.com

Looking forward to some good conversation, celiac research share, networking and gf recipes!

Many Blessings & Be Well, Azalyne

posted in Celiac Sprue - 12 replies

Breaking the Vicious Cycle: Specific Carbohydrate Diet-Crucial info to have!!!

2006-12-01T22:03:30Z

Hello all,
I want to apologize for not being very active these past few months. My 3 children have continued to struggle with intestinal issues, leaky gut-undigested food & one child passed a juvenile poylp. Oy!! Anyhow, after mind numbing research I came across a book that is changing all of my perceptions about what Celiac's Disease is and how it is best treated, apparently the original research done at the turn of the century was not focused on the GF diet as the solution, that is a recent development. Anyhow, it is a lot to explain, but for the first time I see my children starting to heal their damage little guts, so please read the website at least and I think it is worth buying the book. www.breakingtheviciouscycle.info & the book is "Breaking the Vicious Cycle" by Elaine Gotschall. I have to say that I feel ultra blessed to have found this info, but at the same time extremely shocked that I had not heard of this until now, as we have been struggling with these issues for nearly 5 years! So empower yourself and know all sides of the research!
Be Well, Azalyne

posted in Celiac Sprue - 5 replies

Welcome

2006-06-16T22:20:10Z

man, i really dont even know where to start... i just got the call yesterday and dont know whether to be freeking out or not...

anyone have this condition that would like to share stories or advice? I have yet to talk to anyone else with it....

posted in Celiac Sprue - 5 replies

IHOP eggs

2005-09-08T15:20:19Z

Heads up- Ihop puts wheat in their eggs. It says so on the menu, and I checked with the sever and cooks to make sure. I was told they put wheat in the eggs to make them "fuffy"

posted in Celiac Sprue - 2 replies

!!!!!!!!!

2005-08-26T20:53:37Z

ok i have already called customer relations but i also want to warn all of you gluten-free eaters as well!

I just microwaved an Amy's shepards pie like normal and was horrified at what i saw halfway through eating it. I followed the directions perfectly as they are printed on the box in a working newish microwave and the plastic coating on the little tray/bolw bubbled up and peeled off in my food!!!! PLEASE BE CAREFUL!!!! I can only asume they will recal this item as this is VERY dangerous, so if you have one of these items, or any other amys items in a tray in your freezer, dont eat it - call the company and see what is going on. They have not called me back yet so they wont have any official info on it but i will keep you guys updated!

I have always been very happy with amys products but i am terrified of what could have happened. I may be freeking myself out but i feel like there is a little peice of something stuck in the back of my throat!!!!

posted in Celiac Sprue - 1 reply

unnesesary surgery?

2005-08-26T20:42:57Z

how dumb. my blood comes up "suggestive" of celiac sprue. kaiser wants to do a biopsy to confirm. almost everybody i talked to said not to bother because the blood test is enough blah blah blah but i do it anyway, right? nothing, no sign of celiac sprue. almost a sigh of releif for not having to be on the strict life-long diet but still a little unnerving because of course now i dont know what all my "supportive" symptoms means.

get another call back from my gi doctor today and he ordered me more blood tests to again confirm that i may have it. aparently the sprue can be patchy and not affect the whole intestine and he could have just missed it. now my question is simply, what the hell? if they could do a few blood tests to confirm it in the first place then why did i need to go in and have evasive surgery done? anybody watch that 20/20 about unnesesary surgery? creepy....

posted in Celiac Sprue - 7 replies

oregon glut-free eating

2005-07-18T00:30:52Z

ok pardon if this is a repost but did anyone see the article in the paper? i am not sure what paper it was in but it was a happy day for me when i read it. there was a list of restaurants in oregon to eat at - including mcdonalds (i dont really beleive a word mcdonalds sais but whatever), wendys (go online to the websites of these fast food chains and look under the nutrition info, you will see the glut free menu!), outback steakhouse (yay! just walk in and ask for a glut-free menu), and others. message me for the complete list...

ok heres the great news, glut free pizza - and DAMN good pizza too! The people working at talericos mercado in lake oswego swear they eat it all the time just because of its wonderful taste. i have to admit that i had a stomach/gut ache when i ate it (i am a celiac) but this could have been either from being new to cutting gluten out and still going through random body pain, or the fact that the pizza was the shit and i ate almost the whole thing to myself... check it out people, let me know how the tummy feels when you are done so i can brave the pizza once more!!!!

posted in Celiac Sprue - 0 replies

PANCAKES

2005-06-21T21:09:56Z

I am eating yummy, fluffy fulfilling pancakes right now thanks to Bob's red Mill...

get you some!

posted in Celiac Sprue - 0 replies

sorry everybody...

2005-06-05T15:35:27Z

this will probably disapoint some and i have no idea what will happen to my tribes but it is time for me to go.

i started posting on tribe for fun, and that was alwaya my intention. the minute it goes from fun to hurtfull is when it is my time to go. a tribe member who i considered a very good friend is trying to spread rumors to hurt me and it is working, so i am stepping down and out.

contact info if youd like to reach me:
pslightlypsychotic@msn.com for e-mail and msn messenger
whostolemycrayons on yahoo messenger

thanks to all, this tribe experience has been really fun. its a shame it had to be completely and utterly destroyed for me but sometimes people just dont understand how much they are hurting others or they just dont care.

love you all
crayons

posted in Celiac Sprue - 1 reply

Genetics

2005-05-20T14:35:17Z

Greetings!
My Mom just found out that she has celiacs and I am wondering if anyone knows about the genetis of this disease!
blessings

posted in Celiac Sprue - 3 replies

wow, i am feeling really crappy...

2005-05-19T14:38:24Z

ok so i know what the symptoms are and i am wondering if maybe i feel most of them so hard core now because of some psychological reason. I am sooo tired, week, dizzy, depressed, irritable, not able to concentrate...

what to do what to do. does it kick in this hard core with anyone else?

posted in Celiac Sprue - 8 replies

Here to support my friends

2005-05-12T19:03:44Z

I am here to support all my friends!!!

posted in Celiac Sprue - 4 replies

Loads of info here

2005-05-06T21:44:13Z

Hi there,
I am about 4 years in, so if you need recipes or have questions I have done my research and hope to be helpful:) Hope Breakfast tomorrow is easier:) I posted in the gluten free eaters tribe, but it is well worth the repost. If you have a yahoo email account you can sign up for a gluten free veganrecipe/information share group. Info about this group can be located here: groups.yahoo.com/group/Veg...nd-Gluten-Free/

Also just to say, even if you are not vegan or have no desire to be vegan, this website has an unbelievable amount of recipes in their archives.

Blessings, Azalyne

posted in Celiac Sprue - 4 replies