Going Crazy-Need Help Please
Posted 26 February 2012 - 09:23 AM
Also, when I decided I'd make an appt for gastro doctor, I called back to see if I should start eating gluten free. He told me I should. But now I am confused from my research. Can I eat gluten free before the biopsy? Not sure if it's the blood test that will get incorrect results from gluten free eating, or the biopsy.
Sorry, I am very overwhelmed and confused. Waiting until March 5th for appointment with gastro doctor is like an eternity. I am going CRAZY. And I want to feel better. NOW.
Posted 26 February 2012 - 11:10 AM
According to what I just saw on this other thread: http://www.celiac.co...e-on-celiaccom/ it's possible to get a false negative on the blood test, but if it's positive then it's positive. If the dr. will diagnose you based on the blood test without the biopsy, that might be the way to go. In the end it's your decision, though.
Posted 26 February 2012 - 02:11 PM
Posted 26 February 2012 - 03:03 PM
It is entirely your choice whether or not you have the biopsy, but if you do decide to have it you should continue eating gluten up until the time of the test to attempt to avoid a false negative. As a pp said, there is a 20% error rate which produces false negatives, either because the damage is not yet severe enough or not sufficiently widespread and is missed, or the doctor did not take enough samples, or the pathologist did not read it correctly.
If I were you and your doctor is willing to diagnose based on the blood test results, I think I would skip the biopsy for now (although there is really nothing much to be afraid of with this procedure - it is pretty routine and is done under sedation, not anesthesia). If your symptoms do not resolve on the diet it is a procedure that can always be done at a later stage, as other conditions which might be looked for through the scope do not require you to be eating gluten.
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
"Life is not weathering the storm; it is learning to dance in the rain"
"Whatever the question, the answer is always chocolate." Nigella Lawson
Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose
Celiac.com - Celiac Disease Board Moderator
Posted 26 February 2012 - 03:37 PM
Going gluten-free seems like the best next step if you are certain you don't want an endo. I've gone back in forth about the need for my initial endoscope. Over the past few years I thought maybe it would have been enough to go gluten-free after the positive blood work. I now am grateful that I went ahead with the initial scope and a follow up a year later as the first test confirmed the celiac dx (so never gave a second thought to the need to be 100% gluten-free). The subsequent scope was helpful in putting the rest of my puzzle together as the damage to my digestive track became worse after 13 months of complete adherence to a gluten-free diet -- eventually I found that I was intolerant of many foods.
I likely would have figured this out without the scopes, but it was part of solving the puzzle for me.
Welcome and Good Luck to you!
PS...you do need to be eating gluten up until the endoscopy is complete should you decide to have one.
Undiagnosed Celiac Disease ~ 43 years
3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE -- probable cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
Celiac.com - Celiac Disease Board Moderator
Posted 27 February 2012 - 04:37 PM
Posted 28 February 2012 - 09:53 PM
0 user(s) are reading this topic
0 members, 0 guests, 0 anonymous users