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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.

Answers For Nausea
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19 posts in this topic

I posted before that I was nauseous for like a month and we finally figured out it was my supplements.

I went off iron and felt a little better but I've still been having problems. My gut is so sensitive I am on a bland diet again and I've been off iron for a week.

After Chad posted that his Vitamin D had soy in it, I decided to do some checking. Turns out my vitamin D was made from soybean oil and I have very bad intolerance to soy. I had checked for gluten but not soy.

I took it for about a month!!!! It feels like when I first went gluten free and so many things bothered me. I wonder if soy causes damage to the villi. Anybody know?

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I posted before that I was nauseous for like a month and we finally figured out it was my supplements.

I went off iron and felt a little better but I've still been having problems. My gut is so sensitive I am on a bland diet again and I've been off iron for a week.

After Chad posted that his Vitamin D had soy in it, I decided to do some checking. Turns out my vitamin D was made from soybean oil and I have very bad intolerance to soy. I had checked for gluten but not soy.

I took it for about a month!!!! It feels like when I first went gluten free and so many things bothered me. I wonder if soy causes damage to the villi. Anybody know?

Other things can, but I don't remember or recall reading about soy causing atrophy.

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Other things can, but I don't remember or recall reading about soy causing atrophy.

Good. Then it's just irritation. What a bummer. I was so overwhelmed with getting out of a long hospital stay and dealing with new illness and whatnot, I read the label and it said wheat free, gluten free and dairy free and I didn't read further. I can't believe I did that to myself.

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I read this in an article I bookmarked from Medscape. I believe the authors are gastroenterologists from Sweden.

http://www.medscape.com/viewarticle/405488_2

In part, it says:

"Although villous atrophy is not exclusive of celiac disease, it is considered a crucial finding. Other causes of blunted villi include tropical sprue, malnutrition, intolerance to cow's milk, soy protein intolerance, and infectious gastroenteritis. However, most of these conditions can be readily excluded on the basis of clinical history and laboratory data."

I am not sure it means that your recent reaction is because of villous blunting, but maybe just your intolerance to soy is flaring up??

Off the subject a bit, but I have to take D myself because of a major deficiency and I use NOW brands. No soy, gluten, dairy, etc. :)

Hope your nausea clears up pronto!

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Thanks Irishheart. I will get NOW brand.

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Thanks Irishheart. I will get NOW brand.

I pestered the company to make sure and they wrote me a nice email explaining their testing procedure. Chemist hubby insisted we test all my supps with glutentox kit--tests for less than 5ppm . (for whatever that is worth) All "good to go"!

We take no chances!! :lol:

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I pestered the company to make sure and they wrote me a nice email explaining their testing procedure. Chemist hubby insisted we test all my supps with glutentox kit--tests for less than 5ppm . (for whatever that is worth) All "good to go"!

We take no chances!! :lol:

Your hubby is a keeper!

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We just did the gastrointestinal tract at Uni. When damage occurs it becomes difficult for the gut lining to keep things out of the blood that shouldn't be there. It might be you are reacting to the absorption of larger soy molecules than normal. It's also possible that you are reacting to the oestrogenic effects soy has. Have you had any problems with oestrogen recently? If your docs can balance your hormones you may get some relief and find that you can eat things you have been sensitive to (not gluten!). I am taking a herbal remedy that I can say is really helping me. I am behaving better this end of cycle than I have done in years - and I'm not wanting to hate/slander my estranged husband so something must be working! The heat/sweats I was feeling have disappeared and I am now able to eat cheese! Only been on it eight days (the remedy that is, not the cheese!)

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Your hubby is a keeper!

Oh boy, is he ever! :lol: and he makes the best gluten-free bread, too. :)

If I had not had him to keep me sane the last five years of this nightmare, I do not know what would have become of me.

He's my rock and my heartbeat.

Fortunately, he stuck by me when I became so inexplicably ill and incapacitated. Sadly, so many others on here report otherwise. What a shame. Who kicks someone when they are down--when they need them the most? :o Tragic.

I tell him every day how grateful I am that he never gave up on me. He thanks ME for persisting in getting answers and saving my own life. ;)

Hope you feel better soon! :)

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We just did the gastrointestinal tract at Uni. When damage occurs it becomes difficult for the gut lining to keep things out of the blood that shouldn't be there. It might be you are reacting to the absorption of larger soy molecules than normal. It's also possible that you are reacting to the oestrogenic effects soy has.

Excellent point! Thanks for posting this. I think this is often overlooked when people wonder why they still do not feel so well, even after giving up gluten. As long as there is still damage, there will still be system-wide issues.

Had nearly the same conversation with my GI doc at the last check up. I keep asking him why I react so violently to medications and why I have so much muscle/tissue pain and he said....damage from celiac and gluten toxicity can cause all of that. Be patient. It will resolve. (yeah, okay, doc ---easy for you to say. I'm in pain hell. :rolleyes: )

This is also why I do not consume soy. Wreaks havoc with the hormone levels :angry: .

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I have been feeling so sad about this. So upset that I did this to myself. I was just so overwhelmed with everything going on at the time.

I went off the iron and Vitamin D a week ago and it's getting a bit better but still not great. Still nauseous today and my appetite is low. GI doc said all my blood tests were good. Celiac titers good, so it's just a matter of wait and let it heal.

I did this 2 years ago healing from gluten and now this. So so sad. I did some crying today like I do everyday lately.

Slogging through the days feeling bad sucks. I was doing so well until mid September. Then my world crashed. My hormones went nuts. I ended up in the hospital and it's been one thing after another since then.

I'm getting off this roller coaster! I want to ride the kiddie rides now.

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I'm getting off this roller coaster! I want to ride the kiddie rides now.

I hear you--- and me too, kiddo. Me too! <_< I am so tired of always feeling like crap and having SO many ramifications from long unDXed celiac. It seems endless but I never give up.

I just keep hanging on.

Best wishes to you. Get better soon.

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Wishing you well! Hope you feel better soon!

(I've done this too. I got so excited by Udi's chocolate chip cookies at the store one day that they didn't have gluten or soy in them that I didn't see the big fat glaring word "butter." Body was quite unhappy.)

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Ditto Bigbird and irishheart. Hope you feel better soon sandsurfgirl! It's tough. Sounds like you are going through a low patch. Any time you need to talk, luckily you have all of us!!!

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Ditto Bigbird and irishheart. Hope you feel better soon sandsurfgirl! It's tough. Sounds like you are going through a low patch. Any time you need to talk, luckily you have all of us!!!

You guys are a lifeline! I was pretty down today. I went to the park with a bunch of moms and kids and that made me feel so much better. We homeschool, so that is extra challenge on top of everything else.

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Slogging through the days feeling bad sucks. I was doing so well until mid September. Then my world crashed. My hormones went nuts. I ended up in the hospital and it's been one thing after another since then.

You wrote this part in a prior post, but I did not wish to pry. I am wondering...Is there another illness going on that would explain your recent bout with gut/nausea issues besides soybean oil??

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You wrote this part in a prior post, but I did not wish to pry. I am wondering...Is there another illness going on that would explain your recent bout with gut/nausea issues besides soybean oil??

My adrenal glands weren't making enough aldosterone which regulates kidney function. It took 3 weeks to figure out what was going on and in that time my kidneys were dumping my salt and water. Eventually I was so dehydrated and my electrolytes were scary low. I ended up in the hospital for 10 days. For 7 days they were waiting on labs to figure out what was wrong.

I have to wonder if celiac affected my adrenal glands.

They also found an adrenal tumor and I'm being tested for Cushings, which is a tumor on the adrenal or pituitary gland that secretes its own cortisol. So far it's looking like I probably don't have it, buy they are being very thorough in testing me. Again, gotta wonder about celiac being related.

I got stable on the medication for the aldosterone deficiency, but then they raised my thyroid meds too high and for the first week out of the hospital I was very sick from that.

Then I got really nauseous after going on the supplements but I got the flu at the same time. They blamed the flu for 3 weeks. The flu went away and the nausea stayed. That's when I figured out the iron and the vitamin D with soybean oil had been trashing my gut for an entire MONTH! So frustrating.

All together it's been 10 weeks of health issues. If I hadn't been taking the iron and vitamin D I would be doing great now. But now I have gut healing to do.... again. Been there done that and I don't want to be there again. Waaaa!

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Well, you have had quite an ordeal (sorry :( ) and I have to wonder if the nausea isn't a result of all that.

Iron supplementation can cause both nausea and serious constipation.

Adrenal insufficiency causes nausea, among other symptoms. Didn't the doctor tell you this? He/she should have.

The Vit D/soybean oil is probably the least likely culprit.

From everything I have read, there is no organ that is not affected in celiac disease. The adrenal glands and various hormones are most definitely affected. My cortisol levels were all over the place and adrenal fatigue caused multiple symptoms, including horrific insomnia and hyper-activity and agitation. For nearly 2 years, I barely slept 3 or 4 hours a night. My hair fell out and I was a wreck of central nervous system dysfunction.

When a body is under autoimmune attack, the adrenal glands are taxed greatly. I believe Addison's disease is now linked to celiac disease. I was told I had Hashimoto's thyroiditis, put on meds for nearly 2 years and I went HYPERthyroid. I knew it was wrong for me and had further testing done. As it turns out, I am on NO meds now and my thyroid functions normally.

I am fortunate I stopped the meds in time. Many mistakes were made in the course of several years of "medical care". :rolleyes:

I have to wonder if your continuing nausea isn't from the adrenal dysfunction and that hopefully, it will abate in time, with treatment and the gluten-free diet. Hope so. I had nausea for a long time and it just plain sucked.

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Irishheart, I just don't know. I've been off the supplements for a week. Felt better for a couple of days then Thanksgiving rich foods made me sick again. It's been improving each day, but it's still there this morning. Mild, but there.

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
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      I have not. I'll talk to my doctor about it
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