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Myooshka

What Is The Need For Official Diagnosis?

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Myself after being living with an undiagnosed illness for four years which is still undiagnosed, have a very poor view of the medical community so forgive me for being jaded but.......what are peoples opinions having to have an official "Celiac" diagnosis. My son is testing negative but he is having a lot of diarrhea and other problems so we are going gluten free and if it helps we will stick with it. Unless it will be of benefit for my two year old to be put under and biopsied I would rather just see if removing the gluten helps. Be darned if I am going to chase these doctor's meanwhile keeping my son sick on gluten just to get an official diagnosis from a medical doctor. So....besides having the official diagnosis,is there any other benefit to have the biopsy? Thanks and again I apologize but with friends and families experiences with doctors, I have all but lost faith in modern medicine.

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One of the pros of the biopsy is that they are looking for other things during the endoscopy - they could find Celiac, they could find something (or more than one something) else, or they could find Celiac + something else. Many "something elses" may not be found if not for the endoscopy.

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There are pros and cons to the biopsy. It is a procedure that will be preformed under sedation or a general anesthesia. It is rare to have an adverse event but things can happen. It is also possible to have a false negative on the biopsy. This is true for those of any age.

This is only my opinion but if it was my 2 year old I would give the diet a good very strict try for a bit and then if there are no improvements consult with the GI about the endo or more testing.

Do be well aware though that for an endo for celiac we MUST be eating gluten. If when you add back in gluten, (if you decide to try the diet first), you must do so for up to 3 months to have any chance of the endo being accurate. If your little one reacts when you add gluten back in that also is diagnostic as far as some doctors are concerned.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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There are pros and cons to the biopsy. It is a procedure that will be preformed under sedation or a general anesthesia. It is rare to have an adverse event but things can happen. It is also possible to have a false negative on the biopsy. This is true for those of any age.

This is only my opinion but if it was my 2 year old I would give the diet a good very strict try for a bit and then if there are no improvements consult with the GI about the endo or more testing.

Do be well aware though that for an endo for celiac we MUST be eating gluten. If when you add back in gluten, (if you decide to try the diet first), you must do so for up to 3 months to have any chance of the endo being accurate. If your little one reacts when you add gluten back in that also is diagnostic as far as some doctors are concerned.

Thanks for the replies. One thing I would be concerned about with the biopsy is also misdiagnosis, because isn't Celiac frequently misdiagnosed as Krohns?

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Thanks for the replies. One thing I would be concerned about with the biopsy is also misdiagnosis, because isn't Celiac frequently misdiagnosed as Krohns?

celiac disease and Crohns disease affect different parts of the bowel - and a biopsy would look very different under a microscope - although the symptoms may sometimes be similar.


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

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