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Post-diagnosis Tests
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5 posts in this topic

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...

:blink:

Amy

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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

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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

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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

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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

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    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
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       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
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