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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

High Fsh And Celiac Disease? My Story.
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9 posts in this topic

I'm sorry if this post is disorganized/confusing at all. I have a LOT of questions.

Hi there, I'm Julie. 30 years old, from NY. TTC for about a year...I will give you a briefing of my situation - or you can skip ahead if not interested :) -

I have been searching for a larger reason behind my infertility caused by "high fsh" and after seeing several specialists, having unsuccessful IUIs, etc...nobody can give me a reason. They say my eggs are just bad, and suggested that I might have premature ovarian failure. I've had about 15 FSH tests over the last year, and most turned out normal - under 10. Two tests came back spiked which lead to the diagnosis. The first was 15, and the second was 28. My fertility doc told me I have a 2% chance of conceiving with my own eggs, and that I should look for a donor, and not waste my time on IVF.

I saw a rheumatologist because I had antibodies present in my blood tests - and he said all of his tests came up negative, and I am not symptomatic of any autoimmune diseases, and that was that. SO----I ended up going to a holistic doctor and acupuncturist. She ran food allergy tests on me which returned results stating that I have gluten intolerance. I later called my rheumatologist to ask if they ever tested my blood for a gluten allergy, they said no.

I have a few question - but they all stem from this. WHY, if celiac disease is the cause of many unexplained infertility cases, did my supposed almighty fertility doctor not think to test me for this?

When I first had concerns about my health, I had presumed that I had a thyroid condition. I was actually crossing my fingers and praying that a thyroid problem was my issue. That way I could fix that issue, and be on my way to getting pregnant. Unfortunately, those tests came back normal. The symptoms are somewhat similar to those of celiac disease. How could my doctor have missed this??

Is there a link between celiac disease and high FSH? I'm searching high and low for a reason that I cannot have children. I can't give up just yet.

I have been avoiding gluten products for about 3 weeks, and have a test for celiac disease next week. Will the test results still be solid even though I've been avoiding gluten?

Anybody in a similar situation? I could really use some support.

thanks so much. Again, I'm sorry for any confusion. But if you have any questions regarding what I said, I'm an open book.

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I have a few question - but they all stem from this. WHY, if celiac disease is the cause of many unexplained infertility cases, did my supposed almighty fertility doctor not think to test me for this?

I have asked myself this time and time again. However, I do have one thought though: If 20% of infertility can be attributed to gluten intolerance, they would lose some money in infertility treatments. Well that seems too mean spirited so I will say "maybe they dont' keep up on the recent news". Even my Celiac Specialist GI is not current on her info.

I have been avoiding gluten products for about 3 weeks, and have a test for celiac disease next week. Will the test results still be solid even though I've been avoiding gluten?

This will effect your results. You need start eating gluten right away and it may be too late for you to have accurate testing by next week. I will need one of the more seasoned forum folks to help out with this one.

I did the infertility route for 5 years and I will say that you need to be your own advocate (really for any difficult health issue).

I am sure some others will help out. I am new to gluten intolerance but not new to infertility.

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While I can't specifically address your questions, I can say that I believe with 100% certainty that I would NOT be pregnant right now if I hadn't gone gluten free. I'm 35 and went off of Depo back in May, a month before my husband (who's 40) and I got married because we knew we wanted a family and given our ages that we needed to start trying right away. When I had my annual in August, my doctor was ready to start looking at fertility issues as I had not started cycling yet or even showing any signs whatsoever of it impending. All the while, we were trying to get to the bottom of my other issues that we all *believed* to be unrelated. I had my colonoscopy/EGD in September (during which they failed to take the proper biopsies, which I didn't find out for two weeks) and IMMEDIATELY went gluten free, using the 'clean-out' for the procedure as a springboard for starting gluten free. When I had my follow up two weeks later was when I found out that the damn doctor had just decided that he didn't want to do the biopsies. By that time it was too late to get any real results and I wasn't about to start eating gluten again. Sorry for the side road, just needed to fill in some details. Back to the point... So I went gluten free in mid-September and by mid-October I was cycling. My OBGYN (and us, too, for that matter) seriously doubted that I'd be ovulating for a while, but she wanted me to get some home ovulation test kits just so that we'd have that information so that we could add it to our arsinal for what looked to be future fertility treatments. Lo and behold, I was ovulating from that very first cycle and on my second cycle I was pregnant. No one will ever convince me that kicking the gluten out of my life was not the direct reason!

Jen

PS - Oh, and none of my doctors were in any way familier with the connection between fertility and gluten.

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Yes celiac can cause fertility issues I have had 3 miscarges and 3 kids but found out after diagnosed with celiac that it was why I was miscarrying and that some people can't get pregnant because of it.

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I too firmly believe I would never have had my DS or be pregnant with number two if I had not gone gluten free. Mind you I was in such chronic pain and felt so awful before going gluten free that the thought of having children before I went gluten-free filled me with fear. As soon as I felt better I wanted to have babies!

If a diagnosis is important to you, I would concentrate on eating gluten and getting the diagnosis and put baby making on hold for three months.

For me, a diagnosis wasn't important so I just went gluten-free. That's an option too. I got preggers 4 months after I went gluten-free (two months of trying). If gluten is indeed contributing to your fertility issues then there is indeed hope. And the only way to figure it out is to trial the diet and keep ttc - and the best part is you don't need any doctors to do that!

Good luck and lots of baby dust...

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If you are planning on going thru with the blood test for celiac you need to be on gluten for at least 2 months so keep that in mind. However, testing for dceliac is not real accurate. You may have celiac and your test could come back negative, a year later you may test again and then get a positive reading so keep that all in mind.

There is a connection to celiac and miscarriages. When you start reading about how damaging gluten is for the ody you will be amazed and wonder why it was ever allowed on the market. According to Dr Oz, something like 88% of the population cannot tolerate wheat. So tell the general population that, they would think you were nuts.

Patients dignosed with MS, Parkinsons, schizophrenia, autism (just to mention a few) have all seen improves when put on a gluten-free diet which is absolutely amazing if you think about it.

I also miscarried in my 20's.

You daon't have to have a diagnosis to go off gluten if you want to give it a try but realize that inorder to attempt to get a diagnosis of celiac or gluten intolrance you do have to be consuming gluten.

Best of luck to you!

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First, let me recommend that you find, if possible, a gastroenterologist who focuses on celiac. I was never tested by multiple internists and gastros over 15 years, despite having "all the classic symptoms". When I finally went to my current doctor, she said -- "I don't really need to test you, your medical records clearly show celiac!" Many doctors just don't consider celiac, who knows why. Second, your celiac tests will not be accurate if you are already off gluten, so be sure to tell your doctor that before you are tested. As for the fertility issues, I don't know -- but it can't hurt to try gluten-free and see!

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Ok, I have to respond. I could have written your post. My name is Julie, I'm 38. After my first child was born, we could not get pregnant. I had first baby at 30yo and tried for 5 years to have another. Was told my FSH was high, premature ovarian failure (at 32) and poor egg quality. I did everything from western medicine to holistic acupuncture. Nothing worked. All along and for as long as I can remember I also had "IBS." fortunately for us after 6 IUIs and 3 IVFs we had our second child six years later. Somehow one year after that birth we got a surprise, pregnant on our own again. My last two pregnancies were very difficult. I was still carrying the IBS diagnosis and was high risk for several issues. My third child had intrauterine growth restriction, I suffered severe dehydration from persistent diarrhea requiring IV fluids, etc. full term healthy babies are possible with celiac but I just wish I had known what my problem was so I could have been healthier during pregnancy. All my drs (obgyn and GI) brushed my symptoms off as IBS. It wasnt until I really hit bottom two months ago, feeling like I am wasting away with cancer that I demanded certain blood tests, scopes etc. turns out due to significant malabsorption from celiac, all my vitamins are depleted. I'm on weekly B12 shots, hight dose D3 and am seeing a hematologist next week for possible iron infusions. Having a baby is the most wonderful thing. It takes a toll on normal healthy bodies and I would encourage you to be as healthy and informed as possible going into pregnancy. Good luck. After my second child, my obgyn asked me if I wanted birth control. Given my infertility history and journey, I laughed and told her I would take my chances. :)

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Oh, I'm sorry that you find yourself in this position. It's one many of us have been in in one way or another. We find the answer, we implement the cure, we want confirmation of our self-diagnosis and we cannot get it because we have self-diagnosed and started to heal. I too think that a celiac test should be mandatory before fertility treatment is commenced - maybe less lucrative for the doctors but much more helpful for the patient and ultimately less expensive for the health care system. I also think that a celiac blood panel should be mandatory for rheumatology patients. My rheumy didn't even think there was any connection between rheumatoid symptoms and celiac :o so I guess that's why it isn't.

Why don't these doctors stay current? Well, there's so much research going on and it's much more fun to play golf on Wednesday afternoons, and the medical conferences (CME) are a good chance to catch up with colleagues and eat at some good restaurants.... I know in the law office it was hard to keep up to date with new case law, but you sure didn't go to trial unless you had all the latest information, but hey, the doctors just have to worry about lives :rolleyes:

I would guess from your post that you don't have a lot of GI symptoms that would have alerted anybody?? Anyway, after three weeks the testing is going to be pretty much useless, and unless you have a lot of GI symptoms an EGD would be pretty much useless unless you had it done right away and were lucky. Otherwise, as a pp said, it's 2-3 months of gluten eating to get an accurate result. :(

So your dilemma is which do you want more, an early baby or a diagnosis?? A diagnosis is not necessary as so many of us on here will attest; ultimately it has to be your choice, but I have a very strong hunch that if you stay gluten free you will feel great and you will be able to conceive.

More baby dust coming your way. :)

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    • Weird Reaction
      Hi Richie By the sounds of it you could have gluten sneaking in somewhere, or maybe blood sugar issues,  or just plain anxiety, but it would be good to know for sure so you know what to do next. I think maybe the best course of action would be to see your GP and  tell him/her all your symptoms.  Book a double appointment as we say in the UK (but that isn't always possible!)  I dread seeing my own GP because as lovely as she is she is very fond of sending me for blood tests (which always seem to include liver function, thyroid and full blood count) which for someone with health anxiety isn't the recipe for a peaceful night's sleep!  But she is right, those particular blood tests, and others, can hold important clues when one has a lot of vague symptoms.   Celiac testing is of course another set of tests, which Flowerqueen has described well above.    If you do have all these tests and anxiety continues to be a problem, whether caused by by celiac disease, another medical condition or just being a stand alone problem, one book that I would recommend that really helped me understand the condition is 'At Last a Life' by  Paul David. I found it an immensely helpful tool in my recovery.   There is also a website. http://anxietynomore.co.uk/   Keep us posted Cristiana      
    • celiac disease is psychosomatic
      Unfortunately I feel this may be common.  For 6 years I was told I was fine.  Lungs fine, chest fine, just anxiety.  It was not until I pressed the anemia issue that I got a blood test.  Now I am a bit of a squeaky wheel to my doctor.  She referred me to Mayo Clinic in Rochester MN which has a celiac center.  I will meet with Dr. Murray (who is a leader in celiac research) next Friday.  If nothing else, you could always come to Mayo Clinic.
    • celiac disease is psychosomatic
      I read a summary report a doctor wrote about me. I thought doctors were more knowledgeable about celiac disease these days, but I guess not. The doctor diagnosed me with psychosomatic disorder when I told her the symptoms (including anxiety since the intestines regulate this) I had from years of undiagnosed celiac disease that affected my ablity to function. Please let me know if you had any disabling symptoms. I have heard stories of how others felt like they were dying. I felt the same way. I didn't mention that I felt like I was dying to my doctor, though. I just can't believe she thought my symptoms from celiac disease were all in my head like celiac disease isn't a real disease.
    • How long before you know you were glutened?
      Just was curious to know what other people experience. It seems that when I get glutened symptoms don't hit me till about 40 hours later. I had a tiny piece of cookie (not gluten free) on Friday around 6pm. Saturday I felt totally fine so I was thinking wow maybe I'm not so intolerant anymore then this morning (Sunday) holy moly!! Headache stomach ache and anxiety. So whats everyones time frame? How soon before you feel glutened?
    • Weird Reaction
      the shakes and nausea and feeling of doom, makes me think low blood sugar.  keep a good food diary. and assess for protein intake.
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