Diagnosed Marsh stage 3C in January 2026

[Known1]

Hello all:

I am new here and very happy to find this resource.  I am from the upper midwest, USA.  Here is my story that led to my diagnosis.

After eating anything and everything whenever I choose to do so for over 51 years, things started to get strange around July of 2025.  While working in an airconditioned office, I started getting the chills throughout the day.  I checked with others in the office and they were all comfortable.  I have always been a big guy and traditionally have run hot.  I brought in my own thermometer and verified it was 71°F in the office.  Yet, I was still cold.  I ended up brining in a blanket and started wearing wool socks to work.  Yet I was still cold by the time I left to go home.  One day in September I was so cold after work that I drove 20-miles home with the windows up and A/C off while it was 85°F outside.  When I arrived home I was finally nice and warm and not a drop of sweat.

After dealing with these extreme chills for months, I had my annual physical on October.  My primary care physician figured he would ran some blood tests (non-celiac related) to see if anything was revealed.  The only thing a bit off was my vitamin D levels.  He suggested taking 2,000IU's to boost my levels.  Nothing else was suggested or found at that time.  In mid-December of 2025, after eating one of my old favorite Chic-fil-a meals, I developed a severe case of (what I call) bubble gut.  I took some Pepto, which seemed to help.  I then had black-stools and self diagnosed myself as having a bleeding ulcer.  I adjusted my diet based on what I found on the internet pertaining to ulcers.  I was still eating gluten though.

The bubble gut continued for weeks.  After celebrating Christmas, I made it to another family doctor on January 2nd of 2026.  The doctor stated the Pepto was likely the root cause for my black stools and figured I did not have an ulcer, but suggested an esophageal endoscopy to make sure.  This doctor also prescribed an acid-reflux med 2x a day for 60-days.  The endoscopy took place the following week.  After waking from my anesthetic, that doctor stated I likely have celiac, which would account for my chills.  She took some tissue to run a biopsy against to confirm her suspicions.

A few days later, the biopsy came back as likely celiac.  The next step was to run the celiac related blood tests.  I was told to continue to eat as I had been and not to change my diet.  I was still avoiding fried foods and eating as if I had an ulcer.  Even though the GI doctor stated I did not have an ulcer.  Between mid-December and mid-January I lost 20lbs on my "ulcer diet".  Being nearly 6'2" I dropped from 260 to 240.  The blood work came back and surprisingly, all of my vitamin levels were in the normal range.  For some reason, they did not run another vitamin D test.  My t-Transglutaminase (tTG) IgA test came back as a 27 when the acceptable range is 0-3.  This was the 100% confirmation that the GI doctor needed to diagnose marsh c3 celiac.  I was told to begin a gluten-free diet immediately.

I met with a dietitian on January 16th.  She answered all of my questions and provided links to some great resources.  I picked up a couple of books and started doing my homework.  Within a week my bubble gut was gone and my stools were starting to look more normal, meaning not so light in color.  Just earlier this week, on February 2nd I had my in person follow-up appointment with a GI doctor to go over everything.  More questions were answered and next steps were discussed.  They want to see me in 6-months to draw blood and schedule a bone density test.

My chills have subsided, but I still feel cold more often than I used to.  I live alone, which made creating a gluten-free kitchen super simple.  A few new utensils, new cutting board, and a toaster along with a bit of cleaning...all set.  Like everyone says, focus on what you can eat and not what you cannot eat.  Thus far I am not missing any of my old favorites and am actually enjoying this diet.  I have yet to eat out, but there are a lot of great options in my area.  I live in a metropolis so gluten-free options abound.  The only real concern that I have yet to tackle is traveling.  Being a motorcycle enthusiast, I often tour for days or at least several weekends every summer.  Adjustments will have to be made along with proper planning for major holidays.

Yikes, this is getting pretty long.  If you made it this far thanks for reading!  Again, I am happy to have found this resource and look forward to getting to know and learn from others that share my newly discovered disease.

Known1

[Known1]

Please forgive my typos in my original post.  I tried to edit, but didn't know I only had so much time to do so.

[knitty kitty]

Hi, @Known1,

Did they check for anemia?  Anemia can make you feel frozen on a summer's day.  Anemia in men is often overlooked.  Iron can be low with Celiac.  How was your B12 level?

I loved touring I-90 and I-80.  Beautiful country.

[Known1]

Thank you for your reply.  I do not believe they checked for anemia.  Likely because all my levels were/are in the acceptable range.  🤷‍♂️  Other than D that is, which was barely outside of acceptable range.  My vitamin D was 29ng/mL and acceptable range starts at 30.

Description Result Units Range
Iron 51 ug/dL 38-169
Iron Bind.Cap.(TIBC) 319 ug/dL 250-450
Iron Saturation 16 % 15-55
UIBC 268 ug/dL 111-343

Description Result Units Range
BUN 14 mg/dL 6-24
BUN/Creatinine Ratio 18 9-20
Carbon Dioxide, Total 21 mmol/L 20-29
Calcium 9.3 mg/dL 8.7-10.2
Chloride 103 mmol/L 96-106
Creatinine 0.80 mg/dL 0.76-1.27
eGFR 107 mL/min/1.7 >59
Glucose 100 mg/dL H 70-99 - I ate about 20 minutes prior to blood draw.
Potassium 4.6 mmol/L 3.5-5.2
Sodium 139 mmol/L 134-144

Description Result Units Range
Ferritin 405 ng/mL H 30-400 - Was told not to concern myself with this being a bit outside of range.

Description Result Units Range
Vitamin B12 563 pg/mL 232-1245

Description Result Units Range
Folate (Folic Acid), Serum 9.0 ng/mL >3.0

Description Result Units Range
Immunoglobulin A, Qn, Serum 225 mg/dL 90-386
t-Transglutaminase (tTG) IgA 27 U/mL 0-3 - This was confirmation of celiac after the biopsy.  I had things done in the opposite order, as usually the biopsy is after the blood test.

Kindest Regards,
Known1

[Known1]

Found more blood test results.  These were ran by the family doctor on January 2nd, prior to celiac diagnosis a couple weeks later:

HEPATIC FUNCTION PANEL
ALBUMIN:  4.9 g/dL  (Range: 3.6 - 5.1)
ALBUMIN/GLOBULIN RATIO:  2.0 (calc)  (Range: 1.0 - 2.5)
ALKALINE PHOSPHATASE:  122 U/L  (Range: 35 - 144)
ALT:  17 U/L  (Range: 9 - 46)
AST:  26 U/L  (Range: 10 - 35)
BILIRUBIN, DIRECT:  0.1 mg/dL  (Range: < OR = 0.2)
BILIRUBIN, INDIRECT:  0.5 mg/dL (calc)  (Range: 0.2 - 1.2)
BILIRUBIN, TOTAL:  0.6 mg/dL  (Range: 0.2 - 1.2)
GLOBULIN:  2.4 g/dL (calc)  (Range: 1.9 - 3.7)
PROTEIN, TOTAL:  7.3 g/dL  (Range: 6.1 - 8.1)

CBC WITH AUTO DIFFERENTIAL
ABSOLUTE BASOPHILS:  40 cells/uL  (Range: 0 - 200)
ABSOLUTE EOSINOPHILS:  30 cells/uL  (Range: 15 - 500)
ABSOLUTE LYMPHOCYTES:  1360 cells/uL  (Range: 850 - 3900)
ABSOLUTE MONOCYTES:  880 cells/uL  (Range: 200 - 950)
ABSOLUTE NEUTROPHILS:  7690 cells/uL  (Range: 1500 - 7800)
BASOPHILS:  0.4 %
EOSINOPHILS:  0.3 %
HEMATOCRIT:  52.4 %  (Range: 39.4 - 51.1) - Was told not to concern myself with this and to drink more water.
HEMOGLOBIN:  17.0 g/dL  (Range: 13.2 - 17.1)
LYMPHOCYTES:  13.6 %
MCH:  28.7 pg  (Range: 27.0 - 33.0)
MCHC:  32.4 g/dL  (Range: 31.6 - 35.4)
MCV:  88.5 fL  (Range: 81.4 - 101.7)
MONOCYTES:  8.8 %
MPV:  10.0 fL  (Range: 7.5 - 12.5)
NEUTROPHILS:  76.9 %
PLATELET COUNT:  307 Thousand/uL  (Range: 140 - 400)
RDW:  12.3 %  (Range: 11.0 - 15.0)
RED BLOOD CELL COUNT:  5.92 Million/uL  (Range: 4.20 - 5.80) - Was told not to concern myself with this and to drink more water.
WHITE BLOOD CELL COUNT:  10.0 Thousand/uL  (Range: 3.8 - 10.8)

LIPASE
LIPASE:  20 U/L  (Range: 7 - 60)

[RMJ]

Welcome to the forum!

Did your doctors run any tests for low thyroid? I don’t see any in what you have posted. Hypothyroidism can cause chills.

[Known1]

Not that I am aware of.  I posted all of the blood test results that I could find.  Should extreme chills continue, I'll add this to my list of question for my 6-month follow up.  So far I feel like the chills are getting better.  🤞

Thanks again,
Known1