By Angela Petrie
A common situation:
I got a positive blood test and on the advice of my doctor starting eating gluten free. I feel great and now am faced with ‘glutening’ myself in order to have a biopsy. Is it worth it? How long do I have to eat gluten for before the biopsy is scheduled?
My child had a positive blood test and was not biopsied. Now we are in our teen years and she doesn’t believe she has celiac disease. She doesn’t feel sick when she eats gluten. I don’t have that gold standard biopsy to prove to her that she does have it. Help!
I heard that eating gluten free can help you feel better. I was amazed by how the ‘mind fog’ lifted, my skin cleared up, and my stomach upset went away. I don’t think I have celiac disease, I think I am gluten intolerant. Is it okay if I cheat once in awhile? How long would I have to gluten myself to get a positive blood test and/or biopsy?
Here is what Dr. Joseph Murray, Mayo Clinic had to say in a question/answer panel:
Question: someone I know has been eating gluten free for years but never got a diagnosis of celiac disease. Should this person get a biopsy? How long do they need to consume gluten before the biopsy? Is it worth it for an adult or a child?
Answer: this is a very typical circumstance he sees in his clinic. He will ask the patient: how are you feeling? Would you be willing to go back to using gluten, being 4-5 slices of bread per day for 4 weeks, in order to have an endoscopy?
If the answer is yes, yet no symptoms develop over the 4 weeks then he tests the patient’s blood to see the TTG levels. He will not biopsy until the TTg levels are up as the patient may not have consumed long enough to cause mucosal damage. It could take up to six months before the patient shows sufficient blood levels to do the biopsy.
If the answer is no, I don’t want to get gravely ill and wait for my mucosal lining to heal again he suggested patients could get a genetic test to see if you even carry the necessary gene to have celiac disease. The problem with this is genetic testing is expensive, you must use a credible lab and have a qualified physician to explain the results to you.
For children Dr. Murray has a similar approach. He first establishes that the child is on a strict gluten free diet and will do a blood test to see the TTg level. He starts the patient on 1 slice of bread per day. If the child has symptoms he will biopsy fairly quickly.
If the child tolerates the gluten well then the child continues to injest gluten and follows with blood tests. Dr. Murray stated that it could take up to 1-3 years before a child relapses for a biopsy.
Another question of interest was why a blood test is not enough to diagnose celiac disease. His response was that a strict GFD is hard to follow and expensive. One does not want to subject oneself to that form of lifestyle unnecessarily. Also, there is a risk of lab errors.
He said that if the TTg is ‘super high’ then it is almost a 100% chance the patient has celiac disease and no biopsy is needed. If the numbers are only slightly off normal then it is harder to know for sure and a biopsy should be done.
Angela Petrie is a gluten free consultant. She can be reached at 250-863-8123 or check out her website at www.glutenfreehelp.ca