Pain in the right side of abdomen

[Heatherisle]

Just an update on my daughter. She is still in hospital and getting quite depressed about everything. She had a CT scan of head and chest to rule out stroke in view of her symptoms. Thankfully there is no evidence of that so they now want to do an MRI to rule out MS so this is freaking her out and it’s not doing me much good either!!!They’re also going to do further blood tests to check vitamin levels. My husband and I are trying to reassure her the best we can that hopefully it’s just her body’s reaction to having the Vitamin B medication and it’s affecting her nervous system etc. Think the tingling has subsided but still having some lower back and pelvic pain and some leg pain. Thanks for reading and my apologies if I sound paranoid.

[Theresa2407]

Have they checked her Adrenal glands.

 

 

[Heatherisle]

Hi 
There’s been no mention of her adrenal glands as far as I know

[knitty kitty]

@Heatherisle,

You have good reason to worry.  

Ask the doctors to do an Erythrocyte Transketolace Activity Assay to test for Thiamine B1 deficiency.  Thiamine deficiency is frequently found in B12 deficiency.  Deficiencies in all the B vitamins are common with malabsorption due to Celiac disease.  Thiamine can run out in as little as three days.  

Thiamine deficiency symptoms can be mistaken for other diseases such as MS and Guillian-Barre Syndrome.  Thiamine deficiency symptoms include pain in legs and abdominal pain as well as depression and gastrointestinal symptoms.

Thiamine B1, Pyridoxine B6 and Cobalamine B 12 together relieve nerve pain.

References and Interesting Reading:

Wernicke’s encephalopathy mimicking multiple sclerosis in a young female patient post-bariatric gastric sleeve surgery

https://pmc.ncbi.nlm.nih.gov/articles/PMC8462913/

Thiamine Deficiency Masquerading As Guillain-Barré Syndrome

https://pmc.ncbi.nlm.nih.gov/articles/PMC11872742/

Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke’s Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature

https://pmc.ncbi.nlm.nih.gov/articles/PMC6429982/

Is there a Link between Vitamin B and Multiple Sclerosis?

https://pubmed.ncbi.nlm.nih.gov/28875857/

Thiamine Deficiency and Neurological Symptoms in Patients with Hematological Cancer Receiving Chemotherapy: A Retrospective Analysis

https://pmc.ncbi.nlm.nih.gov/articles/PMC8559079/

The Effects of Vitamin B in Depression

https://pubmed.ncbi.nlm.nih.gov/27655070/

Thiamine Deficiency Neuropathy in a Patient with Malnutrition due to Melancholic Depression

https://pmc.ncbi.nlm.nih.gov/articles/PMC10942818/

Myopathy in thiamine deficiency: analysis of a case

https://pubmed.ncbi.nlm.nih.gov/16920153/

Neurologic complications of thiamine (B1) deficiency following bariatric surgery in adolescents

https://pubmed.ncbi.nlm.nih.gov/38705013/

B Vitamins in the nervous system: Current knowledge of the biochemical modes of action and synergies of thiamine, pyridoxine, and cobalamin

https://pubmed.ncbi.nlm.nih.gov/31490017/

Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults

https://pmc.ncbi.nlm.nih.gov/articles/PMC6459027/

B Vitamin Deficiencies and Associated Neuropathies

https://pmc.ncbi.nlm.nih.gov/articles/PMC12855320/

Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura

https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/

Update on Safety Profiles of Vitamins B1, B6, and B12: A Narrative Review

https://pmc.ncbi.nlm.nih.gov/articles/PMC7764703/

 

[Scott Adams]

I don't think we need so many references--I doubt anyone will be going through them all. Please curtail these in future posts!

PS - 2-3 should be fine.

[Scott Adams]

I may have already been mentioned here, but it may make sense to ask to have her thyroid levels checked, as thyroid issues are common with celiac disease:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/thyroid-pancreatic-disorders-and-celiac-disease/

[Heatherisle]

Think her thyroid levels were fine, she’s had various blood tests since being in hospital. Been started on B12 injections for now instead of the oral medication and more bloods taken to check for pernicious anaemia

[Heatherisle]

Hi 

Sorry not been on for a while. My daughter had a recent hospital stay as went to GP with slight blurred vision, lower back pain and tingling in hands and feet, slight balance problems. GP wanted to rule out stroke. Had recently started Vit B12 medication as blood test showed really low level of 30, folate was 2.2. Was admitted for 4 days, various tests including head CT ruled out stroke but was commenced on B12 injections instead of tablets. Had follow up MRI 5 weeks ago and she is now being referred to neurology as possible transient lesion seen on frontal lobe, so something else to worry about. Hoping it’s all connected to her B12 levels. Her tingling seemed to settle after getting injections 3 times/ week for two weeks and has just had her 2nd monthly dose but a week late and felt the tingling coming back just before that.Just wondering if anyone else has experienced this. 

Thanks for reading and sorry to be a pain!!!!

[knitty kitty]

@Heatherisle,

I would feel much less worried if you would insist that the doctors administer high dose thiamine hydrochloride (500mg x 3 daily) for several days, with a banana bag (all eight B vitamins, riboflavin makes it yellow like bananas).  Electrolytes may become unbalanced, so monitoring is needed as well.  Just to rule out Thiamine deficiency, high dose thiamine should be administered for several days.  If no health improvement, look for something else.

The symptoms your daughter is showing are seen in Wernickes Encephalopathy caused by Thiamine deficiency.  White spots in the brain including on the frontal lobe are seen in Wernickes Encephalopathy.  Blurred vision, balance problems, changed gait (wider stance to compensate for imbalance), tingling in hands and feet, ascending neuropathy, lower back pain, kidney pain, abdominal pain are all symptoms I have experienced when I had Wernickes.  The damage becomes permanent if not corrected quickly.  Korsakoff Syndrome follows with brain damage that cannot be reversed, and death following.  

Doctors are not trained in Nutrition.  Doctors are taught Wernickes Encephalopathy only happens in Alcoholism.  My doctors did not recognize Wernickes Encephalopathy because I did not drink alcohol.  If it walks like a duck...

Doctors do not realize that Malabsorption from Celiac Disease can result in severe nutritional deficiency diseases, including Wernickes.  Malabsorption of Celiac Disease affects all the essential nutrients, vitamins and minerals, our bodies need to function properly.  It's rare to have a deficiency in just one vitamin.  B12 Deficiency and Thiamine deficiency go hand in hand.  

I had symptoms of deficiencies in many vitamins and minerals because my Celiac Disease was still undiagnosed at that time.  They laughed when I asked to be checked for Celiac Disease.  I was overweight (high calorie malnutrition).  I didn't match their " in the box" thinking.  I didn't match their concept of the wasting away, skin and bones stereotype of Celiac Disease.  My doctors wrote me off as "depressed". 

I could feel myself dying.  I trusted what I learned at university about how vitamins work inside the body.  I recognized the symptoms of Wernickes and other nutritional deficiency diseases.  At home, I took 500 mg over the counter thiamine hydrochloride and had health improvement within twenty minutes.  I continued supplementing for months, with thiamine and B vitamins and electrolytes.  I continued to have health improvements.  I did suffer some permanent brain damage.  I have permanent vision problems and optic nerve damage.  Computer screens cause migraines.  I struggle through them to help others.  

Ask for Thiamine and an Erythrocyte Transketolace Activity Assay.  This test is more accurate than a blood test for Thiamine level, but both tests take time, during which time permanent damage can be done.  The World Health Organization recommends thiamine administration before test results come back in order to prevent permanent damage.  

Trying thiamine hydrochloride is simple and cheap and safe and nontoxic.  If high dose thiamine doesn't work, there's no harm done.  Try thiamine supplementation if only to rule out Thiamine deficiency....while there's still time.

References:

Thiamine Deficiency and Brain Injury: Neuroanatomical Changes in the Wernicke-Korsakoff Syndrome

https://pmc.ncbi.nlm.nih.gov/articles/PMC12535404/

Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura

https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/

Please have ears to hear.

[Scott Adams]

4 hours ago, Heatherisle said:

Hi 

Sorry not been on for a while. My daughter had a recent hospital stay as went to GP with slight blurred vision, lower back pain and tingling in hands and feet, slight balance problems. GP wanted to rule out stroke. Had recently started Vit B12 medication as blood test showed really low level of 30, folate was 2.2. Was admitted for 4 days, various tests including head CT ruled out stroke but was commenced on B12 injections instead of tablets. Had follow up MRI 5 weeks ago and she is now being referred to neurology as possible transient lesion seen on frontal lobe, so something else to worry about. Hoping it’s all connected to her B12 levels. Her tingling seemed to settle after getting injections 3 times/ week for two weeks and has just had her 2nd monthly dose but a week late and felt the tingling coming back just before that.Just wondering if anyone else has experienced this. 

Thanks for reading and sorry to be a pain!!!!

Celiac disease can have neurological associations, but the better-described ones include gluten ataxia, peripheral neuropathy, headaches or migraine, seizures, cognitive symptoms, and, rarely, cerebral calcifications or white-matter changes. Some studies and case reports describe brain white-matter lesions in people with celiac disease, but these are not specific to celiac disease and can have many other explanations.

A frontal lobe lesion could mean many different things depending on the exact wording of the report: a white-matter spot, inflammation, demyelination, a small old stroke, migraine-related change, infection, trauma, vascular change, seizure-related change, tumor-like lesion, artifact, or something that resolved on repeat imaging. The word “transient” usually means it changed or disappeared, which can happen with some inflammatory, seizure-related, migraine-related, vascular, or imaging-artifact situations. 

Hopefully they will find nothing serious.