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

Celiac Disease and Fusarium Infection?


Raelynne

Recommended Posts

Raelynne Rookie

I’m not sure if  I’m posting this in the right place on here (my apologies)

i was diagnosed with Celiac Disease May 2017. I also had symptoms of what I thought was just an eye problem. Fast forward to now, turns out I’ve had a systemic, very serious infection from prolonged exposure to fusarium mold. 

 

I am only 30 years old. I just got married, and right after the honeymoon is when the illness had established itself in my skin, bones, joints, internal organs etc. 

 

I'm still hopeful but I’m becoming more ill. 

 

I was wondering if other celiacs have had other issues like this? Systemic infections from mold or long term ingested toxins etc? 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Wow!  Can you share how you were exposed to mold?  Did you get an eye infection from wearing contacts and from there it went systemic?  The FDA recalled some contact lens solution a few years back due to this type of mold.  

I do not think it is related to celiac disease, but mostly those severely compromised immune systems.  Do you have an immune deficiency?  

It can take time to heal from celiac disease.  Have you had your celiac antibodies retested?  Many of your symptoms could be celiac disease related still.  Joint issues can take a while to resolve.  I would insure your celiac disease is not flaring.  That could make a mold issue worse in my non-medical opinion.  

Posterboy Mentor

Raelyne,

Cyclinglady beat me to it.

here is the information on the recall a few years ago of the contact lenses.

Open Original Shared Link

You have a serious infection and need to see a doctor ASAP if you have not already.

this infections can be very serious epecially in immune compromised individuals.

did you have cancer or some other serious infection like lyme that caused neurtopenia?

quoting definition of neutropenia

"Neutropenia (noo-troe-PEE-nee-uh) is an abnormally low level of neutrophils. Neutrophils are a common type of white blood cell important to fighting off infections — particularly those caused by bacteria.J"

Or maybe  have Hepatitis and was undiagnosed?

Open Original Shared Link

This is a serious medical condition if left unchecked that could be life threatening.

**** * I am not trying to scare you but you need to see a doctor about this condition.

posterboy,

 

kareng Grand Master

Are you seeing a a medical doctor for this?  If you are this badly " infected" with "mold" I can't believe you aren't in the hospital . It's really hard to get a fungus out of internal organs and usually, from my experience, you are in the hospital and very sick.  

Raelynne Rookie

It didn’t start in my eyes but that’s surprisingly the first symptoms I had noticed. I have never worn contacts. I have seen doctor after doctor for over a year now and just got diagnosed with a wound culture of a skin lesion on my abdomen. My doctor looked back on my first endoscopy scan taken in May of 2017 (right before my celiac was diagnosed) and the lesions were already all over my GI tract. The mold was growing in a garden, and in my basement, in my water heater, in my house etc. 

 

it was in my foood. God only knows how long id been exposed so it is likely that is was in my eyes because it was in my intestines first :( 

 

 

Raelynne Rookie

To answer other replies I was in the hospital and just came home 

kareng Grand Master
2 minutes ago, Raelynne said:

It didn’t start in my eyes but that’s surprisingly the first symptoms I had noticed. I have never worn contacts. I have seen doctor after doctor for over a year now and just got diagnosed with a wound culture of a skin lesion on my abdomen. My doctor looked back on my first endoscopy scan taken in May of 2017 (right before my celiac was diagnosed) and the lesions were already all over my GI tract. The mold was growing in a garden, and in my basement, in my water heater, in my house etc. 

 

it was in my foood. God only knows how long id been exposed so it is likely that is was in my eyes because it was in my intestines first :( 

 

 

Interesting.,,. Maybe the damage they attributed to Celiac is not from Celiac but this mold?  Something to look into once you get this problem fixed.


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



Celiac.com Sponsor (A8-M):



kareng Grand Master
Just now, Raelynne said:

To answer other replies I was in the hospital and just came home 

I asked because there are a lot of people, pretending to be doctors, that tell people they have all sorts of things like fungus , parasites, and yeast , so they can get a lot of money from them.

Raelynne Rookie

True. I wish that were true in this case because I would rather this not be a fungus but sadly it is.

squirmingitch Veteran

OMG Raelynne! You poor thing! You certainly have my sympathy and I hope you get completely well very quickly.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      22

      Pain in the right side of abdomen

    2. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      22

      Pain in the right side of abdomen

    3. - Scott Adams replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      how long does it take for the genetic blood test for celiac to come back?

    4. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      22

      Pain in the right side of abdomen

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

    • Total Members
      133,667
    • Most Online (within 30 mins)
      7,748

    S.Aulman
    Newest Member
    S.Aulman
    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

    • Heatherisle
      Hasn’t been given folic acid as GP says vit b and folic acid can’t be given together which I find strange cos any time I did venepunctures B12 and folate were always grouped together? Her folate level was 2.2, just below the normal level
    • Heatherisle
      Hi Thanks for your input. Don’t know which exact medication she’s on, keep asking but she keeps forgetting!!! I still think her Vitamin D levels might be low cos she had the back pain and tingling last year( around March /April) and levels were low so she had 3 month course then and it helped. She’s coming home next week (as in to ours) for a long weekend so hopefully some TLC from mum and dad will help!!!    
    • Scott Adams
      Genetic testing for celiac disease (the HLA-DQ2 and HLA-DQ8 genes) usually takes about 3–10 days to come back, depending on the lab your doctor uses, though some places may take up to two weeks. The test itself doesn’t diagnose celiac disease—it only shows whether you carry the genes that make celiac possible. About 30–40% of people have one of these genes, but only a small percentage actually develop celiac disease. However, if the test is negative for both genes, celiac disease becomes extremely unlikely, which is why your doctor mentioned possibly canceling the endoscopy if the result is negative. If it’s positive, it just means celiac remains a possibility and further testing, like a gluten challenge followed by endoscopy, helps confirm it. Since you have an identical twin, it’s definitely useful information to share if the genes are present, because twins share the same genetic risk. It sounds like you found a very thorough GI doctor, which is great, especially since she’s also monitoring nutrients and looking at the whole picture.
    • knitty kitty
      @Heatherisle, You're not a bother at all.   What "Vitamin B medication" is she taking?  Is it just B12 and folate?   All eight B vitamins, Vitamin D and other vitamins and minerals need to be supplemented because the malabsorption of Celiac disease affects all the nutrients.  All the B vitamins work together.  Just supplementing one or two can throw the other B vitamins out of balance causing worsening deficiencies in other B vitamins.  Doctors are undereducated about nutrition.  Heavy sigh. This is worrisome.  These are all symptoms of Gastrointestinal Beriberi caused by Thiamine deficiency.   An Erythrocyte Transketolace Activity Assay needs too be done to check her Thiamine level.  But because this test is so expensive and takes so long for the results to come back, it's much simpler to administer 500 mg Thiamine Hydrochloride several times a day for several days and look for health improvement (WHO recommendation).  Doctors can administer Thiamine Hydrochloride by IV along with a "banana bag" with all the B vitamins in it.  (Riboflavin gives it the yellow color.).  I've experienced vitamin deficiencies which my doctors didn't recognize.  When thiamine and B12 deficiencies started affecting my brain function, my doctors wrote me off as a depressed hypochondriac.  I had Gastrointestinal Beriberi myself.  I took over the counter thiamine hydrochloride at home and had health improvement within an hour.  High doses (500 mg) of Thiamine are needed to "jump start" the body into proper functioning.   Apologies if I was curt.  I get very frustrated because the nutritional deficiencies that occur with Celiac disease are not addressed properly.  All I can do is tell people about what I learned on my Celiac journey.  Have you visited my blog?  Tap on my name, look for pull down menu Activities and go to blog.   I do hope your daughter can get the nutritional support she needs.  I'm very worried.  Please keep us updated!
    • Heatherisle
      Hi  Thank you, will tell her to do that
×
×
  • 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.