Saturday, December 20, 2008

I'm not alone!

I complained about my lack of a "real" diagnosis in one of the forums at, and got several replies that indicate that many, many people are in the same boat. For one reason or another, they do not have the "absolutely certain" diagnosis of celiac disease, but their doctors felt that all available signs pointed to celiac, and gave them that diagnosis anyway.

I guess that I can accept a less-than-certain diagnosis. After all, I have a granddaughter with celiac disease; I have the right genetics to develop celiac disease; I have the symptoms when I eat gluten; I already have MULTIPLE autoimmune diseases, including Hashimoto's thyroiditis which is frequently associated with celiac; I have osteopenia and several nutritional deficiencies that show in my other words, I have all of the risk factors and indicators. I just don't have the antibodies or the villi damage! And that can be due to the prednisone I'm taking.

OK...I accept it. I do have celiac disease, confirmed by dietary response and other factors.


RissaRoo said...

I'm right there with GI doctor says it's either Celiac's or an intolerance so bad that it may as well be, but I can't get a "firm" diagnosis. I have two additional conditions that like to co-exist with Celiac's, so she's treating it like that's what it is. It used to bother me a lot more, but you're right...lots of other people are in the same boat!

InvisiGyrl said...

There is a genetic test you can get for $174 from
Unfortunatly for me, on SSDI I am having a REALLY hard time buying gluten-free and cannot afford the test. There are no Celiac Dr's where I live and I can't go 400 miles in my car. But maybe, someone else will find out for sure.

JoAnn said...

Hi InvisiGyrl,

Thanks for the tip! I've heard of Enterolab but have never used them.

But I've had my DNA tested and I do have one of the celiac genetic markers (HLA DQ8)

My doctor says that's not absolute proof that I have celiac. He thinks I probably do though, because I have the gene, I react VERY badly to gluten, and I have family members who have biopsy-verified celiac disease (including one of my granddaughters).

Regarding buying gluten free foods, I think the easiest thing to do is to first write down all of the foods you normally eat that are gluten free (like baked potatoes, corn tortillas, etc) and see how many meals you can make that are naturally gluten free.

I know what you mean by the gluten free foods being expensive, but I really think it's possible to go gluten free without it costing too much more than your usual diet....Mexican food and Thai food is usually gluten free, and Mexico and Thailand have very poor populations!

I try not to buy those expensive gf foods and instead make gluten free chili or gluten free chicken vegetable soup or something like that which fits my budget better and stretches for more than one meal.

I've now gone grain free as well as gluten free, so I use only coconut and almond flours to make biscuits, bread and muffins, but I don't eat them very often because it's expensive and I'm frequently too ill to make them.

Good luck to you, and blessings too!!

InvisiGyrl said...

One of my Facebook "friends" told me he could tell by the shape of my head that I am HLA-DQ8 also. (That's the European heredity)He's done a LOT of research and turned me on to this lab and other info, too. HLA-DQ8 - We are the ones that get fat with gluten, have degenerative disk issues and GI probs from gluten, among others.
After only 3 months g-free, I am struggling... but moreso from missing bread.
I have found that sourdough g-free works well for me so far, but I will try your bread recipe! Sourdough starter is easy to do and really makes a difference with g-free.
I have heard that wheat-based sourdough, proerly cultured destroys the gluten problems, but I don't know about that and have nothing to substantiate the claim that sourdough is ok as long as it is properly soured. (ALL the flour soured Overnight or longer)
The start-up costs to making g-free bread are expensive - to get all the different flours and make recipe mistakes. I have made a couple bricks.

InvisiGyrl said...

I am not understanding why any Dr would tell you he's not convinced, when you have the gene!
I realize that not all genes "express" but damn gyrl, you have the gene and you have the symptoms and the problems associated so why on earth would he/she/it be uncertain.
It's a no-brainer for someone far far away and not a Dr.

JoAnn said...


I know, but the problem is that in the gastro doctor community, the "gold standard" for diagnosis of celiac is a positive biopsy. It helps if you have positive bloodwork too. Both my bloodwork and biopsy were negative. He expected the bloodwork might be negative because I was (and am) on prednisone, but I think he feels he can't officially diagnose me with celiac disease without that positive biopsy.

Oh well....I don't have to have it confirmed. I know what gluten does to me!

InvisiGyrl said...

I know what you mean. I have suffered Lyme and most probably Celiac all my 54 years undiagnosed because of fools like that who won't commit.
But if he WOULD commit to a diagnosis, you could get help with your food bill!
Between that and S.510 passing IN SECRET today, I am horrified and completely depressed.
There's no hope for me and people like me anymore. I am on my own (Big Surprise).

JoAnn said...

Wow, I didn't realize the implications of S510 until you posted that comment! That is depressing!