Not celiac but gluten sensitive

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Regular Member

Date Joined Nov 2008
Total Posts : 360
   Posted 5/7/2009 12:46 PM (GMT -6)   
I was tested for celiac disease and the results were negative.  When I talked to the GI she told me that I was most likely gluten sensitive but that there were no tests for that.  It was interesting that she told me that when treating patients with Crohns or Colitis, most doctors are flying by the seat of their pants because there isn't a definitive treatment.  What works for one patient might not work with another.  She said that is why there are so many treatments out there.  She said there is only about 10 years of history with these new medicines and they still do not have perfect results   She said treatment for our disease is trial and error... so much for trying to figure this all out...
Presently on: 600 mg. Remicade every 4 weeks
                   Venofer infusion every 4 weeks
                   B12 every 4 weeks              
                   15 mg. Methotrexate/injection weekly
                   12 Asacol daily
                   10 mg. Celexa daily
                   Zofran as needed

Veteran Member

Date Joined Aug 2007
Total Posts : 2204
   Posted 5/7/2009 2:00 PM (GMT -6)   
Patients with IBD react differently because there are so many different contributing factors: heredity, diet, stress, chemical exposure, heavy metal toxicity, gut ecological imbalance, allergies, etc. I tested negative for celiac disease - both the blood test and by endoscopy - but I know from experience I feel better and am able to maintain remission when I eat gluten free. You cannot rely solely on your doctor's advice. It's up to you to research IBD, how a healthy digestive system operates and the things that can cause a downward spiral into disease. I highly recommend the book Optimal Digestion to learn everything you need to know about the digestive system and the cutting edge treatments for IBD, as well as other digestive maladies.

Your doctor is right. Many times it is trial and error to see what combination of therapies and lifestyle adjustments work for YOU. There is no magic bullet.
Diagnosed with ulcerative colitis spring 1999.
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.

Veteran Member

Date Joined Jun 2008
Total Posts : 2865
   Posted 5/7/2009 3:31 PM (GMT -6)   

I WANT a magic bullet!  Since there is none  - important to know what your stomach does and how it reacts to certain food, drinks, environment, etc.  I was diagnosed with IBS so many years ago so my symptoms are often digestive - not colon - there is a lot of difference. Not sure why God made us so complicated inside but we have to learn what our bodies do for us and to us.  I am almost 69 and have learned a lot but don't think I will live long enough to figure out UC!!


Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 
75mg. 6 MP added on 4/8/2009 - waiting for CBC and Prometheus tests
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.

Veteran Member

Date Joined Mar 2008
Total Posts : 2855
   Posted 5/7/2009 9:04 PM (GMT -6)   
I had a blood test that showed sensitivities, or intollerances, that were less than allergies. It was a blood test, got a very detailed report. Wheat was off the charts for me, but was not allergic.

Yes, we are complicated.

Try going without gluten for a week or so. I noticed the difference immediately, especially regarding any bloated, gassy feelings after I ate (although I still flared again 6 months later).
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; used prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ 

Veteran Member

Date Joined Aug 2007
Total Posts : 2204
   Posted 5/8/2009 11:19 AM (GMT -6)   
I know, Elaine. We all do. I remember when I was first diagnosed and was so desperately ill, wishing someone - anyone! - would tell me what to do. My first GI told me, "You have a chronic disease. You'll never be well. You'll take medication for the rest of your life until you get sick enough to have your colon removed." I finally realized help wasn't coming and it was up to me to be responsible for my own health. It took over two years of suffering, constant research, trials and experimentation before I got a handle on it. It can be a long, tough process, but it's so worth the return to health and an active life.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips.
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.

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