Afraid to do gluten challenge…

[Dianasolvei]

There is a very strong possibility that my lifelong IBS and gluten sensitivity might actually be celiac, and my doctors have wanted me to do a gluten challenge. I got glutened and very sick, and now I have been off, gluten for one month and starting to feel a little better. I do much better on a gluten-free diet and every time I am exposed to gluten I end up getting sick and have a trip to the ER for severe constipation, kidney pain, microhematuria, and other things. This time my liver got involved….elevated liver enzymes. They’ve never tested me for celiac in hospital and I’m always really out of it so I can’t ask for the things I need. My brain just sort of goes off-line also with very foggy thinking. I’ve had it with my main stream doctors, and went to a Naturopathic Doctor who did extensive testing and found that I had nutritional deficiencies. B12, etc. None of my regular doctors ever did that testing. I’m really pissed off. They sort of ruined my life. I really don’t want to do a gluten challenge because I’m starting to feel better and it’s going to take me over a year to heal maybe longer. I have the DQ8 gene. Is there any other way to get diagnosed properly besides a gluten challenge?

[Scott Adams]

Unfortunately it's the only way that is currently used by doctors. I've heard of research on other ways, but nothing that is available at this point. 

Since it's very clear that your issues are caused by gluten, why is a formal diagnosis so important?  It seems like you already have your answer, and your genetic test results indicate that you could have celiac disease.

 

 

[Dianasolvei]

Yes, my issues are definitely caused by gluten. I guess I just wanted to have a formal diagnosis because I want it in my chart, so nobody diagnoses me the wrong way ever again! But, I guess it’s not 100% necessary, I will eat the way that is safe for me!

[knitty kitty]

@Dianasolvei,

You could go ahead and get an endoscopy now WITHOUT a gluten challenge.  Have lots of samples taken.  This way you would get a baseline with which to compare future endoscopies to check for healing and if other problems arise.  

Some people who have really severe reactions and nutritional deficiencies may have flattened or absent villi, a very strong indication of Celiac Disease.  It can take several months to a year for the villi to grow back.  Still, the sooner it's biopsied, the better.

People with gluten ataxia have antibodies against gluten that attack our nervous system.  Blood tests for celiac disease check for tTg 2 antibodies.   tTg6 antibodies are tested for in Gluten Ataxia.   

https://pubmed.ncbi.nlm.nih.gov/23576621/

And...

https://www.sth.nhs.uk/news/news?action=view&newsID=1264

[Scott Adams]

3 hours ago, Dianasolvei said:

Yes, my issues are definitely caused by gluten. I guess I just wanted to have a formal diagnosis because I want it in my chart, so nobody diagnoses me the wrong way ever again! But, I guess it’s not 100% necessary, I will eat the way that is safe for me!

One thing to consider, once it's on your chart you can't take it off, and you may pay higher private health and/or life premiums for life.

[Dianasolvei]

Oh wow! I never thought of that.

[Scott Adams]

Yes, when I had to get a new life insurance policy last year I was only able to do so by paying premiums that are closer to someone who is 10 years older than me.