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Told you don't have celiac, but do?


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6 replies to this topic

#1 lakb706

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Posted 03 January 2012 - 11:54 AM

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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#2 carecare

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Posted 03 January 2012 - 12:47 PM

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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#3 ravenwoodglass

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Posted 03 January 2012 - 01:21 PM

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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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#4 beebs

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Posted 03 January 2012 - 02:01 PM

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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HLA DQ8, gluten-free since January 2011

#5 researchmomma

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Posted 03 January 2012 - 02:13 PM

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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#6 Aly1

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Posted 03 January 2012 - 03:07 PM

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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#7 beebs

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Posted 03 January 2012 - 03:20 PM

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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HLA DQ8, gluten-free since January 2011


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