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How likely is it that my blood test was a false negative?

t1diabeticuk
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t1diabeticuk Newbie
t1diabeticuk
Posted

I've (21 years old) been struggling with celiac symptoms for many years (fatigue, brain fog, bloating, loose stools, hair loss etc etc). 3 years ago I had a negative IgA blood test and the doctor told me that this negative meant there was no way I had celiac disease. 3 years of ignorantly eating gluten passed and my symptoms worsened. Then, 3 months ago I was at breaking point and as a last hope, I cut out gluten from my diet. 

Within 2 days my loose stools which were ever-present for 4 years or so, became healthy bowel movements. There has also been a gradual reduction of my other symptoms in the last 3 months (around 40% but I here that recovery takes 1-2 years). So, this has made me highly suspicious that I do in fact have celiacs but in all honesty I don't have a clue which is why I'm here!

Other things which make me think celiac is that I'm type 1 diabetic (autoimmune condition) and have had chronically low b12,b9 and vit D for no apparent reason for years. Please let me know what you think and if you have any advice for what I should do moving forward. 

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Wheatwacked Veteran
Wheatwacked
Posted
7 hours ago, t1diabeticuk said:

there was no way I had celiac disease.

Famous last words. Follow his advice and stay sick or do GFD without antagonizing your doctor and see what happens. You still need the doctor for your TD1. Eventually he may notice the improvement and ask what you are doing to get better. Doctors generally don't care what you eat. Their response to me when I say I am gluten free is "well, everyone has preferences".

Just a thought, but could untreated Celiac Disease have caused B1 deficiency that impaired insulin production and eventual failure of the pancreas to produce insulin? I sometimes wonder if TD is brought on by maternal untreated celiac disease. There's a rabbit hole. Around 40% of the population have the genes for celiac disease but only 1% are diagnosed with celiac disease. What does that 39% do?

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Benfotiamine, a thiamine derivative, have been demonstrated in vitro to counteract the damaging effects of hyperglycemia on cultured vascular cells ...The relationship between thiamine and diabetes mellitus was discussed. Thiamine definitively has a role in the diabetic endothelial vascular diseases (micro and macroangiopathy), lipid profile, retinopathy, nephropathy, cardiopathy, and neuropathy...Thiamine deficiency leads to a marked impairment in insulin synthesis and secretion    The Impact of Thiamine Treatment in the Diabetes Mellitus

 

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t1diabeticuk Newbie
t1diabeticuk
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Posted
3 hours ago, Wheatwacked said:

Famous last words. Follow his advice and stay sick or do GFD without antagonizing your doctor and see what happens. You still need the doctor for your TD1. Eventually he may notice the improvement and ask what you are doing to get better. Doctors generally don't care what you eat. Their response to me when I say I am gluten free is "well, everyone has preferences".

Just a thought, but could untreated Celiac Disease have caused B1 deficiency that impaired insulin production and eventual failure of the pancreas to produce insulin? I sometimes wonder if TD is brought on by maternal untreated celiac disease. There's a rabbit hole. Around 40% of the population have the genes for celiac disease but only 1% are diagnosed with celiac disease. What does that 39% do?

 

Thanks for the response. I think I'll stick with the gluten free diet for now and continue to reap the rewards. I'm going to do a genetic test which isn't perfect but will give me a better indication and also track my b12,vitD and b9 through this journey. If they rise then I think it would be safe to say that I have celiacs, don't you think? 

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frieze Community Regular
frieze
Posted

Be VERY careful to track you blood sugars, they may fall, sanding you done the rabbit hole of  hypo

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