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12 replies to this topic

#1 LolaBean

 
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Posted 20 March 2014 - 06:05 PM

Hi there.. New to this whole thing! I believe my symptoms to be classic Celiac so asked for blood test back in December from my old doctor. The TTg Iga level was 6 which would be a weak positive . Everything else was normal apparently but I didn't ask for the results yet. The doctor was a fill in that gave me the results and all she said was that it was high but not Celiac and that was that because I didn't know better at the time. I
I've recently changed doctors because of distance and impending retirement and my new doctor looked over my results and was concerned especially with worsening symptoms. So I've had another celiac screen done and other tests including breath test etc. My doctor told me she needs to make sure there is nothing else causing the elevated TTg Iga. Is this normal? Can the levels get worse? Any advise or feed back would be much appreciated.
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#2 GottaSki

 
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Posted 20 March 2014 - 07:17 PM

Welcome Lola!

 

First...higher levels of antibodies found in the blood are not a good indication of severity of symptoms or stages of celiac disease...so no, the levels can't get worse, but your health can and levels may increase with time.

 

Second...you had a positive celiac antibody test along with symptoms -- that certainly deserves more investigation.

 

Do you know what tests were run?  Make sure you get written or electronic copies of the results for all tests.  This is a good practice with all medical concerns...not just celiac testing.

 

Hang in there -- a doctor that ordered a breath test seems to be looking at other possible causes which is a good thing.

 

Let us know if you have more questions :)


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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 LolaBean

 
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Posted 21 March 2014 - 05:53 AM

Thanks so much for the reply Lisa:)
My new doctor is very young and seems to be very up to date on celiac diagnosis which is great! I believe I've had symptoms since I was a child.. Short stature.. Always vomiting.. Skin issues.. Etc! I also remember horrible abdominal pains into my teens so it's nice to have a doctor that wants to investigate. I have a weird symptom that I can't seem to find much info about.. I'm very dizzy not all the time but in the morning especially and after I eat. I figured it was just low blood sugar and I just needed food but that seems to make it worse! Wondering if anyone else has heard or this. I've had all associated blood work done to check for things that might cause this to a vail. Thyroid.. CBC etc.
I will get my results ASAP.. My doctor mentioned that she wants to make sure it's not a false positive and that some people don't make enough antibodies or it might be in the early stages. She is also happy to refer me to a GI but also wants an ultra sound done before moving forward. Does this all sound normal?
I should be getting my screening results this week so I'll post them to get some opinions as we'll.
Thanks again
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#4 cmc811

 
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Posted 21 March 2014 - 06:18 AM

Sounds like you have a great doctor that wants to finally get you feeling better! That all sounds pretty normal to me. I had quite a few tests done as well to rule out potential causes and yes, the dizziness is one of my symptoms. I don't know that it's my worst symptom but it is the one that in interfering the most with my work, which is becoming problematic. I've only been diagnosed for 2 weeks so I'm hoping as more time goes by that will start to fade away.

 

Glad you're be listened to! Sounds like a good doctor so don't be afraid to ask questions. If you don't understand the ultrasound, ask what they're looking for.


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Misty

 

Myself: tTg-IgA was 7 (>4 positive), normal total IgA, Unspecified anemia, low magnesium, really low Vitamin D, normal thyroid with no antibodies, slightly positive ANA (1:40 speckled) but confirmation panel all negative, so no explanation. No other celiac tests ordered, Endoscopy appeared normal, Biopsy showed increased lymphocytes - Marsh I. She called biopsy "equivocal" but diagnosed Celiac anyway based on high specificity of tTg test.

Son (born in 2008): Alopecia Areata, Chronic constipation, vague abdominal pain, waves of nausea that have been occurring for months with no other cause identified,always tired even though he sleeps 10+ hours per night. Behavior change. Jekyll and Hyde type tantrums that are triggered by the silliest things. Totally uncharacteristic for him. Mild asthma, ezcema, wierd skin rashes that don't appear to be DH. Slow weight gain, normal height. His weight for age percentile is dropping but slowly so doesn't concern pediatrician. His BMI, however, has dropped from 33rd percentile to the 5th in 2 years. Low red blood cell count, low-normal hemoglobin/hematocrit - not being called anemia. His number looks just like mine used to and mine have continued to get worse. Normal total Iga, Negative tTg. Result was <1 with >4 being positive. Negative EMA. TSH 2.91 at 22 months and now at 5.75 yrs is 4.7 but still being called normal.

Son (born in 2011): Enamel issues on baby teeth, Keratosis pilaris, Toenail fungus since birth on both small toes. Normal total IgA, negative tTg (<1).


#5 GottaSki

 
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Posted 21 March 2014 - 06:36 AM

Thanks so much for the reply Lisa:)
My new doctor is very young and seems to be very up to date on celiac diagnosis which is great! I believe I've had symptoms since I was a child.. Short stature.. Always vomiting.. Skin issues.. Etc! I also remember horrible abdominal pains into my teens so it's nice to have a doctor that wants to investigate. I have a weird symptom that I can't seem to find much info about.. I'm very dizzy not all the time but in the morning especially and after I eat. I figured it was just low blood sugar and I just needed food but that seems to make it worse! Wondering if anyone else has heard or this. I've had all associated blood work done to check for things that might cause this to a vail. Thyroid.. CBC etc.
I will get my results ASAP.. My doctor mentioned that she wants to make sure it's not a false positive and that some people don't make enough antibodies or it might be in the early stages. She is also happy to refer me to a GI but also wants an ultra sound done before moving forward. Does this all sound normal?
I should be getting my screening results this week so I'll post them to get some opinions as we'll.
Thanks again

 

What sounds normal is all the symptoms of celiac being dismissed.  Just teasing...kind of.

 

Seriously, your doctor sounds wonderful and more tests is a pain...but a doctor willing to order them is doing their job and it is wonderful to see.

 

While false negatives are frequent with celiac - false positives are very rare.

 

We have a saying that we use often -- I truly did lmao (in my head) when my celiac doc moved to UCLA and I met his replacement at a Gluten Free Fair put on by UCSD and she said in our very first conversation --

 

positive is positive

 

I don't know the numbers of false pregnancy tests....but they may beat false celiac antibody tests.

 

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 :)


#6 HavaneseMom

 
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Posted 21 March 2014 - 09:40 AM

Hi LolaBean,
I'm glad to hear your doctor is looking in to your symptoms further. My doctor had ordered a ultrasound of my gallbladder and pancreas at one point due to my symptoms, but nothing showed up and after a quite a bit of time, I finally went to a GI doctor and found out it was Celiac. I waited what seemed like forever to get a referral to a GI doctor, and come to find out, my insurance doesn't actually require a referral for specialist! Try to see a GI doctor ASAP, if you feel like your doctor is dragging their feet on this. The longer you wait, it often takes longer to heal.
The dizziness you mentioned seems to be a pretty common celiac symptom. Mine started out as dizziness when getting out of bed in the morning and escalated to the point that I could even ride on the highway because the motion and speed would make my head spin like crazy. If you search this site or do a Internet search for celiac and dizziness, vertigo or gluten ataxia, I think you will be surprised at how common this symptom is for Celiacs.
Good luck and I hope you feel better soon.
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Grateful to be correctly diagnosed at 40.
Likely misdiagnosed since childhood.
Blood test and Biopsies positive for Celiac Disease.
Gluten Free Since 10/9/13.

Be kind whenever possible. It is always possible. ~ Dalai Lama

#7 LolaBean

 
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Posted 22 March 2014 - 02:33 AM

Any idea if H. Pylori can cause TTg Iga to come back positive?
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#8 GottaSki

 
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Posted 22 March 2014 - 07:52 AM

A positive tTG-IgA should trigger doctors to run the complete antibody panel.  You need to find out what was run:

 

Total Serum IgA

tTG-IgA

tTG-IgG

EMA-IgA

DGP-IgA

DGP-IgG

 

AGA - both IgA and IgG are also tests for antibodies to Gliadin - the DGP also tests antibodies to a smaller part of the gliadin protein called a peptide.

 

Since your doctor is being thorough and doesn't have a problem ordering tests, he should run them all before assuming your positive tTG is not triggered by Celiac Disease.

 

I know someone else that knows the other causes of elevated tTG offhand - I'll try to get her attention to your thread.

 

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 :)


#9 LolaBean

 
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Posted 22 March 2014 - 09:36 AM

Thanks everyone! I was reading about how often people with celiac end up having H.pylori at the time of Celiac diagnosis or develop it! All very interesting.. I was tested for it at the same time as my second celiac screen and got a call back to follow up with my doctor re test results.. So they found something.. Not a big surprise! I'll be sure to get a copy of all my results to share and compare. Thanks again
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#10 nvsmom

 
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Posted 22 March 2014 - 12:11 PM

My new doctor is very young and seems to be very up to date on celiac diagnosis which is great! I believe I've had symptoms since I was a child.. Short stature.. Always vomiting.. Skin issues.. Etc! I also remember horrible abdominal pains into my teens so it's nice to have a doctor that wants to investigate. I have a weird symptom that I can't seem to find much info about.. I'm very dizzy not all the time but in the morning especially and after I eat. I figured it was just low blood sugar and I just needed food but that seems to make it worse! Wondering if anyone else has heard or this. I've had all associated blood work done to check for things that might cause this to a vail. Thyroid.. CBC etc.
I will get my results ASAP.. My doctor mentioned that she wants to make sure it's not a false positive and that some people don't make enough antibodies or it might be in the early stages. She is also happy to refer me to a GI but also wants an ultra sound done before moving forward. Does this all sound normal?
 

 

Welcome to the board, LolaBean.

 

A weakly positive tTG IgA can be attributed to other causes in a minority of cases. According to the World Gastroenterology Celiac Practice Guidelines for 2012 (page 12), the specifity og the ttG IgA is 91-99%, so that means that 1-9% of all positive tests are caused by something other than celiac disease.  This site puts the specificity at about 95%.  It means that chances are slim that your positive is not caused by celiac disease - especially when accompanied by so many symptoms.

 

The other, more rare, causes of a positive tTG IgA are diabetes, thyroiditis, crohn's, colitis, chronic liver disease, and severe infections.  Most of those are linked to celiac disease (autoimmune diseases) so it's a good idea to suspect celiac disease with a positive tTG IgA even if you don't have symptoms... which you do.

 

That all being said, celiac disease, especially if it has been undiagnosed for many years, can cause other problems from years of living with inflammation. It's a good idea to re-address all of your symptoms after you have been gluten-free for 6 months or so.

 

If you are worried about blood sugar going low, you might want to get that checked. Blood sugar that dips too low is often caused when the body is releasing too much insulin, which often leads to diabetes.... I've learned this the hard way recently. LOL I would often get light headed, shake, and feel faint if I wasn't eating every couple of hours, and that's NOT normal even if I (you) try to brush it off as nothing. I am only 40, with a BMI that barely touches the overweight range, and I have early (pre)diabetes. A fating blood glucose, and oral glucose tolerance test can give you info about that.

 

Light headedness can also be caused by poor adrenal function (Addison's or a less major adrenal insufficiency). I have a problem with postural hypotension, meaning my blood pressure drops when I stand up or get moving. It could be something to look at too.

 

Also, hypothyroidism (thyroiditis) will often slow your metabolism enough that you have a slower pulse and could affect blood pressure. Celiacs often have low bp too. Hypothyroidism can also cause stomach issues, skin problems, fatigue and pain. Anyway, thyroid testing should include the TSH (should be near a 1 regardless of lab range), free T3 and free T4 (should be in the 50-75% range of your lab's normal reference range), and TPO Ab.

 

Your doctor mentioned checking antibody levels... That's smart. That would be the total serum IgA that Lisa mentioned. About 5% of celiacs are deficient in IgA, higher than the regular population, and it makes it almost impossible to get accurate celiac testing using IgA based testing. I've only seen one person who was deficient in IgA have a positive tTG IgA blood test, and it was a weak positive.  Just remember that a positive is usually a positive. Chances are you have celiac disease.  :(  Just don't go gluten-free until you are done testing!  

 

Good luck. I hope you get more answers.


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#11 LolaBean

 
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Posted 24 March 2014 - 06:48 PM

Thanks nvsmom.. I'll be getting my results from my second screen tomorrow along with my results for H.pylori and few other things. I'll grab my results from Dec as comparison aswell. Looking forward to everyone's feed back once I post my screen results.
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#12 LolaBean

 
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Posted 25 March 2014 - 10:17 AM

Ok so screen came back negative..
Ttg Iga 12.6 (0.0-20.0)
Immunoglobulin A H 6.07 (0.60-4.20)
This 1 is high.
Doctor is sending me for more blood work because she doesn't know why I'm having an immune response however she mentioned this could be just the way I am. Any thoughts?
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#13 nvsmom

 
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Posted 25 March 2014 - 07:02 PM

I do not know much about elevated IgA. I know it is related to infection (in the mucosal linings), rheumatoid arthritis, liver disease, and SLE; it can also be elevated for no obvious reason. That's good that she is running more tests.

She only ran one celiac disease test, and one is not usually enough. False negatives are not rare. There is a 5-25% chance of a false negative with the tTG IgA test as seen on page 12 of this report: http://www.worldgast..._long_FINAL.pdf. If possible, get the rest of the celac panel run, or even the biopsy. If she won't do more tests you have a couple of options: find a new doctor or assume it is non- celiac gluten intolerance or celiac disease and go gluten-free anyways.

Best wishes.
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