Going on a gluten-free diet...any advice?

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Xianghua17
Regular Member


Date Joined Jun 2003
Total Posts : 79
   Posted 3/18/2014 5:16 PM (GMT -6)   
I've been having a lot of problems lately. It has put me out of work and sent me to the doctor repeatedly. I found out about Celiac disease through research, trying to find out why I hurt. I talked to the doctor today and asked her what she thought about trying to cut gluten. She did blood work to test for Celiac and told me to try it. If anybody here has any advice I'd appreciate any help you can give. :-)

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8383
   Posted 3/18/2014 6:35 PM (GMT -6)   
My advice is to avoid the processed replacement foods marked "gluten free" in the beginning. Prepare your own food. Be careful of prepared sauces like soy sauce or other processed foods. give yourself at least 3 weeks to see if this makes a difference.
*******************
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 3/20/2014 6:22 AM (GMT -6)   
Last year I went completely gluten free without a diagnosis. (I did this because doctors had tested me for Celiac before and said I wasn't Celiac, so I started to think it was gluten intolerance). I went through horrible withdrawal symptoms for 3-4 months, and then I started to feel loads better. After a while, I finally got through the waiting list to have my endoscopy. But by the time I had it, any damage that had been done was healed. Then when I tried to do a "gluten trial" so I could damage my intestines again to get a diagnosis... the symptoms came back worse than ever and I ended up in hospital. So I went back to a gluten free diet. After a while, people started to convince me that I had a psychiatric condition rather than a gluten intolerance. So I started having traces of gluten here and there, trying to build up tolerance to it and trying to convince myself that it wasn't hurting me.

I have finally been diagnosed with Celiac through a blood test and the worsening of symptoms that occurs after I eat gluten (determined by a dietition). I had been eating a low gluten diet when I had the blood test, so it showed up weak positive. The doctor said if I'd been eating a normal gluten diet, it would have been strong positive. I asked the doctor why it hadn't shown up in my blood tests a couple years ago, when I was eating a full-gluten diet and I was completely bedridden. He said that I am IgA deficient, and the other doctor hadn't considered that when they tested me before.

Points of the story:
- Don't go gluten free without getting a diagnosis first, or your symptoms may come back way worse if you have to start eating gluten again so that you can have an accurate endoscopy.
- Ask if your doctor has ordered a TtG blood test that tests for IgA deficiency as well - if this shows up positive, she should refer you to a gastroenterologist for an endoscopy.
- My advice is don't go gluten free until after you get the blood test and/or endoscopy results.

I hope you get an accurate diagnosis and proper treatment soon :)
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."

Jasmine Grace
Veteran Member


Date Joined Jun 2013
Total Posts : 815
   Posted 3/21/2014 3:34 PM (GMT -6)   
http://theceliacmd.com/2013/04/six-reasons-to-test-for-celiac-disease-before-starting-a-gluten-free-diet/

Please copy and paste this link into your browser
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."

Xianghua17
Regular Member


Date Joined Jun 2003
Total Posts : 79
   Posted 3/21/2014 5:21 PM (GMT -6)   
kazbern-Thank you...gluten-free is expensive. I priced a bunch of food. I think I'll follow Jasmine's advice until I have been diagnosed(if it is Celiac.)

Jasmine- Thank you...I am supposed to see a GI specialist. I hope they can provide some answers. I do have 2 kids, so if it is Celiac then I need to know. Both my kids get tummy aches for no reason. My daughter more than my son. She actually gets headaches and migraines along with them sometimes.
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