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

Found My Brother In A Heap! Starving, Dying, Weak.....

winki4

Recommended Posts

winki4 Apprentice
winki4
Posted

As a 11 year gluten free Celiac that endured my entire family pooh poohing the idea of a gluten free diet or Celiac in general, I was shocked to get a call a few days ago from my 54 year old brother. He wanted to go to the hospital. Says he is dying and needs me to take him right away. I go over to his home a few minutes away and find him looking like a death camp survivor. Emaciated, wracked with belly and intestinal pain and pale in color. I knew his backround was like mine, with stomach troubles all his life, so I knew I was looking at a full blown Celiac in serious trouble. I was in the same place 11 years ago, only days away from dying, diagnosed by my mom bringing in a magazine article from Diabetic Forecast magazine.

I knew how to help him, cleaned his kitchen of gluten, filled his cupboards with safe food, convinced him to just try the diet and voila! 4 days now and he thinks I am a genius. We have traded stories now about our past "problems" with eating certain foods. His son came for a visit today and was reading some info I printed off this forum for my brother to read. The son showed me his purple scars on certain key spots of his body and now I see the son has Demetitus Herpetiformus. You could have knocked me over with just a breath! Another Celiac in the family. So now both of them are doing the gluten free diet. I am elated and sad at the same time. My brother is getting well day by day, as all of us know the drill. He has a long road in front of him to getting well. As all of us can understand so well, he's been seen by too many doctors, been diagnosed with Bi-polar, depression, and called nuts all too often. I assured him that those bad days are largely over now. Thanks for this forum. Thank goodenss my brother will make it. :D

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

Celiac.com Sponsor (A8-M):


AndreaB Contributor
AndreaB
Posted

I'm so sorry he was so sick....but glad you were able to help him and that he has started on the road to better health. :)

Matilda Enthusiast
Matilda
Posted

...

Guest nini
Guest nini
Posted

he is so lucky to have you!

Sweetfudge Community Regular
Sweetfudge
Posted

Wow! I guess sometimes it takes getting that sick to convince people that something's wrong! Glad he's doing better!

jerseyangel Proficient
jerseyangel
Posted

Wow--I'm so glad you were there for him, and that he's doing better :)

DingoGirl Enthusiast
DingoGirl
Posted

Oh my gosh, you were a godsend to him. That is an amazing story! He is quite fortunate to have someone who knows the ropes and has been there all this time. :)

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

Celiac.com Sponsor (A8-M):


winki4 Apprentice
winki4
Posted
  • Author

Thank you everyone for your unending encouragement and support. When I was first diagnosed a Celiac, there was little gluten free food available off the shelf, no cookbooks, no internet help and I was on my own. Newbies have it really good these days. Again, thank you everyone. This forum helps even an "old timer" like me! :lol:

kbtoyssni Contributor
kbtoyssni
Posted

Your brother is really lucky to have you!

CatandCanary Rookie
CatandCanary
Posted
As a 11 year gluten free Celiac that endured my entire family pooh poohing the idea of a gluten free diet or Celiac in general, I was shocked to get a call a few days ago from my 54 year old brother. He wanted to go to the hospital. Says he is dying and needs me to take him right away. I go over to his home a few minutes away and find him looking like a death camp survivor. Emaciated, wracked with belly and intestinal pain and pale in color. I knew his backround was like mine, with stomach troubles all his life, so I knew I was looking at a full blown Celiac in serious trouble. I was in the same place 11 years ago, only days away from dying, diagnosed by my mom bringing in a magazine article from Diabetic Forecast magazine.

I knew how to help him, cleaned his kitchen of gluten, filled his cupboards with safe food, convinced him to just try the diet and voila! 4 days now and he thinks I am a genius. We have traded stories now about our past "problems" with eating certain foods. His son came for a visit today and was reading some info I printed off this forum for my brother to read. The son showed me his purple scars on certain key spots of his body and now I see the son has Demetitus Herpetiformus. You could have knocked me over with just a breath! Another Celiac in the family. So now both of them are doing the gluten free diet. I am elated and sad at the same time. My brother is getting well day by day, as all of us know the drill. He has a long road in front of him to getting well. As all of us can understand so well, he's been seen by too many doctors, been diagnosed with Bi-polar, depression, and called nuts all too often. I assured him that those bad days are largely over now. Thanks for this forum. Thank goodenss my brother will make it. :D

winki4,

Your story is so moving to me, my brother is also sick and is unwilling to do anything about it. Thank God you were able to reach your family at just the right time. I was sick for so long and now you and the others on this web page have realy changed my life and have given me the hope that some day my family will get better. My mother was very sick for years and passed away at age 44 from what I think was Celiac related illness. I believe she is watching over me now and would have given her own life to save mine. I know you must be a very strong and wonderful person. My thoughts are with you and your family. What a wonderful gift you have received for the holidays.

LOL

Cathy :D

girlfromclare Apprentice
girlfromclare
Posted

Well done you!! Im so glad that you were able to help your brother and now son as well. I know what its like to see people you love with symptoms and getting sicker and them not doing anything about it... its so frustrating. I hope it doesnt take them getting as sick as your poor brother did before they will listen to what i have to say...

well done again and I wish you all the best of luck

Liz (Ireland)

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,964
    • Most Online (within 30 mins)
      7,748
    Cbear
    Newest Member
    Cbear
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • 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.