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Never Let Anyone Tell You This Isn't Serious

bonnie blue

By bonnie blue
in Coping with Celiac Disease

Recommended Posts

T.H. Community Regular
T.H.
Posted

Oh so glad to hear you caught it early.

Kick that cancer's butt, hon. Stomp it flat.

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lucky28 Explorer
lucky28
Posted

Glad to hear it's only in early stages! Glad to hear your dr wants u to get a port (it makes the chemo easier~saves your veins!) Kick that adenoma to the curb! Keep us updated~

yorkieluv Newbie
yorkieluv
Posted

I am so sorry about your diagnosis but so glad it's in the early stages. Hang in there with your treatment and keep us updated.

Di2011 Enthusiast
Di2011
Posted

My Nan's name was Bonnie :) I wish you well and lots of "good" Bonnie.

"The name Bonnie has two meanings:

1. It is derived from the Scottish word "bonnie" meaning "pretty, attractive". The Scottish word is derived from French "bon, bonne" meaning "good".

India Contributor
India
Posted

I've been thinking about you a lot since I read your post and I'm so glad that you've had such positive news. Good luck to you xx

Reba32 Rookie
Reba32
Posted

wow Bonnie, it sounds like a rough road ahead! I had no idea they could build a stomach out of intestines :unsure:

Best healing thoughts and prayers to you, and wishes for a speedy recovery. {{{hugs}}}

and if I were you, I'd think about suing the doctors that told you it's all in your head. Had they taken you seriously, it's possible there would have been less damage and you may not have had to have your entire stomach removed. :blink: At the very least, send them a copy of your dx, and tell them to be more diligent in future so the same doesn't happen to someone else :(

cougie23 Explorer
cougie23
Posted

Wonderful news that it's in the early stages and there is treatment for you. You advocated for yourself and got answers quickly.

You can beat this. Cancer is treatable these days.

Do everything you can to support yourself nutritionally too. I started juicing lots of green veggies and then adding apples, carrots and oranges to flavor it up. It is helping me a lot.

Hang in there and keep posting when you need us.

Just a reminder- Juice your greens yourself...the greendrinks in the stores(even the healthy ones) have gluten in them...their one of the few health drinks that do!

Hang in there! :D(naked juice, green machine,,ect.,ect.)

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  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Is this celiac?

      @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...
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      Thanks, that's a great addition that I hadn't thought of.
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      - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      ttg iga high (646 mg/dl) other results are normal

      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.
    5. trents
      - trents replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
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      Fiber Supplement

      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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  • Posts

    • knitty kitty
      Is this celiac?

      By knitty kitty · Posted

      @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
      Fiber Supplement

      By Trish G · Posted

      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Is this celiac?

      By trents · Posted

      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
      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      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
      Fiber Supplement

      By trents · Posted

      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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