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Member Since 12 Jun 2012
Offline Last Active Yesterday, 04:16 PM

#911695 New- Just Got A Diagnosis

Posted by on 07 April 2014 - 03:57 PM

Welcome to the board.  :)


Don't forget to get the rest of the family tested as celiac disease tends to run in families. If everyone tests negative, and they continue to eat gluten, they should be retested every couple of years or as soon as symptoms appear.


Good luck with the endoscopy.  Make sure they take at least 6 biopsy samples.

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#911419 New To Everything, Need Insight

Posted by on 04 April 2014 - 03:08 PM

Only my Mother is being supportive of me, everyone else is denying it and saying "everyone" is claiming to be a celiac and it's probably not what it is. . . . I don't know what else it would be then honestly! 



Celiac is found in about 1% of the population but non-celiac gluten sensitivity (NCGS) is in 5-20% of the population (with 6-10% the most common stat). Really, 1 out of every 10 has an issue with gluten, so I think MORE people should be discovering that gluten is a problem - I think it's under diagnosed.


I would guess that 75% of us were told that it's all in our head, or it's stress related... It should almost be a celiac sign - "You've been told it's all in your head".  LOL ;)


Keep at it and you'll get your answer. A food and symptom journal will help you keep the "proof" straight. Many celiacs find it helpful to keep one while recovering.


Hang in there.

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#911418 I'm New And So Frustrated

Posted by on 04 April 2014 - 03:02 PM

The tTG IgA misses 5-25% of all celiacs when it is a lab run test. If positive, it is a 95% certainty that it was caused by celiac disease (the specificity) - the problem is that the sensitivity is 75-95%. You could still easily have celiac disease. Easily.


My Biocard test had such a faint line that I checked it and dismissed it. Then I came back and rechecked it after 10-15 minutes, which exceeded the normal time limit. My positive line was soooo faint that I seriously doubted it. I googled it a bunch before making a doctor's appointment. I had a lab drawn tTG IgA about 10 days later and I exceeded the normal limit by at least 10 times - that's where they stopped counting.


I would still get the doctor to test you. Don't even mention the Biocard test to him. Get the tTG IgA, tTG IgG, DGP IgA, DGP IgG, EMA IgA and even the older AGA IgA and AGA IgG if possible.  The more tests the better as you'll be less likely to get a false negative.  There are others who only had a positive biopsy so pursuing that, even if all blood tests are negative, might be an idea. Keep eating gluten until all testing is done - if you can stand it.


If everything comes back negative, then that leaves the possibility of very early, too early to detect, celiac disease or non-celiac gluten sensitivity (NCGS). NCGS has the same symptoms of celiac disease but does not have the villi atrophy. Bloating, headaches, D, ataxia, arthralgias and nutrient deficiencies can all be found in those with NCGS. It's just as nasty as celiac disease.  I personally think it is just another type of gluten sensitivity like celiac disease is. Some of us get D, some get headaches, some have it affect fertility, some get villi blunting.... but that is just my own theory. 


Those with NCGS need to be 100% gluten-free, just like a celiac, or the symptoms will come rushing back.  :(


Some doctors think the AGA tests will show NCGS but they aren't the most reliable tests out there. A positive response to the gluten-free diet is the main diagnostic tool. 


Hang in there. Very few of us have a black and white diagnosis. Doubt is all over. This pre-diagnosis board is supper busy for a reason - those celiac disease tests are not fool proof.... even if doctors imply that they are.

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#910389 Ema

Posted by on 26 March 2014 - 09:16 AM

The EMA IgA is rarely positive if the tTG IgA is not.  The EMA tends to become positive after the tTG IgA has damage to the villi. Then the body makes EMA and wipes out the top layer of damaged villi in a big autoimmune over reaction.... That's a bit simplified but basically how it works. That's why many labs (like mine) only run the EMA IgA AFTER a positive tTG IgA has been found. In my city to test for celiac disease, you only get a tTG IgA (and serum IgA) ordered and then if you fail that they will order the EMA.  No other options were available to me.

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#910026 How To Discuss It With Doctor

Posted by on 23 March 2014 - 09:59 PM

My kids tested negative too although gluten is a problem for most of them. I am guessing they have celiac disease but the test did not show it, so they are now gluten-free anyways... Just in case.
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#910022 Frustrated

Posted by on 23 March 2014 - 09:37 PM

I had a response typed out and then the iPad died... Darn. Lol

Anyway, it looks like you had the tTG IgA and DGP IgA run. Both good tests. Did you have the serum IgA test run? If you are low in IgA, those tests will be invalid.

I am not confident that your 3 week gluten challenge was enough. Most doctors not want you to complete a 2-3 month gluten challenge so the tests will be accurate... You may have needed longer for accurate testing, so you could have celiac disease.

Either way, NCGI and celiac disease both have the same treatment - the gluten-free diet. It sounds like you have one or the other if you felt better gluten-free.

As for your family, could they have the celiac panel run instead of the genetic tests? The dq2 and dq8 genes just mean one has a greater chance of having or developing celiac disease than other people BUT those genes are not needed to develop celiac disease; we have a few board members who had negative genetic tests yet still tested positive for the disease.

If your kids test negative but still eat gluten, they should be retested every few years. You might want to consider the gluten-free diet for them too. They could also have NCGI, which feels just as horrible as celiac disease - as you already know - so they may be healthier if they go gluten-free. Just make sure you give the diet a few months as some symptoms take a long time to improve.

Best wishes.
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#910015 Numbers Are Fun!

Posted by on 23 March 2014 - 08:53 PM

YES!! I did it! After half of a wasted day, I did it! It was a bit disappointing that there were no flashing lights or applause though. LOL
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#909968 Numbers Are Fun!

Posted by on 23 March 2014 - 12:35 PM

Curse you, Lisa! I just wasted two hours of my weekend on that game.... Evil! :ph34r:


I can only get up to a 512 tile. I had a 256 and a few other high tiles at the same time once, but then it all fell apart.




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#909864 Sent For 2Nd Test

Posted by on 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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#909197 What Could Cause Elevated Igg And Iga In Toddler Other Then Celiac?

Posted by on 17 March 2014 - 11:58 AM

The tTG IgA and IgG are pretty specific for celiac disease. The tTG IgA has a specificity of 91-99% as seen here: http://www.worldgast..._long_FINAL.pdf The The tTG IgG has a specificity of about 95% as seen here: http://www.jfponline...ws]=172034 This site also shows a higher specificity for the tTG IgA - This means that 5% of positives (or less) are caused by something other than celiac disease.


When false positives do occur, it is a weak false positive. After almost 2 years of reading, reasearch, and posting on here more than my housework shoul allow, and I have never seen high poisitives caused by anything other than celiac disease.  On the other hand, I have seen a few WEAK positives caused by thyroiditis, diabetes (T1), crohn's, colitis,chronic liver disease, and infections. I have hypothyroidism and I am guessing that is what causes my tTG IgA to remain slightly/weakly elevated (at 20 point something when the upper normal limit is 20 - when first diagnosed it was over 200).


I see she has a pretty high TSH which would indicate hypothyroidism/thyroiditis at some labs. That could elevate her tTG IgA minimally. I'm afraid that I don't know is it would affect the tTG iGG - I REALLY doubt it would push it over 100 in any case. It's celiac disease.  ;(


Are you pursuing her high TSH too? If so, a recheck of the TSH would be good (near a 1 is normal), free T4 and free T3 (should be in the 50-75% range of your lab's normal reference range), and TPO Ab are good to ask for.


Best wishes.

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#908891 Results

Posted by on 13 March 2014 - 08:15 PM

My kids were negative on their celiac disease tests too so now that they are gluten-free and feeling better, the improvement is viewed as a "coincidence" by their doctor. NCGI is very real and has basically all the same symptoms as celiac disease except the villi atrophy and the dh rash. Nasty! I hope you feel better soon on the gluten-free diet. :)

And ditto Paul, a food and symptom journal is really helpful to see patterns when most symptom changes are too slow to notice on a day by day basis.
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#908890 Help With Test Results

Posted by on 13 March 2014 - 08:08 PM

The AGA IgA and AGA IgG can indicate non celiac gluten sensitivity (NCGS) but the tests have a specificity of 80-95% for celiac disease, so chances are good that the positive results are caused by celiac disease and not NCGS. This report is where I found the info (page 12): http://www.worldgast..._long_FINAL.pdf

I agree that if you want to know whether it is celiac disease or NCGS, then the endoscopy might be a good idea. Just be aware that doctors can miss the damaged spots - false negatives are possible although a minority.

Either result will result in the same treatment - 100% gluten-free diet for life. Hope you feel well soon.
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#908887 Confusing Results

Posted by on 13 March 2014 - 07:40 PM

Good luck.

Don't forget to get your kids tested too. celiac disease runs in families so if you have it, and they are still eating gluten, they should be tested every opulent of years.
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#908436 Stopped Gluten, Still Issues, Blurry Vision, Overnight Issues...

Posted by on 09 March 2014 - 05:14 PM

Welcome to the board.


I wonder about being diabetic. I know my sugars can go very high but that was from gluten. Does anyone know can you test diabetes with just a regular blood sugar meter? I don't have insurance right now so I'm doing this all on my own.



Gluten will not affect your blood sugar much. It's technically a protein, and proteins don't spike sugar much. Carbohydrates are the things that affect your blood sugar, and any flour will do it whether it's gluten filled like wheat, and rye, or gluten-free like corn starch, and tapioca starch.


I do agree though that if you think diabetes is a possibility, then you should see your doctor. You've listed a lot of symptoms so it might be good to check it out.  If you do have access to a glucose metre, checking your fasting blood glucose can often tell you if you are having problems can be helpful. If your FBG is between 100 to 125 you are headed for trouble, and if it is above 126, then you've already arrived at trouble. Fast for 12 hours before testing. http://diabetes.nidd...pubs/diagnosis/


Some of your symptoms could be due to a thyroid problem like Graves. Google the symptoms and see if it fits. TSH, free T4 and free T3, as well as TPO Ab would be good tests to ask for.


LOL And you don't need "someone who knows everything", you're already married.  LOL ;)

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#908434 Cold Snowy Winter Comin'............ Git Ready

Posted by on 09 March 2014 - 04:58 PM

Oh yeah! There is grass! I see grass! Ugly frozen brown grass, but still... LOL

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