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WinterSong

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WinterSong Community Regular

I wanted to say thank you to everyone on this forum. 

 

I've been reflecting a lot on where I was 2 1/2 years ago. I was the first of my friends to be diagnosed (since then, several of my friends/family have gone gluten-free), and during a very difficult and emotional time in my life it was a godsend to know that I wasn't alone. I had friends with funny screen names who would answer my questions, calm my anxiety, or share in my frustration.  

 

I see posts from people who are struggling or are newly diagnosed, and I see people reply who have been on this board consistently for years. The unwavering support that we have as a community is an incredible thing. We are impacting each other's lives in a truly meaningful way.

 

To those on this board who are new and feel like you are alone or aren't understood by your friends/family - it does get better. You are not alone. We are here for you.

 

I am proud to be a Celiac. I am proud to be taking charge of my health. I am proud to be a part of this wonderful, supportive community. We are awesome.  B)


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notme Experienced

me too!  i would have never been able to navigate these strange waters without the help of the many kind people on this forum :)  everybody starts at the beginning!!  i'm glad you are feeling better!  (i am too!)  it truly is a huge resource of interactive experience/advice - hopefully urban myth dispeller - from people who have 'been there, done that, got the t-shirt' lolz ^_^

GF Lover Rising Star

This Forum is also what got me through the gluten-free Transition and listened to me vent when I needed to.  IrishHeart personally got me through dehydration issues and helped me cope with wicked migraines and let me cry on her shoulder.  I have made many friends here and hope to pay forward what I have learned.

 

Colleen

mbrookes Community Regular

I can double up on the previous comments. There is no support group in my area, so I have turned here repeatedly, always with good results.

When I was diagnosed 6 years ago the hospital dietician said " I don't know much about this. Get on the internet". So I did. Six years later I am almost an expert in all things gluten free. Thanks, all you folks who have helped me out. I will continue to help anyone I can.

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    • knitty kitty
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
    • trents
      Another great fiber option is dried apricots. Four of them give you 3g of fiber and I find they don't produce all the gas that some other high fiber options do. They taste good too. Costco sells a large bag of them that are labeled gluten-free so you don't have to worry about cross contamination issues like you might in bulk grocery settings.
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