I am new to Celiac

[celiacpaula]

Hi! All this is new to me. I went for a colonoscopy.  Then my doctor said to stay on a strict gluten free diet but said nothing about Celiac.  Thanks, Celiac Paula

[trents]

Welcome to the forum, @celiacpaula!

First, a colonoscopy cannot be used to diagnose celiac disease. Celiac disease causes damage to the small bowel (the part of the intestines just below the stomach). A colonoscopy cannot reach up that far. The kind of scoping that is used for diagnosing celiac disease is called an endoscopy (aka, "upper GI"). Having said that, normally, the first stage of diagnosing celiac disease is to have some blood work done to look for antibodies that are characteristically produced by celiac disease. If the bloodwork is positive, usually there is a consult scheduled with a GI doc for the purpose of having and endoscopy with biopsy of the small bowel lining.

What symptoms are you experiencing?

If you suspect you have celiac disease or another problem with gluten then your first step would be to ask your family physician to run two celiac blood tests: total IGA and tTG-IGA. If the blood testing is positive, then you would likely need a referral to a GI doc for an endoscopy with biopsy. 

But please hear this. It is very important for you to not go on a gluten free diet until you have completed all testing for celiac disease. If you start the gluten free diet now you will sabotage the test results. 

There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity) which does not cause damage to the small bowel lining but produces many of the same symptoms as celiac disease. It is 10x more common than celiac disease but there is no test for NCGS. Celiac disease must first be ruled out.

[celiacpaula]

Yes, I  had an upper GI, also. Plus,  I had bloodwork done. I misunderstood. The doctor told me ,to go on a strict gluten free diet. He said nothing about celiac. So in other words, I have celiac? I have other autoimmune disease. My symptoms are many. I am totally confused.  You think my doctor would have wanted to  see me after my results. Thank you for explaining that to me.

[trents]

The doctor dropped the ball. I can't understand why he did not schedule for a follow-up appointment to discuss your results. But he may have elected to not use the term "celiac" because it is unfamiliar to many or most people whereas most people are aware that "gluten" causes problem for some folks for one reason or another. 

It is common for celiacs to develop other autoimmune disorders. 

But let's come at this from a different direction. Do you have access to your bloodwork test results and the upper GI scope/biopsy results? Can you access them online? If you have that information we can probably confirm a celiac diagnosis or point you in the other direction of NCGS if you can post them. If you have bloodwork numbers from the tests we would also need the reference ranges for negative vs. positive since each lab uses different reference ranges. If nothing else, I would contact your doctor and ask for a definitive answer to the question of "do I have celiac disease?"

But this might be helpful to know: Whether or not you have celiac disease or NCGS the antidote is the same. Namely, observing a strict gluten free diet for life.

Edited March 12, 2024 by trents

[celiacpaula]

Yes, I do have the results, but there's nothing to attach a file to in this page. I could email it. This would be a big help to me. Thank you

[trents]

There is a very short time window allowed for adding an attachment. This is purposeful as it helps thwart spammers. However, when you open a new post window you should see a paperclip symbol at the bottom and a message saying you can also just drag the file over. Having said that, a lot of users complain they cannot do attachments so I'm not sure if that feature is broken or not. Best bet is just to type the test results in manually. 

I'm not comfortable with posting my email address on the forum for public viewing. So, if you will manually enter the test results in your next post that would be best. Remember to include the reference ranges for the tests for what is normal or negative vs. what is positive as there are no industry standards for the reference ranges. Each lab uses their own.

Edited March 12, 2024 by trents

[trents]

This may be helpful in understanding what tests are run for celiac diagnosis and which are the most reliable. I should also add that many people are not warned by their physicians that they should not begin the gluten free diet until all testing is complete. Doing so likely sabotages the results and creates false negatives.

 

[celiacpaula]

Has anyone tried Gliadin? How long has  it been on the market ?  What are your thoughts on this?

[trents]

2 hours ago, celiacpaula said:

Has anyone tried Gliadin? How long has  it been on the market ?  What are your thoughts on this?

Many have. It's been on the market for years. Many report good results. The manufacturer of Gliadin is one of our forum sponsors. It needs to be understood that the product is intended to protect against minor exposures to gluten such as you would experience with cross contamination in a restaurant. It will not be effective if you throw caution to the wind and pig out on gluten.

[celiacpaula]

38 minutes ago, trents said:

Many have. It's been on the market for years. Many report good results. The manufacturer of Gliadin is one of our forum sponsors. It needs to be understood that the product is intended to protect against minor exposures to gluten such as you would experience with cross contamination in a restaurant. It will not be effective if you throw caution to the wind and pig out on gluten.

Thank you very much.

[celiacpaula]

 The file is too big. I dont know how to make it smaller. Sorry!

[trents]

4 minutes ago, celiacpaula said:

 The file is too big. I dont know how to make it smaller. Sorry!

Download a free program called Irfanview. Use the resampling tool to reduce the number of pixels in the picture.

Edited March 26, 2024 by trents

[celiacpaula]

thank you