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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 FREE Celiac.com email alerts   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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Celiac And Miscarriages
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5 posts in this topic

I was diagnosed with Celiac Disease six or seven years ago.  I've never followed the diet for more than week at a time.

I am now 25 years old and have been in a committed relationship for two years.

About 3 months ago I found out I was pregnant.  My boyfriend and I were shocked.  We weren't trying to get pregnant.  I was actually quite devastated.  Financially we were not ready for a baby.  But as time went on we began increasingly excited.

I went and had a "professional" pregnancy test done by my primary care physician, who was the one who diagnosed me with Celiac, and he never said one thing about sticking to the Gluten Free diet to have a successful, healthy pregnancy/baby.  He was also aware that I was not following the gluten-free diet.

On August 28th my boyfriend, mother and I went for my first OBGYN appointment and ultra sound.  The doctor had informed me that I had miscarried around the 6 week mark (I was supposed to be 10+ weeks at that point). I had even asked her if it was my fault that I had miscarried because of not following the gluten-free diet and she had said no.

A week or so ago I saw something on the web about woman with untreated Celiac's having a higher percentage of miscarriages or infertility.   

 

Has anyone else had problems with this?  I don't know why my doctor or the OBGYN wouldn't have said anything to me.  If I had known that the untreated Celiac could cause a miscarriage I would have stuck to the diet like it was my job.  If anyone could add some input that'd be great.  I've been driving myself crazy the last few weeks about this.

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I'm sorry you lost the baby but I am going to blunt.

 

This applies to you as you are the "undiagnosed" Celiac.  In this case, they assume that a diagnosed Celiac would be following the gluten-free diet.

 

http://www.cureceliacdisease.org/archives/faq/will-exposure-to-gluten-during-pregnancy-cause-any-problems-with-the-baby

 

http://www.cureceliacdisease.org/archives/faq/why-does-celiac-disease-lead-to-fertility-problems-in-women-with-undiagnosed-celiac-disease

 

 

 

I am going to say that I think  you are not ready to have a baby.  Until you are able to take care of your basic health needs, how can you take care of another person's needs?  Educate yourself about your disease.  It has very real health risks going untreated. 

 

http://www.cureceliacdisease.org/archives/faq/what-do-people-with-celiac-disease-die-of-to-increase-the-mortality-rate

 

http://www.cureceliacdisease.org/archives/faq/what-are-some-of-the-symptoms-of-celiac-disease

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I have experienced a miscarriage.  Sorry, for your loss and I wish you and yours wellness in the future.

 

I have sent you a pm about it and would be willing to share experiences if you care to after that.

 

D

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Yep, I've lost babies also.

I am so sorry for your loss. No matter how you might have felt when you first found out you were pregnant, it is clear by your post that that baby was already loved. Take care and be gentle on yourself now as you heal. 

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  I had to think about this post all afternoon before I answered you.

 

I am so very sorry you lost your baby.  :(

That is a tragedy and a sadness that is beyond description.

I know.  lost 5 because of undiagnosed celiac.

 

But that was 20 years ago, when I did not know I had celiac.
You know you have celiac.

was not DXEd until my 50's after I became so ill, so debilitated and stricken with

pain and suffering dozens of symptoms that I was dying. I was grateful to know what I had
and how to treat it so I could stay alive.
Really... a G F diet? that's it! wow.

 

You state you have been diagnosed with celiac for many years so, honestly, hon you should have been following the diet religiously all this time..
.

 I am just speechless, which is impossible for me (as many members on here will attest).

 

I do not know where to start, but I will try:

 

(1) you absolutely need to be G F every single day or suffer the myriad of consequences that accompany undiagnosed or untreated celiac. 

Lymphoma, lupus, rheumatoid arthritis, anemia,  various autoimmune diseases. osteoporosis....

infertility and miscarriages. There are so many more--!!

please, READ the information that Karen has posted for you.

 

(2) you are telling us that the doctor who diagnosed you with Celiac you did not tell you to follow a strict G F diet?
This is strange and confusing ---as it is the only treatment for C D.

 

(3) you are the only one who can control the symptoms of celiac. Start educating yourself on the G F diet, what celiac disease
is and the  appropriate follow up care you should have.

 

(4) FIND A NEW DOCTOR WHO KNOWS

WHAT CELIAC IS. If what you say about your PCP and GYN is true, they are clueless.

 

(5)Read this book:

 

Real Life With Celiac Disease by Melinda Dennis and Daniel Leffler.

 

This disease is nothing to mess with.

 

You need to change your life right now, hon.

Here is the Newbie 101 thread for "newly" diagnosed celiacs. Get started ASAP

http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

I wish you all the best. Heal and be well.  Maybe you should wait a year or so to get your body straightened out

before getting pregnant again..

This will give you the best chance for healthy babies in the future.

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    • Yes you are correct. Interestingly my genes in the US are thought to be more associated with RA. Which is something they thought I had prediagnosis. In the Middle and far East they are more likely to be associated with celiac and they are rare genes in Caucasians which I am according to my parents known heritage. I always caution folks not to take the gene tests as absolute proof they can't have celiac because I had one child who had positive blood and biopsy, did well on the diet, then got genes tested in young adulthood and was told they could never be celiac. Of course that resulted in her abandoning the diet. I worry but hope someday doctors will realise we still have a lot to learn about the genetics of this disease. PS While I still have some deformity in my hands my joint pain resolved after a few months on the diet.
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