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Can You Have Celiac With No Symptoms Whatsoever?

MrsJohnnyG

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MrsJohnnyG Newbie
MrsJohnnyG
Posted

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!)

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jerseyangel Proficient
jerseyangel
Posted

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.

GFqueen17 Contributor
GFqueen17
Posted

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!

veggienft Rookie
veggienft
Posted

I'm very sorry for your lost children.

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

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

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:

Open Original Shared Link

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

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.

..

MrsJohnnyG Newbie
MrsJohnnyG
Posted
  • Author

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

MrsJohnnyG Newbie
MrsJohnnyG
Posted
  • Author

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!

jerseyangel Proficient
jerseyangel
Posted

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.

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MrsJohnnyG Newbie
MrsJohnnyG
Posted
  • Author

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? :(

samcarter Contributor
samcarter
Posted

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.

ravenwoodglass Mentor
ravenwoodglass
Posted
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)))))))))))))))))))))

finally diagnosed Apprentice
finally diagnosed
Posted
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.

MrsJohnnyG Newbie
MrsJohnnyG
Posted
  • Author
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.

MrsJohnnyG Newbie
MrsJohnnyG
Posted
  • Author

*** 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.

firegazing Newbie
firegazing
Posted

Thank you for updating us on your situation. I really hope you can get to the bottom of what's going on. Take care!

dadsspecialt Newbie
dadsspecialt
Posted

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.

MrsJohnnyG Newbie
MrsJohnnyG
Posted
  • Author

Thank you. I will miss this forum even though I was here for only a short time! What an amazing resource if it had turned out I did have celiac. I wish you all the best.......

MrsJohnnyG Newbie
MrsJohnnyG
Posted
  • Author
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).

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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