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How Long Must I Wait!

Jocelyn357

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Jocelyn357 Rookie
Jocelyn357
Posted

Ok, so I have been lurking around these parts for a while now trying to convince myself to get tested for Celiac. I'm so thankful for the great info I have found here so far. I decided to order the Enterolab tests, and I'm THE MOST impatient person alive. I know they say it can take up to three weeks for results. Well, it's only been 8 days and I'm already checking their site for my results like twice daily. What a nut I am!!! Can you tell me how long you had to wait for your results? My symptoms include (but of course are not limited to) Acute Panic disorder, Depression, life-long constipation with occasional diarrhea, chronic fatigue, non-specific seizure episodes, vision problems, vertigo, low imune system, nausea, etc, etc, etc. But my real problem is I RARELY go to the doctor, because I have had a couple bad experiences with doctors reading my chart, seeing I have panic disorder, and treating me like it's all "in my head". So I haven't been to the doctor in almost 4 years. Bad, I know. I shouldn't have to live like this at 26 should I? I am so anxious for my results. Thanks for any help, comments. BTW, I have this new thing happening where I wake up in the middle of the night, sweating and am freezing! Are body temp problems typical of Celiac/Intolerance?

Jocelyn

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Posted
Ok, so I have been lurking around these parts for a while now trying to convince myself to get tested for Celiac. I'm so thankful for the great info I have found here so far. I decided to order the Enterolab tests, and I'm THE MOST impatient person alive. I know they say it can take up to three weeks for results. Well, it's only been 8 days and I'm already checking their site for my results like twice daily. What a nut I am!!! Can you tell me how long you had to wait for your results? My symptoms include (but of course are not limited to) Acute Panic disorder, Depression, life-long constipation with occasional diarrhea, chronic fatigue, non-specific seizure episodes, vision problems, vertigo, low imune system, nausea, etc, etc, etc. But my real problem is I RARELY go to the doctor, because I have had a couple bad experiences with doctors reading my chart, seeing I have panic disorder, and treating me like it's all "in my head". So I haven't been to the doctor in almost 4 years. Bad, I know. I shouldn't have to live like this at 26 should I? I am so anxious for my results. Thanks for any help, comments. BTW, I have this new thing happening where I wake up in the middle of the night, sweating and am freezing! Are body temp problems typical of Celiac/Intolerance?

Jocelyn

My tests took exactly 2 weeks. If you are doing the gene test as part of the larger celiac panel, I believe that one is sent out to another place, so they probably wait until it comes back to compile all the results.

There are so many symptoms and other possible disorders connected to celiac, it's always hard to know what is going on. Getting the tests is a good start, and you proceed from there. If you have anibodies etc. and have the associated gene, then you can point yourself more in that direction....and try the diet and see if you symptoms subside over reasonable time on a strict diet. If you don't have the genes and you don't test positive on the stool tests, then you obviously should try to find out what else could be going on to account for your symptoms. HOWEVER.....most if not all of your symptoms mentioned above could be explained by celiac disease or at least by gluten sensitivity. I don't know about the seizure episodes, though....maybe that should be checked out--maybe someone else here has experienced that at some point in time before their diagnosis. You should not be afraid of doctors, but you should evaluate whoever you go to and see if you like their manner, feel confidence in their manner and knowledge, and if you don't like a doctor you find someone else. There are good doctors and bad doctors like in every other profession. Remember, they are working for YOU, it's your money that pays them! <_<

Rachel--24 Collaborator
Rachel--24
Posted

I got my results in a little less than 2 weeks. They will email you the results. Seems like they email them on Sundays alot of the time. I got mine on a Sunday.

I had the nightsweats/chills quite frequently but along with gluten intolerance I had a bacteria infection so not sure which caused it. Could have been a combination of both but I've only recently been diagnosed with the bacteria infection and since going gluten free 10 months ago my night sweats are few and far between and not nearly as severe.

I got my results in a little less than 2 weeks. They will email you the results. Seems like they email them on Sundays alot of the time. I got mine on a Sunday.

I had the nightsweats/chills quite frequently but along with gluten intolerance I had a bacteria infection so not sure which caused it. Could have been a combination of both but I've only recently been diagnosed with the bacteria infection and since going gluten free 10 months ago my night sweats are few and far between and not nearly as severe.

ms-sillyak-screwed Enthusiast
ms-sillyak-screwed
Posted

Jocelyn357 -- I'm not sure if this thread is okay to post this but I don't think others will mind.

I noticed you said you get seizure episodes. ME TOO! WHAT ARE YOURS LIKE??? I also suffer from them along with post traumatic stress (PTS), celiac disease and other life threatening food issues. People don't understand what we go through... I look great -- except those people don't see me when I'm laying on the bathroom floor having what I call an 'episode'. I have just discovered epilepsy in my family the hard way. I have, oops, had an Auntie that was on a feeding tube being pumped with gluten and she was getting them too. I was powerless to stop the doctors and nursing home. She is no loger with me she passed holding my hand at hospice in Oct.

Open Original Shared Link along with some links I found about celiac and seizures (on the right side bottom of the blogg)

But, my seizure started if I eat corn, gluten, dairy or other things that trigger it for me. The first 3 time in the last 10 years they came from pop corn. So I stopped pop corn. It seems that after the food gets into my colon it spasms so bad and the pain is so intense, I loose control of my body and pass out. I've hit my head cut up my head from hitting it on the bathtub or floor. I wake up with my little dog licking my face. I can't control my bowels (imagine that) I shake, get really pale white, feel like I'm going to die, and can't cry out for help. It adds to my PTS. It is frightening to say the least. My 85 year old daddyO lives with me in the winter months and he has witnessed them. :wub: One time he picked me up off the bathroom floor and put me into bed, and gave me electrolytes it does wonders for me.

I get the night sweats, not cold anymore (that was from my thyroid) before I had it radiated. That's another story. After reading several of Rachel--24 posting she helped me see something I never noticed I was doing. If I eat any sugar about 3 or 4 hours or so before bed I get them too.

I've lived gluten & dairy free 5 years. I have not been tested for celiac disease the doctor said I had a spastic colon and wouldn't do a biopsy :angry: when he did the colonoscopy. And another doc told me "You know you have celiac disease and I know you have there in little you can do save your money." :(

On Monday my daddyO is going for the celiac disease profile test. He said to shut me up and prove he doesn't have it. But he has only one symptom he's anemic oh and he's diabetic, borderline hyper thyroid. I have read posts that say unless you eat gluten before you are tested and right before you are tested you will come back with a false negative. So over the weekend I'm going to feed him gluten everything and hope I don't get cross contaminated.

Oh that reminds me -- check the ingredients in your medication, it might contain gluten and dairy. It might be adding to things. Go to a compound RX that is free of those binders they use.

The other things I've learned here (the group here is wonderful people) that if you have a seizure and want to be tested for epilepsy you have to be tested with in 24 or no more then 48 hours max in order to get a true test results otherwise it a false negative. I haven't gone for testing... I don't want to loose my drivers license. I'm alone, no hubby, or kids to help me.

Stick to your gluten free diet. Some of us have more then celiac disease here. Soy is a problem, green tea, dairy, peanut butter, night shade veggies for some. Listen to you body and stay connected to these wonderful people we all care about each other here. Sorry my post is so long --

Stay well!

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