4 replies to this topic

[armarti2]

I just had (MORE!) blood work done - testing fat-soluble vitamin absorption. They're also going to do a bone density scan - how is this done? Anything else I can expect? I thought I'd be done with the tests...

Amy

[Canadian Karen]

Hi Amy..... unfortunately, it is par for the course where celiac is concerned....

I just went to a celiac specialist this week, he also mentioned he is going to do a bone density test on my since I have had difficult to control celiac (he's not calling it refractory, yet....) for many, many years...... he said it is quite common for our bones to deteriorate due to our malabsorption.... he of course also did bloodwork too!!! I don't mind the tests though - I feel comforted in the fact that they are staying on top of it and not just ignoring this disease.....

Have a great day!
Karen

[lovegrov]

Bone density is a painless procedure involving bone measruements by x-rays. I wouldn't think you'd be looking at more tests unless you don't improve. If they find some sort of major nutritional deficiencies they'll probably take more blood in a few months to see if that's improved.

richard

[ryebaby0]

I'm with Karen; a doctor who wants more than a quick dx and dietary change knows what they are doing. Celiacs so often have profound nutrition issues when newly diagnosed, and they can be so easy to fix. My son took iron, zinc and folate for months, and it really helps him heal and feel better.
And refractory sprue, Karen? We saw a well-known GI at Johns Hopkins and it is her opinion (I'm paraphrasing, no lawsuits) and that of many "cutting edge" GI departments that there is no such thing. A celiac should get better (either clinically or pathologically) on a verified gluten-free diet. If you don't get better, there's more going on. Her thinking is the longer you've been sick, the longer it takes to truly recover, but long-term, the gluten-free diet should do it. Otherwise, you aren't really gluten-free, you have multiple allergies, multiple gi issues, or something. Have you contacted the Mayo Clinic? They do the most work studying "refractory" sprue and its solutions. I was amazed--they returned my emails!

joanna

[Canadian Karen]

Hi Joanna.....

I would love for that to be the case (no such thing as refractory, that is....) as it would life a huge weight off my shoulders..... I think I will contact the Mayo (do they answer questions from someone outside the U.S., i.e. Canada?) I will wait though until after the colonoscopy and biopsies give us more answers that we are looking for and what we are dealing with..... I should hear within the next few days when the colonoscopy is scheduled for.....

But if it is the case where the longer you have had celiac, the longer it takes to heal, that would make sense in my case. I have had bowel problems starting as a child, anemic my whole life, diagnosed for the first time as celiac in my early 20's.... after a year on the diet with no change, he changed his diagnoses to Crohn's disease.... that is until 1 1/2 years ago when the blood test and biopsy confirmed celiac for sure.... so it really has only been 1 1/2 years gluten-free (with some inadvertent slips....). I am 41 years old now, so that is A LOT of years of damage done..... Maybe there is hope for me to see improvement yet!!!!

Karen