Frustrated Possible Celiac

Tifani · Joined: 06 Oct 2009 Posts: 2

So maybe someone can help me. I am thinking after recently learning about celiac disease that maybe this is what has been plaguing me for the past 11 years! I am only 26 years old, but my symptoms started when I was 15. After a colonoscopy (which found one benign polyp) I was told that I had IBS and sent on my way without another thought (Even if I did still have debilitating cramps and diarrhea, so bad that it affected my daily life greatly). About 5 years ago I was diagnosed with b12 deficiency. I read online that you can only get b12 deficiency from pernicious anemia, crohns, poor diet, a tape worm or Celiac. Does anyone know if this is true? I have been tested and it is not due to pernicious anemia, crohns, or poor diet, and I am fairly certain I do not have a tape worm.

Last year, after taking months of liquid iron my ferritin was still low (but my oxygenation was fantastic!), and I went in for an IV Iron treatment. I tried to look online to find the reasons that someone would not be able to absorb iron through liquid vitamins and would need IV Iron but could not find anything.

I have been miserably tired for the past 5 years, so much so that I am not on provigil to keep me up during the day. I read that Celiac is a Genetic Disease - which would make sense because my poor mother cannot stay awake even on adderall. They cannot find anything wrong with her either, she always gets wishy washy diagnoses - like, "you might be narcolyptic" or "you might be hypoglycemic." Are these common things with Celiac Disease, not being able to pinpoint certain diseases?

I have decided to try a gluten free diet and just in the first few days I am feeling better. I switched from provigil to nuvigil (since the latter doesn't have gluten). I was thinking of getting the test from enterolabs to get a confirmation of Celiac. Can anyone tell me about their experience with them?

nancw · Joined: 04 Oct 2006 Posts: 1279 Location: Denver, CO

Welcome to the forum.

Perhaps you should consider mainstream testing for Celiac before going the Enterolab route. Blood tests and a upper GI endoscopy with multiple biopsies taken to identify villi damage are the current standards for diagnosis. Do you have access to a gastro doc who is Celiac savvy who can do this for you? You will need to do this asap, as you are already eating GF, and this will skew your results.

There is nothing preventing you from using Enterolab or simply going GF to see how you feel, but you should try mainstream medicine to get your first round of answers. You may actually have Celiac, you may not. Regardless, testing is the first step.
_________________
Nance

gluten, dairy, soy, rice, yeast and 99% grain-free

Tifani · Joined: 06 Oct 2009 Posts: 2

cruelshoes · Joined: 23 Sep 2005 Posts: 3556 Location: Washington State

A week is not enough to skew the bloodwork results. However, if you decide to go ahead to get the biopsy, you need to go back on a full gluten diet. In some celiacs, the villi regenerate themselves very rapidly after removing gluten from the diet. Once study I read said that villi changes can be observed in as little as two weeks.

I hope your bloodowrk gives you some answers. Please let us know when you get your results.
_________________
-Colleen

Where are we going, and what am I doing in this handcart?

nancw · Joined: 04 Oct 2006 Posts: 1279 Location: Denver, CO

What Colleen said Smile

As one who went GF before testing, I highly recommend doing all testing before going GF so you can at least know that you did it, regardless of the results. I will always wonder...

You do yourself and potentially, your family a great service by going this route. If your results (from traditional testing) are negative or inconclusive, you can always go GF anyway (and get Enterolab testing) if you know that gluten is a problem for you, and you feel better without it.
_________________
Nance

gluten, dairy, soy, rice, yeast and 99% grain-free