Lisa

i am trying to figure out what IBS is exactly. what are the symptoms? my entire life i have never had regular bowel movements and i am wondering if they are IBS related.

THANKS!

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Twenty percent for first degree relatives and then throw in your symtoms and I would say your odds are pretty darn good.

I don't know why this link won't work, but I copied and pasted, from www.celiac.org

Celiac Disease Symptoms

Adults

Celiac Disease may appear at any time in a person's life. The disease can be triggered for the first time after surgery, viral infection, severe emotional stress, pregnancy or childbirth. celiac disease is a multi-system, multi-symptom disorder. Celiac Disease symptoms are extremely varied, can often mimic other bowel disorders and are not always gastrointestinal.

Children

Infants, toddlers, and young children often exhibit growth failure, vomiting, bloated abdomen and behavioral changes.

Symptoms of Celiac Disease May Include One or More of the Following:

Recurring bloating, gas, or abdominal pain

Chronic diarrhea or constipation or both

Unexplained weight loss or weight gain

Pale, foul-smelling stool

Unexplained anemia

Bone or joint pain

Behavior changes/depression/irritability

Vitamin K Deficiency

Fatigue, weakness or lack of energy

Delayed growth or onset of puberty

Failure to thrive (in infants)

Missed mentrual periods

Infertility male & female

Spontaneous miscarriages

Canker sores inside the mouth

Tooth discoloration or loss of enamel

Have You or a Family Member Been Diagnosed With the Following?

Type 1 Diabetes

Chronic Fatigue Syndrome

Fibromyalgia

IBS

Eczema

Sjogren's Syndrome

Peripheral Neuropathy

Thyroid Disease

Dermatitis Herpetiformis

Osteoporosis

Thank you for your post. I take Omeprazole and have considered it gluten free.

Thanks. Is there a timeframe where I should feel better as far as all these crazy GI problems are concerned? I have not eaten anything with gluten since yesterday morn and should prob carry on a few more days to see if I have results. I just get ansy and want a "quick answer" "quick fix"

Unfortunately, if you do have Celiac or a gluten intolerance, there is no "quick fix". Healing can being to occur within days and it may take up to several years to totally heal. Everyone is different as it depends on the amount of damage done. And the diet is for life.

Eating gluten free, as I said, is complex. Old toaster, wooden spoons, colanders, scratched pots and pans, medicines, vitamins, shampoo, lip sticks/balms, toothpaste, soy sauces, oatmeal are just a few of hidden sources of gluten.

Hi. My doctor told me last week that he thinks I may have celiac disease. I was diagnosed 5 yrs ago with IBS and am tired of suffering and went to a new dr. He ordered lots of bloodwork and stool samples. He told me to go Gluten Free for a week and see if I feel better. This will be hard. Is going gluten free the only way to really know or will my bloodwork be enough to let him know? I really want to feel better and so if it means going gluten free, then I will but I do not want to do it if I don't have to. Any help or suggestions will be greatly appreciated. Thanks so much!!

HELLO and welcome to this site. It 's the best source around.

There are three ways to diagnose Celiac.

1. Celiac Blood Panel

2. Endoscopy and Biopsy

3. Positive Dietary Response

Each on it's own is a diagnosis as well as supportive testing. The only truly accurate test is a positive dietary response (a true and full gluten free diet). The blood work can show false negatives and the biopsy can be hit or miss in the expansive small intestine.

The gluten free diet, for the most of us was a welcome challenge. Is it hard, you bet it is especially in the beginning. It can be very complicated and the learning curve is steep.

I would suggest that you not begin the gluten free diet until you decided on further testing. You will want the optimum accuracy. You do have an option of beginning the diet to see if you have a positive response, this will obscure further testing. But you may have your answer.

Hope this was helpful.

I smoked for a long time and never had any gluten reaction. Many other members here smoke and they are highly sensitive. Although, I believe that manufactured cigarettes have an ingredient list about a mile long.

As Ursa mentioned, as a non smoker, smoking 3-4 cigarettes would certainly make you nauseated.

Can anyone recommend good websites that provide info/support on kids who are celiac?

thanks

This is a good site. We have lots of moms with Celiac kids and they are very willing to share their time and experience.

Here is information about R.O.C.K. (Raising Our Celiac Kids):

https://www.celiac.com/articles/563/1/ROCK-...roup/Page1.html

Danna Korn founded R.O.C.K. in 1991 after her son, Tyler, was diagnosed with celiac disease. It has grown to international proportions, helping families all over the world deal with the unique challenges of raising a child on a gluten-free diet. When children are diagnosed with celiac disease at an early age, they usually have a severe intolerance to gluten, and are often extremely sick when ultimately diagnosed. Most parents share horror stories of visiting several doctors before finally arriving at a diagnosis, and are frustrated, exasperated, and angry, yet relieved to finally have a direction in which to turn. Sometimes it helps to talk about it, and it always helps to have some guidance when initially diving into the gluten-free diet.

Raising Our Celiac Kids is a support group for parents, families and friends of kids with celiac disease or gluten intolerance. We welcome families of autistic kids involved in a gluten-free/casein-free dietary intervention program. We concentrate on dealing with the unique challenges that we have, including:

Finding "fun" gluten-free treats for kids

Menu ideas for school lunches, quick dinners, and sports snacks

Helping the kids to take responsibility for reading labels, cooking and planning/preparing food

How to prepare for unexpected birthday parties and food-oriented activities at school, church, and elsewhere

Halloween, Easter, and other special days - how do we include our kids safely?

Educating day-care providers and teachers - without burdening them

Dealing with grandparents, babysitters, and "helpful" friends who offer gluten-containing foods to our kids

Ensuring our kids won't cheat, and what to do WHEN they do

Sending kids away to camp, friends' houses, and other times when we're not around to help

The psychological impact of growing up with celiac disease (peer pressure, teenage years, and more)

What do R.O.C.K. chapters do?

R.O.C.K. chapters have R.O.C.K. parties! How often you meet will be up to you and your chapter members, but we suggest meeting every two months to start; you can judge from that point whether you'd like to meet more or less often. We'd like to eventually have a chat room, where local chapters can talk to each other or with other chapter members. (In the meantime, people can chat at Open Original Shared Link.

What goes on at a R.O.C.K. party?

R.O.C.K. parties are for the kids and the adults. The kids enjoy gluten-free food and play, while the parents exchange new-product information, questions and concerns, and anything that they feel is pertinent. You may invite speakers (child psychologists, pediatricians, pediatric gastroenterologists, dietitians), and even provide entertainment (clowns, face painters, toys) for the kids. Remember your community centers - they often have teenagers who will entertain the kids - for free!

Remember, you may have just a few families at first, but "build it and they will come" - keep it in mind!

Should I start a R.O.C.K. chapter or do something on my own?

I don't personally profit from any R.O.C.K. activities, so it doesn't benefit me either way. My vision for R.O.C.K. is to provide accurate, supportive information to families of gluten-free kids to make their lives easier and their kids' lives more enjoyable. The more cohesive we are, the more credible we are to new members, vendors, and the gluten-free community as a whole. If you decide to pursue a group on your own, I sincerely wish you the best of luck and hope you'll ask me for help in setting up your group if you need it.

If there isn't a R.O.C.K. chapter in your area yet and you're interested in starting one,

please contact Danna Korn at danna@celiackids.com.

R.O.C.K. Chapters in the United States

Hi all. I'm new here. I was recently diagnosed with celiac after having a biopsy done (blood tests were all normal). My question is, I've been having severe hair loss problems since last summer. I've read that this can be related to celiac and poor absorption. I'm hoping and praying that the hair loss will subside once I've been gluten free for a while. I've been on the diet for just a week. Has anyone else ever had this problem?

Hi and Welcome!

Yes, you're right. Hair loss is a common symptom of poor absorption due to Celiac. Many people has had hair loss by the clumps. As you body starts to regulate itself and gluten is removed from your system, hair loss will subside. It may take some time though.

After your intestines heal, Biotin can be helpful with hair growth.

Yeah!!! What a good time to be alive REAL Chex-Mix is on the way.

So I was diagnosed with crohns a short while back, but a recent test showed i dont have it. In any case I want to be tested for Celiac because it would not require the awful drugs i take now and i fit every symtom. My question is...I have been on Methotrexate for about 2 months and I wonder if that will give a false neg. result. I am going through the same doc so I would assume he wouldnt have me get the test for no reason, but just wanted your takes. Also, I didnt eat any gluten yesterday, but have up until then and did today. Test is tomorrow. Thanks.

Welcome to this site!

I am not sure whether certain drugs could effect the Celiac Panel Blood Test. I do know that the blood test is not 100% reliable. The blood test can rule Celiac in, but it cann't rule it out.

Continue to eat gluten up until your testing is satisfied, it may alter your results if you are gluten free. Here are the tests that you doctor should order:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level

I hope you find your answers.

I just downloaded Mozilla cuz everyone says it's better but I cannot see threads with it! Does anyone else have problems with this browser? It might just be a viewing option i have selected or not selected but it's frustrating!

I'm trying not to use safari, as i think it gives my Mac problems but i cannot not have my celiac.com!!!

Any ideas??

Look up to the top right of this site. You will find an "Options" box. Click on it and then click on to "Standard". That may fix the problem.

I have a sprained arm. I'd like to take Aleve, but I don't want it to upset my stomach. The company says it's gluten-free.

Thanks.

Yes it is gluten free. Feel better.

Have a wonderful trip.

Hi,

I wonder if anyone can help or advise? I am newly diagnosed and am in the process of preparing my kitchen and doing my red and green stickering I have a bag of "questionables" which I am working through (non-contaminated).

Can anyone tell me if yeast extract is ok for a Coeliac (with no other intolerances as far as they know..). The more I try to research the more confused I get about this but then I have digested a lot of info in the last 2 days...Phew! I understand yeast extract contains barley so that probably makes it a No but I am muddled as I then see Coeliac friendly recipes with yeast as an ingredient and references to eating Marmite.

Can anyone help? I am confused a bit by spice mixes etc containing yeast extract and the obvious ones like bovril and marmite. Am I confused as this is a Codex Alimentarius thing and I am in the UK...? Is it a GREEN or a RED...?

Thanks,

Bytey

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I can understand your confusion. MSG can hide in the listed form of yeast extract. In the US MSG is not gluten related. Not so good for you, but not gluten related. Some here do react to the MSG, but again, not gluten related.

I do know that some here react to the Codex Index for gluten free products.

I will defer my answer to those who live in the UK.

AND, were glad that you have joined us. This is a great place!

PS - great idea for the green and red stickers. I did that. It's great for a shared household. And serves as a warning to those who double dip into the peanut better jar.

Many people find it easy to criticize that which they don't understand. Unfortunately, that's human nature.

Restaurant dining can be frustrating especially when you're looking into the drippy creamy sauce of the plate of your dinner partner and drooling into your own sauceless meal. Or getting tired with the same old entree that you order time after time because you know its safe.

Dinner at friends homes is equally frustrating and embarrising at times. You feel that you're being critiical in examining the cooking techniques of your host. You don't eat what is being served not because you don't like it, but because you don't know if it's safe. Again, an insult to the well meaning host. And you just do the best you can, with a smile. Yeah, it sucks sometimes.

But I have CAKE. Pamela's Chocolate Cake Mix is better than any gourmet, expensive cake around. Most gluten products have been replaced with "almost as good" products. In the three years since I was diagnosed, GREAT, GREAT inroads have been made and I look forward to the next three.

I really can't complain.

Something here may be helpful:

Open Original Shared Link

Feel better.

I recently purchased a bottle of rice wine vinegar thinking that it would be safe because it is vinegar made from rice. However, after reading the label (duh! Should have done that before I got to the checkout!) I see that the vinegar is made from glutenous rice. Can anyone tell me if this is a problem or not. Can't seem to find any info on the web about it. Thanks for your help.

Just to add to the never ending confusion in the life of a Celiac. Glutenous rice is gluten free and in turn the vinegar is gluten free. Glutenous rice is called that because it's sticky.

Hi Lisa and Welcome!

There are many Lisa's here and I'm one of them. I have been hanging around here since 2005. My how time flies....

Welcome to the Forum!

It would be interesting to know what type of blood tests you had that flagged interest in your doctors pursuing other tests. If you have them, can you post it.

This site is a great source of information and the recipe section is wonderful. The site as a whole is the best Celiac/Gluten Intolerance information around. Take a walk around.

Here is a listing of companies who will clearly list all forms of gluten. It makes shopping so much easier.

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Hello. After years of blaming the way i felt on a lousy diet, and im sure that was partly to blame, i finally pushed to see an allergist after i cleaned up my diet but still had all the same issues. As im sure you guessed The doc was all about testing for celiac, thankfully. I had never heard of it. When asking my PCP he always said lose the dairy its prob lactose. When the Blood test came back positive i wasn't thrilled but i was encouraged that at least it was an answer and i could fix it myself. Now my issue is that after doing some time at the library and lots of web time i know that the only way to be sure is the biopsy. My delema is that just to get into the gastroenterologist there is a 4 month wait. And who knows how much longer after that to actually have it done.

My question is do i realy want to put meslef through 4-6 months more of all this and put my life basicly on hold to have this test. i know if i change my diet there will be no point in having it at all. I know that no doctor would do this without seeing me first. but to wait that long for a 5 min appointment so he can read my file and say "yup lets do it" seems silly. As many of you im sure have been in this place i ask...What have you or would you do?

You said that you have a positive blood test for Celiac. That IS a diagnosis. Blood tests and Biopsies can rule Celiac in but it can't fule it out and both can have false negatives. (make sense?). In your case an endoscopy would be to determine the extent of the damage. But you have Celiac Disease.

If I were in your shoes, I would begin the diet immediately.

Unfortunately when I tried to call today, they are closed for the holiday...sooo I will try again Monday, unless someone has some info for me. Seems that every place I called today was closed for the holiday...bummer!!

-Jessica

Don't know Jessica, but Patti posted this today.

Words to watch out for in shampoos and stuff....

Avena Sativa (Oat) Kernel Flour

Cyclodextrin

Dextrin

Dextrin Palmitate

Hydrolyzed Malt Extract

Hydrolyzed Oat Flour

Hydrolyzed Vegetable Protein

Hydrolyzed Wheat Flour

Hydrolyzed Wheat Gluten

Hydrolyzed Wheat Protein

Hydrolyzed Wheat Protein/PVP Crosspolymer

Hydrolyzed Wheat Starch

Malt Extract

Maltodextrin

Secale Cereale (Rye) Seed Flour

Sodium C8-16 Isoalkylsuccinyl Wheat Protein Sulfonate

Triticum Vulgare (Wheat) Germ Extract

Triticum Vulgare (Wheat) Germ Oil

Triticum Vulgare (Wheat) Gluten

Triticum Vulgare (Wheat) Starch

Wheat Amino Acids

Wheat Germ Glycerides

Wheat Germamidopropalkonium Chloride

Wheat Protein

Wheatgermamidopropyl Ethyldimonium Ethosulfate

Yeast Extract

___________________

Do you know of any support groups in San Diego, CA? It sounds like you have done your research, and maybe you would know of a site I could go on to find a group in my area.

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Maybe this will be a start If these don't work for you, let us know and we can "hook you up".

Hi all,

I've been poking around this wonderful website for a couple days and left a post about a potty training regression my four year old is going through under the doctor thread, but essentially I am really new to all this. I am the mother of a 4 year old girl who needs to be gluten free, a husband who is gluten-free also, and now I am begining to suspect that i also nbeed to stay off the gluten. The dilema of the day is; Will gluten free beer be ok to marinate a ham in for Easter Dinner?

I haven't looked at the product myself and I am a bit confused how fermentation is bad in some situations but not in others. I assume this beer is fermented, right. Wouldn't it need to be to be an alcoholic bev?

I love this site, I am just begining to realize the severity of my daughters allergy. We have gluten-free since about december. Something is bothering her and after reading all your posts I am discovering that environment is as important as what is ingested. Thanks for the great site!

Kristan

Aside from never hearing about merinating a Ham, gluten free beer such as Red Bridge is fine.

Given Imaging Announces New Mayo Clinic Study Concludes Celiac Disease May Be More Severe Than Symptoms Indicate for Some Patients

PillCam® SB Visualizes Disease Severity, Guides Treatment and Provides Better Sensitivity for the Detection of Villus Atrophy

March 03, 2008: 08:30 AM EST

Given Imaging Ltd. (NASDAQ: GIVN) today announced that a study by researchers at the Mayo Clinic reported that capsule endoscopy is a more effective tool to diagnose celiac disease and detect damage throughout the small intestine than upper endoscopy. Researchers also found that celiac affects a highly variable portion of the small intestine and that the severity of symptoms did not correlate to the severity of intestinal damage.

The Mayo study utilizing Given Imaging's PillCam SB was led by Mayo Clinic gastroenterologist Joseph Murray, M.D. and appears in this month's issue of Clinical Gastroenterology and Hepatology.

"We're pleased that this study confirms that PillCam SB, which has the advantage of visualizing the entire small bowel, can help clinicians diagnose and monitor the severity of celiac disease regardless of their patient's symptoms," said Homi Shamir, CEO of Given Imaging.

According to the Mayo Clinic, this study, which is the first of its kind, used capsule endoscopy to view intestinal damage in 38 patients with untreated, biopsy-proven celiac disease. Indications for clinical evaluation were malabsorption syndrome and iron deficiency anemia. Ninety-two percent had visible damage detected by capsule endoscopy while upper endoscopy only detected visible damage in 55% of the patients. Neither capsule endoscopy nor upper GI series yielded false positives.

This study also indicated that a high proportion of adults may not heal their intestinal abnormalities even after a year or more on a gluten-free diet. Biopsy specimens of the proximal small bowel alone may not reflect the healing that has occurred distally in response to a gluten-free diet. Capsule endoscopy showed that healing in the small intestine occurred from the distal to the proximal direction with most residual changes remaining in the duodenum. Capsule endoscopy may play a role in monitoring the healing process of a patient on a gluten-free diet.

Given Imaging's PillCam SB video capsule was the first capsule endoscope on the market designed specifically to help doctors see inside all 30-feet of the small bowel (small intestine) to diagnose disorders such as Crohn's disease, Celiac disease, benign and cancerous tumors, ulcerative colitis as well as others disorders.

The smooth plastic capsule contains a miniature video camera and is equipped with a light source on one end, batteries, a radio transmitter and antenna. After it is swallowed, the PillCam SB capsule transmits approximately 50,000 images over the course of an 8-hour period (about 2 images per second) to a data recording device attached to a belt worn around the patient's waist. The small bowel images are then downloaded into a Given