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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Fibromyalgia Or Celiac?

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I checked gelatin ingredients, too. One kind is made from hooves, skin, and connective tissue, the other kind is made from seaweed. All I can think of is that maybe he was referring to what Tiffany said about non-stick coatings. Ask your pharmacist to explain. Mine is very good about not giving me something I can't have, and he says gelcaps are just fine. One thing is for sure, we have to make sure to communicate with our pharmacists, too.

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there's a third kind of geletin, made from fish bones (so as to be kosher), too. but none of them contain gluten. (ever made stock from beef bones or chicken bones, and had it gel in the fridge? that is gelatin - it is a substance that dissolves out of the bone at high temperature.

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My fibromyalgia has settled into the area from my shoulders to my fingers

This happened to my hubby!! We were already gluten-free, so I started hunting for secondary food allergies, and BINGO!! He's allergic to pork! :o

He cleared up within a week after we went pork free!

Connie

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I also have bone, muscle, ligament. join, pain , pain in my right foot, especially, also right shoulder, aching, up and down arms. Tingling in hands and feet, burning across upper ab. Abdominal stuff seems to get worse at the same time as body aches. I have not been diagnosed with fibromyalgia, however my Dr. did suggest that I see a rhematologist at one point. I didn't take him up on it. Was already exploring celiac. Have been gluten-free almost 8 weeks. I have not been diagnosed. Yesterday was a good day. Today is a bad one. Yesterday I ate some veg. soup that I had frozen before I went gluten-free. I didn't remember that that would have barley in it, not very much, but not good. Also this mornng I ate a freshly steamed beet/ I haven't had beets for awhile. Had visited a Farmer's Market this week and got lots of nice fresh veggies. I hope the problem is the barley and not the beet. Also I changed brands of glucosamine-chondroitin to one from Hy Vee. It has added ingredients including various kinds of cellulose listed, The word cellulose has various long words connected with it in the list. I guess I need to find a different sorce of glucosamine. It's good to share experiences with others. Ruth S.

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Guest barbara3675

Have you people notice that there have been over three hundered people that have read this thread? There definitely is some big interest in the fibromyalgia/gluten intolerance connection, I would say. It is just confirming my suspicions more and more all the time. I am anxious for my results to come back from Enterolab to see what they have to say as I had a negative blood test while on gluten/now eating gluten-free for about seven weeks. I do so appreciate all the information that I have gotten from this message board, I check it several times a day. Barbara

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lol, since it's based on hits, not individual people, I think I'm responsible for somewhere around 5% of that number. it is an interesting topic, however, and there does need to be more research done on the subject.

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Guest barbara3675

Red345.........I am quite sure this is fibromyalgia as I saw a rhumatologist and all the other things were ruled out and the pain has settled into ONLY my arms at this time, no pain anywhere else. It is totally muscle, ligament, tendon pain and not the bones or joints and althought I am aware of it during the day, I can totally put it in the background, it really only bothers me when I lie down in the bed and it so hurts when I wake up in the morning. I hot shower and getting to moving around makes it better. This is typical fibromyalgia. I had hoped the there would be improvement with the gluten-free diet, maybe it is helping by keeping it only to my arms, who knows. As far as the Enterlab goes, I can't really say. I sent them my order with my charge card number and they swiftly sent me the box with everything needed to collect the stool specimen, the swabs to collect the gene samples and complete instructions to do the testing and for sending it back to them. I have done all of this. I had to use another method of sending it back to them other than the one they prefer, and I did it with their approval. I live in a pretty remote area where their approved carrier doesn't go....it was DLH or something like that I had never heard of, I ended up using FedEx, it has to go overnight. I bought the most comprehensive one. I am still waiting for the results which I understand come in the form of an email. I am hoping that they are detailed and easy to understand. I will let you know when they come. Barbara

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Guest barbara3675

The results are in and I have a definite gluten sensitivity and also a sensitivity to cow's milk. Their suggestion is that I have no gluten or cow's milk in my diet at all or I will surely develop celiac disease. I have printed off this information for my doctor and will present it to him when I next visit. If he is unaccepting of the information, then I will search for a more understanding doctor. Enterolab got back to me with results in less than two weeks. I consider them to be very professional and thorough and their reporting seems to be very skilled. Red345, if you would like to see a copy of the report, I could send you one, I would need your mailing address as I don't know how to scan something or don't have a fax. I guess I could type it all into this format for you if you would want me to, you can let me know. Barbara

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Hi,

I am being unoffically tested for fibromayalgia by my chiropractor which involves testing for tender trigger points when in alignment. (my body does not like cars...another story. )There are many foods that contribute to inflammation. (beef,chocolate,caffine...) Are you near any holistic practioners. Acupuncturists, natropaths,? They often listen better than traditional MD.

I have read online that fibromyalgia is often connected with Celiac. Know what chronic pain is like. I am the worst at cheating at the ant-inflammation diet which also includes staying away from gluten and processed sugar and many favorite foods. Thanks for your story it was a wake up call.

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red 345

Please read my earlier post,

after 4 years of a Fibro diagnosis and 2 years of a celiac diagnosis they sent my mum to a cardio specialist as she was getting a whooping cough and pain down her arm, he was alarmed by the fact that my mother was in so much pain however didnt display any of the normal tendencies that were expected after the routine excercises.

I thought about sending my mum to a chiropractor, as i thought it may be muscular.

I would say if any celiac sufferer felt the need to see a cardio specialist then ask them to concentrate on blood pressure! in particular ask about a condition called vasculitis especially nervous sysem vasculitis.

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I was wondering how practitioners check your metabolism!

Is there a test to see if you have a high or low metabolism and what are the statistics of your rate of metabolism changing throughout your life... and what are the reasons for that change?

Up untill i was about 13 i had a very high metobilsm i could eat whatever i wanted and not put on a pound and was very hyporactive, i turned 16 and my metabolism slowed right down i got very tired easily and my weight went up and down. I am a type "o" negative.

I pretty much stayed on the same foods, and i wonder if it was that i was in the era that we started to use microwaves or companies used different additives in there foodstufs or was my body just changing with age, maybey a pubestent downfall.

And if your metabolism can switch from high to low ( whicj is the obvious one with age, can it switch from low to high?

I still feel that fibro and celiac is a very grey area for misdiagnosis. if the diagnosis was so easy as say "super size me" then we would all be laughing!

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All I can say is that I was told I had F/M and was at the point of daily pain meds. After being gluten-free since Feb04 no more pain meds and I had never heard there could be a link . I dont think I ever had F/M. Now the only time I hurt like b4 is if I eat the wrong thing.

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:unsure: Aloha,

To all those who were dx w/ fibromyalgia before the dx of celiac.....

How long did it take once you were gluten-free for the body pain to go away?

I am going on my 7th week gluten-free and am still in alot of pain!!! :(

Need some encouragement! Thank You Suzanne

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Guest barbara3675

Regarding your question about how long it takes before the fibro pain goes away, I think it depends on how much pain you have and how bad your gluten intolerance was. I have been on the gluten-free diet for about 9 weeks now and cf for about 2 since being diagnosed by Enterolab. I have some pain, but not nearly what it was before. I have been on Topomax (for migraines)and I have decided to cut it in half and see what will happen. It is VERY expensive and I would like to start taking less medicine. I hope we can keep this fibro/celiac thread alive so we can keep checking on each other. It obviously is interesting to a lot of people. I take magnesium with malic acid for my fibro and that helps a lot, you might want to consider that. Often people with migraines and fibro are seriously short in that department and that helped me more than anything before I went gluten-free. I also take Mobic, a strong anti-inflammitory---would like to cut back on that sometime too. Barbara

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I was diagnosed with Fibromyalgia in 2000. Didn't find out about Celiac until 2005 and I suffered with pain and bowel issues for years before that. I went gluten free in 2005 and felt much better, not perfect but better. I was in so much pain that I had already chosen to turn to some serious pain meds. I started eating gluten again after a year to test the theory and it didn't seem to both me again for about another year.

Now I am gluten free, lactose free and off the pain meds. I am a firm believer that I never had FMS to begin with, I have Celiac. My blood test came back negative in 2005 and I never got a biopsy but as far as I'm concerned if the gluten free diet is working and I react as bad as I do, it's Celiac.

I had pain in every muscle of my body, the worst was arms and legs. I had restless legs syndrome, chronic fatigue, migraines and pretty much couldn't handle any activity for too long. I have now officially been gluten free completely for 2 weeks with no cross contamination or slip ups and am now also completely vegan. I feel wonderful. The last to go was the leg pain and I haven't had to take any pain killers of any sort for 3 days and this is after 8 years of being drugged up on something.

Is there a connection? Yes. I think the connection is that most doctors don't know enough about everything and they create these mysterious syndromes and diseases just to have a diagnosis without all the work. The reason I never stopped searching for an answer was that I was told FMS is not progressive, it shouldn't get worse and I was getting worse day by day. I knew something else was wrong.

I hope more people find the answers I have because so many are suffering needlessly.

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How interesting that you should reserrect this thread. I was a frequent poster on it as Guest barbara....but now am back on as sixtytwo. That was in 2004 and now it is 2009, lots of time gone by. I have recently been having some headache trouble which I thought was migraines and really it ended up being "nerve headaches" according to the doc. He thinks the fibro has settled into my shoulders and prescribed Lyrica. I actually am better. I still take Mobic and am cutting back severely on Topomax. I am gluten intolerant and eat gluten free. This fibromyalgia/celiac thing is certainly a factor and doctors, for the most part, just do not get it....still. I think my fibro would be so much worse if I did not eat gluten-free. I am convinced. Barbara

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I was meant to find this site , to be sure! I am pretty convinced that my fibromyalgia condition is related to gluten I had a negative blood test also however I had been off gluten for about three months and resumed gluten two weeks prior to the test , I read that you have to resume gluten for about five months in order to get an accurate diagnosis , having said that I resumed a gluten free diet for another four months and found that my flares were not as bad plus my stomach issues were better, however I broke the diet again and resumed gluten , WHAT PUZZLES ME THOUGH is that it took about a month before I reacted and came down with the worst flare ever , the pain has been incredible , so now I am confused , can it still be celiac and take this long to react, I suspect that's my problem but I am not sure , I know I also react to fructose which I had ( onions and dates on top of the bread ) all I know is that I would gladly go without gluten if I knew it would keep me from having a flare like I just went through , I actually cried all week , still it's a huge commitment to make when one is guessing I already have so many food allergies that my diet is severely limited , does anyone know if the reaction can take a while to surface after resuming gluten , I would be thankful for any insights anyone can provide.

Miche

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I was meant to find this site , to be sure! I am pretty convinced that my fibromyalgia condition is related to gluten I had a negative blood test also however I had been off gluten for about three months and resumed gluten two weeks prior to the test , I read that you have to resume gluten for about five months in order to get an accurate diagnosis , having said that I resumed a gluten free diet for another four months and found that my flares were not as bad plus my stomach issues were better, however I broke the diet again and resumed gluten , WHAT PUZZLES ME THOUGH is that it took about a month before I reacted and came down with the worst flare ever , the pain has been incredible , so now I am confused , can it still be celiac and take this long to react, I suspect that's my problem but I am not sure , I know I also react to fructose which I had ( onions and dates on top of the bread ) all I know is that I would gladly go without gluten if I knew it would keep me from having a flare like I just went through , I actually cried all week , still it's a huge commitment to make when one is guessing I already have so many food allergies that my diet is severely limited , does anyone know if the reaction can take a while to surface after resuming gluten , I would be thankful for any insights anyone can provide.

Miche

Hi Miche,

Welcome!!

This is a VERY old thread....you might want to start a new thread so that you get more attention and more answers...?

I know that I have both fibro and celiac disease, and if I eat anything with gluten I have symptoms about 12 - 36(max) hours later. Definitely not anything like a month. But everyone is different!

So I don't know what to tell you.....except that fibro is somehow linked to autoimmune diseases, that's for sure. It shows up most often in people who have various autoimmune disorders. But the medical profession still doesn't understand that much about fibro.

I've been gluten free for a year now. Most of my classic celiac disease symptoms are gone: the mouth sores, the diarrhea, the migraine headaches, the stomach pains. But I have several other autoimmune diseases plus fibro: I have a lot of symptoms that are NOT gone. In fact, I'm currently in a lupus flare condition, which is not a good thing at all. Vertigo, nausea, double vision, photosensitivity, yuck. I'm still hoping that my other conditions will go into remission; lots of people on this board have had miraculous recoveries, even if it took a while!

In any case, the best thing you can do is listen to your body. What is it telling you? Do you feel better when you are gluten free? Then don't eat gluten! You don't need a doctor's diagnosis to figure out if you feel better gluten free or not....thank goodness!! :)

Good luck to you!

JoAnn

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Good Morning Miche-

I was recently diagnosed wtih Fibromyalgia - my stiff/achy/pain, severe fatigue, fogginess, heat intolerance and light sensitivity all became worse these past 8 months that I've been gluten-free.

It is my belief that long undiagnosed Celiac Disease caused my fibro symptoms. At diagnosis I was 43 and had had more mild versions of the fibro symptoms along with consistent unexplained weight gain, severe bloating, constipation and stomach discomfort for over 25 years! I'd reported the mild and worsening versions of these symptoms to a minimum of 8 primary doctors of the years -- they would run general blood work and thyroid hormone tests each time and each time I came up normal except for anemic for which they prescribe iron supplements and send me on my way.

Fast forward to Winter '07-'08 - my symptoms were quite bad so I insisted my new primary doctor continue to run tests until they figured out what was wrong -- it was about this time I was certain myself that it was serious and could not be "all in my head" -- from then on when ask by a doctor if I have depression I was able to respond that I am NEVER depressed until I feel sick for long periods at a time (6 weeks or more) and then I become depressed -- I have never felt depressed first and then become sick!

I kept on the doctors for another year and a half before they finally ran a tTG IgA on me which was marginally positive and led to me Celiac Diagnosis. As many on this forum can attest primary physicians NEED to be educated about the broad spectrum of Celiac patients -- that antibody test was the only test besides iron that wasn't normal in 50 blood tests over that last year -- I firmly believe no doctor even thought about it because I was overweight with c, instead of underweight with d!!!

My digestive symptoms have improved these past eight months and I am slowly losing weight (about 20 pounds now) during a period that I have been more inactive than any other period in my life!

As for Fibro-Celiac connection - I firmly believe there is a connection. Whether my fibro will improve with long term gluten-free living is anyone's guess.

Currently I am more interested in the neurotransmitter connection in Fibromyalgia. For me it makes sense that if ALL of my vitamins and minerals were very low upon dx, then it is not a leap to think that my amino acids were not absorbing properly as well. The eight essential amino acids we get from eating protein are so very important to many systems/processes in our bodies. I'll be supplementing with some targeted amino acids soon -- just waiting for a response back from celiac doctor to make sure it is not dangerous to take these supplements.

Guess this was a very long way of saying what JoAnn said very well -

"In any case, the best thing you can do is listen to your body. What is it telling you? Do you feel better when you are gluten free? Then don't eat gluten! You don't need a doctor's diagnosis to figure out if you feel better gluten free or not....thank goodness!!"

Good Luck!

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Hi Miche,

Welcome!!

This is a VERY old thread....you might want to start a new thread so that you get more attention and more answers...?

I know that I have both fibro and celiac disease, and if I eat anything with gluten I have symptoms about 12 - 36(max) hours later. Definitely not anything like a month. But everyone is different!

So I don't know what to tell you.....except that fibro is somehow linked to autoimmune diseases, that's for sure. It shows up most often in people who have various autoimmune disorders. But the medical profession still doesn't understand that much about fibro.

I've been gluten free for a year now. Most of my classic celiac disease symptoms are gone: the mouth sores, the diarrhea, the migraine headaches, the stomach pains. But I have several other autoimmune diseases plus fibro: I have a lot of symptoms that are NOT gone. In fact, I'm currently in a lupus flare condition, which is not a good thing at all. Vertigo, nausea, double vision, photosensitivity, yuck. I'm still hoping that my other conditions will go into remission; lots of people on this board have had miraculous recoveries, even if it took a while!

In any case, the best thing you can do is listen to your body. What is it telling you? Do you feel better when you are gluten free? Then don't eat gluten! You don't need a doctor's diagnosis to figure out if you feel better gluten free or not....thank goodness!! :)

Good luck to you!

JoAnn

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Thank you both for taking the time to answer my concerns, I will resume a gluten free diet , there has to be a connection , I also have a very low vitamin d level and autoimmune thyroid , I cannot find the newsletter I received yesterday and am quite upset that I may have deleted it , it was from the FM/CFS /ME association and it stated that a new blood test is in the making that actually shows antibodies in people with fibro and may well prove it's an autoimmune problem , it should be approved by the FDA and on the market within the next two years , wish I could remember all the details , maybe I will google it in the hope of finding it, it stated your doctor would not be aware of this study as yet , anyhow , more proof that it's not in our heads !

thank's again ,

Miche

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Thanks Miche---that would be great news for everyone with Fibromyalgia to have an antibody test -- so very difficult to be diagnosed with something that can't be proven.

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I am interested in this connection. I was dx (diagnosed) with fibromyalgia and celiac around the same time. I've always been basically sick and am in my 30s. I went gluten-free and have been for about over 1 year. I took a supplement that basically made my pain go away (was expensive and had gluten in it) before I was dx with celiac. Several months ago I found out that my vitamin D level was very low. I've been taking a supplement and my pain has decreased but not gone away. I want to get the rest of my levels checked because I believe that I may have some other deficiency that is causing this pain. Definately fascinating!

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    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
    Under the deal, personalized digital media company Catalina will be joining forces with Label Insight. Catalina uses consumer purchases data to target shoppers on a personal base, while Label Insight works with major companies like Kellogg, Betty Crocker, and Pepsi to provide insight on food label data to government, retailers, manufacturers and app developers.
    "Brands with very specific product benefits, gluten-free for example, require precise targeting to efficiently reach and convert their desired shoppers,” says Todd Morris, President of Catalina's Go-to-Market organization, adding that “Catalina offers the only purchase-based targeting solution with this capability.” 
    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.
    Source:
    fdfworld.com

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    • Hello, I am new to this forum, but not new to celiac disease.  I've had celiac my entire life, but I just found out I had it about 9 months ago.  I've had symptoms my entire life.  My husband and 2 children eat gluten, so there's lots of accidental glutening going on as much as I try to prevent it, and they refuse to go gluten-free.  I don't want to get into an argument with anyone on here about that, this is a personal family choice, so let's leave this at that.  I'm extremely sensitive to gluten.  One tiny breadcrumb will give me a bad rash and fever among other things (I have lots of symptoms when it comes to gluten).  My biggest problem is my stomach, I'm constantly having stomach pain/problems even though I eat gluten-free/gluten-free foods.  I suffer daily from celiac pain even though I eat gluten-free and it makes me depressed.  I've been eating gluten-free for 9 months now and I thought I would be done with this now.  I eat a lot of foods like soups and pastas and sometimes breads that are considered gluten-free (I always go for certified if I can find it) but I eat other things like chicken and veggies and fruits too.  I guess I thought my symptoms would be gone by now.  I've had bad reactions to gluten-free foods before and even my small intestine has hurt and I've had black diarrhea from eating said food so I'm always super careful.  I'm just having a really hard time coping with all of this.  My entire life it was never this bad.  About 4 years ago I got really sick and I started throwing up blood and I gained 10lbs from bloating and I looked like I was pregnant.  After that I just kept losing weight until I got down to 96lbs.  Once I started eating gluten-free I gained a lot of weight and now I'm back to a normal weight.  I guess my main problem here is I'm depressed a lot of the time because I'm in pain so much still even though I'm eating gluten-free and I don't understand why.  I'm also depressed that the things I can eat is so tiny.  I live in Hawai'i and the options here suck.  Idk if it's better elsewhere but I feel like everything I loved to eat is gone and all I'm left with is just food that tastes bad and I'm having a really hard time getting over that.  It's even harder watching my husband and 2 kids eat delicious things that I can't even eat and it hurts me that I can't eat it too.  Idk how to get over that, or if I will ever get over that.  I would never, ever eat gluten, I'm way too scared to because when I was eating it I was super super sick, plus I know it causes damage to my small intestine so that's just not something I want to do.  I guess I'm just having a hard time coping.  Idk if I just need more time to get used to eating gluten-free or if it's something else I need help with.  Any advice on how to cope would be much appreciated.
    • I do consider it very seriously, that's how I got to this site years ago. The wheat vs barley reactions puzzled me though based on what I read when I first experienced symptoms. But what you said about immune fluctuations and form/varieties/prep makes sense. I was planning to ask the doc to retest after being back on wheat/gluten but my insurance changed so I'm going clean and eliminating gluten again, but without being strict about cross-contamination like I was the first time around. Hopefully it will be the same improvement as the first time and I'll know what my boundaries are.
    • My son’s GI said his high antibody levels with a positive genetic test were sufficient for the formal celiac diagnosis without a biopsy. We went that route and were happy to be able to immediately go gluten free. We noticed such improvement so quickly. I think you need to get the blood test (full panel) and then go from there with genetic testing versus biopsy. I don’t know what a biopsy costs but the genetic testing was quite expensive. I’m so happy you are getting your kiddos tested!! I think you are making a very responsible choice and being a loving parent. I hope your husband can understand and get on board someday.
    • I expected a reply like this so I feel I should add: I do not take gluten intolerance or celiac disease lightly. It took two years to get a diagnosis for a myriad of gut symptoms, but that 'diagnosis' was more of a agreement to disagree on a cause and a decision to slowly add foods to my rice/chicken/applesauce diet until I regained a semblance of normal.  Why play with it now? Years later, after unknowingly eating things I shouldn't have and then realizing I didn't react as expected, I wanted to see what I truly had to avoid and hoped that some of the past eliminations were desperate, unnecessary guesses. So here I am.  I can eat a slice of white bread when I'm in the middle of nowhere with no Udi's in sight, but not a cookie that contains malted barley. Maybe some of my joint pain or chronic sinus inflammation would improve if I avoided that occasional slice of bread altogether, or maybe that pain is solely due to the injuries and the sinus inflammation is just a continuation of the respiratory problems I was born with. That's what I'm trying to figure out. 
    • Hi Vonney, You may want to have the full celiac panel run again in a few months.  The full panel includes DGP IGA and DGP IGG also. You should keep eating gluten until all testing is completed.  You may have damage in the gut that is not showing up in the first 5 feet that the endoscopy can reach.  But, since you had a positive antibody test it makes sense to follow up with repeat testing later on.  If your antibodies are higher in a few months that is a good indicator something is going on.  It may be you had testing done before much gut damage was present.   Gallbladder issues are not unusual in celiac sufferers.
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