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      Frequently Asked Questions About Celiac Disease   04/07/2018

      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 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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cristiana

Is Coffee Allowed On Fasano's Gluten Contamination Elimination Diet?

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I have been thinking about trying Fasano's Gluten Contamination Elimination Diet.  Just recently I have had some of my symptoms back - tingling, ulcers, stomach pain.  It could just be caused by cc or the very rare occasion where I have eaten a mouthful of gluten by mistake, not really sure. 

 

Anyway, I am going to see my gastro consultant again but the appointment has been put back a bit so I thought I would try this whilst I wait.  At the very least it looks like a healthy diet which I think isn't going to do any harm - it might even do me a lot of good.

 

I have been trying to find out more on line but can't seem to find out if coffee/tea is allowed?  Can anyone help?

 

Thanks!

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Whoops!  Sorry.... I think this should be in the diet section? 

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Moved it for ya  :)

 

Colleen

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Really good question Cristiana...I don't have an answer, but am interested to hear the answer. I've heard this diet mentioned and have thought of trying it myself. If you decide to do it, please report back on any results!

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Coffee is not listed under beverages, unless you want to stretch things a bit and say it is 100% fruit/vegetable juice. Here is a link to the paper that discusses the diet. I am on the diet at the moment, trying to get my antibody levels down, It is so limiting that it does make shopping easy!

http://link.springer.com/article/10.1186/1471-230X-13-40/fulltext.html

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Thanks so much!  RMJ, or anyone else who has given this a try, can you recommend any hot drink alternatives that might be permissible.  I'm thinking probably root ginger sliced in water might be OK; mint or lemon in hot water.  Is there anything else that might be nearly as interesting as coffee?!   I think the coffee thing might be the most difficult for me......

 

Regarding your comment re: shopping list - I guess every cloud has a silver lining!

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Well, I confess (is there an emoticon for embarassed?) to not following it 100% (it is my idea to do it, not my doctor's). I have added Corn Chex, Lundberg rice cakes, and hot cocoa made with Hershey's unsweetened cocoa and sugar.

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Well cocoa is a plant.... I quite like the idea of that!

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I think I will count cocoa as a dried bean!

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Cocoa and coffee are both similarly processed... and there is a lot of processing involved to take it from the raw plant to your mouth.  While it is unlikely to come into contact with wheat, I would be careful where you source it from, and maybe try to get whole coffee beans you grind yourself.   Also, this is directed at all future readers as a whole, not one person... but if the gluten contamination elimination diet does not work for you and you didn't 100% follow the rules, don't say it doesn't work.  Try some time doing it 100% before considering it a wash.

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Laura - this is all very sound advice.  Have you done Fasano's diet?  I would love to hear from you or anyone who has.

 

I have been living with a few mild tinglies since about nine months before my DX.  They wax and wane, some come back in different places, sometimes start up again because of low blood surgar following exercise, other (for example a new buzz on my cheek) came about following a really stressful event.  Most of the time they are very much in the background.  I go through periods of next to nothing on this front.  But I now also have a very sore tum when I eat popcorn, lentils and gluten-free oats.  Never had a problem before DX.  NSAIDs are a no-no.  I just took a ferrous fumerate iron tablet this morning (I had run out of my gentler supplements) and the pain!  I just don't feel I am healing - unless of course there are new intolerances, sneaky gluten is getting in or maybe there's another gut issue.  I thought I would give this diet a go before I see my gastro.  

 

I really feel, though, that unless I take this diet gluten-free ultra - mega - beyond the call of duty - seriously the inflammation will never go away.  I am still amazed at the coeliacs I know who have had next to no symptoms since adopting the gluten-free diet.   I even have a lovely friend (she is wrong of course to do this) who takes risks and doesn't seem to pay for it - "I can get away with that she says".  I have warned her though... just because one doesn't feel anything is going on doesn't mean nothing is going on.

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I do feel good on this diet. Little stomach issues that my doctor discounted, or that I blamed on something else, have gone away.

I use Hershey's cocoa. It is not my favorite but it is on their gluten free list.

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I do feel good on this diet. Little stomach issues that my doctor discounted, or that I blamed on something else, have gone away.

I use Hershey's cocoa. It is not my favorite but it is on their gluten free list.

Hi RMJ...it's good to hear that this has helped you! A few questions:

How long were you gluten free before you started it?

What ongoing symptoms did you have?

How long after starting it did you feel better?

Have you tried reintroducing foods?

Thanks so much!

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I was gluten free (no gluten ingredients) for 2-1/2 years, I couldn't have a biopsy, but prior to going gluten free was high positive on five blood tests (Ttg IgA and IgG, DGP IgA and IgG, and EMA). I was tested due to genetics plus frequent migraines, not due to GI symptoms, although I have had mild troubles with nausea and stomach pain on and off during my life which I thought was due to nervousness, not food. After 2-1/2 years gluten free the IgG tests and EMA were normal, Ttg IgA normal but just barely, DGP IgA 45 and hasn't budged in a year (started at 143, normal is less than 20).

Prior to this diet I had occasional migraines (once every 2 months), occasional feeling full after eating (I thought I just overate), occasional stomach pain after eating, and lower abdomen pain if I slept on my back all night. I've only been on it 3 weeks, but have not felt too full and have not had pain when sleeping on my back. Too soon to tell if it helps the migraines. I plan to stay on it for 6 months and then have blood tests repeated. I also just feel good, but that may be because I'm enjoying some time off between jobs.

The diet says to eliminate dairy for the first month - since I'm trying to get antibody levels down, not alleviate symptoms, I'm still eating dairy.

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The problem I have with this diet is that the foods they cut out are foods that would be irritating to the gut anyway, regardless of whether or not they are supposedly contaminated, so you will never be able to know for sure what caused the slower healing.  They allow fruit juices, which are incredibly irritating to the gut lining yet no coffee, no matter how pure, is allowed?  That's just plain silly.  If I drank a glass of OJ, I would be in a world of hurt yet whole bean coffee, that I grind myself, produces no problems, no matter how much I drink.

 

christiana....your symptoms of tingling are neurological in nature and those can take a VERY long time to clear up, no matter how clean your diet is.  Mine took 3 years and I was uber strict with my diet and cooked everything from scratch.  I also think that most of us continue to have sensitive stomachs, compared to the general population who are used to eating crap, so when you eat something with a lot of fiber in it, like popcorn, lentils and gluten-free oats, it might bother you, regardless of what happened before diagnosis.  You may not have noticed it before diagnosis because you weren't feeling good all over.  I did not pop with lactose intolerance, or at least didn't notice the symptoms, until 2 years into the gluten-free diet.  Certain things, to this day, will bother me and it's not gluten. For some of us, complete healing just takes a long time.

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Hello Gemini

 

Thank you so much. So interesting that you took three years being as strict as that.   I guess I should take comfort that my aura migraines are gone, and I haven't got a nervous twitch with my eyes anymore - it seems something is working!  To be honest, the tingling only really gets to me when it is somewhere like my face, when it is in my leg I can pretty much ignore it.  And I guess healing is on my mind at the moment because I am currently experiencing the buzz in my face and I've been experiencing stomach pain after some popcorn and an iron pill, bad idea.  But it helps me to know that someone else's healing took just as long.

 

I think I might buy a coffee grinder! I've got into the habit of drinking it really weak anyway!

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I haven't felt the need to try the Fasano diet.  I do have problems with things like acidic foods and fatty foods, so there are other things besides gluten I don't eat.  

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The problem I have with this diet is that the foods they cut out are foods that would be irritating to the gut anyway, regardless of whether or not they are supposedly contaminated, so you will never be able to know for sure what caused the slower healing.  They allow fruit juices, which are incredibly irritating to the gut lining yet no coffee, no matter how pure, is allowed?  That's just plain silly.  If I drank a glass of OJ, I would be in a world of hurt yet whole bean coffee, that I grind myself, produces no problems, no matter how much I drink.

 

christiana....your symptoms of tingling are neurological in nature and those can take a VERY long time to clear up, no matter how clean your diet is.  Mine took 3 years and I was uber strict with my diet and cooked everything from scratch.  I also think that most of us continue to have sensitive stomachs, compared to the general population who are used to eating crap, so when you eat something with a lot of fiber in it, like popcorn, lentils and gluten-free oats, it might bother you, regardless of what happened before diagnosis.  You may not have noticed it before diagnosis because you weren't feeling good all over.  I did not pop with lactose intolerance, or at least didn't notice the symptoms, until 2 years into the gluten-free diet.  Certain things, to this day, will bother me and it's not gluten. For some of us, complete healing just takes a long time.

Such a helpful response Gemini...I feel so encouraged when I hear someone like you, 10 years in and doing great, say it took 3 years to feel well. That reminds me to be patient in this.

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My GI symptoms resolved fairly quickly, although I did not start to gain weight for 6 months.  It was the neuro symptoms that lingered for so long and the very last one to go took 3 years from diagnosis.  I was also 46 at the time so that probably factored in also.....that damn aging fairy!  <_<  I think once the neurological system is inflammed, it takes a very long while in some people to resolve.

 

Buy that coffee grinder and use well sourced, whole bean coffee.  I buy Starbuck's because its convenient and I love some of their offerings.  I am a coffee hound but stick to 2 cups a day because of my bone density.  I refuse to give up coffee.  I ate mostly whole foods but did and still do have a small amount of junk, like cookies I make from the King Arthur mixes and some store bought stuff that is certified gluten-free.  I went back to eating bread because I go to the gym so needed the carbs.  In all the 10 years I have been eating this way, my numbers on re-check are great...very low normal.  Just don't drive yourself crazy with it and overthink things.  If something doesn't agree with you, it may not be from gluten.  Take a break from it and try it again down the road. I was never a booze drinker because it ripped my gut to shreds.  After 3 years on the gluten-free diet, I decided to try some red wine and that may have been a mistake.  My love affair with the stuff continues to this day!  :lol:

 

Honestly?  You will understand this, icelandgirl.....my thyroid is a bigger pain in the butt than the whole Celiac thing!  If nothing else, ladies, you will walk away from all this with a much better understanding of patience!

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Thyroid is a pain from what I've seen people go through. However,  the age thing is another factor that just makes things even more difficult to figure out.  I often wonder if I had been diagnosed ten years ago as some of my friends were whether it would have been an easier ride.  However my overriding problem is being a lifelong hypochondriac, which has not got better since the gluten-free diet!  

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I haven't felt the need to try the Fasano diet.  I do have problems with things like acidic foods and fatty foods, so there are other things besides gluten I don't eat.  

 

So right Laura - I had awful pain with orange juice for so long!  But it took me soooo long to figure it out.  

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Honestly?  You will understand this, icelandgirl.....my thyroid is a bigger pain in the butt than the whole Celiac thing!  If nothing else, ladies, you will walk away from all this with a much better understanding of patience!

Oh yes...that thyroid has been literally kicking my butt recently...really hard to get it figured out and as soon as you do...it does something else to drive you crazy!

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I am several years into a gluten free diet and still experience severe constipation. Although I do not have a definite diagnosis, I was thinking about trying this diet also. I have two questions. I am already dairy free but wonder if I can add dairy free products in instead of dairy. I also wonder about using certified gluten-free supplements. I use citracal for calcium and spring valley for vitamin D. Should I look for different supplements?

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    For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.
    WHAT ABOUT ENZYMES, VACCINES, ETC.?
    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center

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    • hi i have to go for blood test on wednesday 25th, celiacs is new to me i was actually being treated for thrush which was not clearing up and fell upon the celiac thing as i had changed my eating hapits and realised i felt totally different when i did not eat wheat products.  as i have returned to eating gluten after a two week break,    the thrush is flareing up again i have some medication which will see me past the screening date, but until i go gluten free i dont see how the thrush will clear up its becoming uncomfortable  i have all the symptoms back including joint pain constant wind etc, should i go to get the test done early and then contact doctor so i can stop eating gluten to clear up thrush as i feel to have to wait for the results and then wait for endo my become unbearable
    • I know this is an old post but hopefully you will be able to read it anyways. Actually I know for a fact you can get sick from vapors if you have Celiac. I myself have Celiac,at work some ass%$@# security guards were smoking vapours in the security office which is not allowed when I called them out on it they blew the vapors in my face. Soon after my stomach started to hurt and I tried to fight it until the end of my shift then after that I was sick for 2 days. I usually don't get sick just from being around gluten products I have to actually consume it to get sick but this time I did get sick from it and I am not the one that was smoking those vapors which by the way do contain gluten products such as wheat, rye and malt the three  products dangerous for anyone with Celiac. Saying vapors can't effect Celiacs and is just psychological is stupid and ignorant, because it can. 
    • Well I have for years not used beef bullion in recipes as it always either has too much sodium, some other crap in it, or just made me feel sick. Even pacific brand broth I used in moderation seemed to lack flavor. I recently found a alternative in a supplement form of beef bone broth from Jarrow, that does not bother me and does not seem super salty. IT is gluten free, corn free, no added salt, or yeast extracts. Started using it broth bases and I love how I can adjust the flavor with the amount so easy. Find it on amazon or here at thrive market.
      https://www.amazon.com/Jarrow-Formulas-Beyond-Broth-Ounce/dp/B01M5D59FC
      https://thrivemarket.com/p/jarrow-formulas-beyond-bone-broth
      OH first time gluten free orders you get 25% off with http://thrv.me/gf25
    • Welcome to the forum John! Try this search: https://duckduckgo.com/q=new+hampshire+gluten+free+support&t=hg&ia=web Also, we have a "newbie 101" thread for getting started in the Coping With forum section.  This forum is a great place to get information on what to eat and other things that can help.  Think whole foods rather than processed foods.  Foods you cook from scratch yourself are best.  That way you know what's in the food.  Dairy can cause problems for the first several months until some healing happens.  There are lots of gluten-free foods and restaurants now.  But it's best to stick with meats, veggies, nuts and fruits for awhile.  No eating out for 6 months or so.  For a bread sub Mission brand corn tortillas are good and Aldi makes some good gluten-free wraps.  Some people like rice cakes also.  Gluten-free breads are available but should be avoided until you have got some months under your belt. Cross-contamination can happen when somebody uses a knife or spoon to get peanut butter or some condiment out and then you use the same jar of peanut butter.  Little crumbs do matter to the immune system and it will react, sometimes for months.  So if you are sharing such items with others who aren't gluten-free you need to stop.  Wooden spoons and dishes are too difficult to clean adequately.  Metal is usually fine though. It's all a steep learning curve at first but it gets easier in time.  We can help you over the rough spots.  We've hit a few of them ourselves.
    • Sundown Naturals offers a full line of products that are 100% Non-GMO and free of gluten/wheat, dairy/lactose, and artificial flavors! https://www.sundownnaturals.com/products/calciumgummiesplusd500mg/
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