Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Prayers Needed


confused

Recommended Posts

confused Community Regular

he did have an feeding tube a few days ago, i dont think he still has one. What the dr wants it the most possible calories possible and that he needs to do it on his own. With an feeding tube its more like life supports and i guess he dont want that. But like i told hubby he needs to at least stay hudrateed and get something.

I asked the drs across the street about it and they never heard about it, but they printed out some stuff from their medical program and that was very informative but so scary to.

We couldnt get an hold of the caseoworker when hubby came home for break so we will try again when he gets home. My poor hubby looks terrible and an jerk at work did help at all. he was mad at hubby for something and huby was like i have been gone for 2 weeks and its not fair im getting in trouble and they guy kept it up and dan yelled at him ans said u know what its not fair my brother is in a hospital dying either. So the guy shut up.

My poor 6 yr old would not go to school today cause he is so afraid that my hubby is going to die with his uncle. And my 7 yr is afraid my hubby will leave and not come back. It weird how kids think the way they do.

I am just at lost what i can do to make things better for everyone.

But coming here to write makes things easier on me, mentally.

paula


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



Celiac.com Sponsor (A8-M):



Judyin Philly Enthusiast

Dear Paula

I'm glad it helps to come here.

I've found that so true also.

We're here ..........pulling for you and your dear family

hugs

judy

mama2 Apprentice

My thoughts and prayers are with you and your loved ones.

NoGluGirl Contributor

Dear Paula,

Your poor husband! :( I am so sorry to hear he had to deal with that creep at work. Some people are just hateful. They could not care less what others deal with. They believe the entire universe revolves around them.

I really cannot wait to read about Valley Fever. I have never known it existed. If I can find anything that is useful, I will be sure to post it. Meanwhile, I hope they can get your BIL to eat. As you said, just keeping him hydrated is a great help.

Feel free to pour your heart out. We all go through things like this. If it were not for the support of everyone on this forum, many of us likely would have given up ourselves due to Celiac alone, nevermind the rest of the issues we must deal with on a daily basis. It is almost like an online journal. I love to write poems and songs to deal with my feelings.

Children get terrified in these situations. They do not always understand how these things go. Perhaps if you talk to them about their uncle being sick, they will understand better. Tell them something like "I know you are scared your father/stepfather is going to die because your uncle is sick. Your uncle has something called Valley Fever." Explain to them that Dan is healthy, and does not have Valley Fever, and is okay. Give them a hug, and tell them you love them.

Sincerely,

Jin

lovegrov Collaborator

So the fungus-killing medications aren't helping? If not, I'm so sorry.

richard

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,345
    • Most Online (within 30 mins)
      7,748

    Michelle.a97
    Newest Member
    Michelle.a97
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.1k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Morgan Tiernan! I find it outrageous that your physicians refused to test you for celiac disease despite what were obviously outbreaks of dermatitis herpetiformis. Every physician should know that dermatitis herpetiformis is a classic symptom of celiac disease! In fact, celiac disease is the only known cause for dermatitis herpetiformis and because dermatitis herpetiformis has such a distinctive appearance with the pustules in the bumps they should recognize what it was. There is just no excuse for this! You do not mention having any GI distress so I'm sure they were discounting the possibility of celiac disease because of that. Anyway, one thing that might be helpful to you is to look into a low iodine diet. Iodine exacerbates dermatitis herpetiformis. There is also a med called Dapsone which is effective for dermatitis herpetiformis but it needs to be used with caution as it puts stress on the liver. So, if you were taking Dapsone you would need to have your liver enzymes checked regularly. Not every dermatologist is familiar with the correct way to biopsy dermatitis herpetiformis so I hope it was done correctly in your case. My understanding is that the samples need to be taken next to the bumps and not on the bumps. At any rate, if your biopsy is positive for dermatitis herpetiformis you have your official celiac diagnosis. By the way you spell "coeliac" I'm assuming you live in the U.K. If so, there may be some extra benefits available to you if you have an official diagnosis. Keep us posted.
    • Richardo
      I've never had problems with quinoa but I always rinse it well before cooking in case it's processed with other grains. I think quinoa is classified as a seed. I can't eat grains at all but I can eat all seeds. Ain't the human body a pandora's box of surprises??? 
    • Morgan Tiernan
      Hi there! I’m new here and very grateful to any information that can be provided on the topic of Dermatitis Herpetiformis. I’m 22 years of age and have been struggling with this rash since the age of 19. We’re pretty sure it was brought on after having Covid (which resulted in shingles on my backside and strep a year or so later ) I struggle with intense itching and burning which often cannot be reached by a scratch. A find myself applying pressure on the skin in the early stages of it developing. Once it surfaces, small fluid filled blisters can be seen, most often on my chest, back, forearms and forehead (but has sometimes been in more places). We have only recently discovered its link to eating gluten, however getting doctors to listen to me has been a real struggle. They refused to test me for coeliac and offered me no follow up information or care plan, leaving me with no choice but to follow a gluten free diet off my own whim. The rash instantly improved in a couple of days, but of course I now struggle to be tested appropriately without having to go back to eating the dreaded stuff. Anytime I reintroduce it I become so unwell with dermatitis herpetiformis and tiredness. I am also struggling with outbreaks in between taking oral steroids to treat a flare up after being glutened (steroids provided by my private dermatologist thank goodness for him!) We’re now in the process of waiting for a skin biopsy, but I’m finding the outbreaks in between difficult to manage. I enjoy going to the gym but also dance competitively. Sweat seems just to irritate like nothing else. dermatitis herpetiformis has got in the way of so many aspects of my life already and I’m struggling now to navigate it affecting me doing the things I enjoy.  I’m after some advice from anyone who can relate or has experience of similar issues. I struggle to get this information from health care professionals so would love any advice or support from anyone if possible.  Thank you so much for your time  
    • Matt13
      Hi knitty kitty, Scott and all, Thanks for kind words and asking!I will def. talk about histamine intolerance  on my next visit to gastro doc. My doc.gastro says that lactose or casein is very unlikely to create marsh 3b histology like gluten in adults in intestines. (that was previous question for Scott) Regarding my last EGD the villy was OK so refractory is out of the question based on my talk with dr. If Scott is right and there are so many intolerance in food for celiac what is left to eat?? And now histamine? I mean what should i eat? Maybe gastritis is doing all this trouble? Thanks Kind regard    
    • Rogol72
      @Richardo, I'm in the same boat as you! I can't handle certified gluten free oats at all. Quinoa is the worst, even when I soak it in water and then wash under the tap for 10 minutes ... I have a reaction. It must be an immune system reaction to the proteins in these gluten-free grains. 
×
×
  • Create New...