Got my test results, please help.

[Matijas]

Hi all.

So, today I finally got my test results but I have no idea what they mean, can someone please explain them to me?
Results are in Croatian, if that's a problem, let me know.

Thank you in advance.

[PinkyGurl]

Your tests indicate you are negative for celiac.  The tTg IGA is the antibody test.  Anything less than 20 indicates you are not celiac.  The EMA is an older test and is measured in dilutions.  Anything 1 to 20 dilution is negative.  I do not see a result on your sheet but to be honest the tTg Iga test is far more accurate and specific anyway.

[Matijas]

Oh, so there's no need for biopsy or any further tests?

[Gemini]

On 7/18/2016 at 7:30 AM, PinkyGurl said:

Your tests indicate you are negative for celiac.  The tTg IGA is the antibody test.  Anything less than 20 indicates you are not celiac.  The EMA is an older test and is measured in dilutions.  Anything 1 to 20 dilution is negative.  I do not see a result on your sheet but to be honest the tTg Iga test is far more accurate and specific anyway.

The EMA is usually the slam dunk with celiac.  No other disease will cause a positive. In conjunction with the tTg/IgA, that is considered as good of a diagnosis as the biopsy.  tTg/IgA misses many people and that is why they do panels of more than one test.

Matijas.....as both of these are negative, it would appear that you do not have celiac.  However, they did not do a full celiac panel.  One of the tests included in that is the Total IgA, to see if you are deficient in IgA.  That can happen and is somewhat normal in some people. If you are IgA deficient, then none of the IgA antibody testing is valid because you do not make enough antibodies to test for.  They then will go to the IgG class of antibodies and do a tTg/IgG test. As none of those were included, I would call this insufficient testing. Do you have symptoms?  If so, could they do the biopsy anyway to see if you do have damage?

[Matijas]

Thank you very much for your reply, Gemini.

I have extreme meteorism ( I look like I'm pregnant, I'm very slim, even doctors were surprised ), severe abdominal pain, especially after toilet ( my stool is in order, never had any problems with it ) and chronic fatigue for nine years now.
We all thought I just got a lot of belly fat until I decided to get an ultrasound.
Could these be symptoms of gluten intolerance?

The problem is, I don't have access to a good doctor, maybe I should try to get an appointment with a specialist?

P.S. I'm on gluten-free diet for 10 days now and feel somewhat better...

 

[Gemini]

Yes, those symptoms are consistent with Celiac/gluten intolerance.  Doctors tend to not take people seriously when they don't have diarrhea but I never had it until the very end when I was very sick.  Then it kicked in. They tend to lose interest when you say you don't have it and that is a mistake. So, if they ask you that and you say no, then make sure they don't dismiss Celiac.  Chronic fatigue is another huge symptom.  Your body is not functioning right so fatigue is felt by most with Celiac.

I presented the way you describe. I was always very thin but had a bloated belly....not the most attractive look, it is?    If you can see a specialist, I would suggest that. But you must be eating gluten in order to be tested correctly.  I know that doesn't make people happy but eat at least a couple of slices of bread everyday.  I use bread as an example because its such a good source of gluten. After all testing is complete, then you can go ahead with trying the gluten-free diet seriously. You have to be very strict and stick with it for awhile to really see if it is a problem.  Hopefully, testing will give you some conclusive results. If you have any questions, we are here to help!

[PinkyGurl]

18 hours ago, Gemini said:

The EMA is usually the slam dunk with celiac.  No other disease will cause a positive. In conjunction with the tTg/IgA, that is considered as good of a diagnosis as the biopsy.  tTg/IgA misses many people and that is why they do panels of more than one test.

Matijas.....as both of these are negative, it would appear that you do not have celiac.  However, they did not do a full celiac panel.  One of the tests included in that is the Total IgA, to see if you are deficient in IgA.  That can happen and is somewhat normal in some people. If you are IgA deficient, then none of the IgA antibody testing is valid because you do not make enough antibodies to test for.  They then will go to the IgG class of antibodies and do a tTg/IgG test. As none of those were included, I would call this insufficient testing. Do you have symptoms?  If so, could they do the biopsy anyway to see if you do have damage?

It is very specific for celiac BUT it is read by human eyes and preformed by a human.  Which makes it sometimes not accurate due to human error.  My biopsys showed severe villi atrophy my tTg Iga was high but my EMA was 1:10 dilution.  the test is only as good as who is performing it.  TTg Iga is crunch and counted by a machine.  Far more accurate, I'm proof of that.

[Gemini]

6 hours ago, PinkyGurl said:

It is very specific for celiac BUT it is read by human eyes and preformed by a human.  Which makes it sometimes not accurate due to human error.  My biopsys showed severe villi atrophy my tTg Iga was high but my EMA was 1:10 dilution.  the test is only as good as who is performing it.  TTg Iga is crunch and counted by a machine.  Far more accurate, I'm proof of that.

No, not really.  I am very familiar with EMA testing and just because it is done and read by an actual trained human being does not make it any less accurate.  Machines are only as good as the person running the test.  So, the fact that you had a negative EMA proves nothing beyond the fact that any immune system testing is dicey to begin with.  Immune response varies so greatly from person to person and this is the reason you have such a wide variety of results seen here on the forum.  Many have negative blood work, only to go on to have severe damage on biopsy.  There have been many who also have different positives and negatives on their blood panel...it can be all over the place.  This is common with ALL immune testing and I know this because my sister is a lab tech who has 40 years of experience doing all kinds of testing.  This is why it is so hard to diagnose AI diseases.  Researchers are working on other testing that will be more of slam dunk than anything we have now.  But the EMA is considered definitive, if the test is positive, and in conjunction with a positive tTg/IgA. 

[Matijas]

Hey all, first thank you again.

Next week, I'm gonna take total IgA test so I'll keep you posted.

Kind regards!

P.S. Am I missing something or it's best to send someone with potential celiac directly to biopsy, all these blood tests seem like a waste of time to me?

[Matijas]

Hi all!

Got my IgA results, don't know what it means, anybody does?

I'm trying to find a specialist, so I'll keep you posted.

[Gemini]

1 hour ago, Matijas said:

Hi all!

Got my IgA results, don't know what it means, anybody does?

I'm trying to find a specialist, so I'll keep you posted.

I am trying to decipher the test and it looks to me like the Total IgA is fine.  Your number appears to be in the middle of the reference range, which would be sufficient IgA for testing.  I am in America so your country's testing is a bit different from here....I really hope I got that right! 

If you have severe enough symptoms of a GI problem, some doctors here would move onto a biopsy even with negative blood results.  I think if you cannot get a full Celiac panel done, then a scope with biopsy should come next. Severe bloating has a cause and they need to rule out a food problem. There can be other causes but food is usually a big trigger.

Yes, keep us updated!  We are here to help.

[Matijas]

Thank you, Gemini.  

Is it possible for non-celiac gluten sensitivity or intolerance to have this severe symptoms?
I'm on gluten free diet two weeks now and no change...

What are other causes of these symptoms beside food?

[Gemini]

3 hours ago, Matijas said:

Thank you, Gemini.  

Is it possible for non-celiac gluten sensitivity or intolerance to have this severe symptoms?
I'm on gluten free diet two weeks now and no change...

What are other causes of these symptoms beside food?

It is absolutely possible for non-Celiac gluten intolerance and/or gluten sensitivity to cause extreme symptoms. The difference between those and Celiac is that Celiac will cause actual small intestinal damage to the villi, while NCGI/gluten sensitivity can have extreme symptoms, there is no damage to the small intestine.  Other causes of bloating can be SIBO or small intestinal bacterial overgrowth.  The title pretty much says it all and you need antibiotics to help combat that. Basically, your small intestine's bacteria is out of whack and you have more bad bacteria than good. I know there is a test but have no experience with this. You may want to google it and read up on it and maybe ask a specialist about it too?  This is something they should be testing for anyway to figure out what is going on.  You could also have food allergies, as opposed to an intolerance like Celiac.  You can see why this is so hard to figure out sometimes!

Are you sure you are completely gluten free?  This diet has a big learning curve and cross contamination is important.  Please take a look, if you already have not, at this link.  It was written by a previous member of the forum and although it is a bit lengthy, it is what you need to know about following the diet and living gluten free successfully. She did a very good job on it!  Even tiny amounts in your diet can still cause symptoms.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

Have you been tested for vitamin deficiencies or anemia?  These could offer a clue to see whether you are malnourished or not. Many people with celiac have both deficiencies and anemia.  Between testing for these and genetic testing to see if you carry a Celiac gene might help you to rule it out if you cannot have a scope done.  But you do remember that you need to be eating gluten for the scope? 

[Matijas]

Hi all again.

I have an appointment with a specialist in two months so more waiting...

In the meantime, I have a question: if the problem is gluten intolerance, approximately how long does it take to lose all that trapped gas in stomach or intestine, wherever it is, while on a gluten-free diet?
Reminder: I have severe meteorism and look like I'm pregnant, I don't pass gas almost at all.

Thank you in advance.

[Gemini]

Hi Matijas!  Usually when someone with a gluten issue goes strictly gluten free, their GI problems improve right away, as far as severity goes.  There are some who have ongoing issues for awhile but with trapped gas, that might be something which dissipates more quickly.....no pun intended there!    I know when I was an undiagnosed Celiac, I had the same problem.  My gut would blow up with gas and it was very painful.  In the US and hopefully in your country, there are over the counter medications that are sold in pharmacies which will break up the gas in your gut.    Open Original Shared Link

These meds work very well so maybe you could see if you can use these in the short term until you see the specialist? I am not sure if this is gluten free but if you are going to be tested for Celiac, then that won't matter as you need to be consuming gluten for testing. I used these a lot before diagnosis and they really helped with the pain. They work fairly quickly after consuming also......which is great!

[Fundog]

I may have been a bit slow to notice, but it took me about six weeks gluten free before I realized my clothes were fitting better, and I could sit through dinner without wanting to unzip my pants.  Before then, I didn't understand what people meant by feeling bloated, lol.  Now I know, I was bloated!  But I don't have meteorism, so my experience might not be the same as yours.

[Matijas]

Thank you all, especially Gemini.
Will try some over the counter meds, hope they will help.

Another thing is bugging me; does consuming even the smallest amount of gluten really resets entire long lasting diet?
For example, if I'm on strict gluten free diet for a month and I accidentally consume very small amount of gluten, does it really nullify the entire diet/sends it to the beginning?
It doesn't make a lot of sense to me...

[cyclinglady]

57 minutes ago, Matijas said:

Thank you all, especially Gemini.
Will try some over the counter meds, hope they will help.

Another thing is bugging me; does consuming even the smallest amount of gluten really resets entire long lasting diet?
For example, if I'm on strict gluten free diet for a month and I accidentally consume very small amount of gluten, does it really nullify the entire diet/sends it to the beginning?
It doesn't make a lot of sense to me...

Yes it can!  Remember, this is not an allergy!  This is an autoimmune disorder, like lupus, multiple sclerosis, that is triggered by gluten.  Who knows what triggers other autoimmune disorders?  We are fortunate that we know the trigger for celiac disease -- gluten.  

Back to your question.  Really, the damage depends on the individual.  We all react differently.  But I can say from personal experience that a cross contamination exposure caused my celiac to flare up (as measured by antibody levels and my symptoms).  Celiacs can not cheat nor can they relax their guard around gluten.  

Make sure anything you put in your mouth is gluten-free and that includes the OTC meds you mentioned!  

[cyclinglady]

You could have celiac disease, but there are many things (like SIBO) that can cause trapped gas.  

[Matijas]

Hi all.

Well, it's been around twenty days since I've been taking Gas-X like meds (with simethicone), but no relief. Maybe I should drink bigger dose... Currently, I'm taking 80 mg four times per day.
I'm so exhausted, both mentally and physically...

Anyway, I have two questions:
First, is it good or bad to drink mineral/carbonated water if you have severe trapped gas like me?
Second: Is it possible to regain some physical strength/relieve fatigue with vitamin supplements?

Thanks in advance.

[Ennis-TX]

6 hours ago, Matijas said:

Hi all.

Well, it's been around twenty days since I've been taking Gas-X like meds (with simethicone), but no relief. Maybe I should drink bigger dose... Currently, I'm taking 80 mg four times per day.
I'm so exhausted, both mentally and physically...

Anyway, I have two questions:
First, is it good or bad to drink mineral/carbonated water if you have severe trapped gas like me?
Second: Is it possible to regain some physical strength/relieve fatigue with vitamin supplements?

Thanks in advance.

I found my gas issues were caused by carbs, and sugars, something about how the bacteria in my gut changed and started making me gassy and extremely bloated when they got a hold of any thing more then a tbsp of grains, beans, fruit, or starch carbs. And no amount of medicine helped. Changed to 1/4 servings of those and mostly protein, fat diet. As for vitamin supplements I found I have to take B vitamin supplements 3 times a day to not go zombie mode. I personally found Liquid Vitamins Energy & Stress and the Nero-logic from them helps along with the occasional 1/2 bottle of 5 hour. As to carbonated water I avoided it when bloated cause it made me feel worse.