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aklap
Joined: 02 Oct 2004
Posts: 8786
Location: WI, USA
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 Posted: Wed Jan 04, 2006 3:59 pm Post subject: Univ. Chicago CD Progam: Followup Testing |
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Here is what the Univ. of Chicago CD Program says about followup testing:
http://www.celiacdisease.net/assets/pdf/CDCFactSheetsFollowUpTests7.pdf
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Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa
Last edited by aklap on Thu Nov 01, 2007 8:24 am; edited 2 times in total |
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Professor
Joined: 19 Oct 2005
Posts: 757
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| Posted: Wed Jan 04, 2006 9:42 pm Post subject: |
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Al, it's interesting that you should post this . . . just yesterday I talked to my lab tech where I get my weekly CBCs, and told her that since diagnosis, I've NEVER had follow-up testing. I was diagnosed in the dark ages, and perhaps it was just the doctor I went to, but I was just told how to live GF and that was it.
Well, my CBCs aren't the greatest right now -- low counts, as usual (I'm in bone marrow failure), but the red blood cells are oddly shaped. Used to be just a few, but now the reports say "moderate" number of dysplastic cells. I talked to the tech, and then went online to read more about possible causes of burr cells, ovalocytes, and macrocytes, and read that vitamin B12 and folic acid deficiencies could be the cause -- they even mentioned possible malabsorbtion from celiac disease as a possibilty. (Always another thought -- go back to my hematologist/oncologist and discuss this?)
So, maybe I should be tested to make sure I'm not getting any gluten?? I'm SOOOO sensitive to gluten that I think I'd know if I was getting any . . . or so I believe.
Any thoughts, anyone?
Lexi |
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aklap
Joined: 02 Oct 2004
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Location: WI, USA
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Professor
Joined: 19 Oct 2005
Posts: 757
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| Posted: Thu Jan 05, 2006 12:50 pm Post subject: |
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| aklap wrote: | Hi Lexi,
EEEK!!! Bone marrow failure???? I don't think I've heard of that. Have they tested you for Leukemia? I think I'd be talking to someone about this!
Have they ever done a B12 check on you? It's very common for a celiac to be B12 deficient - usually due to villi damage.
I take sublingual B12 (1000 mg) almost everyday because of my PN. It might not hurt for you to get on some B12. You might get them to check your levels 1st tho. But if testing is not going to happen...I think I'd start taking it anyway. It's safe.
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Yes, I've had this (marrow failure) for a while -- due to excessive exposure to benzene and methyl-ethyl-ketone. It's a rare disease; I have the acquired version (not hereditary). About 2 people in a million get it. It's considered pre-leukemia. No cure except a marrow transplant, and I have no related (family) match. (At my age, without a relative to donate, I stand no chance of surviving the transplant year.) I do have a hem/onc doc I go to, but it's just supportive care mostly (transfusions as needed). Last bone marrow biopsy I had about 20% of my marrow left -- should be at least 60-70% at my age (49.5!). It's dwindling . . .
Anyway, that's all another story -- was just part of explaining why I get weekly CBCs, and my curiosity about dysplastic (Greek for "abnormal growth") cells. Used to just have aplastic marrow (obviously, "no growth"). Seems to be progressing . . .
OK, I'll read some of those links, but they are all starting to look familiar!  I've been to the NIH, talked clinical trials, etc.
As far as B12, I take a multivitamin daily that has 100% of it (and 100% of folic acid) -- is that not enough? Yes, I think I'll get a check on my levels first.
Thanks for the links, Al!
Lexi |
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aklap
Joined: 02 Oct 2004
Posts: 8786
Location: WI, USA
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| Posted: Thu Jan 05, 2006 2:38 pm Post subject: |
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YEOW!!! I am sorry to hear that you have those kind of problems. It sounds dangerous. I am glad you keep an eye it!! I'll double up on the prayers for you.
Any word on your Dad?
For the B12's...depending on your levels...it may not be enough or the right type. You'll see in those links about the Methly and Cyano forms of B12. Methyl is the best form.
I best get back to work... 
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Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
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Professor
Joined: 19 Oct 2005
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| Posted: Thu Jan 05, 2006 4:24 pm Post subject: |
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| aklap wrote: |
Any word on your Dad?
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Just went online to find the hospital's phone number -- to see if they had him in a "real" room yet, with a phone (out of ICU) and I could maybe talk to him . . .
Well, he is still in ICU, but they let me talk to him for a while anyway -- he sounds VERY good. I asked him if it turned out to be a McD's French fry or a hunk of Dunkin' Donut clogging that artery -- he thought the French fry. Anyway, there's a stent in his heart, but he has some abnormal rhythms still, and the groin artery is STILL bleeding from where they did the procedure, so he has to stay in ICU. (They cut a quarter-inch hole in the artery at the groin, where they insert the catheter -- no wonder it's still bleeding!)
Oh, the hospital (Maine Medical Center) has a link from it's website where you can send a patient an email -- volunteers print them, put them in an envelope, and hand-deliver the messages. VERY nice, so I did one. But, funny thing here . . . there is a note on the site that reminds people that the volunteers do see these, so please don't write obscene or profane messages! Right! Is that a normal way to greet the ill -- obscene and profane messages? Not in MY family!
Lexi |
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Al
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| Posted: Thu Jan 05, 2006 4:45 pm Post subject: |
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I guess it could be worse. Hopefully his heart will settle down soon. It sounds like he's in good spirits. If he's anything like my Mother or FIL - I'm sure he's driving the staff nuts!! LOL If he his...then you know he's feeling better.
Ahhh yes...Nothing like a good obscene or profane message to raise your spirits when you're in the hospital!! 
That's a cool idea!! The email thing...not the obscene messages...although....  hehehehehe
I'm sure that has happened...otherwise they wouldn't say that! LOL
Thanks for the update.
Al |
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aklap
Joined: 02 Oct 2004
Posts: 8786
Location: WI, USA
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| Posted: Tue Apr 18, 2006 3:37 pm Post subject: |
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bump for Copper
_________________
Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
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aklap
Joined: 02 Oct 2004
Posts: 8786
Location: WI, USA
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| Posted: Fri Jun 30, 2006 4:25 pm Post subject: |
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bump for MN Grannie
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Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
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aklap
Joined: 02 Oct 2004
Posts: 8786
Location: WI, USA
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| Posted: Mon Aug 14, 2006 7:15 am Post subject: |
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bump for West
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Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
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cruelshoes
Joined: 23 Sep 2005
Posts: 2680
Location: Washington State
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| Posted: Thu Nov 01, 2007 8:23 am Post subject: |
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The link at the top has been moved. It is now at:
http://www.celiacdisease.net/assets/pdf/CDCFactSheetsFollowUpTests7.pdf
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-Colleen
Dx 8/05 via bloodwork/biopsy
10-YO son Dx 11/05 via bloodwork/biopsy
Daughters (12 and 2) have neg. bloodwork
A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt |
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aklap
Joined: 02 Oct 2004
Posts: 8786
Location: WI, USA
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| Posted: Thu Nov 01, 2007 8:24 am Post subject: |
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Hey thanks Colleen!! I'll update it above too.
_________________
Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
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