10 year old with sudden onset, gastroparesis, weight loss, no improvement after 6 weeks on gluten-free diet. AIP? Supplements? Help!

[MominWA]

I am really struggling watching my child not recover with the gluten-free diet, and would appreciate any input or advice. My 10 year old son had a sudden onset of symptoms with what we think might have been a GI virus (although he had had frequent illnesses the 6 months prior, which might have been because of Celiac). He woke up one morning with nausea, vomiting, dizziness, and pain in the lower right quadrant of his abdomen (right where his appendix is). It took 5 weeks to get a diagnosis via scope (his TTG IGA was only 5, measured twice, with 1-3 being normal and 4-10 being a faint positive). He was put on laxatives during this time and diagnosed with gastroparesis. He is now on Reglan, and off laxatives, and is having normal consistency stools once a day. The vomiting has stopped, I think because the Reglan is moving food through him. We almost at week 6 gluten-free- and I feel like we are being really strict and careful with it. About 4 weeks into the gluten-free diet he had lost more weight, so they sent him to the hospital for tube feeding (beyond the stomach). We are now home, and supplementing his diet with the Kate Farms tube feeding formula 2 times a day (no tube, just drinking it). It is a pea protein/ rice peptide drink that is supposed to be good for celiacs. His dizziness, fatigue, nausea, and abdominal pain are the same as before he was diagnosed. We do not have good GI support here, I am trying to get  a GI consult from a pediatric celiac center in our state. His PCP is great, but not an expert on celiac. I had her test for some of the common vitamin deficiencies (B12, B6, Iron w/Ferritin,Copper, E, D 25 hydroxy, A, Phosphorus, Zinc, Folate, Magnesium, and later B1). He was only low on Copper, but was close to the low threshold on D. I had already started him on a B complex and D vitamins. His B6 was high (168, high threshold of 68). Could the supplements I was giving him before the testing have created a falsely high reading on B vitamins and D? Anything else I should have checked? I’ve read about Choline on here, maybe test for that? We have worked with a naturopath as well, he is taking glutamine, probiotics, and vitamin D. We tried giving him copper supplements, but they made him vomit and so nauseous he couldn’t eat for 12 hours. His stool is light in color, but does not appear “greasy” or extra smelly. He has also had trouble with dizziness and reading since this started (he went to an opthamologist and she said his eyes are fine).

 

After our last stint at the hospital, I reduced his diet to rice, meat, vegetables, light dairy, fruit- no nightshades, nuts, seeds, or other grains. We did that for 10 days with no change in symptoms. He had his dissacharides tested, and lactase was in the normal range, which means he can have some dairy, right? He really wants to add back in tofu, beans, gluten-free bread products. I don’t want to restrict his diet for no reason, what should I do? We’ve been keeping a food diary and are not seeing any correlation between certain foods and symptoms. His symptoms have been stable throughout the entire sickness- a 3 out of 10 pain in the abdomen, right where his appendix is (made worse by eating or movement), nausea, dizziness, fatigue. Any suggestions on diet? Enzymes? We are going to do a GI Map type of test soon through the naturopath. He did have amoxicillin for the first time 3 weeks before the sudden onset of symptoms. He has had a brain MRI, CT scan, ultrasound to visualize appendix, barium contrast xray of small intestine, gastric emptying study (he was 2-3 times normal, before Reglan), colonoscopy and endoscopy, genetic test (he has one of the genes), and many other blood/urine tests. He’s been tested for thyroid, has normal glucose, normal ANA and RA tests.

 

[trents]

Welcome to the forum, MominWA!

Maybe I missed it in your lengthy narrative but has your son had an endoscopy with biopsy of the small bowel villous lining to confirm celiac disease? That is normally done to confirm celiac disease unless the blood antibody levels are extremely high and in his case that certainly was not true. His antibody score is very nominally positive. And he also does not seem to be improving on a gluten free diet. So, unless there was a scoping and biopsy that demonstrated there was villous atrophy, I would question whether or not celiac disease is the issue. Were any other celiac antibody tests performed other than the tTG-IGA? I wish more docs would order a full celiac panel instead of just the tTG-IGA, especially with children since their immune systems are still immature. Since your PCP is not a celiac expert you might suggest this be done.

Problems with dairy can be caused by lactose intolerance but not always, even though that is the assumption. The dairy protein casein is similar in structure to gluten and causes the same reaction as gluten in a certain percentage of celiacs. Same with the oat protein, avenin. So, if he is still consuming those two foods, you might consider a trial elimination of them.

Testing serum levels of vitamins can be misleading because high amounts in the blood does not necessarily equate with adequate cellular assimilation. Sometimes symptoms are a better barometer than serum concentration when it comes to nutritional deficiencies. So, yes, supplementation can mask deficiencies that still exist when you are going strictly by serum concentrations. We have some forum moderators that have medical lab backgrounds who can comment better on this question so I hope they will chime in.

[Wheatwacked]

Side effects of Reglan: Drowsiness, dizziness, tiredness, trouble sleeping, agitation, headache,heartburn, muscle spasms/uncontrolled muscle movements (such as twisting neck, arching back), Parkinson-like symptoms, Tardiff Dyskinesia and diarrhea. This product may contain inactive ingredients, which can cause allergic reactions or other problems.  this medication is usually taken for 2 to 8 weeks until your gut is working well. 

He may be reacting to the Reglan side effects.  Is Reglan gluten free?  Especially if it hasn't helped since the beginning. Talk to doctor about discontinuing because if it is not helping why use it and it does have side effects similar to your sons symptoms.

 

 

12 hours ago, MominWA said:

I reduced his diet to rice, meat, vegetables, light dairy, fruit- no nightshades, nuts, seeds, or other grains.

Try eating only from this list: 

Gluten Contamination Elimination Diet

 

It does take time to heal but usually some symptoms start to improve in days.  Definately with the tube feedings Choline is an issue.  Fatty stools? Without eggs and liver and steak or capsules it seems impossible.  Often mistaken for gallstones.

Quote

Choline is an essential component of all cell membranes, and has been considered a required dietary nutrient since 1998 by the US Institute of Medicine's Food and Nutrition Board. Choline is necessary for DNA repair, mediated by its role as a methyl donor. It also serves as the precursor for the neurotransmitter acetylcholine. Evidence has accumulated that hepatic steatosis, which occurs during parenteral nutrition therapy, develops as a result of choline deficiency because endogenous production of choline from parenterally infused methionine is deficient. In addition, memory deficits and skeletal muscle abnormalities have been described, and choline deficiency appears to activate cellular apoptosis. Plasma-free choline concentration may be measured by high-pressure liquid chromatography and gas chromatography–mass spectrometry.Recently, a chemiluminescent assay was developed that uses automated hospital equipment. https://www.gastrojournal.org/article/S0016-5085(09)01444-9/fulltext?referrer=https%3A%2F%2Fpubmed.ncbi.nlm.nih.gov%2F

 

[MominWA]

18 hours ago, trents said:

Were any other celiac antibody tests performed other than the tTG-IGA? I wish more docs would order a full celiac panel instead of just the tTG-IGA, especially with children since their immune systems are still immature.

Thank you for your reply. They did do a full panel for the antibodies- total IGA (191, range 52-221), AG Ab IGA (6, range 0-19), and Ab IGG (16, range 0-19) were normal. They confirmed with biopsy- here is the biopsy report:

"duodenal mucosa with intraepithelial lymphocytosis and villous blunting." and "The histologic findings in the duodenal biopsies show a malabsorptive pattern and are compatible with celiac sprue in the
appropriate clinical context. Some villi remain normal, but others are quite shortened"

I was still concerned about the diagnosis, since in the "real life with Celiac Disease" that some other diseases could present with the same villous damage and low positive ttg IGA values (like CVID), which is why I asked for the genetic test. He has one of the genes (DQ2), which the lab said gave him a 1 in 35 chance of Celiac Disease, which makes me more confident in the diagnosis. I was also concerned that there is something else going on, not just the Celiac. His symptoms have been so consistent throughout the last almost three months- the only thing that has helped is the Reglan. Dietary changes and supplements have not made a difference. Thank you for the information on the lactose protein, that is helpful.

[MominWA]

8 hours ago, Wheatwacked said:

Side effects of Reglan: Drowsiness, dizziness, tiredness, trouble sleeping, agitation, headache,heartburn, muscle spasms/uncontrolled muscle movements (such as twisting neck, arching back), Parkinson-like symptoms, Tardiff Dyskinesia and diarrhea. This product may contain inactive ingredients, which can cause allergic reactions or other problems.  this medication is usually taken for 2 to 8 weeks until your gut is working well. 

He may be reacting to the Reglan side effects.  Is Reglan gluten free?  Especially if it hasn't helped since the beginning. Talk to doctor about discontinuing because if it is not helping why use it and it does have side effects similar to your sons symptoms.

 

I was worried about the Reglan side effects. Reglan is gluten-free. We tried stopping it after two weeks (what the hospitalist recommended) and stomach motility decreased again- he became constipated and started vomiting again. We restarted and food started moving through him again. His PCP has recommended weaning him off it- we are going down to half dose (5 mg/day). He had the dizziness before taking the Reglan, and has not had any of the other side effects, although I don't know about the inactive ingredients and allergic reations- it is on the gluten free medication list online.

 

We have not seen ANY improvement in any symptoms, 6 weeks gluten-free.

 

His stools are not fatty, just pale, which I am thinking might be a vitamin deficiency? I like the idea of that diet- avoid processed gluten-free foods but have more variety. He has not shown any reaction to any foods, but he is already not feeling well, so it might be hard to tell.

 

Thank you for responding, I appreciate any information that might help us move toward him feeling better.

[trents]

Thanks for the additional information. tTG-IGA is 95% specific for celiac disease. The biopsy is confirmation. The chances of it being something other than celiac are pretty slim. But it does seem like something else might be going on in addition to celiac disease if he is eating truly gluten free. Have you checked all his meds, supplements and vitamins for being gluten free? Does he still eat out. Studies have shown that eating out is the biggest underminer of being gluten free. It isn't just what you order at restaurants that matters but how it is prepared and handled back in the kitchen. There is typically significant cross contamination of naturally gluten free food caused by carelessness of the restaurant kitchen staff who are cooking the gluten free stuff on the same grill, in the same cookware as gluten stuff and handling and cutting it with the same utensils they use for gluten stuff.

I misspoke above about dairy. Lactose intolerance does not cause casein intolerance. I don't know why I said that. Brain fart I guess. Lactose is the sugar component in milk. Casein is one of the protein components in milk.

[trents]

Has he had a colonoscopy?

How much fiber is he getting daily? Adult recommendation is 25-30g per day. Kids aren't know for liking high fiber foods.

Is he physically active?

[MominWA]

2 minutes ago, trents said:

Has he had a colonoscopy?

How much fiber is he getting daily? Adult recommendation is 25-30g per day. Kids aren't know for liking high fiber foods.

Is he physically active?

I'm not totally sure on the fiber- I've been using "my fitness pal" to track calories and meals- looks like he's getting about 2/3 the recommended amount for his age,  He was extremely active before the illness- swim team, soccer, cross country, generally bouncing around the house. Movement increases the abdominal pain, he can only walk a couple blocks now. It is the saddest summer ever.

He did have a colonoscopy, everything was normal. We are not eating out, at all. I cleaned out all the drawers, ran everything through the dishwasher, and we are no longer cooking with any gluten products. I just double checked the supplements, all gluten-free. Thank you again for responding.

[trents]

I might suggest trying a psyllium husk fiber product. Costco's Kirkland Signature Sugar-free Orange flavor brand is gluten free. I use it. Also, magnesium deficiency can cause constipation. But there are many forms of magnesium supplements and they aren't created equal.

Believe me, your comment about the saddest summer ever is something every parent can relate to. When your kids aren't well, it's a real stressor. We'd rather take it on ourselves.

Edited July 24, 2023 by trents

[trents]

What can cause pale stools: https://www.medicalnewstoday.com/articles/324582#causes

Has your son had his liver ezymes checked and has he been checked for gallbladder disease? Elevated liver enzymes was what put me on the road to an eventual celiac diagnosis. Took 13 years, however from the onset of the elevated liver enzymes.

Concerning the abdominal pain in the area of the appendix that is made worse by eating or movement. What about scar tissue or strictures in that area that might be partially pinching off the bowel?

[Wheatwacked]

23 hours ago, MominWA said:

He is now on Reglan, and off laxatives, and is having normal consistency stools once a day.

23 hours ago, MominWA said:

we think might have been a GI virus (although he had had frequent illnesses

A bolus boost of vitamin D, the largest you can get for him.  Maybe some of those 50,000 IU shots from the doctor so it bypasses ingestion.   He's at 29 ng/ml, according to "close to the low threshold on D".  Homeostasis for D is 80 ng/ml.  The range is 29 - 120 ng/ml.  Raising it can only help him and according to this report may be the answer.  With the malabsorption from Celiac he is susceptible to more infections, that puts more load on vitamin D, using up what little there is and something gave.

You are doing a great job!

Note the phrase "idiopathic".  Like your son, they have no clue what caused it.

Quote

 

Role of Vitamin D on Gastric Motility in Patients with Gastroparesis

Fifty nine consecutive patients with idiopathic gastroparesis from IEN were studied. Symptom scores, gastric emptying time, vitamin levels including vitamin D were measured. Vitamin D levels were correlated with gastric emptying time.

Conclusions: Vitamin D levels correlate with efficiency of gastric emptying in patients with GP from IEN, and correction of vitamin D deficiency in these patients will improve their gastrointestinal motility and symptoms related to it.

 

 

[knitty kitty]

@MominWA, welcome to the forum!

Speaking from personal experience, your son's symptoms sound like Gastrointestinal Beriberi.  

Gastrointestinal Beriberi is caused by a deficiency in Thiamine Vitamin B 1.  Abdominal pain, vomiting, gastroparesis, constipation (or diarrhea), fatigue, and dizziness are symptoms.

Thiamine deficiency is often precipitated by an infection, especially if one is already low in Thiamine due to malabsorption as occurs in Celiac.  Some antibiotics can further complicate thiamine status because the antibiotics can block the function of Thiamine.  

The prescription medications my doctors gave only covered up the symptoms but did not address the actual problem of Thiamine deficiency.  Doctors are trained to prescribe pharmaceuticals.  They are given very little education about nutrition and the importance of vitamins.  My doctors did not recognize Thiamine deficiency outside of alcoholism. 

My symptoms only resolved after taking high dose Thiamine 500 mg or more of Thiamine Hydrochloride.  I also took Benfotiamine and Allithiamine which are really powerful forms.  Benfotiamine has been scientifically shown to improve gastrointestinal symptoms.  

Please search on National Institute of Health PubMed for gastrointestinal beriberi.

Dr. Derrick Lonsdale and Dr. Chandler Marrs have done much research on Thiamine deficiency.

https://www.hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/

P.S. Yes, taking vitamins will be reflected in blood work done to check for vitamin deficiencies.  Blood levels don't reflect how much of the vitamin is inside cells functioning.  Blood levels for vitamins can reflect how much of that vitamin was consumed in the prior 24 - 48 hours.

Edited July 24, 2023 by knitty kitty
Added post script

[MominWA]

On 7/24/2023 at 10:54 AM, Wheatwacked said:

A bolus boost of vitamin D, the largest you can get for him.  Maybe some of those 50,000 IU shots from the doctor so it bypasses ingestion.   He's at 29 ng/ml, according to "close to the low threshold on D".  Homeostasis for D is 80 ng/ml.  The range is 29 - 120 ng/ml.  Raising it can only help him and according to this report may be the answer.  With the malabsorption from Celiac he is susceptible to more infections, that puts more load on vitamin D, using up what little there is and something gave.

You are doing a great job!

Note the phrase "idiopathic".  Like your son, they have no clue what caused it.

 

I had his doctor put in another test for Vitamin D- we have been supplementing since we found out it was low. It is now at 34, so it has gone up, but not by much. I will talk to Dr about getting a large dose.

[MominWA]

On 7/24/2023 at 10:33 AM, trents said:

What can cause pale stools: https://www.medicalnewstoday.com/articles/324582#causes

Has your son had his liver ezymes checked and has he been checked for gallbladder disease? Elevated liver enzymes was what put me on the road to an eventual celiac diagnosis. Took 13 years, however from the onset of the elevated liver enzymes.

Concerning the abdominal pain in the area of the appendix that is made worse by eating or movement. What about scar tissue or strictures in that area that might be partially pinching off the bowel?

He did have an elevated AST on one test at the hospital, and I read that the Reglan can cause liver issues. We just ran a liver panel again and everything came back in the normal range. However, he has had protein in his urine for the last three urine tests, and this last one had "amorphous crystals" in his urine. His stools are back to normal color today.  How do they test for gallbladder disease? His pain is in the lower right quadrant of the abdomen, rather than the upper right quadrant that I am reading is associated with gallbladder. I believe the xray with contrast was to look for scarring or pinching of the intestine (and SMAS), this was their report from that test "The preliminary scout films demonstrate an unremarkable bowel gas pattern with the tip of a feeding tube in the jejunum. The esophagus is visualized with a rapid sequence filming and demonstrates normal peristaltic movement. The esophagus empties into the stomach without delay. No reflux was demonstrated today. There is no hiatal hernia noted. The duodenal C loop is well visualized with no evidence for SMA syndrome. All remaining segments of the small intestines demonstrate a normal caliber and maintain a normal mucosal appearance. No abnormal dilated bowel loops are identified. No strictures or ulcerations are seen. There is no evidence of intrinsic or extrinsic mass. No sinus or fistulas tracts are noted. Contrast is found to opacify the colon with a small bowel transit time of approximately 2 hours."

[MominWA]

On 7/24/2023 at 1:29 PM, knitty kitty said:

@MominWA, welcome to the forum!

Speaking from personal experience, your son's symptoms sound like Gastrointestinal Beriberi.  

Gastrointestinal Beriberi is caused by a deficiency in Thiamine Vitamin B 1.  Abdominal pain, vomiting, gastroparesis, constipation (or diarrhea), fatigue, and dizziness are symptoms.

 

Thank you for your reply. I read about the symptoms of GI Beriberi and thought that might be the solution- it really describes all his symptoms, so we had him tested for B1 on 7/1, which was about 2 weeks after I had stopped giving him B vitamins (after I got the high B6 results back). His B1 was 105. Maybe I should ask to get it tested again?

Maybe it is an issue with the Vagus nerve?

[trents]

What are they saying about the protein in the urine and amorphous crystals? Protein in the urine can and usually is I believe, suggestive of kidney dysfunction.

The first step of diagnosing gallbladder disease is an ultra scan to visualize any stones that might be blocking the bile duct. The second step is something called a HIDA scan which is a nuclear medicine procedure.

[knitty kitty]

4 hours ago, MominWA said:

Thank you for your reply. I read about the symptoms of GI Beriberi and thought that might be the solution- it really describes all his symptoms, so we had him tested for B1 on 7/1, which was about 2 weeks after I had stopped giving him B vitamins (after I got the high B6 results back). His B1 was 105. Maybe I should ask to get it tested again?

Maybe it is an issue with the Vagus nerve?

One should be off of vitamin and mineral supplements for eight weeks before testing blood levels.

Yes, the vitamins you gave your son could be reflected in his blood tests.  A 20% increase in dietary thiamine can cause an 80% increase in the brain and symptoms temporarily improve.  High doses of Thiamine is needed to repair and replace the mitochondria damaged by Thiamine deficiency.

The Erythrocyte transketolase test is more accurate than blood levels.  This test examines how well thiamine-based enzymes are working.

Yes, Thiamine deficiency can affect the Vagus Nerve.  Difficulty swallowing, hoarse voice, vertigo, deafness, heart fibrillation (skipping beats), gastrointestinal symptoms, and more can be caused by Thiamine deficiency.

Because the effects of Thiamine deficiency can be life threatening and permanent, promptly correcting the deficiency is important. 

A field test for Thiamine deficiency is seeing if the person can rise from a squat.  I could not.  

The World Health Organization says a Thiamine deficiency can be made if health improvements are seen after administering high dose Thiamine for several days.  If improvement is seen Thiamine supplementation should be continued for months to years. 

There is a Refeeding Syndrome that can occur in severely deficient patients like your son.  Glucose is required to be administered at the same time.  Your doctor can administer Thiamine Hydrochloride through an IV in a clinical setting, prepared for Refeeding Syndrome should it occur.  

I took over the counter thiamine hydrochloride supplements and had improvement within the hour.  Since Thiamine is harmless and nontoxic, there is no reason not to try high dose Thiamine, if just to rule it out.

[Wheatwacked]

Has his B6 gone down any?  That's the one test that sticks out abnormal.

     Vitamin B6 Fact Sheet for Health Professionals High intakes of vitamin B6 from food sources have not been reported to cause adverse effects. However, chronic administration of 1–6 g oral pyridoxine per day for 12–40 months can cause severe and progressive sensory neuropathy

Could one of his meds in the recent past have caused the increase?

     Vitamin B6 and Hypophosphatasia The reason the Vitamin B6 levels are so high is because the enzyme Alkaline Phosphatase (ALP) is responsible for regulating vitamin B6 intracellularly in the blood. In HPP patients our bodies do not make enough ALP, and therefore we cannot regulate Vitamin B6 in our blood like a normal person

THE IMPORTANCE OF VITAMINS FOR THE VAGUS NERVE

A 10 year old needs to ingest 375 mg of choline a day. And when it comes to choline, green peas reign supreme, with over 45 mg per one cup cooked.  That means 9 cups of peas a day for the mininmum RDA.  Unless Kates Farm superconcentrates the choline, he is not getting enough.  Some steak and eggs if the Reglan is working or supplements.

     Choline is essential for acytyl choline. The parasympathetic nervous system (via the vagus nerve) uses Acetylcholine as its primary postganglionic neurotransmitter. Acetylcholine Biosynthesis and Metabolism

  Choline Fact Sheet for Health Professionals

Homecysteine is the toxic product of protein metabolism.  It causes inflammation.  There are three separate pathways to convert it back to methionine.  1) Choline, 2) B6 and 3) B12 with Folate. Do you have homocysteine plasma levels?  Might shed light.

Taurine is an antioxidant amino acid.  Sick people need more than we make, so it is considered a "conditional amino acid.  It is also involved in the homocysteine cycle.

When my son was diagnosed celiac disease at weaning the doctor put him on Nutramegen.  It is the best hypoallergenic baby formula.  Even has enough choline per serving, which most feeding formulas do not.  Maybe the Nutramegen 3 would work.  The Kates Farm website does not list vitamins and mineral content.  Perhaps the can label does?

Gastric Dysmotility and Low Serum Vitamin D Levels in Patients with Gastroparesis  This is the complete study version of the abstract I posted the link to previously. A good read.  Gives test results.

4 hours ago, knitty kitty said:

The World Health Organization says a Thiamine deficiency can be made if health improvements are seen after administering high dose Thiamine for several days.

So,

1) keep up the D. Ekwaru et al 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. 

2) Try the B1, won't hurt, might help.

3) Supplement Choline. Won't hurt might help.

[Wheatwacked]

You can use the National Nutrition Database to create a spreadsheet to track nutrition intake.  

Here is a sample: http://nutrientlog.doodlesnotes.net/

[Wheatwacked]

This caught my eye:

We hypothesize that the enhanced dopamine system and reduced acetylcholine (Ach) in gastric tissues might contribute to the delayed gastric emptying observed in PD.  The role of the vagal pathway and gastric dopamine in the gastroparesis of rats

[MominWA]

21 hours ago, knitty kitty said:

One should be off of vitamin and mineral supplements for eight weeks before testing blood levels.

Yes, the vitamins you gave your son could be reflected in his blood tests.  A 20% increase in dietary thiamine can cause an 80% increase in the brain and symptoms temporarily improve.  High doses of Thiamine is needed to repair and replace the mitochondria damaged by Thiamine deficiency.

there is no reason not to try high dose Thiamine, if just to rule it out.

Thank you. I picked up some gluten-free Thiamine HCL supplements this morning (and Choline), he just had his first dose. I had him try the squat test last night and he passed. I wish the GI doctors told me not to start supplements before getting him tested for vitamins. Even our naturopath didn't mention that.

[MominWA]

16 hours ago, Wheatwacked said:

Has his B6 gone down any?  That's the one test that sticks out abnormal.

     Vitamin B6 Fact Sheet for Health Professionals High intakes of vitamin B6 from food sources have not been reported to cause adverse effects. However, chronic administration of 1–6 g oral pyridoxine per day for 12–40 months can cause severe and progressive sensory neuropathy

Could one of his meds in the recent past have caused the increase?

     Vitamin B6 and Hypophosphatasia The reason the Vitamin B6 levels are so high is because the enzyme Alkaline Phosphatase (ALP) is responsible for regulating vitamin B6 intracellularly in the blood. In HPP patients our bodies do not make enough ALP, and therefore we cannot regulate Vitamin B6 in our blood like a normal person

THE IMPORTANCE OF VITAMINS FOR THE VAGUS NERVE

A 10 year old needs to ingest 375 mg of choline a day. And when it comes to choline, green peas reign supreme, with over 45 mg per one cup cooked.  That means 9 cups of peas a day for the mininmum RDA.  Unless Kates Farm superconcentrates the choline, he is not getting enough.  Some steak and eggs if the Reglan is working or supplements.

     Choline is essential for acytyl choline. The parasympathetic nervous system (via the vagus nerve) uses Acetylcholine as its primary postganglionic neurotransmitter. Acetylcholine Biosynthesis and Metabolism

  Choline Fact Sheet for Health Professionals

Homecysteine is the toxic product of protein metabolism.  It causes inflammation.  There are three separate pathways to convert it back to methionine.  1) Choline, 2) B6 and 3) B12 with Folate. Do you have homocysteine plasma levels?  Might shed light.

Taurine is an antioxidant amino acid.  Sick people need more than we make, so it is considered a "conditional amino acid.  It is also involved in the homocysteine cycle.

When my son was diagnosed celiac disease at weaning the doctor put him on Nutramegen.  It is the best hypoallergenic baby formula.  Even has enough choline per serving, which most feeding formulas do not.  Maybe the Nutramegen 3 would work.  The Kates Farm website does not list vitamins and mineral content.  Perhaps the can label does?

Gastric Dysmotility and Low Serum Vitamin D Levels in Patients with Gastroparesis  This is the complete study version of the abstract I posted the link to previously. A good read.  Gives test results.

So,

1) keep up the D. Ekwaru et al 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. 

2) Try the B1, won't hurt, might help.

3) Supplement Choline. Won't hurt might help.

We tested the B6 again this week, but haven't gotten the results back yet. I gave him liquid B vitamins for about a week (ending on the day he was tested the first time), not sure if that is long enough for such a high reading, but I am hoping that was it. I will update when we get the results back. The high B6 really scared me as far as managing supplements for him- I really don't know much about supplements, which ones can be toxic, dosage etc, and I don't think any of the doctors that we have been working with do either. I looked up his recent drugs (amoxicillan, erythromycin, reglan, pepcid) and B6 and don't see an obvious connection. He is only on the Reglan now, and we are backing off of that.

He has been eating meat and eggs daily, but I am now going to supplement with Choline as well. Any advice on dosage for Choline, B1 and D? I've been giving 4000-6000 D (he is only 60 lbs). Thank you for the tracking website. We're meeting with a dietician today, hoping that it will be helpful and not just the same advice on avoiding cross contamination and reading labels.

[trents]

B vitamins are all water soluble. Any excess is peed out and will likely show in bright yellow urine (mostly due to riboflavin (B2). So there are no toxicity concerns with high doses of B vitamins.

[Wheatwacked]

I take 10,000 IU of vitamin D, 500 mg Thiamine and 500 mg Choline.  There is not much difference between 13 year old and adult for RDA and UL.

 

[Wheatwacked]

On 7/26/2023 at 11:31 AM, MominWA said:

test for Vitamin D- we have been supplementing since we found out it was low. It is now at 34,

So earlier I assumed the 34 was 34 ng/ml which is just above deficient level.  But if it is 34 nmol/L that is equivalent to only 13.6 ng/ml.  

     Vitamin D in Children’s Health  "It is recommended that targeting a 25(OH)D level of 40–70 ng/mL [ 100-175 nmol/L] for each individual would provide optimal health benefits and reduce health care costs. Current recommended doses of vitamin D supplementation fall short of what is needed to obtain ideal serum levels."

     Safety of High-Dose Vitamin D Supplementation Among Children Aged 0 to 6 Years  This systematic review and meta-analysis suggests that vitamin D supplements in daily doses to 10 000 IU/d or bolus doses to 600 000 IU are well tolerated in children aged 0 to 6 years.

"According to the US Endocrine Society Clinical Practice guideline published in 2011 vitamin D deficiency is defined as 25(OH)D less than 20 ng/mL (50 nmol/L), vitamin D insufficiency is defined as levels between 21 ng/mL and 29 ng/mL [52 to 72 nmol/L]"

Below 50 nmol/L he is clearly deficient and even at risk for Rickets.  Whether or not raising the D plasma is the cause of gastroparesis his immune system is severly compromised leaving him at great risk for future illnesses.  Go for the vitamin D shots if you can to bypass any malabsorbtion issues caused by his Celiac Disease..  Monitor his PTH (parathyroid hormone) if calcification is a worry but hypervitaminosis D is very rare.