Advantages vs. Disadvantages of having an official Celiac diagnosis

[Brianne03]

My daughter was recently diagnosed with Celiac; my results are questionable and I have an appointment scheduled to see a GI doctor to further discuss. I have so many odd, ongoing symptoms that could possibly be gluten related, although who really knows!! I am considering going gluten-free whether a Celiac diagnosis is confirmed or not, just to see if there are any improvements with my dermatitis, mouth sores, aching and chronically cold hands, tingling in hands and feet, random joint pains, etc. 

What are the advantages vs. disadvantages of having an official Celiac diagnosis? For instance, will it affect life insurance policies, medical insurance rates? What have you personally experienced with or without an official diagnosis? I'm almost afraid there will be more hinderances and hardships if an official diagnosis is given, but maybe I am way off base and missing the positives altogether.

We are located in the US. Thank you!

[ALynn]

Many studies need the diagnosis to participate. 

[Scott Adams]

Yes, it will affect your life insurance rates for sure, and possibly your health insurance rates, at least in the future. I pay very high rates for life insurance in comparison to others I know who are my age, and my last policy was harder to obtain due to my diagnosis. As for health insurance, currently under the ACA you can't be denied or charged more if you have a preexisting condition like celiac disease, however, this could change under the new administration, as they have vowed to implement many changes to the health care system. 

Also, regarding follow up testing that should be done on those with celiac disease, many doctors don't do this, and in my case I've had to push for such follow up--for example nutrient deficiency screenings and follow up antibody testing. Depending on your relationship with your doctor, you may be able to get these things done without a diagnosis, or you may not even need to have them done. Most people who have celiac disease and go 100% gluten-free do recover well, and their symptoms go away, but for some, further dietary changes may be necessary, as many have additional food intolerance issues (at least temporarily until their villi fully recover). 

[Scott Adams]

Another issue is that most job applications now ask if you have celiac disease, and include it in their list of disabilities which they want you to declare up front. This could lead to discrimination when looking for employment:

 

[JA917]

On 12/3/2024 at 1:01 PM, Scott Adams said:

Yes, it will affect your life insurance rates for sure, and possibly your health insurance rates, at least in the future. I pay very high rates for life insurance in comparison to others I know who are my age, and my last policy was harder to obtain due to my diagnosis. As for health insurance, currently under the ACA you can't be denied or charged more if you have a preexisting condition like celiac disease, however, this could change under the new administration, as they have vowed to implement many changes to the health care system. 

Also, regarding follow up testing that should be done on those with celiac disease, many doctors don't do this, and in my case I've had to push for such follow up--for example nutrient deficiency screenings and follow up antibody testing. Depending on your relationship with your doctor, you may be able to get these things done without a diagnosis, or you may not even need to have them done. Most people who have celiac disease and go 100% gluten-free do recover well, and their symptoms go away, but for some, further dietary changes may be necessary, as many have additional food intolerance issues (at least temporarily until their villi fully recover). 

Question re: life/health insurance: if you're already under these policies, do you have to notify them if you receive an official diagnosis, or is that only for new policies?  I have had two active term life insurance policies for many years that I pay a set amount into.  And my employer covers my health insurance.  So, do I need to let them both know if I do become officially diagnosed?  I'm glad I read this, because that would certainly be marked off in the "disadvantage" box for me!

[Scott Adams]

I don't believe that existing life insurance policies require such notifications--health checks are typically done before such policies are obtained. I believe it would primarily affect any new policy you get, and perhaps any policy renewal.