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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Celiac Work-up
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14 posts in this topic

Hello,

I have just registered with this board. I am currently being "worked-up" for Celiac Sprue after a positve antibody test. The result of this test was a total suprise tome and my doctor since I am not of the "typical" group that usually gets celiac disease, in that I am East Indian. I have had a problem with anemia since I was in my teens and have been on oral iron therapy for decades without much success (I'm 38 now). I carry Thalassemia Minor trait, so it was not uncomman for me to be anemic. My doctor decided to do the test just for the heck of it because we were not achieving any results from the oral iron (which I was taking double doses of). I have since been referred to a specialist and last week had an endoscopy and a colonoscopy. I have not had a follow visit yet, so do not know the biopsy results, though I was advised to start a gluten-free diet. I also have Haishimoto's Thyroiditis and take Synthroid. In the last 3 months I have had a tremendous pain on my right hip and shoulder, especially at night. My legs feel like lead when I am lying down. I don't have the same range in motion that I used to have on that side. I have lost my sense of taste. Everthing tastes different now. My father has Rheumatoid arthritis and I am very worried that I have that also. All my aliments are auto-immune related and I'm just waiting for something else to go wrong with me. I was born in England and I have had a diet of biscuits and tea for the better part of 38 years. Sometimes, I don't even eat food but I must have my biscuits (cookies) and tea. I can't function with them. How does one deal with this?

I am receivng Iron intraveneously 3 times a week for 7 weeks. My teeth are another story in itself. I used a flouride treatment daily. I have terrible tooth decay. I am extremely weak and have no muscle mass. I am clumsy and can barely hold a pair of kitchen tongs without pain in my hands and wrists - I am a complete MESS! My head does not feel that it is attached to body!

Any advise on dealing with this is most appreciated. Please feel free to contact me via email at: ss214@cornell.edu

Thank you for your time,

SharonP

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Hi Sharon,

Welcome! It sounds like you have so many different things going on that it's hard to know what symptoms a gluten-free diet might help with and what are caused by other things, but I do know of people who have found that their joint pain lessened on the gluten-free diet, and my own experience was that things I had always thought were just the way I was suddenly got lots better when I stopped eating gluten. So you may have some big improvements to look forward to.

As far as your tea and biscuits, there are gluten-free cookies available from several brands. They probably won't be the same as what you're used to, but give them a try. I like Pamela's best myself, but Mi-Del makes some (in some threads you'll see that some people are wondering if Mi-Del might be giving them problems, but I've been fine with it) and I've seen other brands different places. Look around in your local health food store and also online. You may be surprised by all the options you have.

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I would definately say that a gluten-free diet can help. Most of the symptoms you complain of are listed at some point as a complication of celiac disease. If your blood work showed anything that indicated a chance, and you've already had your colonoscopy and endcoscopy. I would start the gluten-free diet if you can. How long do you have to wait for the reults? if it's really soon, you could wait to see the Dr.

Much success to you, sounds like you are miserable.!

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Sharon,

I also suffered from anemia that was not being helped by oral supplements (also a double, at times triple dose). I'm also 38. Finally, after years of anemia and "weird" ailments... joint pain, pain in my arms, hips, legs (diagnosed as fibromyalgia) numbness in my arms and hands (I dropped everything, lost my grip easily) and eventually my legs, dizziness, etc.... I was diagnosed with celiac disease.

My blood tests were negative... my biopsy was positive.

I just celebrated my 1-year anniversary gluten-free... and I feel great! All the symptoms listed above are gone... or much better! I also had gastro symptoms but never thought to mention them to my doctor for all these years... the gastro problems were managable and "what I was used to." Now that I know how it feels to be normal, I realize I did have some "classic" celiac disease symptoms.

By the way...Nothing, except the anemia, was attributed to celiac disease by my doctors... but I'm better now!

Best of luck to you! It sounds like you may have found your cure.

Ruth

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Hi Laura,

Thank you for your welcome. I really appreciate that. Part of me just doesn't want to accept that I have something else wrong with me. I hardly eat bread, I hate all cereals, I don't much like food-period, so I know my diet is a contributing factor to my ails, as is genetics. Thanks for the info in the cookies, I'll definitely ask my supermarket to point me in the right direction. I also know that stress compounds everything and maybe I should learn to "chill out".

My family is going thru another crisis, in that my niece (my brother's daughter') is the first reported case of Mad Cow Disease in the US. Her story has been in the news media alot. My brother relys in me do get as much publicity about this disease and her tremdenous suffering, and I think, I am just am pretty much overwhelmed by alot of things. My father is another, who is having a really hard time with Rhematoid Arthritis. Sunday marked the fourth year anniversary of my sister's death who died from Non-Hodgkin's Lymphoma, another autoimmune disease.

Phew, that was a mouthful. I am pleased I came across this website.

Thanks for taking the time to respond to my post,

Sharon

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Hi Laura,

Thank you for responding to my post. Yes I am miserable..... Although, none of my ailments are life-threatening they do take a toll, especially when you think you are becoming a hypocondriac(sp) and wonder if all my symptoms are in my head. You are afraid of reporting all your aches, pains and concerns to your Dr b/c he may just think your nuts. For 10 years, I ate Halls cough drops, craved them like someone would crave drugs. All the doctors I told just laughed and told me it was a weired habit to have but I was serious when I told them my concern. Not one of them told me that I was probably due to my anemia and this type of behaviour is called PICA. When I first went to my haematologist a couple of months back, he was the first person to ask me if I ate anything wierd like ice or dirt. I was releaved to know that my cravings for Halls was beyond my control and now a couple of months later, I can't stand to even smell someone eating anything menthol.

Yesterday, my stomach was churning all day. I don't know what I ate, I was so uncomfortable. I used to take Immodium everyday as a prophylaxis b/c I knew my stomach would act up. Over the years, I have had, upper GI's, lower GI's and Small Bowel series tests, nothing ever showed. I was thought to have IBS or Ulcrative Colitis (UC runs prevalent in my family as well). I just find it hard to accept that gluten could have been the culprit all these years, but my symptoms were sporadic, in that it would come and go.

I guess, I am going to have to make some adjustments one way or another. I;m sure my husband is going to sick and tired of me and my complaints sooner or later - sigh....

Take care,

Sharon

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Dear Ruth,

I see you are a newbie too - welcome to you. It is indeed a relief to see that others have/are experiencing the same symptoms as me. I forgot to mention in my original post that my memory is REALLY bad. I have very poor concentration as well. Is this a symptom of celiac disease? I know it is related to Hashimoto's disease. I am just frustrated at having to go to some many different physicians. One for my thyroid, one for my blood, one for celiac disease and my Primary Care Physcian for everything else. Is there any such thing as a Immunologist? I'd prefer to go to a doctor who can treat and help me manage all of my problems, because, it seems like they are not all on the same page. What is my main condition and what are the other underlying conditions? I want to know if one thing exarcerbates another.

I find it so very hard to believe that gluten can make someone have all these symptoms. I am so pleased you feel "normal". I hope I can get there one day too.

At 38, I feel that I am going to have a future of chronic ailments and I am pretty depressed about it, but life goes on.

Have a great day,

SharonP

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Sharon,

I just read your post and can say I understand at least to some degree how you feel. I identify with many of your symptoms and I too, am waiting on the results of my endoscopy, which I had done yesterday. I am 30 and since the birth of my daughter 2 years ago, I have dealt with one illness after the other. It started with a stomach virus, just days out of the hopital, followed be headaches that I had ver had before and lasted for approx. one year (every day). I had an MRI of the brain which was normal, because my doc. wondered about MS (I had weakness in extremeties, and tingling in arms and legs--I was clumsy, aches and pains in legs especially). Those symtoms did improve (I don't know why), but then I got frequent sinus infections/colds. I was the first person to get sick and my house and the last to get better (still am). I have bloating, gas, diarrhea off and on, and abdominal pain (some days are almost symptom free--other days are bad). I have always been VERY thin despite having a great apppetite (I LOVE food!). I am the envy of all my friends (now my eyes are rolling). Oh yeah, and this past year I had some routine blood work, and the iron was low and I was borderline anemic--doc doesn't know why and didn't seem to concerned--said my energy levels seemed to be fine because I was able to chase my two toddlers around his office! I don't WANT to have celiac disease--but I have to admit it would be nice if it explained what has been going on with me. I should also mention that I have had joint problems since early adulthood--and my first year as a nurse I was convinced I had leukemia or something because I had major flu-like illnesses like eight times in one year, later I figured it was just because I was coming into contact with so many germs at work (now I wonder). I also was diagnosed with hypoglycemia a few years ago. So, Sharon, I hope that you find the answers to what is going on with you. People here are very helpful and caring. If you are ready to try gluten-free--go for it! What can it hurt? I should take my own advice--I have yet to start the gluten-free diet.

For any others reading this, I am wondering how common it is to have only one or two antibodies on the celiac panel come back positive? I believe it was an IgG that was in the 80's, and onw other thing was a high normal 2.0? As I said I havn't gotten my endo results back--the doc said he was going to take 6-9 biopsies and go as far down as he could. Could there be other reasons this level could be elevated? I know this is a question for my doc--I just thought others might have some experiences of their own to share.

Karina

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Hi Karina,

Sorry to hear that you are suffering some of the same ails and then some.... I rarely have headaches so I'm thankful for that. It can't be easy with a 2 year old. My son is three and I feel my symptoms got worse after I had him, not to mention I went into pre-term labor at 32 weeks and had him 10 days later. My body just couldn't tolerate the pregnancy anymore. I have always been on the weak side, with fainting, blackouts, dizziness - heck I'm permanently light-headed. Never did any sports or go to the gym, though I have considered strength training.

I developed pregancy induced Carpel Tunnell in boths wrist, which has weakened them further. It is pathetic - can't even open a bottle of pasta sauce!

You sound like you have been thru the ringer as well and have not found a satisfactory explanation either. I've also had MRI's, Cat Scans, Ultrasounds, Nuclear Scans, you name it, I've probably done it over the years. You obviously have a very fast metabolism and probably lost your baby weight the next day. It was easy for me as well and I have 3 kids. So many other conditions are related to celiac disease and one of them is thyroid disease. I urge everyone who has celiac disease to have their thyroid levels checked. You Thyroid controls so many functions. I am prone to infections (bladder and yeast) but haven't had a cold in ages. It's weird.

I hope your biopsy results come back negative as well as mine. I'm not too I understand the meaning of the two different antibodyies. On my Celiac panel, one was in range and other other was a very high positive and indicative of sprue (is there a difference between Celiac Disease and Celiac sprue?

Good luck Karina,

Best,

SharonP

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Dear Sharon, Karina and others...

After hearing more of your situations I realize now that what I was feeling could indeed be considered "normal" for celiac. I have 3 children... and yes, the pregnancy weight came right off... in fact I used to eat as much as (or possibly more than) my 6'2" husband (I'm 5'1") and not gain a pound. I also had carpal tunnel in one wrist after one of my pregnancies, then the fibromyalgia kicked in. I craved ice constantly...and went for every imaginable test. So many in fact that when we received the Celiac diagnosis we felt like having a party! It could be so much worse.

Sharon, I'm not at all familiar with your other condidtions, but I hope that a gluten-free diet will help your pain. I understand the frustration with so many doctors... it would make sense to have all the sypmtoms analyzed together to come up with one "whole body" solution.

Karina, regarding your question about the blood screening, all of mine (IGA, IGG and tTG) were NEGATIVE for celiac. And after my biopsy the doctor said he would eat his hat if it didn't come back positive... he could see the damage during the endoscopy.

.... Also, all of my children were 2-4 weeks early, my third was the latest...after 4 months on bed rest... I have no idea if this is related to celiac, but it is another commonality.

Since my diagnosis 1 year ago, my sister and daughter have been biopsy diagnosed. My daughter had NO symptoms but elevated blood tests.

Take Care,

Ruth

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Sharon,

Yes, I lost the weight without any difficulty after having both my babies--I nursed them both for over a year so I'm sure that contributed to the weight loss. I had quite a time trying to gain weight during my pregnancies, and I had to take iron. My last child had to be induced because the placenta started deteriorating--and the doc said he didn't know why because I didn't meet any of the risk factors for that (diabetes, smoker, drugs, etc). I did have one of my Thyroid levels come back abnormal. It was the T3 I think, and the doc didn't really know what to make of it, everything else was ok. Interesting how all this is like putting a puzzle together, isn't it?

Ruth, thanks for sharing about your lab results. I don't know what my small bowel looked like (doc was long gone when I woke up). It's good you are finding out about your kids--you may be able to save them from a lot of illness and grief!

karina

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Dear Ruth and Karina,

The commonalties we share are quite surprising to me and a relief at the same time. It is very difficult when you have an infant and your health is decling for reasons you don't understand. I nursed my last for almost a year as well. For me, I couldn't wait until the pregnancies came to an end. I hated being pregnant from the minute of conception to birth. I was sick 24/7. People always tell me they can't believe I have 3 kids etc., it's either good genes or bad immune system or both!

I will get my endo/colonoscopy results next Thursday when I go back for a follow-up visit. I'm just praying the biopsy comes back negative and that there's a good explanation why my IGA was positive. Though when an antibody show's up it usually means that you've got it or you're going to get it.

My daughter is 10 and she too has had a lot of Gasto problems. She is severly lactose intolerant. She weighs a whopping 541bs and looks like a stick! She had and endo/Colonoscopy last year to check for Celiac but the biopsies came back negative although there were several areas in the colon that we flat and or smooth. I don't recall her Dr. doing a Celiac panel and when I mentioned it my doctor, she told me to tell her Dr. to do one. My daughter is a very picky eater and her lactose intolerance doesn't make things easier. Her cousins who are the same age are starting to go thru puberty but she is not. She is a little unhappy about it and I wonder if her failure to put on weight will delay her. I guess these are questions I should direct to her pediatrician.

One other thing I forgot to ask is - does anyone have these tiny bumps on their palms and soles of their feet that just just come, break and go- sometimes in clusters? They look like teeny tiny warts. I have a few in each of my palms especially around the thumb area - itches too. I would understand if it were just my hand 'cos I use a lot or harsh detergents and cleaners without gloves sometimes but they are on my feet so, there goes that theory.

What next I wonder.

Thanks for listening,

SharonP

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Sharon,

I don't have the rash you describe, but check out the Dermatitis Herpetiformis (sp?)section of this message board. Sounds like what others have.

Take Care,

Ruth

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Sharon, I have had dermatitis herpetiformis since I was around 14. I am now nearly 70. I was only diagnosed with celiac disease 3 years ago after I developed the intestinal part of the disease, which I may not have developed if I had been properly diagnosed to begin with. But 50 years ago no one understood the dermatitis or celiac disease. What you have sounds like what I had, except my rash was all over my legs, arms and face and itched terribly. So-o-o, it has taken me 3 years of being gluten free to get rid of most of my antibodies and most of my rashes. Take heart, a gluten free diet does work, it just takes a long time if you are misdiagnosed. Shirley

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    • Post thought here, how much gluten were you eating for your challenge? You do know only have to eat like 1-2 crackers like a saltine, wheat thin, or ritz a day or a half slice of bread. If it is just the drugged feeling you might try it at night before going to bed and sleep it off. This was still too much for me years ago and now days would lay me out puking for hours.
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I took the antibiotics for a bit but ended up spilling them into the sink at which point I figured I probably couldn't use them anymore I don't remember any of my gastro symptoms then as i didn't think anything of them. All I can remember is being constipated for days on end, which wasn't very fun either. Eventually, I went back to the GP and she prescribed me elavil for my tinnitus and my nerve pain, which made just about everything that bothered me wither away at that point. The strangest thing, actually, was that my symptoms went away BEFORE I started taking the pills. Of course, I didn't know what happened, but I had a day when my symptoms went away before coming back again and I didn't want to take a chance, so I started the medication right away, and they never did come back. Swell right? WRONG.   I had a happy few months between Late March and August that seemed swell, except that I couldn't quite enjoy things like I used to, and I was saying things to my online friends that made them shy away from me. I was convinced at this point that I was just going crazy. My mother is schizophrenic so I just sort of took it as is and was getting ready to tell my doctor and see if the symptoms would go away if i stopped the pills. I didn't do this in reality, as a matter of fact, I told the GP I felt great and she suggested that I increase the dose from 10mg to 20mg. I didn't do this for a while, but I got into an argument with someone that I was just starting to become friends with and decided that enough was enough. I popped that extra 10mg and was ready to crank it up a notch to keep the depression at bay. It seemed to be working, but about a week later, I began to develop a burning pain under my right rib. Uh-oh! I started to google again, but my anxiety was still pretty much under control. I tried to convince myself I had colon cancer, but it didn't hit me hard until I told the doctor I thought the pills were causing the pain and that I was going to stop taking them. This is pretty much where things took a turn for the worst. One day, after I had a couple corn dogs and french fries, I went to the bathroom to find that my stool was yellow and there was blood. Immediately I panicked and called my GP. A lot of things have scared me these past few months, but none more than that instance. The occult blood test came back negative, what do you know. I was pretty healthy at around 147 pounds, my average weight. I told myself at that point that I would turn my life around before things got any worse. I wanted to go vegetarian and avoid meat for the rest of my life. That seemed like the best option at that point. Well, I was wrong, because I was probably b12 deficient, and where does b12 come from? Yeah.... Well, it probably wasn't colon cancer, so what else could I convince myself it was you ask? Pancreatic cancer. I rolled around in bed, night after night, feeling extremely tired, and at the same time, not being able to sleep. When I closed my eyes I had visions of what my organs would have looked like with cancer spreading everywhere. Other times I would envision my own funeral 2 months later after a very painful death. I was very spaced out. It was beyond brain fog. Not only was I so bloated I couldn't eat, but I just made it worse by taking immodium. After that it was god awful. If I was dying, I just wanted to know what was wrong with me, if I had any fighting chance at that point. I think I went down to 136 at this point. I got the blood test and was prescribed a different antidepressant by my doctor. I waited until my test results came back to take it. By that time, I had dark circles under my eyes and white patches on the insides of my cheeks. I came back to get the results of the test, and to my surprise there was absolutely nothing wrong with me (at least that could be seen from my blood). I already started eating meat again by this point. WBC 8.7 (normal) RBC 4.94 (normal) I wasn't even anemic. I swore that my skin started to yellow. I was constantly checking my eyes and suffering. I decided this was the last straw. I started to take the medication the doctor prescribed me, and I felt great! But a couple days later, I took the full dose and woke up the next morning, not being able to breathe and with a super fast heart rate and dilated pupils. This was my first time in the ER. The docs were dumb as rocks. They told me that it was "just anxiety". I couldn't even feel the move the left side of my body. I nearly died, and those kooks told me that I had anxiety! They made me sit in a chair for 30 minutes while the reaction went away! (not to mention I got the bill recently from that ridiculous debacle and they're trying to charge me $4000 for letting me in the door and sending me out.)   Anyhow I'll summarize the next few months between the ER incident and now, including a 2nd time I landed in the ER, wowee! -Lost 6 more pounds between that point and about a month ago. -Kept taking paxil and had several more reactions similar to the one that put me in the ER. -Learned about b12 deficiency and was convinced I had pernicious anemia for a while. Taking multivitamins staved off some of the symptoms, including the bloating. -Some mulitvitamins I bought actually made me feel worse including making my joints hurt, although this may be actually due to wheat, as i've learned -Fatigue became progressively worse. I've got Lymph nodes raised all over my body and I was sleeping most of the day before I stopped eating gluten entirely -Was constipated for days on end. My bowel movements improved with experimentation, although I still couldn't figure out what the problem was. I knew that things like French Toast would make my stomach hurt, but I didn't draw the conclusion because I was convinced that fatty foods would help me gain all that weight back (It obviously didn't. As a matter of fact it was probably why. I'm still sitting at around 132 but at least I'm not dead or getting worse from what I can gather.) -Extreme brain fog until I started taking large dose of sublingual b12. I play a lot of video games and my coordination was god awful.  -Took a non-sublingual b12 pill which made me bloat big time. I should have checked to see if those pills had wheat. -My hands and feet felt like blocks of ice, and my feet burned when I got in the shower. -Developed Tachycardia. I'm not sure when, but my resting heart rate is unsettling. Doctors said nothing about it -Diagnosed myself with several cancers and had several panic attacks which I used my b12 tablets to quell. -Tried to take Elavil again, and woke up with a strange feeling in my left arm, so I stopped taking it.   I ended up in the ER for the 2nd time a few weeks ago. This time I was sure I was going to get the answer I didn't want to hear. "We've examined your chest X-ray and found cancer spreading throughout your body" or something along those lines. I knew that there had to be something going on. I went in there for chest pain, but I had to tell the GP about what was going on. The weight loss, the abdominal pain that mysteriously disappeared months beforehand after I took the pills. He suggested that it must be some sort of malabsorption/malnutrition that was doing this, and I was convinced that an H Pylori infection was the cause. Anyhow, my chest X ray came back normal, as did my blood test, and when I got home, my grandma suggested that I look into Therapy. (as if that would somehow help with the chronic fatigue and other debilitating symptoms) I had nobody else to turn to, so I emailed my grandma and told her everything that was going on. She told me that she thought I had celiac disease, and so far, the results aren't too bad. I've gotten "glutened" a couple times so far, but my constipation is gone, and I've gained a little bit of my weight back. I'm not even sleeping as much as I was. I'm still going to see a gastro, a dentist, and a derma about my more serious concerns, but overall, I don't feel too crappy. I've even got my appetite back. Anyhow, if you've made it this far, I'm glad, as it has been a really bumpy ride for me. I've still got a lot of health anxiety about cancer, but I finally feel like I'm on the right path. I didn't even think I would be alive right now, especially not at 2 in the morning, with only minor aches and pains. I hope I can eventually get diagnosed and get used to this place.        
    • https://www.starbucks.com/menu/food/hot-breakfast/gluten-free-breakfast-sandwich "It's all prepared in a certified gluten-free environment and sealed for your safety. We then warm and serve it in its own oven-safe parchment bag to avoid any cross-contamination."
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