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About Kitt1027

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  1. Yes, yes, yes it is very normal to get like that. Before I found out I had a gluten-intolerance (not officially diagnosed Celiac...) I just thought that I would get extremely lethargic and have brain fog only after heavy meals. But, then it was happening almost everyday and now I know it's because even though I was eating very light meals, I was making wraps with wheat tortillas!! Everyday!! Geez...makes so much sense now. I would be sitting on my computer at work and literally feel like my head was a million pounds, my eyes wouldn't stay open and I felt like if I put my head down on my desk I would just pass out immediately. I would just go get some caffeine, but it never fully helped and the fogginess lasted all day.

    I got glutened twice in the past 2 weeks and both times I was ready to pass out 30 minutes after eating. My boyfriend knows about my gluten problem and now he can tell exactly when I've been glutened because I become lethargic, unmotivated, snippy and don't feel well. Sometimes it feels like I'm drunk or something. It's so weird. And now I know that when I'm completely off of gluten, I am free to be the real me! I'm so much more energetic and want to go out and do things and I'm always peppy.

    So, that's a very long-winded way of saying you are not alone my dear!! :-)

  2. Hello all! Ok, so I got what my Dr. called the "Celiac Panel" run a couple weeks ago on my blood. I had been trying to eat more gluten for a week before the test (but don't think I ate enough) and the week before that was almost completely gluten-free and before that I was eating whatever I wanted.

    Ok, so here are my results, please provide any insight. I already know they didn't do all the tests they should have...

    Tissue Transglutaminase Antibody, IGA My result: <3

    Negative scale: <5

    Equivocal: 5-8

    Postivie: >8

    Immunoglobulin A My result: 119

    Reference Range: 81 - 463 mg/dl

    Gliadin Antibody (IGA) My result: <3

    Negative: <11

    Equivocal: 11-17

    Postivie: >17

    Now, I know that these tests really aren't quite enough...but please let me know what you think. I remember seeing once that someone asked in here if a person could have the antibodies in their system at all if they weren't Celiac or gluten-intolerant? But, I don't remember what the answer was...

    I will appreciate any feedback! Thanks!

    Kitt :rolleyes:

  3. I did the same thing when I had my blood tests just last week. I was really nervous that my GP was going to be an a-hole about it b/c he can sometimes be like that...depending on his mood. haha. Anyway, I just decided that it was important enough to me and so I kind of bent the truth and said my grandma was recently diagnosed. It was almost true, except that she has several symptoms of Celiac, but no official diagnosis. She has rheumatoid arthritis, lactose intolerance, psoriasis, and I don't know about the other symptoms.

    Anyway, it was like flipping a switch. He was like, well Ok, let's get those antibodies checked. he ordered the Celiac Panel. It was alot easier than I expected. (BTW, still don't have results back)

    Just remind yourself that you are the patient in this case. You are asking for tests that you will have to pay for. The doctor doesn't have to do anything other than order them. So, you deserve whatever test you ask for!

    Good luck and congrats in advance on being a Dr. someday!


  4. TrillumHunter:

    I too was told by a dr. that "it could be Multiple Sclerosis." That was really great. Didn't freak me out at all! geeez.

    I too have thought more recently that it could be MS, but then I started learning more about Celiac and thought, OMG, that sounds more like what I have. And really, I hope so, cause MS? Um, yeah, MUCH scarier!

    Thank you all again. This is great.


  5. Thank you all so much for your stories. They have really made me feel better...even if you aren't happy, I appreciate your honesty. That is real and this is real and I'm just trying to prepare myself. :D

    I'm kind of wondering how I am going to feel if my tests come back negative. I have read on this forum that false negatives are common. I really tried to eat more gluten products for the week 1/2 before the test. Before that, I had tried going gluten free for a little over a week, but that was it. I am pretty positive that I still had enough gluten in me to bring back a real result. I will be kind of pissed if they are negative, because then I just have to keep wondering what the deal is with my body and mind.

    Either way, I'm eating gluten-free, other than a couple slip ups. Right now, I'm not feeling much better because I've only been gluten-light for the past 4 days and before that was glutening up for the blood tests. So, my body is really confused and it's showing me its' confusion.

    Thanks again for the support and I will definitely come back with my results when I finally get them!


  6. Hi there! I had the Celiac Panel blood tests run 2 days ago, but have not gotten results back. I know it may take a while...

    Anyway, I'm feeling really nervous about it. Half of me hopes they are positive so I can have a definitive diagnosis and finally be able to make sense of all the symptoms over the years. But, half of me worries that I may feel an unexpected depression at the idea of having a life-long disease and being gluten-free forever (already on anti-depressants, so I'm used to it. lol) Anyway, I just want to throw the question out to you guys who have been diagnosed.

    How did you feel when you actually got the definitive diagnosis?

    Thanks! I will appreciate your feedback!


  7. I can relate - and this is just an added symptom to make me believe I have Celiac. I have not yet been diagnosed, but having blood tests Wedesday.

    About 3 years ago, I went to the dentist because I was having alot of tooth pain and I thought I may have cavities. I don't eat alot of sugar either, and never have. Anyway, at this point, I was about 20 yrs old. The dentist told me that I had worn through about 2-3 layers of enamel. I have to add that I have had a major problem with grinding my teeth since I was a child.

    When my permanent teeth grew in when I was a kid, we noticed that I have a white patch on both of my front-top teeth. I was told back then that it must have been from a childhood illness...My mother and I do not remember me having any kind of childhood illness when my teeth were growing in. But, we just figured he was right and moved on.

    I seriously cannot wait to get my blood tests back. And if an added bonus of going gluten-free is that I can stop losing enamel so quickly and maybe stop grinding--well it is soooo worth it. Any comments or thoughts?

  8. I got my tests results back today.

    Two out of the three tests he ran, were positive and indicative of celiac :rolleyes:

    Not exactly sure how I feel about that - I mean, I feel optimistic, because things can only get better from here, I hope!

    It's a very bittersweet diagnosis.....

    Wow Jessica! I haver read a couple of your other posts and know you were waiting. Congrats on getting clear results...And I know how you feel. I haven't even had my blood tests yet, but part of me wants them to be positive so that I can put a name to all of the symptoms and suffering.

    Good luck with going completely gluten-free! Just think about how much better you are going to feel! :D

    I'll definitely post my results one I get them. How long did it take for yours to come back?


  9. Howdy! I looked this topic up specifically because I have lost weight on the diet. I lost about 3 lbs in a week of being gluten-free. I do want/need to lose weight, so I feel like it is a benefit and if even makes me more convinced that I have an issue with gluten. I have ALWAYS had a really weird appetite. Ever since I was a kid, I have had some days where I just wasn't hungry at all and others where I was ravenous and couldn't get enough. It was like I was a bottomless pit. I think that for me, the gluten not digesting and all has made my body think it is more hungry, so I would eat more. In about 2-3 days of starting the diet, my appetitie almost disappeared...no joke. Like, I could still feel hungry, but not at all ravenous like before. It was more like "oh, i guess i'd better eat" instead of "omg, if i don't eat now I am going to strangle someone."

    Anyway, I have my blood tests this Wednesday, so I hope I can figure something definitive out. I have been eating gluteny stuff for the past 2 days to get ready for the test...I hate it. I was feeling so good and watching the weight fall off with no gluten --I am definitely going back to gluten-free after the blood tests. No doubt.

    Bye for now!


  10. Deb,

    I do appreciate all the new information. Really....a great deal. I'm finding there is so much to learn and I am having to narrow the new information into the scope of the things I'm actually dealing with right now, rather than all the "extra" stuff that just overwhelms me. All the details about genes and antibodies for example. I do want to learn all that one day, but right now it's just too much. But as I type here right now having little annoying electrical impulses jab into my feet...these are the things I need to focus on now. My brain seems too small for all this info at times, but little by little, with the help of people like you all, I'll get it!

    I am so sorry your friend has to deal with all that with his feet! How horrible! and potentially dangerous for him!

    I have been doing the "bug" thing for several weeks. Never put the two together until your post. I also have noticed in the last month or so...hard to tell when it started...that I occasionally get this feeling on the right side of my forehead...it's hard to describe...it FEELS like if there was enough skin there that it would droop like Bell's Palsy. But it's like that area gets a heavy feeling, like the nerves are turning off for a minute or so. I don't know that it's neuropathy related, but I should get everything checked out.

    I will be calling my GI tomorrow. I have my 4 week follow up appt to the Celiac diagnosis on Wednesday, but I'm going to mention the neuropathy to the nurse tomorrow and get a feel for what they want me to do. That way I'll know if I'm gonna hit a brick wall on Wed. or not. I also think, since I used to be a nurse myself, that I can talk to his nurse and get a good feel for where he stands on his Celiac care beyond initial diagnosis. Should be interesting.

    Thanks so much for your help!


    I too have had the sensation of bugs all over me, but didn't put it together until I read these posts. I've had alot of neuropathy symptoms...I even went to the dr about 3 years ago complaining of the tingling in my arm and leg down to my foot. It sometimes just felt like tingling and sometimes felt like pins and needles. At the dr. they did blood work, but did not test for celiac or anything. My cholesterol and whatever else they tested was fine. The dr. even mentioned Multiple Sclerosis...let me tell ya...that was NOT fun at 21 years old to be thinking I could have Multiple Sclerosis! It was the health center drs at my college, so I think they really weren't too well trained in how to NOT scare students. Since then, the tingling has waxed and waned. More recently, I've had balance issues where I felt like I was about to fall over and had an afternoon where for about an entire hour I was shaking really bad. All of this stuff, put together with the gastro symptoms, depression, etc. have me more convinced than anything. I am going to get the blood work done next week and I will tell the Dr. about my neuropathy symptoms too.

    Good luck with all of your symptoms!

    We will all just have to stick together! Remember to take it one day at a time.


  11. I DEFINITELY have the same issue. My hair seems to fall out ALOT, but I have alot of hair so it still doesn't look thin. However, my hair has definitely changed over the years. My hair stylist said she noticed a change in my hair over the past 4 years. She says it seems like it's thinner and the texture is not as smooth. I know I've always had tons of hair all over the place, but I think it's definitely more than it should be.

    I have psoriasis too, so I already have the scalp issues. I am pretty sure that once I'm gluten free for a long time, alot of these weird things will go fade away.

    Good luck! :P

  12. Oh and forgot to add the strange things I've noticed over the past week, almost completely gluten-free.


    ~ I have had very twitchy eyebrows - from what I've heard it's lack of potassium (so i'm eating bananas)

    ~ This very obvious spasm on my left side - like maybe my large intestine? It lasts for about 5-10 seconds and I've only noticed it about 3 times in a week.

    ~ Dizziness - BUT, I will add that I was having dizziness before I started on gluten-free. i know that the most recent dizziness is probably from lack of food/nutrients since I haven't been eating much.


    ~ More energy

    ~ little to no brain fogginess

    ~ better mood/more chilled out

    ~ less tingling in my arms, fingers


    That's all I can think of now. Ciao!

  13. Shay and GFin - Thank you both for your input!

    Shay - I haven't gone as far as working on my pots and pans and checking my shampoos and lotions. I will do that next. I did check online to see if my medications are made with any gluten and thankfully, they are not. Mainly, I'm just checking all the labels on everything and eating alot of veggies and lean meats.

    I've felt alot better, but I think I messed up yesterday or something. I had a salad from Wendy's - I had gone online to see if certain things were ok at fast-food restaurants, but of course missed that one. So, I had the Chicken something salad with grilled chicken. I think there was either cross-contamination or they used something when making the chicken, but I immediately got SOOO lethargic. I was sitting at work feeling like I was going to pass out and got a major headache. Before the salad, I felt really good. I was completely awake and alert. After the salad, it was like I had taken a sleeping pill. That's the effect I get after big, heavier, probably gluten-filled meal.

    Now, for a long time, I have attributed most of my headaches to seasonal allergies which I've suffered from for years. I wonder now if it's the food!

    I will call to try to make an appointment for the blood tests very soon. I will keep y'all posted!

  14. Hello all! I am very new to this site. I've been hearing about Celiac for a couple of years now, but before that didn't know it existed. When I first heard of it and the symptoms, I suspected that I had it, but didn't do anything about it. Honestly, I think that if I do have it, I have had it since I was a very young child, if not from birth. Therefore, I