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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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

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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    • At 6. Months I was still recuperating for sure. Still had the dh but less of it, still had chronic pain in my abdomen but less of it, still constipated. I was in the stage of eating gluten-free processed foods, which was too much gluten for me, and keeping my symptoms active. In all actuality my C stopped a few months ago. I've been gluten-free for almost 10 years now.
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    • Sorry to hear you are still suffering so. Have you had a vitamin and mineral panel done?  You should at least have your B12 levels checked. If they are not over 500 then try a subligual B12. That might help a bit.  I take a Stress B supplement but was able to drop the B12 after about 5 years. I know how hard it is to stick to a very regimented schedule as far as sleep goes. I suffer greatly if I don't retire and get up at the same time every day. I am trying to adjust my schedule a bit right now and paying for it. I have been going to sleep at 8pm and getting up at 4am now for a long time which cuts out any real social life.  The last few days I have stayed up till 9:30 or so and gotten up at 5:30 with a headache and generally feeling lousy.  I started getting up very early a few years ago so that I would still get enough sleep even if I have to be somewhere earlier than normal.  Is it possible to adjust your sleep schedule so that if needed you can be somewhere early and not have it mess up your system?  I try to wake at least 3 to 4 hours before I leave the house. It is amazing how much you can get done and how relaxed your beginning day is when you don't have to worry about having to get up early to accomodate an unusually early obligation. Please don't get discouraged. It can take a very long time to heal but for many of us we were ill for years before we finally got diagnosed. I hope you see more progress soon. Be patient with yourself as there are no instant fixes for us, unfortunately.
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