Asymptomatic and confused

[Jwrig002]

I was diagnosed late 2019 and am completely asymptomatic.  I started the gluten free diet as directed and felt absolutely no difference.  I reintroduced gluten and with the exception of slight bowel movement changes (mostly just with beer consumption), no noticeable difference.  Since the disease destroys your villa making it hard for your body to absorb nutrients, shouldn't I have low vitamin levels?  A recent test showed normal levels. I am struggling to understand the point of a gluten free diet. I know there is potentially an increased risk of intestinal cancer, but there are also studies to show that may not actually be the case. Can someone point me to informative articles on why I should continue a gluten free diet when I have no symptoms and no vitamin deficiencies?

[GFinDC]

Hi Jwrig002,

Welcome to the forum!

You are asking perfectly reasonable questions for someone who isn't familiar with celiac disease.  Some things to know are: celiac disease is an AI (auto-immune condition), the damage it causes tends to increase over untreated time, and continued damage can lead to other AI conditions developing.  Also, people with ongoing gut damage tend to become sensitized to many different foods.  So while you may have a reaction (or not) to wheat, rye and barley now, you can also develop sensitivity to other foods and end up not being able to eat them.

Everyone has their own immune system, and they can react differently.  In some people the immune system attacks the skin primarily and causes a very itchy rash called DH (dermatitis herpetiformis).  Other people get gut damage or nerve and brain damage or liver or joint damage etc...  Celiac can attack any part of the body, not just the gut.

If you do not go gluten-free, you will most likely develop gut symptoms at some point, or your current symptoms will worsen.  While the damage is light your symptoms may not be bad.  But any symptoms are an indication that damage is occurring.  That's bad because we only get one body on this earth to live in.

I encourage you to go gluten-free now while you still have mild symptoms.  Things can only progress to the worse if you don't go gluten-free.

All this sounds a little negative I suppose.  But really celiac disease is not too bad compared to all other AI conditions where they don't know the trigger and can only treat it with expensive and dangerous drugs.  Our best treatment is avoiding all gluten in the diet.  So food instead of medicines.  That's a great alternative to a lifetime of drugs for an AI condition.

Edited June 11, 2020 by GFinDC

[cyclinglady]

Like you, I had no noticeable symptoms.  I was anemic, but doctors always blamed A genetic anemia.  I actually had a second anemia — iron-deficiency anemia.  My body learned to adapt over the years until I hit menopause and then I became very anemic which was concerning for my doctors.  Finally, I was diagnosed with celiac disease went I went for a cancer screening colonoscopy (yep, over 50).  Two months after my celiac disease diagnosis, I fractured some vertebrae in my back doing NOTHING.  I was shocked that I had developed osteoporosis.  I also have Hashimoto’s Thyroiditis which, looking back, was due to years of undiagnosed celiac disease.  Two years ago after a gluten exposure (maybe an antibiotic), a tooth infection and the flu, I was diagnosed with Autoimmune Gastritis.  
 

I am maintaining a strict gluten-free diet.  I want to avoid a 4th autoimmune disorder.  😥. I think it is possible.  The gluten-free diet has actually healed my gastritis (not flaring now) and my thyroid is no longer enlarged and my nodules are gone!  A repeat endoscopy/biopsy has revealed a healthy small intestine!  

[Beverage]

How were you diagnosed?  What blood tests?  Biopsy?  Results?  Why were you even tested?  What were your symptoms?

 

[cyclinglady]

46 minutes ago, Beverage said:

How were you diagnosed?  What blood tests?  Biopsy?  Results?  Why were you even tested?  What were your symptoms?

 

I was thinking  the same thing.  I know that just seeing my blood test and biopsy results left me with no doubt that I had celiac disease.  Hard to deny it.   Takes time to accept it too.