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Do You See Your Gi Regularly?


luvs2eat

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luvs2eat Collaborator

I read about everyone's doctors... and wonder if I should be seeing my GI on a regular basis. To be honest, I saw him exactly twice... once to be examined and schedule my blood work and again to have my colonoscopy. He told me then that he had good news and bad news.

The good news was that he knew what was causing my unrelenting diarrhea... the bad news was that I couldn't eat gluten anymore. This was from my blood work alone.

As a (former) nurse and one who's cooked my whole life (I was 49 at the time), I was able to find good food lists... I went gluten-free that day and wasn't often accidentally "glutenized." As I saw steady improvement (I've mentioned before that it took almost a year for my bowels to get back to what I considered normal) I've not found it necessary to go back.

I've been gluten-free for several years and I'd be hardpressed to submit to a gluten challenge to have an endoscopy. Is there a reason to keep seeing the GI doc?

OR... is seeing the rheumatologist once a year okay? About a year after going gluten-free, my blood work showed a high ANA titre... so I had to have almost all my blood removed to rule out Lupus. I see the rheumatologist once a year to repeat this bloodletting and have no Lupus symptoms or elevated anything in my blood. Of course we talk about celiac disease in our discussion of autoimmune stuff.

What would you do if you were me?


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Merika Contributor

I don't know what you should do. But I don't see a GI either, and I feel fine with that decision. I do see my acupuncturist regularly, and she helps with the celiac symptoms.

What would a gi do with you? Once they tell you you have celiac, that's sorta it right? And, recent research shows the blood test to be every bit as good, or better, than an endoscopy.

Merika

mytummyhurts Contributor

Wow! What's that deal with the lupus test? They think I may have lupus or something else as I have high ANA too, but I have actually had two flare ups of symptoms. They have never mentioned the blood thing though.

I don't have any current plans to go back to my GI. I've thought about having the blood test run again to see if I'm truly gluten-free, but I don't think the GI would have to do that. I wouldn't want to do the gluten challenge either. Especially because symptoms are usually worse when you go back on gluten.

cdford Contributor

I did not see my GI but about once a year until I got significantly glutened last year. After that, I have seen her regularly to follow up on some on-going problems related to the celiac disease. Hopefully I will get back to the once or twice a year follow up again one of these days. I would not worry about it unless I had specific GI symptoms that needed follow up, especially if your primary care doc is reasonably knowledgeable and accepts celiac disease as an issue.

cmom Contributor

I only see my GI every 3 years. I have the blood test to check my levels and a small bowel with follow through x-ray to make sure there are no cancer cells. However, this was BEFORE I found out that the barium I have to drink is not gluten-free! The last time I got very very sick on the way home. I will have to discuss this with him next time.

luvs2eat Collaborator

Sorry, mytummyhurts... I was trying to be funny about the Lupus blood tests. The rheumatologist ordered this whole battery of tests and it took 9 vials of blood to do them all. The guy sitting across from me asked if they were gonna leave me any blood??? haha

He tested everything blood might tell him and examined me, asking questions about every single system to determine that my only symptom was the slightly elevated ANA.

His explanation of an autoimmune disorder was great! He told me my body was like a country (I asked him if that was some kind of FAT joke??? ha) and my immune system was my army, poised to fight off any invader (disease). But sometimes when there were no diseases to fight, the army got restless and began fighting amongst themselves... and this internal fighting is an autoimmune disorder.

Anyhow, I see him now once a year, he asks me 1,000 questions, I say "no" to every one (cross fingers it's always that way!) and I'm on my way!

Thanks for the input on visiting your GI everyone!

bremac Apprentice

I haven't been back to mine in almost 2 years. I was actually just wondering today if I should go see him again before I start med school just to make sure my antibodies are low and everything. I had a physical with my primary doc a month ago though, and I'm not anemic (which is what happens when I get glutened a lot). Plus, I donate blood every 4 months or so and they check for anemia too, hehe. :-)


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mytummyhurts Contributor
Sorry, mytummyhurts... I was trying to be funny about the Lupus blood tests. The rheumatologist ordered this whole battery of tests and it took 9 vials of blood to do them all. The guy sitting across from me asked if they were gonna leave me any blood??? haha

Okay, I get it now. :lol:

I was going to say, that sounds like a weird test!

I know what you mean though, they do have to take a lot of viles for all the tests.

I've heard that some people even just in the general populations have high ANA and half of them never develop any type of disease related to those. Unfortunately, it is likely I have one as now I have had two flare-ups and it is not fun! Obviously! They were six months apart though and if it they stay that far apart I could probably deal with it. I'm just scared of the organ damage of the more serious lupus. I still don't really understand all of the different autoimmune tissue/joint disorders.

celiac3270 Collaborator

In the beginning (right at diagnosis) it's usually recommended to go back in 3 months, then wait 6 months, then if the bloodwork is normal, a year, if not, every three months until it is.

You should visit your GI annually and have bloodwork done to make sure you're 100% gluten-free.

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    • SamAlvi
      Hi, thank you for the reply. Unfortunately, no other antibody tests were ordered. I am a 32-year-old male. About two months ago, I ate pancakes and then developed severe diarrhea that lasted the entire day. At night, I became unconscious due to fluid loss and was admitted to the ER, where I received IV fluids. Two days later, I ate bread again and once more developed severe diarrhea. I ended up in the ER again and received IV fluids. In my country, Pakistan, doctors are unfortunately not very thorough, so they treated me for a stomach infection. I visited three or four doctors, including a gastroenterologist, but it seemed like they just wanted to keep me on medications and IV fluids. Eventually, I did some digging myself and started connecting the dots. For years, I’ve had excessive gas buildup and frequent loose stools, but I never paid much attention to it. I also cannot easily digest dairy products. Two years ago, I had a CBC test that showed iron deficiency. My doctor told me to eat more meat and said it was nothing serious. However, for the past five years, I’ve also had severe motion sickness, which I never experienced before. Whenever I get on a bus or in a car, I sometimes lose consciousness for 10–20 seconds and wake up sweaty, and occasionally I feel the need to vomit. After more research on the internet, I came across gluten and celiac disease, so I got two related tests (TTG-IgA & TTG IgG) done along with a stool test and another CBC. The stool test showed weakly positive blood. Ever since eating those pancakes and bread, I’ve had a burning sensation in my gut. My doctor reviewed my tests, he told me to completely stop eating gluten and started me on IV fluids for 20 days, saying that I had severe inflammation in my gut. It has now been two months since I quit gluten, and I’m still not sure whether this is celiac disease or gluten intolerance. I don’t really trust doctors in Pakistan, so I thought I might get some help here.
    • trents
      Welcome to the celiac.com community, @SamAlvi! Were there any other antibody tests ordered? Particularly, was there a "total IGA" test ordered to check for IGA deficiency. When people are IGA deficient, celiac panel IGA test scores, such as the TTG-IGA, are likely not valid. If a total IGA test was not ordered, I would request such to be done. Note: "Total IGA" goes by other names as well. I will include a primer on celiac disease antibody testing which does a good job in covering the nomenclature variations connected with the various tests. Elevated IGG scores can certainly indicate celiac disease but they are more likely than elevated IGA tests to be caused by something else.  
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