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

New Here, Pre-diagnosis.


LIS-Guy

Recommended Posts

LIS-Guy Rookie

Hi,

I'm a 45 year-old male who has been struggling for about five years now with debilitating fatigue.

I have had chronic diarrhea since childhood, often uncontrollable, that led to many episodes of 'not making it to the bathroom in time', even into my early teens. I suffered with terrible hay fever as a child that could not be controlled with any amount of medication. When I was 12 I got mononucleosis and had to be hospitalized due to its severity. I don't know what, if anything, these may have to do with Celiac, but I mention these because frankly my immune system has never been quite right since.

Through my twenties and thirties the chronic diarrhea remained but I did learn to live with it. I have recurrent ear and sinus infections and take antibiotics an average of four times per year. I've now become allergic to keflex and sulfa drugs. About five years ago I moved into a new apartment in an old house and developed a sinus infection within a month. I still have it to this day. Even sinus surgery did not relieve it and I've been told it's just 'one of those things'. This is when the fatigue started and has worsened ever since.

Last year my landlord was required to have a health inspection done of the premises. The health inspector was concerned enough by the findings to call me at home and tell me to 'move out of the house as soon as possible'. Apparently the mold was so bad the apartment was unfit to live in. The house had a wet dirt floor in the basement, forced-air heating, and open return-air vents thru which you could see the basement floor. I had been breathing all that in for four years. I moved immediately into modern housing which is very clean and well-maintained, but the fatigue never went away.

I don't have the best insurance right now and frankly my doctor thinks I'm a nutjob. I've been told it's just depression, and I also have low levels of several vitamins, and was prescribed antidepressants and vitamin supplements. Interestingly, several months ago I went on a low-carb diet to lose weight and was suprised to find my symptoms got a little better. I didn't put two and two together at the time, but when you do low-carb you virtually eliminate grains.

Questions: Could I have Celiac's? Could my exposure to the mold have triggered it to get worse?

Thanks for any help,

LIS


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

I would check out this website. www.biotoxin.info Just because you remove the mold exposure does not mean your body was able to detox the toxins. Gluten produces a similar biotoxin to mold, so you could have a problem with gluten (including celiac) in addition to having a problem with the mold toxins.

There are some great webcasts on that website. The doctor there is considered an expert in biotoxin treatment and even mentions gluten/celiac in the webcasts.

MELINE Enthusiast

Hello

check candida...

antibiotics trigger it, mold makes it worse, and fatigue is a main symptom......

Meline

nora-n Rookie

Yes you could have had celiac all the time.

Were any tests run?

Be aware now that celiac tests are very unreliable after being low-carb.

happened to me.

In order to test positive on conventional celiac tests and endoscopy, one has to consume at least 0,3 g gluten per kg weight for at least 6 weeks, better for at least 3 months before testing.

If you want a more sensitive test, you can do the enterolab tests, the stool test and the gene test. But they cannot diagnose celiac, because their tests are too sensitive and detect the antibodies long before they get so bad they enter the blood stream.

nora

LIS-Guy Rookie

Thank you for the valuable information.

I guess it's been about 3 months since I was on the low-carb diet. I only stuck with it for a few weeks however and my chronic diarrhea returned almost immediately upon discontinuing it. I then went to the other extreme and attempted a vegetarian diet thinking it might help my vitamin deficiency and other symptoms. I knew nothing about Celiac at the time... I just thought a vegetarian diet seemed healthier overall. Needless to say I ate a LOT of grains for the thirty days I was vegetarian, and felt absolutely miserable.

I'm going to try and get an appointment to see a gastroenterologist asap. I talked to my primary care doctor's nurse yesterday and found out that my insurance does not require a referral from him if I choose to see a specialist that is in-network. I'll kinda feel like I'm going behind his back, and he won't be happy about it, but at this point I just want answers.

LIS

ravenwoodglass Mentor
Thank you for the valuable information.

I guess it's been about 3 months since I was on the low-carb diet. I only stuck with it for a few weeks however and my chronic diarrhea returned almost immediately upon discontinuing it. I then went to the other extreme and attempted a vegetarian diet thinking it might help my vitamin deficiency and other symptoms. I knew nothing about Celiac at the time... I just thought a vegetarian diet seemed healthier overall. Needless to say I ate a LOT of grains for the thirty days I was vegetarian, and felt absolutely miserable.

I'm going to try and get an appointment to see a gastroenterologist asap. I talked to my primary care doctor's nurse yesterday and found out that my insurance does not require a referral from him if I choose to see a specialist that is in-network. I'll kinda feel like I'm going behind his back, and he won't be happy about it, but at this point I just want answers.

LIS

You could start by calling your GP's office and asking him to order a celiac panel for you. If your doctor knows of your long term history of D he should not have a problem with ordering it. There is a chance your blood panel may show up positive and if it does your doctor could significantly cut your waiting time for an endo by contacting the gastro. No definates there but worth a shot.

LIS-Guy Rookie

Good news.

I have an appointment to see a gastroenterologist on the 30th of this month, it's covered by my insurance, and I'm told she is well-versed in Celiac's. Twenty-seven days doesn't seem like that long to wait for a specialist, does it? To be honest I didn't expect to get in so soon. The hardest part will be continuing to eat gluten till the end of the month while I'm feeling like such crap, but I'll just have to buck up and keep pounding down the bread and pasta while I wait.

Thanks for the help,

LIS


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,058
    • Most Online (within 30 mins)
      7,748

    Sammi19760
    Newest Member
    Sammi19760
    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

    • trents
      Maybe celiac but maybe NCGS that was misdiagnosed as IBS morphing gradually into celiac. Is NCGS a new category to you? It shares many of the same GI symptoms with celiac disease but does not damage the small bowel lining like celiac.
    • knitty kitty
      Thiamine has antifungal properties.  The body uses thiamine to keep bacteria and yeasts from overgrowth in the digestive system.   Fluconazole use can cause thiamine deficiency.   Supplementing with thiamine in the form Benfotiamine would be beneficial as Benfotiamine promotes intestinal healing.   Thiamine and the other B vitamins tend to be low in Celiac due to malabsorption.  Talk to your doctor about supplementing vitamins and minerals.
    • Scott Adams
      Welcome @Natalia Revelo, your experience is profoundly difficult and, sadly, not entirely unique within the celiac community. It's the frustrating reality of "silent" or ongoing damage that isn't captured by the MARSH score alone, which only measures active villous atrophy. Your normal biopsy suggests your diet is preventing the classic autoimmune attack, but it doesn't mean your gut has fully healed or that other issues aren't at play. The inflammation from your newly discovered milk and egg allergies is a huge clue; this constant allergic response can create a low-grade inflammatory environment that severely hampers nutrient absorption, effectively creating a "leaky gut" scenario independent of celiac damage. This is likely why your iron stores deplete so rapidly—your body is both unable to absorb it efficiently and may be losing it through inflammation. While the functional medicine path is expensive, it's clearly providing answers and relief that traditional gastroenterology, focused solely on the gluten-free diet and biopsy results, is missing. To move forward, continue the gut-healing protocols your functional doctor recommends (perhaps exploring alternative options to glutamine that won't irritate your cystitis), maintain your strict avoidance of all allergens and irritants, and know that true healing is a multi-faceted process. You might seek a second opinion from a different gastroenterologist who is more knowledgeable about non-responsive celiac disease and the complex interplay of food allergies and micronutrient absorption, but your current path, while costly, seems to be leading you toward the steady health you need.
    • knitty kitty
      Have you had a DNA test to look for Celiac disease genes?  If she doesn't have any celiac specific genes, look for another explanation.  If she does have Celiac genes, assume they are turned on and active Celiac disease is progressing.  All first degree relatives (mother, father, siblings, children) should be genetically tested as well.   Sometimes blood tests are ambiguous or false negatives if one has anemia, diabetes or thiamine deficiency.  Certain medications like antihistamines and steroids can suppress the immune system and result in false negatives or ambiguous results on antibody tests.  
    • Heatherisle
      That was just the visual report, so need to wait for confirmation or otherwise from the results. They did take a biopsy from the upper end of the duodenum(D1). D2 looked unremarkable on the camera. Just wish we didn’t have to wait so long for the results as she’s naturally a very anxious person. But thanks so much for taking the time to answer me
×
×
  • Create New...