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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?  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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Motherbird7

How Does Celiac Affect Pregnancy?

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I know there is an association between miscarriage and celiac but I don't understand the relationship.

About 5 years ago I suffered my first miscarriage (13 weeks) after 5 healthy pregnancies and 1 happy adoption. I was 36 at the time. I silently worried it had been caused by stress due to my sister's cancer diagnosis and taking care of her 3 babies along with my own.

Within 6 weeks I was unexpectedly pregnant again with my 7th child and carried him successfully to term.

Finally, a year ago this month I again suffered a miscarriage and subsequent hemmorrhage also at 13 weeks. It was during my examination for this event I was diagnosed with Hashimoto's thyroiditis but no one mentioned what might have contributed to the loss.

I am at peace with the number of children we now have and not planning any more, but I guess, with the anniversary here and now knowing I have celiac (3 months gluten free) I am wondering anew what may have happened and if it might be due to celiac in any way. I also have concerns for my son who was born in the middle of the two. Do I need to be especially watchful if I had celiac while pregnant with him?

Thank you, and if this is not the appropriate place to post this topic, please advise and accept my apologies.

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Sounds like you have a wonderful family! I would be wondering the same things. I have read that pregnancy can bring on celiac just because it is hard on your body ( but totally worth it). I too have had 5 healthy babies all natural and am expecting my 6th, but now I know I'm celiac and am gluten free ( over a year now) but I have felt way worse than with my others. I'm so weak and tired and dizzy. I am usually anemic while pregnant. The doctor said he saw scalloping in my endo which means I've been celiac for many years and didn't know. I think something changes once you go gluten-free and become even more sensitive to gluten ( my theory). I used to feel ok eating anything and now it really sends me into fatigue. I don't have any answers for you but I am thrilled to meet another Mom of many children on here! I am really grieved for your losses. So sorry. As far as your kids go I do recommend having genetic testing done. We did- and found one celiac and the risk levels of each one so 4/5 of my kids are gluten-free in and out of house.

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Sounds like you have a wonderful family!... I don't have any answers for you but I am thrilled to meet another Mom of many children on here! I am really grieved for your losses. So sorry. As far as your kids go I do recommend having genetic testing done. We did- and found one celiac and the risk levels of each one so 4/5 of my kids are gluten-free in and out of house.

Thank you faithforlife and congratulations on your pregnancy. My children are wonderful and their Dad has been very supportive. We have had all of them tested...so far all negative but I am suspicious because some have symptoms. As for genetic testing...I am not sure I understand about finding the risk levels of each one? How do you know that? With myself and 2 living sisters celiac and one who passed away from lymphoma/leukemia who also had autoimmune issues(possibly undiagnosed celiac?)...I was told by someone on this forum that was as good or better than genetic testing. Since the celiac testing has been negative I was thinking I would have the whole family be gluten free in the house but relax out? Except that there are thyroid concerns with one of them (myself and both my parents have Hashimoto's)so I am still worried about the best course of action.

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We did the Promethius Celiac Plus test which tells exactly what gene they carry and their risk level. So 3 ofus were only moderate risk, 3 of us were high risk (2 of which had the positive antibodies and positive endo) and one of us is very high risk -no positive antibodies but symptomatic and improved on diet. Doc told me its harder to get a positive antibody reading on younger kids so genetic testing is helpful in deciding the diet. Plus when they have relatives already diagnosed their risk levels are even higher! It was a very difficult decision to Make but some things that the doctors said made a lot of sense and help me go all the way with it. He said that it would be a shame to not teach my kids the rigid diet when they are genetically prone to celiac and their future children will be also. He encouraged me not to pass up this age of opportunity and part of learning the diet is learning it in all different settings and learning to say no. It's been Good. I have felt okay with it because even though my son and I are the first to be diagnosed in all the extended family I have so many relatives and my own father who died young of autoimmune disorders. I feel the diet helps us to make good choices and to say no to a lot of the junk that we would otherwise be eating without thinking about it.

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I know there is an association between miscarriage and celiac but I don't understand the relationship.

About 5 years ago I suffered my first miscarriage (13 weeks) after 5 healthy pregnancies and 1 happy adoption. I was 36 at the time. I silently worried it had been caused by stress due to my sister's cancer diagnosis and taking care of her 3 babies along with my own.

Within 6 weeks I was unexpectedly pregnant again with my 7th child and carried him successfully to term.

Finally, a year ago this month I again suffered a miscarriage and subsequent hemmorrhage also at 13 weeks. It was during my examination for this event I was diagnosed with Hashimoto's thyroiditis but no one mentioned what might have contributed to the loss.

I am at peace with the number of children we now have and not planning any more, but I guess, with the anniversary here and now knowing I have celiac (3 months gluten free) I am wondering anew what may have happened and if it might be due to celiac in any way. I also have concerns for my son who was born in the middle of the two. Do I need to be especially watchful if I had celiac while pregnant with him?

.

Thank you, and if this is not the appropriate place to post this topic, please advise and accept my apologies.

Given your age even without celiac you have a 30-35% chance of miscarriage. Even if you were thirteen weeks at time of diagnosis, how big was the pregnancy measuring and did the physician send the pregnancy tissue for chromosomal analysis? If the chromosomes were abnormal then most likely not related to celiac but the most common reason to have a miscarriage which is chromosomal abnormality that takes place at time sperm and egg meet (random or spontaneous event)

As far as your middle child, having diagnosed celiac or undiagnosed celiac during a pregnancy would not affect that child at this point. Undiagnosed celiac in pregnancy increases risk of small for size baby at birth or risk of intrauterine death.

If you are concerned about your children, you can consider genetic testing for them. Keep in mind 40% of US population will have genetic predisposition to develop celiac but only slightly less then 1% of US population is thought to have celiac (mostly undiagnosed by the way). So, if the children are at risk for developing celiac, you can then check their antibody titers every few years or if they develop symptoms. If they do not carry the genetic predisposition then they never have to worry about being celiac.

Glucose intolerance is a separate animal and at this point the guidelines are not nearly as clear as with celiac.

I hope this was helpful. University of Chicago has an excellent website especially on the topic of genetic testing.

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    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
    • I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.   Yes, I certainly need to keep a food diary. Thanks again for the advice.
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    • Hi Isabel, Your body needs nutrients to grow.  Nutrients not absorbed well when we have celiac disease damage in our guts.   But, if you do a good job of avoiding gluten, the gut damage should heal and you will be able to absorb nutrients again. The thing to remember is celiac disease is an immune system reaction.  Immune reactions are very sensitive and just a tiny amount of gluten can get them going.   And they can last for months.  So it;s very important to avoid all gluten all the time, to keep the immune reaction down.  Keeping the immune reaction down keeps the damage down, and the healing can keep up. You may start to grow more if you can absorb nutrients better.  Some extra vitamin pills might be a good idea.  Your doctor should know.  
    • Thank you Gail for your response. Of course one should be mindful of the possibility of food allergies but I don't think that's the case with my current situations. Save for gluten containing product, everything I eat now I used to eat before with no reaction whatsoever. I think my issue is more likely to be deficiency in minerals and such.
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