14 year old with Celiac & EOE still suffering...

[Nacina]

Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 

[Scott Adams]

It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues:

• Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends.
• Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation.
• Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms.
• Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms.
• In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.

[knitty kitty]

Welcome to the forum, @Nacina,

What supplements is your son taking?

[Nacina]

Well, that's a big question. When he was seeing the nutrition response testing dr. that changed each time we went in. He hasn't been seeing him regularly for theist ten months. When he had a horribly week in March I started him back on the 4 that were suggested to keep him on. Those are: Standard Process Chlorophyll Complex gluten-free, SP A-F Betafood gluten-free, SP Tuna Omega-3 Oil gluten-free, And Advanced Amino Formula. He also takes a one a day from a company called Forvia (multivitamin and mineral) and Probiotic . Recently he had to start Vitamin D as well as he was deficient.  

[knitty kitty]

@Nacina,

I would add a B Complex to all that and extra thiamine B 1 and magnesium glycinate, and high dose Vitamin D to get his level up faster.  

We need the B vitamins to repair our body and for energy to function.  Thiamine B 1 is especially important for athletes.  Thiamine works with magnesium.  Thiamine and magnesium deficiencies can cause constipation.  All eight essential B vitamins work together.  Due to poor absorption in celiac disease, supplementing with B vitamins boosts our ability to absorb them. 

Here's some reading material that is helpful...

An open-label, randomized, 10 weeks prospective study on the efficacy of vitamin D (daily low dose and weekly high dose) in vitamin D deficient patients

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6618212/

Micronutrients Dietary Supplementation Advices for Celiac Patients on Long-Term Gluten-Free Diet with Good Compliance: A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6681258/

The Effects of Thiamine Tetrahydrofurfuryl Disulfide on Physiological Adaption and Exercise Performance Improvement

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6073388/

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/

B Vitamins: Functions and Uses in Medicine

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9662251/

Vitamins and Minerals for Energy, Fatigue and Cognition: A Narrative Review of the Biochemical and Clinical Evidence

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7019700/

A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10542023/

Effects of thiamine supplementation on exercise-induced fatigue

https://pubmed.ncbi.nlm.nih.gov/8815395/

The effects of endurance training and thiamine supplementation on anti-fatigue during exercise

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4241913/

Hope this helps!

[knitty kitty]

Forgot one...

https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/

[Posterboy]

Nacina,

Knitty Kitty has given you good advice.

But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results.  The kind found in most Multivitamins have a very low absorption rate.

This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times.

https://www.naturalmedicinejournal.com/journal/thiamine-deficiency-and-diabetic-polyneuropathy

quoting from the article....

"The group ingesting benfotiamine had maximum plasma thiamine levels that were 6.7 times higher than the group ingesting thiamine mononitrate.32"

Also, frequency is much more important than amount when it comes to B-Vitamin. These are best taken with meals because they provide the fat for better absorption.

You will know your B-Vitamin is working properly when your urine becomes bright yellow all the time.

This may take two or three months to achieve this.......maybe even longer depending on how low he/you are.

The Yellow color is from excess Riboflavin bypassing the Kidneys.......

Don't stop them until when 2x a day with meals they start producing a bright yellow urine with in 2 or 3 hours after the ingesting the B-Complex......

You will be able to see the color of your urine change as the hours go by and bounce back up after you take them in the evening.

When this happens quickly......you are now bypassing all the Riboflavin that is in the supplement.

The body won't absorb more than it needs!

This can be taken as a "proxy" for your other B-Vitamin levels (if taken a B-Complex) ...... at least at a quick and dirty level......this will only be so for the B-1 Thiamine levels if you are taking the Fat Soluble forms with the Magnesium as Knitty Kitty mentioned.

Magnesium is a Co-Factor is a Co-factor for both Thiamine and Vitamin D and your sons levels won't improve unless he also takes Magnesium with his Thiamine and B-Complex.

You will notice his energy levels really pick up.  His sleeping will improve and his muscle cramps will get better from the Magnesium!

Here is nice blog post that can help you Thiamine and it's many benefits.

I hope this is helpful but it is not medical advice

God speed on your son's continued journey

I used to be him. There is hope!

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

 

[Nacina]

Thank you!