Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

New And Lost


Leela

Recommended Posts

Leela Newbie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



plantime Contributor

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

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

answers, maybe. peace, never.

Leela

plantime Contributor

Please just keep us posted.

Leela Newbie

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

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

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

richard


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



plantime Contributor

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

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

prayers are all that is left...

wildones Apprentice

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

I've PMed you... thanks

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Celiac friendly probiotics

    2. - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

    3. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    4. - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

    5. - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,882
    • Most Online (within 30 mins)
      7,748

    Nicole King
    Newest Member
    Nicole King
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Florence Lillian
      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.