Dr Has Me Confused

[missmommy]

i went to meet my new gi today because of pain in my lower stomach. two weeks ago i had an abdominal ultrasound and they saw polyps in gallbladder. but my doc also wanted to send me to a gi to get checked out.

im not really sure how much the guy knows about celiac, but he wants to biopsy my small intestine next week (i have been gluten-free for almost a year and half) he said it is possible for my body to still be acting like im ingesting gluten. i have never heard of this, i think he called it celiac reflux or something that sounded like that. he said my body might still be attacking its self. sorry if im not explaining it that well. he had me totally confused, he was talking real quick. he also said he wants to do it as soon as possible, like in 2 days. (im not going till next week though, i wanted to stall) he also wants me to go get my colonoscopy soon after and something else but i already forgot what it was. he said if he finds my small intestine inflamed he will put me on steroids and proboinics (i not sure i have that right).

im confused, so i was hoping some of you could tell me if this is routine celiac stuff?? i dont want to get stuff done that doesnt have to be done, or by someone who may not really know about celiac. and i cant just get anther dr, its not that easy, we are military and it takes forever! i would need to start all over, go back to my regular dr get new referal, wait at least another month to meet new gi.

[ShayFL]

I think this is what he was talking about:

What is refractory celiac disease?

Refractory celiac disease is a rare condition in which the symptoms of celiac disease (and the loss of villi) do not improve despite many months of a strict gluten free diet. Before making a diagnosis of refractory celiac disease it is important to exclude complications of celiac disease and other co-existing conditions that can produce similar symptoms. It is believed by many knowledgeable physicians that refractory celiac disease is a malignant condition, that is, it is a cancer.

What is the treatment for refractory celiac disease?

The treatment of refractory celiac disease is first to make sure that all gluten is eliminated from the diet. If there still is no improvement, medications are used. Corticosteroids such as prednisone have been used successfully in treating some patients with refractory celiac disease. Immuno-suppressive drugs (medications that suppress a person's immune system) such as azathioprine and cyclosporine also have been used. (These drugs also are used in treating some types of cancer.) Corticosteroids and immunosuppressive drugs are potent medications with potentially serious side effects. Many patients with refractory celiac disease are malnourished and have weakened immune systems, and corticosteroids and immunosuppressive agents can further increase their risk of serious infections. Thus doctors experienced with treating celiac disease should monitor treatment of refractory celiac disease.

Unfortunately in some patients with refractory celiac disease, malabsorption and malnutrition progress despite drugs. In these patients the intravenous route is the only way to deliver nutrition. Total parenteral nutrition (TPN) is a way of delivering calories, carbohydrates, amino acids, and fat in liquid solutions via a catheter that has been inserted and secured into a vein.

[missmommy]

i read the response with my husband.... i hope thats not what my problem is! that is scary stuff!!!

but if its rare, hopefully i just have some common easliy fixed thing i mean if i gotta wish for a gut problem, that aint the one i want

[Lisa]

It might be a good idea to retest a Celiac Blood Panel to make sure that you are not getting any hidden gluten into your diet.

Refractory Sprue is indeed rare. It would not be unusual for someone to take up to a couple years to heal. And, also for some, an occassional glutening could set healing back for a good while.

It's good that your doctor is trying to rule out other concerns.

[Jaimepsalm63]

Your doctor sounds very proactive, which is a good thing. Most doctors....ok, the ones I've run into as of late, try to pass everything off to IBS (which makes me want to scream). Go with it. It's better to have the knowledge that these tests can give you instead of not knowing anything. If all else fails, it confirms or rules out how well your diet is going and the healing process.

Blessings,

Jaime