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Carolann444

Member Since 23 Oct 2011
Offline Last Active Jul 18 2013 05:40 PM
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Posts I've Made

In Topic: Work Becoming A Challenge

21 June 2013 - 05:58 PM

That's good that they work with you like that.  I guess I just need to work that out where I am at.


In Topic: Are Certain Tests More Accurate For Those With Neurological Symptoms?

19 June 2013 - 03:59 PM

For anyone diagnosed with celiac who had significant neurological problems, which of the blood tests came up positive for you? Are some tests better at testing the neurological manifestations of celiac than others? I've read conflicting information on this. Some sources say that the older anti-gliadin tests are actually better at detecting celiacs with neurological issues, while most other sources say that the older IgA and IgG tests are no longer recommended for anything. 

 

I finally see a GI doctor next Monday. My daughter was just confirmed with celiac through blood tests and biopsy, so I'm hoping the GI will agree to do an endoscopy on me on the basis of life-long symptoms and family history, even though my blood tests were negative (while gluten light). They only ran the tTG-IgA and DGP tests on me. Should I request the older IgA tests?

 

I have been in the ER three times in the past ten years for unexplained ataxia and other weird neurological symptoms. The first time I was low on potassium, and they gave me some in the ER and it helped with the immediate problem, but we never figured out the root cause. The second time I tested positive for anti-nuclear antibodies, but a follow-up MRI with a neurologist was normal and again they dismissed it as some weird idiopathic  problem. The third time I lost 10 pounds in one week without trying, was extremely dizzy and disoriented, had weird vision problems, and kept forgetting words. This time they admitted me to the hospital and ran all sorts of tests (but not celiac tests), but again they found no cause. For what it's worth, one of my daughter's main symptoms was neurological problems (reflex problems and twitching in her sleep without evidence of seizures, sensory integration disorder, and extremely frequent explosive tantrums). After just a week gluten-free, her neurological problems are hugely improved. Regardless of my own diagnosis, I will also go gluten-free as soon as testing is over. But I just hope the GI will take me seriously and do an endoscopy even though my blood tests were negative.

I have those symptoms also, ataxia, double vision, dizzy, confused, can't think, drop things, etc.  I guess I should call my doctor and find out exactly what they tested.  But my allergist told me that both the antibodies were highly elevated and I tested positive in both areas.  So I guess I should find out what that means!  He diagnosed me as celiac and said there is no doubt.  I am gluten free now and the only time I have those neurological symptoms is usually 30 mins after I have eaten and I can track what went wrong and how I was accidently glutenized!


In Topic: Neuro Symptoms?

19 June 2013 - 02:58 PM

Yes, I can relate to all of that!   Ataxia fully describes what I go through.  I can't walk or move my arms without an extreme amount of concentration.  I'm dizzy, foggy headed, can't think straight and get confused.  Alot of times a reaction starts with tingling, either feet and legs or lips and face.  Then I notice I am dropping things and running into things.  Then it progresses to where I can't walk.  I have slurred speech and it is difficul,t if I can get anything out, for anyone to understand me.  Then my vision, my eyes cross sometimes so bad that it hurts. My husband says he can always tell when I start having a reaction from my eyes.  They look "freaky" as he calls it and they dilate. Once the reaction is full blown, all I can do is lay down and wait for it to pass.  Usually I can start to somewhat function after a couple of hours but the full effects can last for a few days.  I must be a very sensitive celiac because if I eat out and they don't cook it separately, different utensils, etc, then I will have a reaction.  Anyone else have that many symptoms?  I didn't used to get the neurological symptoms until about 1 1/2 years ago, (I have been sick for the past 6 years and just recently got diagnosed with celiac) and they did all kinds of testing in the hospital to make sure everything was okay neurological and it was.  I also get bad abdominal pains.  I have all of these same reactions when I eat dairy too, so I am now gluten and dairy free. 


In Topic: Not Wanting To Attend Any Social Functions Involving Food

18 June 2013 - 05:05 PM

I got sick of the social awkwardness that comes with bringing your own food or having to explain, so I stopped going. I'm not really involved in much that would require me to go, (I don't do church or anything like that) so it's usually not a big deal for me. When I have social eating functions, I have them at my house and I cook everything. If friends want to pitch in, I have them bring the raw ingredients and help me cook.

 

It isn't ideal, and I'll admit that I've become pretty depressed about the state of my life. I miss eating in restaurants, being normal...etc. I also am in recovery from an eating disorder that I developed as a result of gluten making me fear food. Since being in recovery, things have gotten a little better. I'm trying not to fear and just to trust that things will be okay if I do eat something. I'm also looking into enzymes that might (although I don't want to get my hopes up) help protect me from trace amounts from cross contamination. My main goal is to be able to eat out again.

Oh wow, I have had similiar things happen to me.  I was afraid to eat for awhile and lost weight and my doctor really got onto me about it!  I think that snapped me out of it some but I still think food is evil lol.  I had wondered if anyone else goes through this too.  I really need to be able to talk with others with celiac since no one around me seems to understand the severity of it.  And it seems I explain over and over and people don't get it.  I don't blame them though since I didn't understand it when I first learned about it.  I told someone the other day, you don't know what its like to go to a restaurant and see people pick up a menu and order whatever they want!  I know its healthier but it does make me feel like a freak or something.


In Topic: Not Wanting To Attend Any Social Functions Involving Food

18 June 2013 - 04:56 PM

I know how you are feeling.  I have been on the diet again now for a few months.  After being told I don't have celiac to now finding a good doctor who has diagnosed me with celiac.  I feel great when I am on the diet.  But it gets old when people bring food into work, or everyone wants to go out to eat, or you go to a wedding and there is everything you can't eat, etc, etc.  I feel like I don't want to do anything either because I have very severe reactions and I can't afford, not like any of us can, a mistake with food.  It is difficult and I guess it gets easier but sometimes I feel like I just don't know what to do and I"m not prepared.

Hello, I have been going to parties,BBQ's,etc for the last few years since being dx'd but now I have started to decline invitations because I find it so hard to go and watch everyone else eat and comment on how good everything tastes and  having to pretend it doesn't bother me. I find it's easier to eat at home first rather than bring my own food to events because it's hard to heat it etc. with a lot of people around and I've had people ask to try my food,etc!!!.  People ask what they can get for me to have and can't understand why I won't use their grill,etc.I just don't like explaining it all the time....I guess i"m kind of burnt out from this!! I try but I feel like I'm becoming more and more antisocial....Anyone else go through this? Thanks