Medical Results - unsure whether to seek further advice

[amelt]

In May, I went to an endocrinologist because I thought I may have hypothyroidism. My thyroid seems to be ok but because I was insistent that I am usually exhausted, constipated, fog-brained, moody and gassy I felt there must be something going on.

The doc ordered the following additional tests and these were the results:

 

Anti-Gliadin Peptides IgA, S: 15 RU/mL (ref range s 0-25)

Anti-Gliadin Peptides IgG, S: 2 RU/mL (ref range 0-25)

T-Transglutaminase Ab, IgA, S: 4 RU/mL (ref range 0-20)

T-Transglutaminase Ab, IgG, S: 20 RU/mL (ref range 0-10)

IgA: 4.3 g/L (ref range 1.4-4.5)

 

The endo believes that I have non-celiac gluten intolerance. He said that the reference ranges for the country I am based in (Singapore) are very wide and in other countries they are less so. He told me to just go on a gluten free diet and take probiotics.

I am a bit unsure that is all there needs to be done. I did not even know what NCGI was. Should I go to a gastroentologist based on this or just follow this advice? I am worried the insurance company will say I am being a hypochondriac of sorts and going on loads of doctor visits. My husband seems to think it is no big deal and I should just go gluten free.

Any thoughts?

[Ennis-TX]

We have several members here that are NCGI (Non Celiac Gluten Intolerant) and must stick to a gluten free diet. Your symptoms do align with this, by the way sometimes the blood test gives a false negative with this disease. A endoscope with biopsy is golden standard for celiac diagnosis. If you really want you can stay on the gluten diet til the testing is done (you have to be eating gluten for testing) and get the endoscope.  

If dealing with constipation, and the mood issues Magnesium Citrate can be a huge help and many are deficient in it. Natural Vitality Calm works great for this and you can order it on amazon I think for your country.  Start off with smaller 1/4 tsp doses and work up ove 1-2 weeks to the full dose or what you find you need to help with your mood and regular .

[amelt]

  On 8/1/2017 at 4:49 PM, Ennis_TX said:

We have several members here that are NCGI (Non Celiac Gluten Intolerant) and must stick to a gluten free diet. Your symptoms do align with this, by the way sometimes the blood test gives a false negative with this disease. A endoscope with biopsy is golden standard for celiac diagnosis. If you really want you can stay on the gluten diet til the testing is done (you have to be eating gluten for testing) and get the endoscope.  

If dealing with constipation, and the mood issues Magnesium Citrate can be a huge help and many are deficient in it. Natural Vitality Calm works great for this and you can order it on amazon I think for your country.  Start off with smaller 1/4 tsp doses and work up ove 1-2 weeks to the full dose or what you find you need to help with your mood and regular .

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Thank you! I will get on to Amazon and get the Magnesium. It really upsets me when my children say "mummy how come you are in a good mood today?"

I also realised that we have been eating very little pasta and bread because my husband decided to go on a low carb diet earlier this year and have only been eating food containing gluten sparingly.

Thanks again.

[Jmg]

Hello

  On 8/1/2017 at 2:37 PM, amelt said:

I am a bit unsure that is all there needs to be done. I did not even know what NCGI was. Should I go to a gastroentologist based on this or just follow this advice? I am worried the insurance company will say I am being a hypochondriac of sorts and going on loads of doctor visits. My husband seems to think it is no big deal and I should just go gluten free.

Expand Quote  

NCGI is still a bit of a mystery, but there's more being learned all the time. You can find out more here: https://www.celiac.com/forums/topic/117969-non-celiac-gluten-sensitivity-a-resource/ It's really a label for people who exhibit reactions to gluten similar to celiac but who don't test positive in the blood tests or endoscopy. People like me as things turned out!

As to what you should do, it depends on what's important to you. If you want certainty you could push on to see the gastro and request an endoscopy. That may involve further bloods perhaps after eating more gluten in a challenge period. That's what I did after previously having gone gluten free and found it made an enormous difference to how I felt. I found the challenge period unpleasant but tolerable and the negative diagnosis at the end difficult to accept. Then I went gluten free in the same way I would've done if the test was positive, because I knew enough by then to know my body couldn't tolerate gluten. So if you go ahead be aware you may test negative but still find gluten is a problem for and the solution is the gluten free diet whether you're NCGI or Celiac.

If you just want to feel better then you could take the doctors advice, go gluten free and keep a food diary to see how your body reacts. If your symptoms go away you have enough of an answer to keep you honest on the diet. 

One final point. This has a genetic element. So a positive diagnosis may be helpful in getting your kids monitored. 

All the best,

Matt

 

[squirmingitch]

Wait a minute! That Ttg IgG is a red flag. The ref. range is o-10 & your result is a 20; that's a sure positive. You only need 1 positive on the blood work to advance to endoscopic biopsies to confirm celiac disease. My opinion would be to do that. Keep eating gluten daily until all testing is done.

[tessa25]

  On 8/2/2017 at 1:10 PM, squirmingitch said:

Wait a minute! That Ttg IgG is a red flag. The ref. range is o-10 & your result is a 20; that's a sure positive. You only need 1 positive on the blood work to advance to endoscopic biopsies to confirm celiac disease. My opinion would be to do that. Keep eating gluten daily until all testing is done.

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What she said. You need to  go to a gastroenterologist for the endoscopy/biopsies.

[amelt]

  On 8/2/2017 at 10:43 AM, Jmg said:

Hello

NCGI is still a bit of a mystery, but there's more being learned all the time. You can find out more here: https://www.celiac.com/forums/topic/117969-non-celiac-gluten-sensitivity-a-resource/ It's really a label for people who exhibit reactions to gluten similar to celiac but who don't test positive in the blood tests or endoscopy. People like me as things turned out!

As to what you should do, it depends on what's important to you. If you want certainty you could push on to see the gastro and request an endoscopy. That may involve further bloods perhaps after eating more gluten in a challenge period. That's what I did after previously having gone gluten free and found it made an enormous difference to how I felt. I found the challenge period unpleasant but tolerable and the negative diagnosis at the end difficult to accept. Then I went gluten free in the same way I would've done if the test was positive, because I knew enough by then to know my body couldn't tolerate gluten. So if you go ahead be aware you may test negative but still find gluten is a problem for and the solution is the gluten free diet whether you're NCGI or Celiac.

If you just want to feel better then you could take the doctors advice, go gluten free and keep a food diary to see how your body reacts. If your symptoms go away you have enough of an answer to keep you honest on the diet. 

One final point. This has a genetic element. So a positive diagnosis may be helpful in getting your kids monitored. 

All the best,

Matt

 

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I was kind of okay with going gluten-free and seeing how it goes. But I am kind of worried for my nine year old who was displaying similar symptoms and his symptoms have improved somewhat (still not perfectly because I suspect we have not read labels correctly or he has been having soy sauce which I only found out is not gluten free).

I don't want him to go through the endoscopy and more appointments and since my symptoms seem to be worse, I think I should see if I have anything first. What if I do have Celiac and my child has it too?

Thank you for all the info with the links...it will save me a lot of googling - been reading a lot of depressing articles about how gluten sensitivity is a fad.

[amelt]

  On 8/2/2017 at 1:10 PM, squirmingitch said:

Wait a minute! That Ttg IgG is a red flag. The ref. range is o-10 & your result is a 20; that's a sure positive. You only need 1 positive on the blood work to advance to endoscopic biopsies to confirm celiac disease. My opinion would be to do that. Keep eating gluten daily until all testing is done.

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Really? I don't understand these numbers so well and I was wondering whether it was just a weak positive

[tessa25]

  On 8/3/2017 at 1:59 AM, amelt said:

Really? I don't understand these numbers so well and I was wondering whether it was just a weak positive

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Unless your test results say weak positive that is not a weak positive. It's twice the normal value.

[amelt]

  On 8/3/2017 at 2:04 AM, tessa25 said:

Unless your test results say weak positive that is not a weak positive. It's twice the normal value.

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Thanks Tessa. I will contact a GI to ask for further tests. I am grateful that the endocrinologist ran these tests but it sounds like gluten issues are just not his field.

[cyclinglady]

  On 8/1/2017 at 2:37 PM, amelt said:

In May, I went to an endocrinologist because I thought I may have hypothyroidism. My thyroid seems to be ok but because I was insistent that I am usually exhausted, constipated, fog-brained, moody and gassy I felt there must be something going on.

The doc ordered the following additional tests and these were the results:

 

Anti-Gliadin Peptides IgA, S: 15 RU/mL (ref range s 0-25)

Anti-Gliadin Peptides IgG, S: 2 RU/mL (ref range 0-25)

T-Transglutaminase Ab, IgA, S: 4 RU/mL (ref range 0-20)

T-Transglutaminase Ab, IgG, S: 20 RU/mL (ref range 0-10)

IgA: 4.3 g/L (ref range 1.4-4.5)

 

The endo believes that I have non-celiac gluten intolerance. He said that the reference ranges for the country I am based in (Singapore) are very wide and in other countries they are less so. He told me to just go on a gluten free diet and take probiotics.

I am a bit unsure that is all there needs to be done. I did not even know what NCGI was. Should I go to a gastroentologist based on this or just follow this advice? I am worried the insurance company will say I am being a hypochondriac of sorts and going on loads of doctor visits. My husband seems to think it is no big deal and I should just go gluten free.

Any thoughts?

Expand Quote  

Are you sure you typed the ranges correctly?  I would be surprised if the TTG tests had two different ranges.  I am not a doctor, but that seems odd.  

If the ranges are correct, then a GI visit would be recommended.  

[amelt]

  On 8/3/2017 at 4:11 AM, cyclinglady said:

Are you sure you typed the ranges correctly?  I would be surprised if the TTG tests had two different ranges.  I am not a doctor, but that seems odd.  

If the ranges are correct, then a GI visit would be recommended.  

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Hi, yes, I double checked after I read your post (I do indeed make typos once in a while) and I copied it as written on my report. Although I just went to the website of the hospital who ran the test for my endo and it all the ranges match up except for this for which I am sure there must be a reason?

Coeliac Disease

Anti-Tissue Transglutaminase IgG

Serum (Yellow or Red top) or  Plasma (EDTA, Citrate or Heparin)

Ratio:  < 1.0 - Negative 1.0-2.0 - Weak Positive 2.0-5.0 - Positive ≥ 5.0 - High Positive

[cyclinglady]

Okay, so you have a TTG IgG result of 20 when anything over a 5 is considered a positive?  Where did the 0 to 10 range come from?  You have to use the ranges that the lab provides with the test result , not from another lab.  Lab ranges can vary.  Maybe I am not getting this.....☹️

[amelt]

  On 8/3/2017 at 6:23 AM, cyclinglady said:

Okay, so you have a TTG IgG result of 20 when anything over a 5 is considered a positive?  Where did the 0 to 10 range come from?  You have to use the ranges that the lab provides with the test result , not from another lab.  Lab ranges can vary.  Maybe I am not getting this.....☹️

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The report that my results came from came from a hospital that runs the test. On the printed report it said reference 0-10 is normal range. However, the website from the department from the same hospital says anything above a 5 is positive. Regardless, I guess it is best to just stick to the reference on my report.

[squirmingitch]

Yes, I would say the reference on the report is what one would go by.