My Local Labs Only Run Ttg Iga - What Do I Do Now?

[SiandAshs Mom]

So I asked my doctor for celiac blood tests a few months ago. He sent me for total IgA (1.32 g/L {ref 0.70-4.00}) and the tTG IgA (<1.0 U/mL {ref <7.0}). My total IgA is normal and my tTG IgA is a big fat negative. I then found out that they only run the EMA if there is an elevated tTG IgA so they didn't run that on me. The lab doesn't even do the gliadin tests or the DGP test.

I am almost certain I have an issue with gluten (life long GI issues which previous doc diagnosed as IBS, iron deficiency, depression, fatigue...) and would love to explore all angles so I can care for my kids' health properly. I recently was reading my full bloodwork results and realized that my TSH is high (3.19 mU/L). It wasn't flagged as the labs have a range of 0.20-4.00 but I believe that is high for me. I am going back to my doc next week to have my free T3's, free T4's and antibodies checked. I'm thinking it may be Hashimotos but we'll see. 

I really feel more exploration into celiac is warranted but am not sure how to proceed now. Is there another way to have the gliadin and DGP blood tests run since my local labs won't do it (I'm in Alberta, Canada)? Should I just push for an endoscopy? I appreciate your thoughts! Thanks!

 

ETA: I found this presentation that my lab put out about lab testing for celiac. I find it interesting that the only reason they give for not having the DGP test is that it's expensive :facepalm: 

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[nvsmom]

Yeah... I'm in Alberta too and couldn't get any more testing either. You might be able to find a mail order lab and have a local lab draw the blood and send it off East or to the States, but I bet it costs a pretty penny.

 

I strongly suspect celiac disease in two of my three boys. They too had negative tTG IgA tests so with no other testing options, I just made them gluten-free. I'm a celiac so I wouldn't be surprised if they are too, but at the very least they are NCGI (non-celiac gluten intolerant) which can result in a host of symptoms and complications if ignored - pretty much the same as celiac disease but minus the villi atrophy.

 

I opted not to do the endoscopy for my kids because I had already determined that they had a gluten intolerance and needed to be gluten-free, so I didn't feel an endoscopy was needed. But that's just my personal view of our own situation. If you feel strongly that an endoscopy should be done, then it should be done. Just be aware that if it is negative, you could still have NCGI as it is 6-10 times more common that celiac disease is. A gluten-free diet of about 6 months is really the only way to diagnose that.

 

Going gluten-free could help your thyroid too. Some find their body meets their thyroid hormone needs better after going gluten-free.  You never know.  

 

Based on my own experiences, you may need to find an "alternative" doctor or naturopath to address your thyroid needs if the lab results continue to be in the normal range. In Calgary, our TSH range is still 0.2-6.0 and I had to fight to get more meds and finally switched doctors.  I hope your doctor is open minded.  Good luck!

[SiandAshs Mom]

Yeah... I'm in Alberta too and couldn't get any more testing either. You might be able to find a mail order lab and have a local lab draw the blood and send it off East or to the States, but I bet it costs a pretty penny.

 

I strongly suspect celiac disease in two of my three boys. They too had negative tTG IgA tests so with no other testing options, I just made them gluten-free. I'm a celiac so I wouldn't be surprised if they are too, but at the very least they are NCGI (non-celiac gluten intolerant) which can result in a host of symptoms and complications if ignored - pretty much the same as celiac disease but minus the villi atrophy.

 

I opted not to do the endoscopy for my kids because I had already determined that they had a gluten intolerance and needed to be gluten-free, so I didn't feel an endoscopy was needed. But that's just my personal view of our own situation. If you feel strongly that an endoscopy should be done, then it should be done. Just be aware that if it is negative, you could still have NCGI as it is 6-10 times more common that celiac disease is. A gluten-free diet of about 6 months is really the only way to diagnose that.

 

Going gluten-free could help your thyroid too. Some find their body meets their thyroid hormone needs better after going gluten-free.  You never know.  

 

Based on my own experiences, you may need to find an "alternative" doctor or naturopath to address your thyroid needs if the lab results continue to be in the normal range. In Calgary, our TSH range is still 0.2-6.0 and I had to fight to get more meds and finally switched doctors.  I hope your doctor is open minded.  Good luck!

Thanks nvsmom. You've given me great feedback in other questions I've posted as well. Yeah, I would be fine just cutting out gluten from my diet completely but the fact that a diagnosis may benefit my kids keeps me from just accepting that. I just ordered the genesure genetic test from glutenpro and even though it wasn't cheap it will maybe help me figure out if I need to push for more testing or if I just need to start the gluten-free diet in earnest (I've done a week or two before but always stopped as I thought I may want more testing). I know the gene test won't tell me if I'm celiac but it will let me know if it's even a possibility. And thanks for the tip on finding a naturopath for thyroid issues. We do have a really good naturopath clinic here so I may end up seeing them if my doctor doesn't think there's any issues. Wow, a range of up to 6.0 is just crazy! There are probably so many people suffering but the lab still says they're fine. So sad! 

[nvsmom]

Good luck with the gensure test.  

 

What are you thinking for more testing at this time? I'm not sure if the DGP tests are even available in Alberta. At my last doctor appointment, I discovered that my doctor had never even heard of the DGP tests.   I know labs can be sent away, because I know one man who had his blood work sent to the Mayo clinic - but this was a different health issue where blood test monitoring is required, and not just helpful like in celiac disease.

 

Naturopaths are often more open to giving T3 than regular docs are. I have actually found a protocol for Calgary (might be Alberta) that says to only give synthetic T4 and that T3 is not needed; it also strongly advises against natural desiccated thyroid... Truly a shame as not everybody feels well on exactly the same meds; it allows for no variation.

 

Sometimes our Alberta Health Care is a blessing, and other times I REALLY wish we could have more control of our health. 

[SiandAshs Mom]

Good luck with the gensure test.  

 

What are you thinking for more testing at this time? I'm not sure if the DGP tests are even available in Alberta. At my last doctor appointment, I discovered that my doctor had never even heard of the DGP tests.   I know labs can be sent away, because I know one man who had his blood work sent to the Mayo clinic - but this was a different health issue where blood test monitoring is required, and not just helpful like in celiac disease.

 

Naturopaths are often more open to giving T3 than regular docs are. I have actually found a protocol for Calgary (might be Alberta) that says to only give synthetic T4 and that T3 is not needed; it also strongly advises against natural desiccated thyroid... Truly a shame as not everybody feels well on exactly the same meds; it allows for no variation.

 

Sometimes our Alberta Health Care is a blessing, and other times I REALLY wish we could have more control of our health. 

I actually have no idea what testing to do. There really isn't much else here other than the biopsy... my doctor suggested a colonoscopy and I thought that he may send me for an endoscopy as well but I'm not sure he would agree to that - and I'm not sure if it's necessary since the tTG IgA was completely negative.

I know the naturopath here does IgG testing so I could pay for the IgG gliadin test. I've heard conflicting info on its usefulness though. Some seem to think it indicates gluten sensitivity and others think it has no meaning at all so I'm not sure it's worth paying for. Thoughts on that? I guess I will probably see the naturopath for thyroid issues anyway so I can ask her then. I really don't understand why some medical professionals are against T3 and natural thyroid. Does it really make sense medically to only treat with T4 meds? It doesn't make rational sense to me   Thanks again for your input!

[nvsmom]

The gliadin tests (AGA) don't test for attempted villi damage by autoantibodies like the other tests do, it's thought to work for NGI too but that is not widely accepted yet.  It DOES have a fairly low sensitivity (ability to detect positives) so it's best not to solely rely on it for a diagnosis.

 

I can't remember if I've pointed out this paper (by world gastroenterology organisation) to you yet. On page 10-12 they go through the tests andpoint out how sensitive and specific to celiac disease each test is. All tests discussed are blood tests; fecal testing can be done but they are not generally accepted in the medical community and tend to have a high (false) positive rate.

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I don't understand why t3 is down upon either!  I "get" that T4 converts to T3 in parts of our body that need it, but not everyone converts well, or accepts t4 to be converted.... Nope. Not rational. I totally agree that a T3 option should be given to those who need it (and not all do - I just know that i did).

 

Let us know how it goes with the naturopath.