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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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benjamin1993

Been gluten-free for 4 weeks - ate gluten two days ago and feel like I have the flu?

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Hey guys - For the last few years I've dealt with energy issues, emotional lethargy, grogginess, and recently OCD, so I decided to go gluten-free 4 weeks ago. After a week of dizzy spells, irritability and insane cravings it felt like a veil had been lifted from me - I felt lighter on my feet, endlessly energetic, and most of all, so very happy. 

Two days ago, I ate a LOT of gluten - a whole plate of breaded chicken thinkig it was battered in corn starch (newb issues, I guess) and within 30 minutes it felt like I had been hit by a truck: extreme fatigue, sudden depression, sense of hopelessness. The next morning was worse, and today I have felt no better and am experiencing swollen eyes and sinusitis.

Before going gluten-free I had never had a reaction like this. Can anybody relate? 

 

 

 

 

Edited by benjamin1993

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Welcome.  You might consider staying on gluten and seeing your doctor for a celiac blood test panel.  You need to be consuming gluten for several  weeks prior to the blood draw otherwise the tests can be invalid.   You could have celiac disease or a gluten sensitivity.   The only way to know for sure is to get tested as there are over 200 symptoms attributed to celiac disease and those can overlap with other illnesses.   Best to rule out celiac disease. 

Learn more: 

http://www.cureceliacdisease.org/screening/

Celiac disease symptoms are like a chameleon -- always changing.  

 

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Yes! Being gluten-free for a significant amount of time, and having a gluten exposure, will make your body have a greater reaction to gluten. At least for many if not most of us. I'm not sure of the logistics, but there is a reason for it as well. Take it easy, eat simple whole foods, bone broth if possible, lots of water.... hopefully you will feel better very soon.

But cyclinglady was right. You probably should actually stay on gluten until you get tested for celiac disease so you know for certain this is your issue. You have found a great community here to help you. Welcome!

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I agree that you should keep eating gluten and get tested if you can.  The reason for the increase in symptoms after being gluten free is the antibodies flaring in response to you injesting what your body doesn't want you to consuming.  Your body is letting you know in no uncertain terms that gluten is not something it wants.  You don't have to consume a lot of gluten for testing. A couple slices of bread worth is enough.  There is a chance with most of your issues sounding like they are neuro related for a false negative. After testing you should IMHO go back to being strictly gluten free no matter what the results. Keep in mind that many doctors consider celiac to be a solely GI problem and won't test if you don't have gastro issues.  Sounds like your body is giving you the answer but a formal diagnosis can be helpful with family members and freinds taking the condition as seriously as you need to take it.

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Hi Benjamin and welcome :)

You've found a good site. Everyone above has given you good advice I just wanted to reinforce this point from Ravenwoodglass:

15 minutes ago, ravenwoodglass said:

After testing you should IMHO go back to being strictly gluten free no matter what the results.

Some people (like me), test negative for celiac but still have a problem with gluten. This is called Non Celiac Gluten Sensitivity and is not a well known or understood condition. Suffice to say if you do test negative, you shouldn't assume that gluten is fine for you, it may well not be.

Best of luck!

Matt

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Thanks for the thoughtful replies, everybody!  I want to highlight that it's just been almost 4 weeks since I've eliminated gluten (and I've been very strict about it) - prior, I could eat gluten with no issues that like this. A sandwich would rob me of energy, but not in a way I could associate with having eaten the sandwich. How insane that four weeks off of gluten could produce this new exposure reaction for me  

1.5 weeks into being gluten-free I felt well enough to taper off my OCD meds and so, while I haven had had any noticible negative reactions, SSRI withdrawals can resemble gluten exposure (although the symptoms I don't think are often delayed) - so I wonder if a weird mix is happening there. 

And also... I'm mostly just stunned that my body could react so extremely now to what it used to take with relative ease a mere 26ish days ago. It's good to know this is an actual thing and not me being dramatic about my new eating regimen. :) 

It literally feels like death and like I'll never getting through it - but I'm staying reasonable about it and woke up this morning feeling less terrible (although I've had to make several trips to the bathroom - tmi I know). 

Thanks so much!

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1 hour ago, benjamin1993 said:

Thanks for the thoughtful replies, everybody!  I want to highlight that it's just been almost 4 weeks since I've eliminated gluten (and I've been very strict about it) - prior, I could eat gluten with no issues that like this. A sandwich would rob me of energy, but not in a way I could associate with having eaten the sandwich. How insane that four weeks off of gluten could produce this new exposure reaction for me  

1.5 weeks into being gluten-free I felt well enough to taper off my OCD meds and so, while I haven had had any noticible negative reactions, SSRI withdrawals can resemble gluten exposure (although the symptoms I don't think are often delayed) - so I wonder if a weird mix is happening there. 

And also... I'm mostly just stunned that my body could react so extremely now to what it used to take with relative ease a mere 26ish days ago. It's good to know this is an actual thing and not me being dramatic about my new eating regimen. :) 

It literally feels like death and like I'll never getting through it - but I'm staying reasonable about it and woke up this morning feeling less terrible (although I've had to make several trips to the bathroom - tmi I know). 

Thanks so much!

Feel free to discuss ANYTHING here. Nothing is tmi! We have heard it all. And you can be as dramatic as you like, we will still be here for you. 

SSRI's are a bear to come off of. I got off one and for MONTHS I had the zaps in my brain. I must say I did not do it slowly or carefully and put myself in the throngs of withdrawal. Did you get off your med with the help of a doctor? (It's best to do so.)

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2 hours ago, Victoria1234 said:

Feel free to discuss ANYTHING here. Nothing is tmi! We have heard it all. And you can be as dramatic as you like, we will still be here for you. 

SSRI's are a bear to come off of. I got off one and for MONTHS I had the zaps in my brain. I must say I did not do it slowly or carefully and put myself in the throngs of withdrawal. Did you get off your med with the help of a doctor? (It's best to do so.)

Hey, yes I did! I haven't had a single associated symptom that I know of, minus feeling sleepy for one day and having this weird washy sound in my head that has since disappeared. Thank you so much for your kind openness!

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10 minutes ago, benjamin1993 said:

And yes, I tapered with the help of a doctor. 

Good to hear you tapered with your doctors assistance. Many drugs are very dangerous to stop suddenly and not just in terms of the withdrawl.  I tapered off all meds also at diagnosis and have only had to add back in my 'as needed' Alprazolam. I take that for something not celiac related though.

Things can be up and down for a bit when we go gluten free. Hang in there.

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Yes I can relate. I describe  the feeling as having run a marathon and  being hit by a Mac truck just after crossing the finish line. A fatigue, exhaustation, annihilation type experience. Lol

 welcome and the veterans above gave excellent advice. Best Wishes on the journey of testing and healing. 

We're here.

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What was your gluten free diet like? I wonder if, when you were gluten-free, you went more whole food, less processed food? Or did you continue to eat processed food that was just gluten free? One reason I ask is that I have cut way back on grains and processed foods like gluten-free bread, but occasionally allow myself a treat which is a gluten-free biscuit southern-style from the gluten-free bakery nearby. There is no better sleeping pill in the world! I am knocked out. I’m not saying you’re not Celiac, I’m just curious what your diet was replaced with. You’re definitely reacting to something, and in a way you’re lucky to know what that is!

Plumbago

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    admin
    WHAT IS CELIAC DISEASE?
    Celiac disease is an autoimmune condition that affects around 1% of the population. People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.
    Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases.
    Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. 
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    Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others.
    LESS OBVIOUS SYMPTOMS
    Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important.
    NO SYMPTOMS
    Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. 

    CELIAC DISEASE VS. GLUTEN INTOLERANCE
    Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? 
    CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS)
    Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there.

    There are four main differences between celiac disease and non-celiac gluten sensitivity:
    No Hereditary Link in NCGS
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    Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. 
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    Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult.  Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis.
    TESTING
    There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.
    Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products.

    BIOPSY
    Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

    WHY A GLUTEN-FREE DIET?
    Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 
    A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.
    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

    Jefferson Adams
    Celiac.com 04/17/2018 - Could the holy grail of gluten-free food lie in special strains of wheat that lack “bad glutens” that trigger the celiac disease, but include the “good glutens” that make bread and other products chewy, spongey and delicious? Such products would include all of the good things about wheat, but none of the bad things that might trigger celiac disease.
    A team of researchers in Spain is creating strains of wheat that lack the “bad glutens” that trigger the autoimmune disorder celiac disease. The team, based at the Institute for Sustainable Agriculture in Cordoba, Spain, is making use of the new and highly effective CRISPR gene editing to eliminate the majority of the gliadins in wheat.
    Gliadins are the gluten proteins that trigger the majority of symptoms for people with celiac disease.
    As part of their efforts, the team has conducted a small study on 20 people with “gluten sensitivity.” That study showed that test subjects can tolerate bread made with this special wheat, says team member Francisco Barro. However, the team has yet to publish the results.
    Clearly, more comprehensive testing would be needed to determine if such a product is safely tolerated by people with celiac disease. Still, with these efforts, along with efforts to develop vaccines, enzymes, and other treatments making steady progress, we are living in exciting times for people with celiac disease.
    It is entirely conceivable that in the not-so-distant future we will see safe, viable treatments for celiac disease that do not require a strict gluten-free diet.
    Read more at Digitaltrends.com , and at Newscientist.com