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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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      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
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      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
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