Help with EPI

[teddyharry]

This is on behalf of my Daughter Katey, she was diagnosed with EPI 4 years ago, her doctors know nothing about EPI, so she has struggled on her own, she takes creon, we researched that she should be taken replacement vitamins , Dr says she dosent need them, over time her health has deteriorated she has aching arms legs painful back, she is exhausted all the time, now her teeth are loose one has fallen out, we don't know where to turn, im convinced she has nutrient deficiencies , can anyone help

[madonbrew Pioneer]

Hi, sorry to hear about your daughters issues. Is she under a gastroenterology consultant here in the UK?

[teddyharry in reply to madonbrew]

No she doesn't see anyone,

[madonbrew Pioneer in reply to teddyharry]

Is it possible for her GP to refer her to one? I'm sure she should be under one here if she's been diagnosed with EPI. They are more likely to know more about it than a GP and also underlying causes and get her on the right treatment paths.

[teddyharry in reply to madonbrew]

Thank you so much for replying to me, I'm afraid the doctors in England don't know much about EPI, Sadly she has just been left to become very poorly.

[madonbrew Pioneer in reply to teddyharry]

I am in the UK...down south, under Southampton and became sick aged 19. I've had amazing care, but thankfully had a GP who referred me to the right people once they knew I was beyond them. I don't know how old your daughter is, but I would definitely fight on her behalf to be seen by a gastroenterologist. It might take some time with NHS waiting lists, but I have learnt that sometimes here we need to really fight our corner until we get what we need. It can be hard work getting there sometimes, but really once seen by the correct teams, there should be much more help for her!!

Don't give up!!

[teddyharry]

Thank you for your response, take care, stay well.

[Susaberry]

Hi, Your daughter probably is vitamin deficient. It’s hard for us to absorb fat soluable vitamins. I take 5000 units Vitamin D, 2500 units vitamin A, The water soluable vitamins I take are 1000 units vitamin E. I take 1000 units vitamin C, under the tongue B complex vitamins. Also my B12 is consistently low so I give myself an injection of B12 each week.

This is what I do after having blood work that I was deficient . I can’t take creon because of the pork so I eat a very low fat diet..

Creon in the US has a program in which they provide free vitamin/ mineral supplements to its customers. I don’t know if it’s the same in the UK.

[teddyharry in reply to Susaberry]

Thank you so much for this, she has seen every doctor at her surgery and they say she dosenr need to take any vitamins that was four years ago, but They are wrong she is so poorly. Thank you again you have been very helpful

[Susaberry]

Navigating this disease is a mine field. So many doctors don’t understand CP. Even specialists disagree. Some dismiss you because they don’t want to deal with it. It’s frustrating.

[teddyharry in reply to Susaberry]

None of the doctors know anything about EPI, Some have never heard of it, So they have been no help at all, And the blood tests they have done are just standard, Katey needs a blood test that looks at what nutrients she is low in, I'm convinced she is nutrient deficient, we are going to look for a private EPI doctor, thank you again for your help, can I ask how you knew what doze and what vitamins to take.

[Susaberry]

The doses are standard ones you can find at the pharmacy or on Amazon. I use the Now brand.

[teddyharry]

Thank you for that, do you have blood tests to check your vitamin levels?

[Sshe in reply to teddyharry]

Hi! I'm in the US (so hopefully this is still helpful) and was diagnosed with EPI seven years ago then CP later. Last year, my GP started testing my vitamin & mineral levels along with my A1C every 3 months because I was showing signs of deficiency. I've spent the last year on oral supplements for potassium, calcium, and iron because of EPI. The iron supplements didn't work, so I had to do IV iron treatments this year as well. I also take Vitamin D, moringa, biotin, and collagen peptides every day and had to do IV potassium after a nasty bout of covid that led me to the emergency room. I've completely changed my diet to maximize nutrients (whole foods, whole grains, lots of berries and veggies, and fish), but I don't think that diet change would make much of a difference if I wasn't taking Zenpep already. Creon ended up not working well enough for me. It's taken me seven years to get to a point where I'm more confident about my own treatment plan - even more confident than my doctors are! I've had to become my own advocate and to push for what I need. It's EXHAUSTING and time consuming, but EPI and CP aren't fair that way. What works for me isn't the solution for anyone else (EPI and CP are annoying like that), but I'm happy to help with more info if you want it.

[teddyharry in reply to Sshe]

Thank you so much for your help

[xavier352]

here are my notes on resources which are US centric but the generic parts may prove useful. good luck

RESOURCES

Pancreas National Foundation EPI Learning Module

animatedpancreaspatient.com...

Medscape technical overview (requires free registration for medical publications site)

emedicine.medscape.com/arti...

Treatment guidelines from BMJ

bmjopengastro.bmj.com/conte...

Mission Cure advocacy group

mission-cure.org/

youtube.com/c/MissionCure

Pancreasfest Annual Conference Pittsburgh June 2024

pancreasfest.com/

The Consumer's Guide to PERT

everydayhealth.com/exocrine...

Pancreas Anatomy & Physiology (15 min video)

youtube.com/watch?v=9TSt9Iu...(Not working as expected?)

Functional Medicine framing

drruscio.com/neural-retrain...

“Do-It-Yourself Pancreas System” - blog with numerous EPI research and resource links and summaries

diyps.org/

Facebook support group

facebook.com/groups/1503696...

NB this group is somewhat traumatizing but there are some knowledgeable people.

Always take online advice with a big grain of salt & discuss with your doctor ASAP

DIAGNOSIS

4 test options: fecal elastase, fecal fat, secretin stimulation (aka pancreatic function during an endoscopy), or imaging (ultrasound or MRI)

RECOMMENDED SUPPLEMENTS

Zenpep

Creon (free program offering vitamins)

Choline or lecithin

Vitamins A, D, E, K

B12

Calcium

Zinc

Omega 3s

Copper

CoQ10

Probiotics

Alpha lipoic acid

MCT optimized w/pancreatic extracts

medicalnewstoday.com/articl...

Herbal remedies

leaf.tv/6752860/herbal-reme...

Herbal suggestions

(scroll down): stlukes-stl.com/health-cont...

NUTRITIONIST

if you live in a US state with NATURAL GROCERS, you can set up a free appointment

naturalgrocers.com/ The quality of the nutritionists they have has been consistently substantially better than hospital nutritionists in multiple states in my experience.

Your diagnosis generally will allow you coverage to consult a nutritionist through your insurance. Ideally you can try to find someone well recommended who won't give you outdated info.

Pre Pro & Synbiotics

Science based support for probiotics & ferments

isappscience.org/

WEB ALERTS

(you may want to set up for EPI or other diagnoses, drugs etc)

alerts.talkwalker.com

NAUSEA

Gastrosoothe brand of zinc supplementation is formulated to calm your stomach

Alka Clear & Nux Vomica for nausea

Onadestron/zofran OTC

A lot of nausea is driven by irritation of the stomach lining aka gastritis.

Traditional remedies for nausea include peppermint oil, marshmallow, slippery elm, aloe vera, chia, psyllium

Vitamin B12 deficiency is specifically caused by EPI as well as vegetarianism and interferes with the mechanism of the stomach lining

Some people find cannabis very effective against nausea

Avoid raw fresh garlic/ginger/turmeric if it irritates your stomach, very acidic foods like citrus, tomatoes, spicy foods, alcohol, large quantities of vitamin D taken at once. As with everything, YMMV, some people use small amounts of raw or cooked ginger effectively against nausea. Most of these things are worse on an empty stomach or when you are already nauseous.

Anxiety can also cause stomach irritation & nausea so managing your stress in the short & long term will help relieve symptoms.

L-Glutamate helps repair the stomach lining but ironically taking it as a supplement can sometimes irritate your stomach.

Bone broth can restore the lining of your stomach but most of the commercial stuff is expensive and heavily diluted. You should make your own or buy it at a farmers market. The good stuff is very thick and jello like--used to be called demi glace.

Clinical trials

clinicaltrials.gov/

Tips for joining a trial

webmd.com/a-to-z-guides/cli...

Search Recent Medical Research

medlineplus.gov/

Understanding Medical Research

medlineplus.gov/understandi...

Pancrelipase (Creon, Zenpep etc)

medlineplus.gov/druginfo/me...

Low Cost Community Acupuncture Clinics

pocacoop.com/

John Hopkins Medical Institute

Chronic Pancreatitis research clinic (diagnosed with abdominal pain and documented labs)

1-410-855-8069 Intake

hopkinsmedicine.org/psychia...

Clinic CoordinatorTom Moses 410-855-2343 [e-mail]

Conditions that correlate

everydayhealth.com/hs/exocr...

DIET

smaller meals

less fat, saturated

no juice (it taxes the pancreas to metabolize so much fructose all at once without fiber)

ACV/lemon before meals

MANAGING YOUR BOWELS

Once you have a clear diagnosis & your labwork is stable

You may want to try for symptomatic relief:

Carob powder which is constipating

Psyllium which soothes your endothelial lining and will slow or loosen your bowels as appropriate

Most forms of magnesium are laxative, try magnesium glycinate or bisglycinate

NUTRITIONAL RECOMMENDATIONS

Eliminate all suspected food allergens, including dairy, gluten, soy, corn, preservatives, and chemical food additives.

Eat foods high in B-vitamins and iron, such as whole grains, dark leafy greens and seaweed

Eat antioxidant-rich foods, including fruits (such as blueberries, cherries, and tomatoes), and vegetables (squash and bell pepper).

Avoid refined foods, (white breads, pasta, sugar).

Eat fewer red meats and more lean meats, cold-water fish, tofu or beans for protein.

Use healthy oils for cooking, such as olive oil or coconut oil (no fried foods)

Reduce significantly or eliminate trans-fatty acids, found in commercially-baked goods such as cookies, crackers, cakes, and donuts. Also avoid French fries, onion rings, processed foods, and margarine.

**the rest of the notes are here docs.google.com/document/d/...

[teddyharry in reply to xavier352]

Thank you for taken the time to help, much appreciated

[Doglover42]

Please look at ordering the book "Primal Pancreas" by A. Toxopeus. You can order it from Amazon. It's all about the authors personal journey with EPI and pancreas damage, and what he did nutritionally and supplement wise to bring himself back from the brink of death. I'm struggling with bad symptoms, and the book has given me hope. Also, please try and find a holistic doctor if you can afford to. They will be far more help than Western Medicine, who essentially won't do anything.

[teddyharry in reply to Doglover42]

Thank you so much, we will order the book.