My symptoms and blood test results – NCGS?

[Gluten-free-01]

Hi, I’m new to this forum. I’m not a native English speaker so sorry if my English is not perfect :-) 

For the past 2,5 years (at least) I’ve had typical symptoms of celiac disease.* When I realized this (too late I guess) I went gluten free immediately. So I’ve been gluten-free for approx. 2 weeks and some of the things have already improved.

My blood test was negative but I had the blood taken when I’d already been 10 days gluten-free. I have no idea how fast the antibodies go down. Do you think that being completely gluten-free for just 1-2 weeks could cause a false negative?

My GP doesn’t know anything about celiac disease and was very unhelpful so eventually I just went to a lab, ordered all the tests and paid for them myself.

My results:

Gliadin IgG 0,2 (Ref.: 0,0 – 0,9) neg.

Gliadin IgA 0,1 (Ref.: 0,0 – 0,9) neg.

Endomysium IgG negative

Endomysium IgA negative

ttg IgG 0,1 (Ref.: 0,0 – 0,9) neg.

ttG IgA 0,1 (Ref.: 0,0 – 0,9) neg.

total IgA 1,98 (Ref.: 0,70-4,00)

Do any of you guys have NCGS and experience exactly the same symptoms as those diagnosed with celiac disease? Do you stick to the diet even though you haven't been officially diagnosed?

Thanks

* migraine headaches, diziness, vertigo, brain fog, fatigue, tingling in my left arm, anxiety, irritability, nausea, loss of appetite, weight loss (my current weight is 108 lbs), abdominal pain/cramps, bloating, severe PMS, painful periods, seborrheic dermatitis.  More info: I have PCOS, endometriosis and thyroid issues – borderline underactive thyroid. My cousin has celiac disease and my grandfather died of gastrointestinal cancer unfortunately.

[Feeneyja]

Absolutely!  I have a history of weight loss, headache, fatigue, bone breaks, various GI issues, dizziness, sores in mouth, hair loss. I went gluten free for my daughter, who was biopsy and blood work negative (so NCGS) and belatedly realized I had all of these problems resolve on the gluten-free diet. I underwent a gluten challenge and was super sick, tested negative myself  (so that makes me NCGS also).  It has been about a month since the challenge and some things are not quite resolved (the dizziness primarily, hair loss and mouth sores are slowly getting better).

The reality is that you cannot tell the difference between celiac and NCGS by symptoms only. And they don't really know what NCGS is yet or how to test for it. 

[Victoria1234]

The only symptom I know of that is celiac for certain is dh, which must be diagnosed by a dermatologist.

[Gluten-free-01]

Feeneyja, Victoria1234: Thank you for your replies. 

I've decided that I won't go back to eating gluten. It makes me feel too bad. I 'poisoned' myself with dark chocolate with 70 percent cocoa content yesterday because later I found out it contained Glucose-fructose syrup. I'll have to be more careful about reading the ingredients lists.

I guess my body has become even more intolerant of gluten since I eliminated it.

Btw I've read some older posts and this forum is very helpful - much more helpful than doctors :-)

[Jmg]

  On 8/18/2017 at 12:19 PM, Gluten_free_01 said:

Do any of you guys have NCGS and experience exactly the same symptoms as those diagnosed with celiac disease? 

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Yes!

 

  On 8/18/2017 at 12:19 PM, Gluten_free_01 said:

Do you stick to the diet even though you haven't been officially diagnosed?

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Yes!

  On 8/18/2017 at 12:19 PM, Gluten_free_01 said:

* migraine headaches, diziness, vertigo, brain fog, fatigue, tingling in my left arm, anxiety, irritability, nausea, loss of appetite, weight loss (my current weight is 108 lbs), abdominal pain/cramps, bloating, severe PMS, painful periods, seborrheic dermatitis.  More info: I have PCOS, endometriosis and thyroid issues – borderline underactive thyroid. My cousin has celiac disease and my grandfather died of gastrointestinal cancer unfortunately.

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Most of those I get also. Not so much the migraines, although I get what may be retinal migraines, not sure about that. 

Painful periods and endometriosis - No - there are some things gluten can't get me for thankfully

Anyway, I was stunned to be negative for celiac as I enjoyed such a good response to the gluten-free diet. I've stopped worrying about it now. You may find some people will dismiss you as you're not diagnosed celiac. Ignore them, NCGS is a genuine condition, it's just not as well understood yet and the tests for it aren't yet here, but there is good research ongoing which may change that soon.

I find I'm very sensitive to small amounts of gluten contamination as my celiac friends here are. So I'm very careful on the diet. I don't have a problem with glucose / fructose or some brands of dark chocolate - your response there could've been to cross contamination rather than the glucose syrup. 

What country are you from? Maybe we can help with safe brands?

Otherwise, welcome to the forum and its nice to have another NCGS person to compare notes with

Matt 

 

[Gluten-free-01]

Thanks Matt :-)

I'm from the Czech Republic (Central Europe).

Yes, it might have been cross contamination, I think you're right. But I'll avoid the syrup too because I've found out that sometimes it is made of wheat. 

I like your 'Robinson Crusoe' post. I read it a few days ago. It helped me understand some things about myself.  So thanks for taking the time to write it and sharing it with us :-)

[Victoria1234]

  On 8/20/2017 at 7:46 PM, Gluten_free_01 said:

Thanks Matt :-)

I'm from the Czech Republic (Central Europe).

Yes, it might have been cross contamination, I think you're right. But I'll avoid the syrup too because I've found out that sometimes it is made of wheat. 

I like your 'Robinson Crusoe' post. I read it a few days ago. It helped me understand some things about myself.  So thanks for taking the time to write it and sharing it with us :-)

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Probably the only reason to stay away from your cacao glucose fructose syrup is to avoid the calories.... glucose is not gluten. 

Where do you live in the Czech Republic? I'm fairly familiar with Prague, but that's all. I love your foods very much (and alcohol).

[Gluten-free-01]

  On 8/20/2017 at 7:59 PM, Victoria1234 said:

Probably the only reason to stay away from your cacao glucose fructose syrup is to avoid the calories.... glucose is not gluten. 

Where do you live in the Czech Republic? I'm fairly familiar with Prague, but that's all. I love your foods very much (and alcohol).

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Calories would be ok - I need to gain some weight :-) But I've found this:

How is GFS made?

GFS is made from starch by first making a glucose syrup. The linked glucose molecules in starch are hydrolysed into free glucose molecules. Then, with the use of enzymes, some of the glucose is changed into fructose in a process called isomerisation. The starch source is chosen depending on local availability of the raw material suited for the starch extraction process. Maize was most commonly used in the past, but in recent years the use of wheat has increased as it is a locally more available source of starch. Sourcing of the raw material is mainly done from European origin.

Open Original Shared Link

Yes, I'm from Prague :-) 

 

[Victoria1234]

  On 8/20/2017 at 8:08 PM, Gluten_free_01 said:

Calories would be ok - I need to gain some weight :-) But I've found this:

How is GFS made?

GFS is made from starch by first making a glucose syrup. The linked glucose molecules in starch are hydrolysed into free glucose molecules. Then, with the use of enzymes, some of the glucose is changed into fructose in a process called isomerisation. The starch source is chosen depending on local availability of the raw material suited for the starch extraction process. Maize was most commonly used in the past, but in recent years the use of wheat has increased as it is a locally more available source of starch. Sourcing of the raw material is mainly done from European origin.

Open Original Shared Link

Yes, I'm from Prague :-) 

 

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Before you decide!

Read this first Open Original Shared Link

then read the study that goes with it Open Original Shared Link

[Jmg]

  On 8/20/2017 at 7:46 PM, Gluten_free_01 said:

I like your 'Robinson Crusoe' post. I read it a few days ago. It helped me understand some things about myself.  So thanks for taking the time to write it and sharing it with us :-)

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That's great to hear, thanks for letting me know  and well done on getting through it!

Prague is one of my favourite cities. Aside from the wonderful architecture and cultural activity I think it may have the highest concentration of gorgeous looking girls in the world! I'm sorry you can't enjoy that great beer and quite a few of those lovely dishes.  

You don't have to worry about the wheat derived glucose 

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 It is such a highly processed and purified ingredient that the source of the starch does not matter. Even if you see glucose syrup derived from wheat on a label, it is still gluten free

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Open Original Shared Link

As I said, that doesn't mean you shouldnt avoid that chocolate however.

Do you have an Aldi near you? The Moser Roth dark chocolate is safe, good value and delicious!

[Gluten-free-01]

Ok guys, I'm not an expert. Maybe it was really just cc as Matt said. Or my body is just too sensitive now and this thing is too artificial/chemical. I feel that real unprocessed food is better for me now.  

It won't be a problem to find another brand. The Moser Roth doesn't sound familiar to me but I'll see if I can find it in local supermarkets. I think brands like Lindt or Ritter should also be ok.  

[Jmg]

Unprocessed food is great, but a life without chocolate  no way! Am sure you will find a suitable brand.  I don't eat Lindt, think they may use barley, others may know more. 

The Moser Roth are Aldi own brand. Looks like Aldi aren't in CR so not an alternative for you sorry. 

Maybe check with these guys: Open Original Shared Link

 

ps (also not an expert!)

[Gluten-free-01]

  On 8/18/2017 at 12:19 PM, Gluten_free_01 said:

My blood test was negative but I had the blood taken when I’d already been 10 days gluten-free. I have no idea how fast the antibodies go down. Do you think that being completely gluten-free for just 1-2 weeks could cause a false negative?

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New info: I was really curious about this so I sent an email to the lab on Friday asking how fast would the antibodies go down. Today, I got a reply from the Head of the Laboratory (Clinical Immunology) and she said that the antibodies go down really fast - within a few days.

So, now I know that my test result could have easily been a false negative :-( 

Maybe this info will be useful to someone who hasn't been tested yet.

If you want to get accurate test results, don't make the same mistake as me :-)

[Jmg]

Yes, because each persons immune system is different there's a lot of uncertainty around tests. I think I'd be gluten-free for a couple of weeks when I first tested and my doctor thought it wouldn't make a difference. I often wonder if I'd have got a test just before going gluten-free, when I felt at deaths door, whether I'd have got a different answer. I also cut my challenge a little short due to being so Ill on gluten which may have prejudiced the result. 

Dont think your not alone however, so many here remove the gluten first, typically for good reasons and sometimes at the urging of a medical professional who themselves may not be aware of the testing protocol...

[Gluten-free-01]

  On 8/21/2017 at 11:39 AM, Jmg said:

I often wonder if I'd have got a test just before going gluten-free, when I felt at deaths door, whether I'd have got a different answer. 

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Exactly. 

I feel a bit confused.. don't think that I'd be able to do a gluten challenge though.. so I'll just trust my body and intuition more than the results. 

I think I'm having some withdrawal issues now and hope I'll feel better in a few weeks.    

[mary14889]

Your experience is exactly the same as mine.  I could have dictated the story and  the whole list of symptoms up to More Info.  I am also sensitive to dark chocolate.  I went gluten-free on my own and was tested a few weeks after going gluten-free and my results were negative.  I ate a couple of slices of bread the night before seeing the GI and getting tested so he could hear my stomach rumble.  He said the only unusual finding was eosinophils in my intestinal tract (I think he did a sigmoidoscopy- we were probably both clueless about needing an endoscopy.  That was 19 1/2 years ago).  I was tested for PCOS because my sister has it.   My test was at least 10 years  after going gluten-free.  I was told there are a few cysts but not enough to call it PCOS.  No thyroid issues.   My symptoms all evaporated within two weeks of going gluten-free!  It was life changing.  I challenged with gluten a couple of times and became convinced.  As with others, I 'm surely more sensitive now to the tiniest gluten accident.  I've been healthy as an ox every since (knock on wood) and feel extremely lucky to have figured it out - myself without any help from my clueless doctor- but wish I could have been spared 30 years of migraines - migraine was the worst symptom until GI problems started full blast (literally) after a double round of antibiotics.  

[Jmg]

Welcome Mary

[Gluten-free-01]

  On 8/21/2017 at 4:52 PM, mary14889 said:

Your experience is exactly the same as mine.  I could have dictated the story and  the whole list of symptoms up to More Info.  I am also sensitive to dark chocolate.  I went gluten-free on my own and was tested a few weeks after going gluten-free and my results were negative.  I ate a couple of slices of bread the night before seeing the GI and getting tested so he could hear my stomach rumble.  He said the only unusual finding was eosinophils in my intestinal tract (I think he did a sigmoidoscopy- we were probably both clueless about needing an endoscopy.  That was 19 1/2 years ago).  I was tested for PCOS because my sister has it.   My test was at least 10 years  after going gluten-free.  I was told there are a few cysts but not enough to call it PCOS.  No thyroid issues.   My symptoms all evaporated within two weeks of going gluten-free!  It was life changing.  I challenged with gluten a couple of times and became convinced.  As with others, I 'm surely more sensitive now to the tiniest gluten accident.  I've been healthy as an ox every since (knock on wood) and feel extremely lucky to have figured it out - myself without any help from my clueless doctor- but wish I could have been spared 30 years of migraines - migraine was the worst symptom until GI problems started full blast (literally) after a double round of antibiotics.  

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Thanks Marry. Your story is very similar indeed. I totally agree that the migraines are the worst symptom - the pain was terrible and there were times when I was almost convinced that I had a brain tumor.

I'm glad you replied to my post because at least I can see that it's not all just in my head (I feel paranoid sometimes) and see that all these issues can really be interconnected and gluten related.

[Gluten-free-01]

  On 8/20/2017 at 7:15 PM, Jmg said:

Most of those I get also. Not so much the migraines, although I get what may be retinal migraines, not sure about that.

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Matt, do you still have the vision problems?

I’ve been reading about diabetes, and there’s a condition called diabetic retinopathy. The symptoms are similar to those of retinal migraines and also reminded me of the vision issues you mentioned in your R.C. post. So I just thought I would let you know.

PS: I wouldn’t wish diabetes on anyone, of course.

Open Original Shared Link

[plumbago]

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New info: I was really curious about this so I sent an email to the lab on Friday asking how fast would the antibodies go down. Today, I got a reply from the Head of the Laboratory (Clinical Immunology) and she said that the antibodies go down really fast - within a few days.

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Only for some tests. You had several.

 

Tissue Transglutaminase Immunoglobulin G

In reaction to TTG, IgG is produced. Raised IgG antibodies demonstrate long-term immune response, indicating ingestion of gluten from 3-6 months, sometimes up to a year, preceding test.

Tissue Transglutaminase Immunoglobulin A
The enzyme TTG deamidates gliadin (a broken-down component of gluten). In reaction to the presence of TTG, the antibody immunoglobulin A (IgA) is produced. Raised IgA antibodies indicate short-term immune response, indicating ingestion of gluten 2-4 weeks preceding the test.

Plumbago

[Gluten-free-01]

  On 9/4/2017 at 2:48 PM, plumbago said:

Only for some tests. You had several.

 

Tissue Transglutaminase Immunoglobulin G

In reaction to TTG, IgG is produced. Raised IgG antibodies demonstrate long-term immune response, indicating ingestion of gluten from 3-6 months, sometimes up to a year, preceding test.

Tissue Transglutaminase Immunoglobulin A
The enzyme TTG deamidates gliadin (a broken-down component of gluten). In reaction to the presence of TTG, the antibody immunoglobulin A (IgA) is produced. Raised IgA antibodies indicate short-term immune response, indicating ingestion of gluten 2-4 weeks preceding the test.

Plumbago

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Thank you, plumbago. This is very interesting, I didn't know that. Would you pls give me a link to the source of this info?

Btw I've been off gluten for a month and feel much better. So, I act as if the test was positive anyway.    

[plumbago]

It was a link (I believe) from Southern Illinois University which is unfortunately no longer active. This was the link. Open Original Shared Link

 

In addition, there’s a book I frequently refer to Recognizing Celiac Disease by a doctor and a nurse. There are other books, one by Dr Peter Greene, which I’ve referred to in the past.

 

Basically, I compiled a table (trying to post below:)) which is material most likely gathered from several different sources, including, by the way, this site. There are people on here who are much more knowledgeable than I am about the tests.

 

tTG-IgA	Tissue Transglutaminase Immunoglobulin A	Self	The enzyme TTG deamidates gliadin (a broken-down component of gluten). In reaction to the presence of TTG, the antibody immunoglobulin A (IgA) is produced. Raised IgA antibodies indicate short-term immune response, indicating ingestion of gluten 2-4 weeks preceding the test.   Not 100% specific: there are other causes of a positive test, including diabetes, heart failure, Crohn’s and others. Also, people who have celiac disease can get a negative result with this test. Machine-read.
tTG-IgG	Tissue Transglutaminase Immunoglobulin G	Self	In reaction to TTG, IgG is produced. Raised IgG antibodies demonstrate long-term immune response, indicating ingestion of gluten from 3-6 months, sometimes up to a year, preceding test.   Valuable in diagnosing Celiac in patients with selective IgA deficiency.
DGP-IgG	Deamidated Gliadin Peptide Immunoglobulin G		Newer, excellent test that detects an immune response to a very specific fragment of the gluten molecule (gliadin peptide).   If both DGP are high, celiac disease almost certain. Accurate for detecting gut damage of celiac disease, so good it is likely to make endoscopy redundant. Does not replace the IgG-gliadin test.
DGP-IgA	Deamidated Gliadin Peptide Immunoglobulin A		(ELISA) measures antibodies directed against deamidated Gliadin peptides (DGP) in human serum or plasma.
AGA-IgG	Anti-Gliadin Antibody Immunoglobulin G	Anti-self	(Older gliadin test.) The antibody immunoglobulin G (IgG) is produced in response to gliadin. Raised IgG antibodies demonstrate long-term immune response, indicating ingestion of gluten from three to six months, sometimes up to a year, preceding the test.   Not specific & sensitive for Celiac, but accurate as an inexpensive test for evidence of a gluten reaction
AGA-IgA	Antigliadin Antibody Immunoglobulin A	Anti-self	The antibody immunoglobulin A (IgA) is produced in response to gliadin. Raised IgA antibodies indicate short-term immune response, indicating ingestion of gluten 2-4 weeks preceding the test.   Not specific & sensitive for Celiac, but accurate as an inexpensive test for evidence of a gluten reaction
Total IgA	Immunoglobulin A	Self	The celiac blood test panel includes the total serum IgA test because some people (3%) are IgA-deficient. If you have a very low total serum IgA, that can invalidate the three blood tests that rely on your IgA levels. People with celiac disease suffer from low total IgA levels about 10 to 15 times more frequently than people in the general population.
EMA IgA	Anti-endomysial antibody IgA	Self	EMA stands for antiendomysial antibodies, which are antibodies produced by the body that attack the body's own tissue. When the EMA-IgA is positive, the patient almost certainly has celiac disease. However, the test also can produce false negative results in patients with celiac disease but only partial villous atrophy.   Highly specific (>95%), and >90% sensitive. The EMA antibodies correlate to degree of villous atrophy. Observer-dependent.

 

[Jmg]

  On 9/4/2017 at 2:34 PM, Gluten_free_01 said:

Matt, do you still have the vision problems?

I’ve been reading about diabetes, and there’s a condition called diabetic retinopathy. The symptoms are similar to those of retinal migraines and also reminded me of the vision issues you mentioned in your R.C. post. So I just thought I would let you know.

PS: I wouldn’t wish diabetes on anyone, of course.

Open Original Shared Link

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Thanks that's very thoughtful

I very rarely get the occluded vision now, when it does occur I think it's down to cross contamination or a gluten exposure of some sort.

I've had many diabetes checks over the years and so far so good...

[Gluten-free-01]

Plumbago, thank you again for all this information  It's very useful. 

[Gluten-free-01]

  On 9/4/2017 at 3:39 PM, Jmg said:

Thanks that's very thoughtful

I very rarely get the occluded vision now, when it does occur I think it's down to cross contamination or a gluten exposure of some sort.

I've had many diabetes checks over the years and so far so good...

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You're welcome  It was just a suggestion. I'm glad to hear that your vision has improved and that you don't have diabetes!