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nobeer4me

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nobeer4me Apprentice
nobeer4me
Posted

Hi folks,

I was recentley tested for Celiac disease by a blood test. My doctor said that out of six catagories, I tested positive in only one catagory. My doctor wants me to see a gastro doctor to make sure I have the disease.

Since then, (about a month now) I have been on a gluten free diet, and my symptoms have been noticeably better.

I have been struggling for about 5 years now with mouth ulcers and receeding gum line around my molars with no help until now. Its been quite horrifying!

Is there any chance that I don't have ciliac disease, maybe just alergic to wheat and not gluten ect? Just qurious what you all think.

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Emme999 Enthusiast
Emme999
Posted

Hello. :) Welcome to the forum :)

Okay, need more info! ;)

What blood test did you have? I'm guessing that since your doctor wants you to see a gastro to confirm the diagnosis, it was a pretty important one! tTG perhaps? If that test came back positive, it's 95-100% accurate that you have celiac disease.

Also, I think it's pretty crucial that you not start the gluten free diet until *after* you see the gastroenterologist. That's really important, because being on the gluten free diet can alter any tests you have done in the future - especially the endoscopy that is usually done by the gastroenterologist.

What other symptoms do you have? Besides the gingival stuff?

I'm sorry you are going through a rough time :(

Sorry that I don't know what the six categories that your doctor is talking about are - but someone else here probably will ;)

Hang in there! You've got a huge panel of wonderful people here who have lived with celiac for a long time - someone is bound to be able to give you some good advice ;)

- Michelle :wub:

KaitiUSA Enthusiast
KaitiUSA
Posted

You should not go gluten free before all testing is completed. This will make tests come back with inaccurate results.

Which of the 6 tests came back negative? There are 2 tests...EMA and tTG...if one of these 2 tests came back positive then you have it. These are very specific tests for celiac.

Has the diet been helpful in eliminating your symptoms?

Welcome to the board! :D

nobeer4me Apprentice
nobeer4me
Posted
  • Author

Thanks for the replys everyone. I guess I'll have to contact my doctor to find out

exactly which catagory I tested positive in . I remember one was a B deficiantcy, which was ok. My doctor did say " looked like I had it, but not 100% sure, should see a gastro doctor to be sure."

My dentist is a celiac, and is what led me to get tested.

I actually changed my diet a week before my blood test. Its been a little over a month now. and YES! there has been a change. Ulcers ect. have stopped.

I almost hate to think of starting a gluten diet again in order to be tested.

I don't want to deal with the discomfort, and painful eating experience again.

Mike.

Guest nini
Guest nini
Posted

I've been hearing quite a lot of people say that the positive response to the dietary change is enough of an answer to be a positive diagnosis of at the very least a gluten intolerance. When you talk to your doctor, in regards to any testing, make sure they take into consideration your improved health on the gluten free diet.

nobeer4me Apprentice
nobeer4me
Posted
  • Author

Thanks again folks.

This is certainly a mysterious disease. It seems to affect people in different ways too. I have never had any chronic stomach or intestinal problems to speak of.

I used to have heartburn off an on, and I remember as a kid having bad stomach cramps that would come and go. Other than that a pretty much normal life until the mouth ulcers.

Adding it all up, I'm thinking I have Ciliac disease.

A bread lover I am. no more pies cakes, danishes with my coffee, or beer with my bar B Q... BOO HOO!!!

tarnalberry Community Regular
tarnalberry
Posted

I understand you're hesitation on reintroducing gluten - particularly for the length of time necessary for the tests. Some doctors - though not too many - may accept positive results on the diet as being evidence enough. The only thing that really matters, though, is whether YOU think it's evidence enough, because you're the one who makes the dietary changes.

Hopefully the additional information your doctor gives you will help you figure out the best path for you!

(And you can have cakes and pies - just make the gluten-free! ;-) My FIL loves my low-fat, dairy-free, gluten-free pumpkin pie, so I know it can be done. ;-) )

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