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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.

I'm Miserable. :-(
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32 posts in this topic

I've been pretty much sick 24/7 since getting pregnant. Normally, I don't feel too terrible until around 2:30 pm, and then just go downhill from there.

I have almost constant nausea. I have something going on in my throat/chest (heartburn?) where it feels like I have to burp but can't. Like a lump in my throat. It's almost like anxiety... I don't know.

The doctor gave me a prescription of Odansetron for the nausea... now I feel like I've gotten worse, if anything. I've felt horribly sick all day today, rather than being okay in the morning and getting sicker in the afternoon.

Last night I didn't sleep at all. My heart was racing so fast I thought I was going to have to go to the emergency room.

Does anyone know any coping strategies. I'm so upset... worried that I'm going to be one of those people who are sick the entire pregnancy. I'm just over 9 weeks pregnant right now.

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Talk to your ob right away. The med might not agree with you.

Seems like you feel worse when you have been up & going for awhile. I always got worse when I was tired or if I didn't keep a little food in me all the time ( blood sugar thing). Even if it's hard to eat, see if every hour or so you can slide in a spoonful of yogurt, Chex, cracker, fruit, pudding something.

For some people, flat ginger ale helps (room temp can, pour into cup takes out bubbles). I found sucking on lemon drops helped. Saw a study that the smell of lemon helps nausea.

Hang in there! The reward is great !

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You poor thing--I agree with Karen's advice. It sounds as though the medicine is not agreeing with you.

I found that a little something in my stomach helped with nausea when I was pregnant. Hopefully the queasiness will ease off soon :)

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While perusing the site, I saw the "I'm Miserable" post under pregnancy and I had a feeling it was regarding morning sickness. I have one child, and she's 7, but I still remember the awful pregnancy I had. I now realize that it's very common for undiagnosed celiac's to be very ill throughout the pregnancy. I was hoping for the other women on this board that following a gluten free diet would ease up the symptoms. I pray that you are like most women and in a couple of weeks the symptoms will go away.

The hardest thing for me about my pregnancy is that I was hanging on the promise of feeling better by the second trimester. Truth is I was nauseated the entire time. It took me awhile but I learned to manage it. I ate CONSTANTLY. I started out underweight so the doctor wasn't concerned with my weight gain, until the end. I think I was still underweight at 20 weeks, and then I went on to gain 40 pounds in the last 20 weeks. But eating eased my symptoms. There was a Thai restaurant by my work that made a great ginger soup. I went there every day for lunch. Finally when my belly started popping out that realized why I was eating the soup every day. They didn't even take my order...just brought me my soup.

I don't know if this is still recommended but I took Unisom and B6 in combination and it really helped with the nausea and helped me sleep. (This was okayed by my gyno). Also for the very worst months when I couldn't keep anything down I took Zofran.

Toward the end of the pregnancy I let myself drink a tea every day (with caffeine) For some reason that always settled my symptoms.

I don't know if you're working or if you have other kids, but my plan was to stay home after we had a baby. I don't know why I continued to work so hard fighting the nausea every day, when I wasn't even going back. I just felt too loyal I guess. Anyhow, finally about 2 months before my daughter was born I quit working and I just felt so much better. I think the stress was really adding to the nausea. If you can at all set up a world where all you have to do is grow that little baby, which is a HUGE job, then do it. Don't feel guilty.

If you need to send my a private message you are welcome. I will try and encourage you in any way I can. My best friend had a baby 9 months before I got pregnant and she was sick the whole time too. I called her every day (didn't even think that she must be exhausted with a new baby) but she talked me through so much. Sometimes just having someone say, "I understand...you can do this" makes a huge difference.

Hang in there. IF you already have kids you know it's so worth it. YOU CAN DO IT! Rest, eat, ask for help, give yourself a break!

Good luck!!!

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Thanks everyone! I did call the OB and the nurse told me to stop the Zofran and start Unisom and B6. ;) I think I'm just so upset about it all because I was so relieved/excited to think there was something to help (the Zofran) and then come to find out.. it doesn't help!

This is my first child, so all of this is new to me. I think another thing that is hard is that I was feeling so bad for so long with undiagnosed Celiac, and then I started the diet and started feeling great... and then I immediately got pregnant and it was back to feeling crappy again (worse then before!).

Eating actually makes me feel better WHILE I'm eating, but as soon as I'm done I feel 10x worse than before.

I did make an appointment with my doctor tomorrow, so hopefully she'll have some ideas. :) Thanks again for being so supportive, helpful!

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I was fortunate with my morning sickness. I did find that the prenatals or even just multivitamins upset my stomach terribly. The OB recommended chewable or Gummy children's vitamins Double the dose. I did some reading and found that some of the chewables are OGF, but the many gummies are not. I ended up buying BelliBar or BellyBary Chewable multivitamins at Walgreens and at Babie's R Us. Instant relief from that version of nausea. Then keeping somekind of carbs in me at all times with steady doses of protien throughout the day helped. Mom asked me if I ever stop eating. No. I felt the worst when I didn't get a LOT of sleep and 1-2 naps during the day. Nausea would start in pretty quick.

This all sounds good, but the reality is that I was lucky. Oh, I stopped eating tomato sauces which were giving me killer heartburn. No decaf either. I hope that the nausea is short lived and by week 12-13, you have your life back. I still throw up every once in a while, but it isn't too bad. Best wishes on an easy pregnancy and congrats on your little one.

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Try some crystalized Ginger. Just a tiny bite. It's a natural way to help nausea. I use it for motion sickness even and it's safe for pregnant women. Also, peppermint. Either peppermint tea or peppermint candies, both help with nausea.

Good luck. Sending happy thoughts your way.

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I have Hypermesis Graviduram - which is severe and excessive nausea and vomiting in pregnancy - to the point where you lose a significant amount of weight and are unable to carry on w/ your daily life - so I know a lot about the different meds used.

Most importantly, Zofran - in pill form or ODT - is NOT gluten free! I took Zofran ODT my entire first pg w/o knowing this - and spent the whole 9 months in a vomiting, dehydrated fog. This pregnancy I have been taking the liquid form of Ondansetron (Zofran), and it has not caused the fogginess of the ODT. (For a month or so I took the IV form through my PICC line.)

I also take Unisom, and it has been amazing this pregnancy!

Let me know if you are still having problems.

www.helpher.org is a fantastic resource.

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Oh, also - if you are dehydrated the Zofran will not work. Make sure to get IV fluids if you're dehydrated and then you can try the liquid form of Zofran.

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There are lots of things you can try to help with "morning" sickness, and I would encourage you to do so, but time may be the only cure. I found that my blood sugar was FAR more sensitive during the early weeks of pregnancy, and there were lots of foods I couldn't stand. My first trimester was primarily fueled by avocados, really. And eggs.

It gets better for most people sometime in their second trimester (no magic 13 week lightswitch, though). The good news is that a strong response like this means that your body is switching very quickly into "support the pregnancy" mode, even if your stomach isn't quite ready for the effect of all the hormones.

Hang in there, and I hope you find something that works for you.

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nickelodeon, you posted over a month ago. Do you still have morning sickness? I'm not pregnant, but when I get nausea I have found the only thing that helps me is ginger ale and ginger cookies. Pamelas makes an awesome ginger cookie with almonds. Best thing for an upset stomach. I hope the rest of your pregnancy is less difficult.

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...

I also take Unisom, and it has been amazing this pregnancy!

Let me know if you are still having problems.

www.helpher.org is a fantastic resource.

Be careful of the Unisom. I have heard it can interfere with blood sugar levels. Not something to take very day IMHO. Melatonin might be safer. I just got off Unisom after taking it for over a month, and it is a big difference. I was starting to have cramps in my lower legs from it, and they have gone away now. Plus I actually feel awake during the day. Just be careful.

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Be careful of the Unisom. I have heard it can interfere with blood sugar levels. Not something to take very day IMHO. Melatonin might be safer. I just got off Unisom after taking it for over a month, and it is a big difference. I was starting to have cramps in my lower legs from it, and they have gone away now. Plus I actually feel awake during the day. Just be careful.

I've been on the Unisom for 30 weeks, and I haven't had a problem. I take 25 mg in the evening. I have a two page treatment protocol for my Hyperemesis that was discussed w/ my OB prior to treatment. My blood sugars have been fine, which is good considering I only manage to eat about 1000 calories a day. I had some Charlie horses in my lower legs, but they were due to a potassium deficiency. Once I was able to hold down a quality vitamin, they went away.

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Ok, I was taking twice that amount, 50 mg daily! 25 MG sounds much better. Some changes after I stopped it are: digestion is stronger, no charlie horses, more alert wakeful during the day. I can understand half the doseage being a safer option. Sounds ok! :)

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It is a sleeping pill, so I can see what it would make you sleepy. :) I only take it at night, and by this point it doesn't even make me tired anymore! I haven't noticed any digestion changes from it - although I've been on 16-24 mg of liquid Zofran a day, which makes me so constipated I wouldn't even be able to tell if something else was off.

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nicalodian, i hope your feeling better. maybe you will be doing better in your 2nd trimester. good luck to you.

i am 25 weeks along and for the first 12 weeks i was miserably sick. i never through up though so i didn't need to go the medicine route. it definately is no fun!

i have a question to those of you who take unisom. i have since the beginning of my pregnancy, experienced terrible insomnia. i average 4 hours of sleep per night! i tried tylenol pm, but it didn't help a bit. i wonder if this is something i should bring up to my dr.

thanks!

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It's definitely worth bringing up.

are you feeling better???

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are you feeling better???

Actually, I had a relapse and have been worse. I've been in the hospital since last Friday and will probably be here until I deliver. They said they'll induce this Friday though, so only a few more days! Although I would rather be at home with family on Thanksgiving than in the hospital.

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It's no good to be stuck in the hospital so long, especially during the holidays like this. I've spent more time in the hospital in the last year & a half than I thought I would wrack up during most of my lifetime lol. I always HATED being in the hospital. The 1 night I spent while I was pregnant I was soo uncomfortable that I got 1hr of sleep. Couldn't wait to get home, then when I was in the hospital those 4 days after my c-section was horrible too. Mostly it was the nurses, I swear I'd barely finish feeding my son, send him back to nursery & get to sleep & they'd wake me up again. I hope you have someone who can stay overnight with you to help you, especially if you have a c-section. After that I told my husband, "Sorry you don't fit on their couch but you & Mom or somebody have to work out a rotation to stay with me next time because I can't deal with that again" lol. They weren't pregnancy related but in Feb I spent about 3 or 4 days for pneumonia & then 4 or 5 days in March when I broke my leg & had surgery. I hope to never have another hospital stay besides having a baby again lol.

I hope that you get lots of visitors to keep you from getting lonely & I hope you start to feel better again. Good luck on Friday! Do you know what you're going to have?

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Thanks! Being in the hospital is no fun. I'm looking at spending 10 days straight here, as long as it's a vaginal delivery (which it should be). I am however going to beg the doc to let me go home just for Thursday, b/c I haven't seen my daughter since last Friday. My in-laws took her to their house five hours away so that my husband would still be able to go to work while I'm in the hospital. I'm glad she's with family, but I really miss her! (she's about 20 months old.)

We're having a girl - Sarah Grace.

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Ugh! I know what you mean about missing your little girl. When I was in the hospital in Feb & March they had the Swine Flu ban on the hospitals so my son couldn't come see me. When I was in with pneumonia my room was on a high enough floor that my in-laws drove up to the top of the parking garage & took him out & I could see him from the window in the hall. He was only about 7 months old then. Then 3wks later I was back with a broken leg. The day after my surgery, so 3rd day in hospital, they brought Keegan into the lobby & my husband wheeled me down to see him. Of course it wasn't the same thing as being able to spend 30min-1hr seeing him but at least it was better than nothing.

I really hope they let you go home, at least for a short time on Thursday. Congrats on your new baby girl in case I'm not on here again for a while :)

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sweetpea, how are you doing? are you still in the hospital? hope you are feeling well!

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Thanks for checking in! I was induced on 11-26. Sarah Grace is healthy, and I'm MUCH better!

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I have Hypermesis Graviduram - which is severe and excessive nausea and vomiting in pregnancy - to the point where you lose a significant amount of weight and are unable to carry on w/ your daily life - so I know a lot about the different meds used.

Most importantly, Zofran - in pill form or ODT - is NOT gluten free! I took Zofran ODT my entire first pg w/o knowing this - and spent the whole 9 months in a vomiting, dehydrated fog. This pregnancy I have been taking the liquid form of Ondansetron (Zofran), and it has not caused the fogginess of the ODT. (For a month or so I took the IV form through my PICC line.)

I also take Unisom, and it has been amazing this pregnancy!

Let me know if you are still having problems.

www.helpher.org is a fantastic resource.

I get my zofran through CVS and I was told it IS gluten-free. Corn Starch is used as a binder. I take it as needed and have had no problems with it.

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    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
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      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
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