Celiac Genes and gluten free

[Young.Celiac]

On 2/17/2023 at 12:04 PM, Burted said:

Yea I think they want to take samples, I’ve been told not to go gluten free until I have had it done as it can mess with the results 

I recently came across this community and everything Ive read so far has been very helpful. I’ve just learned that Celiac Disease is something that runs in my family (via MyChart/Medical Records). Ive recently started a gluten free diet and I've already experienced less pain, less mucus, and calmer BMs; especially in the morning. I haven’t been diagnosed and plan on moving to another state soon. Im 24 years old, Ive been experiencing celiac disease symptoms since I were 16. I’ve already begun the gluten free diet, but Im sure a diagnosis would be a helpful benefit to my journey w/ this. Im not sure what to do.

[patty-maguire]

Yes, you need to be consuming gluten to get accurate test results.

As for what to do, it's really a personal choice and you need to weigh the pros and cons.

Some of the pros of receiving a formal diagnosis are:

1. Follow up care.  If you have celiac disease you should be monitored for things like nutrient deficiencies, bone density and have follow up celiac screening to ensure your gluten free diet is working.  Here is a good resource from Celiac Canada about follow up care.  Even if you're not in Canada it's still good advice.  https://www.celiac.ca/healthcare-professionals/management/

2. Help with gluten free diet - depending on where you live or what type of insurance you have, the services of a registered dietician may covered.

3. Help with cost of GFD - depending on where you live, there may be some help with the cost of food.  For example, UK offers some foods on prescription.  Canada offers a tax rebate.

4.  Confidence that what you have is real.  I think this might be the most important one.  There will be times you'll be tempted to cheat on your diet.  There will be times you'll second guess yourself "maybe gluten isn't my problem".  There will be people in your life you will question you and be unsupportive, "you're just being a picky eater", "oh come on, a little won't hurt", "oh you're one of those", "you're just looking for attention", "was this diagnosed by a REAL doctor or one of those naturopathic quacks?".  You'll get the eye roll from servers in  restaurants.  There will even be people who will try to slip you something with gluten just to prove you're making it up.  Don't get me wrong, 99% of people are great and helpful and supportive but those few can make you question yourself.  It's much easier to navigate and stand up for yourself if you have a formal diagnosis.

Cons: The only con is the gluten challenge and how uncomfortable that can be.  It's enough that many people choose not to do it and I don't blame them.  You can manage you're condition with diet and so long as you're committed, you don't really NEED a diagnosis.  It's up to you.

Hope this helps

All the best.

 

[Scott Adams]

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

FYI: Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.