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Can 2 Negatives And A Weak + Mean Celiac?


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#1 Guest_lostweekend_*

 
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Posted 15 June 2006 - 12:44 PM

Hello, I am new here. I have had stomach problems for about 15 years now which have slowly gotten worse over time. I was always told I have IBS. About 3 years ago I got some bloodwork done and my doctor tested me for celiac. She said 2 were negative and one was weakly positive at a 28. I went and saw a GI who said "You are not Irish, you're not super thin, I see 100 people a month like you, it's IBS". I didn't follow up with it and left the office. So skip to this year, the balls of my feet hurt so bad in the morning I can barely make it down the stairs, I'm tired a lot, my one hand feels sore in the joints all the time and my mental health has gone to the birds. My anxiety has been so high that I was put on Xanax and the therapist I am seeing thinks I have obessive-compulsive disorder. This is very upsetting because for 29 years of my life other than the IBS I haven't been mentally unstable at all. My question to anyone whose read this far (and thank you if you have) is it possible to have 2 negative and a weak positive and have celiac? I just got some bloodwork done again and won't know until tomorrow or Monday but I was off gluten for a week and the doctor said "Oh that won't affect it" when I keep thinking it will.

Any advice or comments are appreciated. Thank you-
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#2 ravenwoodglass

 
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Posted 15 June 2006 - 01:55 PM

Hello, I am new here. I have had stomach problems for about 15 years now which have slowly gotten worse over time. I was always told I have IBS. About 3 years ago I got some bloodwork done and my doctor tested me for celiac. She said 2 were negative and one was weakly positive at a 28. I went and saw a GI who said "You are not Irish, you're not super thin, I see 100 people a month like you, it's IBS". I didn't follow up with it and left the office. So skip to this year, the balls of my feet hurt so bad in the morning I can barely make it down the stairs, I'm tired a lot, my one hand feels sore in the joints all the time and my mental health has gone to the birds. My anxiety has been so high that I was put on Xanax and the therapist I am seeing thinks I have obessive-compulsive disorder. This is very upsetting because for 29 years of my life other than the IBS I haven't been mentally unstable at all. My question to anyone whose read this far (and thank you if you have) is it possible to have 2 negative and a weak positive and have celiac? I just got some bloodwork done again and won't know until tomorrow or Monday but I was off gluten for a week and the doctor said "Oh that won't affect it" when I keep thinking it will.

Any advice or comments are appreciated. Thank you-




YES it is also possible to have all the tests come out negative and still have full blown celiac (raise my hands waving). You should get onto the diet as soon as you can and welcome to the boards. I am sure you will find them very helpful.
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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)

#3 CarlaB

 
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Posted 15 June 2006 - 02:08 PM

My blood tests and endoscopy were both negative. I went to Enterolab and got a strong positive. I feel like a different person now that I'm off gluten.
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diagnosed with Lyme Disease 12/06

#4 Guest_lostweekend_*

 
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Posted 15 June 2006 - 02:55 PM

My blood tests and endoscopy were both negative. I went to Enterolab and got a strong positive. I feel like a different person now that I'm off gluten.


How do you feel different? What has changed? I am just nervous because I'd like to have an answer to pinpoint all my anxiety lately. I've heard sometimes celiac disease can affect your mental health but I didn't really find exactly how. How much was the test you confimed yourself with? Thank you.

YES it is also possible to have all the tests come out negative and still have full blown celiac (raise my hands waving). You should get onto the diet as soon as you can and welcome to the boards. I am sure you will find them very helpful.


I did start the diet but then went off for 3 days. I felt horrible, I woke up with such bad mood swings and aches in my feet again. Sometimes I often wonder if everyone just sorta feels achey or tired from time to time or if it's just me. I'm 29 and feel like I've aged in dog years.
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#5 Kaycee

 
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Posted 15 June 2006 - 09:02 PM

I personally find it quite offensive, that even though one test returned weakly positive, the doctor said if you weren't Irish and not superthin, then it must be IBS!

I am not superthin, nor am I Irish, just a teeny bit. But coeliacs come in all shapes and sizes!

I was diagnosed as weakly positive, and that was after 6 weeks being gluten free, and have stuck to the gluten free diet as well as I can. I have had two more blood tests and both still came back weakly positive. So I have been trying extra hard to avoid it at all costs, but it must be getting in somewhere. And now, I know whenever I eat a bit of gluten, as it makes me ill. I must admit I was not terribly ill with coeliac before, but now the gluten hits me like a ton of bricks.

About mental capacity. When I eat gluten I just feel so out of it. Make silly mistakes and get my words muddled up, and at times get a bit depressed, probably at my stupidity. It seems to be only temporary, but it is so frustrating. Family and friends think it is funny. But it is a worry when I am driving and I feel out of it. Should I let everybody know when I have been glutened and let them know when I am on the road?


I also get the aches and pains from gluten. Not too bad, but more like what it used to be, achy joints. I have found I have a brain after all, as I get headaches now too. I know I am just falling apart, but I am learning so much about myself, and it is good. I too now suffer from anxiety attacks, especially when I think too much about food.

So much for the cool calm collected person I was without too many worries. I think what gets me through is my sense of humour. It is a bit dry and can take a bit of getting used to, but I know I am having a bad day when that has gone.

Laughter is the best medicine, so try and find your sense of humour again, watch a funny movie. Ask for everybody's favourite joke. Just a thought.

The soreness in the balls of your feet could be spur heels. Does it get better as the day goes on, which they usually do, and then absolute agony the next day.

Hope this makes you feel better, but I wouldn't write off coeliac for yourself just yet.

Good luck with your blood test results. I don't know if you want them positive or not, but if they were, it would make sense for all the symptoms you have.

God Bless

Cathy
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#6 BRUMI1968

 
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Posted 16 June 2006 - 03:17 PM

One of the super fun things about Celiac, is that your absorption of necessary vitamins and minerals is nil. Thus, the symptoms of Celiac can be just about anything caused by malnutrition.

I had aching thighs and low back, and I think it turned out to be serious Vitamin B12 deficiency. If you haven't been checked for that, you should be.

I have been told I have IBS since I was in my teens (I'm 37) -- making it about 33 years or so I think I've probably had Celiac. Personally, and I know not all folks agree with me on this, I think IBS is a stand in for "I don't know what's wrong with you, and either me or your insurance company are unwilling to do the appropriate testing to find out what is irritating your bowels". You know your system is irritated for crying out loud...you want to know why.

So a month ago I asked for a Celiac panel myself. One of them came back positive (35 when 20-30 is mostly positive, and anything above is definite) and the other three bits of the test came back negative. I went on gluten free right away, and certain things got better instantly. I stopped itching. I started sleeping through the night (never even noticed that I hadn't been). My canker sores went away. Other things got worse - I became constipated for the first time in years (I have always been on the constipation [C] end of Celiac, but after quitting wheat [not gluten] two years ago, that had gotten better), and I felt emotionally drained. BUT...after I started getting the B12 shots and taking vitamins sublingually (under the tongue), i started to feel better. And after adjusting my diet to include more fiber and some probiotics, the C went away too. I feel as though I'm on the mend.

The mental fog and emotional rawness come and go. But the ANXIETY, for me, is gone. That disappeared when I quit wheat.

Anyway, I've rambed, but felt like what you've said really rung a bell with me. One thing I didn't expect with stopping the gluten - I hardly ever think about my stomach anymore. I realized that for years, my stomach has ALWAYS been on my mind.

Anyway, I'm glad you're here and I hope you decide to try the gluten-free diet no matter what your diagnosis. As far as I can tell, the grains that folks think of of as "alternatives" or for hippies or whatever, are better for you anyway...and taste good too.
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#7 nettiebeads

 
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Posted 16 June 2006 - 04:39 PM

Oh, yes celiac can cause major brain problems. For me, when I've had gluten, I get major "fog", depression, irritiablity - My husband's breathing will make me want to jump out of my skin. My dr is of the opinion that the current common tests for celiac probably aren't sensitive enough to be completely reliable. There may be more things that could be tested but the medical community doesn't know about them yet. And believe it or not, there is a growing faction in the medical field that thinks that the diet challenge is the most accurate test. You feel lousy, lots of stomach and intenstinal problems along with aches and pains. You go gluten free for three weeks or so. If you reintroduce gluten and the same old problems reappear, you got celiac! You alone know your body the best. If you felt better while gluten-free, then you've got problems with gluten. Watch out for all the other places gluten can hide like in meds and toiletries. Good luck and keep asking questions!
People here are very happy to help.
Annette
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#8 Guest_lostweekend_*

 
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Posted 16 June 2006 - 07:45 PM

One of the super fun things about Celiac, is that your absorption of necessary vitamins and minerals is nil. Thus, the symptoms of Celiac can be just about anything caused by malnutrition.

I had aching thighs and low back, and I think it turned out to be serious Vitamin B12 deficiency. If you haven't been checked for that, you should be.

I have been told I have IBS since I was in my teens (I'm 37) -- making it about 33 years or so I think I've probably had Celiac. Personally, and I know not all folks agree with me on this, I think IBS is a stand in for "I don't know what's wrong with you, and either me or your insurance company are unwilling to do the appropriate testing to find out what is irritating your bowels". You know your system is irritated for crying out loud...you want to know why.

So a month ago I asked for a Celiac panel myself. One of them came back positive (35 when 20-30 is mostly positive, and anything above is definite) and the other three bits of the test came back negative. I went on gluten free right away, and certain things got better instantly. I stopped itching. I started sleeping through the night (never even noticed that I hadn't been). My canker sores went away. Other things got worse - I became constipated for the first time in years (I have always been on the constipation [C] end of Celiac, but after quitting wheat [not gluten] two years ago, that had gotten better), and I felt emotionally drained. BUT...after I started getting the B12 shots and taking vitamins sublingually (under the tongue), i started to feel better. And after adjusting my diet to include more fiber and some probiotics, the C went away too. I feel as though I'm on the mend.

The mental fog and emotional rawness come and go. But the ANXIETY, for me, is gone. That disappeared when I quit wheat.

Anyway, I've rambed, but felt like what you've said really rung a bell with me. One thing I didn't expect with stopping the gluten - I hardly ever think about my stomach anymore. I realized that for years, my stomach has ALWAYS been on my mind.

Anyway, I'm glad you're here and I hope you decide to try the gluten-free diet no matter what your diagnosis. As far as I can tell, the grains that folks think of of as "alternatives" or for hippies or whatever, are better for you anyway...and taste good too.


Thank you, I am glad to be here. :)

My mental health this year has been so offbalance. I do not feel like myself anymore. I started really digging deep why all this was happening to me. I've always had anxiety with the IBS mainly because of the IBS! That mental fog people talk about needs to lift soon. I got to points and this is sooo wacky where I thought my husband was playing tricks on me. I'd turn off a light, open the dryer or start the washer and go back and forget all I did. Skip ahead 10 mins later and I see everything on and washing and freak out. This happened several times where I thought either someone was playing tricks on me or a ghost liked my laundry.

I went off gluten for a week and I said to my husband that I feel like I had no emotion and I think it was rather I had no anxiety. I always thought about my stomach too- every day for the past 15 years. It controls my life. Where I can go, what times I eat and who I eat with, etc. It's horrible. Irritable Bowel means something is irritating your bowels and obviously we mostly put food into our stomachs so there is really the answer. Canker sores, I've had those since I was as young as a can remember. I was always in the nurses office getting this stuff called Orabase-B stuck on huge canker sores. I get them very easily even to this day and they last for 1-2 weeks with me.

I also don't see how you can be weakly positive for something but apparently you can get false-positives. I don't know my results yet and I have to admit I am pretty nervous. I just want to hear an answer for all this. I started eating gluten-free again and I will see what happens. I did feel better but I'm hoping I wasn't just too much hope thinking this was my problem. One big real change I saw was constipation for me which is a huge difference. That within itself speaks volumes. :D

Oh, yes celiac can cause major brain problems. For me, when I've had gluten, I get major "fog", depression, irritiablity - My husband's breathing will make me want to jump out of my skin. My dr is of the opinion that the current common tests for celiac probably aren't sensitive enough to be completely reliable. There may be more things that could be tested but the medical community doesn't know about them yet. And believe it or not, there is a growing faction in the medical field that thinks that the diet challenge is the most accurate test. You feel lousy, lots of stomach and intenstinal problems along with aches and pains. You go gluten free for three weeks or so. If you reintroduce gluten and the same old problems reappear, you got celiac! You alone know your body the best. If you felt better while gluten-free, then you've got problems with gluten. Watch out for all the other places gluten can hide like in meds and toiletries. Good luck and keep asking questions!
People here are very happy to help.
Annette

Watch out for all the other places gluten can hide like in meds and toiletries--

This is the one area I am lost on- what about makeup? Is there a list?

I had to laugh about the breathing thing you spoke of. Sadly I feel like that with my kids. I feel like my emotions are out of control all the time and wonder how people manage stress so well. I feel emotional about everything. I cry at the drop of a hat and feel basically like my hormones are turned on high. The Xanax is the only thing helping me calm down and I'm on such a low dose and soon I won't be able to get that.

I'm hoping either way this diet helps me, it's worth a try even not knowing the results from how much agony I've been in....
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#9 ravenwoodglass

 
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Posted 17 June 2006 - 08:25 AM

Thank you, I am glad to be here. :)



I also don't see how you can be weakly positive for something but apparently you can get false-positives.



I wanted to correct this. There are no such things as a false positive, there are however false negatives. With gluten if the test is even weakly positive you need to be gluten free.
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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)

#10 Guest_lostweekend_*

 
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Posted 17 June 2006 - 12:05 PM

I wanted to correct this. There are no such things as a false positive, there are however false negatives. With gluten if the test is even weakly positive you need to be gluten free.


The main thing I am running into with doctors is that you can have false-positives and not have celiac. I just don't understand how you can test positive at all for something that's really not there.
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#11 ravenwoodglass

 
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Posted 17 June 2006 - 01:19 PM

The main thing I am running into with doctors is that you can have false-positives and not have celiac. I just don't understand how you can test positive at all for something that's really not there.



I don't understand them saying that either. Perhaps someone will know but from everything I have read and experienced there are no false positives. There are some idiot doctors that will test after you have been gluten-free and then say 'See thats negative you never had it in the first place'. Regardless of what the doctors say if you feel better off gluten that is what you need to do.
  • 0
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)

#12 Jennas-auntie

 
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Posted 17 June 2006 - 01:34 PM

I don't understand them saying that either. Perhaps someone will know but from everything I have read and experienced there are no false positives. There are some idiot doctors that will test after you have been gluten-free and then say 'See thats negative you never had it in the first place'. Regardless of what the doctors say if you feel better off gluten that is what you need to do.


The only thing I have run into in the literature is that I've read in certain cases the tTG can be elevated from more than just celiac, basically it can be elevated in giardia and in certain protein intolerances (like some people have with chicken or tuna) and some incredibly rare genetic disorders. However, if your EMA is positive, that is highly celiac specific-you won't get a "false" positive on that. If your EMA is positive, by golly you've got celiac. Plus, if you have an elevated tTG, even if you DO have a protein intolerance it doesn't rule out celiac. I've tried to read up a bit on this because they were giving that line to my niece's parents also for a while, but when they did the biopsy finally that was definitely positive for celiac. The only one I've read on that can be "vague" like that is tTG, but even then, remember, even if you have giardia or a protein intolerance that doesn't mean you can't also have celiac.
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#13 Wandering Hermit

 
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Posted 17 June 2006 - 02:31 PM

The specificities of these assays are not 100%. That means false positives are always a statistical possibility. No test, of anything, is perfect.

I've also read that AGA IgG can be high for conditions other than celiac disease. I read that in a journal article I found while browsing.

This link says IgG AGA found positive in 10% of "normals." Also says may not be reliable.

From an article by Joseph Murray:

The sensitivity and specificity of AGA tests are known to vary. Our study confirms the results of previous studies that indicated that the specificity of AGA-IgA and AGA-IgG tests does not approach that of the EMA test. ... A positive AGA-IgA test does not replace the need for a more accurate test to make the diagnosis of celiac disease.


Link.

Or this:

If all of the tests are positive then they are pretty accurate, GT 95% right. However, there are several reasons and circumstances when they are not so accurate. IgA and IgG are two different varieties of antibodies we have in our immune systems. The IgA gliadin and IgA endomysial tests are the most accurate and also become negative relatively quickly after stopping gluten (3-6 months). The IgG is not as specific (it can be positive in non celiacs). However it is important to do both, as about 4% of celiacs have low enough levels of IgA to make the IgA tests inaccurate.

from here.

Also in thjat link Dr. Kumar states: "If the tests are performed using well standardized tests with known positive and negative predictive values then you can make the statement that if the serological tests are negative celiac disease can virtually be ruled out. The problem is that some of these assays, especially the gliadin, can give you false positive results." and "In patients with selective IgA deficiency only the IgG antigliadin antibody may be present, however, this antibody is less specific. It means that the IgG-type antigliadin antibody may be present in otherwise normal individuals."

This notion that one positive test means 100% certainty of celiac disease is simply not true.
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#14 Guest_lostweekend_*

 
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Posted 19 June 2006 - 08:31 AM

Got my results and she said I was normal but if I felt the diet was helping to continue. Really annoys me since I was off gluten for over a week and got tested. I don't doubt the results it's just frustrating. :huh:
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