I'm A Pregnant Celiac

[Guest jscorn]

dear people, hi!

i was diagnosed 2+ years ago. however, i went off gluten for about a week prior to my blood test (no one told me not to) so i am still unsure if, in fact, my positive resluts were false. after receiving the test reslults, i went off gluten entirely for a while, say 6-8 months, and my symptoms vanished. My main sympton was severe and immediate diarrhea. i do eat gluten now with seemingly no adverse effects to my general health. that said, yesterday i found out i'm expecting! it's early in the first tri-mester. what should i do? get retested for celiac? if i test positive again, do i eat gluten or not while i'm pregnant? how will eating gluten, or not, effect the baby? i am worried becuase i know there is a connection to autism and celiac and i want to do the best for the baby. any assistance and/or suggestions are appreciated, and in a jiffy, if at all possible.

best regards,

janine

[Guest nini]

don't want to scare you but I'm going to tell you my story...

I discovered Celiac in a search to find out why I had two

miscarriages... I went off Gluten and my lifelong symptoms that I

thought I just had to deal with (diarrhea and vomiting and fatigue) all

went away. I got pregnant again and stayed gluten-free during the first

trimester (the danger zone for me) after that my OB/GYN told me that

the Celiac thing was "all in my head" and a gluten free diet was "bad

for the baby" HOW WRONG WAS HE???? Do you really want to know how

complicated my pregnancy got once I put gluten back into my diet? I

very nearly died and almost lost my baby as well. She was delivered by

emergency c-section almost 6 weeks premature and we were very very

lucky to be alive. After a very rough first three years of my

daughter's life, and me continuing to get sicker and sicker, I was

finally referred to a gastroenterologist who correctly dx'ed me with

Celiac based on the fact that I had responded positively to the diet

before and that all my symptoms pointed to it, even though I wasn't the

classic skinny Celiac. He told me that he was 99.9% positive that I had

Celiac before he did the blood tests and told me to go gluten-free immediately.

When he called me 10 days later my bloodwork was highly positive. He

said no point in doing the biopsy, we have the answer! At my six month

checkup I was already well on my way to being healthier and we had

figured out that my daughter's symptoms were also caused by gluten

(same symptoms I had as a child) she was dx'ed by positive dietary

response alone. Because the idiot Ped. GI that I took her to said that

she just had IBS and I needed to feed her MORE whole wheat. UM NO. her

pediatrician agreed that we would try the diet and VIOLA! A miracle!

What I am trying to say is that positive dietary response is your most

valid diagnostic tool, you already know that is the problem. If you

continue to eat gluten you run the risk of losing your baby, of dying

yourself, or developing some really terrible autoimmune disorders...

Please go back on the gluten-free diet, don't let anyone try to talk you out of

it since you already know that it made you better on it. Good luck.

[Guest jscorn]

thank you for sharing your story. i think am going to get retested for celiac next week when i see the doc. i just have a nagging feeling i received a false positive back on the first test. however, in the meantime, i am 100% heading your advice and going gluten-free until i receive the second blood test results. thank you, again, for sharing your personal experience. i appreciate it very much. best, janine

[WGibs]

From what I understand, the tests don't yield false positives. If you tested positive, you have celiac. The tests do yield alot of false negatives. If you are off of gluten and get tested again, you will likely get a false negative.

Why do you think your positive results were wrong? The dietary response supported the diagnosis...why did you start eating gluten again?

[happygirl]

jscorn-congrats on your pregnancy!

just so you know, if taken gluten out of your diet, had your blood tested, and had a negative test, there would be a higher chance that you had a false negative. That you had taken out gluten for a week, and still had a positive, says to me that you have Celiac (or a gluten intolerance). Bloodwork indicates that you are having a reaction to gluten. If you had kept gluten in your diet, the chance is that your bloodwork might have been an even STRONGER positive to gluten.

[Ursa Major]

Janine, I am confused. Normally a positive blood test means, without a shadow of a doubt, that you have Celiac disease. There can be false negative results, but never false positives. So why do you say that you think you got false positive results?

[Guest nini]

if your blood test was positive, YOU ABSOLUTELY HAVE CELIAC, there are no false positives ever. Now, if it was negative after going off gluten for a while then reintroducing it, then you could have a false NEGATIVE. But never ever a false positive. The dietary response is THE BEST indicator and if you had it backed up with a positive test, why on earth are you doubting that?

[Guest jscorn]

thanks also to WGibs and LauraJ. the gastroenteromologist (spelling?) i saw here in austin a few years ago was no help to me at all. (does anyone have a doc in austin they can recommend, by chance?) Dr. Alcocer was nice enough, told me i was positive, handed me a pamphlet to read, and sent me on my way. i conducted researched online at the time. it was then/there i received the notion that false positives were/are common. perhaps research has changed but i did read that back then online, on more than one site. so, what you're telling me is, you belive that notion is likely incorrect. that having removed gluten from my diet and still testing positive likely reinforces my likleyhood of being a celiac. well, that stinks doesn't it? i started eating gluten again because i was jsut plain tired of not eating it. perhaps that seems self destructive given that you all know TONS more on this matter than i. besides what i have learned in the last few posts here about potential for miscarriage, i have forgotten all the research i conducted 2+ years ago. now that there's a second life to consider. things have changed. for peace of mind i am going to get retested. do i eat gluten before the test or avoid it? i guess avoid it per your two replies....? i apologize for my redundancy. i'm attempting to make all of this stick. best, janine

[WGibs]

There really isn't any reason for you to get retested, but if you must, you should continue to eat gluten before the test. If you don't, you risk getting a false negative. The blood tests are looking for antibodies and other things that show a reaction to gluten. Without eating gluten, your body won't be having a reaction (this is a good thing). Someone with a 100% certain diagnosis of celiac should have negative blood results if they have been 100% gluten-free for long enough.

Does this make sense?

[Guest nini]

why bother to get retested Janine??? Seriously. Your blood test was positive EVEN AFTER taking gluten out of your diet for a week. YOU HAVE CELIAC. You do not need any more tests. Stay gluten-free and get over it.

not trying to be mean, just trying to make it perfectly clear that with positive blood tests there is NO room for error. If it was negative, sure, but not a positive result.

DO NOT GO BACK TO EATING GLUTEN. DO NOT worry about getting any more tests done. If you have been gluten-free for a while, the results are likely to be a false NEGATIVE. It really won't tell you anything.

The Celiac expert that recently spoke at our support group meeting, (a very busy gastroenterologist in Atlanta) said that she NEVER has a patient go back on gluten for testing if they have had a positive dietary response. It's pointless. And even one more day on gluten puts your baby at risk.

YOU HAD A POSITIVE BLOOD TEST, THEREFORE YOU HAVE CELIAC. You are one of the lucky ones that got an accurate dx. Yeah, shame on the Dr. for not giving you more info back then, but he did at least find Celiac. Do you realize how lucky you are????

There really isn't any reason for you to get retested, but if you must, you should continue to eat gluten before the test. If you don't, you risk getting a false positive. The blood tests are looking for antibodies and other things that show a reaction to gluten. Without eating gluten, your body won't be having a reaction (this is a good thing). Someone with a 100% certain diagnosis of celiac should have negative blood results if they have been 100% gluten-free for long enough.

Does this make sense?

you mean she risks getting a false negative?

[Guest jscorn]

There really isn't any reason for you to get retested, but if you must, you should continue to eat gluten before the test. If you don't, you risk getting a false positive. The blood tests are looking for antibodies and other things that show a reaction to gluten. Without eating gluten, your body won't be having a reaction (this is a good thing). Someone with a 100% certain diagnosis of celiac should have negative blood results if they have been 100% gluten-free for long enough.

Does this make sense?

[WGibs]

you mean she risks getting a false negative?

Exactly...can't believe I messed that up...will edit my original. I was trying to explain that, as a celiac, she could still get a negative result if she wasn't eating gluten. Her first tests were positive and, in my opinion, the end of the story, but if she gets tested again, she risks a false negative if she's off gluten.

I think it confuses people because they think that celiacs have something in their blood all the time that labels them celiac. But in fact, the tests depend on the presence of gluten to show that gluten makes you sick. The fact that she got positives the first time around even after giving up gluten was lucky, in my opinion.

[Guest jscorn]

everyone but WGibbs is freaking me out. I feel that all caps and such stern communication is unnecessary, inappropriate, and entirely unappreciated. i was looking for a little advice and it is quite apparent i looked in the wrong place. according to what i recall from my research years ago, WGibbs is correct, there must be antibodies to be recognized and false positives ARE possible. this is the last post i will make on the matter. it is quite apparent you all feel very strongly about celiac and i wish you the best but your mode of communcation is accusatory and abrasive. also you should remember i have been eating gluten - almost everyday- for a long time now and experiencing no noticable adverse effects. all my best to you and yours. i will not check this again and am deleting my membership.

[WGibs]

Hi Janine,

I hope you check one more time. It was a typo when I said you could get a false positive. I meant negative. Positives are always right, but negatives can be wrong. It's just the nature of the tests.

I wish you best of luck and good health and apologize for any confusion.

[Guest nini]

whatever.

[penguin]

thanks also to WGibs and LauraJ. the gastroenteromologist (spelling?) i saw here in austin a few years ago was no help to me at all. (does anyone have a doc in austin they can recommend, by chance?) Dr. Alcocer was nice enough, told me i was positive, handed me a pamphlet to read, and sent me on my way. i conducted researched online at the time. it was then/there i received the notion that false positives were/are common. perhaps research has changed but i did read that back then online, on more than one site. so, what you're telling me is, you belive that notion is likely incorrect. that having removed gluten from my diet and still testing positive likely reinforces my likleyhood of being a celiac. well, that stinks doesn't it? i started eating gluten again because i was jsut plain tired of not eating it. perhaps that seems self destructive given that you all know TONS more on this matter than i. besides what i have learned in the last few posts here about potential for miscarriage, i have forgotten all the research i conducted 2+ years ago. now that there's a second life to consider. things have changed. for peace of mind i am going to get retested. do i eat gluten before the test or avoid it? i guess avoid it per your two replies....? i apologize for my redundancy. i'm attempting to make all of this stick. best, janine

I'm in Austin and I don't have a GI, but Dr. Sara Bartos is my normal dr. and she dx'ed me based on funny bloodwork and positive dietary response. She's good, very common sense.

EDIT: I posted this before she got all pissy and left. No offense Janine, if you actually continue to read this, but a positive Celiac test is like a positve pregnancy test. You can't get a false positive pregnancy test, because you're either pregnant, or you're not. You either produce the hormone or you don't. Same with the Celiac antibodies, either you produce them or you don't. Sure, there's a theoretical possibility of getting a false positive, but it's a very tiny chance. Here's a link from this site: https://www.celiac.com/st_prod.html?p_prodid=13

If all of your levels were high, you probably have celiac. Heck, if you felt better on the diet, you have problems with gluten. Even if you don't have problems now, how long did it take you ingesting gluten and getting sick before your diagnosis? Denial is powerful, but it's dangerous. It's not just your life you're putting in your hands.

[Canadian Karen]

jscorn,

I am sorry that you feel that way, but after reading this thread, I don't see where you were mistreated in any way. Yes, we are passionate about Celiac Disease. Yes, we may be overly zealous in our attempt to get people to realize the seriousness of this insidious disease, but keep in mind that we are only this way because we have been to hell and back with this disease and don't wish others to have to travel that same road.

Perhaps the reason you feel the way you do is due to the fact that deep down inside, you KNOW you have celiac and you KNOW the damage you will be doing to your fetus if you continue on gluten. If you ever do come to the realization that you need to stay gluten free for the rest of your life, not only for your sake, but for the sake of that baby who needs his/her mother to be around while they are growing up, then we will be here. There are a bunch of really great, supportive people on this forum who only wish to help people through this disease. You are always welcome.

One last thing, I have been diagnosed as refractory celiac sprue, due to misdiagnosis for decades. I want you to know what can happen to your body when you remain on gluten when you have celiac disease. This is something I now have to live with, my body will never heal. But I try my hardest not to let this happen to anyone else..

Here is a link:

Please read the refractory part of this link.

Open Original Shared Link

Take care and congratulations on your pregnancy!

Karen

[Guest nini]

I was only trying to help. I was trying to put the emphasis on the seriousness of this. I feel passionately about the topic of undiagnosed or misdiagnosed celiac and pregnancy because it is a topic that is near and dear to me as I have personal experience with what can happen.

Denial is a serious thing and you've got to come to grips with it. Wether or not you choose to believe us (or even read this anymore) we know what we are talking about. In fact most of us know more about Celiac than most of our Dr.s.

A positive blood test is positive. There is no question.

[Ursa Major]

I have had EIGHT miscarriages due to Celiac disease. I don't wish the misery this caused me on anybody else. If I would have known about celiac then, I would never have dared to eat gluten during pregnancy (or any other time).

[Becky6]

I have been sick for years and finally went gluten free. Well, I had the worst pregnancy 4 years ago! I got pre-eclampsia and HELLP syndrome. My daughter was starved and weighed only 2 lbs 12 oz at 33 weeks. She was the size of a 28 week baby. I almost need a liver transplant and my platelets dropped dangerously low. My blood pressure reached 217/182 the night I had my emergency c/section and that was on blood pressure meds! I am pretty sure that gluten caused all of that and we both almost lost our lives! I don't want to scare you but show you how serious this can be. I am not sure you will read this but just wanted to help.

[mouse]

I had two miscarriages and one was at 6 months. It was a horrible emotional time for me. I would not wish that on my worst enemy.

There is no doubt that my only child, a daughter, has Celiac. She will not be tested. She was the classic Celiac baby, but no one diagnosed her. We spent weeks with her being in the hospital with IV's interwining through her small body.

She gave birth to our only grandchild at 16 weeks early. Our granddaughter weighed 1# 10oz and was 13" long. We are very fortunate that she does not have Cerebel Palsey, blind and all the other things that go with an extremely high risk preemie. She came home from the hospital wearing preemie doll clothes.

I am sorry but if you have been tested for Celiac and it was postive, then there is no error.

Please think of your unborn child. I just wished that I had known all this 40 years ago as I could have avoided so much heartache.

[Melzo]

I feel kind of similar to jscorn. I am pregnant, however, I think it is the thought of not ever eating gluten for the rest of my life that wants me to be tested one more time to just be sure. It is even harder while I am pregnant to cope with being a Celiac. I am going to be tested after the baby is born to just get a second opinion. A second opinion never hurts anyone. It would hurt the baby if I would do it at this time, but after, no. As far as there never being a "False Positive" I am not sure and I believe all who say it is true, however, for my own sanity (or stupidity as some see it), I am going to have a second test done.

[skoki-mom]

I'm not sure if gluten itself affects the fetus (as in, I don't know if gluten crosses the placenta and circulates into the developing fetus). However, if you do have Celiac Disease and you are not on your diet, you are at risk for serious nutritional deficiencies for both yourself and your baby. The fetus will leach off you first, leaving you more deficient that it/he/she. I was not diagnosed prior to having my children, and all I can say of my own personal experience is that I had 2 fat and healthy babies who appear to still be very healthy children (they do not have celiac disease). Obviously I *did* have celiac disease at the time, but I didn't know. Pregnancy is not an indication to quit a gluten-free diet, and pregnancy can actually be a trigger of celiac symptoms in some women.