Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

MrsJohnnyG

Can You Have Celiac With No Symptoms Whatsoever?

Recommended Posts

Hi, everyone... sorry for plunging right on in with a dumb question... my husband and I have been trying to have a baby and although we're able to conceive, with every pregnancy, the baby dies between 10 and 12 weeks. (I've been tested for everything in the world EXCEPT celiac disease, and my husband and I are both deemed "normal.")

Neither I nor anyone in my family has ever had any type of digestive issues. I used to joke that I have "bowels of steel" because nothing phases me... I have gone through list after list of celiac disease symptoms and I don't have ANY of them.

Is it possible to have celiac disease and have absolutely no symptoms of it? That may sound weird but I am desperate for answers. My acupuncture practitioner told me I am allergic to wheat, but that was just after looking at my TONGUE (it was obviously not based on any bloodwork or symptoms).

Thank you in advance for any ideas on whether a person can have celiac with absolutely no symptoms! (and yes, I do plan to be tested ASAP!)

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Hi and welcome :)

I'm so sorry about your babies. It is possible to have Celiac with no apparent symptoms. Many times, it's something like anemia or depression or osteopenia that tip people off.

I'm glad you're planning on being tested--it's definately worth a shot, in my opinion.

Good luck--make sure they run the complete Celiac panel and eat lots of gluten right up until the test.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

Share this post


Link to post
Share on other sites

First of all, I am very sorry for your loses.

Secondly, I know for a fact that it is possible because very similar things have happened to my grandma and another lady that I know. Celiac runs in my family and the majority of women on my mother's side have it. My mother's mother had no symptoms of the disease besides the fact that she had six miscarriages.

Furthermore, my mom is an OBGYN specialist. She deals with infertile women and helps them to get pregnant. One lady that she recently saw tried everythingggg and still could not get pregnant. Then her dad became diagnosed with celiac disease so my mom recommended that she get tested for it as well (although she had no symptoms). She was tested positive and began a gluten-free diet. Very shortly after she became pregnant.

I hope this is helpful. And if you want my opinion, definately get tested!

Share this post


Link to post
Share on other sites

I'm very sorry for your lost children.

There are many people with intestinal celiac disease, but no symptoms of any kind.

No Symptoms?

Ceilac Symptoms Without The Ceilac Gene?

No External Symptoms - Only Biposy - Anyone Else

But you DO have celiac symptoms. You just don't have digestive symptoms.

You have miscarriages. That's a symptom of the autoimmune disease antiphospholipid syndrome:

Celiac disease associated with antiphospholipid syndrome

--------------------------------------------------------------

Discussion: antiphospholipid syndrome is characterized by

arterial and venous thrombosis, and spontaneous fetal death. Its

association with celiac disease has been described in few cases.

Celiac disease is associated with spontaneous fetal death; consequently,

we hypothesize that antiphospholipid syndrome may be

one of the causes for this event.

--------------------------------------------------------------

This link is pregnant with celiac's connection to miscarriage:

http://jccglutenfree.googlepages.com/infertilityandmiscarriage2

At least try a gluten free diet for a couple months. And while you're at it take a daily dose of fish oil. Omega 3 is the remover of spent phospholipids.

May you be blessed with all the healthy rug rats you want. Good Luck.

..

Share this post


Link to post
Share on other sites

YES!!! This is SO helpful!!! Thank you so very much... I will definitely get tested.

The weird thing is, like I said, no one in my family has ever had digestive issues or other symptoms, not even miscarriage... I seem to be the only one. I did have a bout with depression in my 20's, but at the time I was eating a super-healthy (mostly fruits and vegetables and nuts/seeds) diet, without really any gluten products that I can think of (I didn't eat processed food and I have NEVER eaten much bread).

Still, I want to leave no stone unturned and will add this to the list of things to be tested.

Thank you so much again for such quick and helpful replies!!

Julia

Share this post


Link to post
Share on other sites

veggienft, thank you so much too for the great info and links -- SO helpful!!!

And while you're at it take a daily dose of fish oil. Omega 3 is the remover of spent phospholipids.

I do take flax seed oil (as well as consume fresh-ground flax seeds in various foods I eat)... from what I understand it has similar positive benefits. Hopefully flax seeds aren't considered bad for the gluten-intolerant!

Share this post


Link to post
Share on other sites

Veggie,

That was very interesting. My mom has been diagnosed with antiphospholipid syndrome. She had 3 miscarriages and 3 pregnancies that went full term.

There is no Celiac known in the family except mine.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

Share this post


Link to post
Share on other sites

Hi again... I want to thank you all again for your replies.

The more I learn about celiac, the more I'm becoming convinced I have it. (I am trying to get tested ASAP if my insurance will allow it.)

I am also depressed because I've realized I may have killed my last baby. :( When I was 9 weeks pregnant this last time, I saw a carrot cake in the grocery store and started craving it, so I bought it (intended for my husband to eat most of it).

I polished the whole thing myself in 3 days. :( The day after I finished it was my 9-week-2-day ultrasound. The baby had JUST passed away. It was measuring right on target... just with no heartbeat.

I killed my baby... didn't I? :(

Share this post


Link to post
Share on other sites

MrsJohnnyG-

PLEASE do not beat yourself up over this. You had no idea that celiac could be a possibility, and if you were already eating a standard American diet, then one carrot cake wasn't going to be the trigger or the cause of your miscarriage. I have never had a miscarriage, but I have had friends who have, and you can't go around blaming yourself when you had no idea what might be the problem.

((hugs)) I am so sorry for your loss and hope the testing helps you figure out what has been causing the miscarriages.


Negative EMA test 8/08

Gluten free 8/08

Positive response to dietary change

Dairy free 3/09

Citrus free 5/09

Allergies: bananas, apples, green beans, mold.

Share this post


Link to post
Share on other sites
Hi again... I want to thank you all again for your replies.

The more I learn about celiac, the more I'm becoming convinced I have it. (I am trying to get tested ASAP if my insurance will allow it.)

I am also depressed because I've realized I may have killed my last baby. :( When I was 9 weeks pregnant this last time, I saw a carrot cake in the grocery store and started craving it, so I bought it (intended for my husband to eat most of it).

I polished the whole thing myself in 3 days. :( The day after I finished it was my 9-week-2-day ultrasound. The baby had JUST passed away. It was measuring right on target... just with no heartbeat.

I killed my baby... didn't I? :(

NO YOU DIDN'T. I was on a full gluten diet and quite ill when I finally was able to carry my children to term. I also had a couple of miscarriages in my history and over 10 year of failure to concieve. Doctors do not know why conception issues are occuring with celiac or why we tend to miscarry. You did not kill your baby please understand that. (((((((((((((((((((((((hugs)))))))))))))))))))))


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites
Hi, everyone... sorry for plunging right on in with a dumb question... my husband and I have been trying to have a baby and although we're able to conceive, with every pregnancy, the baby dies between 10 and 12 weeks. (I've been tested for everything in the world EXCEPT celiac disease, and my husband and I are both deemed "normal.")

Neither I nor anyone in my family has ever had any type of digestive issues. I used to joke that I have "bowels of steel" because nothing phases me... I have gone through list after list of celiac disease symptoms and I don't have ANY of them.

Is it possible to have celiac disease and have absolutely no symptoms of it? That may sound weird but I am desperate for answers. My acupuncture practitioner told me I am allergic to wheat, but that was just after looking at my TONGUE (it was obviously not based on any bloodwork or symptoms).

Thank you in advance for any ideas on whether a person can have celiac with absolutely no symptoms! (and yes, I do plan to be tested ASAP!)

Hi Mrs. JohnnyG , I hate to sound like "debbie downer" you say you have been tested for everything in the world. Have you and your husband ever had genetic testing done? Sometimes there are a few genes that mix and cause fetus to sponateously abort. I knew a women years ago who carried a gene that was for Tay-Sachs disease and every pregnancy she had that was a boy she miscarried. She now has a lovely girl lauren who is 17 or 18.

I AM NOT AT ALL SAYING THIS IS IT.... (SO PLEASE NO BAD E-MAILS BACK)

I am just wondering if you went the genetic route. Please don't beat yourself up about this. Especially about eating the carrot cake. When you do conceive, does the doctor send you for blood work weekly or bi-weekly to see if your numbers are rising fast? When I miscarried the first time, I thought everything was great, going fine and then one day at a visit for 12wk check the ultrasound person told me to go home and the doctor would call. The fetus was no longer viable. They could have been a little nicer but sometimes you get so angry at them. My third pregnancy she checked me weekly for the first trimester to make sure my numbers were rising accordingly. It was hell waiting for the results because you kind of get in a funk that you don't want to celebrate the pregnancy until you know it is good.

I wish you all the luck in the world with your family goals and health.

Share this post


Link to post
Share on other sites
I hate to sound like "debbie downer" you say you have been tested for everything in the world. Have you and your husband ever had genetic testing done? Sometimes there are a few genes that mix and cause fetus to sponateously abort. I knew a women years ago who carried a gene that was for Tay-Sachs disease and every pregnancy she had that was a boy she miscarried. She now has a lovely girl lauren who is 17 or 18.

You don't sound like a "debbie downer" in the least! I appreciate ANY new ideas for things to test, whether they are celiac-related or not! And yes, genetic testing is the latest thing we have had done. My husband's results are 100% normal, not even a balanced translocation... I'm still waiting for my results, but no one in my family history has ever had any chromosome-related issues whatsoever (going back at least 5 generations in all lines) so I'm kind of doubtful that that is it... BUT, we are leaving no stone unturned.

I AM NOT AT ALL SAYING THIS IS IT.... (SO PLEASE NO BAD E-MAILS BACK)

No bad emails from me. :) I actually have tears in my eyes that you were kind enough to speak up. Thank you.

When you do conceive, does the doctor send you for blood work weekly or bi-weekly to see if your numbers are rising fast? When I miscarried the first time, I thought everything was great, going fine and then one day at a visit for 12wk check the ultrasound person told me to go home and the doctor would call. The fetus was no longer viable. They could have been a little nicer but sometimes you get so angry at them. My third pregnancy she checked me weekly for the first trimester to make sure my numbers were rising accordingly. It was hell waiting for the results because you kind of get in a funk that you don't want to celebrate the pregnancy until you know it is good.

Yes, with our last three pregnancies, I had my hCG levels closely monitored. Pregnancies #2 and #3 had slowly rising hCG levels so we knew it didn't look good.

With this pregnancy, though, the hCG doubling time was perfect... in fact it was so high they were thinking multiples. The first ultrasound at 6 weeks was perfect too... perfect size, perfect little heartbeat. So as much as I steeled myself that something could go wrong, it was devastating to see that my little baby's heart had stopped beating right at 9 weeks. :( We are having chromosome testing done on the baby, but won't have those results back for another week.

Thank you so much for the kind words. It's ever so much appreciate.

Share this post


Link to post
Share on other sites

*** UPDATE ***

I just got the call from the doctor... I tested NEGATIVE for celiac. This was based on the antibodies blood test. I suspected I did not have it, like I said because I have never had any of the symptoms (nor has anyone in my family history), but I wanted to leave no stone unturned. I DO suspect that my husband may be gluten-intolerant... but that would have no bearing on these miscarriages.

A few days ago I also found out why the last miscarriage happened. It was a baby girl and she had Turner syndrome... a missing chromosome that causes miscarriage in 99% of the baby girls who have it.

So, thank the Lord, her death had nothing to do with my eating carrot cake. Now I just have to get to the bottom of why I keep having different chromosome problems with my babies.

Thank you again for all your replies and support. You all were so helpful.

Share this post


Link to post
Share on other sites

Hi there, please remember that you can test negative on bloodwork, and still be producing antibodies, just not enough to be showing in the blood yet. Consider Enterolab testing - we did that, even though we have no GI symptoms at all!

My husband has a celiac and a gluten sensitive gene and antibodies to gluten, casein, soy, and egg. I have 2 non-celiac gluten sensitive genes, and antibodies to gluten, casein (waiting for rest of testing). Our 3 kids range from 2 gluten sensitive genes only without ANY antibodies, all the way to 1 celiac/1 gluten gene with antibodies to gluten, casein, soy, egg, and yeast :o !

Hoping for a new "little one" for you soon... :)

Tam

====================

I just got the call from the doctor... I tested NEGATIVE for celiac. This was based on the antibodies blood test. I suspected I did not have it, like I said because I have never had any of the symptoms (nor has anyone in my family history), but I wanted to leave no stone unturned. I DO suspect that my husband may be gluten-intolerant... but that would have no bearing on these miscarriages.

Share this post


Link to post
Share on other sites
Hi there, please remember that you can test negative on bloodwork, and still be producing antibodies, just not enough to be showing in the blood yet. Consider Enterolab testing - we did that, even though we have no GI symptoms at all!

My husband has a celiac and a gluten sensitive gene and antibodies to gluten, casein, soy, and egg. I have 2 non-celiac gluten sensitive genes, and antibodies to gluten, casein (waiting for rest of testing). Our 3 kids range from 2 gluten sensitive genes only without ANY antibodies, all the way to 1 celiac/1 gluten gene with antibodies to gluten, casein, soy, egg, and yeast

Thank you, Tam... just out of curiosity, what made you pursue Enterolab testing in spite of zero symptoms and no antibodies? I am certainly open to pursuing that, but there are 1,000 possible reasons I could be having all these miscarriages, and I would like to have a good reason to think I might have celiac before pursuing this road so diligently when I have zero symptoms and tested negative on the bloodwork even after weeks of intentional gluten bingeing. Do you really feel there is reason to think I could have celiac in spite of all this? If yes, I will gladly consider Enterolab testing, but right now it seems that there is just no reason to think I have celiac and that there must be other reasons I keep having miscarriages (for one thing, at least the last two have been because of chromosomal problems).

Share this post


Link to post
Share on other sites