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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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Mgh1213

Test results and advice?

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Hello everyone sorry if this is repetitive but I am a 26 year old female with hyperthyroidism, hypoestrogenism, severely underweight 88lbs  (lost 35 lbs)  just recently last week, found out that I have celiac disease. Panel is as follows: 

IgA - 144

Gliadin AB IGG - >160

Gliadin AbB IGA - >320

TTG IGA - >160 

Could someone tell me if the higher the number, does that necessarily mean it's any worse than the next person with the disease?? I'm really scared about all of this honestly, I'm afraid I don't have the self control to begin to stick to a gluten free diet as all I have eaten my whole life is junk..any advice is helpful. The mental is taking a toll on me. Also, I have not had a menstrual cycle in 5 years (was on Depo birth control shot for 3 yrs, been off for 2 yrs) would this celiac disease have anything to do with the lack of menstration? I have been on Hormone Replacement Therapy over a year now with no results. I have to get back to my old self by before I lose it forever...Thanks for the help. 

 

 

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51 minutes ago, Mgh1213 said:

Hello everyone sorry if this is repetitive but I am a 26 year old female with hyperthyroidism, hypoestrogenism, severely underweight 88lbs  (lost 35 lbs)  just recently last week, found out that I have celiac disease. Panel is as follows: 

IgA - 144

Gliadin AB IGG - >160

Gliadin AbB IGA - >320

TTG IGA - >160 

Could someone tell me if the higher the number, does that necessarily mean it's any worse than the next person with the disease?? I'm really scared about all of this honestly, I'm afraid I don't have the self control to begin to stick to a gluten free diet as all I have eaten my whole life is junk..any advice is helpful. The mental is taking a toll on me. Also, I have not had a menstrual cycle in 5 years (was on Depo birth control shot for 3 yrs, been off for 2 yrs) would this celiac disease have anything to do with the lack of menstration? I have been on Hormone Replacement Therapy over a year now with no results. I have to get back to my old self by before I lose it forever...Thanks for the help. 

 

 

Welcome! 

Chances are your high results are due to celiac disease.  Have you had a gastroenterologist consult?  He/she can refer you to a dietician who can help you with the gluten free diet.  

Celiac disease can wreak havoc on so many different areas of the body.  It just does not affect the GI tract.  There is a good chance that the gluten-free diet will help resolve your hormone issues.  Are you taking medication for your hyper thyroid?  Have you been diagnosed with Graves Disease?   

Higher test result numbers do not necessarily correlate with higher intestinal damage.  Common sense though, seems to indicate that your severe weight loss might mean severe intestinal damage.  Only a GI can confirm that. 

In the meantime, read through our Newbie 101 thread located at the top of the "Coping" section of the forum.  

If you have not met with a GI yet, keep in mind that additional testing for celiac disease requires you to be on a gluten diet.  

Edited by cyclinglady

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Thank you for your response, it really helps to hear from others and I will check out the coping forum that you mentioned. I do have Graves Disease and have been on anti-thyroid medication for 2 years, I just recently started seeing an Endocrinologist (had been seeing normal MD prior) and they said my thyroid levels were good and suggested some gastro tests since I was still having other symptoms. This included the celiac panel that came back positive. They have not referred me to a Gastroenterologist but I assume that is next. I think I will wait to cut out the gluten totally, until further testing is done by the correct specialist. I'm hoping getting this celiac in line, will help the rest of my problems such as the hormones, as you said. Thank you again for taking the time to reach out. 

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I have Hashimoto's Thyroiditis, but my Mom has Graves.  I have been both hyper and hypo.  Had crazy swings for a while while going through menopause and being undiagnosed with celiac disease.  My thyroid calmed down on the gluten-free diet.  My enlargement and nodules went as well.  Not sure if it was the gluten-free diet or simply reducing my immune response (inflammation)  by addressing celiac disease.  Does that make sense?  

In the meantime, you might consider eliminating most dairy.  Celiacs tend to be lactose intolerant --- at least temporarily unless you are genetically predisposed (as are some huge chunk of the world's population).  It could bring you some relief while you complete testing.  You might however, be one of the lucky celiacs who can eat all the dairy they want!  Throw in some veggies  and some healthy fats to help off set your weigh loss.  Your body is probably starving for nutrients right now, so make every bite count.  

 

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Hello and welcome :)

3 hours ago, Mgh1213 said:

I'm really scared about all of this honestly, I'm afraid I don't have the self control to begin to stick to a gluten free diet as all I have eaten my whole life is junk..any advice is helpful. The mental is taking a toll on me.

It can be scary and there's definitely a mental side to dealing with this which is at least as important as the physical. If available to you consider seeking out some counselling to help you process this. It was really useful for me, as were the people on this forum which is a great resource which you should use as much as you need to. 

And, easy to say, try to be optimistic! 

1 hour ago, Mgh1213 said:

I'm hoping getting this celiac in line, will help the rest of my problems

It may be that you've solved a huge health puzzle whilst you're still young and have lots of great years ahead of you, years which will be so much more enjoyable gluten free. Time will help you learn the diet and what at first seems impossible will become the new normal to the point where you won't have to think too much about it. We are an adaptable species and however hard it seems at the outset you will adapt and you will feel better.

Best of luck!

 

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14 hours ago, Mgh1213 said:

Thank you for your response, it really helps to hear from others and I will check out the coping forum that you mentioned. I do have Graves Disease and have been on anti-thyroid medication for 2 years, I just recently started seeing an Endocrinologist (had been seeing normal MD prior) and they said my thyroid levels were good and suggested some gastro tests since I was still having other symptoms. This included the celiac panel that came back positive. They have not referred me to a Gastroenterologist but I assume that is next. I think I will wait to cut out the gluten totally, until further testing is done by the correct specialist. I'm hoping getting this celiac in line, will help the rest of my problems such as the hormones, as you said. Thank you again for taking the time to reach out. 

I can guarantee you that once you get your weight back up to normal, your period will come back.  You sound really malnourished and if your weight gets too low, your periods will stop.  Don't panic.......I was down to about 92-94 pounds at diagnosis so you will be able to heal if you do the diet correctly and don't cheat. Once you start to feel better and your other problems are under control , you will find it easy to stick to the diet. Nothing beats health!  Good luck to you!

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Thank you all so much for the encouraging words and advice, it has been the most help so far! @cyclinglady I have heard of others that have had thryoid issues improved with the gluten-free diet so that definitely makes sense! I think a lot of things will get better once the gluten is gone. And wow! That is a lot to deal with mentally emotionally, etc. going through menopause, and dealing with celiac and thyroid problems. Major props to you for maintaining a positive attittude..that is most admirable and reminds me I can do this!

@Jmg I have considered talking to a counselor, like you said, it would help to talk to someone and I have very grateful to have figured this out while I am still young, I'm ready to take control!

@Gemini Thank you for your encouragement as well, it helps to hear someone has gone through a similar process..doctors have made me feel like I am the only person in the world trying to gain weight so I am excited for the future! Thank you all again. 

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    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
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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. 
    CLASSIC CELIAC DISEASE SYMPTOMS
    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
    Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary. No Connection with Celiac-related Disorders
    Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immunological or Serological Markers
    People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy
    Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption. WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)?
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    Diagnosis of celiac disease can be difficult. 

    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. 
    But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. 
    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