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Over 25 Years Of Chasing A Diagnosis, Please Help, Elevated Ttg Iga

ttg iga fibromylagia constipation extreme fatigue teeth enamel dying tests blood help

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#1 rcheltrvel

 
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Posted 06 March 2014 - 10:14 PM

Hi, I am new to these boards and am looking for some advice. I have been doing the Amazing doctor race for over 25 years now and the best anyone can come up with is Chronic Fatigue Syndrome / Fibromyalgia. I have been battling this illness for over 25 years now and I just need something to end. About every few years I see a new doctor who wants to figure out what I "really" have besides Fibro. They do some tests, send me to some specialists and all roads lead back to Fibromyalgia. UNTIL LAST WEEK.

I just moved to another state and started with a new Dr. A nurse practitioner with her doctorate in medicine and a well known diagnostician around here. So I went with intentions of getting back on Fibromylagia meds.

Rewind, about 3 1/2 years ago I was given a glimmer of hope for all my problems. Cymbolta. Yes, it helped. Made some of my joint pain go away, made me a little less angry. But that was about it. I lasted about a year and then I wanted to try and get pregnant again (I already have one child). So I had to go off it. Going off this medication really pin pointed the decline of my health. Two miscarriage after that and now I can't get pregnant after being able to get pregnant 5 times quick in my life. Fertility doctor has no answer despite my eggs being a little less great due to my age. But he said it is still possible. All my fertility tests normal.

Back to the new nurse practitioner. Of course, like so many, after seeing me for my initial visit, reading my thousands of medical records, listening to me list my host of one million symptoms from the past 25 years (chronic sleep deprivation, chronic fatigue, no memory, exercise intolerance, massive brain fog getting worse, chills that come and go, stomach bloating, chronic constipation, random bouts of IBS, unexplained weigh gain, thyroid cancer (fine now and levels are always fine), Wolf Parkinsons White (heart was ablated, fine now with that), eye swelling upon waking like an allergic reaction, massive scabs and head dandruff, pin and needles in feet and hands, arthritis in neck, chronic neck pain after injury, burning muscles and eyes after exertion, weird bladder issues, choliostatis of the liver when pregnant, muscle stiffness that is worse on awaking, chronic headaches plus migraines (sugar induced I think), weird chemical sensitives that come and go over the years, late puberty, miscarriage and infertility for no reason, loss of tooth enamel for no reason all of the sudden ( black on my tooth but dentist said loss of enamel, nothing else), stomach acid, cystic acne, irregular periods all of the sudden in the last few years, weird rashes and extreme itching for no reason, concentration issues, ringing in ears, eye twitching, eye sensitivity to light and night driving, hoarseness, muscle cramps, etc... And the list goes on), she decided she wanted to get to the bottom of "this Fibromylagia", and she actually used quotes with her fingers when she said it.

She looked at some older tests I have, said I had some slight elevated liver enzymes (I have had this for years and years), and wanted to send me for a stomach ultrasound. It came back fine. Nothing wrong. The she sent me for a host of blood work. Different panels, didn't tell me what they were. Went and came back for the results. She said again I have slightly elevated liver enzymes, slight elevated cholesterol level (which I had had before as well despite eating a low fat diet my whole life). She said I have an elevated cortisol level, she said it could be why I can't lose weight but I needed to see an endo for it. I also had a large vitamin D deficiency requiring prescription in a huge dose once a week. The she hits me with the whopper. She did something called a Celiac panel and I have Celiacs. If you want to live, you can't eat wheat. No gluten, ever again.

WHAT??? This women must have been out of her mind. Did she know who she was talking to? I am the carb queen. I live for it. Bagels, cereal, low fat cookies. No way lady, you must be wrong. There is no way I can stop eating that stuff. Quickly tears swelled up in my eyes. First I thought she was some holistic freak. Then I doubted it because no doctor has ever told me I had anything wrong with my blood work. I just didn't believe her. I left mad and sad. I went home to process.

Here we're my numbers....

Immunoglobulin A : 128 (normal, range 70-400)
Gliadin IGA Deamidated: 2.1 (normal, <20)
Transglutaminase IGA Autoabe: 20.8 (out of range <15.1)

I started reading and reading and reading. Could this really be? Could this be the answer I have been chasing for the past 25 years? I read more and started to wonder why she didn't advise me to go see a Gastro, the next obvious choice. She scared me. I immediately stopped gluten, just in case and to see what would happen. She said it would take time but maybe in two weeks I would have some relief. I researched, dropped $300 on gluten free products, bought every type of everything you could imagine, got schooled by another gluten free person, etc... I also immediately called her asking why she didn't recommend me for an upper endoscopy. She said she didn't need to, this is what I have. I asked her for a recommendation anyway. I had to know, I have to know. There is no way I can not know. I make the appointment for five days later and I go on my gluten free way. Five days of gluten free, maybe a little more clear but not so much difference. My stomach was doing circles, it's like my system didn't know what to do. I was in the bathroom straight for the first 24 hours, which is usually the opposite of what happens to me.

Five days later, I go to the 1st Gastro. His nurse practitioner sakes me some questions, takes my vitals and puts me in the Dr's office. The guy walks in, doesn't shake my hand or introduce himself, looks over my blood for two seconds, says I don't know if you really have this but I will do the test, signs me up and walks out. Five whole minutes this jerk spent with me and asked me nothing. He says, don't worry, you can eat gluten. It doesn't matter either way, it won't effect the test. I asked him about the liver and the vitamin D, he replies it has nothing to do with any of this. I leave with a endoscopy planned for a week from that day. I left feeling upset. I got home and decided this was not a doctor I wanted to give my money to nor is he a doctor I want doing a procedure one me. What happens if I don't have Celiacs and I still have to deal with this guy to help me find something else? No way.

I left and went to a dinner. I ate my first dose of gluten in form of two pieces of rye bread. Instant bloating. Wow, that's weird. I never even realized all these years that feeling in my stomach was bloating. I always just thought I could feel myself gaining weight every time I ate a carb. Lol. I continued that night with a bowl of ziti. It happened again. Wow. I went on to eat some cheese crackers before bed, just to see what would happen. Besides feeling like crap all day and exhausted (as usual), I woke in the morning with massive swelling under my eyes, like I had bee stings. Black circles with bee stings on top. You could see the blood vessels popping out. Stomach rumbling all the next day. Constipation comes back. I was shocked. Cold adding the gluten back in really make me feel something? I never in my life associated any of my pain or ailments with bread or pasta, never with gluten, I didn't even know what gluten was till five days ago. Wow! I decided from that moment on, no matter what, I NEVER WANT TO EAT GLUTEN AGAIN. It just didn't make me feel good. Since I added it back, my body is in what I call a "serious Fibromyalgia state". Eyes burning, body hurting, feels like I haven't slept in 10 years. My cognitive is so, so bad. Stomach is turning, bloated. And guess who just joined me? My hemmiroid decided to make an appearance all of the sudden. It's been a while but we reunite. Thanks!

I go home, get some good recommendations from family to a good Gasto. I go. He spends an hour with me, learning my case, listening to everything from the beginning. Checking all my blood. Says this is a possibility that I have Celiacs, he sees it more and more and if I don't have celiacs, I probably have a sensitivity to gluten. He tells me he wants to do the endoscopy but now that I ate gluten free for five days, he wants to be sure we don't skew the results and wants me to wait another two weeks. And here is the kicker... You must eat gluten the whole time. SERIOUSLY??? Oh God, I'm going to die!

I go home, cry some more, eat my gluten (and sneak in a few non-gluten things here and there, hope it's OK?) and now I wait. I am so anxious. This all makes so much sense. I can't stop researching and can't saying "WHAT If" "WHAT IF"??? What if this is my answer? What if this women is my savor? What if I have been poising myself and killing off my organs for 25 years and no one found it? What if???

That is why I come to this board, turning to people with I'm sure similar stories. I have endured so much. I have a sweet little five year old that is denied a functional mother. I have a great business that is suffering. I have a relationship with my husband that could be so much better. I have so much rage and anger and pain and I want there just to be an answer. Please, there has to be, please let this be it!

Opinions from my test results? I know it sounds like I have it from everything I'm saying but what about the blood? How likely is it that I have this?

Thanks for listening!!! I will post my endoscopy results here in two weeks, I promise. From the girl that couldn't imagine giving up "carbs" to the girl that is dying to, literally.
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#2 GottaSki

 
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Posted 07 March 2014 - 01:49 AM

Welcome!

 

Yes, you likely have Celiac Disease and you are not alone.  Unfortunately, many of us went undiagnosed, misdiagnosed or had our symptoms dismissed for years.   Might not seem like it right now, but that positive tTG-IgA may have saved your life....or at least has given you the opportunity to greatly improve your health.

 

I know it's frustrating, but do continue to eat at least one slice of glutenous bread per day until the endoscopy.

 

This second GI sounds better than the first...do make sure he plans to take enough samples of the small intestine.  6-8 is recommended as damage can be spotty.  Also, if he hasn't had them run....request tTG-IgG and DGP-IgG before you remove gluten....having complete starting data to compare is helpful when it comes to follow up blood work.

 

Request written copies of both procedural and pathology reports for the endoscopy.  Another good idea is to have the person waiting for you to ask the doctor what he saw as you will likely be too loopy to do so....I have found the doctor sometimes imparts more helpful info right after the procedure than what is found in the report.

 

Take this time to prepare for removing all gluten once the endoscopy is complete.  This thread can be very helpful:

 

http://www.celiac.co...ewbie-info-101/

 

Again, welcome to the best club you never wanted to join :)


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 ravenwoodglass

 
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Posted 07 March 2014 - 03:38 AM

Welcome to the board. Your story is quite familiar to many of us. Keep on the gluten until your endo is done. After that is done you can go gluten free as long as no more celiac testing is needed. It isn't unusual for symptoms to become worse when you have been gluten free for even a short time and then add it back into your diet. No matter what the test results are your body is clearly telling you that you need to be gluten free. Hang in there and keep in mind it does take time to heal. Do be sure to read the Celiac 101 thread while you are waiting on the tests to be finished as what you need to do to be safe does go beyond just eating gluten free. It would also be a good idea to have your children screened periodically as Celiac is genetic and can be triggered at any point in a persons life.

I hope you are feeling better soon.


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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 frieze

 
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Posted 07 March 2014 - 04:45 AM

....and if you are looking to add to your family, you will need to wait awhile....maybe a year?


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#5 rcheltrvel

 
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Posted 07 March 2014 - 08:48 AM

Thanks and good to know I should wait a year if I want to get pregnant again but I think that ship has sailed. We tried for the last 3 years and I'm turning 42 in a few weeks, my husband is 45. 


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#6 rcheltrvel

 
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Posted 07 March 2014 - 08:49 AM

Welcome!

 

Yes, you likely have Celiac Disease and you are not alone.  Unfortunately, many of us went undiagnosed, misdiagnosed or had our symptoms dismissed for years.   Might not seem like it right now, but that positive tTG-IgA may have saved your life....or at least has given you the opportunity to greatly improve your health.

 

I know it's frustrating, but do continue to eat at least one slice of glutenous bread per day until the endoscopy.

 

This second GI sounds better than the first...do make sure he plans to take enough samples of the small intestine.  6-8 is recommended as damage can be spotty.  Also, if he hasn't had them run....request tTG-IgG and DGP-IgG before you remove gluten....having complete starting data to compare is helpful when it comes to follow up blood work.

 

Request written copies of both procedural and pathology reports for the endoscopy.  Another good idea is to have the person waiting for you to ask the doctor what he saw as you will likely be too loopy to do so....I have found the doctor sometimes imparts more helpful info right after the procedure than what is found in the report.

 

Take this time to prepare for removing all gluten once the endoscopy is complete.  This thread can be very helpful:

 

http://www.celiac.co...ewbie-info-101/

 

Again, welcome to the best club you never wanted to join :)

What in all of this makes you say I most likely have it? Are you basing this on the test results or the symptoms or both? Which more? Thanks!


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#7 rcheltrvel

 
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Posted 07 March 2014 - 09:27 AM

Can anyone tell me what my numbers mean? The one positive test, is that a test that is usually positive in Celiacs? Am I just slightly elevated?

 

Immunoglobulin A : 128 (normal, range 70-400)
Gliadin IGA Deamidated: 2.1 (normal, <20)
Transglutaminase IGA Autoabe: 20.8 (out of range <15.1)


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#8 rcheltrvel

 
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Posted 07 March 2014 - 09:32 AM

I spoke to this new doctor I really like's partner in his office. He was pretty old and old school, I could tell. He was going over my blood work again on the phone with me today and goes, this is very unlikely that you have Celiacs. I said why do you say that. He says, you have no history of chronic diarrhea, just a little bit here and there...LOL. 

 

From everything I have read, there could be no symptoms or so many others, not just the text book ones, right? Chronic constipation can be the alternative from everything I have read. Don't these doctors all learn the same thing in school? This kind of stuff makes you want to hate main stream doctors.


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#9 GottaSki

 
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Posted 07 March 2014 - 09:34 AM

What in all of this makes you say I most likely have it? Are you basing this on the test results or the symptoms or both? Which more? Thanks!

 

Symptoms.  Your story is very familiar here, plus I had many of the same symptoms as you.   Below I've edited your post to symptoms I had for decades that became increasingly severe as time went on.  I had a few more that you didn't have which is common...there are over 300 symptoms associated with Celiac.  The problem is they are not specific to Celiac.  I also anemia, low vitamin D plus other nutrients, weakly positive tTG-IgA (I had stronger positives on IgG panel) and elevated liver enzymes ... my nutrient levels and liver enzymes all corrected slowly and were perfect by one and half years gluten-free.

 

symptoms from the past 25 years (chronic sleep deprivation, chronic fatigue, no memory, exercise intolerance, massive brain fog getting worse, chills that come and go, stomach bloating, chronic constipation, random bouts of IBS, unexplained weigh gain, eye swelling upon waking like an allergic reaction, pin and needles in feet and hands, arthritis in neck, chronic neck pain after injury, burning muscles and eyes after exertion, muscle stiffness that is worse on awaking, chronic headaches plus migraines (sugar induced I think), weird chemical sensitives that come and go over the years, late puberty, miscarriage and infertility for no reason, loss of tooth enamel for no reason all of the sudden, concentration issues, ringing in ears, eye twitching, eye sensitivity to light and night driving, hoarseness, muscle cramps, etc... And the list goes on), she decided she wanted to get to the bottom of "this Fibromylagia", and she actually used quotes with her fingers when she said it.

 

Fibromyalgia is a label given to a group of symptoms that can all be caused from nutrient malbsorption caused in Celiac Disease.  In my opinion, everyone diagnosed with an autoimmune disorder, especially "fibromyalgia" or CFS should be given a complete celiac antibody panel.

 

Call it "gut" instinct...I believe there is a very high likelihood that your endoscopy will find damage in your small intestine or your IgG antibody blood tests will provide more information.

 

If your endoscopy reveals nothing....you should still remove ALL sources of gluten to monitor symptom improvement.  That you already experienced a strong reaction to the five day trial is enough reason to remove gluten...even without your positive tTG, elevated liver enzymes and low vitamin D factored in to the equation.

 

Hang in there.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#10 rcheltrvel

 
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Posted 07 March 2014 - 09:48 AM

Symptoms.  Your story is very familiar here, plus I had many of the same symptoms as you.   Below I've edited your post to symptoms I had for decades that became increasingly severe as time went on.  I had a few more that you didn't have which is common...there are over 300 symptoms associated with Celiac.  The problem is they are not specific to Celiac.  I also anemia, low vitamin D plus other nutrients, weakly positive tTG-IgA (I had stronger positives on IgG panel) and elevated liver enzymes ... my nutrient levels and liver enzymes all corrected slowly and were perfect by one and half years gluten-free.

 

 

Fibromyalgia is a label given to a group of symptoms that can all be caused from nutrient malbsorption caused in Celiac Disease.  In my opinion, everyone diagnosed with an autoimmune disorder, especially "fibromyalgia" or CFS should be given a complete celiac antibody panel.

 

Call it "gut" instinct...I believe there is a very high likelihood that your endoscopy will find damage in your small intestine or your IgG antibody blood tests will provide more information.

 

If your endoscopy reveals nothing....you should still remove ALL sources of gluten to monitor symptom improvement.  That you already experienced a strong reaction to the five day trial is enough reason to remove gluten...even without your positive tTG, elevated liver enzymes and low vitamin D factored in to the equation.

 

Hang in there.

 
Thank you Lisa. It's nice to hear someone that went through similar things. Maybe this at least will help me through the next two weeks.
 
I feel the same about Fibromyalgia and testing. In fact, if 1 out of 100 people have Celiacs and it causes so many bad problems and it's curable, why not just test kids when they are born or young automatically? I so feel this with every bit of me but I have to stay a sceptic because I have been wrong before and I don't want to get ahead of myself. When you were really sick, did you have any issues with exercise? That has been one of my biggest issues with all of this. I can't lose weight no matter what Weight Watchers plan I am on, etc... The only way I can even lose a pound is cutting out the carbs, never knowing that had anything to do with gluten). Exercise can also help only a little for me but the minute I exert myself even for 20 minutes of light walking on a tredmill, I feel ill all over with buring eyes and can't function for a week. It's like my whole immunie system is being attacked or something. It's been something so hard to explain to doctors and people, no one understands when you say "I get litterly sick from exercise". I personally love to work out, but at this point it is a love/hate relationship. I want to do what the guy or girl next to me is doing but if I did that, I would be sick for two weeks. Like I have the flu, minus the fever. I know everyone is different but I have been looking for years for someone that has the same reaction to exercise.
 
Also, the "tTG-IgG test", is that different from the "Transglutaminase IGA Autoabe" test in my results?
 
Thanks, Rachel

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#11 nvsmom

 
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Posted 07 March 2014 - 09:54 AM

Can anyone tell me what my numbers mean? The one positive test, is that a test that is usually positive in Celiacs? Am I just slightly elevated?

 

Immunoglobulin A : 128 (normal, range 70-400)
Gliadin IGA Deamidated: 2.1 (normal, <20)
Transglutaminase IGA Autoabe: 20.8 (out of range <15.1)

 

Immunoglobulin A (IgA) is a control test to make sure you make enough IgA for accurate IgA celiac based testing. About 5% of celiacs are deficient in IgA so thier tests are often false negatives. Your IgA looks just fine so your other tests should not be affected.

 

The gliadin IgA deaminated test is the DGP IgA, which is a newer and good celiac test. Yours is negative so you make not have celiac disease, but that test's sensitivity is only 82-96% which means it will miss 4-18% of all celiacs. See page 12 of this report for my source: http://www.worldgast..._long_FINAL.pdf

 

Your tTG IgA is positive. That test is 91-99% specific to celiac disease, which means that 1-9% of positive test results could be caused by something other than celiac disease. Usually when a patient falls into that 1-9% group, their results are a weak positive so there is a slim chance that you don't have celiac disease, but a 91-99% chance that you DO have celiac disease.  False negative tTG IgA tests can be caused by thyroiditis, crohn's, colitis, chronic liver disease, diabetes, or a serious infection. If it's not celiac disease (which it most likely is) then your doctor should be looking into these other causes.

 

It is not unusual for a celiac to have only some positive tests. I would say that at least haf fall into that category. And then there are many who have negative blood tests but a positive biopsy and vice cersa -  we all have celiac disease though.

 

Doctors only look at the most common symptoms. There are over 300 symptoms of celiac disease! I too did not fit the usual symptom list: I was a tall kid, athletic, and suffered from chronic C since babyhood. They thought it so unlikely that celiac disease was a problem that they never mentioned it or tested for it... Technically, it's unlikely that anyone would have celiac disease as less than 1% of people have it, but someone's gotta get it.  LOL

 

Also, hypothyroidism is common among celiacs and can cause C as well.  You might want to request a TSH test (should be near a 1), free T4 and freeT3 (should be in the upper 50-75% range of the lab's normal reference range, and TPO Ab.


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#12 rcheltrvel

 
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Posted 07 March 2014 - 09:58 AM

Immunoglobulin A (IgA) is a control test to make sure you make enough IgA for accurate IgA celiac based testing. About 5% of celiacs are deficient in IgA so thier tests are often false negatives. Your IgA looks just fine so your other tests should not be affected.

 

The gliadin IgA deaminated test is the DGP IgA, which is a newer and good celiac test. Yours is negative so you make not have celiac disease, but that test's sensitivity is only 82-96% which means it will miss 4-18% of all celiacs. See page 12 of this report for my source: http://www.worldgast..._long_FINAL.pdf

 

Your tTG IgA is positive. That test is 91-99% specific to celiac disease, which means that 1-9% of positive test results could be caused by something other than celiac disease. Usually when a patient falls into that 1-9% group, their results are a weak positive so there is a slim chance that you don't have celiac disease, but a 91-99% chance that you DO have celiac disease.  False negative tTG IgA tests can be caused by thyroiditis, crohn's, colitis, chronic liver disease, diabetes, or a serious infection. If it's not celiac disease (which it most likely is) then your doctor should be looking into these other causes.

 

It is not unusual for a celiac to have only some positive tests. I would say that at least haf fall into that category. And then there are many who have negative blood tests but a positive biopsy and vice cersa -  we all have celiac disease though.

 

Doctors only look at the most common symptoms. There are over 300 symptoms of celiac disease! I too did not fit the usual symptom list: I was a tall kid, athletic, and suffered from chronic C since babyhood. They thought it so unlikely that celiac disease was a problem that they never mentioned it or tested for it... Technically, it's unlikely that anyone would have celiac disease as less than 1% of people have it, but someone's gotta get it.  LOL

 

Also, hypothyroidism is common among celiacs and can cause C as well.  You might want to request a TSH test (should be near a 1), free T4 and freeT3 (should be in the upper 50-75% range of the lab's normal reference range, and TPO Ab.

 

Thank you Nichole for the blood test lesson, I really appreciate it. You read so many things, you are just not sure.


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#13 anand

 
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Posted 07 March 2014 - 10:19 AM

Pl. trust ur nurse practitioner more than anyone else.... After all, she is the one who diagnosed u with celiac ... Symptoms + elevated blood test is enough esp if u respond to a gluten free diet...esp since u feel bloating on reintroduction of gluten.
And u are absolutely right, all children before the introduction of baby food should be checked for the celiac gene. It costs just $149...without the gene one can't have Celiac. This will happen in the future , but I don't know how far away...
u need to get tested for all micronutrients and vitamins and bring them to a normal level ... Best wishes....
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#14 frieze

 
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Posted 07 March 2014 - 11:39 AM

not having DQ8 or 2 is NOT an absolute that you can't have/develop celiac disease.


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#15 GottaSki

 
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Posted 07 March 2014 - 02:28 PM

 

 
Thank you Lisa. It's nice to hear someone that went through similar things. Maybe this at least will help me through the next two weeks.
 
I feel the same about Fibromyalgia and testing. In fact, if 1 out of 100 people have Celiacs and it causes so many bad problems and it's curable, why not just test kids when they are born or young automatically? I so feel this with every bit of me but I have to stay a sceptic because I have been wrong before and I don't want to get ahead of myself. When you were really sick, did you have any issues with exercise? That has been one of my biggest issues with all of this. I can't lose weight no matter what Weight Watchers plan I am on, etc... The only way I can even lose a pound is cutting out the carbs, never knowing that had anything to do with gluten). Exercise can also help only a little for me but the minute I exert myself even for 20 minutes of light walking on a tredmill, I feel ill all over with buring eyes and can't function for a week. It's like my whole immunie system is being attacked or something. It's been something so hard to explain to doctors and people, no one understands when you say "I get litterly sick from exercise". I personally love to work out, but at this point it is a love/hate relationship. I want to do what the guy or girl next to me is doing but if I did that, I would be sick for two weeks. Like I have the flu, minus the fever. I know everyone is different but I have been looking for years for someone that has the same reaction to exercise.
 
Also, the "tTG-IgG test", is that different from the "Transglutaminase IGA Autoabe" test in my results?
 
Thanks, Rachel

 

 

Hi Rachel!

 

My biggest complaint to every flipping doctor for over 25 years was that I was heavier than I should be for what I ate and how active I was.  As a child I was always chubby even though I ate fairly well and walked to and from school every day - one mile up an 800' elevation change.  In my teens, like many teen girls I did not eat enough and lived off of diet coke and salad -- not a good idea for anyone, but I was healthier than any other point in my life and was a size 5/6 which felt right for my small bone structure.  In my 20s and 30s I was working full time, was a student at night followed by raising two small children while running my own business...always eating reasonably and exercising (running, biking, walking, hiking, kayaking, skiing) yet continually gaining weight ... 10-20 pounds during my 20s, 20-30 pounds in my 30s and then added another 30 in my early 40s.  Each and every doctor dismissed my complaint with the old "calories in, calories out" statement  :angry:  -- while true for a normal body, this is not true for a body in crisis.  I dropped 40 pounds my first year gluten-free -- eating more than I had at any other time in my life.  I haven't lost anymore and I do need to...but I am at a much healthier weight than the worst time right before diagnosis.

 

I have a long history with exercise allergy/intolerance.  As a child I always turned bright red during any exertion, but felt fine.  In my 20s I lost the ability to run due to joint/ligament issues (these improved gluten-free...on good days I can jog and my knees haven't "popped out" sideways since I was diagnosed...I've even considered not using patella straps for skiing, but am not brave enough yet). 

 

In my late 20s/early 30s I started having issues while exercising in the heat of the day, and started having breathing problems and turning red not only in my face, but my neck, chest and then trunk were turning bright red.  Eventually I developed an abdominal bloat with exercise - which was worse if I eat anything before exercise (this did not go away with the removal of gluten....turns out it was related to my body's inability to regulate histamine (can be a side effect of celiac damage in the small intestine or I might have had a histamine/mast cell issue all along).  The breathing issues have continued if I am in direct sunlight or exercise in weather over 65 and sometimes no matter what precautions I take...so it leaves me walking and riding in the very early morning hours only.  I have to carry an inhaler, benedryl and epi pen at all times.

 

Here is a complete celiac antibody panel:

 

Total Serum IgA

tTG-IgA and tTG-IgG

EMA-IgA

DGP-IgA and DGP-IgG

 

you have had the tests in blue and have not had the tests in red. :)

 

PS...I completely understand the desire to exercise, but it making you sick.  I have a sister that HATES to exercise that wishes she could trade places with me to have a reason to be lazy...while it leaves me sick and tire with HUGE desire to be outdoors and active all day long.  If I could regain my ability to ski all day, I think I would run away from home to be full time Ski Patrol and still may one day!


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)






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