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What Are The Tests I Should Ask For?


KimmyJ

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KimmyJ Rookie

I had positive blood work for Celiac and a positive skin biopsy for DH back in Oct. Unfortunately, I didn't get any follow-up care because I was out of country, and I suppose because the doctor didn't really know much about Celiac. Anyhow, I am finally back home and I want to find a doctor who is a little more knowlegeable about Celiac, or at least willing to learn, and in order t be prepared, I want to go in knowing what to ask for as far as tests are concerned. Can someone please list for me the usual tests that are conducted for Celiac patients? Thanks!


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tom Contributor

Egads I wish I knew who to credit for this quote/info, but I just copied it over from another thread a couple days ago.

He or she wrote, in response to a similar inquiry:

"You should have a bone density scan done and also get checked for anemia if you haven't already. It would be helpful if your doctor would check your folate, B12 and calcium levels also."

Good luck! :)

Lisa Mentor

Since your tests produced a diagnosis for Celiac you will want to check to see if you vitamin and mineral levels. It used to be called an Executive Panel or full Metabolic Panel.

I have found that every new doctor that I have been to, wants to run their own test to verify what a previous doctor told you. What a waste of money. There is no need for diagnostic testing for Celiac.

MDRB Explorer

Have you gone gluten free yet? If so, are you still having symptoms.

You should get your antibody and vitamin levels and checked.

Also you might need to have an endoscopy, but you will need to be eating gluten to get this done.

Gastroenterologists are usually the best doctors to see about celiacs as they are usually the ones to diagnose it. Ask your regular doctor for the name of a good gastroenterologist who specializes in celiacs.

Good luck.

KimmyJ Rookie

I have been gluten-free ever since my diagnosis back in mid-October. I have absolutely no intention of going back to eating gluten just so some doctor can get a biopsy. Not at all worth it. I do still have some symptoms, but only when I accidentally get glutened. Thanks for the help everyone!

happygirl Collaborator

from: Open Original Shared Link

Q: What follow-up care should I have after diagnosis?

Patients need follow-up after diagnosis. Symptoms that persist after commencing the diet require elucidation and appropriate treatment. Bone density should be measured because osteopenia and osteoporosis are common complications of celiac disease. Iron, folic acid, calcium and certain vitamins should be measured as there is often malabsorption of these nutrients. Certain vitamins and minerals may need to be administered, but the patient should be under a physician's guidance as to how much should be taken and for how long. Consultation with a dietitian experienced with the gluten-free diet is recommended. Many patients, especially the elderly, require a Pneumovax vaccination because hyposplenism and a resultant increased risk of pneumococcal infection is common.

Blood tests are used to monitor adherence to the gluten-free diet, as antibody levels should normalize with time. Patients with celiac disease should have at least one follow-up biopsy to confirm their response to the diet and the normalization of the biopsy sample. Patients who are non-responders, or whose clinical situation is somewhat confusing, may need more repeated biopsies at intervals

Patients who have persistent diarrhea after starting a gluten-free diet require a more intensive evaluation to exclude other food intolerances, colitis, bacterial overgrowth or pancreatic insufficiency. All these can be adequately treated if correctly diagnosed.

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      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
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      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
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