
Lyza Jay
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ok so my ttg on my most recent test hasnt been sent to me, but my ttg for my "positive" test results from when i was eating gluten, i have.
TTG - 5
Negative is < 20
Weak Positive is 20-30
I got my results back from my small intestine biopsy and the doctors said that it was soo clean and healthy that it is hard for them to believe I have ever even had Celiac before because in most cases you can tell there has been damage to the small intestine even though it is healed... are you KIDDING ME!??! So, I dont know whats going on. She didnt say for sure but she is going to go through all my old records and check out everything... this is NUTS!
She also said i have a very very mild case of gastritis. So we are taking care of that.
I have a feeling a gluten challenge may be the only way to tell. She keeps saying steroids... I keep saying no. Id much rather do a gluten challenge for 3-4 weeks than take steroids for 6 months. I think. Would enterolab be better? I have a feeling they are going to go up the other end to check things out too. Better safe than sorry right?
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Ok, an update.
I have my "positive" blood tests and my "negative" ones, but they are measured differently.
Let me know if any of you understand this.
POSTIVE RESULTS Feb 2004
IgA- 10
<20 -negative
20-30 weak positive
>30 Moderate to strong Positive
---sooo... this was negative
IgG- 70
<24 -negative
24-30 - weak positive
> 30 strong positive
--- this is the only positive in the panel that I had
NEGATIVE RESULTS Oct 2006 (after being gluten free since the first one)
IgA- 3
<11 - negative
11-17 weak positive
>17 positive
---- again, negative
IgG - 4
<11 - negative
11-17 weak positive
>17 positive
--- this time its negative.
So did i ever really have Celiac? I dont know why only one thing was positive and not the other.
I did go in for my endoscopy today. They didnt find anything but redness in my stomach that they are testing to see if it is a parasite or bacteria or just in flammed...etc. I get results from the biopsies that they took next week. im still groggy from the procedure.
Do these blood tests make sense to anyone?
Does this ever end?
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Hello again everyone.
Still not well and eating the BRA diet for the next two days to try and soothe my insides. (As opposed to the BRAT diet since I cant eat Toast. So only Bananas Rice and Applesauce.)
I went in for my Ultrasound and should get results this week. I asked my doctor for a copy of my blood results and she "forgot to leave them at the front desk and had left for the day"... great. She also forgot to test my B12 which i specifically asked for... this is going reeeaaallly well. As soon as i recieve those I will post them. Some of my blood tests I can get online...such as my Iron and RBCs and those sorts. I feel like my iron is low but she said its still in the normal range....
I asked her about the Biopsy. She wants to make sure I am healing or healed. Although they never did the biopsy in the past, so I dont know what they will be comparing it too. I dont know why she isnt going the other direction at the same time... is that something I should request? Also, maybe they will find out it is something else like someone said in one of the replies or a different type of Celiac Sprue as well.
Im really thinking about doing Enterolab. The only thing keeping me back is $$. Maybe an early christmas present from the parents?!?!? hah. I think its a good plan.
Ok, the rice cooker just went off. Thats my que for breakfast.
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Hello again.
Thanks to everyone.
The doctor left a message on my answer machine saying my blood tests are normal and that my Celiac panels were in the negatives!?!? You gotta love the answer machine lab results, i have no clue what she means by that and apparently she cant find the test results from when I was diagnosed gluten intolerant in my records... (its a different doctor, but the same records... COME ON PEOPLE!
) So she has nothing to compare them to. So, Im guessing negative is good. But still, since she can't compare yet, she can't say whether or not I am Celiac!?!? Are you kidding me? Again,
!!!
Also, I specifically asked her to test my B12, but on the answer machine she didnt mention that. Needless to say I am calling her constantly today to talk to her about all this.
I do have an ultrasound tomorrow and am praying that they dont find anything lurking in there... It will be cool to see my insides... ha ha. I just hope there is nothing inside of them.
I guess it does make sense to have the biopsy to see if my intestines are healing but wouldnt my blood test come out positive then? Or at least have malabsorbtion and low vitamins in my blood?
The steroids scare the shnikees out of me. I will not take them unless I feel it is the only thing left. I dont think I am as bad as the not healing intestine if my blood was fine. It would make sense if I was though.
Whoever mentioned the tumeric and ginger... I put mustard on everything. I carry it in my purse so when i go out I can put it on salads or ... anything! But, it has tumeric in it, Im not sure how much but I am going to look into this. I also love ginger. Maybe ill try to find and eat more of it.
This disease drives me nuts... It sounds so easy to cure, you eat gluten free, no meds etc. But, it has so many elements and side effects that its so hard to pinpoint everything. Symptoms of MS from gluten? Why isnt this well known around the world? Why are people afraid to live without bread?!?! This drives me NUTS!!! Ok...well, I erased the rest of my "venting" but yeah. It makes me go crazy!
Im also finding that us Celiacs are so much more "in tune" with our bodies.
There was a time when I lived in the Islands that I had never felt more healthy. Im going to try and think back to what my diet was there (because it wasnt much, but at the same time all natural and just the right amount) and maybe try to eat like that again. Ill let you guys know if you are interested.
I really appreciate everyones help in here. I feel really comfortable just to ramble (obviously) because you know what I feel like and what I am going through. If anything it is so theraputic. I really feel like I am not alone anymore and I can fight this. Thank you.
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HI everyone. I am pretty new to this forum but not new to the gluten free diet.
I have been gluten free (to the best of my ability) for 3 years now. My symptoms were the big D and throwing up to the point where I wouldn’t leave the house and if i did, I wouldn’t eat the night before or day of. The doctor told me that taken gluten out of my diet would be too extreme and that i just have IBS. Well, i think IBS is just a label for "i have no clue what’s wrong with you" (sorry if that offends someone but seriously look deeper into it if you have it) so i did research about gluten and brought in a computer print up of the blood tests and wouldn’t leave the doctors office until she agreed to give it to me. The blood test came out positive, the doctor told me I was Gluten Intolerant and sent me out the door to live life in a glutenous world... little did i know how glutenous it really was.
So, basically I have learned everything on my own and am now catching on to reading these boards. Recently I had a really awful gluten attack that seemed to take me back to day one. Scared to leave the house, scared to eat...etc. I also lost a lot of weight in a really quick amount of time. Finally a different doctor sent me to a GI. (which i didn’t really know about). The GI knew about Celiac but left me hanging with some questions and weird ...things. So here are my questions and weird...things.
1. She wants to give me a biopsy now... I don’t see the point, I am not eating gluten. Could this mean she is testing for something else? Should I refuse and do Enterolab instead?
2. She is sending me to get an ultra sound of my abdomen... too look for "growths and rule out anything else it could be" (we all know what that means
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3. She said if I don’t start feeling better or gaining weight she was going to put me on steroids?!?!!??! WTH?! Has anyone heard of this before??!?!?
4. And, if all those don’t work she is going for the thyroid.
5. I have started having tingles in my legs... MS!?
6. I have never been fully diagnosed as celiac… or have i?
7. Is there something they aren’t telling me?
My mom rolls her eyes at me when i tell her that there is no point for the biopsy now. She says to "trust the doctor and stop reading the internet" ...it’s just so frustrating and hurtful. She doesn’t get that if it wasn’t for the internet, i would have never gotten the gluten diet or blood test! She also admits that she has done no research about this so… of course this has caused a lot of tension which doesn’t help the stress I am under. I was adopted so there are no relatives who can relate to me.
I am at a loss and scared of the outcome of these tests.
I am confused and frustrated.
I feel like I have done what I can.
And most of all I seriously feel like my body is dying without me, and I am starting to be ok with this.
If anyone has answers or insight on any of those things please let me know.
Reading these boards have really started to refresh my hope. Thank you for reading this… long post.
Lyza
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This has made be cry, both from laughter and just joy that people understand where i am coming from!
... you can read an ingredient label with over 100 ingredients in 10 seconds flat.
... you tell people you have a wheat "allergy" so that they will take you more seriously.
thanks everyone!
My Trip To Vegas
in Traveling with Celiac Disease
Posted
I just went for the first time 2 weeks ago and I found them to be gluten friendly as well.
Don't forget about Chipotle and In-In-Out. Both of which are gluten friendly. Also, Le Cafe in Paris!
So fun!
(I've also been to San Antonio. You're right, they really weren't as gluten friendly now that I think about it. We had to go to grocery stores to pick up some extra things that I could eat.)