Gluten free and still having symptoms years later. Anyone else?

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New Member

Date Joined Mar 2014
Total Posts : 1
   Posted 3/15/2014 7:35 PM (GMT -7)   
Here’s a brief history:
I went most of my life without being diagnosed (diagnosed 5 years ago at age 16), but its kind of baffling given that I've been sick since the moment I began eating solid food. As a baby/young child my symptoms were always brushed off to be either a stomach bug or IBS (Not sure why. When I look at my toddler pictures I was tiny with a significantly distended belly). Getting older I suppose no one wanted to consider a digestive disease because I was bigger (despite my good eating and physical activity habits which should of posed questions. We know now that my body was just in starvation mode for years, storing carbs). At age 12 I began having seizures and migraine headaches with no probable cause (diagnosed as Epilepsy but believed now to be caused by Celiacs). When I was 16 someone decided to finally send me to a GI when I began having severe pain and bleeding. GI said he knew I was Celiac before he even scoped and did the biopsy because the markers were so high in my blood work.

I began feeling better once stating the gluten free diet (not completely but significantly). I did something stupid and didn't return to a GI specialist when I had to transfer over to adult care at 18 because there seemed to be no benefit in the clinic appointments. It was mealy just Hi, how are you, okay bye. Never elaborating much on my symptoms, nor was I ever recommended on any nutritional supplements even though my vitamin/mineral levels were bottomed out. Sort of regretting that decision giving how I've been feeling for at least the last year.

Note: I do not cheat, the only time I ever eat gluten is during those rear pesky contaminations (often by other people’s doings, haha). However I was being glutened often last year in a university meal hall (food wasn't being handled properly). But I stopped eating there when I began to realize this. And I do understand this is just a form. Just curious if other’s experienced similar situations post diagnosis.

I have/Still have

-Frequent, lose greasy stools. I even pass bile from time to time.
-Frequent “Hunger” pains (Not sure how else to describe them. A Gnawing sensation?).
-Abdominal pain
-Poor dental health, despite the fact that I am very serious about my dental hygiene.
-Poor energy level. Always tired even after sleeping.
-Frequent join/bone pain from head to toe.
-Brain fog
-The skin in under my eyes is significantly darker all the time.

I defiantly know I have vitamin deficiencies. However its strange because I've always been told that these symptoms would disappeared once my villi began to heal. Nope, not for me.

Veteran Member

Date Joined May 2010
Total Posts : 8384
   Posted 3/16/2014 6:49 AM (GMT -7)   
Just because you have celiac disease doesn't mean you don't also have something else. I think you need to go to your GI and discuss how you are feeling.

Some of the symptoms you describe can fit a reflux diagnosis, for example.

Have you had blood tests to look at your iron levels? How's your vitamin D level?
50 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)generic Colazal (96 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), psyllium (1/2T daily), mesalamine enema as needed. Gluten free as of 5/30/11. Colonoscopy found no evidence of inflammation on 8/16/1

Jasmine Grace
Veteran Member

Date Joined Jun 2013
Total Posts : 815
   Posted 3/22/2014 7:20 AM (GMT -7)   
Perhaps you have leaky gut as well...
Age: 19
Conditions: Fibromyalgia, chronic fatigue syndrome, chronic pain syndrome, irritable bowel syndrome, food intolerances, complex regional pain syndrome, anxiety, allergies, atopic dermatitis, low immunity, tinnitus, restless legs syndrome, scoliosis, etc.
Goals: to be an occupational therapist; to explore the world.
"Reach for the moon; even if you miss, you will land among the stars."

Regular Member

Date Joined Apr 2014
Total Posts : 161
   Posted 4/14/2014 6:22 PM (GMT -7)   
look for leaky gut as JASMNE GRACE says.... or look at candida yeast over growth.... this yeast eats gluten, grains... and all the GF foods... potato rice, beans and corn
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