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

[knitty kitty]

@Wheatwacked is correct.  

Correcting quickly Vitamin D deficiency by taking high doses is safe and beneficial.  

I ate Vitamin D 3 supplements like m&m's when my level was as low.  I felt much better faster.  It really made improvement faster.  

[MominWA]

3 hours ago, Wheatwacked said:

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.  

   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.

Thank you for bringing up the different measurements. His was 34 ng/ml. I am increasing his dosage to 10,000/day- I've been doing the gels 3x per day, after meals. He seems to have a little more energy today. The dietician was helpful in validating my exclusion diet and gave the OK to feed him all non-gluten foods but to be wary of dairy while he is still healing. She was not helpful with supplements etc. I'm meeting with our naturopath on Monday, I will talk to her about possible vitamin shots.

[MominWA]

On 7/27/2023 at 4:28 PM, Wheatwacked said:

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.

 

Thank you. Do you continue to take these at these doses after the gut has healed? Do you get tested periodically?

[MominWA]

His B6 levels came back higher (although that could just be variation in testing. Here is the B6 timeline:

I supplemented with liquid B vitamin complex for about 1 week, at 1/3 the adult dose (20 mg B6 per dose for him, which is a safe dose from what I read). First test for B6 was taken the day I stopped giving him those. His B6 measured 168 ug/L (normal 3.4-65 ug/L).

 

No additional supplements  of B6 were given. Five weeks later, he just tested at 181 ug/L. Should I be concerned? He isn't showing any signs of B6 toxicity.

[knitty kitty]

@MominWA,

Was your son's phosphate level checked? 

Hypophosphatemia (too little phosphate) can result in high B6 levels.  Hypophosphatemia can occur in Vitamin D deficiency.

https://my.clevelandclinic.org/health/diseases/24040-hypophosphatemia

 

[trents]

On 7/31/2023 at 6:32 AM, MominWA said:

His B6 levels came back higher (although that could just be variation in testing. Here is the B6 timeline:

I supplemented with liquid B vitamin complex for about 1 week, at 1/3 the adult dose (20 mg B6 per dose for him, which is a safe dose from what I read). First test for B6 was taken the day I stopped giving him those. His B6 measured 168 ug/L (normal 3.4-65 ug/L).

 

No additional supplements  of B6 were given. Five weeks later, he just tested at 181 ug/L. Should I be concerned? He isn't showing any signs of B6 toxicity.

I don't understand why you are worried about B6 toxicity or for any of the common forms of B vitamins for that matter. They are all water soluble and excess is just peed out. Toxicity is only a concern with fat soluble vitamins.

[knitty kitty]

"...chronic administration of 1–6 g oral pyridoxine per day for 12–40 months can cause severe and progressive sensory neuropathy characterized by ataxia (loss of control of bodily movements). Symptom severity appears to be dose dependent, and the symptoms usually stop if the patient discontinues the pyridoxine supplements as soon as the neurologic symptoms appear."

https://ods.od.nih.gov/factsheets/VitaminB6-HealthProfessional/

[trents]

8 hours ago, knitty kitty said:

"...chronic administration of 1–6 g oral pyridoxine per day for 12–40 months can cause severe and progressive sensory neuropathy characterized by ataxia (loss of control of bodily movements). Symptom severity appears to be dose dependent, and the symptoms usually stop if the patient discontinues the pyridoxine supplements as soon as the neurologic symptoms appear."

https://ods.od.nih.gov/factsheets/VitaminB6-HealthProfessional/

Even so, OP is not giving anywhere near that amount is she? She states she was giving him half the adult dose.

[MominWA]

On 8/1/2023 at 8:51 AM, trents said:

I don't understand why you are worried about B6 toxicity or for any of the common forms of B vitamins for that matter. They are all water soluble and excess is just peed out. Toxicity is only a concern with fat soluble vitamins.

I guess that is why I am concerned- based on the amount  and time I supplemented B6 levels shouldn't be that high. I am concerned there is some sort of metabolic or organ issue that is causing B6 to accumulate.

Although I did just realize that he was eating a lot of B6 in nutritional yeast, which we sprinkle on popcorn (one of his favorite snacks). He hasn't been eating this as much since he's been sick, but I believe he was eating up to 30 mg/ week B6 in this form. I found this out while researching if nutritional yeast brands were gluten free.

He has gained weight, and we have stopped the Kate Farms formula (much to his delight). He is also able to walk a farther- he walked almost a mile yesterday with a friend. I am really hopeful we have turned the corner.

[MominWA]

On 7/26/2023 at 7:00 PM, 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

....

 

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.

Looking over this again, it still seems unlikely that the high B6 was caused by high dietary intake and the brief supplementation. We are obviously avoiding the nutritional yeast for now. We have not tested for Taurine.

We will be getting a homocysteine test this week. We are also doing a GI map test through his naturopath, another ANA test that is more in depth to look for other autoimmune issues that might be going on, and a Lyme disease test. Doctors see mostly concerned about the recurrent  protein in his urine. His kidney and liver function panels were fine.

[trents]

21 minutes ago, MominWA said:

I guess that is why I am concerned- based on the amount  and time I supplemented B6 levels shouldn't be that high. I am concerned there is some sort of metabolic or organ issue that is causing B6 to accumulate.

Although I did just realize that he was eating a lot of B6 in nutritional yeast, which we sprinkle on popcorn (one of his favorite snacks). He hasn't been eating this as much since he's been sick, but I believe he was eating up to 30 mg/ week B6 in this form. I found this out while researching if nutritional yeast brands were gluten free.

He has gained weight, and we have stopped the Kate Farms formula (much to his delight). He is also able to walk a farther- he walked almost a mile yesterday with a friend. I am really hopeful we have turned the corner.

My bad. I didn't read your post about this carefully enough. I assumed you were supplementing with liquid B6 to increase his levels. But the problem I see now is that they were much higher than normal. So, why then were you supplementing with liquid B6 in the first place? Help me understand. So, I gather you suspect the elevated B6 levels were due to the nutritional yeast use?

Edited August 7, 2023 by trents

[knitty kitty]

@MominWA,

Protein in urine (proteinuria) can be seen in diabetes.  Thiamine Vitamin B 1 is known to improve proteinuria.  

Metabolic Benefits of Six-month Thiamine Supplementation in Patients With and Without Diabetes Mellitus Type 2

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3921172/

And...

A Summertime Stupor

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

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

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

 

[MominWA]

2 hours ago, trents said:

My bad. I didn't read your post about this carefully enough. I assumed you were supplementing with liquid B6 to increase his levels. But the problem I see now is that they were much higher than normal. So, why then were you supplementing with liquid B6 in the first place? Help me understand. So, I gather you suspect the elevated B6 levels were due to the nutritional yeast use?

When he was first diagnosed, I read a lot about common vitamin deficiencies and malabsorption, and immediately started him on a liquid B complex. I only gave him that for 1 week, after which we were able to test for B12 and B6. His B12 was okay, and B6 was high. At the time, I thought it was because of the week of supplements, but it is clear that that is probably not the case. Years of  nutritional yeast on popcorn could be the explanation.

[MominWA]

1 hour ago, knitty kitty said:

@MominWA,

Protein in urine (proteinuria) can be seen in diabetes.  Thiamine Vitamin B 1 is known to improve proteinuria.  

Metabolic Benefits of Six-month Thiamine Supplementation in Patients With and Without Diabetes Mellitus Type 2

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3921172/

And...

A Summertime Stupor

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

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

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

 

I am continuing the B1 supplements. It is hard to pinpoint what has helped him make modest improvement over the last week or two- we upped vitamin D, started the B1 and Choline all at the same time. He has had his glucose tested often and shows no signs of diabetes.

[trents]

MominWA, How confident are you in his celiac diagnosis? I mean your son's antibody score was very marginal and he did not have a biopsy to confirm the diagnosis did he? On top of that, going gluten free did not seem to bring improvement in his symptoms.

[MominWA]

4 hours ago, trents said:

MominWA, How confident are you in his celiac diagnosis? I mean your son's antibody score was very marginal and he did not have a biopsy to confirm the diagnosis did he? On top of that, going gluten free did not seem to bring improvement in his symptoms.

I am pretty confident that he has celiac at this point. He did have a positive biopsy, and we did the genetic test too, he has the DQ2 gene. The doctors keep saying that it is normal to not see improvement for 3-6 months.

[knitty kitty]

@MominWA,

Were your son's magnesium and zinc levels checked? 

[trents]

2 hours ago, MominWA said:

I am pretty confident that he has celiac at this point. He did have a positive biopsy, and we did the genetic test too, he has the DQ2 gene. The doctors keep saying that it is normal to not see improvement for 3-6 months.

Okay, I got lost in the lengthy thread and hadn't realized you probably posted that info earlier. If he had a positive biopsy that settles it.

[Wheatwacked]

On 7/29/2023 at 12:51 PM, MominWA said:

Do you continue to take these at these doses after the gut has healed? Do you get tested periodically?

     Yes and yes.  I get tested every 3 months.  My D has never gone over 86 ng/ml, but when I stopped taking it once for 3 weeks before the blood draw I dropped to 72 ng/ml.  It took from 2015 to 2019 to raise it to 47 ng/ml (don't know the start point but I was a sick puppy) and until 2021 to get from 47 to 80 ng/ml.  

 

On 8/7/2023 at 2:52 PM, MominWA said:

modest improvement over the last week or two- we upped vitamin D, started the B1 and Choline all at the same time.

That is great news.  If I am not mistaken this is the first improvement you've had so keep it up.The healing time ranges from 3 months to two years.   Need for these nutrients doesn't go away.  They are called essential nutrients because we must get them in our food.  Healthy intake is somewhere between the RDA (the minimum) and the Safe Upper Limit. In the US the safe upper limit is often 1/2 the intake that causes side effects.   Hypervitaminosis is much more rare than vitamin deficiency and they all interact. So low vitamin D causes low  phosphate which can cause high B6.   My infant son (biopsy diagnosis in 1976 when weaned) was on Nutramegen for about six months then weaned to a gluten free diet.  

Synthesis of B6 by the gut flora can make a significant contribution to our B6 intake.

      It is common in Celiac Disease to have multiple deficiencies.  Keep up the D until he reaches 80 ng/ml, that is the homeostasis level.  As his D plasma rises hopefully it will control the autoimmune response and start to lower the B6.

You are on the right track if he is feeling better.

 

[Wheatwacked]

@MominWA    If it is not imposing, I was wondering how your son is doing?

[MominWA]

He is doing much better, thank you for checking @wheatwacked ! It is such a relief. I would say he is 95% better, he is starting to build up strength and endurance again, and is back to reading and making stop motions. School starts in two weeks and so does soccer, he is really excited for both. We will keep up the supplements. I really can't thank everyone enough for their input and advice. It is so frustrating to not get the answers you need from doctors. We do have a telehealth scheduled with a specialist at the end of next month, which I will keep. His naturopath just got results from a GI map test back, which will be interesting to see. She said he has some indications of a leaky gut and mild bacterial overgrowth.

 

Now we are on to figuring out if either myself or my husband have it... I had a panel with confusing results... Maybe I should ask those questions in a different thread. My husband has a test scheduled for next week. He's been much more diligent about eating gluten. I'm afraid of gluten at this point, I haven't really wanted to eat it, or bring it in the house.

[trents]

Leaky gut goes hand in hand with celiac disease. Which one is the basis for the development of the other? It's a chicken or egg question at this point.

Can you post your panel results with ranges for negative and positive for each test included?

[MominWA]

I have to admit I was not eating as much gluten as I should have been for a gluten challenge. I was probably eating enough gluten every three days, instead of every day. I guess I assumed my results would be very positive or very negative, not ambiguous. I have never had any GI issues and we ate gluten often for three meals a day before this. I made my own bread weekly, homemade pasta, etc. My mom had Rheumatoid arthritis, and I have mild Reynaud's syndrome (but no RA so far). I was anemic as a child. I had a 23 and me test done, which says I don't have the common Celiac genes (but I know 23 and me is not a medical test). My husband has no history of autoimmune diseases but does occasionally have digestive issues. I probably should do a proper gluten challenge and retest. I do not have a PCP, I am on a waiting list for a doctor in my network and am being seen by an interim doctor, who ordered these tests. 

Here are my celiac panel test results (with the only high result bolded):

Gliadin (Deamidated) IgA: 13  Ranges: Negative: 0-19, Weak positive 20-30, Moderate to strong positive>30.

Gliadin (Deamidated) IgG: 11  Ranges: Negative 0-19, weak positive 20-30, Moderate to strong positive>30

Transglutaminase IgA: <2 Ranges: Negative 0-3, Weak positive 4-10, positive >10

Transglutaminase IgG: 11 Ranges: Negative 0-5, Weak positive 6-9, Positive >9

Endomysial IgA ab negative

Immunoglobulin A, Qn, Serum: 252, normal range 87-352

 

The doctor also ran a O ENDOMYSIAL AB TITER, IGA which was negative,

and a Tissue Transgultaminase IGG/IGA test (I think she didn't know which tests to request so requested the basic and the panel)

Transglutaminase IgG: <0.8 Normal: 0-15

Transglutaminase IgA: <0.5 Normal 0-15

 

I also had her check my B12, iron and D. B12 and iron and ferritin were fine. Haven't gotten the D results back.

[trents]

Has your husband been tested for celiac genes?

[Wheatwacked]

If you all go gluten free, for your son's sake, then your ambiguous test will be moot.