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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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    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
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      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
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      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
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