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Shouldn't Celiac3270 Be Back On Line By Now?

Canadian Karen

By Canadian Karen
in Coping with Celiac Disease

Recommended Posts

strack2004 Rookie
strack2004
Posted

celiac3270, I didn't realize that you had been hospitalized. I am glad to hear that you are home again after your second hospital visit and pray that this surgery will be the answer for you. Cheers, Ruth S. Strack 2004

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debmidge Rising Star
debmidge
Posted

celiac3270, Wishing you a speedy and uneventful (except for happiness and joy) recovery. Rest, then let us know how you are doing.

(By the way, which hospital were you at for this surgery?)

Debbie Midge :)

celiac3270 Collaborator
celiac3270
Posted

Columbia Presbyterian -- the same hospital that Dr. Greene and my GI (celiac-specialist) practice at.

And thank you....the swelling went down a little bit with the pill--and I've just been relaxing, posting, and reading (right now it's Bringing Down the House -- a NY Times bestseller that I'm really enjoying right now).....no further incident w/ anything :)

mela14 Enthusiast
mela14
Posted

Hi celiac3270.....hope you are doing better. Who is the dr that you see at Columbia. I called ther last month to make an appt as I am moving to NJ this week and wanted to see Peter Green. Of course he is very busy and does not take my ins. They suggested that I see an associate. I think her name was Dr Lee.

I didn't make the appt yet but would love to hear about your experience there.

I saw a GI dr in NJ last month and he was OK....not Columbia material though.

Take care of yourself,

celiac3270 Collaborator
celiac3270
Posted

Dr. Green doesn't take children so, since I'm only 14, I see Dr. Joseph Levy. Everyone, it seems, who has ever had him has been extremely pleased--he takes the time to talk to you, confident, reassuring, etc. He's only a pediatric doctor, though....I assume that you meant my normal GI, who specializes in celiac, at Columbia

Guest jhmom
Guest jhmom
Posted

celiac3270 I am glad you are back and on the road to a full recovery!!!!!

Take care of yourself and get plenty of rest! :D

FaithInScienceToo Contributor
FaithInScienceToo
Posted

No more tangled intestines...

Yipee!

Welcome back, celiac3270 -

Gina :)

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ryebaby0 Enthusiast
ryebaby0
Posted

Awwwww... I feel bad, I haven't been around and didn't know! I'm so glad you are home. FYI -- if you (or anyone else) ever needs any kind of ng tube again (let's hope NOT) ask the nurses for chloroseptic when they place it, and for as long as you have it. Doesn't remove the pain entirely, but for some people it can help take the edge off.

Let's pray this is going to make the difference for you, after so much searching for help! You're the man! :)

Joanna

kactuskandee Apprentice
kactuskandee
Posted

Welcome Back celiac3270,

We missed you................we need you around so rest and relax and get well soon. Thanks for sharing your experience with us.....but then you are always sharing your knowledge that is above and beyond our expectations and your chronological age.

You had quite and ordeal but we know you were in good hands and that all this will contribute to you feeling much better in the long run.

You have the best attitude I've ever seen!!!

Kandee

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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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