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Diagnosed A Week Ago


DakotaRN

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DakotaRN Newbie

I was diagnosed a week ago. I was in denial until the Doctor told me that both the blood tests and the biopsy were positive. I was also angry for awhile but now have accepted it and decided that this is just going to be one of lifes challenges. I have found this site to be very helpful. Thanks for being here.


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MELINE Enthusiast

Hello! Welcome to the forum.

Believe it or not, things are extremely easier as time goes by. Feel free to ask anything you want.

Meline

weeza Newbie

I feel your pain. I too am new to this. About a month now. Some of my symptoms are gone but some remain. I am also trying to turn this into a positive by changing my attitude. We can go on this journey kicking and screaming or choose to accept and find it an adventure to better health. Good luck to you.

wschmucks Contributor

Welcome, this board REALLY helps. I would feel so lost without it. The next few months are going to be hard. Just read as much as you can, dont eat out at resturants and try to eat as much whole food as possible so you dont get glutened. I got glutened probably every week for the first 6 weeks...then it stopped....and i got better at it. Try to be patient with yourself, do your best, and remind yourself that this is going to get better. One day you'll wake up and realize you just do it all automatically (im not there yet--only 3 months in...but thats what i tell myself).

If you have any questions ask away, and dont be afraid to call the #s on teh back of boxes.

ravenwoodglass Mentor

It will take some getting used to but you have found a great place for info and support. Welcome to the family. Almost everyone has some ups and downs and some of us who experience the neurotoxic effects can even go through a withdrawl. Hang in there and you may find you feel better than you ever remember soon.

Make sure to encourage everyone in your family to at least get the blood test done, even if they don't think they have symptoms.

cat3883 Explorer

I have been gluten free for 3 1/2 months now. Wow I feel so much better. But the first few weeks were a little rocky for me. I had insomnia and headaches. After that I felt so much better and still do. I am thankful that I can control my disease by what I put in my mouth. Other people arent as lucky with their diseases. Good luck to you. You will find soooo much information on this forum

Klauren Apprentice

Hey, I was diagnosed about a week ago too. I hope we both figure this out and heal quickly! I have been asking a lot of questions here and fingers crossed some of the veterans will give me feedback. I have also spent a lot of time researching on the internet and talking to others in my social network that have Celiac. I have been mentioning it to everyone I talk to because I am on a mission to raise awareness and if I help even one person, I will be thrilled. Through talking to people I have learned a lot and I find everyone with knowledge is very willing to share. So my suggestion is tell people in your life and you are likely to find your way to others who have been living gluten free and can give you some pointers. Some of the people I have met this way - through friends - are offering to take me shopping and show me how to buy foods that are gluten free. There is a network of tasters and experts on this forum and probably near you.

Good luck! Keep me posted on your progress. Best, Kim


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Mel is well Newbie

Hi,

I was diagnosed about 3 weeks ago. It really stinks. I feel your pain. I have had no digestive symptoms, but was having numbness in my face and arms, and muscle cramping all over.

I'm so tired of people saying, "Well, you'll probably lose a lot of weight!" (I'm not overweight). As if they think I'm now on some sort of great Atkins diet! I'm learning how to eat, but I think I end up eating gluten about every other day. Today I went to Taco Bell for lunch. I ordered 3 hard corn tacos, thinking I was being smart. Well, I found out they were full of gluten, after I gobbled them down. Oh well, ya live ya learn. Anyway, I've found a few things that help:

1. Check your local library for the book: Celiac Disease, The Hidden Epidemic. This is a great book for info on all areas of this illness.

2. Ener-G Pizza Crusts - You can order them off of (Company Name Removed - They Spammed This Forum and are Banned) and get them a lot cheaper than the health food stores, plus no shipping or tax. They are soooo good. The thought of having no more pizza was one of the most depressing things for me.

Good Luck!!!!

EazyE Newbie
I was diagnosed a week ago. I was in denial until the Doctor told me that both the blood tests and the biopsy were positive. I was also angry for awhile but now have accepted it and decided that this is just going to be one of lifes challenges. I have found this site to be very helpful. Thanks for being here.

Hi, I was diagnosed almost a month ago now and in some ways it's getting easier and others much more difficult. I'm fine at home, I'm prepared and know what is safe. And I am feeling much better. So I'm hoping my intestines are starting to heal. But. . . going out, work and to restaurants, UGHHHH! I feel like I am some gluten addict :) People are eating homemade cupcakes, doughnuts, pizza, and beer! I want it so bad ! I keep trying to say positive thoughts and remind myself that I am in control of this disease. And people with cancer would love to just be able to not eat certain things and be well. But it's still hard, I still want that cupcake. . .

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      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
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      Thank you I will i have been on a strict gluten free diet ever since I got diagnosed but sometimes places lie about there food so there r some things that do get contaminated which causes me to throw up on end for several hours until I can't hold myself up anymore 
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