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Waiting On Test Results

Samwise16

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Samwise16 Newbie
Samwise16
Posted

Hi all,

Obviously I'm new here. I am 24 years old and just last week had the blood test for Celiac. I am nervous and I guess want validation that this could possibly be the answer. I am not completely thrilled with the way the doctor went about things and spoke to me, but I am hoping he is just waiting to see what the blood test says before taking me seriously. (Key word there being hoping.) It also kind of irritated me how he automatically jumped to IBS..

I guess I should start with why I wanted to be evaluated. I have had crazy fatigue my whole life and was recently diagnosed with hypersomnia but they can't rule out narcolepsy. Just to give you an idea of how tired I always am, I fell asleep in. Less than 30 seconds during the nap challenge (averaged between 4 naps) and less than minute with all 5 naps included. I also was technically asleep by the time the nurse walked out of the room for the actual sleep study. I was also diagnosed with insulin resistance 5 years ago. At one point during my treatment they informed me I had a vitamin D deficiency. TMI alert: I have always had weird bouts of stomach pain but this past year has been awful for the pain, bloating (this especially), foul smelling stools (as well as pale, greasy, black, etc etc you name it), indigestion, diarrhea, and constipation. Now, when it comes to weight.. I have actually been overweight my whole life and it takes a tremendous amount of effort to lose any poundage.

I didn't start putting all this together until I was reading an article about genetics and narcolepsy (I am a genetic counseling grad student). It mentioned some other autoimmune disorders that can be associated with narcolepsy, one being celiac. I had a general idea of what was involved with celiac but decided to look up more information about it. Yeah, I was a little bummed at how much I fit the bill (at least, I think I do). I especially got upset when I saw the non-GI signs... Last fall I could not get rid of angular chelitis for months, I was diagnosed with "psoriasis" (pretty sure it isn't this and is actually dermatitis hepaform) as a kid, and I have lost a ridiculous amount of hair in the past few years. When I say ridiculous amount I mean over half my hair thickness. That isn't an exaggeration. Oh and let's not forget ridges in my nails as well as white spots (though I admit some of those are from biting my nails).

Anyway, I guess I'm worried that I am trying to diagnose myself and I don't want to be expecting a positive test if it could be something else. I also don't know how reliable the test is, and I'm purposely trying not to research it before I get the results back in order to not freak myself out.

All that being said, I am on day 5 of being gluten and lactose free and let me just say... This adjustment sucks. I mainly am sad about the fact I can't bake the way I used to. I make cupcakes frequently and I kind of feel like I'm losing my identity. I know I can find great gluten-free/LF recipes (I have found some already) but it will definitely take time to get things perfect.

So... Sorry for the long winded first post, but any advice, comments, etc would be greatly appreciated. :)

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ravenwoodglass Mentor
ravenwoodglass
Posted

The first thing you need to keep in mind is that testing does have false negatives. False positives however are very rare. If you are going to have the endo done you need to get back on gluten until that test is done. When all celiac related testing is finished then you do need to give the diet a good strict try no matter what the results.

If you suspect that you have DH you can go to a derm who is familiar with DH and have a skin biopsy taken from beside an active lesion. A diagnosis of DH is a diagnosis of celiac and no further testing would be needed.

The diet does seem daunting at first and it does involve more than just food. You would need to have a dedicated toaster for your gluten free stuff and replace stuff like strainers, scratched non-stick pans and wooden utensils. The best thing at first is to go with whole unprocessed foods. You will be able to have things like cupcakes, pizza etc they will just be made with gluten free flours.

Samwise16 Newbie
Samwise16
Posted
  • Author

I'm glad you mentioned the endo and my current diet.. I was wondering this as well but I guess I am secretly banking on the blood test :( The doctor told me to start cutting out milk and bread but not to go too crazy just yet. I think I had the feeling of go hard or go home because I am so sick of being bloated, losing my hair, etc. *sigh* I caved on Sunday and had a cupcake at my sister's bridal shower and within half an hour started feeling sick again - I didn't think I would have a reaction like that. I guess I need to suck it up and eat some gluten until all is done. :(

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