Bile reflux with celiac

[birdboyden]

My child, age 19, self diagnosed her celiac 3 years ago.  After many years of symptoms she went gluten free and it was amazing.  It relieved cramping, gas, bloating, chronic fatigue, headaches and rashes.  Her Dr. said it was not worth testing given that the results were so clear, they were confidant it was celiac.  After about 6 months, symptoms gradually reappeared.  Not as bad as gluten exposure, but she feels unwell after almost every meal.  She believes she is sensitive to dairy and is trying to eliminate that as well.  She now has frequent pain and nausea, leading to vomiting bile.  She can still tell when she has been contaminated with gluten, and says that there are slightly different sets of symptoms.  First visit to GI, they ordered antibody tests and cancelled her follow up since tests came back negative- after we explained that she was on a strict gluten-free diet.  Second GI ordered an endoscopy.  Found esophagitis, duodenitis, and gastritis from bile in her stomach.  Most concerning, her pyloric valve was fully open (patulous pyloris), which is usually only seen after gallbladder or gastric bypass surgery and is very rare.  So, bile is moving into her stomach, causing a host of symptoms every time she eats and putting her at risk for ulcers, stomach cancer, etc...  An ultrasound revealed no problems with her gallbladder.  He has no suggestions other than taking Prilosec, and said there is no "cure".  I guess my question is if anyone has any familiarity with any of this.  It seems like a strange coincidence that she would have this congenital defect, so I wonder if the chronic inflammation from 17 years of eating gluten could have caused a malfunction in her valve.  I found one article suggesting a correlation with the condition and cdiff infection.  The icing on the cake is that she also has never been able to burp so has tremendous chest pain and pressure and bloating from gas.  The endoscopy confirmed the issue, so we are seeing another specialist at the Cleveland Clinic to diagnose R-CPD, which means her upper esophageal muscle is closed and can't open.  They can treat it with Botox.  Any thoughts or insights would help me.  I have a very unhappy child and am trying to navigate next best steps, what kinds of doctors to work with, etc....

[Scott Adams]

Your daughter's case seems complex, and it's great that she's seeking medical attention. Here are some considerations:

Gastroenterologist Follow-Up: Even with negative antibody tests, the endoscopy results indicating esophagitis, duodenitis, and gastritis are significant. Following up with a gastroenterologist to discuss these findings, their implications, and potential treatment options is crucial. 

Nutritional Assessment: Celiac disease and possible complications might lead to nutritional deficiencies. A registered dietitian experienced in celiac disease can assess her diet, provide guidance on managing celiac disease, and address any potential nutrient deficiencies.

Second Opinions: Given the complexity of her case, seeking second opinions from specialists, such as gastroenterologists or hepatobiliary surgeons, might be beneficial. They can provide additional perspectives and treatment options.

Functional GI Disorders: Conditions like a patulous pylorus are rare, and it's essential to explore all possibilities. Functional gastrointestinal disorders (FGIDs) might be considered, and working with specialists familiar with these disorders, such as a motility specialist, could be helpful.

Celiac Disease Management: Even with a gluten-free diet, celiac disease management can be challenging. Cross-contamination or hidden gluten in processed foods may contribute to ongoing symptoms. 

Remember, these suggestions are not a substitute for professional medical advice. 

[Wheatwacked]

On 1/12/2024 at 1:43 PM, birdboyden said:

which is usually only seen after gallbladder or gastric bypass surgery

Nutrient Deficiencies are common in Celiacs who switch to a gluten free diet of processed foods, without realizing that gluten free foods are not fortified as non gluten free foods are; so after six months they start seeing symptoms of various deficiencies.  

     Is she eating enough eggs, beef and liver to supply her with enough choline?  We need between at least 500 mg minimum and 3000 mg a day.  The minimal side effects; fishy body oder and low blood pressure; start around 7000 mg a day.  Choline is the major salt component of bile.

    Most non gluten free processed foods are supplemented with folic acid.  Folate and Choline neutralize homocysteine (an independent indicator of inflammation) so when folate is insufficient we need more Choline to keep inflammation from high homocysteine down.  But choline is the main bile salt and deficiency in bile salts makes bile thicker and harder to flow through the bile duct to the small intestine where it helps process fats and and this thick bile could possibly be causing the bile reflux.  Since doctors rarely look at choline, eventually someone will recommend gall bladder surgery. Don't do it nor Botox except as a last resort. It can't be undone.  As many here found out the surgery is only a temporary fix and would require a special gall bladder diet and medications.  Not really a solution, more a panacea.

I would suggest adding choline to her diet, either by eating more eggs (four a day supplies the AI) and beef Choline Fact Sheet for Health Professionals or purchasing choline or phosphatidyl choline as dietary supplements.  Also get blood homocysteine level tested and for good luck get plasma vitamin D tested.  High homocysteine can be caused by insufficient choline, folate, B6 or B12.

Comparatively, it takes 4 eggs or 10 cups of cooked brocolli a day to reach Adequate Intake.

Choline and folate are important in preventing neural tube defects in pregnancy. 

  Most doctors don't have choline on their radar.

Quote

only about 10% of health professionals indicate moderate familiarity with choline.... Data indicate that increasing consumption of plant foods may offer health benefits; however, this means that there is a need to include more plant foods in the diet, but not necessarily eliminate nutrient-dense animal-derived foods such as eggs, lean meat, and milk products that contain choline. ... With only an estimated 10% of the US population achieving the AIs and no indication of excessive intakes above the ULs that were set in 1998, coupled with compelling evidence of negative health outcomes associated with lower choline intakes and the absence of harm, the summit participants agreed that there is a need to increase public and health professional awareness of choline... most of the US population does not meet the current AIs and that excessive intakes above the ULs are absent...   Choline The Underconsumed and Underappreciated Essential Nutrient

 

[knitty kitty]

@birdboyden, 

Hello.  What a concerning situation! 

I've had gallbladder problems before my Celiac diagnosis.  Problems with my gallbladder were caused by nutritional deficiencies.  Malabsorption affects all the vitamins and minerals we need.   

Damage to the lining of the small intestine caused by the autoimmune response in Celiac can result in poor absorption of the essential nutrients.  Even on a strict gluten free diet, malabsorption can be a continuing problem.  The small intestine needs time to heal and become able to absorb sufficient nutrients.  Eating a nutritionally dense diet is important.  Gluten free processed foods are lacking in nutritional value though.  Unfortunately, many medications like Omeprazole (PPI's), can block absorption of certain nutrients like Thiamine Vitamin B 1. 

Gallbladder dysfunction and other gastrointestinal problems may be symptoms of Thiamine Vitamin B 1 deficiency, called Gastrointestinal Beriberi.   People with absorption problems like alcoholics and those who have had gastric bypass surgery have malabsorption problems and can develop Gastrointestinal Beriberi, too.  

Other symptoms of Gastrointestinal Beriberi include hypochlorhydria (low stomach acid) which causes Gerd, reflux, poor digestion of food, and, therefore, more malabsorption of nutrients.  Niacin Vitamin B 3 is needed to make and secrete digestive enzymes, along with Thiamine.  When you have sufficient Niacin, and hence, stomach acid, you are able to burp.  

Thiamine deficiency can affect the production and secretion of bile from the gallbladder.  The muscles that open and close the bile duct, as well as sphincter muscles in the stomach and throat, can be affected as well.  Eosinophilic Esophagus is also seen in Thiamine deficiency.

Abdominal pain, gastroparesis, nausea and vomiting are more symptoms.  Yes, your daughter is correct, the symptoms are subtly different than symptoms caused by gluten.  I could feel the the difference myself.  

I had all the symptoms of Gastrointestinal Beriberi but my doctors didn't recognize Thiamine deficiency outside of alcoholism.  They kept asking if I drank because I was showing symptoms of Wernicke's Encephalopathy, thiamine deficiency in the brain, which affects thinking, memory, balance, and muscle control.  I don't drink, so the doctors sent me home.  But their question rang a bell.  I had studied nutrition as well as earning a degree in Microbiology at university.  I had Wernicke's and simple over the counter Thiamine Hydrochloride, Allithiamine (Tetrahydrofurfuryl Disulfide - TTFD) and Benfotiamine (sulbutiamine) supplementation corrected it.  Thiamine is water soluble, and nontoxic even at high doses.  I had symptom improvement within an hour.  If it walks like a duck....Occam's razor...

A doctor is able to administer intravenous Thiamine in high doses needed to correct Thiamine deficiency quickly in order to prevent permanent damage.  Thiamine deficiency can occur without abnormal blood levels.  Blood tests for nutritional deficiencies should be done prior to starting supplementation.  The Erythrocyte Transketolase test is a better test for Thiamine deficiency, although it takes a long time to get results back, so the World Health Organization recommends prompt administration of Thiamine and looking for health improvements.  Thiamine deficiency can cause brain damage if left untreated.  I cannot read music nor do math anymore.

Talk to the doctors about Gastrointestinal Beriberi. 

Praying my experience be helpful.

References:

Beriberi disease in an 11-year-old girl with total colectomy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6208053/

...Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

...Rare Presentation of Thiamine Deficiency as Gastrointestinal Syndrome

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4175961/

...Gastrointestinal beriberi: a forme fruste of Wernicke’s encephalopathy?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040496/

...A Summertime Stupor

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7306676/

...Acute Cholecystitis in a Gastric Bypass Patient Complicated by Takotsubo Cardiomyopathy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9278497/

...Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6739701/

...Wernicke's encephalopathy in chronic gastropancreatic disease with pyloric stenosis

https://pubmed.ncbi.nlm.nih.gov/6814885/

...Gross and histological changes in the gall-bladder in Beriberi 

https://academic.oup.com/trstmh/article-abstract/22/3/285/1924309?redirectedFrom=fulltext

...Failure to monitor thiamine levels

https://hub.tmlt.org/case-studies/failure-to-monitor-thiamine-levels

[Tyoung]

Hey! How is your daughter doing now? I am dealing with very similar issues! All started after going gluten free after being diagnosed with celiacs