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

Anyone In Southern Usa


confused

Recommended Posts

confused Community Regular

I need any regular information on valley fever. I have looked it up, but wanted to know if anyone has known someone with this disease. I had never heard of it til last night.

I guess that is what started my bil problem, and then it turned into fungal menigitsis, he finally got an new dr that is letting the family know the truth besides his old dr.

And people wonder why i hate drs.

paula


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



Celiac.com Sponsor (A8-M):



ptkds Community Regular

I found this article. I didn't read it, but it looked like it was full of info. I just did a search on the name, and it brought up a bunch of stuff. I hope your BIL gets better soon.

Open Original Shared Link

ptkds

UR Groovy Explorer

Hi,

My sister contracted valley fever when we lived in Bakersfield. It comes from certain spores that are airborn in desert areas (from what I know). She underwent treatement for a while and had a couple of joint surgeries (her case was pretty severe though).

Just to calm you about this, after her treatments and surgeries, she recovered well. She's strong, healthy, and now has 3 awesome kids. She's never had any problems from it since then.

Take care

mouse Enthusiast

It is airborne and that is why all the construction jobs are required to water the soil when they dig. The spoors can also become airborne after a rain. Antibiotics are necessary and PLENTY of rest. Your BIL should not over extend himself during the recovery. It can cause lots of damage if allowed to run unchecked and without the proper treatment. Animals also get Valley Fever.

confused Community Regular
Hi,

My sister contracted valley fever when we lived in Bakersfield. It comes from certain spores that are airborn in desert areas (from what I know). She underwent treatement for a while and had a couple of joint surgeries (her case was pretty severe though).

Just to calm you about this, after her treatments and surgeries, she recovered well. She's strong, healthy, and now has 3 awesome kids. She's never had any problems from it since then.

Take care

was hers the dissemented type were it affects all of the body. And did she get the pnemonia with it?

Did she sleep like all the time and never want to eat?

I am so hoping he does recover, but it seems like too many of his organs are really bad. I know the drs said if he can eat he will get better, but he wont eat and that is what scares me.

Was your sister in the hospital with it, or did she jsut recover at home.

paula

confused Community Regular
It is airborne and that is why all the construction jobs are required to water the soil when they dig. The spoors can also become airborne after a rain. Antibiotics are necessary and PLENTY of rest. Your BIL should not over extend himself during the recovery. It can cause lots of damage if allowed to run unchecked and without the proper treatment. Animals also get Valley Fever.

We are thinking he has had it for a very long time cause he has been in colorado since june. And we are kinda thinking he didnt get it in new mexico but in arizonia were he hasnt lived for almost 2 years.

He tried to get out of bed yesterday and just collapsed, but he really hasnt ate in a month, so not sure if he is weak from that or from the disease.

paula

confused Community Regular
I found this article. I didn't read it, but it looked like it was full of info. I just did a search on the name, and it brought up a bunch of stuff. I hope your BIL gets better soon.

Open Original Shared Link

ptkds

thanks pt, i think i read that one this morning

I guess i was just hoping i could find something that would tell me like accurate survival time.

paula


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



Celiac.com Sponsor (A8-M):



UR Groovy Explorer

Hi Paula,

It was so long ago, but I know this much:

The first part of her treatment was with Amphotericin. It was a pretty rough road. She lost a lot of weight. She's 6 feet tall and her weight plummeted to about 115 by the time treatment was done (her normal weight is about 155).

After her treatments, I believe she was usually held overnight for observation (if I remeber 23 years back correctly).

It manifested in her joints, which is why she had the surgeries. I believe it always begins with the lungs and then travels to different areas of the body depending. She may very well have had pneumonia - I just don't remember (and this isn't something I'd bring up with her - reminders of a difficult time and all).

She was extremely weak and run down during this time. We were very concerned about whether she would make it through or not (mainly because she just got so darned skinny). She did. But, it was a long road. She wasn't really fully recovered for at least a year or so.

I hope that with proper care, plenty of TLC, a good attitude, and a good specialist, he'll be okay. Like I said, she's soooo fine now - strong as a horse with no organ problems - in fact, I think it's ironic that she had Amphotericin treatments and I have kidney disease. Be good to him and know that he'll need help while he's recovering - and lots of positive energy around him. I hope your bil will be just as well as she is. I'm sorry your family will be dealing with this.

Take care of you and him

k

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,550
    • Most Online (within 30 mins)
      7,748

    TNV
    Newest Member
    TNV
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • MoniqueCham
      Thanks for your reply Scott! A long time ago I realized I didn’t fit neatly into uncomplicated celiac disease. Over the years I’ve been diagnosed and treated for SIBO, pancreatic insufficiency and diagnosed with Stage 2 liver fibrosis. I think all the complications occurred because of the refractory celiac disease. When I hit menopause my gut issues seemed to calm down and because I was stable I made the mistake of not following up with my gastroenterologist. Then other autoimmune problems flared and I tried the methotrexate. It worked like a charm for my skin condition… then my sigmoid colon ruptured. Strange but my autoimmune skin condition remains in remission after 6 months off the medication. We have a very long waiting list to get back into see my GI doctor… I was an emergency referral but am still waiting 6 months after the perforation. I need more surgery to fix a fistula that has formed and to reconnect my colon… I have a colostomy at present. I became a dietitian who specializes in bowel diseases but have never met anyone who’s had so many complications with celiac disease. I have a brother and son who also have been diagnosed. My mother had 4 autoimmune diseases including a vasculitis that eventually resulted in her death and it was my father who had the HLA DQ2 gene. Think I inherited some tendencies from each of them. Thanks again for your response… it feels a little lonely dealing with GI issues when I work so hard to remain gluten free.   
    • HelenH
    • Scott Adams
      Yes, unfortunately malt vinegar can definitely trigger a strong reaction in people with celiac disease. Malt vinegar is typically made from barley, which contains gluten, and unlike distilled white vinegar, it is not considered gluten-free. Even a small amount — especially if you’ve been strictly gluten-free for years — can cause a more intense reaction because your body is no longer accustomed to exposure. Many people report significant symptoms after accidental ingestion, including abdominal pain, diarrhea, fatigue, or flu-like feelings. You’re not alone in that experience. It may help to be especially cautious with salad dressings, chips, sauces, and restaurant foods, where malt vinegar is sometimes used.
    • Scott Adams
      A diagnosis of Refractory Celiac Disease Type 2 is a lot to absorb, especially if you feel like the severity wasn’t clearly communicated earlier. It’s understandable to feel shocked and frustrated. RCD Type 2 does require close specialist care, often with a gastroenterologist who has experience managing complex celiac cases, and sometimes coordination with hematology because of the immune cell changes involved. Focusing on nutrition is absolutely important — many people benefit from working with a registered dietitian who specializes in celiac disease to help address malabsorption, weight loss, and vitamin or mineral deficiencies. You’re doing the right thing by seeking information and support. Make sure you feel comfortable asking your care team direct questions about your biopsy results, treatment plan, and monitoring strategy — you deserve clarity and a coordinated approach.
    • Scott Adams
      I’m so sorry you’ve been through all of that — that’s an incredibly complex history. While methotrexate is widely used at low weekly doses for autoimmune conditions, it can, in rare cases, cause serious gastrointestinal side effects, including ulceration, mucosal injury, or even perforation. That said, a spontaneous sigmoid rupture from methotrexate at 15 mg weekly is extremely uncommon. In people with celiac disease — especially refractory celiac — there can already be underlying intestinal inflammation or altered mucosal integrity, which might theoretically increase vulnerability, but there isn’t strong published evidence clearly linking stable celiac disease to a markedly higher risk of methotrexate-related bowel perforation. Other factors such as concurrent inflammation, vascular compromise, infection, steroid use, or microscopic colitis may also contribute. It would be reasonable to review the case with a gastroenterologist familiar with refractory celiac and possibly a rheumatologist, and to report the event as a potential adverse drug reaction. I’d also be very interested to hear if others in the community have had similar experiences.
×
×
  • 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.