Celiac Disease Masquerades as Extreme Thrombocytosis and Severe Anemia in a 52-Year-Old Female Patient

I, too, presented with a mild anemia with elevated platelet counts in my early 70s though.  Of course, the thought was I was bleeding from somewhere and a colonoscopy was scheduled.  I mentioned on my pre procedure questionnaire that I was taking large doses of vitamin D3 for very poor absorption of of this particular vitamin.  The MD doing the procedure recommended doing a gastroscopy with small bowel bx at the same time as the colonoscopy.  I've been very grateful to that doctor who has since retired for putting 2 and 2 together.  The results showed positive small intestine damage.  Follow up blood work showed very elevated gluten titers.  I have been strictly off gluten for long stretches but have recently been "glutened" twice in restaurants ordering off " gluten free" menus!!  The results are dramatically severe vomiting and diarrhea for several hours followed by fatigue and dizziness for several days following.  My mild anemia platelet situation still exists even though my iron levels are normal.  I wonder just how much damage has been done to the small intestine and would it be wise to follow up with an internist/nutritionist at my age of 79?

"The patient showed no gastrointestinal symptoms, and had no family history of gastroenterological diseases."

Highlights the reality of "silent" celiac disease which most doctors don't have a concept for but is very common in the celiac population.

@Phyllis Stempinski, Welcome to the forum!

Yes, do follow up with your internist and nutritionist.  Checking for nutritional deficiencies is part of proper follow up care for Celiac people.  

It's unusual to be deficient in just one vitamin.   Usually Celiacs have poor absorption of the eight essential B vitamins and minerals like magnesium and zinc which all help with anemia.  

Best wishes.

5 hours ago, Phyllis Stempinski said:

I, too, presented with a mild anemia with elevated platelet counts in my early 70s though.  Of course, the thought was I was bleeding from somewhere and a colonoscopy was scheduled.  I mentioned on my pre procedure questionnaire that I was taking large doses of vitamin D3 for very poor absorption of of this particular vitamin.  The MD doing the procedure recommended doing a gastroscopy with small bowel bx at the same time as the colonoscopy.  I've been very grateful to that doctor who has since retired for putting 2 and 2 together.  The results showed positive small intestine damage.  Follow up blood work showed very elevated gluten titers.  I have been strictly off gluten for long stretches but have recently been "glutened" twice in restaurants ordering off " gluten free" menus!!  The results are dramatically severe vomiting and diarrhea for several hours followed by fatigue and dizziness for several days following.  My mild anemia platelet situation still exists even though my iron levels are normal.  I wonder just how much damage has been done to the small intestine and would it be wise to follow up with an internist/nutritionist at my age of 79?

Same thing happened to me.  Though I've had IBS since childhood, I never had upper gastrointestinal symptoms--no GERD, no upset tummy.  All of a sudden I developed severe anemia --in between two A1Cs, so within 3 months.  Doctor removed a small ulcer that wasn't bleeding but might have.  No improvement for a year.  Then he hit on celiac disease.  I take supplemental iron and Vitamin D; the iron keeps me at low normal and the D works.  And boy--that vomiting from food claiming to be gluten free.  It has hospitalized me twice.  The things that got me were a) rice dumplings where the server didn't understand about soy sauce and b) sushi labeled as crab when it was in fact imitation crab.  (I have found a local sushi place now that is VERY knowledgeable about gluten.)

gluten-free diet did nothing for the IBS.  It has haunted me now for about 72 years.  I too am 79.  If your problem is gastrointestinal, be sure to tell the doctor WHERE the symptoms are. Purely colon issues won't be fixed; upper intestines might be.  

1 hour ago, Auldtwa said:

Same thing happened to me.  Though I've had IBS since childhood, I never had upper gastrointestinal symptoms--no GERD, no upset tummy.  All of a sudden I developed severe anemia --in between two A1Cs, so within 3 months.  Doctor removed a small ulcer that wasn't bleeding but might have.  No improvement for a year.  Then he hit on celiac disease.  I take supplemental iron and Vitamin D; the iron keeps me at low normal and the D works.  And boy--that vomiting from food claiming to be gluten free.  It has hospitalized me twice.  The things that got me were a) rice dumplings where the server didn't understand about soy sauce and b) sushi labeled as crab when it was in fact imitation crab.  (I have found a local sushi place now that is VERY knowledgeable about gluten.)

gluten-free diet did nothing for the IBS.  It has haunted me now for about 72 years.  I too am 79.  If your problem is gastrointestinal, be sure to tell the doctor WHERE the symptoms are. Purely colon issues won't be fixed; upper intestines might be.  

Thanks for sharing.  I feel bad for your having IBS since childhood.  At least someone figured out your celiac issue.  So scary thinking how easily you can be served something at a restaurant that can get you so sick.  I don't know if I can do the severe diarrhea and vomiting at the same time for several hours and survive.  Had cardiac arrhythmia the last 2 times.  Fi gers crossed for both of us.

2 hours ago, Phyllis Stempinski said:

Thanks for sharing.  I feel bad for your having IBS since childhood.  At least someone figured out your celiac issue.  So scary thinking how easily you can be served something at a restaurant that can get you so sick.  I don't know if I can do the severe diarrhea and vomiting at the same time for several hours and survive.  Had cardiac arrhythmia the last 2 times.  Fi gers crossed for both of us.

Symptoms vary greatly between people both in spectrum and severity. Some people seem to be able to tolerate very occasional ingestion of large amounts of gluten without symptoms, other people become very ill with even trace amounts. I had a cardiac arrhythmia and wore a 24 hour monitor several times to try to get to the bottom of it but it has disappeared since I was diagnosed and went gluten-free. I haven't had a follow-up ECG, but I don't have any symptoms. I used to get almost painful ectopic beats and occasional fluttering sensation.

Just now, Russ H said:

Symptoms vary greatly between people both in spectrum and severity. Some people seem to be able to tolerate very occasional ingestion of large amounts of gluten without symptoms, other people become very ill with even trace amounts. I had a cardiac arrhythmia and wore a 24 hour monitor several times to try to get to the bottom of it but it has disappeared since I was diagnosed and went gluten-free. I haven't had a follow-up ECG, but I don't have any symptoms. I used to get almost painful ectopic beats and occasional fluttering sensation.

yes.  I seem to be able to handle trace gluten. At least a McDonald's french fry only screws my blood sugar, not my gut.  If there's enough to warrant a warning on the package, it will send me to the barf bag.  A McDonald's Bun would do me in before I got out of the parking lot.

Cardiac arrhythmia can be a symptom of Thiamine deficiency.  IBS symptoms overlap with Gastrointestinal Beriberi in Thiamine deficiency.  

Benfotiamine, a form of Thiamine, has been studied and shown to promote healing in the gastrointestinal tract.  

Thiamine is one of eight water soluble B Complex vitamins.  We need all eight to live and heal.  Our bodies cannot store B vitamins for long and with damaged villi from Celiac Disease causing malabsorption, it's beneficial to supplement these B vitamins, especially Thiamine, after diagnosis.  

4 minutes ago, knitty kitty said:

Cardiac arrhythmia can be a symptom of Thiamine deficiency.  IBS symptoms overlap with Gastrointestinal Beriberi in Thiamine deficiency.  

Benfotiamine, a form of Thiamine, has been studied and shown to promote healing in the gastrointestinal tract.  

Thiamine is one of eight water soluble B Complex vitamins.  We need all eight to live and heal.  Our bodies cannot store B vitamins for long and with damaged villi from Celiac Disease causing malabsorption, it's beneficial to supplement these B vitamins, especially Thiamine, after diagnosis.  

Thank you.. Helpful to mention B vitamins.  I will see to getting a micro and macro vitamin assay again.  Passed except for vitamin D level several years ago

2 minutes ago, Phyllis Stempinski said:

Thank you.. Helpful to mention B vitamins.  I will see to getting a micro and macro vitamin assay again.  Passed except for vitamin D level several years ago

I think it is worth taking a good multivitamin for coeliac disease.

Be aware blood levels do not accurately reflect the level of vitamins being stored and utilized inside cells and tissues.  The vitamins inside cells can be depleted while blood levels show "normal" levels.  These are confiscated to keep the brain and heart supplied, while other organs do without.

Blood levels can reflect how much of the vitamin you've consumed in the previous day or two.  

Do Not start supplementing before you have your blood drawn for your vitamin assay.  Supplementing before testing will reflect the supplements ingested.

After testing and talking to your doctor, supplement with B Complex vitamins and look for health improvement.  If not needed, water soluble B vitamins are easily excreted in urine.  

Best wishes.

On 8/15/2023 at 8:50 AM, Phyllis Stempinski said:

I was taking large doses of vitamin D3

What do you consider large dose.  I am 72 and have to take 10,000 IU a day to maintain 80 ng/ml (200 nmol/L).  

Quote

       Surge of information on benefits of vitamin D   Of the first 1,500 patients McCarthy tested, 40% began with vitamin D levels less than 20 ng/mL and 70% less than 35 ng/mL. Only 1% initially had values within his target range.

According to McCarthy, his target range is based upon several factors:

• A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;
• Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;
• Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;
• More than 200 polymorphisms of the vitamin D receptor requiring higher D levels to attain same desired outcomes;
• When a patient misses dosing, an attained level of 80 ng/mL gives the patient an additional month of good levels off of vitamin D.

       Mayo Clinic Proceedings: Vitamin D Is Not as Toxic as Was Once Thought   "The evidence is clear that vitamin D toxicity is one of the rarest medical conditions... Ekwaru et al16 recently reported on more than 17,000 healthy adult volunteers participating in a preventative health program and taking varying doses of vitamin D up to 20,000 IU/d. These patients did not demonstrate any toxicity, and the blood level of 25(OH)D in those taking even 20,000 IU/d was less than 100 ng/mL"