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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.

Am I Being Shoehorned / Misdiagnosed?
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Hi,

My name is Justin. I'm a 37 yr old male from Texas. About 3 1/2 months ago i started getting nauseous, vomiting, and having pain in my abdomen. I also have a lot of gas and would get really really bloated if i ate more than about a handful of food at a time (I have kinda big hands). I had diarrhea for a few days, but then it stopped and a few days later had constipation for a couple of days. And more pain. Driving in the car for any length of time causes a crushing pain (like something is being smashed between my ribs and hip)

Over time most of the symptoms calmed down. I always have pain in my right side abdomen, usually in the front, almost always in the car. Sometimes it's a dull ache, other times it can become sharp. The nausea is gone (unless the pain gets bad and then it comes back), i haven't actually thrown up in quite a while (other than the half slice of pecan pie 2 days after thanksgiving) sometimes i get pain in other areas like the back just above the kidneys on both sides but i think that may be mostly gas. gas is still there. For the most part that's it.

I was initially diagnosed with food poisoning (there was some bad cheese dip involved, i wasn't the only one sick) , given phenegran, pain killers and antibiotics and sent on my way. When that didn't help i ended up in the ER and was told i had a kidney infection, more pain killers, more antibiotics (Dr's love those tings), a stool softener, and more phenegran, and sent on my way. When it still didn't go away the PA i was seeing gave me more antibiotics this time Cipro (a rather nasty one) and said "maybe you're just nursing some kind of infection in your intestines."

I've had 2 rounds of CT scans, blood work etc looking for kidney and gallbladder stones, as well as looking for tumors on kidneys and liver. nothing. When those were done i waited 3 weeks in pain to be told to schedule an appointment in the middle of Nov (another 2 weeks) to discuss the results.... i ended up with strep throat, (another round of antibiotics.. I'm pretty dang sure this ISN'T a bloody infection) but ended up with a new PA who listened to me. She at least listened enough to take me off the new BP meds i had been changed to and put me back on the old stuff (these issues started about a month or so after changing the meds i thought it worth a try). She then said she gave up and sent me to a Gastroenterologist.

From visit 1 they were mentioning Irritable bowel syndrome, and celiac disease.... I mentioned gallbladder and was told they didn't think that was an issue. Had my first alien abduction (colonoscopy) and an endoscopy. they biopsied akll through me, found 1 tiny pollop, a few tiny diverticula, and nothing else anywhere. everything says "normal mucosa" (oh and the pollip and diverticula were in left and back areas ... wrong place)

He is back to saying celiac disease, over the phone i was told biopsy showed possibility? and i am to go in friday to do the blood work. (I haven't tried gluten free diet yet as i didn't want to possibly skew the test results and get a false all clear) This guy is rather pushy about celiac.

Here's my issue with this. I've eaten wheat all my life. I live on pasta. I cook Italian, French, and Mexican all the time (i do all the cooking in the house i i really do mean ALL the time). My best friend is Italian and swears i have to be kin because i cook, eat, and act like one of her family. I'm still eating wheat stuff. My current diet consists of raisin bran in the morning (i was told to maintain high fiber diet for the diverticula... which conflicts with the reduced fiber diet for IBS but whatever...) so raisin bran in the morning, for lunch i have chicken noodle soup, a small salad, and container of honeydew melon from central market (cause i know it won't cause severe issues), and whatever for dinner, but i've been keeping it rather tame and stick to salads, and small softer meats. On occasion i've had crackers, meats, and cheeses for lunches on the weekends. So there is a good amount of glutin containing foods in here. Some times I hurt and have nausea, other times it's just that mild ache in my lower right side (just under the ribs). Last night i had Lasagnia, salad with crutons, small piece of bread, and stuffed mushrooms. I was fine (other than dull side ache and the now normal gas).

I would figure given the amount of gluten in my diet i should be having issues every day... or at the very least my pain and other issues should be fairly consistent not very mild for 4 days and then 6 hours of massive pain and suffering and then back to mild again for 2 days etc.

I know people with I.B.S. they are usually perfectly fine unless the IBS strikes then they are SICK... also IBS causes bad diarrhea or bad constipation. i'm not like that i'm in mild pain / pressure in just the right side all the time. I very rarely ever have diarrhea or constipation. Also IBS is usually connected to stress and i have pain whether I'm stressed or not, even while trying to meditate(not hugely successful these days), or while soaking in a hot lavender bath. Dr's seem to be very eager to diagnose IBS now, and it seems for most the diagnosis really means "I have no idea what's wrong, this is way out of my league, but rather than tell you that i'm going to tell you you have IBS, there's no cure, and you just need to learn to live with it".

If i have Celiac that's fine i suppose I'll just have to learn to live with it, but it feels to me like i'm being shoehorned into a diagnosis that doesn't seem to fit... I figure you guys are the pro's. You live with this disease, day in and day out. You experience the suffering. Maybe you might be able to shed some better insight on it than a man who isn't suffering and has no vested interest other than collecting insurance money and getting to the next patient.

Your help and wisdom would be greatly appreciated.

Justin.

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Hi and welcome to the board, Mordikar.

You are absolutely right to resist the trash can diagnosis of IBS, otherwise known as "I Be Stumped". It is trotted out so often as to be a cliche. Just like a migraine is a headache.... I would actually not believe anyone who told me that they had IBS - it is only that their doctor has convinced them to accept that diagnosis (heck, I was given it myself for years).

So what are the celiac symptoms - well, there are over 200 of them, but most doctors can't get past failure to thrive as a child, wasting, diarrhea, so at least yours is willing to entertain the idea.

Now, why could you eat gluten all those years and then suddenly have a problem. Well celiac is a genetic condition, but to carry the gene just means you have a genetic predisposition to develop it, not that you will. There is normally a triggering event, some physical or emotional stress or trauma, illness, childbirth, auto accident, you pick your particular stressor -could have been the food poisoning, and antibiotics are one of the known triggers. And it often comes on just out of the blue, while others have a gradual worsening of a lifetime of symptoms. Pasta and bread and Italian, not a problem until the trigger strikes.

So why this sudden probleml? Number one, the trigger, and number two, your body creaates antibodies to the gluten once it decides that what is floating around in your bloodstream is "non-self", i.e., foreign. These are autoimmune antibodies. So it does the best job it can in dealing with what it perceives to be invaders, sometimes a better job than others depending on how energetic it is that day and what kind of load you have presented it with. Sometimes it depends what you eat with that gluten. Pizza always used to be my comfort food because I always had cheese, pepperoni, mushrooms, sausage - oodles of fats to counterbalance that gluten.

Gluten can cause diarrhea, constipation, alternating between them both, or be totally silent in the gut. Some people have no digestive problems, only neurological. And it's doctors who connect IBS to stress and try to tell you you have stress whether you are aware of it or not :rolleyes:

The good thing is that if you have celiac there is a cure and it requires no expensive or invasive treatment - just a change in your lifestyle. If, as most doctors want, you have IBS, then you are stuck going back to them all the time for prescriptions to handle your symptoms rather than dealing with what causes the problems in the first place. But they can't shoehorn you into a celiac diagnosis - heck, half the people who regularly post on this board have spent half a lifetime trying to get a diagnosis of celiac, and many of us fail. It is no easy task, because there is a 20% error rate of false negatives on blood testing and endoscopy with biopsy. So only 80% of the people they think of testing who do have it actually get diagnosed. For every diagnosed celiac, there are about six people wandering around out there who are gluten intolerant (same symptoms) but who cannot pass the celiac test :P It used to be doctors would tell them to go away and eat gluten to their heart's content. At least that is changing and there is a recognition that you can have a gluten problem without having celiac.

So when you go back to the doctor for your blood work, get a copy of the pathology report of the biopsy and tell us what it says. And then you will have to wait a week or so for your blood results. Make sure you get copies of these also because you may want to tell us what they are and to take them to some other doctor. Until then, keep eating your gluten like the good lad you are because to stop now could affected your esults.

Good luck on Friday. :)

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Wow, mushroom summed it up pretty good. I percieved myself as fine until one day in Feb. 2006(I thought I was fine for 33 years). I was suffering from severe tachycardia and ended up in in the ED. I was given meds to get my heart rate down. Long story short this was my first symptoms...so not GI related. Then the fatigue set in. Next the horrible reflux all day with no relief. About a year or so later it was found that my ferritin was in the toilet. I began researching links to anemia/iron deficiency and hashimoto's disease(which I have had since 1999) and links to celiac kept coming up. As I read the exhausting list of symptoms I began to think it was a real possibility. Of course I was in denial. I finally mustered up the courage to ask my endocrinologist 6 months after I started reading about it. I had positive blood work and a positive biopsy a month later. It was a total of 2.5 years from my first symptom that I was diagnosed at age 35. After I went gluten free and was for awhile, if I accidently got gluten I reacted horrible. I never had before while eating it. Your body will try to deal with things the best it can. When the problem is removed it starts to heal. When it is added back in it will attack with a vengence.

Then you have people who are silent celiacs and exhibit no overt problems even if the eat gluten or get cross contaminated. Damage is still being done in their bodies. Celiac/gluten intolerence puts us at higher risk for other autoimmune diseases also. Untreated celiac also raises the risk for cancers.

I don't think your doctor is trying to shoehorn you at all. He/she is better than most to even mention celiac, test for it, and recommend gluten free to you. So many people get the IBS diagnosis which is a total crock of a diagnosis. It is a set of symptoms. Yes their bowel is irritable because something is wrong. So many people that get the IBS lable slapped on them are probably undiagnosed celiac or gluten intolerent.

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Thank you both very much for your insight and knowledge. I appreciate it very much. I suppose I'm just so violently opposed to having this (and loosing so much food I love) that I'm trying not to believe it. :(

Again thank you. I'll keep you posted on the results.

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Count your blessings that you have a doctor good enough to figure out what's going on. A positive biopsy is pretty much diagnostic for celiac. You MUST try the diet even if the bloods come back negative. They may because you've only been celiac for 3 1/2 months, which isn't long.

The damage from undiagnosed celiac is truly terrible. Brittle bones from poor calcium absorption, nerve damage from B vitamin deficiencies, joint pain, thyroid problems. You can probably recover fully by changing your diet. I know gluten-free seems hard but there are some very good gluten-free pastas and eggs with gluten-free toast makes a lovely, nourishing breakfast. You'll have plenty to eat and feel much better.

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Real Mexican, Italian, et French cuisine have very little gluten.... the fact that you already cook will make it easier to switch to gluten free than someone who expects to be just fed or use a drive- thru fast food window (shudder.... :ph34r: )

Mexican you switch to gluten free indigenous foods of the Americas, such as quinoa, amaranth, corn, beans, squash.

Italian, you use rice pastas. Rice, vegetables, olive oil, fish, many cured hams, cheeses, olives, almonds.... all gluten free. You adapt to making your own pizza crust, and many restaurants now have a gluten-free option.

French food - the bread will need to be subbed, but most other stuff is already gluten free, sauces are easy to make gluten free.

Indian food is easy to make yogurt and cream based curry sauces for vegetables, served with rice, and use bean flours for the flatbreads.

Thai food with rice noodles is easy to make gluten free. So is Pho soup.

Lots of brands of rice crackers available to go with snacks.

Really not a limiting menu.

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Kiddo,

Your doctor is not pushy, he's thorough. He's wonderful!! He's enlightened!! I would have given anything if my former GI had been so thorough. Mine mis-Dxed me for 12 years.

The "shroom", Roda and Skylark and takala speak the truth. I can't add much more to what they have said except, I was "mostly fine" too (IBS, GERD, MUSCLE and JOINT PAIN, Miscarriages, but "fine") ...until I wasn't. Then my life took a swan dive you cannot imagine in 2008 and I lost 3 years in pain hell trying to GET A DIAGNOSIS. That "trigger" Mushroom mentions? --flipped on ---and I was slowly dying. The bowel issues --which are horrid enough---are nothing compared to what happens if you do not know about gluten or if you ignore the diagnosis. I'll spare you the "deets" but just know, it's life altering.

Going gluten-free saved my life. :)

If you have celiac, do not despair.

There is life without gluten and many yummy alternatives. I promise you! ;)

Keep us posted!!

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Again,

thank you all very very much. not only for the knowledge and advise but also for helping me correct my outlook on my dr, and on the possibility of having this condition. Here i should be thankful for a dr that is investigating, and for possibly catching this before it does severe dammage, and instead i'm griping because i don't want to give up pasta. :(

Thank you very much indeed.

Justin.

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Again,

thank you all very very much. not only for the knowledge and advise but also for helping me correct my outlook on my dr, and on the possibility of having this condition. Here i should be thankful for a dr that is investigating, and for possibly catching this before it does severe dammage, and instead i'm griping because i don't want to give up pasta. :(

Thank you very much indeed.

Justin.

Gripe away. We all hated giving up pizza, pasta, real bread, donuts, etc. Everyone has foods they miss and it truly is a difficult change. I eat rice pasta happily but I've never found a substitute for crusty French bread. :unsure: You will find a lot of empathy on the board because we all struggle to some degree with the diet. Please feel free to seek whatever support you need. We're trying to make it a little easier by letting you know how fortunate you are to get a fast and accurate celiac diagnosis, but it's still a big deal and we understand that.

Welcome to the gluten-free club. Pass the rice pasta, willya? B)

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Again,

thank you all very very much. not only for the knowledge and advise but also for helping me correct my outlook on my dr, and on the possibility of having this condition. Here i should be thankful for a dr that is investigating, and for possibly catching this before it does severe dammage, and instead i'm griping because i don't want to give up pasta. :(

Thank you very much indeed.

Justin.

Your concerns are very real, Justin --and you get to gripe big time!--we totally understand that!!! We vent on here all the time!

But here's the thing....You do not have to give up pasta. Just WHEAT pasta. There are rice and corn pastas that are DELICIOUS! There are breads, pizza crusts, pie doughs, cookies, even donuts...all of it....it's just not made from wheat flour.

We can help you with dietary advice later. Don't worry about that.

One step at a time.

Keep us posted!!!

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Blood work was just taken and went oer my biopsy results.

He said here is something causing my intestines not to break down and process food properly.

Biopsy results:

non specific mild duodenal intraepithelial Lymphocytosis. Intact villi.

isolated finding is of uncertain significance, it could be related to clinically latent celiac sprue, nonsteroidal anti inflamitory drug use, infection (including helicobacter), lymphocytic colitis, stasis / bacterial over growth, and systemic autoimmune disease.

I begin my gluten free life tomorrow. I am trying to look on the bright side. All the pastas and breads have been keeping me from loosing much needed weight. I am 254lbs should be closer to 200 - 210lbs. So I also will be getting back to my exercise routine (starting slowly with the cardio and once i build hat back up i'll later add some light weights in) so this is a GOOD thing. really.

I'll let you know once the blood results come back.

He is also scheduling sonograms for my liver, gallbladder, etc just to make sure there are no additional issues there contributing to my symptoms.

~Justin

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Blood work was just taken and went oer my biopsy results.

He said here is something causing my intestines not to break down and process food properly.

<snip>

~Justin

Hi Justin,

The biopsy results sound inconclusive and non-specific.

You can go gluten-free if you want to. It certainly won't hurt you. However, if your blood test comes back negative, you're not a celiac. Congratulations.

BTW, you may not lose weight on a gluten-free diet. I gained a couple pounds when I went gluten-free because my body suddenly started absorbing nutrients, but I lost 2 dress sizes because all that bloating when away.

I hope the best for you.

TK Kenyon

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Increased duodenal intraepithelial lymphocytes are usually seen in the very early stages of celiac. I'ts good news the villi are not damaged(yet). It is wise of your doctor to check other things out also. Sounds like he is being thorough. If, in the absence of the other mentioned conditions and even in the blood tests should come back negative, it is worth giving the diet a good try. Sometimes the body's reaction is the best test. Let us know what the blood tests say.

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Keep in mind that there is a high false negative rate in bloodwork (I have read up to 30%). Many people have had negative bloodwork and still feel that they have celiac or gluten intolerance. Not only that but there is a much higher false negative biopsy rate, too. One reason is that far too few biopsies are taken so it is missed.

BTW, you can make excellent scratch gluten free pasta. I've been so disappointed in most commercial gluten-free pastas that I have been in pursuit of that perfect recipe. Found it! Guests just could not believe it was gluten free. :P Can't find what you need at the store? Make it!

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BTW, you can make excellent scratch gluten free pasta. I've been so disappointed in most commercial gluten-free pastas that I have been in pursuit of that perfect recipe. Found it! Guests just could not believe it was gluten free. :P Can't find what you need at the store? Make it!

I'd love to hear it... I've been told by an Italian friend of mine that i'm "too italian" and won't appreciate the store bought pastas... we'll see. but i'm definitely game for making my own. (welcome back portabella mushroom and onion ravioli!!!)

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I was NEG on blood testing--as are many others on this site---yet, we are celiacs nonetheless. I have to disagree with the poster above (celiacmaniac)who says if your blood panel is NEG you do not have celiac. That is not necessarily true.

And Justin, your biopsy result report suggests it could be many things, including latent celiac. Latent celiac refers specifically to individuals who have abnormal antibody blood tests for celiac disease but who have a normal small intestine and perhaps, no signs or symptoms of celiac disease.

And RODA is correct.....Increased duodenal intraepithelial lymphocytes is a key histological finding in celiac disease. So, yours may be "mild" now, but...

http://www.ncbi.nlm.nih.gov/pubmed/18298288

I think you are very wise to go gluten-free.

If you need ANY help with negotiating the nuances of gluten-free living, please ask.

Happy to help!!!

Regards,

Irish

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Increased duodenal intraepithelial lymphocytes are usually seen in the very early stages of celiac. I'ts good news the villi are not damaged(yet). It is wise of your doctor to check other things out also. Sounds like he is being thorough. If, in the absence of the other mentioned conditions and even in the blood tests should come back negative, it is worth giving the diet a good try. Sometimes the body's reaction is the best test. Let us know what the blood tests say.

not certain how thorough he's being... he's doing the sonograms because i was adamant and insisted they be done. At one point i definitely hard the tone of 'just live with it' .

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Hi Justin,

The biopsy results sound inconclusive and non-specific.

You can go gluten-free if you want to. It certainly won't hurt you. However, if your blood test comes back negative, you're not a celiac. Congratulations.

BTW, you may not lose weight on a gluten-free diet. I gained a couple pounds when I went gluten-free because my body suddenly started absorbing nutrients, but I lost 2 dress sizes because all that bloating when away.

I hope the best for you.

TK Kenyon

I take it you're not aware that the blood tests only work about 70% of the time, TK. You also wouldn't expect to see total villous atrophy after only 3 1/2 months of celiac disease. I guess you haven't looked at the gluten challenge medical literature either.

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I'd love to hear it... I've been told by an Italian friend of mine that i'm "too italian" and won't appreciate the store bought pastas... we'll see. but i'm definitely game for making my own. (welcome back portabella mushroom and onion ravioli!!!)

As a serious foodie/gourmet cook, and a lover of Italian food especially, I was thinking my joy of cooking/eating was over. That's just not true.

Mary Capone, Kelli & Peter Bronski, and many others are chefs with celiac who prove that delicious, artisinal cooking is still possible.

Have fun with it!

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I take it as a challenge to make great food with limited ingredients. Sort of like Iron Chef but in reverse. B)

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I'd love to hear it... I've been told by an Italian friend of mine that i'm "too italian" and won't appreciate the store bought pastas... we'll see. but i'm definitely game for making my own. (welcome back portabella mushroom and onion ravioli!!!)

I understand! I refuse to settle for second best and strongly dislike corn and rice pastas. I know, pretty picky. I've been to Italy at least 10 times and teach culinary classes, including pasta making. This is the best recipe I have tried to date. I use my KitchenAid stand mixer pasta attachments but you do not have to. Last time I pulverized some porcinis and added that powder to the dough for some mushroom-y impact. I served it with mushroom duxelles. Next time? Ravioli with chesnut filling.

http://glutenfreegirl.com/gluten-free-fresh-pasta/

The first time we had a bit leftover for the next day and it was just as good. No clumping, lumping or anything at all. Just fine re-heated. Make sure to only cook to al dente - only a couple of minutes.

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I take it as a challenge to make great food with limited ingredients. Sort of like Iron Chef but in reverse. B)

That is my favourite show. I know exactly what the chefs are making nearly 100% of the time within seconds as I have much of the same equipment and use fantastic ingredients and know the techniques. I am starting to get into sous vide.

I cannot fathom purchasing gluten-free pasta, cakes, cookies, pizza, scones, desserts, bagels, focaccia any longer. There just is no need to if you have the passion and time for creating your own. My freezer now has 21 kinds of flours so I am prepared for nearly everything under the sun! :lol:

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That is my favourite show. I know exactly what the chefs are making nearly 100% of the time within seconds as I have much of the same equipment and use fantastic ingredients and know the techniques. I am starting to get into sous vide.

I cannot fathom purchasing gluten-free pasta, cakes, cookies, desserts, bagels, focaccia any longer. There just is no need to if you have the passion and time for creating your own. My freezer now has 21 kinds of flours so I am prepared for nearly everything under the sun! :lol:

Oh my gosh. Do you have the vacuum sealer and do the water immersion cooking? Do you have one of those steamers? Do you have one of those instant ice cream makers? :rolleyes: Do you have one of these special grills that they lower the lid to the food? How big is your kitchen??? :lol:

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Oh my gosh. Do you have the vacuum sealer and do the water immersion cooking? Do you have one of those steamers? Do you have one of those instant ice cream makers? :rolleyes: Do you have one of these special grills that they lower the lid to the food? How big is your kitchen??? :lol:

We DO have some of that stuff as well as others! No anti grill yet, though, but that is a bit too pricey at many thousands of dollars. I want to make more charcuterie (am doing what I can) and take butchery classes. So, I am looking for a meat grinder et. al. Our kitchen is very big - I teach classes at our house usually. Sometimes at others' homes, too. Our kitchen is the reason we bought the house! Who cares about the rest of it? :lol:

Sorry to have highjacked the thread...just wanted to add to what others have said about the ability to cook and eat very well with celiac.

Edited by love2travel
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I understand! I refuse to settle for second best and strongly dislike corn and rice pastas. I know, pretty picky. I've been to Italy at least 10 times and teach culinary classes, including pasta making. This is the best recipe I have tried to date. I use my KitchenAid stand mixer pasta attachments but you do not have to. Last time I pulverized some porcinis and added that powder to the dough for some mushroom-y impact. I served it with mushroom duxelles. Next time? Ravioli with chesnut filling.

http://glutenfreegirl.com/gluten-free-fresh-pasta/

The first time we had a bit leftover for the next day and it was just as good. No clumping, lumping or anything at all. Just fine re-heated. Make sure to only cook to al dente - only a couple of minutes.

absolutely awesome!!!!! does it stick? if i get it wet and press it together? like for making ravioli???? i can definitely see it for lasagna, and spaghetti ...

I had been toying with the idea of getting my butcher to thin slice some chicken breasts, then cut them into strips, and season and pan sear them in olive oil, then use that to serve a nice red sauce over, kind of like chicken pasta... was trying to think creatively .. haven't gotten to it yet though...

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    • Hi Steph and welcome I'm yet another Brit, funny how the alcohol threads flush us out I don't drink now but after a big night I used to get truly savage all day hangovers, much worse than those of my friends. They could include splitting headaches, vomiting, nausea, a 'fuzziness' in my head, sweats etc.  After I put the pieces together and went gluten free I had a 'big night' on cider only and the next day was a revelation. What I'd thought was a 'normal' hangover was, for me at least, anything but. With gluten out of the equation hangovers were a breeze! The difference was mind blowing and just one more example of how gluten had been messing with me over the years. So when I read your post my first thought was that there was some trace gluten contamination going on. However: Obviously you've been at the diet for some considerable time now and know the score. I know Coeliac UK are firmly of the opinion that all spirits are safe but some (note some this a contentious one :D) members here will tell you they react to gluten based grain spirits for instance which distillation should render safe.  Then there's the dangers of shared lines if you're drinking say Strongbow in a pub as alluded to above. Lastly it its wine, there's the often cited but maybe apocryphal these days 'flour to seal the casks' possibility. Finally there's bar snacks, maybe a brand of nuts etc that you snack on that may have changed their production process? I'm sure you've thought of these already, but it may be useful if you post your alcoholic drink choices / bar snack of choice up here maybe someone will have some input?.   The second thing which leapt out was: Would you class yourself as super sensitive to cross contamination etc? Firstly that would make the cross contamination theory more compelling. You could test that out by having a drink at home under controlled circumstances to see whether the same issue arises? That could also answer the quantity question. Does one safe drink trigger it, two, three etc? Finally, and this is one that I find difficult, knowing you have the gluten issue may lead you to assume it's that when it could be something else. I tend to attribute EVERYTHING in the world to gluten these days due to it being able to affect me in so many different ways. Crisis in Korea? Gluten. Russian tanks massing on the Ukrainian border? Check their wheat intake. Global warming? etc. So it may make sense to pursue some other ideas at the same time. Try:  http://goaskalice.columbia.edu/answered-questions/suddenly-drinking-alcohol-makes-me-sick http://www.steadyhealth.com/topics/very-abnormal-hangovers-thinking-it-could-be-allergy-to-alcohol Cheers Sorry, best of luck! Matt  
    • Similarly, I've been vegetarian for 25+ years.  A 2015 Nature study connecting emulsifiers with microbiome changes has me wondering about the processed foods that I ate in the past, and I wonder about the wisdom of eating as much seitan as I did.  I mostly prefer my post-diagnosis diet since it forces me to consider every ingredient and to cook from scratch more.
    • LOL, that might put it into perspective if I explain it that way. 
    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
    • Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease.  They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD.  You should not have a goiter if your thyroid is functioning well and your TSH is "normal".  Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today.  Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free.  It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac.  I was diagnosed with Hashi's long before the Celiac diagnosis.  I am not sure Vitamin D has anything to do with thyroid antibodies but who knows?  Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South.  I take 5,000 IU daily and that is a safe level to take, believe it or not.  I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!
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