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

[Aretaeus Cappadocia]

On 2/6/2026 at 6:48 PM, Known1 said:

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

You may want to consider getting a food dehydrator for your motorcycle touring. I evaluated getting one but decided against it because my personal business case didn't justify the costs (I occasionally travel by car and food bulk is not as much of an issue). However, if I wanted to travel by motorcycle as often as you I probably would have gotten one.

[Known1]

1 hour ago, Aretaeus Cappadocia said:

You may want to consider getting a food dehydrator for your motorcycle touring.

Thanks, that is a great idea!

[knitty kitty]

@Known1, 

I understand you have had your B12, Folate B 9, and Vitamin D level checked.  However there are other B vitamins that are not routinely checked because blood tests for other B vitamins are terribly unreliable, expensive, or cumbersome to use frequently.  Results can take a long time to get back, delaying proper treatment and risking permanent damage.  It's easiest to supplement and look for health improvement.

Blood tests can reflect how much of a certain vitamin was consumed in the past twenty-four to forty-eight hours.  Vitamins released by digestion is absorbed by villi, anemone like projections that increase the surface area of the small intestine, and then pass into the blood stream for distribution around the body.  A Marsh score of 3C indicates severe damage to the villi lining the small intestine.  Absorption of nutrients is definitely affected.  

Blood tests don't reflect the amount of a vitamin  that is stored inside cells before being used.  You can have "normal" blood levels but have deficiency within cells of organs and tissues.  Tissues and organs will relinquish their stored vitamins into the blood stream in order to keep the brain and heart working while tissues and organs are depleted.  

It's possible to have a localized deficiency of Thiamine B1 in different organs which cause the organ to malfunction.  Gastrointestinal Beriberi is caused by Thiamine deficiency in the gastrointestinal tract.  Gallbladder dysfunction, thyroid dysfunction, heart attack, and cognitive dysfunction can be caused by Thiamine deficiency.  

Most of the B vitamins cannot be stored for very long, maybe six weeks. B12 can be stored for as long as a year in the liver.  So having "normal" B 12 levels does not mean all your other vitamins are "normal" as well.  

Thiamine can be stored for eighteen days, however  Thiamine can be depleted within three days.  We have a greater metabolic demand for Thiamine when we're physically ill, emotionally stressed or are physically active (work out regularly) or work outdoors (or ride bikes). 

Because most B vitamins can become low within a month or two under the best of circumstances, many newly diagnosed feel great on the gluten free diet at first.  After that, they seem to start going downhill.   The nutritional deficits start making themselves known.  

Keep in mind that processed gluten free foods are not enriched nor fortified with vitamins and minerals to replace nutrients lost in processing like their gluten containing counterparts are.  You have to replace them yourself by taking supplements at least until the villi regrow and absorption improves.

The eight B vitamins are water soluble.  They are easily lost if one has diarrhea or constipation or in those with a high Marsh score.  Because they are water soluble, the body can easily excrete excess through the kidneys.  Recommended Daily Amounts are based on experiments done on humans to find the minimum dose required to prevent disease.  Levels for optimal health are much higher.  

Doctors are trained in medical learning institutions which are funded by pharmaceutical companies.  Requirements for nutritional education have been reduced to twenty class hours over the course of the seven years of medical school.   Three-day weekend seminars earn ten hours.  Vitamins cannot be patented as they are natural substances, so there is more profit for doctors to prescribe pharmaceuticals.  They are taught to cover symptoms with pharmaceutical bandaids.  They may not look for what caused symptoms to appear in the first place.  

Doctors are taught nutritional deficiencies don't occur except in impoverished or drought stricken countries.  This is not accurate.  Nutritional deficiencies can occur if you eat a High Carbohydrate Diet, eat the Standard American Diet, and if you have malabsorption problems as occur with Celiac Disease.  

You can check out my blog for the challenges I faced due to vitamin deficiencies that went unrecognized by doctors.  

Talk to your doctor and new dietician about supplementing with vitamins, minerals and essential nutrients while your villi are healing. 

My favorite Celiac book is The Paleo Approach by Dr. Sarah Ballantyne.  She explains the AutoImmune Protocol Diet.  It has been shown to reduce inflammation and promote healing in the gastrointestinal tract.

Best wishes!

[Known1]

57 minutes ago, knitty kitty said:

My favorite Celiac book is The Paleo Approach by Dr. Sarah Ballantyne.

It looks like she has a couple of books that share "The Paleo Approach" in the title.  I ordered this one, as the other is a cookbook.
The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body

Thanks again for the info.

[knitty kitty]

Yes, that's the one I was referring to! 

Good for you, being proactive!

Edited February 11 by knitty kitty
Typo correction

[Known1]

Thanks, at that price it was a complete no brainer.  I also went through the reviews and a number of folks with our ailment gave it 5-stars.  It won't be here until the end of the month, which may give me enough time to finish the books I have.

Also, in an effort to play it safe and see if I start feeling better again...I tossed out my remaining bananas and will keep them out of my diet for the next 6-months.  😀

Thank you for sharing your experiences and making recommendations to a noob like me.

[Known1]

On 2/7/2026 at 12:34 PM, RMJ said:

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.

Pardon me, I stand corrected.  I did find yet another blood test for thyroid function.

TSH W/REFLEX TO FT4:  2.91 mIU/L  (Range: 0.40 - 4.50)

As you can see, I was within the acceptable range when the test was performed.

[knitty kitty]

Being low in Thiamine B1 can cause fingers and toes to be cold all the time.  Thiamine deficiency affects body temperature regulation and sleep/wake cycles.  

Thiamine deficiency-induced disruptions in the diurnal rhythm and regulation of body temperature in the rat

https://pubmed.ncbi.nlm.nih.gov/9804367/

[Known1]

Thank you @knitty kitty.  I was reading some of your other posts and decided to add your preferred B-complex to my mix of vitamins.  I started taking this on 2/17 and plan to continue with them until my next blood draw in roughly 5 months.

Life Extension BioActive Complete B-Complex

I hope you have a great day ahead.

[Known1]

@knitty kitty Holy smokes, that Life Extension B-Complex is burning me up.  My multi-vitamin already has 25mg of Niacin.  The b-complex adds another 100mg on top of that.  My face, neck, and ears look like the Cardinal I use for my profile pic.  I have been on the b-complex for 10-days now and it seems to get a bit worse with each passing day.  I think I am going to drop down to taking 1/2 of the serving size.  In other words, 1 capsule instead of 2.  Hopefully dropping to one does the trick.

Have you noticed any side effects from that B-complex?  It is WAY over the daily recommended values:

Thanks for your time,
Known1

[knitty kitty]

Oh, dear, the niacin flush!  I've heard repeatedly that the worse the flush, the more your body needs the niacin.  If you stick with it, the flushing will not be as bad in a few days.  

Another way to correct low Niacin level is to take 100 mg of Niacin (nicotinic acid, the flushing kind) every three hours for several days.  I've done this myself, and found the flushing is very short lived.  

Stay hydrated.  The B's are water soluble, so if not needed, they'll be excreted.

Hang tight, you'll be okay!

[Known1]

@knitty kitty For me, the flushing lasts about 10 hours and not just 60-90 minutes after consuming the vitamins.  I am 10-days into taking this already.  My urine is neon colored around the clock and I drink between 1/2 to 3/4 of a gallon of water per day.  I'll stick with 2 a day for now, but am honestly quite hesitant to do so.

I am curious, where are you reading "the worse the flush, the more your body needs the niacin"?  I have been searching for that, but haven't found that anywhere.

 

[knitty kitty]

@Known1,

Search for "niacin flush fades the longer you use it" and "Niacin flush worse if deficient".  

It takes a couple to three weeks for the body to adjust and you're at that point now, so things should improve.

Riboflavin makes the neon color, which glows under black light.  If not absorbed, excreted.  Absorption of riboflavin will improve as the body starts healing the intestinal lining and villi grow back.  

You could skip the multivitamin instead.  

[Known1]

Thanks again, I'll keep pressing on.  🤞