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New And Lost

Leela

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Leela Newbie
Leela
Posted

heya there. just registered. dunno if i do everything right.

ok, i start.

my best friend has been diagnosed with Celiac about two years ago but it seems it's a lot more than just that. it's all related but he's got so many diagnoses that he doesn't even know half of them.

he keeps going into anaphylactic shock. his bones are a bit fragilised, he's started to walk with difficulty.

now doctors say his chances to survive are extremly thin... :(

I keep checking out sites and books to get info, but i'm getting a bit lost... does anyone know why he's so screwed up and getting worse every single day?

Leela

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plantime Contributor
plantime
Posted

If he is celiac and still consuming gluten even in trace amounts, he will continue to get sick. It could be that the damage before diagnosis was so severe that it was already too late to save him. It could also be that something entirely different is causing the decline. I am very sorry about your friend. I hope you get answers and peace with what is happening to him.

Leela Newbie
Leela
Posted
  • Author

thanks for having tried to answer, it means a lot.

answers, maybe. peace, never.

Leela

plantime Contributor
plantime
Posted

Please just keep us posted.

Leela Newbie
Leela
Posted
  • Author

I will... tho i have no clue where this is going. i dont wanna see where it's going actually.

i dunno if his diet is totally gluten free... i guess it is.

docs keep running tests tho... they have this nasty habit to take so much blood out of him that he passes out. does anyone know what they're testing?

  • 3 weeks later...
Leela Newbie
Leela
Posted
  • Author

me again...

he says he's getting a bit better. he can walk again! :)

i talked a lot with him and now he says he wont give up anymore.

d'you think prayers can do miracles?

lovegrov Collaborator
lovegrov
Posted

If he's actually going into anaphylactic shock that sounds like an allergy of some sort, not just celiac.

richard

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plantime Contributor
plantime
Posted

I have celiac and allergies, so he probably has both. It makes finding the culprits and eliminating them harder. I am glad he is starting to get better. Yes, I believe in prayer!!

Leela Newbie
Leela
Posted
  • Author

true... i think he's got an awful lot of allergies...

prayers are all that is left...

wildones Apprentice
wildones
Posted

I absolutely believe in prayers, and specific ones help. What is your friend's name and where does he live ? I would be glad to pray for answers and health for him. I know prayers made a tremendous difference for one of my boys that had very little hope for survival.

Lorraine

Leela Newbie
Leela
Posted
  • Author

I've PMed you... thanks

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    • knitty kitty
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      @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
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      By trents · Posted

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