Adek

DebE13 · Post by **DebE13** » Sat Dec 10, 2011 7:14 am

Is anyone familiar with the supplement? It's actually not related to MC issues in this case but I'm finding so much knowledge here I thought I'd ask.

My 16 yr old son has primary sclerosing cholangitis and the GI recommended he take Adek for malabsorption issues. Apparently not all pharmacies carry it but mine did. However, I received a call from them earlier in the week that Adek is no longer produced. I'm still waiting to hear back from my GI as what to do. I suppose it's unrealistic to expect and immediate call but it seems EVERY time I call to check in or with a problem I don't hear back for days or until the next week. Grrr. Sadly enough, there's not much that can be done which is heartbreaking to me and it's a waiting game for his health to deteriorate. Right now we're dealing with managing the puritis. Whenever something is brought up to "help" him, I want to act on in immediately. I have a hard time with the patience thing (my issues included).

I've started planting the seed of gluten sensitivity in his head because I'm afraid that he may be following in my footsteps. 70% of people with PSC also have ulceritive colitis and it scares me to death to think of the road that lies ahead for him. At 16, I doubt if he'd be willing to try going GF but hopefully if I start educating him now it may come down the road. He takes cholestyramine right now to manage the itch but the stomach pains he gets regularly interfere with his eating and when he does eat it's always lots of bread products/cereal,etc. It makes me sad because he just laughs at me and says "don't worry, mom." All I can do right now is to keep encouraging more fruits and veggies.

I working on getting my tests from Enterolab so once I get through that it'll be his turn. My insurance company said if my GI approves and the test isn't offered in-network, then it'll be covered under my plan. I have to find out more details from my insurance company and then bring it up to my GI (not looking forward to that) but I have my fingers crossed. Whenever anyone asks what I want for Christmas this year, I have to bite my tongue because I want the tests to be covered under my insurance for both me and my son- that's would make the perfect present for me. Although, that's not the answer anyone wants to hear so I refrain.

Post by **tex** » Sat Dec 10, 2011 9:11 am

Hi Deb,

When you said "Adek", I assumed you were talking about the vitamins A, D, E, and K, because those vitamins are indeed casualties of malabsorption issues, and vitamin A is even sometimes prescribed to treat malabsorption. Since I can't find any such product when I Google it, I have to plead ignorance.

I will say this, though - be very careful about taking a supplement that contains vitamin A, because most products contain the active form, retinol, and excessive amounts of retinol can have very toxic effects. It's much safer to supplement for vitamin A with beta carotine, (which is the natural form found in food), and let the body convert it into retinol, because if the body doesn't need it, it won't convert it, so one can eat all the beta carotine desired, without having to worry about toxic effects. Among other issues, ingesting too much retinol definitely depletes vitamin D levels, which tends to weaken the immune sustem. In fact, probably the most critical predisposing event leading up to the development of UC and Crohn's, is vitamin D deficiency - IOW, virtually everyone who develops an IBD is critically deficient of vitamin D. IMO, IBDs develop because of a critically weakened immune system, (due to inadequate vitamin D), and gut bacteria imbalance.

If I had a son with PSC, I would immediately begin supplementing vitamin D at a level of at least 5,000 IU daily, and I would get his 25(OH)D level tested, with a simple blood test, and if it is indeed low, (which it almost surely will be), the daily dosage should be increased, by at least doubling it, for 5 or 6 weeks, to get the level up to a safer amount, and then test again, to see where the level actually is. A level below 30 ng/ml is rather vulnerable. I'm not a doctor, but I've seen data related to a lot of cases, and IMO, to prevent the development of an IBD, the 25(OH)D level should be maintained at least over 50 ng/ml, and if I were in that position, I would preferably try to keep it up in the 70 to 80 ng/ml range, in order to keep my immune system resistance at an optimal level.

Small amounts of retinal are OK, but he should get most of his vitamin A from food. Beta carotine can be found in foods such as sweet potato, watermelon, eggs, chicken liver, carrots, spinach, papaya, apricot, mango, peas, and oatmeal, for example. If his skin seems dry and flaky, and he has problems with injuries healing, he may indeed have a vitamin A deficiency.

You can call or e-mail Enterolab to get the insurance codes, if you don't already have them.

If none of this has anything to do with what you were actually asking about, I apologize for wasting your time.

Tec

DebE13 · Post by **DebE13** » Sat Dec 10, 2011 9:46 am

No, you've not wasted my time at all. I appreciate your knowledge- it's been so helpful and I think your posts have a lot to do with my recent improved mood.

My son had labs done in August that showed everything was in the normal range but Vit E was on the low end. The GI recommended a multi vitamin at the time if I wanted. The recommendation for Adek was just made after he had a bone density test in October, however, it came back as normal but now provides a baseline for the future. I'm not sure what spurred that recommendation and will have to ask for more detail when I call on Monday. I just don't have much faith in them and am very skeptical when they tell me anything. I am the furthest thing from an expert (on any health topic) but I've found that I had to explain what PSC is to one of the nurse's I talked with and that sent a chill up my spine. I know there's not a lot of information out there but they are the professionals- the days of following orders like a lost sheep are over. I just have to be aware of my tone when I talk with them- something about bees, vinegar, and honey

I like the idea of getting what we need from food, too. Now I just have to get him to eat. Maybe a multi vitamin for now would be the best bet.

Enteorlab was very prompt about getting the insurance codes for me. Now I'll just have to sort through the actual steps I have to go through if I can get my GI to agree. I wasn't sure if the kit had to be in the docs office name to make it official. I'll have to do some investigating- will be worth the time and effort if I can get it paid through insurance.

Thanks again for your two cents- I'd rather be forking out the co-pays, out of pocket expenses, etc. to you than the doctors. You've been much more informative. I am working on attitude because it seems EVERY time I hang up the phone after talking with the docs office I am fuming. When I log off from here I actually have a smile because there may be no cure & no iron clad answers but I leave with tools to help make my life better.

Post by **tex** » Sat Dec 10, 2011 10:26 am

Deb wrote:I am the furthest thing from an expert (on any health topic) but I've found that I had to explain what PSC is to one of the nurse's I talked with and that sent a chill up my spine.

I know the feeling. IMO, you obviously know more than you realize, and there are two big distinctions between you, I, and the rest of the members here, and the GI specialists who treat us - we freely admit that we don't know everything there is to know about this disease, and we do everything we can to learn more about it, whereas the specialists can't afford to admit that they don't know something about the disease, because they're billing us big bucks for "expert" advice, and they're too busy making money to waste time learning more about the disease.

Deb wrote:Thanks again for your two cents- I'd rather be forking out the co-pays, out of pocket expenses, etc. to you than the doctors. You've been much more informative. I am working on attitude because it seems EVERY time I hang up the phone after talking with the docs office I am fuming. When I log off from here I actually have a smile because there may be no cure & no iron clad answers but I leave with tools to help make my life better.

Thank you for the kind words - you made my day. I agree with you that many doctors really need to work on their bedside manner, empathy, patient relationships, or whatever you want to call it, because the ambiance of their offices truly leaves a lot to be desired. IMO, if they don't begin to correct those issues, eventually they are going to see more and more of their patients turning to naturopathic treatments.

Tex

DebE13 · Post by **DebE13** » Wed Dec 14, 2011 6:06 am

I spoke with the nurse today about the Adek and she didn't seem all that informed. The pharmasist recommended the vitamin supplement Celebrate Multi- ADEK which is not RX. I was told I could get it on Amazon and I could look into it and call the pharmacy if I had any questions. I was a bit frustrated since they, the medical professionals are supposed to be the ones managing my son's treatment plan but it wasn't worth getting overly upset. I did ask about the RX part though since if it's availabe as an RX and I already pay through the nose for health insurance, I'd rather have it be routed that way because the co-pay would be cheaper than buying it on-line. I told her I would do the investigation. It seems to be standard supplement but it has dairy. He hasn't been tested for food sensitivities (yet) so right now it shouldn't be a big deal.

Do you think the focus on the ADEK vitamins are worth the extra expense compared to the regular multi-vitamin for teens that he's already taking?

sarkin · Post by **sarkin** » Wed Dec 14, 2011 9:33 am

I'm not familiar with ADEK, but you can absolutely reach those levels of *any* supplement, without adding the potential risk of dairy... rather than waiting till your son has a proven reaction. iHerb.com shows nutritional info on supplements, and sometimes has good prices (plus free shipping over a certain dollar amount). Gloria posted about Freeda vitamins recently, which are free of gluten, dairy, and many other ingredients most of us avoid, and they're about to raise prices... so this would be a good week to pounce!

Also, most prescription forms of Vitamin D use the useless, inactive form, D2, rather than the one the body can actually take advantage of, which is in most supplements (D3). Hmmm, could that be why certain Vitamin D studies show ambiguous/doubtful benefits? Imagine the threat to the medical/pharma industry... I just heard on the radio that some of the moves to reduce hospital readmissions are costing hospitals more than the penalty they would have to pay if they don't improve on this measure. So it might be worth *not improving* and paying the penalty. After all, readmissions are good for the bottom line. Bad if you include human suffering as a measure, of course... who's in charge of that?

Good luck,

Sara

Post by **tex** » Wed Dec 14, 2011 10:07 am

Well, since I know practically nothing about that supplement, and very little about PSC, I'm hoping that your son's GI doc knows a lot more about it than I do, so I wouldn't feel comfortable contradicting his advice, and suggesting that the supplement is worthless.

On the other hand, I tend to agree with Sara, and I have a hunch that if you're making sure that his diet includes a normal amount of calcium, and adequate amounts of magnesium and phosphorus, and if he takes enough vitamin D to keep his 25(OH)D level at least over 30 ng/mL, (and as I mentioned before, preferably up around 50 ng/mL, and I would consider 70 or 80 ng/mL to be even better), he should have everything needed for good bone health. To counteract the PSC, he should at least take some vitamin A, (no more than 3,000 IU as retinol, and the rest as beta-carotene), plus the vitamin D, and vitamins E and K. Personally, I would consider a total of around 5,000 IU of vitamin D daily to be a minimum for his situation. I take 2,500 in the summer, and 5,500 IU most of the rest of the year, and I live in sunny Texas.

Hopefully those vitamins, (especially the vitamin D), will prevent UC from ever developing. Here's some good information that Polly posted on the vitamin A issue:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=12600

Vitamin A, (retinol), dilutes the effectiveness of vitamin D, so the more vitamin A one takes, the more vitamin D is needed, to keep the 25(OH)D level up where it needs to be. However, as you can see by the last link in this post, from a bone health perspective, vitamin A appears to always trump vitamin D, so that too much vitamin A in the form of retinol can weaken bones, regardless of how much vitamin D is available. Here's another reference on vitamins A and D:

http://www.vitamindcouncil.org/news-arc ... nd-cancer/

The study at the following link shows that, (in rats, at least), retinol induces bone resorption, regardless of the amount of vitamin D available, so I have to conclude that one is probably better off taking a minimum amount of vitamin A supplement in the form of retinol, (as far as bone health is concerned).

http://jn.nutrition.org/content/133/3/777.short

Here's another research report that shows that the calcium response to vitamin D is restricted by vitamin A:

http://www.ncbi.nlm.nih.gov/pubmed/11585356

Tex

DebE13 · Post by **DebE13** » Sat Dec 17, 2011 9:09 pm

Thanks so much for the info! I know this isn't a PSC forum but I appreciate your input because I've been told so little about the disease from the GI. It's really a shame. I've learned lots from the internet but you have to be careful about the source. I've basically been told that it's a rare ( and even rarer in children) disease that has no cure and we just wait for liver failure (no timeline). Aside from the severe itching & easier tendency to fatigue he's a "healthy" kid. Hopefully, it'll stay that way for a long time but when I look at the wealth of information here and how it relates our issues, I panic because if there's something I/we can do nutritionally or whatever..... to maybe impact how soon things will progress, I want to be doing it.

I've not yet learned how to interpret test results but am working on it. The nurse generally, rattles off numbers then tells me if that falls into the "normal" range of if it's high. Reading posts throughout this site has made me realize that the doctor's interpretaton of lab results isn't always on track. I've ordered copies of medical records/labs for me and my son so I can start monitoring them too.

I wonder why my GI hasn't recommended supplements for malabsorption issues?

This is a whole new world to me- I've been scratching the surface for the past 4 years and I am thankful for the support offered here. It makes a world of difference.

Lesley · Post by **Lesley** » Sat Dec 17, 2011 10:29 pm

I wonder why my GI hasn't recommended supplements for malabsorption issues?

Why would my (former) GI not be willing to accept that, since my entire digestive tract seems to not to be in good working order, and that it's purpose is to process food, that the foods I put in are going to affect it?

And why do they think they are God when God doesn't think he's a doctor?

Post by **tex** » Sat Dec 17, 2011 10:46 pm

Deb,

If you need help interpreting those medical reports, please don't hesitate to ask. We don't speak fluent "doctorspeak", yet, but we're slowly learning the language.

Most GI specialists don't realize that MC patients have a malabsorption problem - they think that's reserved for celiacs, only.

Tex

DebE13 · Post by **DebE13** » Sun Dec 18, 2011 4:46 am

Thanks, I'm sure I'll be full of questions. Now I just have to wait for my request to be processed to get our medical records. My family doctor has told that I do have malabsorption issues because of the 3 years of D that was untreated (that was about the period of time of my trial an error in which I was attempting to control it but was unsuccessful). I think that makes me more uneasy because if my doc knows about it, why isn't something more being done? I suppose it's best to just leave it at that and continue on the
self-help path.

DebE13 · Post by **DebE13** » Sun Dec 18, 2011 4:53 am

Thanks, I'm sure I'll be full of questions. Now I just have to wait for my request to be processed to get our medical records. My family doctor has told me that I do have malabsorption issues because of the 3 years of D that was untreated (that was about the period of time of my trial an error in which I was attempting to control it w/out GI doctors but was unsuccessful). I think that confirmation makes me more uneasy because if my doc knows about it, why isn't something more being done? I suppose it's best to just leave it at that and continue on the self-help path.

I faxed the request to my GI on Friday to write lab orders for Entero Lab along with my weekly check in for my prednisone taper....haven't heard back yet, which isn't surprising but I have visions of them waving the papers around and rolling their eyes. Maybe I'll have a pleasant surprise, I'm sticking with the motto, "It never hurts to ask."

Post by **tex** » Sun Dec 18, 2011 9:29 am

Deb wrote:I'm sticking with the motto, "It never hurts to ask."

I agree. If we don't ask, it's certainly not going to happen.

Good luck,
Tex