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kay777

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  1. Funny...about the labwork....feels good to laugh! It took awhile to get the gluten out by making mistakes. Then when we had family over the summer for vacation I know I got glutened, not on purpose and wow did I get sick. Talk about moods! They may not want to visit again! After that I started eliminating dairy also. Just recently I started thinking about soy. This past week I had tofu....I wanted to see if it helped with the night sweats. Not sure....I think the best way to go, as you said, is to eat simply. After the doctor 's visit I felt discouraged. I thought if this isn't Celiac then what is it and why try soooo hard. I appreciate your response. I do think even though it is a weak positive it is positive and with my low regard of doctors as of late.....why does their response matter. Thanks again.


  2. Funny...about the labwork....feels good to laugh! It took awhile to get the gluten out by making mistakes. Then when we had family over the summer for vacation I know I got glutened, not on purpose and wow did I get sick. Talk about moods! They may not want to visit again! After that I started eliminating dairy also. Just recently I started thinking about soy. This past week I had tofu....I wanted to see if it helped with the night sweats. Not sure....I think the best way to go, as you said, is to eat simply. After the doctor 's visit I felt discouraged. I thought if this isn't Celiac then what is it and why try soooo hard. I appreciate your response. I do think even though it is a weak positive it is positive and with my low regard of doctors as of late.....why does their response matter. Thanks again.


  3. I don't know what long-term effects laxatives would have on the colon, but I'd say chances are good that other members will have some answers for you.

    As for the strictness - yes, CC is a real concern, even if you don't notice symptoms from it.

    You're not alone about others around you thinking you are exaggerating or going overboard. It seems most people just don't get it. But, some analogies may help. For example, explain that gluten is to a Celiac as a cat is to someone with severe allergies to cats - they can't keep a cat in their home, and just visiting someone with a cat can bring on a reaction. They don't have to even touch the cat. Just being near it is enough. Or a ragweed or pollen allergy. It's in the air in microscopic amounts, but that's all it takes. So though gluten intolerance is NOT an allergy, there are some similarities in how sensitive one can be to the offending substance.

    On eating gluten right before testing, that's not likely to ensure the accuracy, as it takes several weeks of gluten eating to just get the typical accuracy, which sadly isn't particularly high.

    Thank you for responding. My computer got a bad virus and it was being worked on all week. I have never taken laxatives so I don't understand why colon would look like I have...possibly from the gluten?

    Thank you for the analogies. I guess I am trying to understand how sensitive I am to gluten. Is the colitis caused by the gluten and/or bacteria?....I'm hoping an appointment with another GI will be helpful. I have been trying to heal myself because I have pretty much lost all faith in doctors, but I don't seem to be able to figure this one out on my own and frankly some days I am tired of trying. Right now I am trying to do the best I can with taking care of myself and just letting go....letting go? Hum? Thanks again...sometimes it just nice to know I'm not alone....or crazy.


  4. Sometimes I just have to think the bite though. ( In 12 step programs the quote is think the drink through)

    If I eat Gluten I will first feel a euphoria, I will then feel checked out of life for a little bit.I sooo miss that feeling. I may then pass out or "just lay down for a little for a nap"

    and then I will feel sick as heck. I will either poop my brains out or get constipated. I will feel like I am starving and over eat other things. I will be depressed, tired, and whine and grip till I can not stand myself. I will waste the rest of today and probably tomorrow because I will not feel like doing anything. I will feel hung over and maybe my head will hurt. Someone will comment on my gas or burping. I will feel like some small animal with claws is trying to get out of me.

    Today I now have a choice. I do not like the choice. Actually it ticks me off and I am working that through.

    I can go back to the half dead depressed person I was or I can stay away from the Gluten and the tiny thrill that it gives me. I think I now get why people get stuck on crack even thought they loose their looks and teeth.

    one more mile

    Thank you for your post. I am sitting here with a terrible headache...thinking what did I eat...how did I get this...I don't think I ate gluten...but maybe...anyway..Your post helped me say to myself...look go take a bath, see what you can do to move through this...it is Saturday. I really don't want to waste, yet, another day feeling like I'm dieing or drive everyone else nuts as well. I so relate to what you wrote. Thanks again. K

    P.S. Hope this posts right and also thank you to the person who started the post.


  5. I'm feeling sad today and tired of trying to figure out what is wrong with me. Yesterday. a 2nd doctor sort of just looked at me, knda like poor thing, kinda crazy. Both Dr.'s said my results were weak positve. IgG high, IgA high. I guess the weak positve was the tTg which was in the weak positive range. I had an endoscopy and colonoscopy done resulting in gastritis and colitis.

    The doctor said my colon looked like I had been taking laxatives my whole life. Which I haven't. My question to anyone is ...has anyone been told you your colon looks like this? Is that what a colon looks like if you have Celiac? I'm trying to figure out how strict I need to be. Do I need to worry about cross contamination or am I ok just staying gluten free. The gluten-free diet has helped alot of things...but I am still not feel as well as I would like. Don't mean to be melodramatic....it just feels like everyone thinks I am.

    p.s when I had the colonoscopy done I had been gluten free for a couple months and then ate gluten right before the test. not fun. I have since been gluten free for about a year with some unitentional glutenings. Thanks for any input.


  6. Hi Angie, I noticed you are from the Orange Park area and so am I. I have been wanting to make it to the Baptist support group, but I drive in Jacksonville all week long. I'm finding myself not wanting to go back on the weekend! I also notice you shop at Grassroots!! So glad they are here. Just offering, if you want, some local gluten free chit chat....I would love to find people close to home to talk with about....the gluten...casein...whatever thing!!! Hope your enjoying being in Orange Park. Kay


  7. Hey all,

    We are now in Jax. I'll volunteer my house for a meeting, unfortunately, June 21st is already booked on our calendar. What about the 28th? Warning, though, we left the majority of our living room furniture behind when we moved and haven't replaced most of it yet. As long as you don't mind folding and patio chairs, welcome aboard!

    Also, a friend recommended a store that just opened up, Grassroots. It is an organic market that does carry gluten-free items. They are mixed in with other products and takes some searching, but there is one close to our house. I've heard a lot about Native Sun but haven't ventured out to find one yet.

    Thanks,

    Angie

    newly located in Orange Park, FL. SAHM to Daniel (10), Millie (8-1/2) Type 1 Diabetes, dx'd 4/15/03 and Celiac dx'd 5/5/06, Steven (7) and Meghan (nearly 5). Wife to Paul, Active Duty, US Navy, Family Medicine Intern at NAS JAX.


  8. We're on!

    The room is at the Baptist Medical Center downtown on the 8th floor, the Doctors Dining Room. If it is the one I am thinking, you have to go through the cafeteria to get there.

    See you this Saturday at 2pm! :)

    Hi! Did you guys meet....are you meeting again? I just went back to this lead as a fluke? I have been wanting to connect with people in the area. Let me know!! Thanks!!


  9. I need as much support as I can get, if anyone in Jacksonville, Orange Park and surrounding areas (there are too many to name) or southern Georgia would like to talk let me know! I am just looking for support and friends, nothing else!

    I enjoyed cooking until this (hopefully someday soon I will enjoy it again), anything out doors (mountains since I am from CO, beaches here), being social, reading, movies and Im sure there is more but who wants to read all that right?

    Hey! I'm from the area! Orange Park...Jacksonville! I know you wrote this in Febuary...it is now June but what the Hey!


  10. Positive is positive! They have to draw a cut off number somewhere and you have reached it. There are researchers that would argue a positive biopsy is unnecessary.

    I was diagnosed solely on positive blood work about eight weeks ago and I HAVEN'T FELT THIS GOOD IN 13 YEARS!!!! I cannot tell you what an enormous difference this has made in my life. Yes, it can be an adjustment but what a difference to wake up without pain, D and depression. I can't eat dairy yet either and really, if I never can, I don't care. I can ride my bike with my kids! I can go to the store without a list! I am alive now!!! I'm toying with the idea of getting my master's now! Unheard of for me!

    Give up dairy. Get all sources of gluten out of your life. (there are lots!) Eat simple, low fat, gluten-free meals for a while and see what happens! You won't lose any thing and you might actually gain your life!! I know I did!

    Thank you for the support! I have been dealing with this for 48 years so I think I was a little impatient with the GI doctor's insensitivity. I don't think I will go back and will look for a more alternative doctor. I am working on taking the dairy and soy out today. My mood had been really up beat when I took the gluten out of my diet after finding out about my blood work from my primary doctor...except for a period of withdrawl....hmmm...wonder if it could have been from the gluten???? Do you have times when you question if you got some gluten in by mistake or did taking the dairy out pretty much clear things up? again thanks for the support.


  11. Are you still consuming dairy? That is a possible reason why you still have diarrhea despite being gluten-free. Try eliminating all gluten and dairy (and I'd recommend soy as well) to see if it makes a difference.

    I am still trying to understand how to work the forum and gluten...now I am moving on to dairy and soy. I had just started to add soy and not completely taken out the dairy, but I had a feeling the dairy had to go...never thought about soy, but I have been reading about it and it sounds like it needs to go too. I'm getting ready to go back to work tomorrow after being off and working at home for awhile and dealing with my meals...figuring out lunch and breakfast for 5am feels like a full time job? Any ideas? P.S. Does itchy ears have anything to do with dairy...and how did you find out you were allergic to potatoes....I crave them! Thanks!


  12. I have been reading the forum for a couple months trying to learn what is going on with my health. When I was 2 years old I was in the hospital for diverticulitis and I don' know about infancy, however, I have had digestion, fatigue and anemia issues ever since. Here's the deal. I had asked my doctor to test me for wheat allergies and it came back:

    (tTG) IgA 4 weak positive 4-10

    Abs IgG 21 Positive>9

    Abs IgA 7 Positve > 4

    Endoscopy - Gastritis

    Colonoscopy - Colitis

    My doctor does not seem to understand that I would be releived to know that the problem was gluten and could get better. He still is not convinced that I have Celiac. due to the negative biopsies. He has me taking Pepto Bismo for 6 weeks and then the swallow the camera capsule deal. These tests are expensive and I guess what I'm asking is ...is the bloodwork enough to go on and the fact that I feel better on the gluten free diet. My concern is the "d" as everyone puts it has not gotten better and makes me nervous that there is something else wrong and it is not related to the gluten. I so just want to get on with my life and take care of the "d" and have some energy for a change. Would love to hear your thoughts! Thanks in advance!


  13. I had this done too, I even had been eating regular food for 6 months and everything was fine so I continued to eat regular food now I a really paying the price for not sticking to gluten-free

    donna

    Hi! I'm new to this forum. I wondered how does this procedure help diagnose for Celiac. My doctor wants me to have it done after I have taken Pepto Bismo for six weeks because my colonoscopy showed I have Colitis. I also had an endoscopy done and it showed gastritis not Celiac. I have positive bloodwork, however, he does not seem convinced it is Celiac. I'm getting discouraged.