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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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Pre-eclampsia & Celiac

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With my daughter, I developed severe pre-eclampsia & HELLP at the end of the pregnancy. She is about to turn 4. One thing I have learned since is that many people who develop pre-e have underlying disorders since as blood-clotting disorders or auto-immune issues. I met with a high-risk OB last year to get tested for underlying disorders, and everything came back negative.

Now, 7 months after those tests, I randomly find out I have Celiac. I didn't think I had anything, went in for my physical, mentioned I was having reflux....find out a week later I have Celiac...I was shocked to say the least.

Now that I know pre-e is connected with AI issues, and Celiac is an AI, I am wondering if this is the connection?

Now that I discovered this, I am more terrified than ever to get pregnant again, because now that I know I have an AI that the pre-e/HELLP will come back.

Are there any other on here who have gone through pre-e and/or HELLP?

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I've been pregnant three times and lost one child (Jibril) at 17 weeks. I never had pre-eclampsia, but I'm positive that my loss was related to undiagnosed hypothyroidism and celiac disease. The tricky thing is that a lot of OB/GYNs have NO CLUE about autoimmune disorders (which is ironic, since pregnancy can be one of the triggers). They think you can run a bunch of tests one time and that gives you all the answers... which is just not true. Disorders like lupus and celiac disease can be very complicated and take years to diagnose!

One book I can recommend is the "The Autoimmune Connection" by Rita Baron-Faust and Jill Buyon. It covers quite a few disorders and how they affect a woman through her lifetime (including fertility and pregnancy). It's definitely in your best interest to educate yourself and be proactive.

The more I learn, the more I think I'm done having kids. Maybe in three or four years my health will be more stable and I'll feel like I can give it another try... it IS a huge risk. Not just to the baby, but to my own health too :( If you stay on the gluten-free diet, celiac disease shouldn't complicate any future pregnancies. The problem is that AI disorders tend to cluster together... and you never know when a new one is going to rear it's ugly head.

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I had pre-eclampsia, this was many years ago, and no one ever talked to me about anything related to it. I was very ill and hospitalized for it.

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I had pre-eclampsia with my first child, who then was IUGR.

I also had hyperemesis with all three complete pregnancies (1 miscarriage). I was under the care of a high-risk OBGYN for all 3 pregnancies because of Hashimoto's (had had for 10 years). With the second and third, I consented to take medication for the hyperemesis, although about 1/4 the recommended dose.

With my second and third pregnancies, I did NOT have pre-eclampsia. I wasn't gluten-free (had never heard of gluten) until my youngest was 4, but I was instinctively gluten-lite for all pregnancies (lots and lots of fruit, eggs,veggies, and rice--that's what stayed down, imagine that!) But the stupid doctors kept telling me to eat crackers so I would have something in my stomach...

Hope that helps!

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thank you.

My daughter also had IUGR..she was born at 39 weeks, but only weighed 4 lbs, 8 oz. thankfully, she was perfectly healthy, just small =)

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I had pre-e and HELLP syndrome with my daughter and she was born at 33 weeks weighing only 2 lbs 12oz. I did not know that I had Celiac at that time. I was scared to death once I was pregnant again this time. All of my tests also came back negative for under lying disorders. I am now 34 weeks and so far so good! BP is behaving itself! I do have GD this time but I will take that over the pre-e and HELLP! My mfm said it def could be the AI that had caused it.

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I have 3 children and the pre-eclampsia has gotten worse with each pregnancy. I delivered my first 2 children (now aged 18 & 17) at 39 weeks. My last child (aged 5 ) was born at 29 weeks weighing 958 grams. Both of us were at deaths door. He was IUGR and required 11 weeks in a NICU.

I think the reason my first 2 pregnancies were able to last so long was that my then DH was an IBS sufferer and we didnt eat a lot of gluten products. I was almost 15 yrs older with my last pregnancy and had been sick for years before hand with what I suspect were many miscarriages.

I belong to a pre-eclampsia survivor forum and a lot of the women there suffer from infertility and well as delivering pre term. Many have lost children.

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I am recently diagnosed celiac disease. I had pre-eclampsia with my son (first and only pregnancy) three years ago. The ONLY symptom I had was a very high protein level in my urine. I went on bedrest at 28 weeks with my doctors hoping I would make it to 30 or 32 weeks. I made it to one week PAST my due date and delivered a totally healthy 8 pounds, 14 ounce baby boy. Six weeks after delivery, zero protein in my urine.

My OB/GYN indicated there is about a 5% chance of any woman developing pre-eclampsia. But, now that I have had it with one pregnancy, he said there was a very high likelihoood of having it again. (I'm thinking he said 50% or closer to 75% but I could be wrong.). I'm not willing to risk it with regards to another pregnancy. We are adopting a baby girl from China (should travel next year at this time).

I had no idea there was even a possibility of preeclampsia and celiac disease having any kind of potential connection.

Thank you for starting this thread. I'm fascinated!

Nicole

I have 3 children and the pre-eclampsia has gotten worse with each pregnancy.

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I am recently diagnosed celiac disease. I had pre-eclampsia with my son (first and only pregnancy) three years ago. The ONLY symptom I had was a very high protein level in my urine. I went on bedrest at 28 weeks with my doctors hoping I would make it to 30 or 32 weeks. I made it to one week PAST my due date and delivered a totally healthy 8 pounds, 14 ounce baby boy. Six weeks after delivery, zero protein in my urine.

My OB/GYN indicated there is about a 5% chance of any woman developing pre-eclampsia. But, now that I have had it with one pregnancy, he said there was a very high likelihoood of having it again. (I'm thinking he said 50% or closer to 75% but I could be wrong.). I'm not willing to risk it with regards to another pregnancy. We are adopting a baby girl from China (should travel next year at this time).

I had no idea there was even a possibility of preeclampsia and celiac disease having any kind of potential connection.

Thank you for starting this thread. I'm fascinated!

Nicole

Nicole, i am in the same boat. I have already gotten info on Chinese adoption, but have to start the paperwork. I would love to hear about your experience. How long ago did you submit paperwork?

Also, did you have to tell them you have Celiac...I know they want to know some very detailed medical info from the parents. So, i wonder..if we don't get the biopsy then we are not "diagnosed", would that make a difference?

Good luck!!!

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Yes, they do have very specific medical info. they want. Your doctor has to say that you do not have any medical issues that would negatively impact your ability to parent. You are already a parent, right! I do agree that if you have not had a biopsy, then you do not have a true diagnosis which would need to be documented on the paperwork. And, even if you did, we are talking about a food intolerance here...

I emailed you privately as our experience is different than most because my husband is Chinese. We have a "shorter" wait (2 years, vs. 3-5 if he were not Chinese).

Nicole

Nicole, i am in the same boat. I have already gotten info on Chinese adoption, but have to start the paperwork. I would love to hear about your experience. How long ago did you submit paperwork?

Also, did you have to tell them you have Celiac...I know they want to know some very detailed medical info from the parents. So, i wonder..if we don't get the biopsy then we are not "diagnosed", would that make a difference?

Good luck!!!

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I went through the same thing with both of my girls. I was diagnosed with Celiac one year ago. I have had it for over 10 years and I thank God that I didn"t have any miscariages. I did not have the classic symtoms of Celiac. I was always iron defficient most of my life. When I was pregnant with my first daughter, six years ago, I was taking four iron pills a day and it did not help. I had pre-e at the end and i was induced. When I was preganant with my second, I developed high blood pressure and pre-e alot sooner, but i carried to full term. The only difference was that my second weighed only 5'14 compared to my first at 8'3. My second was also a twin that I lost in the very beginning. I truly believe that if I would have been diagnosed with Celiac before my preganancies, I would have not had thepre-e. I had a tubal done after my second because I was afraid to get pregnant again. Now that we know what was wrong, I wish that I could have tried one more time. If someone thinks they have Celiac, just ask your doc for the simple bloodtest needed to diagnose it, even if they fight you on it. If I would have known about Celiac, I would have prevented alot of damage to my body. Hope this helps and God bless!!

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Hi,

Thought I'd add my experience: I developed HELLP syndrome and my daughter was born at 34 weeks (4 lb). This was before I was diagnosed as celiac... I am not a doctor, but have been reading up on possible connections. My daughter is now 4 and she's amazing. I'm gluten free and feel great. So all in all a great outcome!

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Hi,

Thought I'd add my experience: I developed HELLP syndrome and my daughter was born at 34 weeks (4 lb). This was before I was diagnosed as celiac... I am not a doctor, but have been reading up on possible connections. My daughter is now 4 and she's amazing. I'm gluten free and feel great. So all in all a great outcome!

So Buendia,

i am just curious, being that you have also been through HELLP...are you planning to go for it again?

I am still on the fence.

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So Buendia,

i am just curious, being that you have also been through HELLP...are you planning to go for it again?

I am still on the fence.

Hi Anne,

I'm sorry to hijack this conversation, but I think I may have Celiac after a long web search and thinking and trying things. I finally searched "celiac" and "pre-eclampsia" and go this thread. Post after post said "HELLP" and "pre-e." I'm a HELLP survivor in my first pregnancy and my second was a mess, but no HELLP, thankfully.

Interestingly, I gained so much water weight while pregnant that neither baby got very big and even though I looked like I was gaining (rapidly some months), I was really swelling. I haven't been diagnosed with an AI issue, but I'm really wondering if celiac is the underlying issue.

After HELLP, I moved, so I had to get a new OB-GYN. I found one who specialized in high-risk pregnancies, so she was not phased by much. She was obessive compulsive and had me testing constantly. I could tell you my BP and platelet counts almost from 20 weeks on.

I developed HELLP at the end of my first pregnancy, so research shows that if you do get it again (and nothing says you will), you get it at the same time or later during the next pregnancy. So, I delivered early and avoided it. Platelets weren't that great anyway and I was starting to spill protein into my urine.

It's really a hard decision to make after HELLP. I went in with so much more knowledge and awareness. Good luck with your decision!

I can't wait to explore the rest of the board. I feel like I've found people who understand my weird stomach and reading all these Pre-E and HELLP stories just makes so much sense.

CJ

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Hi, I'm a dietitian with an autoimmune condition and previous work experience with prenatal health. I've been researching why the advice I gave when I was working helped so many women at the time worked - but isn't in the mainstream medical treatment yet. Increasing magnesium rich foods such as beans, nuts, and seeds helped women that had a history of preeclampsia or high blood pressure to have a normal pregnancy. 

In a nut shell - oxidative stress causes the placenta to increase flow of calcium. Too much calcium can cause other cellular reactions and fluid changes. And oxidative stress can be caused by gluten exposure when there is an underlying celiac autoimmune condition or probably other autoimmune conditions.

Re oxidative stress, and calcium channels in the placenta: Reactive Oxygen Species Inhibit Polycystin-2 (TRPP2) Cation Channel Activity In Term Human Syncytiotrophoblast

Re Celiac Sprue and oxidative stress, "long chain omega 3 fatty acids, plant flavonoids and carotenoids" were suggested as antioxidants that may help reduce the "oxidative stress, gene expression & production of inflammatory mediators":  Celiac disease, inflammation and oxidative damage: a nutrigenetic approach.   Carotenoids include beta-carotene from carrots. Orange, red and dark green fruits and vegetables are generally good sources of carotenoids and plant flavonoids are also found in a variety of colorful fruits and vegetables. Omega 3 fatty acids are found in fish oil supplements or salmon, tuna, sardines - limit as a mercury source however during pregnancy or child bearing years. Vegetarian sources of a precursor omega 3 fat include flax seed meal (ground is digestible, whole flax seeds aren't really), walnuts, and hemp seed kernels.

Sesame seeds, or tahini, sesame paste, has been shown in sports research to help reduce oxidative stress. The trial subjects ate 2 tablespoons per day of the seeds. Effects of Sesame (Sesamum indicum L.) Supplementation on Creatine Kinase, Lactate Dehydrogenase, Oxidative Stress Markers, and Aerobic Capacity in Semi-Professional Soccer Players.

Dark chocolate has also been shown to be beneficial antioxidant source.

Best wishes to any Celiac sufferers - I avoid gluten due to intolerance, initially for fibromyalgia like symptoms, and later autoimmune thyroid  antibodies were found but not antibodies for Celiac Sprue.

A dietitian can help work out more balanced diets when major food items have to be excluded for health purposes. A professional organization offers a search feature for helping to find a Registered Dietitian eatright.org/find-an-expert

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Jen deNutrients, your advice is basically good.

Due to loss of nutrients in food today, even eating nutrient-dense foods as you suggested might likely not be enough, at least for some women. Therefore, the resort to supplements, such as magnesium, is probably wise and most helpful in addition to eating a healthy non-gmo diet.

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    admin
    WHAT IS CELIAC DISEASE?
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    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. 

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    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
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    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. 

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    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