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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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OleMissLass

Very Nervous About Trying To Get Pregnant

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I have been on a gluten-free diet for 3 years though I have not been very faithful to the program in the past few months. I am not immediately sensitive to gluten (delayed reaction - usually 2 days) so it's easy to dismiss the consequences at times. I also have hypothyroidism and migraines and am on medication to treat both. Neither of my doctors is a specialist on celiac (I live in a small town) so they don't give me very specific advice. I learn everything from books & the internet.

My husband and I want to start trying to get pregnant, but I am very nervous about this since the celiac and hypothyroidism both pose dangers to the fetus and can cause miscarriage. I'm 36 so I don't feel we can wait much longer. I've been back on the gluten-free diet for the past few weeks and have worked to be careful about what I eat. How long should I wait before going off the birth control? Does anyone have suggestions for making pregnancy successful while on a gluten-free diet? I would really appreciate any advice!

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The first part you obviously know, that you must adhere to the diet. The little cheats and laxness here and there do add up and you are sabotaging yourself.

Next I would go to my gp and ask to have all my nutrient levels checked. I don't know if you did this when you first went gluten free, but as celiacs we tend to be malabsorptive and can have major deficiencies. Many of these, if not supplemented, can remain even after we have recovered. You should have vitamin levels checked, especially A, B's, folate, D and minerals like potassium, iron, zinc, copper. Supplement as necessary for any deficiencies.

Apart from these, you should be good to go. :) Plenty of exercise, nutritious whole foods and all the usual stuff.

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I have been on a gluten-free diet for 3 years though I have not been very faithful to the program in the past few months. I am not immediately sensitive to gluten (delayed reaction - usually 2 days) so it's easy to dismiss the consequences at times. I also have hypothyroidism and migraines and am on medication to treat both. Neither of my doctors is a specialist on celiac (I live in a small town) so they don't give me very specific advice. I learn everything from books & the internet.

My husband and I want to start trying to get pregnant, but I am very nervous about this since the celiac and hypothyroidism both pose dangers to the fetus and can cause miscarriage. I'm 36 so I don't feel we can wait much longer. I've been back on the gluten-free diet for the past few weeks and have worked to be careful about what I eat. How long should I wait before going off the birth control? Does anyone have suggestions for making pregnancy successful while on a gluten-free diet? I would really appreciate any advice!

Wow, this is exactly what I've been thinking. I've had a miscarriage and an ectopic, and lots of "chemical" pregnancies since trying for a baby the past six years. Then I got diagnosed two months ago with celiac, which by then was a GREAT thing to hear, since up until that point all the testing had just shown "unexplained infertility." It's nice to have a reason for it.

But I'm frankly terrified to start trying again -- and I just turned 35, so it's all ticking clocks with me. I'm impressed you've been gluten-free for 3 years and allowed yourself to heal up before getting into the fertility stuff -- that takes a lot of patience. I'm giving myself just one year of healing time, so I'll be starting again at your point next year.

I'm seeing the OB-GYN next week to talk about this and hoping to get into the Mayo Clinic to get a better workup done at some point (I'm somewhat in the sticks). Mushroom is right -- getting a checkup on all your vitals and making sure you're on the right prenatals, etc. is a good first step.

After that, I think it's just about courage, honestly. It sounds like a lot of women here were able to start conceiving after about two years gluten-free. You should be OK, since you've left in some buffer time to allow for glutenings.

I think getting your tTg levels checked might be good, since I think I saw a study recently that said tTg may be involved in miscarriages.

Please come back and post with your experiences as you go forward -- I for one would appreciate hearing how it goes. Good luck!

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I was wheat free, didn't know about gluten-free problems then. I did have a number of early miscarriages, but wanted to say I had my 2 lovelies at 37 and 39.

I agree with the others,, get tested to check no major issues, have some suppliements, make healthy food choices. I found it comforting to keep my tummy warm and not have very cold drinks early on, but not sure what evidence there is on that.

For me, I had to get my stress levels down, it seemed to throw out my hormones, along with the gluten stuff.

Take it easy on yourselves, be kind to each other keep a bit of romance. Lots of us have kids, it is often possible. From what I recall,, the research shows. minimal difference in outcomes once you are diagnosed and eating gluten-free

Good luck both of you ( and other halves of course).

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I was wheat free, didn't know about gluten-free problems then. I did have a number of early miscarriages, but wanted to say I had my 2 lovelies at 37 and 39.

Thanks -- very comforting to know that there's some hope for us starting fresh while on the wrong side of 35. :D

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Thanks to everyone who replied - these positive messages are definitely what I needed! I've been back on a strict gluten-free diet for a few weeks now and it's been easier to stay faithful since I have a worthwhile end goal (besides my longterm health, of course!). I just made an appointment with my endocrinologist to have my thyroid levels rechecked and a nutrient test to make sure my body is fully ready to support a pregnancy. Fortunately, my thyroxin levels have been pretty solid for the past few years and I have taken B-12 shots for about 2 years along with multivitamins so I'm hopeful I won't have issues there.

Pregnancy is already such a stressful event and having these health issues certainly makes the stakes higher. But I agree with you that I need to do my best to lower the stress and to relax and enjoy my free time. Since I'm in the middle of my dissertation and plan to start looking for a job this fall I don't know if that will be possible, but I will certainly try and will ask my husband to help find ways for us both to de-stress.

I've bought an ovulation kit and have been reading extensively on fertility, so I feel prepared to start and will keep my fingers crossed that it doesn't take us a long time to conceive. Thanks for your supportive words!

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I had my children at age 35 and 37, before my diagnosis. I had already started having uncontrolled diarrhea before I got pregnant with the first one so I was pretty ill already. I think that the pregnancies and nursing may have caused some of the symptoms to improve. My message is that even untreated, I managed to have two healthy pregnancies and produced two wonderful children. You are way ahead of the game with a diagnosis and gluten-free diet. Good luck and best wishes to you and your husband.

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I have to say reading your posts have certainly eased my mind a good deal! I am gluten intolerant but have a great deal of inflammation in my gut so am going both gluten free and dairy free and have been so for about a month. On top of this, I have Type 1 Diabetes and PCOS so definitely have an uphill battle ahead of me! My husband and I have just started trying and while I have a reproductive endocrinologist who is helping me along the way, the gut issues have caused me a little worry in terms of both getting pregnant and carrying to term. I am thankful for posts like these because they certainly help when I am feeling discouraged!!

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I have had symptoms of celiac for 30 years during which I had 5 whole, healthy, children, albeit I had an early misscarriage before the five. I am happy the Lord gave me all five of them. I didn't know I had celiac disease until recently. Watch your nutrient level and get some good supplements to optimize for the little ones. I hope you will do well and enjoy the blessings which children bring.

Diana

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Well, Monday morning I went in for a routine blood work and monitoring for what I thought was my AF...and they called me a couple hours later and told me I was pregnant! I couldn't believe it! Now, they are going to check my HCG levels tomorrow to see if they are doubling appropriately.

After everything I have read on here and because of my pre existing diabetes, I am extremely nervous about miscarriages! I have always read that a symptom for many people during pregnancy is C - but since I am more prone to D due to my gut, I was wondering if people here had more C or D due to these issues?

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Hey, congratulations. That was short work :D I hope you have smooth pregnancy.

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Fantastic news, congratulations.

Pregnancy does all sorts of weird things to the body, most of which you don't know about before :). For me, I tend to get D more usually. I got some of that while pregnant, but also had C while pregnant, just 2 to 3 times each pregnancy.

If you have fasting blood sugar tested, check that the drink they plan to give you is gluten-free, some people here have had problems with them. Find out in advance, so you can agree an alternative.

The first few weeks can be very tiring, try and rest as much as you can.

Fabulous news.

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Thanks so much! It just feels good to say it right now! Although I know I'm not out of the woods yet. I have my second HCG blood draw tomorrow and when I have the results of that, I will feel better. Until then, I consider it up in the air (despite the positive blood test).

I am already tired all the time but yet when I go to bed I have a hard time sleeping. Very frustrating!

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Wow, this is exactly what I've been thinking. I've had a miscarriage and an ectopic, and lots of "chemical" pregnancies since trying for a baby the past six years. Then I got diagnosed two months ago with celiac, which by then was a GREAT thing to hear, since up until that point all the testing had just shown "unexplained infertility." It's nice to have a reason for it.

But I'm frankly terrified to start trying again -- and I just turned 35, so it's all ticking clocks with me. I'm impressed you've been gluten-free for 3 years and allowed yourself to heal up before getting into the fertility stuff -- that takes a lot of patience. I'm giving myself just one year of healing time, so I'll be starting again at your point next year.

I'm seeing the OB-GYN next week to talk about this and hoping to get into the Mayo Clinic to get a better workup done at some point (I'm somewhat in the sticks). Mushroom is right -- getting a checkup on all your vitals and making sure you're on the right prenatals, etc. is a good first step.

After that, I think it's just about courage, honestly. It sounds like a lot of women here were able to start conceiving after about two years gluten-free. You should be OK, since you've left in some buffer time to allow for glutenings.

I think getting your tTg levels checked might be good, since I think I saw a study recently that said tTg may be involved in miscarriages.

Please come back and post with your experiences as you go forward -- I for one would appreciate hearing how it goes. Good luck!

New member here and I don't want to hijack the thead, but the mention of an ectopic pregancy caught my eye.

 

I was diagnosed with a gluten sensitivity in July 2012 and fully adopted a gluten free diet in September. I did not get an endoscopy so I'm not sure about any damage caused.

 

I had an ectopic pregnancy in December and am still shocked that I have no answers as to why it happened. I can't help but feel like my gluten intolerance could have something to do with it (among other possibilities), but haven't discussed with my doctor. After reading this thread though I think my next step will be to get my vitamin levels checked.

 

Were you given any information that celiac/gluten intolerance could be a possible cause?

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I found out today that I am pregnant, though only very early, about 2 weeks.  I'll definitely be sticking to a fully gluten-free diet and will be alerting my doctor to some of the complications that can arise from a pregnancy in someone with celiac. But at the very least, I know I can get pregnant and that's a good sign for someone who's had this condition as long as I have.

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CONGRATULATIONS Take it easy on yourself, wishing you a happy and successful pregnancy :)

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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)?
    IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS.

    To add more confusion, many cases of IBS are, in fact, celiac disease in disguise.

    That said, people with IBS generally react to more than just wheat. People with NCGS generally react to wheat and not to other things, but that’s not always the case. Doctors generally try to rule out celiac disease before making a diagnosis of IBS or NCGS. 
    Crohn’s Disease and celiac disease share many common symptoms, though causes are different.  In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis.  
    Crohn’s treatment consists of changes to diet and possible surgery.  Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection.
    Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome? Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise CELIAC DISEASE DIAGNOSIS
    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