help? This forum might be the last hope I have in my life. Please I beg you

[lasthope2024]

Please take a moment to read this. your testimony might save my life.

I am 21 years old (from a third world country) in my childhood I never had any stomach issues aside from recurring mild gastroenteritis (a few days every couple of months which went away on its own) some times could go six months to a year without any illness at all. 

At age 14 I started having constant, chronic abdominal pain and acid reflux (also constipation and reduced appetite, fatigue, moodiness,etc). I was swiftly tested by doctors over the following 2 months, after a biopsy and blood test, I was confirmed celiac. However, my pain has never stopped, I've never been free.

My mind is not the same, my sleep is not the same, my body has never been the same, I don't think the same way.

What I have done (that I can remember):

tests completely normalised after a year and a half on STRICT unyielding Gluten Free diet. Corroborated by a laboratory that specialises in Gluten blood tests. tests every 6 months have never got high results. These results were corroborated by one of the 5 most important celiac disease doctor and researcher in the world, who happens to live in my country. He seems certain I am not in any way (even indirectly) contaminated.

My house is entirely gluten free, I don't eat anything processed, I don't eat lactose.

The endoscopy revealed partial damage, my small intestine was not completely destroyed by gluten.

Initially tested positive for H.pylori. Successfully treated with antiobiotics and re-tested negative. (6 months after antibiotics)

Normal full abdominal ultra sound

I underwent an esophagogastroduodenoscopy: The presence of gastroesophageal reflux reaching up to the upper third of the esophagus was confirmed,  Thickening of the gastric body mucosal folds was noted.

Numerous blood tests were conducted with no nutrient malabsorption or inflammatory markers present.

Serial parasitological examinations of stool samples were normal, and calprotectin levels were low.

Histamine degradation tests showed a very low probability of histamine intolerance; however, my degradation of histamine is poor. A histamine-free diet for three weeks did not help, and DAO supplementation was also ineffective.

A diet for irritable bowel syndrome without FODMAPs was unsuccessful. Eliminating dairy products did not yield results, and completely avoiding all processed foods while consuming meat, chicken, fish, rice, potatoes, sweet potatoes, and other cooked vegetables along with eggs also had no effect.

Treatment with all commonly used types of antidepressants for chronic functional pain had no effect (e.g., amitriptyline, duloxetine). However, during an 8-month period between 2021 and 2022, clomipramine (50 mg) completely eliminated all my symptoms. It lost its effect overnight without any justification or event that altered my condition in the slightest. I simply woke up in pain. Higher doses and combinations were tried to no avail. 

I also tested negative for SIBO, and was given medication for a fungal infection as a precaution, which was merely a speculation by the doctors.

Contrast-enhanced MRI enterography showed completely normal results.

IMPORTANT

In 2023, during my third colonoscopy, a more thorough examination was conducted, including access to the terminal ileum where ulcers, abscesses, leukocyte presence, and inflammation were found. This led to the consideration of a high probability of a very mild form of Crohn's disease. However, the pathologist in his report also explained the possibility and attributed the cause more to a transient infection or inflammation (an abdominal Doppler ultrasound also revealed inflammation, which seemed even more abnormal). Despite this, the doctors treated me with corticosteroids. A subsequent colonoscopy revealed that the ulcers were no longer present, the inflammation had substantially decreased and was now (apparently) minimal, and there was only a very slight shortening in the villi, which does not necessarily indicate any disease and could simply be the way my villi are.

A capsule video endoscopy also examined my entire digestive tract, finding no abnormalities beyond the ulcers that were later biopsied during the colonoscopy and subsequently treated.

A blood test for food intolerance conducted at a prestigious laboratory in the United States, covering over 600 foods, revealed moderate intolerances only to gluten and some dairy products—two compounds that I do not consume either directly or indirectly.

A comprehensive blood test specifically conducted for markers of inflammatory diseases was carried out at the University of Miami Hospital in the United States. It showed no positive results for any conditions, only indicating a high ASCA IgG level (20.6 EU/mL with a reference value of 11.9 EU/mL).

Years of seeing psychiatrists specialized in pain management and behavioral psychology have yielded no results.

Digestive enzymes and probiotics yielded no results.

Supplementation with functional medicine vitamins (B12, D, C, GABA, etc.) had no effect.

Massages, stretching exercises, acupuncture, ice baths, and sauna sessions also had no effect.

This is all I can remember.

Worth nothing that I only drink mineral water I buy from stores, however I use regular tap to cook, which might be unwise considering my country is not the USA, even so, everyone around me is fine and there are no reported cases of the water being a problem. I live in a big city.

if relevant: suffered from acute otitis infections fairly regularly as a child, antibiotics.

The last 7 years have been hell. I've been forced to leave relationships, miss opportunities, fall back on university, my life is flashing before my eyes.

If you suffered or know anyone with a similar story that had something work for them. Please share. 

 

 

[trents]

Welcome to the forum community, @lasthope2024!

Many of the symptoms you describe seem to have been temporary and transitory. What would you say is your biggest current cause of concern and suffering? May we ask you age?

[knitty kitty]

Welcome to the forum, @lasthope2024,

Blood tests are not reliable measures of vitamin deficiencies.  

Antibiotics are known to cause Thiamine Vitamin B1 deficiency.  

Gastrointestinal Beriberi is caused by Thiamine deficiency.  

"At age 14 I started having constant, chronic abdominal pain and acid reflux (also constipation and reduced appetite, fatigue, moodiness,etc."

All your symptoms here are the same symptoms as Gastrointestinal Beriberi caused by Thiamine deficiency.

"My mind is not the same, my sleep is not the same, my body has never been the same, I don't think the same way."

Thiamine deficiency can produce alterations in brain function, called Wernicke's Encephalopathy.  

Thiamine has antibacterial properties.  Thiamine has analgesic properties.

The Gluten free diet, even if followed strictly, can be nutritionally deficient in essential vitamins and minerals.  There are EIGHT Essential B vitamins, Vitamin C and four fat soluble vitamins. They all work together interdependently.  B12 cannot function properly without sufficient Folate B 9, Pyridoxine B 6, and Thiamine B1.  

"Supplementation with functional medicine vitamins (B12, D, C, GABA, etc.) had no effect."

Doctors are not given sufficient training in nutrition.  They forget to correct the malabsorption caused by Celiac Disease.  They don't recognize the subtle symptoms of Thiamine deficiency outside of alcoholism which presents differently.  Eventually, Thiamine deficiency symptoms, with or without alcohol, overlap and can result in Wernicke's Encephalopathy, 80% of cases are diagnosed postmortem.  

The World Health Organization recommends taking Thiamine and looking for improvement because blood tests for vitamin deficiencies are so unreliable.  

Talk to a nutritionist.  Take a B Complex supplement with all eight essential vitamins and additional high dose Thiamine in the form Benfotiamine (shown to promote intestinal healing) and Allithiamine (Tetrahydrofurfuryl Disulfide for brain function improvement). 

Niacin B3 deficiency can cause GERD and reflux problems.  Another form of Niacin, Tryptophan, is necessary to make melatonin which regulates sleep cycles.  

Riboflavin B 2 makes essential life sustaining enzymes with Thiamine.  

Pyridoxine B6, Cobalamine B12, and Thiamine B1 together have analgesic properties.  

Read my blog for excerpts of my journey through vitamin deficiencies.

Hope this helps!

[lasthope2024]

1 hour ago, knitty kitty said:

Welcome to the forum, @lasthope2024,

Blood tests are not reliable measures of vitamin deficiencies.  

Antibiotics are known to cause Thiamine Vitamin B1 deficiency.  

Gastrointestinal Beriberi is caused by Thiamine deficiency.  

"At age 14 I started having constant, chronic abdominal pain and acid reflux (also constipation and reduced appetite, fatigue, moodiness,etc."

All your symptoms here are the same symptoms as Gastrointestinal Beriberi caused by Thiamine deficiency.

"My mind is not the same, my sleep is not the same, my body has never been the same, I don't think the same way."

Thiamine deficiency can produce alterations in brain function, called Wernicke's Encephalopathy.  

Thiamine has antibacterial properties.  Thiamine has analgesic properties.

The Gluten free diet, even if followed strictly, can be nutritionally deficient in essential vitamins and minerals.  There are EIGHT Essential B vitamins, Vitamin C and four fat soluble vitamins. They all work together interdependently.  B12 cannot function properly without sufficient Folate B 9, Pyridoxine B 6, and Thiamine B1.  

"Supplementation with functional medicine vitamins (B12, D, C, GABA, etc.) had no effect."

Doctors are not given sufficient training in nutrition.  They forget to correct the malabsorption caused by Celiac Disease.  They don't recognize the subtle symptoms of Thiamine deficiency outside of alcoholism which presents differently.  Eventually, Thiamine deficiency symptoms, with or without alcohol, overlap and can result in Wernicke's Encephalopathy, 80% of cases are diagnosed postmortem.  

The World Health Organization recommends taking Thiamine and looking for improvement because blood tests for vitamin deficiencies are so unreliable.  

Talk to a nutritionist.  Take a B Complex supplement with all eight essential vitamins and additional high dose Thiamine in the form Benfotiamine (shown to promote intestinal healing) and Allithiamine (Tetrahydrofurfuryl Disulfide for brain function improvement). 

Niacin B3 deficiency can cause GERD and reflux problems.  Another form of Niacin, Tryptophan, is necessary to make melatonin which regulates sleep cycles.  

Riboflavin B 2 makes essential life sustaining enzymes with Thiamine.  

Pyridoxine B6, Cobalamine B12, and Thiamine B1 together have analgesic properties.  

Read my blog for excerpts of my journey through vitamin deficiencies.

Hope this helps!

I will look into this first thing tomorrow, as when I was first diagnosed I was tested for b12 and I was deficient. This has been incredibly helpful and I thank you. If there's anything else you can think of as you read my story I'd really appreciate it. 

My only concern when taking supplements is if they're deluded/low quality and not really gluten free, are there any brands you recommend? or possibly have it made in pharmacy?

1 hour ago, trents said:

Welcome to the forum community, @lasthope2024!

Many of the symptoms you describe seem to have been temporary and transitory. What would you say is your biggest current cause of concern and suffering? May we ask you age?

Thank you for approving my post, you give me hope. All the questions you ask are answered within the first 2 paragraphs of my post. Any advice is greatly appreciated.

[knitty kitty]

@lasthope2024,

I'm thankful I can help.

An Erythrocyte Transketolase test is a better test for Thiamine deficiency than a blood test.  The Erythrocyte Transketolase test needs to be taken before starting vitamin supplementation.  Otherwise, the vitamins you take will invalidate the results.   

I take Ecological Formulas Allithiamine (Tetrahydrofurfuryl Disulfide TTFD).  I take Life Extension Benfotiamine and B Complex.  I like these brands because they don't use rice flour fillers and they are gluten free.  These are available online.  

Thiamine needs magnesium to make enzymes, so be sure to take a magnesium glycinate or magnesium citrate supplement.  Magnesium Oxide is not a good choice as it is not absorbed well and pulls water into the digestive system, causing diarrhea or relieving constipation.  

Vitamin D needs to be between 75- 100 nmol/L in order to work as it's supposed to.  Vitamin D is frequently low in Celiac Disease.  

Try the Autoimmune Protocol Diet (AIP diet), a Paleo diet that can help inflammation and promote intestinal healing.  Choosing low histamine foods helps further.  Remember to consume healthy fats that contain Omega Threes (olive oil, flaxseed oil, algal oil, fish oil, sunflower seed oil) because our brains are mostly fats. 

Choose low carbohydrate foods.  The more carbohydrates you eat, the more Thiamine is required.  Excess carbohydrates feed SIBO bacteria.  Thiamine helps keep them in check.  Thiamine also helps stop the release of histamine from overly sensitive mast cells.  

Malabsorption due to Celiac Disease can also affect trace minerals like molybdenum, iron, selenium, zinc, copper and iodine.  Calcium should be checked as osteoporosis is common in Celiac Disease, especially if we avoid dairy.  

A discussion with a Nutritionist can be helpful.  

 

References:

Thiamine deficiency disorders: a clinical perspective

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

 

Hiding in Plain Sight: Modern Thiamine Deficiency

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

 

B Vitamins and the Brain: Mechanisms, Dose and Efficacy—A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4772032/

 

The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/

[BluegrassCeliac]

Hi,

  Your situation was similar to mine, but yours sounds more severe. From what I've read and experienced celiacs with IgG can have different symptoms that those with IgA. (I have only IgG like you). It's rare. Most Celiacs have IgA. (95% by some studies). I too had an ulcer and was on PPIs, H2 blockers, etc. They created a severe magnesium deficiency which took 2 years to recover from. HCTZ likewise causes this. Mg deficiency can be severely painful and the only way to stop it is boost your Mg like the others suggested. What type of pain are you experiencing? Anxiety meds can also lower Mg. Mg can interfere with some of them too, so read the instructions.  We are prone to more intensive reactions than regular celiacs: cytokine storms, anaphylactic shock, etc. I've had 6 cytokine storms in the past 5 years. The 2 life threatening ones were caused by prescription medicine with wheat (unlabeled). Have you checked your pills? Are they gluten-free? Cytokine storms can range from mild pain to screaming pain with my skin burning off.

And yes, celiac disease is life changing. I've missed out on many things during my lifetime. It sucks. But there is a bright side. If your immune system is like mine, it is a lot stronger than an average persons. celiac disease has literally saved my life when I contracted some highly drug resistant infections. That also triggered a cytokine storm, but that helped kill the infection. That's its job. Doctors repeatedly don't believe me when I tell they my immune system is different from everyone else's. They complain that I can't have an infection because I don't present normally.  I tell them I'm not normal, but they don't listen. So you're not crazy.  I'd recommend you get off the anxiety meds and try to boost your Mg; but I don't know you medical situation and that's your call. BTW anxiety meds can have terrible side effects. Your call. DM if you want to ask more specific questions.

Oh, check out a book called "Jennifer's Way." It's about celiac disease actress who went through things similar to you. Might help.

Good luck,

B

 

[knitty kitty]

@BluegrassCeliac, welcome to the forum,

Hydrochlorothiazide HCTZ and other diuretics are known to cause Thiamine deficiency.  Anti-anxiety  meds, SSRIs, PPIs and sulfa drugs are known to cause Thiamine deficiency.  

Thiamine and Magnesium work together.  A deficiency in magnesium can hinder how thiamine is utilized.  

Cytokine Storms are ameliorated by high dose Thiamine.  

Do you have a reaction to sulfa drugs?  I have Hypersensitivity Type Four to drugs containing Sulfites.  

 

References:

Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile

https://pubmed.ncbi.nlm.nih.gov/33737877/

[BluegrassCeliac]

Hi,

  Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well.

Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different.

Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it.

I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help.

B

 

[knitty kitty]

@BluegrassCeliac,

I'm agreeing.  It's a good thing taking magnesium. And B vitamins.

Magnesium and Thiamine work together.  If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well.  If you take Magnesium, but not Thiamine, magnesium won't work as well by itself.

Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug.  So are proton pump inhibitors PPIs, and SSRIs.

High dose Thiamine is used to resolve cytokine storms.  High dose Thiamine was used in patients having cytokine storms in Covid infections.  Magnesium supplementation also improves cytokine storms, and was also used during Covid.

How's your Vitamin D?

References:

Thiamine and magnesium deficiencies: keys to disease

https://pubmed.ncbi.nlm.nih.gov/25542071/

Hiding in Plain Sight: Modern Thiamine Deficiency

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

The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/

High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/

Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile

https://pubmed.ncbi.nlm.nih.gov/33737877/

Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/

Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/

Sulfonamide Hypersensitivity

https://pubmed.ncbi.nlm.nih.gov/31495421/