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Prediagnosis And Frustrated!

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Hello All, 


My name is Leah and I am new to the forum.  I think this post is partly seeking advice and partly to vent so I'm sorry if it comes off as a bit of a rant.  


2 years ago I was diagnosed with pernicious anaemia.  My symptoms were fatigue, brain fog, and a ridiculously low b12 level.  I have been on b12 injections monthly since.  It seemed to help with the symptoms.  I have been lactose intolerant for nearly 10 years and have had GI symptoms off and on my whole adult life.  From April of 2013 to October 2013 I was eating a gluten free diet for a cleanse I read about and was symptom free.  In October of 2013 I started eating gluten again and began experiencing extremely severe stomach pain, diarrhoea, fatigue, and a foggy brain again.  Initially the pain was radiating towards my back under my shoulder blade.  I was tested for pancreatitus and blood work that would indicate an ulcer - both negative.  I have been prescribed a variety of drugs for reflux and diarrhoea with no improvement.  


I was scheduled for a colonoscopy in mid december and was told by my doctor that I could begin eating gluten free and that it wouldn't affect any tests for celiac and that she was sure I didn't have celiac anyway.  Upon speaking to the Gastroenterologist prior to my colonoscopy I was told that I must continue to eat gluten until he could have me in for an endoscopy mid February.  I also had blood work done for gluten antibodies in December when I had my colonoscopy.  Again both negative.  


I am eating a gluten diet now and have all the same symptoms I started with in October with nothing really providing any relief.  The pain and diarrhoea have kept me off work since mid October.  I see my doctor for results and follow up appointments to complete paperwork for my work benefits and she keeps insisting that I have IBS and to make plans for when I go gluten-free and continue to have symptoms.  She's so convinced and so smug.  I've done reading online about IBS and Celiac and while they do share some symptoms, my doctor is convinced that because I'm not textbook Celiac that I have IBS which is basically a way to say undiagnosed GI issues.  


When I read about IBS online it says that there is some relief of abdominal pain after BM and I don't get that relief.  It speaks of bloating and other things I don't experience.  


I will admit that my blood work isn't textbook celiac but so many of the other symptoms I'm having are things I've read on this forum by people who have been diagnosed.  I'm worried about what will happen with my endoscopy in February and I'm constantly reading and researching online because I'm learning that my doctor is kind of old school and doesn't really have a clue when it comes to celiac.  


Thanks so much for 'listening'.  I feel better even now after stabbing this out on my keyboard into cyber space.  At this point I'm sure I am where so many of you have been....I just want a diagnosis.  

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When you had celiac antibody tests in December...how long had you been consistently ingesting (daily) gluten?


Do you know which tests were run and the exact results?


Have other nutrients been tested aside from B12?


For now...make sure you are ingesting gluten EACH day until the endoscopy...a slice of glutinous bread per day is plenty.


Also, I'd strongly recommend having the complete antibody panel run on the same day as the endoscopy...as you don't want to have to go through another challenge down the road.


Since you already know that you improved by removal of gluten for six months...there is no reason to continue to eat it once testing is complete.  Make sure you learn how to remove all sources of gluten from your diet.


This is a frustrating process...hang in there :)

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