Nonceliac gluten sens. ???

[Figuringitoutsm]

Hi everyone! Fairly new to all of this. 
I’ve always had some for of idea that I can’t eat certain things due to the amount of painful bloating I used to get when I was younger. I would excuse it by saying things “I don’t like pasta” so I wouldn’t eat it (but I would here and there but I have always tended to avoid it). I’m about to be 30, I have canceled out dairy 7 years ago because I am severely lactose intolerant. Doing this helped me so much. 
 

but recently, I’ve been noticing some symptoms that I’ve always had but it’s been progressing, if that makes sense. I don’t believe I have celiac. But maybe a sensitivity to gluten. Examples:

severe bloating

Painful stomach

stomach is extremely hard

Random bumps showing up on my skin such as my forehead stomach and chest

foggy head

Constipation

extreme exhaustion

And I’ve struggled with depression and anxiety since I was young  

so far this is what I’ve picked up. Is this common for sensitivity to gluten? I decided to experiment for this week and not eat any gluten and I feel great. Then I took a tiny bite of something with gluten in it and my stomach hurt so bad. I’m starting to slowly figure out but I was wondering what it was like for any of you?

My doctor appointment isn’t until may 19  

thank you in advance. 

[trents]

Welcome to the forum, Figuringitoutsm!

What makes you think you have NCGS (Non Celiac Gluten Sensitivity) rather than celiac disease? NCGS is 10x more common than celiac disease but they share many of the same symptoms and your catalog of symptoms matches either very well. You really can't know until you are tested. There are two types of testing to check for celiac disease. The first stage is usually to check for antibodies in the blood that are peculiar to celiac disease. The second stage, typically done for confirmation if any of the antibody tests for celiac disease are positive, is an endoscopy with biopsy of the small bowel lining to check for damage to the villous lining of the small bowel. There is no test for NCGS so celiac disease must first be ruled out in the context of continuing symptoms.

But please hear this: You must be eating regular amounts of gluten for either type of test to be valid so go back on gluten for 6-8 weeks prior to the antibody testing! For the endoscopy/biopsy you must be back on regular amounts of gluten for two weeks leading up to the procedure date.

[Wheatwacked]

The main difference between Celiac Disease and Non Celiac Wheat Sensitivity is that when they can't prove Celiac through blood tests and endoscopy but you improve on GFD it is NCGS. Some like Dr Fine hold that they are varying degrees of the same disease.

You need to be eating at least 2 slices of gluten bread a day for the tests to be accurate. Go back on gluten (yeah, it sucks) and ask your doctor to run a Celiac blood test panel now so he can have the results when you see him. Why wait, talk to him then wait again for test results? Your symptoms are all classic for Celiac or NCGS.

Also try to get tested for vitamin D and homocysteine, not usually done but important. High homocysteine can indicate deficiency in B12 + Folate, B6, and/or Choline. It is an indicator of inflammation.

25 minutes ago, Figuringitoutsm said:

depression and anxiety since I was young

That would be low D. Look up Seasonal Affective Disorder.

26 minutes ago, Figuringitoutsm said:

extreme exhaustion

Vitamins B1, B3, B5, B6, B12, Folate and Choline are all needed for energy production and common are common deficiencies due to malabsorption syndrome comorbid with Celiac or just plain not getting enough in the Standard American Diet.

 

29 minutes ago, Figuringitoutsm said:

severe bloating, Painful stomach, stomach is extremely hard, constipation, Foggy 

Choline. Choline is needed for fat metabolism.  Deficiency can cause gall bladder problems. It makes up the mitochondria membrane (energy factory). Acetylcholine is a neurotransmitter (brain fog).

As far as I know, increasing those vitamins will not affect the testing but will certainly give you a headstart on your recovery path.