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Member Since 28 Jun 2013
Offline Last Active Jan 25 2015 02:58 PM

Topics I've Started

6 Month Checkup, New Gi Doc And Gene Test

28 March 2014 - 04:54 PM

My insurance changed so I now have a new GI. He is very knowledgable in Celiac disease. When we tried to get my records from Kaiser transfered over, they said they didn't have any record of my testing (seriously?) anyway since I've been gluten free for almost 7 months he decided to do gene testing on me for his own records.


I came up postitive for DQ2 and he also did my 6 month celiac blood panel which as expected my levels are good. I will have a follow up endoscopy next month to check on healing.


Soooo he strongly encouraged me to get my children gene tested since both of their celiac blood panels were negative, he says they are not going to show up positive because our household is gluten free. The only gluten they get is lunch and if we go out and they get hamburgers. I don't want to wait and see if they develop Celiac, I would never want to see them go through all the illness I've had to endure!


What is the Celiac communities thoughts about if children show up positive on gene testing?  Do you take them off gluten or wait and see if they develop it?



Update On My Ongoing Health Issues

23 March 2014 - 05:22 PM

Most of you know I've been dealing with cardiac symptoms and a host of other problems. I haven't posted in a while but I was finally referred to a special cardiologist called an electrophysiologist. He diagnosed me with dystaunomia: subtype POTS and possibly inappropriate sinus tachycardia. Just thought I would update those who were helping me process my symptoms. Most days are spent exhausted and unable to do my normal activities. My heart rate can get up to 143 just standing doing my makeup. It's literally exhausting because it's like I'm constantly working out and doing cardio! My blood pressure drops and I have on several occasions almost fainted. Dystautonomia is a dysfunction of the autonomic nervous system. The 2 ER visits I had were complications of this. Blood pools in my legs therefore I developed blood clots in my legs, and the kidney stone and infection was because the autonomic nervous system regulates the kidneys and bladder.

Sooooo not sure if celiac is a player here or not, perhaps this condition triggered my celiac....who knows. One thing research has shown is those with dystautonomia have either celiac or NCGS as well as milk protein intolerance

There is no cure and some days will be better than others. I have to take a medication that increases my blood volume and eat a high sodium/salt diet to keep my blood pressure stabilized. My GP has referred me to Standford here in CA, they have an entire team of cardiologist and neurologist who specialize in this condition as well as an entire testing facility.

That's my update ;-)


18 February 2014 - 08:34 AM

The past month or so I've been getting tingling and numbness in my hands, they also get very cold and my legs turn weird colors in the shower. I've also had thrombophelbitis this past month--never had it before

My Dr thinks its Raynauds. Is it usual for this to show up after being gluten free for almost 6 months? I would get the tingling before at the grocery store when my hands would get cold but now it happens more often.

My cardiologist put me on a calcium channel blocker for my irregular heart rate and said this would help with the tingling as well but I'm wondering if I need to be evaluated for another AI issue?

Healthy Choice Chicken And Rice Soup Recall

05 February 2014 - 04:11 PM

Heads up!

Campbell's healthy choice chicken and rice soup is in a nationwide recall. It was mislabeled! It contains wheat!

So far it's just the microwaveable kind but some say the canned version glutened them.

Here's the link

Celiac Disease Linked To Asthma And Possibly Ischemic Heart Disease

01 February 2014 - 12:34 PM

I had my adult onset asthma hit like a brick in 2012. Multiple rounds of prednisone, 1 hospitalization, and urgent care visits for oxygen and nebulizer treatments. They couldn't figure out why it hit so acutely and was so difficult to control. Hmmm I think I know why! It's been a huge thorn in my side. But 6 months gluten free and it's controlled!

I'm now undergoing cardiac testing and have a stress test on Feb 11th because my cardiologist suspects ischemia. This article is pretty eye opening.


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