Doctor In Maryland (dc Metro)

[aeg]

I have felt sick for years, but recently ended up the emergency room because of severe dehydration due to diarrhea. I went to a doctor who basically told me that I have ibs and that I would have to live with it. I refused to believe this and started to do an elimination diet. My husband was convinced that wheat was my problem. I started eliminating wheat, and although I felt better, the special wheat-free (but not gluten-free) items made me feel badly. So I eliminated all gluten and after five weeks I felt wonderful. I realized that there were a lot of symptoms that I had been ignoring – the constant heartburn, the bloated stomach, the constipation and diarrhea – avoiding gluten had made all the symptoms completely disappear!

I went back to the doctor I had originally went to and was told that I needed to go back to eating gluten to get an accurate test for celiac disease (Is this true?). The doctor spent basically three minutes with me and didn’t seem to believe that I was feeling better.

I have started back with gluten for two days and all my symptoms have returned. I thought that I would be happy to eat all the foods I hadn’t eaten in so long, but I feel so badly that I wish I could just go back to avoiding them. I really don’t want to return to the same doctor, but have no idea how to find some one who is near me who knows and understands gluten intolerance/celiac disease.

Please let me know if there is a great doctor in the Maryland/Washington DC metro area!

[Davids]

I have felt sick for years, but recently ended up the emergency room because of severe dehydration due to diarrhea. I went to a doctor who basically told me that I have ibs and that I would have to live with it. I refused to believe this and started to do an elimination diet. My husband was convinced that wheat was my problem. I started eliminating wheat, and although I felt better, the special wheat-free (but not gluten-free) items made me feel badly. So I eliminated all gluten and after five weeks I felt wonderful. I realized that there were a lot of symptoms that I had been ignoring – the constant heartburn, the bloated stomach, the constipation and diarrhea – avoiding gluten had made all the symptoms completely disappear!

I went back to the doctor I had originally went to and was told that I needed to go back to eating gluten to get an accurate test for celiac disease (Is this true?). The doctor spent basically three minutes with me and didn’t seem to believe that I was feeling better.

I have started back with gluten for two days and all my symptoms have returned. I thought that I would be happy to eat all the foods I hadn’t eaten in so long, but I feel so badly that I wish I could just go back to avoiding them. I really don’t want to return to the same doctor, but have no idea how to find some one who is near me who knows and understands gluten intolerance/celiac disease.

Please let me know if there is a great doctor in the Maryland/Washington DC metro area!

Hello,

I know what you are going through. I think my daughter has Celiac but I'm not sure yet. So far she has missed 3 weeks of school.

We have been to her family doctor enough times that she finally told us to go to a specialist (A I Dupont Children's Hospital in Delaware)

The Dupont hospital cannot see her until November. So we called Johns Hopkins. They ordered more tests. I got tired of waiting for the tset results so I took her to Johns Hopkins emergency room last night.

They told me that there was nothing "Serious" wrong with her. They said to come back Monday when the GI specialist would be in.

So bacically we are back to where we started. She just started private school this year and I see no way for her to catch up.

Hopefully someone on this board will know of a compentent doctor in the Maryland area. Good luck.

David

[happygirl]

Dr. Alessio Fasano is one of the LEADING Celiac experts and researchers in America, and around the world. He is at the University of Maryland, Baltimore, and has his own Celiac branch. www.celiaccenter.org. I would highly recommend him, from everything I have heard and read about him and his research.

Unfortunately, most doctors do not know much about Celiac. Your experience is common; we are often told it is IBS and are brushed aside. I'm sorry you have to go through this. But, if you want the traditional bloodwork test (and potentially, the subsequent biopsy of your intestines, which is considered "the gold standard" by the medical community), you must be consuming gluten for a more extended period of time. however, some people just go gluten free without a diagnosis. Some people are not Celiacs, but just gluten intolerant (meaning they are negative on the tests, but still, cannot tolerate gluten and have similar gluten reactions), and this will not necessarily show up on bloodwork/biopsy. It is a personal decision. An alternative method (although it works for MANY, it is not widely accepted by the vast majority of physcians) is enterolab. You test through a stool sample and you don't have to be eating gluten. But, you may run into resisitance from the medical community.

So, based on all of that, it really is a personal decision. Many choose the "traditional" route and only proceed down a non-traditional (enterolab or just elimination diet/with no diagnosis) afterwards. Depends on multiple factors (your need for a diagnosis/definitive answers to help you stay on the diet/to make it easier with doctors later on, your symptoms, your doctor, your finances, etc.)

Hope this helps some. Call Dr. Fasano's office today...at least you can schedule an appt....you can always change your mind!