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Told you don't have celiac, but do?
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Anyone been told they dont have celiac and really did? my daughter has all the symptoms but has been told she doesnt have it. after upper and lower gi"s , barium, colonoscopys, blood tests, she has no diagnosis but still has very loose stools with so much pain it causes her to pass out. originally it was diagnosed ibs but that medicine did nothing. she is lactose intolerant. she doesnt eat dairy or if she has a little she takes lactaid pills. her stomach is bloated most of the time. we took her off wheat or so we thought..we had no idea how much stuff it is in. we are trying to do better but lack the information on all the names of gluten. i have been doing research and eliminating more foods. anyone have any suggestions? she is embarrassed by this and is afraid to go places incase she passes out while on the toilet.

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I hope she remains gluten free. How old is she? My husband gave up gluten just over 2 yrs ago. It took 5-6 months for the diarrhea to disappear but he was feeling so much better almost immediately despite the D while his intestines healed. He too had episodes of passing out and worried it would happen while out of the house. The passing out from intestine cramping scared me too! Once he got sick on the way north for my father's funeral. We had just switched driving because he was feeling so ill...and as I was driving he passed out in the passenger seat...kids saw it all and it was not pretty. I am so thankful he has not had one passing out incident since going gluten free!

Good luck. You are correct...gluten is in so many things you wouldn't ever think of...but once you find that out and find the products that don't contain gluten...you'll be doing just fine.

Oh, and my dh has not been tested for anything...he hates doctors.

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False negatives are not uncommon with celiac. My false negative results in blood tests cost me years and almost my life.

If you are done with testing do give the diet a good strict try. It does take some getting used to but we are here to help in any way we can. Read as much here as you can and ask anything you need to.

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I was told that I could not have celiac and that my genes were negative (which they aren't), fast forward 2 years of increasing sickness and pain. And basically now I will never get a diagnosis but a celiac specialist here says that there is no way it could be anything else, he is certain I have celiac. Doh - stupid Drs, Stupid tests!!!

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I was told that I could not have celiac and that my genes were negative (which they aren't), fast forward 2 years of increasing sickness and pain. And basically now I will never get a diagnosis but a celiac specialist here says that there is no way it could be anything else, he is certain I have celiac. Doh - stupid Drs, Stupid tests!!!

Beebs who told you that you didn't have the genes and how did you find out you did? Thanks!

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It IS hard to avoid gluten even with all the so-called "gluten free" items on the market. So far I'm having a pretty high failure rate, I react to a lot of the stuff on the market. The one tried-and-true things is to go back to the basics and just cut out all processed food until you are feeling good and your symptoms are stable - then try one processed item for several days before adding another. Perhaps you are at the point where you should do that with your daughter.

Things that have tripped me up:

Spices. I got sick on the ones we had so we replaced them. I've heard here single-ingredient ones from McCormick are good, that's what we're using now and it seems fine.

Random ingredients. Read EVERYTHING, before you cook with it - even the little stuff that seems it should be gluten-free. I glutened myself for 2 whole weeks eating "gluten-free" muffins my hubby made for me. I got so sick finally that I went through our cupboards and discovered the culprit ingredient - baking soda that had a label on the box saying it had been processed alongside wheat. We wouldn't have thought to worry about baking soda, but there you have it.

Gluten-free oats. I assumed I wouldn't be one of the people that react to them. I was wrong.

At this point I am tired of feeling sick so I am not eating anything but meat and veggies and rice. And it's working! I think that's the way to go for your girl. Good luck!!

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Beebs who told you that you didn't have the genes and how did you find out you did? Thanks!

My GP, I am thinking two things here either a) he didn't know enough about the tests so when he ordered the panel he thought that was the genes as well or B) he forgot to order them, but because he already told me he did, he fibbed to cover himself. Because I don't have classic symptoms he thought he'd be safe enough anyway.

So I found out I did because one of the most respected celiac doctors here said he'd see me because I had such severe symptoms but negative genes and bloods and he asked for a copy of all my tests - which is when it came to light that the genes hadn't been done. So I had my genes tested and yes I have DQ8.

I guess the other interesting thing is that my reaction to eating gluten is life threatening - I get intussusception (where the bowel kind of eats itself TMI I know) its considered a medical emergency - and yet my bloods where negative. So basically - if someone has negative bloods I never think that means no celiac - same as with the biopsy - this stuff gets missed all the time!

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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