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Some Help Please...

OntarioJoe

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OntarioJoe Newbie
OntarioJoe
Posted

So, after 3 days of ALMOST no gluten I decided I want to get tested to find out for sure if that is really what is wrong with me.

I understand that one needs to be eating "normally" including gluten for the test to work correctly, so I ate what I would "normally" eat last night, almost imediately I had bad gas and a little while later had diarreah, then again this morning had diarrea.

The 3 days prior when I was having very little gluten I was fine, I am wondering if getting the test done is worth putting myself through this.

I am finding this very difficult to deal with.

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kareng Grand Master
kareng
Posted

You should be able to get the blood test pretty quickly. Unless you have to fight with your doctor to get it ordered.

You can always go gluten-free with no test because you know you feel better.

Good luck & Welcome!

OntarioJoe Newbie
OntarioJoe
Posted
  • Author

thanks...I have the blood tests tomorrow, the Dr. told me that there is not just a specific test to find out if you have Celiac, is this true???

He is sending me for a bunch of bloodwork tomorrow and an upper GI on May 17th, do you think i need to continue eating gluten until may 17th or does that not have anything to do with an upper GI.

Thanks again.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Yes I agree with Karen. You have not been gluten lite for very long so I don't think you need a 3-month gluten challenge. With only 3 days "almost gluten-free" you will not have healed enough to get rid of any damage anyway. Get into see your dr. You should be able to get the blood tests done immediately on the same day as your appointment.

kareng Grand Master
kareng
Posted

Joe, I think you should eat gluten until the endoscopy. Make sure they take many biopsies of the small intestine. I'm going to look for some info you can print & take with you. Back in a few minutes!

kareng Grand Master
kareng
Posted

Ok. I'm back. Print this off. Highlight the names of the blood tests. It's from an actual medical center and actual docs so my doctors have read it. Make sure he doesn't just write "celiac panel". Ask him to specify because some Celiac panels are out of date. Keep a copy with you. When you are getting the blood drawn, make sure those are what they are sending the blood in for.

Open Original Shared Link

Another good site:

Open Original Shared Link

OntarioJoe Newbie
OntarioJoe
Posted
  • Author

Joe, I think you should eat gluten until the endoscopy. Make sure they take many biopsies of the small intestine. I'm going to look for some info you can print & take with you. Back in a few minutes!

thank you so much...is the upper GI the same as an endoscopy?

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kareng Grand Master
kareng
Posted

thank you so much...is the upper GI the same as an endoscopy?

Make sure it isn't just the esophagus & stomach. Ask the doctor. You could probably call & ask the office if that is what you are scheduled for. When you get there, they will ask if you know why you are there, any questions, etc. Make sure you are getting what you think you are.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

thanks...I have the blood tests tomorrow, the Dr. told me that there is not just a specific test to find out if you have Celiac, is this true???

He is sending me for a bunch of bloodwork tomorrow and an upper GI on May 17th, do you think i need to continue eating gluten until may 17th or does that not have anything to do with an upper GI.

Thanks again.

Yes, do keep eating gluten until May 17th if you can handle it. I'm not sure what your dr meant when he said that about their not being specific tests...there are specific tests (Kareng posted links above), HOWEVER the tests cannot rule out celiac. They are designed so that if they come back positive it's very, very, very accurate. If it comes back negative it could be a false negative. In other words you can have a negative test resutl and still have celiac. so perhaps that is what your dr meant abotu them not being specific. Be sure to eat gluten until all your testing is done because not eating gluten can cause your test results to be false negative.

OntarioJoe Newbie
OntarioJoe
Posted
  • Author

Yes, do keep eating gluten until May 17th if you can handle it. I'm not sure what your dr meant when he said that about their not being specific tests...there are specific tests (Kareng posted links above), HOWEVER the tests cannot rule out celiac. They are designed so that if they come back positive it's very, very, very accurate. If it comes back negative it could be a false negative. In other words you can have a negative test resutl and still have celiac. so perhaps that is what your dr meant abotu them not being specific. Be sure to eat gluten until all your testing is done because not eating gluten can cause your test results to be false negative.

ok, I will print those off and bring them to the Dr.'s with me, I can't thank you enough.

kareng Grand Master
kareng
Posted

ok, I will print those off and bring them to the Dr.'s with me, I can't thank you enough.

I cannot emphasize enough that you should highlight the actual tests. Docs will read about 2 sentences and they are used to someone highlighting the important parts or where to sign.

ravenwoodglass Mentor
ravenwoodglass
Posted

As painful as it might be you really need to keep eating gluten until the endo is done. As was stated there are false negatives with testing. Do listen to your body and go gluten free as soon as the testing is finished you don't need to wait on the results. Your body is really giving you the answer and do keep in mind that once you are 'officially diagnosed' you will have celiac as a preexisting condition. Some have had trouble getting insurance with a formal diagnosis. Not saying for sure that you will have to deal with that issue but something you should be aware of. We don't need a doctors permission to be gluten free but having a diagnosis can help get doctors to order tests like vitamin and mineral panels and scans to check for osteoporosis.

OntarioJoe Newbie
OntarioJoe
Posted
  • Author

ok, I assume getting an endoscopy at the same time as an upper GI would be my best bet.

I live in Canada, and therefore don't pay for medical visits, do you think I can tell the doctor what I want done?, all he is sending me for is the upper GI, I will tell him that I want the endoscopy, does he have to listen?

ravenwoodglass Mentor
ravenwoodglass
Posted

ok, I assume getting an endoscopy at the same time as an upper GI would be my best bet.

I live in Canada, and therefore don't pay for medical visits, do you think I can tell the doctor what I want done?, all he is sending me for is the upper GI, I will tell him that I want the endoscopy, does he have to listen?

Explain to the doctor what your issues have been and tell him that you did a short trial of the diet and that it relieved your symptoms. Tell him that you are aware that to be tested for celiac you need to still be on gluten and tell him how awful you felt when you added it back in. Then tell him you want to be tested for celiac. It depends on the doctor whether he will listen or not. Being in Canada, from what I have heard here on the board, it can take awhile to get scheduled for an endo. It is up to you whether you want to wait for the test to be done or if you just want to go ahead and go gluten free without the endo after the bloodwork is done.

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    • trents
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      By trents · Posted

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      By Ello · Posted

      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
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      By trents · Posted

      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
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      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
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