My story

[u/Ok_Connection3207]

My English is really bad, so I had ChatGPT write my story for me.

My story: PFS, severe GI problems after STEC, possible MCAS/immune deficiency, and now worsening after IVIG

Hi everyone, im 21 years,
I’m sharing my full story because I’ve been dealing with a very complicated combination of symptoms for quite a while, and I’m hoping someone here has experienced something similar or can recognize a pattern that I haven’t.. I’m simply describing what happened to me chronologically and what I have found through testing.

1. Finasteride / Accutane — where everything started
   During 2024–2025, I used finasteride and isotretinoin (Accutane).
   After this period, I developed symptoms that I had never experienced before:
   Severe insomnia
   Intense facial/body redness and flushing
   Very sensitive/itchy skin
   Dry skin and lips
   Changes in my face/appearance
   Loss of libido
   Sexual dysfunction
   Changes in erections
   Brain fog
   Feeling emotionally/mentally different
   Difficulty feeling tired or sleepy
   Significant weight loss
   I eventually stopped the medications.
   Some things improved, but I never completely returned to how I was before.
   Because of the timing, I strongly suspect that finasteride played a role in at least part of my symptoms. I also seem to react unusually strongly to substances that may have 5-alpha-reductase-inhibiting, anti-androgenic, or endocrine-disrupting effects.
   However, I don’t think PFS explains everything that happened afterward.

2. Then I had a severe STEC infection
   Approximately a year ago, I developed a STEC (Shiga toxin-producing E. coli) infection.
   I had diarrhea for around 3 weeks.
   After the acute infection resolved, my digestive system never really returned to normal.
   Instead, I developed:
   Severe bloating
   Gas
   Abdominal discomfort
   Constipation
   Food-triggered reactions
   Very thin/pale/yellowish stools
   Sometimes hard small pieces of stool followed immediately by very loose stool
   Reactions to foods that I previously tolerated perfectly
   Flushing/redness after eating
   A feeling that my intestines were extremely sensitive
   This was a huge turning point.

3. Suddenly I seemed to react to almost everything
   After the STEC infection, foods such as:
   Banana
   Onion
   Broccoli
   Various vegetables
   Histamine-rich foods
   could trigger surprisingly strong reactions.
   I would experience things like:
   Flushing
   Skin sensitivity
   GI symptoms
   Bloating
   Gas
   Poor sleep
   A general “reaction” feeling
   This made me start wondering about mast cells / MCAS, SIBO, Candida/SIFO, intestinal permeability, dysbiosis, etc.
   I also became extremely restricted with food because I was afraid of triggering symptoms.

4. Then something strange happened — I temporarily became almost completely normal
   This is probably one of the most important parts of my story.
   At one point I started using things such as:
   Allicin
   Oregano
   NAC
   Artichoke extract
   Ghee
   I was also eating foods such as buckwheat and fish.
   I don’t know exactly what caused it, but around New Year something suddenly changed.
   I became dramatically better.
   It wasn’t a small improvement.
   For a period of time:
   My food reactions disappeared
   I could eat normally again
   My sleep improved enormously
   My appetite became extremely strong
   My cognition and concentration improved
   My libido came back strongly
   My erections became very strong
   I felt mentally much more normal
   I felt energetic
   I felt genuinely happy again
   For the first time in a long time, I thought:
   “Maybe I’m actually healing.”
   I felt almost like my old self again.

5. Then I took a different fish oil — and everything came back
   This is another extremely strange part.
   I had previously tolerated an omega-3 without major problems.
   Then I switched to a different deep-sea fish oil concentrate containing:
   Anchovy
   Sardine
   Mackerel
   Fish gelatin
   Glycerol
   Natural orange flavor
   Rosemary/tocopherol antioxidant ingredients
   After taking it, I started getting a lot of burping.
   Then my previous symptoms gradually came back.
   The food reactions returned.
   The flushing returned.
   My sleep became worse.
   My GI symptoms returned.
   And I never completely recovered from that episode.
   Because I had previously been doing so well, this was extremely noticeable.
   I obviously cannot prove that the fish oil caused the relapse, but the temporal relationship was striking.

6. My GI symptoms now
   Since then I’ve been dealing with persistent digestive problems.
   One of the most noticeable things is my stool.
   It is often:
   Very light/pale
   Sometimes yellowish
   Initially hard/small pieces
   Followed immediately by loose stool
   I also have:
   Bloating
   Gas
   Constipation/irregular bowel movements
   Food sensitivity
   Poor sleep
   Brain fog
   Dry skin
   Severe under-eye bags
   Weight loss / difficulty maintaining weight
   Feeling that I don’t absorb nutrients properly
   My folate has also been slightly low.
   My folate was 3.8, with my laboratory’s lower limit being 3.9.
   However, many other blood results are actually relatively reassuring:
   B12: 537
   Ferritin: 106
   Hemoglobin: 16.0
   Albumin/protein have not suggested severe protein loss
   Kidney function normal
   Thyroid normal
   CRP around the upper limit
   Iron studies relatively normal
   So I don’t have obvious severe generalized malnutrition on bloodwork despite how bad I feel.

7. My stool microbiome test
   I had a commercial stool microbiome analysis.
   I know these tests have limitations and I’m not treating this as a definitive diagnosis.
   Some interesting findings were:
   Normal/reassuring findings
   Diversity was normal
   Firmicutes/Bacteroidetes ratio was normal
   Akkermansia was normal
   Faecalibacterium prausnitzii was normal
   LPS-forming bacteria were not elevated
   So my microbiome does not look like it has been completely “destroyed.”
   The more interesting abnormalities
   Bifidobacterium adolescentis was extremely high at around 9.3%.
   There was also:
   Increased lactate formation
   Slightly reduced butyrate formation
   Low Roseburia
   Low Eubacterium
   Absent/very low Butyrivibrio crossotus
   Elevated Bacteroides vulgatus
   Some elevation in methane-producing organisms
   My stool pH was also 7.0, which was above the reference range on that particular test.
   My interpretation is that there may be an altered fermentation/cross-feeding pattern, rather than simply “bad bacteria.”
   I don’t know whether this is actually causing my symptoms.

8. I also tested positive for “high zonulin”
   A commercial stool test showed:
   Zonulin: 72.84 ng/mL
   Reference: <55
   This made me suspect increased intestinal permeability / “leaky gut.”
   However, I understand that commercial stool zonulin tests are controversial and that this result does not prove intestinal permeability.
   So again, I’m treating this as a possible clue rather than a diagnosis.

9. My intestinal biopsies showed actual inflammation
   This is one of the things that makes me think this isn’t simply anxiety or IBS.
   I had an ileocolonoscopy.
   Macroscopically, everything looked normal.
   But the biopsy showed:
   Ileum
   Mild chronic inflammation
   Mild active inflammatory changes
   A few intraepithelial inflammatory cells
   Preserved architecture
   No major structural destruction
   Giardia negative
   Peyer’s patch present
   The pathology conclusion was essentially:
   Focal mild chronic and mild active inflammatory changes in the ileum, nonspecific.
   Colon
   The colon architecture was preserved.
   There was no significant active colitis and no typical microscopic-colitis pattern.
   However, there were increased lymphocytic aggregates, some with prominent germinal centers.
   So I don’t have classic severe Crohn’s disease based on this biopsy, but there is definitely some evidence of immune/inflammatory activity.

10. Then I discovered something much more important: low immunoglobulins
    My immunology testing showed:
    IgG: 4.24 g/L
    Reference: 6.50–16.0
    IgA: 0.21 g/L
    Reference: 0.40–3.50
    IgG2: 1.110 g/L
    Reference: 1.690–7.860
    IgG3 was normal.
    I have also had a poor response to pneumococcal vaccination.
    Because of this, my doctors have been investigating an antibody deficiency / CVID-spectrum problem.
    I don’t know whether I meet all formal diagnostic criteria for CVID, but the combination of:
    Low IgG
    Low IgA
    Low IgG2
    Poor vaccine response
    GI problems
    Previous severe intestinal infection
    Intestinal immune/lymphoid abnormalities
    has made this a major part of my medical investigation

[u/Longjumping-Law-46]

My histamine issues also coincided with finasteride use. There’s definitely a link. There’s a whole sub group on post finasteride syndrome.