Test Results - Advice

[mom23boys10]

Some quick background information. About a year ago I was extremely fatigued, start having heart palpitations and panic attacks. I went to the Drs and he ran a bunch of tests. I was diagnosed with Hashimotos, hypothyroidism, and PVCs (benign). I had a lot of other issues but that is what drove me to the Dr. I also had some test come back for parietal antibodies and antibodies related to Primary biliary cholangitis. I referred to a GI Dr. Further test and my B12 is normal, and all my liver test were also normal. He also tested for celiacs due to IBS symptoms. That was the first time I had even thought of the possibility of celiacs. I have always had digestion issues but just dealt with them. He tested the Immunoglobulin A result 389 range: 61-348 and TTG IGA which was negative. So no celiacs. I sought a 2nd opinion for the Primary Billary Cholangitis since that seemed pretty serious. This took almost a year. She did more extensive testing. Including Ferritin and more extensive liver testing. My Ferritin was elevated and my GGT was elevated. In the follow-up to go over these results she said my Iron needed to be tested and since I still had some IBS symptoms test for celiacs again. She also recommended I stop Dairy to see if that helps. My iron came back normal but I have the gene for hemochromatosis. She tested TTG IGA which was negative again and TTG IGG result 7 range <6. A very slight positive. I do not have a follow-up until May. She said she would call if anything was significant in the results. Not sure if this is significant enough for her to call. So finally my question. Is this significant? Should I pursue more testing? I have symptoms that could be linked to celiacs but they could also be linked to a million other things including my thyroid. Thank you for reading this. I know it is long. 

[GFinDC]

Hi,

A slight positive is not a negative.  Did they give you the reference ranges with your test results?

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Usually the full celiac panel will have

Anti-endomesial (EMA) IgA

DGP IgA

DGP IgG

Total serum IgA (to determine if you actually make normal levels of Iga).

You need to keep eating gluten until all testing is completed, or the test results won't be relevant.

Welcome to the forum! :)

[cyclinglady]

I am with GFinDC.  I have Hashi's (very strong link to CD).   I had no intestinal issues when I was diagnosed (went for routine colonoscopy because I am in the "over 50 club").  Luckily, my GI ordered a complete celiac panel.  I tested negative to the popular, but cost effective, TTG tests -- just a single positive on the DGP IgA.  Biopsies revealed a Marsh Stage IIIB (my GI scoped me from both ends).  Even in follow-up testing I continue to test positive only to the DGP when exposed to gluten.  Consider asking for the entire celiac panel.  I would!  

Did I mention that I had a non-functioning gallbladder?  It was removed a few years prior to my CD diagnosis.  Get the CD panel.  You might save your gallbladder with a CD diagnosis and GF diet.    Remember, CD can effect so many organs.  I can tell you that by going GF, my thyroid stopped swinging wildly from hypo to hyper which makes me think that had I been gluten free years ago, I might still have my gallbladder.  

Remember, some 10% of celiacs will test negative on the celiac blood tests.  So, an endoscopy might be prudent.  

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[TexasJen]

It seems very reasonable to get the rest of the celiac workup since one of the tests was technically positive. However, hemochromatosis causes a lot of the same symptoms if you are heterozygous (both genes are positive). Do you know if you are heterozygous or homozygous?  This would be very important to get treatment for if both genes are positive. Does anyone in your family have either celiac or hemochromatosis?

Finally, my 4th grade teacher taught me that there is never a dumb question. If you have more questions for your GI doctor and think she may be missing something, call and make an appointment. Make a list of questions and ask her.  It never hurts to ask!

[mom23boys10]

GFinDC - Thank you for your repsonse. The Range for the Transglutaminase Ab IGA was <4 and mine was 1 So Negative, the Transglutaminase Ab IGG Range was <6 and my result was 7. So positive. 

Texas Jen - Thank you for your response. The hemochromatosis gene I tested positive for was homozygous h63d - two copies. One on each chromosome. From what I understand, since my Iron levels are currently normal is that it is something that will need to be checked regularly but I do not have it yet. This is just from what the lab posted in the comments section of the results. Nobody that I know of has either celiacs or hemochromatosis. I don't know very much information about my Father's side. His family was very anti-medicine. None of his brothers lived past 60. My sister is also very anti-doctor and has said eliminating gluten changed her life but no official diagnosis. 

I will contact my Dr. if I don't hear anything from them in the next couple of days. I have no desire not to eat gluten unless I really do have celiacs. So I don't plan on stopping. I also know the importance of getting an actual diagnosis. This past year it just seems I am at the Drs all the time and yet still no real answers. I know these things take time. Thanks again for the responses. 

 

[cyclinglady]

Because you are not IgA deficient, I would still recommend asking for the EMA and DGP (IgA versions).  An elevated TTG IgG is odd and many doctors will sadly dismiss it.  In theory, any positive necessitates further investigation (e.g. Complete blood panel or biopsy), that doesn't always happen.  

I wish you well!  

[Jmg]

On 2/7/2017 at 4:37 PM, mom23boys10 said:

I have no desire not to eat gluten unless I really do have celiacs.

I completely understand, but even so I suggest that in the event of a negative celiac diagnosis you at least trial the gluten-free diet. You may be one of those people that test negative but still react to gluten. For me for example eliminating gluten stopped the palpitations, thyroid issues, anxiety etc. If only my hair had grown back too...

If it's the source of your issues but you don't fit the standard celiac profile then the only way you'll find out is to trial the diet once celiac diagnosis is complete. You may find that the results are sufficient for you to make those changes to your diet regardless of the support of a definitive diagnosis. For myself, the recovery was so marked that the desire to eat gluten (which I loved in its many, many forms) disappeared very quickly.

Best of luck

 

[mom23boys10]

Thank you everyone for replying. I appreciate it. I will contact my Dr. next week to ask for a full celiac panel. We are currently in the middle of a snowstorm and the whole state is shut down. 

3 hours ago, Jmg said:

I completely understand, but even so I suggest that in the event of a negative celiac diagnosis you at least trial the gluten-free diet. You may be one of those people that test negative but still react to gluten. For me for example eliminating gluten stopped the palpitations, thyroid issues, anxiety etc. If only my hair had grown back too...

If it's the source of your issues but you don't fit the standard celiac profile then the only way you'll find out is to trial the diet once celiac diagnosis is complete. You may find that the results are sufficient for you to make those changes to your diet regardless of the support of a definitive diagnosis. For myself, the recovery was so marked that the desire to eat gluten (which I loved in its many, many forms) disappeared very quickly.

Best of luck

 

 

This is interesting. I always attributed my symptoms to my thyroid meds needing to be adjusted. I too have palpitations, digestive issues and joint pain. I haven't really lost any hair other than on my legs and that isn't a bad thing.  :-)

 

[Jmg]

1 hour ago, mom23boys10 said:

This is interesting. I always attributed my symptoms to my thyroid meds needing to be adjusted. I too have palpitations, digestive issues and joint pain. I haven't really lost any hair other than on my legs and that isn't a bad thing.  :-)

 

I'm happy with my hairy legs :P 

There are others here who are better placed to tell you just how gluten can interact with thyroid etc. I'd spent years not really understanding why I got so cold that I habitually wore two pairs of socks etc. Likewise with the palpitations and chest pains I had numerous ecg's, wore trace monitors and had a echocardiogram to check heart function, thought I had rheumatoid arthritis developing in my hands etc  etc.

I actually removed gluten however for entirely unrelated reasons. It was only as I progressed on the diet that I realised that not only were the neuro symptoms abating that a lot of other things I'd been beginning to think of as 'normal' were also resolving. The body is a big interconnected system and gluten seems to be able to disrupt it in all kinds of ways:

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[TexasJen]

This is very anecdotal, but before I was diagnosed celiac, a good friend of mine was trying to get pregnant. She had a very mild case of Hashimoto's thyroiditis but didn't really want to take any meds for it. She went on a gluten free diet and her Hashimoto's resolved. She subsequently got pregnant and has never had trouble with her thyroid again despite reintroducing gluten into her diet. But, I have always wondered what the connection to gluten and other AI diseases were since then. 

On a separate note, I think that when you test positive for the genes for hemochromatosis, you have the disease. There are a lot of subtle symptoms of hemochromatosis (kind of like celiac) before you get extreme iron overload that requires treatment (phlebotomy or chelation) and there aren't a lot of treatments early on in the course of the disease. I'm wondering if there is a support group for hemochromatosis like this one for celiac?