Positive Celiac Biopsy/Negative Blood Test

[~sparky~]

I am brand new to all of this and am finding celiac disease quite daunting to say the least! I had a colonoscopy and a gastroscopy done. From the biopsies that were taken, my GI doctor confirmed that I have celiac disease. My doctor then ordered a blood test to confirm that I had the antigens (please forgive me if I am butchering the lingo, as I said, I am new to this!) celiac disease, but the blood test came back negative. He is still convinced I have celiac disease and wants me to continue with the wheat and gluten free diet. I have been wheat free and gluten free for about six weeks now, or as wheat/gluten free as a newbie can be - I am sure I make mistakes without knowing. My problem is that I continue to lose weight and have diarrhea several times a day, even if I only eat rice krispies with soy milk which I know is safe! I have been back to the doctor with my problem and he has ordered a CAT scan and prescribed something for the diarrhea.

Has anyone had a similar problem? Positive celiac biopsies and negative blood tests? Or continued intestinal problems with safe foods?

Thank you for any advice or help you can offer!

[dhiltonlittle]

what brand rice krispies? i don't think kellogg's are safe. that may be your problem!

[mushroom]

Hi Sparky. Yes, it is not unusual for a celiac blood test to show no antibodies after six weeks on a gluten free diet. The antibodies can leave the blood stream quite quickly. You are fortunate that the biopsy was positive because this is considered to be the "gold standard" of diagnosis.

As for your continuing symptoms, it is not uncommon to continue having symptoms for a while after going gluten free. You might tray taking some pepto bismul for your diarrhea, or I do note your doctor has prescribed something--has this helped? As evidenced by the biopsy, your small intestine is not healed so is still not digesting food and absorbing nutrients properly. You could try taking a gluten free probiotic to help promote healing in the gut. I note you are drinking soy milk so presume you are currently lactose intolerant. Some celiacs also have problems with soy, so you could try switching to an almond or hemp milk or a gluten free rice milk (not Rice Dream as it has some gluten in it). You could also try taking digestive enzymes to help the digestive process. Often the pancreas has a low output of digestive enzymes that contribute to our digestive problems.

It is also possible that you have not yet eliminated all trace sources of gluten, such as in personal care products, shampoo and conditioner, toothpaste, lip gloss and chapstick, hand lotion. Be scrupulous in washing your hands before touching food. And if you are living with a shared kitchen (i.e., there is still gluten in your kitchen) you could be getting cross-contamination. You have probably read on here about replacing cookware that cannot be rid of gluten, and buying a new toaster and colander. Work hard on eliminating every possible source of gluten and on your label reading. Here is a list of foods that may contain gluten:

bouillon cubes

brown rice syrup

candy

chips/potato chips

cold cuts, hot dogs, salami, sausage

communion wafers

French fries

gravy

imitation fish

matzo

rice mixes

salad dressings

sauces

seasoned tortilla chips

self-basting turkey

soups

soy sauce

vegetables in sauce

Any of the following words on food labels may mean that a grain containing gluten has been used

* stabilizer

* starch

* flavoring

* emulsifier

* hydrolyzed

* plant proteins

Keep up the good work and let us know again how you are doing and how else we can help.

[Lisa]

Hey Sparky! Welcome to the forum. You have found a great place.

I would go over your diet, one product at a time and make sure that everything is gluten free. Kellogg Rice Krispies are not gluten free. And as mushroom mentioned, Rice Dream Soy Milk does have a low level of gluten, that some people with Celiac can be sensitive too.

Keep a food diary and that will help you identify an issue.

Please run by any issue you may have. We have lots of peeps who have been where you are now. Take advantage of their experience.

It will get better, promise.