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jamie101

Blood Test Results Questions?

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I got my results back & have a follow-up scheduled with my allergist two weeks from now but I wanted to get to the root of my issue ASAP, which is why I'm posting here.

He ran a series of bloodwork on me and did include the Celiac panel, however, it only includes three specific categories, which baffles me as there are typically several different ones I've heard of?

These are the results:

Immunoglobulin A, Qn, Serum 148 mg/dL 91-414 N

t-Transglutaminase (tTG) IgA <2 0-3 N

Endomysial Antibody IgA Negative Negative N

My results appear to be negative, although my IgA is very close to being positive and I know this is the most important category in being diagnosed as Celiac.

An issue I do have is that prior to this blood test I was already started on my gluten free diet per my allergists request... I had no idea I was supposed to continue consuming gluten until all testing was complete. I had my blood exam two days after my appointment, however I did start eating less gluten prior to that.

What do you think?

I feel 1000x better since going gluten-free - seriously, all of my symptoms even ones I did recognize in relation to my potential dx of celiac, have reduced considerably and gone away.

Has anyone had similar results & have Celiac?

Did my dr order the appropriate screening? I feel like some stuff was left out.

Thanks.

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There are others here who are much better at figuring out the blood work that I but this is the CURRENT FULL celiac blood panel.

 

 

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA 
 
The DGP test was added recently to the full panel.
 
 
Also can be termed this way:
 
Endomysial Antibody IgA
Tissue Transglutaminase IgA 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG
 
So you did not get the FULL panel. Also, If I'm not mistaken, you could be IGA deficient which is covered in the Total Serum IGA which was not done on you. Some people are IGA deficient & thus test negative on the blood work b/c of that deficiency. This could be what happened to you but b/c they didn't do it then they don't know you could be deficient. 
 
Also, the gluten light or not eating a full gluten diet could have resulted in a false negative.
 
Someone else will be on soon I'm sure who will be able to be more specific than I have been.

Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Yeah, they only ran a couple of celiac disease tests on you.  The immunoglobulin A (serum IgA) is just a control test to make sure you make enough IgA as to not cause false negatives in your IgA based tests (tTG IgA, EMA IgA, DGP IgA). About 5% of celiacs are low in IgA, compared to 1 in around 700 in the regular population, and that's why they check it when doing celiac disease testing.

 

Your tTG IgA is negative (at <2) and there is no way of telling what your result was - it could have been 1.99 or it could have been 0.01.  Your IgA is normal (albeit a tad on the low side) so that should not have affected your results.  That being said, the tTG IgA misses between 5 and 25% of all celiacs so it is possible you have celiac disease, but it is unlikely.  Page 12 of this report shows how sensitive the tests are: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

 

The EMA IgA is very similar to the tTG IgA but it tends to detect more advanced damage. It is quite unusual to have a positive EMA IgA with a negative tTG IgA - I've only seen that once in 2.5 years.

 

There are a few more tests you could do if you resume eating gluten (tests require 2-3 months of eating 1-2 slices of bread per day prior to testing). The deaminated gliadin peptides tests (DGP IgA and DGP IgG) will often catch cases of celiac disease that the tTGIgA misses, especially early cases.  The tTG IgG often catches some celiacs that the tTG IgA misses; the same goes for the EMA IgG.  The anti-gliadin antibodies tests (AGA IgA and AGA IgG) are older and less reliable tests that I would only get done if the DGP tests were unavailable.

 

That being said, if you are happy to go gluten-free, and stay gluten-free, there is no need to test. You may have non-celiac gluten sensitivity (NCGS) for which there are no blood tests, only a positive response to the gluten-free diet is diagnostic.  It could also be celiac disease, so if you ever decide to resume eating gluten, you will need to be tested for celiac disease after a few months of eating gluten.

 

Best wishes in whatever you decide to do.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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Yeah, they only ran a couple of celiac disease tests on you. The immunoglobulin A (serum IgA) is just a control test to make sure you make enough IgA as to not cause false negatives in your IgA based tests (tTG IgA, EMA IgA, DGP IgA). About 5% of celiacs are low in IgA, compared to 1 in around 700 in the regular population, and that's why they check it when doing celiac disease testing.

Your tTG IgA is negative (at <2) and there is no way of telling what your result was - it could have been 1.99 or it could have been 0.01. Your IgA is normal (albeit a tad on the low side) so that should not have affected your results. That being said, the tTG IgA misses between 5 and 25% of all celiacs so it is possible you have celiac disease, but it is unlikely. Page 12 of this report shows how sensitive the tests are: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

The EMA IgA is very similar to the tTG IgA but it tends to detect more advanced damage. It is quite unusual to have a positive EMA IgA with a negative tTG IgA - I've only seen that once in 2.5 years.

There are a few more tests you could do if you resume eating gluten (tests require 2-3 months of eating 1-2 slices of bread per day prior to testing). The deaminated gliadin peptides tests (DGP IgA and DGP IgG) will often catch cases of celiac disease that the tTGIgA misses, especially early cases. The tTG IgG often catches some celiacs that the tTG IgA misses; the same goes for the EMA IgG. The anti-gliadin antibodies tests (AGA IgA and AGA IgG) are older and less reliable tests that I would only get done if the DGP tests were unavailable.

That being said, if you are happy to go gluten-free, and stay gluten-free, there is no need to test. You may have non-celiac gluten sensitivity (NCGS) for which there are no blood tests, only a positive response to the gluten-free diet is diagnostic. It could also be celiac disease, so if you ever decide to resume eating gluten, you will need to be tested for celiac disease after a few months of eating gluten.

Best wishes in whatever you decide to do.

Thanks for all of your informative input - I really appreciate it all!!

That being said, I am just a slight bit confused (sorry; stay with me as I am really new to all of this). I am just concerned that my already being gluten free for a short time prior to my blood test could have had an effect on my results - could it have? And more importantly, why would my doctor advice I go gluten free prior to my testing for diagnostic purposes? I have read several places that this really defeats the purpose of testing at all and makes results a "false negative."

I also read that doing an IgA test is not enough & the full work up needs to include IgG testing as well because if your IgA is low (which mine certainly was dangerously close to being too low as it was very close to that end of the spectrum) it means your body does not produce enough IgA to validate testing, hence the need for the IgG. Is this true? I never got the IgG portion & I am kicking myself for being cast under the assumption my doctor was testing me for every and all necessary avenues. Also, the fact that I am being tested and diagnosed by an allergist makes me a bit wary as I know they are really "deficient" in celiac knowledge, even more so than a GP.

One more question concerning my tTG IgA - what exactly does <2 mean? I am no math genius but I learned that < means "greater than" and wouldn't this define that as "greater than 2"? Even if it is greater than two but less than 3 I am basically flirting with a positive result, no? Like I said, I had already began my STRICT gluten-free diet prior to testing per my doctor's request & couldn't this have lowered that number? My body has always, always been quick to heal & so if my results were immediately decreased I wouldn't stand surprised, also when i consider how quickly my symptoms disappeared & were reduced this also stands to confirm my argument. I'm really just wondering here.

I know what I know about my body & I'm not looking for anyone here to tell me what I already know - being that if I feel better being "de-glutened" I should remain that way. I am planning on staying gluten-free as my almost 10 years of ridiculous & seemingly non-connective symptoms are dwindling drastically & I am elated to say the least about that. I'm just sick and tired of suffering in such unimaginable and weird ways, so to speak.

Thanks so much again & I apologize for the series of questions.

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How long were you reducing your gluten and how much were you eating when you were tested?  You don't need to eat much each day, a piece of bread or so.  Also, numbers do not fall off that quickly.  If it was only a week or two, you would still see some markers.  <2 is exactly that, but if it was 3, they would have put 3.  The range for for the ttIgA is 4-10 is a weak positive and 10+ being positive.  Most doctors would not give you a positive diagnosis with a 4 without more testing to back it up. Being between 2-3 is confidently negative on that test.  Without a full panel it's hard to say what exactly is going on here.  Your total IgA is well within the normal range so those numbers should be accurate.  If you were only gluten-free for 2 days, your numbers are very accurate.

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How long were you reducing your gluten and how much were you eating when you were tested? You don't need to eat much each day, a piece of bread or so. Also, numbers do not fall off that quickly. If it was only a week or two, you would still see some markers. <2 is exactly that, but if it was 3, they would have put 3. The range for for the ttIgA is 4-10 is a weak positive and 10+ being positive. Most doctors would not give you a positive diagnosis with a 4 without more testing to back it up. Being between 2-3 is confidently negative on that test. Without a full panel it's hard to say what exactly is going on here. Your total IgA is well within the normal range so those numbers should be accurate. If you were only gluten-free for 2 days, your numbers are very accurate.[/quote/]

As I stated above, I was consuming no gluten at all & I know the standard "two pieces of bread each day" is the recommended amount. My consumption was strictly no gluten & had been for several days.

I am really just confused as to why my doctor would suggest a gluten-free diet prior to testing? I am sure he was confident that I do have an intolerance - Celiac or not - & I know this to be true with confidence also seeing as my symptoms have cleared up dramatically like day & night.

Also, what about what I had said above about a low IgA reading? I know this creates a false negative at times & a further testing of the IgG panel needs to be ran because of this. Unfortunately, I am already strictly gluten-free & don't plan on "re-glutening" just to get an accurate positive on a blood panel. I know some individuals need this to move on but I know what I know & don't want to subject myself to those symptoms ever again as they were horrible.

Thanks again for addressing my series of unending questions!

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Also, has anyone else here experienced false negative results? If so, does anyone know how prevalent these readings are? I read that one in four celiac's are missed through blood panel readings.

I am really just reaching here to see if someone can give me their story so I could see if I can relate. Thanks again.

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what is several days though--that is the question, 4 or 5 days is not going to make a difference in your results--4 weeks, probably might have some effect.  False negatives happen 1-2% of the time so it's possible--or it could just be something else.  Without the TTIgG tests, you won't know for sure though.  You could still be negative on the IgA test but be positive on the IgG.  Your IgA reading is not low, it's still normal, even if it is on the low side of normal.  The problem seems to be that your dr didn't run the full tests and you have partial answers vs getting a full picture of what is going on.  You could also ask for an endoscope.  There are a lot of people that don't tolerate gluten that are not celiac though too.

 

http://celiac.org/celiac-disease/diagnosing-celiac-disease/screening/

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Sorry to say it often happens that doctors tell a person not to eat gluten without realizing it can invalidate the tests.  We have seen it many times.  I think the best thing to do is what you are doing.  Educate yourself the best that you can.  Find a doctor (could be the one you have now) that will listen to you or information you bring in.  Get whatever tests that you need and move on with it.

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Thanks for all of your informative input - I really appreciate it all!!

That being said, I am just a slight bit confused (sorry; stay with me as I am really new to all of this). I am just concerned that my already being gluten free for a short time prior to my blood test could have had an effect on my results - could it have? And more importantly, why would my doctor advice I go gluten free prior to my testing for diagnostic purposes? I have read several places that this really defeats the purpose of testing at all and makes results a "false negative."

I also read that doing an IgA test is not enough & the full work up needs to include IgG testing as well because if your IgA is low (which mine certainly was dangerously close to being too low as it was very close to that end of the spectrum) it means your body does not produce enough IgA to validate testing, hence the need for the IgG. Is this true? I never got the IgG portion & I am kicking myself for being cast under the assumption my doctor was testing me for every and all necessary avenues. Also, the fact that I am being tested and diagnosed by an allergist makes me a bit wary as I know they are really "deficient" in celiac knowledge, even more so than a GP.

One more question concerning my tTG IgA - what exactly does <2 mean? I am no math genius but I learned that < means "greater than" and wouldn't this define that as "greater than 2"? Even if it is greater than two but less than 3 I am basically flirting with a positive result, no? Like I said, I had already began my STRICT gluten-free diet prior to testing per my doctor's request & couldn't this have lowered that number? My body has always, always been quick to heal & so if my results were immediately decreased I wouldn't stand surprised, also when i consider how quickly my symptoms disappeared & were reduced this also stands to confirm my argument. I'm really just wondering here.

I know what I know about my body & I'm not looking for anyone here to tell me what I already know - being that if I feel better being "de-glutened" I should remain that way. I am planning on staying gluten-free as my almost 10 years of ridiculous & seemingly non-connective symptoms are dwindling drastically & I am elated to say the least about that. I'm just sick and tired of suffering in such unimaginable and weird ways, so to speak.

Thanks so much again & I apologize for the series of questions.

 

Ask lots of questions.  :)  Celiac an dthe diagnositic criteria ARE very confusing. Asking questions will help others who come along behind you.  :)  Most people around here are happy to help.

 

For a minority of celiacs, being gluten-free for a week or so can affect their test results and cause a falsely negative result but for most, it takes months on the gluten-free diet to get negative results, and for a few it can take years.  I'm afraid the only way to check if your results were accurate is to retest after a gluten challenge (eating gluten) of 2-3 months.  If you were only gluten-free a week, then chances are good that your result is not falsely negative, but you can't be sure.

 

Your serum IgA is in the low end of normal but it is still normal.  It should be high enough not to affect your celiac results.  Your tTG IgA , at the most, was just over the halfway point of the normal range of 0-3.  Your result was less than 2 (<2) so at the most you had a 1.99, and that is not very close to the upper limit of 3.   BUT, it is a good idea to have the IgG based tests (tTG IgG, DGP IgG) run because some celiacs are only positive in those tests even when the serum IgA is perfectly fine. It is not the majority, but it does happen enough that it should be checked.  The same thing goes for the DGP tests, which often catch celiacs that the tTG tests missed.  This also holds true for the biopsy catching celiacs even if their blood tests were all negative.

 

You might want to consider having the tTG IgG, DGP IgA, and DGP IgG tests done.  Resume gluten for a while (depending on how long you were gluten-free) and then test, or even try testing now... you never know.

 

Good luck.  I hope you continue to feel better gluten-free.  :)


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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Ask lots of questions. :) Celiac an dthe diagnositic criteria ARE very confusing. Asking questions will help others who come along behind you. :) Most people around here are happy to help.

For a minority of celiacs, being gluten-free for a week or so can affect their test results and cause a falsely negative result but for most, it takes months on the gluten-free diet to get negative results, and for a few it can take years. I'm afraid the only way to check if your results were accurate is to retest after a gluten challenge (eating gluten) of 2-3 months. If you were only gluten-free a week, then chances are good that your result is not falsely negative, but you can't be sure.

Your serum IgA is in the low end of normal but it is still normal. It should be high enough not to affect your celiac results. Your tTG IgA , at the most, was just over the halfway point of the normal range of 0-3. Your result was less than 2 (<2) so at the most you had a 1.99, and that is not very close to the upper limit of 3. BUT, it is a good idea to have the IgG based tests (tTG IgG, DGP IgG) run because some celiacs are only positive in those tests even when the serum IgA is perfectly fine. It is not the majority, but it does happen enough that it should be checked. The same thing goes for the DGP tests, which often catch celiacs that the tTG tests missed. This also holds true for the biopsy catching celiacs even if their blood tests were all negative.

You might want to consider having the tTG IgG, DGP IgA, and DGP IgG tests done. Resume gluten for a while (depending on how long you were gluten-free) and then test, or even try testing now... you never know.

Good luck. I hope you continue to feel better gluten-free. :)

Wow - thanks for such a compassionate & understanding reply. Also, thanks for the encouragement as I go forward asking questions in a very unclear and otherwise confusing & slightly frustrating situation.

Unfortunately since I've been gluten-free & do feel and physically see progress (my skin is already clearing up slowly but surely) I really don't want to have to reintroduce gluten back into my diet. I really do feel better & though I'm not 100% sitting comfortably with the whole "self-diagnosis" but I can see why it is necessary sometimes.

Ive read somewhere along my research of Celiac that it can take an average of about nine years to reach an accurate & complete diagnosis - ive been suffering with symptoms for almost ten years now. I really am surprised that my blood results are negative, which is why I've so intricately studied the exact numbers & questioned if it meant "something" that they were close to being low or within the appropriate range.

I am kicking myself that I didn't know what to fight for when my doctor wrote out the blood script. He simply put "Celiac Panel" & being new to this disease, I didn't know there was a "complete" panel & a "skimped out" (so to speak) one as well. It looks as though I've been cheated & can't really go back from here.

How likely is it that someone would have a false negative? Is it especially common if someone has a negative IgA result that they would have a positive IgG?

Feel my frustration in wishing I had gotten the IgG panel - UGH!

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How likely is it that someone would have a false negative? Is it especially common if someone has a negative IgA result that they would have a positive IgG?

Feel my frustration in wishing I had gotten the IgG panel - UGH!

 

I've seen different stats than SMRI.  False positives occur very infrequently at a low rate like 1-2% - they almost never happen. On the other hand, false negatives can happen a fair bit. The tTG IgA has a sensitivity of only 75-95%, so that means that on it's best day it misses 1 in 20 celiacs, and on it's worst day it can miss 1 in 4 celiacs.  While false negatives happen in a minority of cases, they are not rare. I would guess most people joined this site because they had conflicting test results (one test or other ends up negative).

 

I tend to look at page 12 of the World Gastroenterology Report on Celiac Disease Practices, page 12: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdfIt lists each test and how sensitive it is as well as how specific to celiac disease it is.

 

And don't kick yourself for not knowing the tests, most of us didn't - I know that I did not.  I had the exact same tests run as you but they came up positive.  I then had my kids tested because 2 of 3 had some symptoms and they were all negative. Lo and behold, when I put them on a gluten-free diet their symptoms cleared up... What a coincidence, eh?  LOL ;) I assume they have celiac disease, with a mom who has it, but at this point, we can't know because the doctors here wouldn't give them any other test but the tTG IgA, and the EMA IgA if the first was positive (which it wasn't).

 

You're educating yourself now, and that is the important thing.  :)  Best wishes.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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I've seen different stats than SMRI. False positives occur very infrequently at a low rate like 1-2% - they almost never happen. On the other hand, false negatives can happen a fair bit. The tTG IgA has a sensitivity of only 75-95%, so that means that on it's best day it misses 1 in 20 celiacs, and on it's worst day it can miss 1 in 4 celiacs. While false negatives happen in a minority of cases, they are not rare. I would guess most people joined this site because they had conflicting test results (one test or other ends up negative).

I tend to look at page 12 of the World Gastroenterology Report on Celiac Disease Practices, page 12: http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdfIt lists each test and how sensitive it is as well as how specific to celiac disease it is.

And don't kick yourself for not knowing the tests, most of us didn't - I know that I did not. I had the exact same tests run as you but they came up positive. I then had my kids tested because 2 of 3 had some symptoms and they were all negative. Lo and behold, when I put them on a gluten-free diet their symptoms cleared up... What a coincidence, eh? LOL ;) I assume they have celiac disease, with a mom who has it, but at this point, we can't know because the doctors here wouldn't give them any other test but the tTG IgA, and the EMA IgA if the first was positive (which it wasn't).

You're educating yourself now, and that is the important thing. :) Best wishes.

Hm, interesting about their symptoms clearing up with a gluten-free diet because that's what has/currently is happening to me. Without accurate results from blood tests I am left to go by my results from the diet switch. I have heard that is the best way to go anyway.

I am guessing that because my dr adviced the gluten-free diet before my blood work that he was fairly confident that is the root of my issues & had faith it would help to clear up symptoms, which it has!

He needs several weeks to clear read my blood results he said so maybe he will provide some insightful information!

Thanks for all your assistance & kind words.

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This has no scientific backing or anything, just my personal opinion. I would bet that everyone that has the genes for celiac has symptoms that would clear up by going gluten free even without testing positive for celiac, I think we all start sensitive to gluten. I have had symptoms from birth, but don't think I would have tested positive that whole time, but I will never know, can't go back in time. My antibody level was only 37 and my daughter's was >100 and I've been a whole hell of a lot sicker than her. 9 months post diagnosis and I'm still sicker than her. I wouldn't put too much stock in your numbers, just how you feel. I had my son and daughter tested and my daughter is positive and my son isn't but he has had more prominent symptoms of celiac than she did, symptoms that have cleared up with him being mostly gluten-free, just getting gluten at school. Do I think he has celiac now and just isn't positive yet? No, but I do think he benefits from a gluten free diet. I will still get him tested every two years. Like I said, this is my personal opinion. You might never get closure or a diagnosis, but at least you know you have a solution. I have had ONE of my symptoms clear completely in the last nine months, the rest have improved. The one is worth it though, I have never been able to say that I have gone 3/4 of a year without a migraine. Glad you have somewhat of an answer and hope you keep feeling better and better every day.


Diagnosed April 7th 2014

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Wow - one more question to inquire about..

I just read that being on steroids can cause a false negative on blood test results.. Now I was on steroids prior to my testing, during and after. This is because my regular doctor (who I saw before my allergist) gave me steroids in attempt to clear up my mysterious rash, which I believe is DH.

Is this true??

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Wow - one more question to inquire about..

I just read that being on steroids can cause a false negative on blood test results.. Now I was on steroids prior to my testing, during and after. This is because my regular doctor (who I saw before my allergist) gave me steroids in attempt to clear up my mysterious rash, which I believe is DH.

Is this true??

From what I understand yes being on steroids will impact your blood tests.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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From what I understand yes being on steroids will impact your blood tests.

Hm, very interesting. This is what I have heard but my allergist (the one who requested the blood panel for me) was told that I was on a steroid. I guess he isn't too educated in the world of Celiac & gluten intolerances. I know some doctors don't want to "buy" that as a diagnosis, but it gives me peace of mind.

Does anyone else have info on the possibility of steroids effecting blood panel results? I'd love to hear them.

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Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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FYI, all too often we hear that doctors are not aware that steroid usage will affect the blood tests and that includes GI docs. 


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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FYI, all too often we hear that doctors are not aware that steroid usage will affect the blood tests and that includes GI docs.

Great - thank you. I know I was on a very high dose and I was on it for quite some time. I respect doctors highly.. Just amazed at their ability to understand some things.

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Also, if you DO have dh, the blood tests usually turn up false negative 60% of the time.

http://www.cureceliacdisease.org/archives/faq/what-is-dermatitis-herpetiformis-dh


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Also, if you DO have dh, the blood tests usually turn up false negative 60% of the time.

http://www.cureceliacdisease.org/archives/faq/what-is-dermatitis-herpetiformis-dh

You have been incredibly helpful!! I am certain my rash is DH (so is my dr), which is why I believe he advised I start the gluten-free diet ASAP. While my rash has cleared up considerably (and overnight - literally) it still does itch sometimes even in places where there is no blatant rash. Is this normal? Also, the places where it has/still is clearing up I seem to have skin discoloration..almost a purple/reddish hue? It's not really "scarring" technically, as it does eventually disappear, but it does that first. Strange!

This is interesting & really does convince me further that Celiac is my appropriate diagnosis. While I do sometimes experience GI troubles they are not severely overt, read: no vomiting, some nausea that comes in waves and goes (often after eating), but mostly issues related to bowel/lower intestinal problems.

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What you have just stated is consistent with dh. We tend to have fewer, milder GI symptoms. I had no vomiting, no real overt GI symptoms. I did have indigestion 24/7 there in the last year or two, bloating out the wazoo, belching like a sailor & the same nausea that you describe. Not all of us are the same & I now know mine had gone on for years & years & years. I did have other symptoms, among them, migraines, painful bones & joints. dizziness, brain fog, an "out there" feeling and more.

You can continue to have the rash & it will wax & wane even eating strict gluten-free until all the antibodies get out of your skin. DH is EXTREMELY sensitive to the tiniest gluten ingestion so one needs to be rabid about not getting glutened. 

And I'm hearing your next question coming. :lol:  A dh biopsy is the only way to "officially" dx dh but the same rules apply as with the blood tests & endoscopy --- you MUST be eating a full gluten diet for about 6 weeks to 2 months, the steroids will make it turn up false negative. If that weren't enough then the biopsy must be done correctly & there's the rub ~~~ try to get a derm who knows what they're doing for a dh biopsy ~~ good luck with that. 

So, what it all boils down to is this:

You know you are much better off gluten than on so just don't eat it.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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