04-02-2012, 08:19 AM   #1
Dutch941
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Vitamin deficiency

I recall seeing several people mention testing UC kids for various vitamin deficiencies ..we have lab work today and I want to ask if he's being tested for these levels....can anyone tell me what we should be checking for? B12? Vitamin D?, etc.....etc........
Are these tests normally done with routine lab work?
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Father of 3....Matt, Cam, and Kyra

Matt age 13
Dx dec 2011. UC
Pentasa, fish oil, b12
6mp from dec 11 to oct 12(stopped after liver enzyme issue)
04-02-2012, 08:55 AM   #2
Tesscorm
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Hi Don,

Sorry I'm not the best person to answer this... but, I do remember that tests should be run for Vit D, B12, Folate, Zinc, Iron, Hgb, etc.

There was a recent thread posted by momoftwinboys where she discussed the nutritional testing she requested. The link is:

http://www.crohnsforum.com/showthread.php?t=33871

Also, have a look through the Wiki under vitamins, etc.

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Diagnosed May 2011

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May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
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04-02-2012, 12:15 PM   #3
izzi'smom
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^yeah, that!
Our doc did NOT normally test for these, I had to ask. Also, be sure that you get a copy of results. When I asked that she be tested last month, I pulled old records and found that she had been vit d deficient for a YEAR and nothing was done.
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04-02-2012, 03:59 PM   #4
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The majority of vitamin and minerals will not be tested through routine blood work, you will have to specifically request it unless your doc is very on the ball.

Many of the deficiencies occur when there is small bowel disease present as this is where most of the absorption in the intestine takes place BUT large bowel disease is also a risk factor for some deficiencies as are the consumption of certain medications.

There is a comprehensive list in the wiki that I suggest you read through as most contain information about either where in the bowel absorption takes place, which types of IBD are at risk and/or what medications may affect absorption.

http://www.crohnsforum.com/wiki/Vita...l-Deficiencies

I would make a list and then ask the doctor to do a request.

Dusty. xxx
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04-02-2012, 04:12 PM   #5
Dutch941
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I'm going to print the wiki list out...right now I have all tests since diagnosis and it appears he has been following vit D but not the others....this may be due to the fact that we are dealing wit UC effecting only the large intestine.....I'm going to request the others at next appointment just to be thorough.
Thanks all.
04-02-2012, 04:17 PM   #6
Jenn
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We've only tested for specific vitamins as Alex's GI thinks necessary: Vitamin D, Calcium, B-12, Zinc. Iron is routinely checked, I think. We've responded with adding/removing supplements as we go. Sure wish there was a protein/albumin one, he's always low- picky eater.
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currently on Humira, Feb 2012+, MTX (25mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
04-02-2012, 04:22 PM   #7
imaboveitall
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The Saint does B12, iron, calcium, Vit D, and did a DEXA scan for bone density.
Also full metabolic panel every f/u. That doesn't show vit per se but does give good info on nutritional state overall.
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Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
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atenolol
Florinef
cyproheptadine
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04-03-2012, 07:34 AM   #8
izzi'smom
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Re: the DEXA scan...I decided not to do it. It is low dose radiation but unless it is going to change treatment (many of our kiddos are already taking a ca supplement...it is just not effectively absorbed).
I figure I am going to keep her rad dose as low as possible for as long as possible.
Long term pred use was the reason I was considering it...I am surprised your doc wanted to radiate V...was there another indication besides malabsorption?
04-03-2012, 01:49 PM   #9
imaboveitall
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Angie, he said he does them on all his IBD pts routinely to get a baseline. This was done maybe ...six months after dx?
Her result was normal so he never repeated it, but I think he said he repeats if abnormal, after calcium/ Vit D therapy.
04-03-2012, 02:29 PM   #10
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Not sure if all x-rays are 'DEXA', but Stephen also had x-rays done on his wrist and back (because it had been sore for months) when he was diagnosed. Hasn't even been a year but, so far, no mention of repeating (all was normal when x-rays done).
04-03-2012, 05:27 PM   #11
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I hear you with the radiation levels and testing! Alex also did a DEXA at dx, as a baseline and was normal and no repeat (so far). We did a hand xray to check bone-age (2 years delayed, not skipped at least). It was a lot of radiation with the barium upper GI test. and a swallow test (no repeats). Then 2 MRIs to confirm a fistula existed and healed last year. Also, a CT scan last Jan to rule out an obstruction when he was feeling sick. I've mentioned being concerned about the levels a few times, but nurses/doctors don't seem to care. Of course you need to find out stuff, just don't like the long-term cancer risks with them.
04-03-2012, 05:43 PM   #12
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Don't know about the others, but vitamin D tests can are simply, inexpensive and can be conducted by virtually any lab. One good way to know if your doctor is any good is whether or not he or she has ever asked you to have your vitamin D levels checked. This goes for everyone, not just people with Chron's.

Vitamin D Deficiency has been linked to something like 40 or so diseases that are all fairly common, so if your doc has never brought up the topic, it's probably time for you to find a better physician.
04-03-2012, 09:05 PM   #13
Dutch941
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Yeah....we ve had it checked twice sincedec 2011
04-06-2012, 10:34 PM   #14
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I had not thought anything about xrays/radiation till I read this post and shortly thereafter saw this article ....one more thing to stress about....

http://www.medicalnewstoday.com/releases/243557.php

X-Ray Radiation Exposure May Be Greater For Patients With Digestive Disorders
31 Mar 2012

Patients with inflammatory bowel disease (IBD) and other gastrointestinal (GI) disorders may be exposed to significant doses of diagnostic radiation, according to a new study in Clinical Gastroenterology and Hepatology, the official journal of the American Gastroenterological Association.

"Our results show that significant increases in radiation exposure in the last decade have paralleled the increased use of computed tomography imaging," said Alan N. Desmond, MB, BMedSc, MRCPI, of the Cork University Hospital, Ireland, and lead author of this study. "While cumulative exposure is highest in patients with Crohn's disease, high exposure may also occur in patients with other gastrointestinal disorders."

Researchers analyzed data from 2,590 patients who were diagnosed with GI disorders at a tertiary gastroenterology center from January 1999 to January 2009. Diagnostic imaging was performed on 57 percent of the patients. Results showed that higher levels of annual and total diagnostic radiation exposure were associated with IBD and other GI disorders, including benign conditions of the small bowel (such as celiac disease and bacterial overgrowth) and liver (such as fatty liver disease and benign liver cysts). Higher total exposures were also seen in a small number of young patients with functional GI conditions (such as irritable bowel syndrome and unexplained abdominal pain syndrome).

The clinical benefits of widely available diagnostic imaging of the GI tract are not in doubt. This is particularly true for patients with disorders such as Crohn's disease, who often require abdominal imaging to determine the extent of their disease and detect complications. Access to high-quality imaging facilities and the advent of rapid-acquisition computed tomography (CT) have made CT imaging of the GI tract valuable and widely used. However, because CT uses higher levels of radiation than other imaging options, more widespread use has led to increases in the amount of radiation to which patients are exposed. This is a cause for concern, because radiation exposure might be associated with increased lifetime risk of cancer. These risks may be particularly relevant to younger patients.

"Most patients with gastrointestinal disorders had diagnostic X-rays performed at some point during their work-up, with older age and longer duration of follow-up both increasing the chances of having multiple X-rays performed," added Dr. Desmond. "In this study, we were particularly interested in patients whose cumulative radiation exposures were in the top ten percent for the entire population. The majority of these patients were being investigated for inflammatory bowel disease. The most concerning finding might be that more than half of the patients in this higher exposure group were younger than 35 years of age."

Alternative, radiation-free imaging options, including ultrasound, capsule endoscopy and magnetic resonance imaging, are available. However, evidence-based guidelines on the use of diagnostic imaging in patients with GI disorders, especially those that reduce radiation exposure, are still needed.

The authors emphasize that diagnostic X-ray examinations, including CT, are valuable diagnostic tests that allow speedy and accurate diagnosis of many conditions and pose little or no risk to the majority of patients. The authors' findings have led them to perform further research showing that new, low-radiation techniques for performing CT scans are particularly useful in patients with Crohn's disease. They will publish this new research in the near future.
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"The decision to have a child is to accept that your heart will forever walk about outside of your body" Katherine Hadley
04-06-2012, 11:22 PM   #15
DustyKat
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When it comes to Matt this is something I have well and truly put my head in the sand about! Well not really buy I imagine you all know what I mean.

Matt had a difficult post diagnosis period due to complications and so required multiple imaging of various kinds. As the article states, CT's are a valuable diagnostic and tracking tool and the only saving grace was the radiographers were very mindful of his age and so did CT's with reduced radiation, phase 1 I think they called them.

Ugh! I don't want to think about it!

Dusty. xxx
04-07-2012, 07:29 AM   #16
Dutch941
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This bothers me as well....does anyone think this is cause to limit dental X-rays......or for example x rays related to possible injury? I took Matt to ortho for a sprained ankle and they x rayd it just to be sure.......should I have passed on that?

Last edited by Dutch941; 04-07-2012 at 07:30 AM. Reason: Typo
04-07-2012, 08:45 AM   #17
imaboveitall
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AW Dutch, don't get nuts over things like routine xrays on his ankle or dental xrays. The concern is with repeated abd xrays, because then organs are in the rad field.
Though V had (1) DEXA scan (bone density type of xray) and (1) fluoroscopy for UGI/SBFT, she's never had CT imaging, but did have an MRI of her head after those "migraine" events, and a chest film at dx when I thought she had lymphoma So now I'm tallying it up...obsessing is fun (not)

Tess, no, DEXA is a specific type done for bone density, the term doesn't apply to regular films done for other reasons.
04-07-2012, 09:40 AM   #18
momoftwinboys
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Dusty, perhaps Matt's radiographers were ahead of the curve and what the article is refering to below

"the only saving grace was the radiographers were very mindful of his age and so did CT's with reduced radiation, phase 1 I think they called them"

"The authors' findings have led them to perform further research showing that new, low-radiation techniques for performing CT scans are particularly useful in patients with Crohn's disease. They will publish this new research in the near future. "

Dutch, I was thinking the same thing since my son recently had his thumb x-rayed for a possible fracture. Maybe I should have passed on the just to be sure xray.... He has not had other exposure tests, but he has a long life to live so I will be aware of what is done. Aboveitall, thanks for pointing out the organ aspect, that makes sense.

At the end of the day, it is the same ole risk vs reward tradeoff we all face with all these lousy decisions we have to make. It may increase the POSSIBILITY of something down the road has to be balanced with the REAL situation at hand.
04-07-2012, 09:46 AM   #19
Dutch941
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Yea..lucky us right?
04-07-2012, 09:48 AM   #20
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"The authors' findings have led them to perform further research showing that new, low-radiation techniques for performing CT scans are particularly useful in patients with Crohn's disease. They will publish this new research in the near future. "
Good heavens! See, by the time I got to the end of the article my head was buried so deeply in the sand I completely missed that statement!

Thanks hun!

Dusty. xxx
04-07-2012, 04:31 PM   #21
izzi'smom
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For comparison, a jaw CT dose is 2.1 mSv; 3 plain dental x-rays are around 0.023 mSv.
Sometimes providers get a little crazy ordering x-rays...if your elbow hurts, no need to x-ray the shoulder to fingertips.
For plain x-rays, always ask for shielding (not possible for abdominal xrays). You can also ask for a thyroid shield (covers the thyroid gland in your neck...another sensitive organ). CT doesn't shield many times; the beam is tiny and most of the radiation radiates from inside the body; there is speculation that a lead shield will trap the radiation inside the body increasing the dose. (Radiation "bounces" until it loses energy and is absorbed). Also ask if the scanner has dose reduction technology if you have a choice of where you'd like to get it done...it uses about half of the dose of conventional scans.
Regardless, just one abdominal CT scan increases the risk of ovarian cancer in women.
This is why we need to weigh the risks vs potential benefits, just like with the drugs we choose.
The cells most targeted are sex cells; also, fast growing cells (this is why you shouldn't be x-rayed while pregnant and also why radiation therapy is used for cancer).

Examination/Effective Dose in mSv/ Equivalent no.of ChestX-Rays/ Equivalent period of natural background radiation
Extremity Xray eg. knee, ankle 0,01 0.5 1,5 days
Chest Xray 0,02 1 3 days
Skull Xray 0,1 5 2 weeks
Cervical Spine Xray 0,1 5 2 weeks
Dorsal Spine Xray 1,0 50 6 months
Lumbar Spine Xray 2,4 120 14 months
Hip Xray 0,3 15 2 months
Pelvis Xray 1,0 50 6 months
Abdomen Xray 1,5 75 9 months


Barium studies:
esophagus 2,0 100 1 year
Stomach/ duod 5,0 250 2,5 years
Small bowel 6,0 300 3 years
Colon 9,0 450 4,5 years
IVP 4,6 230 2,5 years


CT head 2,0 100 1 year
CT chest 8,0 400 4 years
CT abdomen 8,0 400 4 years
04-08-2012, 08:06 AM   #22
Catherine
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Our gi didn't even consider doing a CT for Sarah, he did MRI instead.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-09-2012, 08:11 AM   #23
Tesscorm
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Thanks for all that info, Angie! I had no idea of how much radiation our kids are exposed to when these tests are done!

Is radiation cumulative? ie, Angie, you said "just one abdominal CT scan increases the risk of ovarian cancer in women" - will this increased risk from one scan last a lifetime or does the radiation/risk reduce after a time period?
04-09-2012, 12:03 PM   #24
imaboveitall
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Tess, rad exposure is cumulative in that, the more an area is exposed, the more possible mutagenic effect.
The effect to an area happens at exposure, though it may take years for actual cell mutation to show up, i.e., cancer.
Time out from exposure does not reduce the effect that has already happened at exposure.
Mutagenic, hypoplastic change that occurs years after may not be traceable to the source.
04-09-2012, 12:11 PM   #25
Tesscorm
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Thanks Julie.

I'm sure that there are situations/injuries where x-rays and CTs are necessary and unavoidable, however, with regards to Crohns, wouldn't ultrasounds, scopes and MREs provide all the same info as CTs, barium x-rays, etc.? Is it sometimes simply a matter of availability and/or cost of the equipment?
04-09-2012, 12:17 PM   #26
imaboveitall
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I guess physician preference. V has never had ultrasound nor CT, only fluoroscopy. She is scoped every year, many aren't scoped for years even when not in remission. I love the pillcam as it shows the entire small bowel in actual photos.
The Saint said he puts very little value on UGI/SBFT for Crohn's. He only relies upon it to look for stricture, he says it is not reliable to show inflammation.
04-09-2012, 05:56 PM   #27
izzi'smom
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MRI is far more costly than CT...and x-ray is less expensive than both. Not only is radiation exposure worse when they are young because ca has longer to develop, they are rapidly developing and radiation targets rapidly developing cells.

This isn't meant to freak anyone out...I am sure there are plenty of children who undergo multiple xrays and aren't ever affected. THe radiation exposure principle is ALARA...as low as reasonably achievable...and I think that in at-risk kids (our children have an increased ca risk due to their disease and the drugs used to treat it) it can't hurt to consider options that aren't know to cause potential harm...in other words I can't control the disease and her treatment is required to make her better...but if she can have an MRI instead of a CT I am potentially lessening her risk (and the risk of her offspring...remember females are born with all of their eggs and these, too are targeted as they only carry half of the genetic material as the rest of our cells do (considered "abnormal" by radiation)).

My mom was a DES baby (her mom took this drug to avoid miscarriage). There has been reported to be a link between DES and rare cervical/ovarian cancers. My mom had a hysterectomy after I was born and I have pre-cancerous cells also. I have ALSO heard they are researching a link between DES and autoimmune...my mom, myself, my brothers daughter, and my daughter all have autoimmune diseases. Because of this I am super sensitive to what I exposed myself to and what I expose my kids to.

Sorry, OP, completely hijacked your thread...
04-10-2012, 03:21 AM   #28
izzi'smom
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http://www.denverpost.com/nationworl...ago-linked-non


Found this article interesting regarding radiation.
04-10-2012, 07:57 AM   #29
Tesscorm
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Thanks Angie!!
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