Posted 10/28/2011 1:53 AM (GMT -8)
Thanks Beth...I was dx celiac three years ago...like you I was disabled beyond beyond....I couldn't figure it out...noticed a lot of ALL of the same things you and Daisy said. I too corn, soy,potatos, some GF grains, some beans and not others, some nuts and not others....I felt NUTS! My blood test was negative also , however I was so deathly ill I was being sent to infectious disease, neurology, cancer I cannot begin to tell you....I WAS dying, my mom would visit every three months and I was sicker each time, she even said she thought I would die. It broke her heart. FINALLY of all places and for a differenr reason I was sent to a GI doctor for a colonoscopy and because I had all boxes checked he decided it would be good to do an upper endoscopy also. ALAS~ at 730 as I was about to go into a test for a gastric emptying he called and my biopsy sugested I had celieac. He told me not to change my diet and sent me for the blood work. NEGATIVE! Yet the Villi in my biopsy were gone!He0 advised a GF diet and within two weeks I felt 20 percent better. I mean I was on my death bed, so 20 percent was huge...I didn't want to say anything to anyone yet, as it had been three long years of this deathly ill...at three weeks I was still holding and I was still learning of all the gluten in everything. I had eliminated a lot prior to dx with some improvement, but hard to tell often times. Celiac vs G intollerance is a big differance. Daisy, I do not think you would get that ill if it were not cileaeiac, yet some celiacs get dx much earler....I think those of us who get as ill as Daisy and I...its like NOT a question to STAY away. It is hard and others do not understand. I get cross contamination and I still think I must be nuts. So TY Daisy...
I was told by my GI that Celiac can have some GI symptoms and oth ers can have virtually every type of symptom including pscycotic... He saved my life. I went off dairy as I heard the villi heal quicker and then some celiacs can go back on after a year. WELL NOT ME... it can take two to three years to heal the intestanes. I have had two other uppers and one lower endoscopy since dx. after the first year my biopsys came back good, but still a bit bad, he also indicated he had no doubt that their were pockets that were not healed. He and any good gi knows or any good pcp knows blood work being negative means nothing. the gold standard is the upper endooscopy. Even then the biopsys could be of areas that look ok isnt definative...it can just mean the areas were not biopsyed and if it hasn't progressed as far this is more likely to come back negative.
I have prob w so many foods and I have heard it is not uncommon with celiac. about lechithin is that it...the stuff made from soy.... I cannot do soy or lechitin.....they make it from other sources if it is the same thing as I am thinking....sorry aobut spelling....I also have a TBI and a new computer that is as sesitive as me...I wish you all well....Oh I weighed 220 and wasn't eating i was so sick....the weight started melting off....I always read celicic and w the gi probs and I have them too, but other things were more pronounced I was so sick. I lost75 pounds....in a year....
I have a question do any of you know what your CRP's were....Mine were in the 20s....they slowly came down over two years to less than one... That was the only blood work that I had to o on...were normal so reg docs said i was fine....BS...mine have been going up again and I have put on 25 pounds and feeling bad. differet bad then gluten, but now up to 9 CRP and very very ill...does anyone have an idea what Im talking about....thanks oh and I have gastroperisis and IBS, not unusual for Celieac. My GI doc early on told me I will prob never feel "well". I have a lot of malabsorbtion issures I go in and out of D and iron...better over time, but wondering whats up cuz really sick...any info would be helpful...My GI doc said that CRPs are more sesitive to GI issues than ESR's eventhough there both nonspicific...