nontraditional tests for active Crohn's

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njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 7/10/2009 8:59 AM (GMT -7)   
My daughter has NO symptoms and her CRP and sed rate are fine but we know her Crohn's is active because of the colonoscopy.
 
She is starting LDN soon, so her doc, who works in "integrated medicine," seeks other ways to measure how she is doing--to avoid more invasive tests like SBFT and colonoscopy.
 
So he has ordered the following tests before she starts LDN:
 
1. intestinal permeability test (she will drink a solution and then collect urine at intervals to check for "leaky gut" syndrome
2. serum level of zinc
3. soluble fibrin monometer
4. prothrombin monometer
5. thrombin antithrombin
 
Any of these tests might be abnormal in somebody with active Crohn's, but normal if the condition is truly in remission.
 
Anybody had any of these tests?

AMinNJ
Regular Member


Date Joined Feb 2009
Total Posts : 40
   Posted 7/10/2009 6:11 PM (GMT -7)   

I have never had any of these tests, but I live in NJ too and was wondering who your daughter's doctor is? He/she sounds very progressive and smart about Crohn's! I have been having trouble finding a GI doc that I have much confidence in and would love a recommendation. Care to share? :)


Angela, age 43
dx Ulcerative Proctitis 2008 after colonoscopy
dx Crohn's 2009 after small capsule endoscopy
Symptoms on and off for more than 10 years
Currently taking no medications
Gluten-free, dairy-free, low sugar diet
VSL/probiotics, MorEPA, B Vitamins, Folic acid, Vit C, Vit D, Turmeric, Ginger, Selenium, Mushroom


janicea
Regular Member


Date Joined Feb 2009
Total Posts : 350
   Posted 7/10/2009 9:10 PM (GMT -7)   
hey I'm in NJ too. Where in NJ are you guys?? I get my LDN from both my GI and my regular MD. Your daughters doc sounds cool. As far as the LDN goes, I felt like a totally different person within about 10 days energywise. It was and is amazing for me. I had a difficult sleep adjustment though if your daughter has sleep issues, working up to the dose worked like a charm for me. I live in princeton and get mine (I have the cream now, because it's nicer than the pills) at hopewell compounding pharmacy, which is luckily only about 8 miles from me.
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Using silver sulfadiazine on Pyoderma . B-12 shots. Juicing veggies!

Post Edited (janicea) : 7/10/2009 10:13:10 PM (GMT-6)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/11/2009 7:19 AM (GMT -7)   
The only test I think I know is the Prothrombin. That is a test that measures how long it takes your blood to clot. But the others I havent heard of. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 7/11/2009 5:32 PM (GMT -7)   

We went to see Dr. Leopold Galland in NY, who is not a gastroenterologist, but an internal medicine doc and nutritionist who happens to have Crohn's patients who have tried/are trying nontradtional therapies like worm therapy, LDN, SCD, antifungal therapy, and mastic gum. 

He doesn't accept insurance, but my daughter's insurance will pay about 70% of the out-of-network fee. My daughter first went to him in 2006, and he was the first doctor to think of checking her vitamin D and ferritin/serum iron/TSAT/TIBC - both were low. He has published books like Power Healing and is well known and respected. 

We haven't seen him since 2006, but this time my daughter went to him mainly to get started on LDN, which he was more than willing to prescribe. She had asked her GI in college twice for an LDN prescription, but he kept blowing her off, so now that she is back in NJ/NY she figured Dr. Galland would be more open, and he was. He is going to try tracking her progress on LDN therapy by seeing whether any changes show up in the noninvasive tests I mentioned.  


AMinNJ
Regular Member


Date Joined Feb 2009
Total Posts : 40
   Posted 7/11/2009 7:39 PM (GMT -7)   
Thanks for the information about Dr. Galland. I think I will look into getting an appointment with him. By the way, I'm in Freehold, Monmouth County.

I had to push my doctor for blood tests for Vitamin D, B12, Folate, and ferritin because I read these can be low in Crohn's patients due to malabsorption. He finally relented and sure enough, mine were very low. Why don't GI doctors check these things? Shouldn't that be standard? Very frustrating!

Can I ask another question... about your daughter's colonoscopy... you wrote that she is having no symptoms right now (I am not having symptoms either, just slight LRQ pain) but her colonoscopy showed active Crohn's... what did it show? My last colonoscopy showed small shallow ulcers in the rectum and terminal ileum, but I was having symptoms at the time. Were your daughter's positive findings grossly observed or discovered on biopsy?

Thanks for all of your help, what a great resource you are. Please keep us posted on the results of your daughter's tests and her experience with LDN.
Angela, age 43
dx Ulcerative Proctitis 2008 after colonoscopy
dx Crohn's 2009 after small capsule endoscopy
Symptoms on and off for more than 10 years
Currently taking no medications
Gluten-free, dairy-free, low sugar diet
VSL/probiotics, MorEPA, B Vitamins, Folic acid, Vit C, Vit D, Turmeric, Ginger, Selenium, Mushroom


AMinNJ
Regular Member


Date Joined Feb 2009
Total Posts : 40
   Posted 7/11/2009 7:41 PM (GMT -7)   
I should have mentioned my sed rate was also fine (had to beg for that test, too), but I haven't had CRP tested.
Angela, age 43
dx Ulcerative Proctitis 2008 after colonoscopy
dx Crohn's 2009 after small capsule endoscopy
Symptoms on and off for more than 10 years
Currently taking no medications
Gluten-free, dairy-free, low sugar diet
VSL/probiotics, MorEPA, B Vitamins, Folic acid, Vit C, Vit D, Turmeric, Ginger, Selenium, Mushroom


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 7/12/2009 4:50 PM (GMT -7)   
The colonoscopy showed active inflammation in two places, clearly visible, and ulceration.  

LauryLu
Regular Member


Date Joined Dec 2008
Total Posts : 75
   Posted 7/19/2009 9:35 AM (GMT -7)   
I am in NJ too (Wall/Manasquan area). Who is your local GI at the moment? I too am very interested in seeing this Internal Medical Dr in NY! Thanks for the tip!
26 yo Female, Crohn's
Diagnosed at 6...symptoms at age 2
Bal-resection 1998
history of steroids, antibiotics, Asacol, Prilosec, Pentasa, 6mp Imuran, Remicade, Humira...
Humira 12/08 and stopped after 3rd dose
LDN 3.5mg Feb-July 09
starting Humira Again


Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 7/21/2009 6:46 PM (GMT -7)   
I was diagnosed with CD in Sep of 2007 after 8 weeks of bloody diarrhea. Even then, at my worst, I never had any blood work reveal a single thing. It's still like that. After my colonoscopy my rectum was the primary location of inflammation. Now we treat it symptomatically. It's kind of frustrating, but I guess that's the way it is. As a side note, I tried LDN (4.5mg) for 3 months and thought I was doing better, but in the end it didn't really help me. I think it was the placebo effect for me. Good luck with it!
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Canasa (1000mg): 1 suppository nightly
6MP - currently at 50mg working my way up......

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