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ravenwoodglass

Member Since 17 Apr 2004
Online Last Active Today, 02:30 AM
*****

Posts I've Made

In Topic: My Life Long Stuggle

Yesterday, 11:23 AM

Welcome to the board. You found a big group of people who have gone through the same sort of things that you have. Some of us diagnosed celiac and others told they are gluten intolerant.  It is great you are feeling so much better so no matter what label you fall under you are doing the right thing. There are those of us who developed symptoms as children. I was one. There are also folks who don't have symptoms until later in life. 

I hope your GI did an endoscopy not a colonoscopy. The endo goes in from the top and is the scope they use to check for celiac since the damage is found in the small intestine. The colonoscopy requires a 'clean out' prep and they go in from the other end. 

Do be sure to read the Newbie 101 thread at the top of the Coping section as it will have alot of valuable info for you.


In Topic: Stopping Gluten Before Endoscopy

Yesterday, 02:04 AM

Call your doctor's office and ask to speak to a nurse. Tell the nurse what is going on. It will get relayed to the doctor and some doctors will have you stop the challenge or if they have a cancellation they may be able to get you in sooner. If you had positive blood tests the doctor may even diagnose you based on your blood work and reaction to the challenge. 


In Topic: Kraft Cheez Whiz

15 December 2014 - 12:18 PM

Yea Cheese Wiz is gluten free. In addition to the good advice you got from Bartfull keep in mind that gluten reactions can be delayed. What 'gets' us can be something we ate even a couple days before. I hope you are feeling better soon.


In Topic: Testing For Gluten Ataxia And Neuropathy?

14 December 2014 - 11:42 AM

You have a very savvy neuro there. It sounds like what your neuro is referring to as 'white matter intensities' are something that are also called UBOs or unidentified bright objects. I had them and my doctor was clueless and it was a few more years before I was diagnosed celiac and could begin to heal. In doing some research a couple years after I was diagnosed I discovered that those lesions are diagnostic of celiac that has attacked the nervous system. I wish I still had links to the articles (I wrote a paper in college on the subject) but they were lost with my last computer crash. If you do a search for UBOs or Neurological effects of celiac there are a few peer reviewed articles in PubMed and other publications of that type.

Interestingly I also showed false negative with blood work. I only had the older tests though so I don't know if I would have been positive on the newer ones. 

You are seeing some positive changes on the diet. That is good. However if you want more antibody testing or to have an endoscopy you need to get back on gluten pronto. Your digestive symptoms may return or escalate but you have to be eating gluten for any more celiac related testing. It sounds like your neuro has basically diagnosed you already though. 

Healing the nervous system can be a slow process. One will heal fully but some with have some residual damage. Have you had your B12 levels checked? If so what were the results? Some doctors consider anything over 250 to be normal but new research says those levels should be at least 500. If your levels are on the low side a sublingual B12 supplement can help with the healing. the dosage will seem high on the bottle but your body will excrete any that it doesn't need. 

I found physical therapy to be very helpful and if your doctor hasn't already given you a script for it you might want to ask for one. 

I hope you heal quickly but be patient. I, like you, was on canes at diagnosis and used walls and furniture to get around the house. Things got better slowly but one day about 6 months post diagnosis I heard a noise and without thinking ran upstairs. I realized what I had done when I got to the top and sat on the stair and bawled like a baby.  I still had years of healing ahead but that day gave me back hope that I would someday be close to normal physically again. 

Hang in there and there is no reason not to ask your ped to screen your daughter. You should encourage your Mom to get tested also. If she is reluctant at first that may change as she sees you recover your health. 

Welcome to the board. Read the Newbie 101 thread at the top of the Coping section and ask any other questions you need to ask.


In Topic: Throwing Up “Just Because”?

13 December 2014 - 11:51 AM

 

 
 

 

I'll try to keep track of what I eat and what seems to cause reactions. I don't want to do even 1 day of the gluten challenge. This past Sunday all I ate was something that may have only had tiny trace amounts of gluten in it and it left me feeling sick for over 4 days. 

 

Is the vomiting so unusual for celiac? I was under the impression that it was a common symptom... 

 

While vomiting is not one of the most common issues it does happen to some of us.  It can take some time to heal and our systems can be touchy till that happens. Keeping a food and symptom journal can seem like a pain but it can help you pinpoint other issues you may have. 

Do be sure to check your scripts, otc drugs and supplements to be sure they are gluten free.  

What did you eat that you thought might have been CC Sunday?