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[Tyefromnj]

Hello everyone,

My name is Tye. I am a 25 year old chemist who lives in New Jersey. I will start from the beginning.

About June 3rd of this year I came down with a serious viral upper respiratory infection. It was pain that i have never felt before. At the time I was weight lifting a lot. As the infection was healing, I began to get some numbness in my right leg as well as both ulnar nerves (pinky and ring fingers). The pain in the nerve circled around my ribs around my heart. At this point I thought that I was getting symptoms of a TIA attack(pre stroke), as I was also getting some impaired vision and lightheadedness. After checking myself into a hospital around June 23rd, I got screened for the stroke symptoms which all came back negative. The doctors kept me there because they thought my nuerological symptoms could be an indicator of something worse. I then got a thorough work up of lyme disease, lupus, MS, and diabetes, which all came back negative , thank god. After being release, still feeling like I got hit by a truck.

Two weeks later I saw a neurologist and I told him symptoms of numbness in the fingers as well as pain in back and lightheadedness. He also did a physical exam which ruled out any demylating diseases and told me I should get an EMG test done to confirm if I have nerve damage or nerve impingement. As he was ending the exam, he asked if I have ever had any stomach ailments. I told him I had some Gerd symptoms throughout my life, without heartburn though, and I nearly always felt bloated. He told me I should get tested for Celiac Disease.

Now I didnt really know much about the disease except that people who eat gluten get upset stomachs. Sorry for my ignorance. After getting the celiac panel done this monday, I got the Emg done. The results stated that I have radiculitis, which is simply nerve impingement and will start PT soon. I will find results of the Celiac panel this tuesday on my next neuro visit.

I am still a little light headed today. After eating alot of gluten products today, I feel extremely bloated. For the past seven years I am always constipated and when I do go the stools are very soft, somewhat thin and just dissipate in the toilet as I pass them. The same for today. I have muscle twitches all over my body that are not painful but annoying. I sometimes have trouble remembering things and some times I stutter my words. My vision over the passed few months has diminished somewhat. I have recently had alot of trouble sleeping due to my bloating and constipation. But taking some warm milk with honey recently has given me some relief with that issue.

I am just wondering whether some of you have almost wished you had the disease before you were diagnosed. It's hard to describe but i feel like it would almost be a gift to know that I could simply drop all of my ailments by changing my diet. I am pretty healthy to begin with and it would be very easy for me to control my diet. All these negative test i feel has made me feel like a hypochondriac and a false burden on my family. Any help or suggestions would be great guys.

God Bless,

Tye

[*lee-lee*]

I am just wondering whether some of you have almost wished you had the disease before you were diagnosed.

hi Tye and welcome!

in one word, the answer to your question is YES! i had random health issues (joint pain, acne, weight gain and fatigue, of course in addition to the big D) for about a year prior to figuring out it was Celiac. i would have never suspected everything was tied together - and of course, neither did my doctors. (and i realize now that i didn't have it as bad as some people but i tend to overreact so it all seemed like the end of the world to me.) when i was awaiting the results of the blood tests, i remember telling my boyfriend that i just hoped it would come back positive so i could just have an answer to all my problems. the diet suddenly didn't seem daunting - it seemed like a relief.

i'm still struggling for an "official" diagnosis - i've self-diagnosed but there's still a part of me that wishes it was official. i know i don't need it to get better but i feel like it would just validate me in the eyes of others.

i wish you luck and hope you get the positive result you're looking for! Just remember, you don't need a diagnosis to change your diet. (if there's one good thing about Celiac and/or gluten intolerance, that's it.)

[Tyefromnj]

I am curious. Your blood test look like they confirm antibodies but your Biopsy is false. Why do people choose to get biopsies, as a doctor may not find the right portion of your small intestine, and a blood test clearly show antibodies to the gluten molecule. Or does the blood test not clearly identify the antibodies as a cause of Celiac disease?

Thanks again for your response.

~Tye~

[*lee-lee*]

it all happened very quick for me. i went to the doctor complaining of upset stomach, diarrhea, etc and mentioned my grandmother has Celiac. my doctor ordered a full Celiac panel and when that came back positive, she immediately began talking about a referral to a GI doc for a consult and biopsy. She explained, "the biopsy is the gold standard for diagnosis". I had less than 2 months to get it all done before my insurance lapsed so i quickly agreed and was able to get scheduled for the initial consult within 3 weeks. the biopsy was scheduled for the following week.

so i didn't really have much time to weight the options...it was do it now or never. I was leaning towards trying a gluten free diet and knew i didn't want to go back on gluten if i felt better a few months down the line if i obtained health insurance again.

i cried when i got the negative result back. many people on here have explained that the biopsy isn't really as reliable as the doctors like to think it is. i understand it best like this...your intestine is something like 22 feet long. when they biopsy, they only take 4-6 samples (if you're lucky) which leaves 21.5 feet of intestine untouched. so if you're just in the beginning stages of Celiac, it's possible you haven't done enough damage to be found on the biopsy. Or you doctor may not have been looking for the right thing and missed the damage completely.

as far as i'm concerned, i have Celiac based on the positive blood result. again, so many people on here say that positive antibodies means Celiac, regardless of the biopsy. i'm awaiting the results from the genetic testing just because that's the kind of person i am and i have a burning desire to know for sure if i have it and if i carry the gene. i'm already gluten free (for 1 month tomorrow!) and feeling much better but i just can't let it go until i complete all the tests that are out there and available to me.

(hmmm...that was a long answer to a simple question...)

[Tyefromnj]

Its ok...I think I wrote a novel at the top so don't feel bad. I am just surprised that a blood diagnosis would not be the gold standard. I went to a chiropractor today for a consultation and mentioned the celiac test. He did some kind of wierd allergy test where I held a vial of gluten in one handand I had a little bit of muscle weakness, in one of my other, which stated that I had a gluten allergy. If that was the gold standard, I think we'd all be in a bit of trouble. I will keep you posted on my results and good luck yourself with your new diet.

~Tye~

[leadmeastray88]

I went to a chiropractor today for a consultation and mentioned the celiac test. He did some kind of wierd allergy test where I held a vial of gluten in one handand I had a little bit of muscle weakness, in one of my other, which stated that I had a gluten allergy. If that was the gold standard, I think we'd all be in a bit of trouble.

This is very interesting - my aunt, who is a natural healer (I don't think she is a 'qualified' naturopath) did this same test on me.

She made me hold a loaf of bread in my heands with my feet shoulder width apart, and watched how I reacted. Apparently if you are allergic your muscles weaken and cause you to lean slightly backward from the food in question. The opposite happened for a gluten free loaf of bread.

Obviously not a 'gold standard' for testing, but very interesting

[jewlesD]

hi Tye,

I am sorry your not feeling well. I know the feeling! I understand so much about feeling like a hypochondriac in front of family....I suffered with random symptoms for years, as well as GI symptoms and like so many people never put the 2 together. anyways, I am 25 as well and seemed to be pretty healthy for the most part, except for chronic stomach issues..this past month I ended up in the ER twice for what seemed like neurological symptoms too ( passing out, confusion) AND a terrible pain in my stomach with throwing up..anyways, the ER doctor suggested celiac tests, and turns out thats what it is. If your blood test come back negative you could always try a gluten free diet and see if it helps. I know a lot of people on this forum have negative blood tests but going gluten free seems to be the "cure." celiac test in general seem to be somewhat unreliable, and like so many have told me, your the best judge of your body and how you feel. see what your test says, but it might be worth it to try gluten free ( you have to stick with for awhile to really see results) I know it has made all the difference for me..i am an avid fitness person too and it sucks when you feel to yucky to exercise!! good luck to you, and please do not ever feel like a hypochondriac...you know how you feel and keep at it until you get to the bottom of it! many blessings,

Julie

[Tyefromnj]

Thank for your concern jewlesD. Actually I have bee gluten free for a week and a lot of my neuropathy and other symptoms have alleviated. But again i seem to doubt myself. If these tests come back negative then I will again feel like an idiot and embarrassment in front of my family. I will continue to try to be gluten free for the entire month and see how i feel.

hi Tye,

I am sorry your not feeling well. I know the feeling! I understand so much about feeling like a hypochondriac in front of family....I suffered with random symptoms for years, as well as GI symptoms and like so many people never put the 2 together. anyways, I am 25 as well and seemed to be pretty healthy for the most part, except for chronic stomach issues..this past month I ended up in the ER twice for what seemed like neurological symptoms too ( passing out, confusion) AND a terrible pain in my stomach with throwing up..anyways, the ER doctor suggested celiac tests, and turns out thats what it is. If your blood test come back negative you could always try a gluten free diet and see if it helps. I know a lot of people on this forum have negative blood tests but going gluten free seems to be the "cure." celiac test in general seem to be somewhat unreliable, and like so many have told me, your the best judge of your body and how you feel. see what your test says, but it might be worth it to try gluten free ( you have to stick with for awhile to really see results) I know it has made all the difference for me..i am an avid fitness person too and it sucks when you feel to yucky to exercise!! good luck to you, and please do not ever feel like a hypochondriac...you know how you feel and keep at it until you get to the bottom of it! many blessings,

Julie