Is A Celiac Dx Necessary?

[FruitEnthusiast]

I already know I'm gluten intolerant. I'm wondering how important it is to have an official Celiac DX, and I could use some opinions.

 

I just went to see a new GI at UCLA who specializes in Celiac/Gluten Intolerance to address my ongoing chronic C that is closely related to the multiple food sensitivities that started after I went gluten-free 2 1/2 years ago. I'm still sick and figuring out what I can and can't eat.

 

Of course this new Dr. thinks it's important to know if I have Celiac or not. I asked him how Celiac treatment would differ from NCGI treatment. He said Celiac is an autoimmune disorder with inflammation which makes it more serious, and it would be more important to monitor my vitamin/mineral levels to guard against bone loss, Vit D deficiency, Thyroid problems, etc.

 

I knew all of that already from what I've learned on this site and my other readings. So far he's given me a Celiac Genetic blood test, but I don't have the results yet. Will that test tell me anything?

 

I've always said I won't do the "Gluten Challenge", and he hasn't asked me to - yet. Honestly I don't think I'm well enough to do it. I have enough trouble getting what I can eat in my body… and out again (sorry if that's TMI)

 

Does anyone think doing the "Gluten Challenge" and getting a small intestine biopsy is worth it for a certain DX. Or can I continue to monitor myself and get tested for deficiencies/imbalances as if I had Celiac to be on the safe side?

 

Is it necessary to know for sure if I have Celiac? I'm going to continue being gluten-free regardless, and continue taking extra good care of myself.

[SMRI]

The only issue I could see is your insurance company not covering the tests without a diagnosis that supports needed those tests annually or however often.

[FruitEnthusiast]

Yes, I was wondering about that too, something to consider. Thanks.

[WinterSong]

Besides the insurance issue.....

 

I'm fortunate enough to have a solid diagnosis. I've heard a lot of gluten sensitive people on this board say that they would get too sick doing the gluten challenge and for them it wasn't worth it. They just treat it as seriously as a Celiac would. My mom is also one of those people. 

 

Some people feel like they can cheat if they don't have a Celiac diagnosis. My sister is most likely gluten intolerant or Celiac, but she won't do a thing without positive blood work. 

[1desperateladysaved]

Is there some reason to believe you would ever have serious doubts?  Would someone very near (in the house) have serious doubts which could cause you trouble for you or them?  Would you qualify for tax advantages or other advantages if you had a celiac diagnosis?  Personally I thought for me the gluten challenge would be unethical, because I perceived my reaction could be extreme or dangerous.  I did a genetic test and think it was useful.  I found that incredibly I did have 2 copies each of DQ2 and DQ8.  From that I could somewhat guess at my children's having at least one of the genes and both of my parents had to have it.  Now, they can all watch for symptoms and hopefully won't have to suffer for 30 years before making a discovery of celiac.

 

  I do like to keep track of my nutrient levels and I think it could be much cheaper to check some of those than to do the challenge and associated testing.  Have you ever had anemia or other known deficiencies?  I also think it could be good to do an endoscopy (I finally did) to ) see if the damage is healed,( if there was any), and to look for other possible causes for the symptoms.  The celiac damage should be healed up after 2 years.  If you feel your symptoms changing when you went gluten free will keep you consistent with the diet, all you must do is get better!  Keep your diet as varied as possible.  I had to go for some new foods and a few old ones.

 

Best wishes for healing.

 

Dee

 

We have both been at this a couple of years.  I am sorry to hear that you are still having some really tough times.