Continuing Gluten Challenge?

[Elisa91]

Hi everyone,

 

Last May I started getting a lot of GI complaints, including bloating, nausea, heartburn, and feeling full all the time. I started losing some weight en several months later I became very exhausted and lightheaded. I went to see my GP and my vitamin b12 level was 148, which I believe is just below normal. I visited my GP several times for my GI problems, but he suggested that I was just stressed out and that all my complaints were psychological. I switched GPs two months ago and my new GP mentioned that she thought that I might have celiac disease, also because my mother and grandfather have suffered from GI problems for decades (never tested for celiac). I had a blood test, which was negative. The test was Iga ttg, total Iga was normal. I had been on and off gluten for about six weeks before that and glutenfree for the two weeks before the test. Could that have influenced the results? (My GP says it doesn't make a difference, but I am not sure...)

 

I am scheduled to have an endoscopy on the 29th of December and started to reintroduce gluten a few days ago, so I will have 14 days of eating gluten before the test. I am not sure if it is even possible to have celiac disease with negative bloodwork and if a period of 14 days of gluten will make a difference. 

 

I'm very new to this and would like to hear what you think about this? Should I continue to eat gluten before my biopsy? 

 

 

[cyclinglady]

Yes! Eating gluten free or gluten light can affect your blood tests. Not to mention that it appears that you did not get a complete celiac blood panel. I tested barely positive on just one of the tests and my biopsy showed severe damage and I was eating gluten like crazy.

Here is the complete panel:

Complete Celiac Blood Panel

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA - a control test

AGA IgA and AGA IgG - less reliable older tests

endoscopic biopsy - make sure at least 6 samples are taken

Celiac savvy doctors recommend consuming 1 to 2 slices of bread (or equivalent) for six to eight weeks for the blood test. You need less time for the biopsy, so you just might make it. Please insist on at least six biopsies. The wall of the small intestine is vast, so it is easy to miss the damage spots and are not often visible to the naked eye.

Good luck.

[Elisa91]

Yes! Eating gluten free or gluten light can affect your blood tests. Not to mention that it appears that you did not get a complete celiac blood panel. I tested barely positive on just one of the tests and my biopsy showed severe damage and I was eating gluten like crazy.

Here is the complete panel:

Complete Celiac Blood Panel

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA - a control test

AGA IgA and AGA IgG - less reliable older tests

endoscopic biopsy - make sure at least 6 samples are taken

Celiac savvy doctors recommend consuming 1 to 2 slices of bread (or equivalent) for six to eight weeks for the blood test. You need less time for the biopsy, so you just might make it. Please insist on at least six biopsies. The wall of the small intestine is vast, so it is easy to miss the damage spots and are not often visible to the naked eye.

Good luck.

 

Thank you so much for your help! It can be quite hard to get accurate information from the internet or from doctors... Even the GI doctor at the hospital told me it wouldn't matter if I'd continue to eat gluten or not. So thank you for your advice. I will continue to eat gluten and after the endoscopy I will go gluten-free again, no matter what the results will be.

[nvsmom]

Ditto Cyclinglady, that is all great information.    Keep eating gluten, and see if you can get those other tests done before going gluten-free.

 

Good luck!

[Elisa91]

Thanks for both of your answers! I had my endoscopy yesterday and six biopsies were taken, so now I'll wait for the results. I discussed the other celiac blood tests with my GP, but apparently the lab doesn't do those tests. The only way I can get them done is through a GI doctor at the teaching hospital here, but I'd have to wait two to three months for an appointment and I don't think I'm willing to stay on a 'regular' diet for that amount of time.  

[squirmingitch]

If you're in the US it sounds mighty weird about the "lab doesn't do those tests" and you would have to go to a GI doc at the teaching hospital. Doctors have access to many labs not just one so if this is the case it would seem your doc is just saying that b/c they think they know better & think the test they gave you is sufficient AND it was negative so are blowing you off with the spiel about the lab not doing those. 

[Elisa91]

Thanks for your reply! I actually live in The Netherlands and from what I've read online, I get the feeling that doctors here are way behind when it comes to celiac awareness and testing. My former GP actually said that there was no way I am celiac, even though I came to him because of GI complaints and a vitamin b12 deficiency. My current GP mentioned celiac's, but advised me to go gluten free immediately, before all testing. Plus, she told me that eating gluten-free would not affect any tests. 

I agree with you about my GP thinking I've been tested sufficiently and probably not wanting to waste anymore time on me. A lot of doctors easily assume that symptoms are being caused by stress (but even if they were, does that mean someone should not receive any help for that?). 

 

I guess I could call them one more time and ask to see another GP and/or ask if they can draw my blood there and just send it to the hospital. I was told that there is almost no chance I could be celiac with a negative tTG IgA, but I am reading a lot of stories here that prove otherwise. 

[squirmingitch]

Awww rats!!!! This is so frustrating! Bad enough that so many docs don't know what they're doing in regards to his disease but worse yet when it's another country. The upshot of it all is (I assume) you are of Dutch or Germanic heritage --- DUH! and the northern European peoples have a higher incidence of celiac disease. 

[Elisa91]

Yes, I am Dutch and I had never heard that! I agree that doctors can be very frustrating, but I think I'm relatively lucky since I've only really been sick since May this year and not years or decades like some people with celiac disease have. That's just awful.

[squirmingitch]

This excerpt from:

Open Original Shared Link

 

Roswitha Moehring says:
January 24, 2013 at 6:06 pm
Celiac disease affects primarily people of Northern European descent and is virtually absent in China and other Southeast-Asian countries and subsaharan African Blacks. To understand this distribution one has to look at the history of European nations, migration and trade. It is believed that the mutation that puts people at risk for Celiac disease/ gluten enteropathy originated in Northern Europe, probably among the Vikings, that lived in what is now Denmark and Norway. The Vikings were a seafaring people who conquered and raided the Atlantic coastal towns of France, Portugal and Spain, traded goods AND their GENOME with peoples across the Baltic sea (now Finland) and all along the Mediterranean coast including North Africa as far back as what is now Lebanon. Normandy and Brittany in the North of France are populated by the descendants of the Normans (Vikings) where people look distinctly different than in the rest of France with it’s many Roman descendants. Population surveys assessing the prevalence of genetic diseases need to read up on history in order to understand the global distribution of certain diseases.
Roswitha Moehring, M.D.
- See more at: Open Original Shared Link

 

BTW, my grandparents on my father's side immigrated from the Netherlands making me 50% Dutch & mom's side was English so I'm 100% Northern European descent. 

[Elisa91]

Thank you, very interesting! If I do get diagnosed, there sure is a lot to learn... 

 

Maybe somewhat unrelated, but I had my endoscopy two days ago and still have some stomach cramping/abdominal pain. That would seem pretty normal to me, but at the hospital they told me that the procedure should be painless (which was not true  ) and that there should be no discomfort afterwards. 

Would you think that it's normal to experience some pain/discomfort?

[squirmingitch]

I don't know. I haven't had an endoscopy so can't speak of any personal experience. 

I would think you should call them & let them know you are having pain/discomfort.