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Complex Celiac

Ttg slowly rising, occult blood in stool, doctors ignoring?

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I am so frustrated right now!! I have a stool test with occult blood - with celiac, a family history of stomach cancer and polyps, and a red meat based diet - also a risk factor for colon cancer. My allergist looks at it and says it's essential my GI repeat the test, this time avoiding red meat before in case it's a false positive. Of course, if it's a real positive, a colonoscopy is needed. I fax my results to my GI, a week later, I get a voice message "he says there's no need to repeat the test." Also, apparently no need for a colonoscopy either. 

My ttg continues to slowly increase too. We are now so meticulously gluten free that we all even shower first thing when coming home in case we have somehow picked up gluten that's getting transferred to the food. Every product - including shampoos, soap, toothpaste, cleaners, paper towels (the glue to the roll would be the issue), every little thing - is verified as gluten-free. I eat zero processed food - one BBQ sauce that is verified gluten-free both by the manufacturer and running our own test to 5 PPM. So it can't be gluten, I'm quite sure. But it's climbed from 2.8 to 7.5 slowly. Any ideas??? To me, it's most likely a second autoimmune disease, but I've had basic autoimmune tests done, and good luck convincing any doctor I need more. LOL

 
I should also add - I haven't eaten a meal outside of my home for over a year, so that can't be it. 

Help!!! I'm open to ideas!!

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I'd love to, but there's a 9-12 month where I live to see a different GI as a new patient, which is kind of prohibitive of getting the care when it's needed. Apparently, I can do this test through a GP, if I can find one who will do it. 

 

But the ttg thing....any ideas? Anyone? Please? :)

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9 minutes ago, Complex Celiac said:

I'd love to, but there's a 9-12 month where I live to see a different GI as a new patient, which is kind of prohibitive of getting the care when it's needed. Apparently, I can do this test through a GP, if I can find one who will do it. 

 

But the ttg thing....any ideas? Anyone? Please? :)

In the absence of gluten in your diet, rising tTg is most likely due to another autoimmune disease, as you already mentioned.  It is sometimes hard to test for them because they can behave like Celiac......they can show negative on a test, even if you have symptoms.  You should be tested for Sjogren's Syndrome, Type 1 diabetes, liver disease, Hashi's thyroid disease.......these are a few others that occur frequently with Celiac.  I know finding a doc who can help is sometimes harder to do than treating a disease!

I would agree that having another stool test done is important because if you ate red meat within 3-4 days of having the test done, it can result in a false positive.  Then, you can see if a colonoscopy is needed.  Or, with your family history, you could harass your GI doc for a colonoscopy until he agrees to do one. It is unusual for them NOT to want to do one if you have a positive on the stool test. In the US, you do not need a referral  to a GI for a colonoscopy.  You can go to any clinic and have one, if medically needed.  If you live in the US, that is an option for you.

BTW...the glue in paper products is not a problem with Celiac Disease. There is no gluten in paper glue.  That is an old Celiac myth.  I applaud the lengths you have gone to be really gluten free but that is a non-issue.

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I'm currently living in Ontario, Canada, the Greater Toronto Area. Getting a colonoscopy is far more difficult than in the U.S. I'm quite familiar with both systems, both countries have good and bad in health care, but the big flaw here is you can't do anything without referrals. You need a referral from a GP for a specialist - and then a referral from specialists for tests. The system may work if you have a great GP who has known you for years and there's a two way trust, for the rest of us, it isn't so great. Thankfully, naturopaths have a lot of power here. Without tests through my ND, I'd be in serious trouble - even more so!

 

Totally agree on the autoimmune testing! But my GI doesn't. Next step is to contact the naturopath and see what she can do. I agree, other than something else autoimmune, what can it be?

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14 hours ago, Complex Celiac said:

I'm currently living in Ontario, Canada, the Greater Toronto Area. Getting a colonoscopy is far more difficult than in the U.S. I'm quite familiar with both systems, both countries have good and bad in health care, but the big flaw here is you can't do anything without referrals. You need a referral from a GP for a specialist - and then a referral from specialists for tests. The system may work if you have a great GP who has known you for years and there's a two way trust, for the rest of us, it isn't so great. Thankfully, naturopaths have a lot of power here. Without tests through my ND, I'd be in serious trouble - even more so!

 

Totally agree on the autoimmune testing! But my GI doesn't. Next step is to contact the naturopath and see what she can do. I agree, other than something else autoimmune, what can it be?

Oh, I totally understand both systems also and I agree that depending on the problem, it can either be easy or a nightmare to obtain what you need.  Some health care plans here in the States depend heavily on referrals and it really is a PITA!  But, really......the GI doesn't think you need a colonoscopy after a positive stool test with your family history?  I would agree that you need to use whatever medical people you can get help from.  I use a private MD  here for my thyroid because I could not find an insurance backed doc who was willing to think outside the box as far as treatment was concerned. My thyroid would not be stable now if I went through the mainstream system.

Can you obtain a referral to a rheumatologist?  They generally know the testing for other AI conditions.  It's usually all blood work.

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9 hours ago, Gemini said:

Oh, I totally understand both systems also and I agree that depending on the problem, it can either be easy or a nightmare to obtain what you need.  Some health care plans here in the States depend heavily on referrals and it really is a PITA!  But, really......the GI doesn't think you need a colonoscopy after a positive stool test with your family history?  I would agree that you need to use whatever medical people you can get help from.  I use a private MD  here for my thyroid because I could not find an insurance backed doc who was willing to think outside the box as far as treatment was concerned. My thyroid would not be stable now if I went through the mainstream system.

Can you obtain a referral to a rheumatologist?  They generally know the testing for other AI conditions.  It's usually all blood work.

I will try for a referral. I saw a rheumatologist a year or so ago, but they did absolutely no blood work. I'd make sure I got it done this time! If not, I will see if I can order through my ND. I'd have to pay a lot more I suspect, but it's worth it!!

Yeah, in Ontario, there's no options outside of the system for MDs. No ability to see a specislist and pay if your GP doesn't agree you need a specialist. Quebec is different. They allow you to pay and see doctors outside of the system. When they did that, they went from the worst wait times in the country to the best!

Yeah, a colonoscopy probably makes sense, but we will see....

 

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