Lung transplant and celiac disease

[Jujuconnor]

Recent lung transplant patient (7 months).  Procedure done at Mayo, the best care available in my opinion.  Long story short, I had 2 days left with my lungs.  Was on life support for 40 days and in ICU for 90 days.  I had to learn how to walk, eat & swallow all over again.  I also had kidney failure - was on dialysis for months, diabetes and diarrhea since I woke up from life support.  Finally just 3 weeks ago I was diagnosed with celiac and hashimotos disease, at mayo.  I was told the celiac can just show up for no reason after surgery.  I’ve been gluten free since diagnosis but still have the diarrhea and bloating.  Will it ever stop?  

[knitty kitty]

Welcome to the forum, @Jujuconnor!

Wow, you have been through the wringer!  Glad you're here!

Yes, it's not unusual for Celiac Disease to show up after a physical illness or injury, or after emotional stress.  During those intensely stressful times, the body can run low on vitamins and minerals needed to keep us healthy.  Poor nutritional status can contribute to illnesses.

Celiac Disease can also occur without drastic overt symptoms for years.  We call these silent Celiacs.  But, since even silent Celiac Disease affects the absorption of vitamins and minerals in the small intestine, these deficiencies can accrue over time and can affect our health.  Correcting deficiencies is part of proper follow up care.  Have you been checked for vitamin deficiencies?

There are eight essential B vitamins, Vitamin C, and four fat based vitamins (A, D, E, and K) that our bodies need to get from foods because we cannot make them. 

Thiamine is one of the B vitamins.  Insufficient Thiamine causes all sorts of health problems, including diabetes, Hashimoto's, pulmonary hypertension, and even gastrointestinal symptoms.  Every cell in the body needs Thiamine for energy production.  Without sufficient thiamine, organs can't function properly and our bodies become ill. 

I was deficient in essential nutrients.  I had developed thyroid problems, diabetes, gall bladder dysfunction, gastrointestinal beriberi, and more.  High dose Thiamine supplementation and correcting my vitamin and mineral deficiencies has improved my health.  My doctors had missed my nutritional deficiencies.  Most doctors don't recognize nutritional deficiencies.  Do discuss with your doctor and nutritionist the benefits of supplementing with vitamins while you are healing!

Keep us posted on your progress!

References and Reading material:

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

Thiamine status in end-stage chronic kidney disease patients: a single-center study

https://pubmed.ncbi.nlm.nih.gov/30182293/

Associations between early thiamine administration and clinical outcomes in critically ill patients with acute kidney injury

https://pubmed.ncbi.nlm.nih.gov/34392848/

Hypothyroidism Complicated by Vitamin C and Thiamin Deficiency in Surgical Patients

https://pubmed.ncbi.nlm.nih.gov/37278003/

Thiamine Level in Type I and Type II Diabetes Mellitus Patients: A Comparative Study Focusing on Hematological and Biochemical Evaluations

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7282352/

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

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

Beriberi: A Reversible Cause of Acute Severe Pulmonary Hypertension

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9418637/

Thiamine-responsive pulmonary hypertension

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3604427/

Thiamine and Hashimoto's thyroiditis: a report of three cases

https://pubmed.ncbi.nlm.nih.gov/24351023/

[Jujuconnor]

I will get the Thiamine checked, if they haven’t already.  I was diagnosed with celiac from blood test, colonoscopy and biopsy.  The “fingers” in my small intestine are gone and I have “pockets”.   It sounds like Thiamine might be the cause of many of my other problems also.  Thank you so much for your help…….and quick response…..

[knitty kitty]

@Jujuconnor,

I had a bumpy journey to Celiac diagnosis myself.  I'm thankful I can help others.  

The "fingers" are the villi in the small intestine that absorb nutrients.  The crypts are those "pockets," signifying severe damage over time.

Because your absorption is so poor, you may benefit from intravenous vitamin supplementation.  Vitamin deficiencies should be corrected as quickly as possible.

Please keep us posted on your progress towards healing! 

[Wheatwacked]

 

Vitamin D deficiency among hospitalized patients may be more widespread than realized.

1 hour ago, Jujuconnor said:

but still have the diarrhea and bloating.  Will it ever stop?  

      Poor fat digestion due to low choline.    Choline can help with that. If you were on parenteral nutrition, in the US even though it is a known essential nutrient and is used in Europe, no one in the US has FDA approval so people die.   Could we be overlooking a potential choline crisis in the United Kingdom? In 2011 the EFSA21authorised a number of choline-related health claims. It was concluded that a cause and effect relationship had been established between the following: (1) “choline is needed for lipids metabolism”, (2) “maintaining healthy liver functioning” and (3) “reduction in homocysteine levels”. 

        Essential nature of choline with implications for total parenteral nutrition    Studies in patients receiving long-term TPN have shown that low levels of plasma choline are common and can be associated with hepatic steatosis. Treatment of these patients with oral administration of choline improved plasma levels and decreased hepatic fat content  

        Vitamin D and critical illness  Vitamin D deficiency has been shown to be associated with sepsis, acute respiratory distress syndrome and acute kidney injury (17, 18, 19, 20) and three different meta-analyses confirm that patients with low vitamin D status have a longer ICU stay and increased morbidity and mortality 

[Jujuconnor]

Thank you……they did put me on 1000mg vitamin D.   Have been taking for a few months.  Have only been home for a couple weeks, was in transplant center for 3 months after hospital.   Plus, last month in hospital for 2 weeks with Covid.   It never ends, but I’m glad I’m getting answers! 

[knitty kitty]

Vitamin D is a start.  

Doctors are not given much education about nutrients.  Nutritional deficiencies are looked on as a thing of the past or as occurring in third world countries. 

The malnutrition aspect in Celiac Disease is often overlooked.  It's heartbreaking.

Gluten containing products are required by law to be enriched with vitamins and minerals lost in processing.  Once gluten free, this source of vitamins is no longer available.  Gluten free facsimile foods are not required to be enriched with vitamins.  So we need to make sure we consume nutritionally dense foods and supplements.

Since our absorption of nutrients is so affected, supplementing with vitamins and minerals is important.

Supplementing with a B Complex, high dose Thiamine and magnesium can help, too, in addition to the Vitamin D..

 

Micronutrient therapy and effective immune response: a promising approach for management of COVID-19

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8220424/

[Jujuconnor]

Thanks again….they want me to take slow mag, 3X day.  It really upsets my stomach and makes the diarrhea worse, so I cannot take it until this diarrhea stops.  Sometimes they give it to me by IV.   I will definitely have the thiamine & B complex checked.  And any others mentioned earlier……….

[knitty kitty]

I take Magnesium Glycinate because it is very easy on the digestive system.  

I had diarrhea taking magnesium oxide (pulls fluid into digestive tract) and magnesium citrate wasn't much better.  

[trents]

Yes, look into magnesium glycinate. It is absorbed much better than magnesium oxide and this also makes it much less likely to cause diarrhea.

[Wheatwacked]

Hi Jujuconner.  Welcome.  Do they know what the cause was?

The dosage of vitamin D is not as important as your 25 Hydroxy vitamin D blood plasma level.  The Vitamin D receptors are virtually the internet of our bodies.  I take 10,000 IU a day for the past 8 years and plasma is steady at 80 ng/ml.  

            Single Ultra-High-Dose Cholecalciferol to Prevent Vitamin D Deficiency in Pediatric Hematopoietic Stem Cell Transplantation   A single enteral vitamin D dose (maximum 600,000 IU) was administered to each patient 

        Low vitamin D levels are associated with increased rejection and infections after lung transplantation    "  Conclusions: Low serum 25(OH)D levels in lung transplant recipients were associated with increased incidence of acute rejection and infection. The mortality of recipients who remained deficient 1 year post-transplant was higher than that of recipients who maintained normal vitamin D levels at 1 year post-transplant."

I like Cherry Magnesium Citrate.  . Once ounce in a 20 once cup of water with ice.  Tastes like lemonade to me.  Hydrates and one once of the mag citrate is 290 mg of ionized magnesium,  Already ionized so very fast absorption.  The whole 10 ounce bottle is prescribed the day before GI x-rays.  10 once bottle $3

Because of the Hasimoto diagnosis check that you are getting enough iodine in your diet.  125 mcg is only enough to prevent goiter.  The Tolerable Safe Upper Limit in the US is 1160 ncg,  In Japan it is 3000 mcg.  Thyroxine only supplies the iodine in thyroid hormone, totally ignoring the 20% found in other tisses and the amount needed to heal wounds.

      So these three: Thiamine, Vitamin D at a high enough dose, and Choline should have you starting to feel better almost immediately if they are the problem.  If not it is stilled good for you.

That doesn't let you off the hook for the other 20 odd vitamins absorbed in the intestine.

 

[Jujuconnor]

Lol.  I was told the transplant surgery itself or months with feeding tube may be the cause.  
I do have kidney disease (injury) so it’s a double edged sword with decisions regarding treatment. (Iodine) My kidney was able to heal enough to stop dialysis and not get on the transplant list (for now). 
thank you for all your help, greatly appreciated and I will follow your suggestions.   

[Jujuconnor]

One more question…………….headaches daily since going gluten free.  My lung coordinator says it might be from going cold turkey.   I appreciate all the help and support.  

[trents]

8 minutes ago, Jujuconnor said:

One more question…………….headaches daily since going gluten free.  My lung coordinator says it might be from going cold turkey.   I appreciate all the help and support.  

The headaches are possibly related to gluten withdrawal. If so, you are three weeks out now and that should subside soon. In general, headaches/migraines are more common in the celiac population than in the general population. I personally suffer from them and have for 20 years beginning soon after diagnosis and I'm careful about avoiding gluten. So, the headaches may not be caused by withdrawal but rather just having celiac disease. They can also be related to MCAS/histamine intolerance which is very common in the celiac population and I tend to think that is true in my case.

Edited October 15, 2023 by trents

[knitty kitty]

My migraines went away after I corrected my Thiamine deficiency.  I used to have headaches frequently.  The more severe my Thiamine deficiency, the worse my headaches would be.  There's a connection between migraines and Wernicke's Encephalopathy.  You don't want to go there!  

Seriously ask your doctor about supplementing Thiamine or getting an IV of Thiamine and the other B vitamins.  They are safe and nontoxic, so no harm in trying.  

Thiamine (and in combination with other B vitamins) have been shown to stop migraines, cluster headaches, etc.

References:

B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9860208/

Dietary intake of thiamine and riboflavin in relation to severe headache or migraine: A cross-sectional survey

https://pubmed.ncbi.nlm.nih.gov/36047917/

Nutrients to Improve Mitochondrial Function to Reduce Brain Energy Deficit and Oxidative Stress in Migraine

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8707228/

[Jujuconnor]

Thanks so much, i see GP this week and mayo lung doctor in 2 weeks.  I can always send a message to mayo - I will let you know.  

2 hours ago, trents said:

The headaches are possibly related to gluten withdrawal. If so, you are three weeks out now and that should subside soon. In general, headaches/migraines are more common in the celiac population than in the general population. I personally suffer from them and have for 20 years beginning soon after diagnosis and I'm careful about avoiding gluten. So, the headaches may not be caused by withdrawal but rather just having celiac disease. They can also be related to MCAS/histamine intolerance which is very common in the celiac population and I tend to think that is true in my case.

I will mention all that you mentioned……TY

[Scott Adams]

Just in case you might be getting traces of gluten in your diet, this article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

[Jujuconnor]

On 10/16/2023 at 12:48 PM, Scott Adams said:

Just in case you might be getting traces of gluten in your diet, this article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

Thank you…..I think I was getting hidden gluten possibly from light coffee creamer. Now we have been only buying fresh or marked gluten free.  This is my 2nd day without any bloating and/or diarrhea without pills since my surgery in March.  Thank you……..