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smalltownslackermom
Joined: 04 May 2009
Posts: 288
Location: mid north american continent
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 Posted: Tue Oct 27, 2009 7:49 pm Post subject: What should I ask for at this point? |
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I met with a seemingly very kind and conscientious GEnterologist today. He is willing to order the bone density X-ray scan for osteopenia for me if I ask. He did request an immunoglobin check on me. He would also order the genetic testing for me if I wish. I'll be scheduling a colonoscopy with him and they may do an endo at that time, I will have to check.
I told him I am most concerned personally with seeing if there is any permanent damage if I had had unchecked celiac for many years as seems possible with me. That's why I asked about the osteo-
I will do some searching on the board here but of course am open to any new comments or anything anyone wants to chime in here.
What would you recommend I ask for?
I was in and out of Drs offices for decades and they always checked me for rheumatoid factor and other stuff, gave me B-12 shots, but never checked me for celiac, you know the story...
Would a genetic test actually indicate my risk or is it more general?
I told him I am motivated to stay GF since I get too sick on gluten so if it only indicates some risk, I'd still stay gluten-free...
I need a full-on convening of forum.glutenfree's advisory board please!
(I just about cried - this was SO different of a gastro Dr. than when I had chronic diarrhea 7 years ago and no one checked me for celiac...)
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son - high ttg - 4/09, pos. biopsy 5/09
self - negative bloodwork 5/09, pos. biopsy 11/09
sister - gf for ~3 years and is a new person
niece - positive ttg 2/10, foregoing biopsy |
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teacherpat
Joined: 02 Aug 2009
Posts: 167
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| Posted: Tue Oct 27, 2009 9:11 pm Post subject: |
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Do you mean for routine testing or for further celiac diagnosis? 
My regular testing is:
Fat soluable vites-ADEK
B12 and Folate
Copper and Zinc-and all the usual liver, kidney stuff, cholesterol. Now if I could just get my blasted zinc up...very interested in seeing what everyone else gets 
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Pat |
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aklap
Joined: 02 Oct 2004
Posts: 10974
Location: WI, USA
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| Posted: Tue Oct 27, 2009 9:33 pm Post subject: |
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I had both EGD and Colo done during the same visit. As long as they have you "out", they might as well have their way with you. 
Dr. Peter Green [world renowned CD expert] suggests this:
http://www.enabling.org/ia/celiac/medcare.html
| Quote: | | Basic blood work is also included in the initial assessment. Such things as anemia and liver function need to be looked for. But it's very important to go further than that, and knowledge of the physiology of the small intestine should lead a physician to measure those nutrients that could be malabsorbed. Celiac Disease involves the small intestine, where iron, folic acid, calcium, fat soluble vitamins (Vitamins K, A, D, and E) and zinc are absorbed. These nutrients should be measured in the initial assessment and also during the course of the illness. Physicians will see patients who present with malabsorption of just one of these nutrients. If they are aware of the consequences of all these nutrient deficiencies, it will help them consider Celiac Disease as a possible diagnosis. |
Initial Assessment and Follow-up Care of Celiac Patients, by Peter Green, MD, summarized by Sue Goldstein
Even though it's not in this list - B12 should be checked as well.
Also, if the new doc is going to taking intestinal biopsies - ask him to make sure he takes enough samples. The total area of the small intestine is the size of a tennis court - lots of area for damage to hide in. Damage can be patchy, so one must make sure they take enough samples. Dr. Cynthia Rudert [a well known celiac Gastro in Atlanta] always takes 15 or more samples.
I'd also ask what other things they'd be looking for during an EGD. H.Pylori?
http://www.clanthompson.com/exp_doctor.php?status=show_qa&coded_question_id=52&coded_category=Tests%20and%20Their%20Results&coded_category_id=4
| Quote: | QUESTION: I was informed by someone who heard Dr. Rudert speak at the Oct CSA Conference in Atlanta that up to 15 samples are now considered required to insure accurate intestinal biopsy results for CD diagnosis. Is there an article that has been published that can be supplied to gastroenterologists to document this information?
DR. RUDERT: When I perform an endoscopy I generally obtain 15 or more samples from the jejunum/duodenum in order to ensure accurate intestinal biopsy results. This is not, unfortunately, an agreed upon practice and there are no publications that exist that indicate a minimal sample number that should be obtained.
Unfortunately, most Gastroenterologists do not obtain any small bowel biopsies during routine endoscopic procedures unless the duodenum appears abnormal. As I have mentioned in this column and in other publications, both myself and Joe Murray, M.D. from the Mayo Clinic, feel that all individuals should have small bowel biopsies undergoing EGD whether or not Celiac Disease is suspect. |
You might find some interesting info here: Clan Thompson's Ask the Doctor: Testing & Results
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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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LucyGoose
Joined: 14 Sep 2009
Posts: 183
Location: N.W. Indiana
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| Posted: Tue Oct 27, 2009 10:18 pm Post subject: |
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Wow.....thanks for asking this....I go to the gastro next month....I was wondering what all to ask, too....but only with me, my crazy GP doc told me I didn't NEED an EGD. So I am already on the diet......makes me mad.....I also have probably had this years, and I think I should of had the scope.....oh well.....Al, I will look at these links and make me a list..... I have terrible itching and something under my right rib that has been there for a long time and that durn regular doc says it's a MUSCLE.....okay, well....
Thanks smalltownslackermom! |
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teacherpat
Joined: 02 Aug 2009
Posts: 167
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| Posted: Tue Oct 27, 2009 10:50 pm Post subject: |
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| LucyGoose wrote: | I have terrible itching and something under my right rib that has been there for a long time and that durn regular doc says it's a MUSCLE.....okay, well....
Thanks smalltownslackermom! |
Does this "something" get worse when you eat fatty foods, radiate into your back or left shoulder
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Pat |
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cruelshoes
Joined: 23 Sep 2005
Posts: 3561
Location: Washington State
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| Posted: Tue Oct 27, 2009 11:49 pm Post subject: Re: What should I ask for at this point? |
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| smalltownslackermom wrote: | | Would a genetic test actually indicate my risk or is it more general? |
Some 30% of the population carries some combination of the genes most commonly associated with celiac. Very few actually go on to develop the diease. It is possible (albeit unlikely) to have celiac without those genes. I consider the genetic testing interesting, but not informative.
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-Colleen
Where are we going, and what am I doing in this handcart? |
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LucyGoose
Joined: 14 Sep 2009
Posts: 183
Location: N.W. Indiana
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| Posted: Wed Oct 28, 2009 9:07 am Post subject: |
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| teacherpat wrote: |
Does this "something" get worse when you eat fatty foods, radiate into your back or left shoulder |
No.....They did do a test on me.....trying to remember what now.....is the gallbladder there? Anyway, I will have the gastro look at my files.....and tell me what it was.......whatever it was....it was *normal*......Thanks! |
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smalltownslackermom
Joined: 04 May 2009
Posts: 288
Location: mid north american continent
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| Posted: Wed Oct 28, 2009 11:41 am Post subject: |
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| teacherpat wrote: | Do you mean for routine testing or for further celiac diagnosis?
My regular testing is:
Fat soluable vites-ADEK
B12 and Folate
Copper and Zinc-and all the usual liver, kidney stuff, cholesterol. Now if I could just get my blasted zinc up...very interested in seeing what everyone else gets |
I do not have a celiac diagnosis. It might be very hard to get one of me if I have celiac because I have been gluten-free for most of the last year, right? I say most because I did try a gluten challenge back in May but I couldn't take it - I was much too sick, I was in too much pain, too many symptoms, etc... I also know of a few times when I have been CC'd. Quite a few at first because I didn't know anything except that I seemed "allergic" to wheat, it made me sick so I avoided it but I didn't know how careful I should be. then I learned a little about celiac... and then I learned even more!
But I am going to be knocked out for a colonoscopy soon so I wonder if it's worth it to do the upper endo with samples. If I'm going to have it, it may as well be done at the same time. Why waste some good anesthesia, as Al points out, right? "The small intestine usually heals in 3 to 6 months in children but may take several years in adults" ahhh... several years... ok, so a multi-sampled biopsy might be a good idea...
If I had negative biopsies, I wouldn't eat gluten again, I would just assume that I'm doing pretty good. if I get stuck in an old folks' home someday and they try to feed me wheat, I'll just throw it in their faces or they'll get to clean up the toilet and my bum, right?
Checking for deficiencies and the bone test sound good. That is very practical stuff the we can do something about. Thanks for that info.
I think this Dr must run into plenty of people who have gone gluten-free on their own, I was all prepared to defend myself but I didn't have to. I'm so glad. But I don't think he or most Drs have much of a game plan for the "self-diagnosed" at this point. I will ask them if they do the "rectal challenge" yet.  maybe I could have that done the same day if they do it...
sigh... I apologize for my wishy-washiness - I am thinking aloud here.
ok and this link suggests that many adults take a long time to heal:
http://celiacdisease.about.com/b/2009/06/17/when-celiac-disease-is-diagnosed-in-adulthood-intestines-dont-always-heal-completely.htm
and it says this "Just having your symptoms go away and having normal blood tests does not necessarily mean your intestine has completely healed."
Even after all the reading I've done, I still did not know or remember this. so it could be good info. one, I'd have a base-line - either fairly normal or healed or two, possible if I had had unchecked celiac, some damage still lingering...
_________________
son - high ttg - 4/09, pos. biopsy 5/09
self - negative bloodwork 5/09, pos. biopsy 11/09
sister - gf for ~3 years and is a new person
niece - positive ttg 2/10, foregoing biopsy |
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