Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Excited To Be Here - Looking For Support


FoxersArtist

Recommended Posts

FoxersArtist Contributor

Hello everyone!

I am new here and this is my first time posting. Forgive me if the title of my post sounds too up-beat but let me explain why I am "excited."

I am a 24 yr old female and my whole life has been filled with health issues. I have had GI problems since I can remember and being in a lot of pain has always been normal for me. During and after 2 pregnancies in the past 3 years my health took a major dive. It seemed that every other thing I ate was causing me to run to the bathroom, aches and pains increased to unbareable levels, and finally I started having loads of neurological symptoms including gait issues, fainting spells, numbness, swelling & turning purple, headaches. I was so fatigued that I could hardly do even the smallest activity without feeling totally zoned out afterword. Even fun activities like going out to dinner with friends was so draining that I felt miserable and disconnected. I was sure that I was dying or that I had some horrible, rare disease that would leave me wheelchair bound by the end of the year or worse.

I have been seeing a wonderful pathologist who keeps promising that we will find whats going on with me, at least, eventually. There have been some small clues and we knew whatever it was was auto-immune. He tested me for celiac disease and other auto-immune diseases monthly, hoping that at some point one of them would finally show up. I have been praying daily for an answer, any answer, just so I would know. Last month I had a colonoscopy and they took a bunch of biopsies. This past Friday I got my biopsy results back saying that I had tested positive for celiac sprue! I was horrified and overjoyed at the same time. I think I still am...

Food is a major deal to me. Even though I have been trying to eat healthy for the past 8 months or so, I still have a major attachment to sugar and other foods that are really bad for me. Finding out that I have celiac disease was a major blow when I realized how many things have gluten. I paniced and rushed to the store to buy some different flours and began exerimenting with making chocolate chip cookies - and I made a mean peanut butter choco-chip buckwheat cookie, too! I did as much research as I could on restaurants that support people with celiac disease and we went out to eat last night, gluten free, for the first time.

"Hi, my name is Anna and I have been gluten free for 3 days. I looked at a piece of bread once. I picked it up and squished it. I smelled it. Then I put it down and walked away. I will continue to press forward in my recovery."

The truth here is that I am 3 days into the "recovery" of my body and already I have clarity of mind again! My since of humor is back. I don't feel like a zombie. This morning I woke up and it didn't take me half hour to get out of bed. My knees were not stiff. I thought to myself, does healing happen this fast or is this all in my head? Whatever it is, it's working and that makes giving up my sacred Fererro Rocher (something I could have eaten for breakfast, lunch, and dinnder for the rest of my life) worth giving up. I am happy to be here and happy to be feeling better. I know I will have highs and lows. I know there will be times when all I can think of is a piece of pizza with extra cheese, mushrooms, and sausage.

Also...we are in the process of having our almost 2 year old son tested for celiac. He has all of the classic child symptoms and regardless of their findings, I think we're just going to try out a gluten free diet with him to see what happens.

Thanks for listening!

-Anna


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Susanna Newbie

Hey, Anna--welcome to the boards! My brother, too was excited to finally get a diagnosis of celiac, after 20 years of GI problems. I had symptoms "only" 4 years before my diagnosis, and my son, now 12 got diagnosed when he was 10. We are ALL SO MUCH HAPPIER AND HEALTHIER LIVING GLUTEN FREE! So, it is great to see you excited. Here are my newbie tips--hope they are helpful:

gluten-free newbie tips--now you can eat to treat, and soon feel better. Here are some key coping strategies to get you started.

1. Know that you will grieve your old favorite gluten-filled foods. I actually tear up when I see a brioche sometimes (and you might get misty if someone eats a Ferrero Rocher in front of you!). Grieving is normal, BUT IT IS NOT EASY OR COMFORTABLE. People around you will eat treats you can't have and you will feel sad and isolated. Strategy: stock your car, office, purse, backpack, secret drawer at home with gluten-free treats you can reach for any time you are feeling deprived. This really helped me. I recommend Baby Ruth Bars, Snicker Bars, Lara Bars, Dove Dark Chocolate, meringue cookies, macaroon cookies (read labels), Butterfinger, Reeses Peanut Butter Cups. You get the idea. Also

ShayFL Enthusiast

Welcome....you are among friends. :)

I am excited for you! And you are feeling results already, so I am a bit jealous too. I have neuro symptoms and they can take a long time to heal.....so I must be patient. And listen to everyone else chart their progress.

Cookies are the easiest and yummiest things to make gluten-free I have found. I made some teff/almond butter cookies a few days ago and we all fought over them. My DD said they were the best cookies I have ever made. Pumpkin muffins were a hit and creamy buckwheat the other night was ubber yummy with dinner. I am keeping positive and enjoying experimenting. Tonight I am making an applesauce cake. :)

KimmyJ Rookie

Welcome! It's so great that you are feeling better and sounding so positive! It's great to finally have a diagnosis and move on with life, isn't it?

katebuggie28 Apprentice

Hi Anna. I too just started out. 05/15/08. I am actually self dx. I felt hopeful when I realized how much support there was, and I was glad to see that I wasn't the only one. ( I started to think I was crazy and dying) I am feeling very defeated right now because I am conditioned to be afraid to eat due to the pain. I have tried to branch out the last 2 days, but I got sick anyways. :( I will keep marching on....good luck.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

    2. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Son's legs shaking

    4. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

    5. - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748

    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.