Gluten Challenge: Patients with Non-celiac Gluten Sensitivity Report More Symptoms than Those with Celiac Disease

Hey Patricia

I've had chronic constipation for years. My joints and lower back ached regularly, my iron counts were often low, low wbc, low end of B12, bloated, abdominal pain, foul smelling and fatty BM (very small... like almond-sized) and never relieved, gassy, fatigue, and my hair fell out more than normal in the shower. I did have a long list of food and seasonal allergies as a kid... nothing life-threatening, but take Aerius from April to first frost to manage my symptoms. I do get itchy skin and throat/ear canal, and a feeling of water in my ears... like hearing under water. On top of this I am having acid reflux, nausea, and indigestion, with a feeling of a fist in my stomach (which a prescription for Ranitidine is helping magnificently!) All this said...years of these complaints have been fluffed off by my doctor. Every year at the time of my physical I'd complain about these symptoms, and every year he'd put me on iron if blood tests showed low counts, and tell me to drink more water and eat more fiber! What he wasn't listening to is that I DO drink plenty of water, and my diet is VERY high in fruits/veggies and fiber! My mother-in-law calls me the walking Canada food guide!

 

I was out of work in September when the kids returned to school and I decided to look into things myself. I found an interesting article online that suggested IBS symptoms could be linked to gluten intolerance. My mother-in-law IS celiac, so I am familiar with the diet and the label reading (because I do cook family meals). I always rolled my eyes at her when she suggested I get tested (hubby and kids were tested for celiac disease, but since I'm not in that blood line I didn't bother). After less than a week eating gluten-free, I began having regular bowel movements. After 2 weeks my joint pain was gone, the water in the ear feeling is mainly gone (had a few brief episodes) and pain in stomach gone. Most all of my symptoms are gone or greatly improved... it's been 5.5 weeks now. At 2 weeks gluten-free, I had a doctor's appt. His eyebrows shot up at my reports. He thinks my heartburn problems and my stomach issues may be connected, and I have been referred to a GI and an Alergist. In the meanwhile I had a genetic blood test for celiac disease since at the time of the requisition I'd already been gluten-free for 4 weeks and probably wouldn't show the necessary antibodies. BUT guess what? I got a call this week from the nurse saying I may, in fact, have celiac disease because it showed that my genetic make up supported a probability of Celiac!!! So, now I wait. I am not sure if I would consider going back to wheat in my diet just for a certain diagnosis. If things are working, I don't feel the need to be a "card-carrying Celiac"! I would, though, agree to the biopsies of the esophagus and intestines to rule out any growths or cancer.

 

Sorry so long-winded. Hope this helps!

This sounds like my story...I have fought IBS for YEARS, had 1/3 of my colon removed and still fight skin issues, arthritis and worst of all, such severe digestive issues I often feel as though I can't plan anything in my life for fear I will be "sick" that day! My gastro doc keeps giving more meds and also says drink more water, more fiber (take Metamucil and such which just abound turns me inside out!) I eat very carefully, lean meats and lots of fruit, veggies, fiber...but nothing has helped. I am now determined to try the gluten free with great hope for some relief. Thanks for sharing your information!

On 6/20/2012 at 12:23 AM, Guest SandraB said:

For us laymen, somatization is "the conversion of mental experiences into bodily symptoms" i.e., the pain in the body is real, but due to mental stress rather than having a physical cause. Known to the cynical as "It's all in the head."

So it's not all in our heads. It's in our guts - which is where and how we knew it was.

This is what happened to me. I went years and years with depression, chronic pain in my lower stomach (constant PMS 24/7 for almost 6 years), my stomach was awfully bloated, too. And (sorry, tmi coming) I was only going to the bathroom (number 2) once or twice a month and it was so bad, I bled, even when I was eating over 150 grams of fiber A DAY. Drinking at least a half a gallon of water A DAY. No bowel movements (and took a bottle of castor oil to get the job done and that was a nightmare, too). I then started developing eczema, two years after that, hives. I started looking into the hives, because I could only take so much with the eczema flairs and now these little itchy bastards covering my chest, arms and neck. So, after hours on the laptop looking up why I have hives and eczema, then why I was so bloated, every single site I looked at had ONE thing in common in the list of things that could cause ALL of my symptoms. Yep, you guessed it, wheat. I went to my doc, told her what I felt was happening (after my research) and guess what? two, almost 3 months gluten free and not only am I without hives, my eczema is NOWHERE near as bad as it was, I have lost 20 pounds and 7 inches in my stomach (from being constipated and extremely bloated). I feel so much better. Less anxiety, clearer head, regular bowel movements. The hard water in my shower irritates my skin, but that's it. I am so happy I discovered my gluten allergy, just sorry it took so dang long.

4 hours ago, Guest Amber Kay said:

This is what happened to me. I went years and years with depression, chronic pain in my lower stomach (constant PMS 24/7 for almost 6 years), my stomach was awfully bloated, too. And (sorry, tmi coming) I was only going to the bathroom (number 2) once or twice a month and it was so bad, I bled, even when I was eating over 150 grams of fiber A DAY. Drinking at least a half a gallon of water A DAY. No bowel movements (and took a bottle of castor oil to get the job done and that was a nightmare, too). I then started developing eczema, two years after that, hives. I started looking into the hives, because I could only take so much with the eczema flairs and now these little itchy bastards covering my chest, arms and neck. So, after hours on the laptop looking up why I have hives and eczema, then why I was so bloated, every single site I looked at had ONE thing in common in the list of things that could cause ALL of my symptoms. Yep, you guessed it, wheat. I went to my doc, told her what I felt was happening (after my research) and guess what? two, almost 3 months gluten free and not only am I without hives, my eczema is NOWHERE near as bad as it was, I have lost 20 pounds and 7 inches in my stomach (from being constipated and extremely bloated). I feel so much better. Less anxiety, clearer head, regular bowel movements. The hard water in my shower irritates my skin, but that's it. I am so happy I discovered my gluten allergy, just sorry it took so dang long.

Hi Amber Kay,

Your itchy hives could be DH (dermatitis herpetiformis).  You can read up on DH in the DH section of the forum.  You will find tips for how to deal with it there that might help you.  https://www.celiac.com/forums/forum/26-dermatitis-herpetiformis/

I was sick for four years before self-diagnosing sensitivity to gluten. I immediately began a strict gluten free diet and was amazed after a few days to be free of the symptoms which had plagued me for so long. My blood test also came back negative but I had been off gluten for over three weeks when I had it. My gastroenterologist interviewed me for 45 minutes about my symptoms and my reactions to gluten containing foods and concluded that, in spite of the negative celiac test, I would do well to live as if I were a confirmed celiac. I have been living gluten free for nearly a year. The diet is a real pain, but the improvement in my health makes it well worth the effort and expense. The only problems I have experienced over the past year have been caused by cross contamination, usually at restaurants where the staff does not understand the dangers of cross contamination. Be careful, having celiac disease and eating out is playing Russian roulette with a loaded gun.