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Just Got The Phone Call!

BrittLoves2Run

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BrittLoves2Run Apprentice
BrittLoves2Run
Posted

I just got a phone call from my doctor's office stating that I am positive for Celiac. They said my numbers were abnormally high indicative of Celiac. I almost cried when I heard this. I no longer feel crazy and i'm looking forward to feeling normal and healthy again!!!!

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revenant Enthusiast
revenant
Posted

This is wonderful news! I'm so happy for you, and the next chapter of your life

Lisa Mentor
Lisa
Posted

Great news!!! Your recovery is in your hands and we are here to help guide you to feeling wonderful again :D

love2travel Mentor
love2travel
Posted

Great news for you!

Many of us also went through a short period of gluten withdrawal. I did - I felt ill (not terribly) and dizzy and extremely hungry for about a week then that disappeared. Just sort of warning you in case it happens to you - it may not!

Either way, you are on your way to a whole new world. Poke around this site - there are incredibly knowledgable people around who are willing to respond to any questions. :) Lots of interesting and helpful topics.

Just focus on how awesome you will feel! Looks like you are already.

BrittLoves2Run Apprentice
BrittLoves2Run
Posted
  • Author

Thanks everyone. I'm so happy. I went out to Common Market tonight and bought a bunch of gluten-free foods and even got a gluten-free vitamin and toothpaste. It's going to be a lot of learning and researching but i'm so glad I'm pointed in the right direction. I called my mother to tell her she should consider getting tested as well.

navigator Apprentice
navigator
Posted

Thanks everyone. I'm so happy. I went out to Common Market tonight and bought a bunch of gluten-free foods and even got a gluten-free vitamin and toothpaste. It's going to be a lot of learning and researching but i'm so glad I'm pointed in the right direction. I called my mother to tell her she should consider getting tested as well.

I hope your Mum pays more attention to you than I did to my daughter! My daughter was diagnosed in March 2009 and immediately told me I should be tested. I had been very ill at the end of 2008 and my ferritin was 4. I picked up a bit but was never 'well' (just didn't realise I was ill). I then went downhill again in summer of 2009, thought I was anaemic again but tests showed I was only borderline. My daughter kept telling me that she thought I had coeliac disease and that I should ask to get tested. Don't ask me why but I was completely convinced that I wasn't coeliac and ignored her advice. To cut a long story short, I got very ill and eventually had to give my career. I went to the G.P. my daughter attends and he immediately told me that he was 90% sure that I was coeliac and following blood tests, endescopy and biopsy I got official diagnosis. If I'd listened to my daughter in the first place I would still have my career. She loves being able to say to me 'I told you so' !!

I'm now eight months down the line and have improved greatly. I still get the odd bad days but on my really good days I feel better than I have at any point in my life. Tell your Mum my story if she's reluctant to get tested.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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