Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Nutrition >> Vitamins http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1301583232 Message started by nikweth on 03/31/11 at 03:53:52

Title: Vitamins
Post by nikweth on 03/31/11 at 03:53:52

Well it appears that I have very low Vit D levels (testing conducted) and my dr. advised me to start taking Vit D3 and due to osteopenia I was also advised to start taking Calcium. Like many patients, I react anaphylactically (not sure if it's a word) to fish. Many, many supp especially Vit D contain fish oil/omegas. Do any of you with fish allergies take Vit D or Calcium without fish ingredients. I'm also allergic to nuts/peanuts so it would have to be void of that as well. Thanks All!

Title: Re: Vitamins
Post by Josie on 03/31/11 at 05:19:55

Hi Nik ,

With your allergies I would be inclined to ask for pharmauctical grade vitamin d and calcium . This is a clear route that you can check for clean products completely free of any potentially serious contaminants for you There are products here in the UK . I am having a tried day and can't remember where you live . I will get the name of the product in case you want to order it from a british pharmacy online ,

Its a mixture of vitamin d and calcium in one product ;-)

Josie

From British national formulary , UK , Doctors prescribing bible ( available free online ) Book and site updated every 6 months . This is from most recant march 2011

Calcium and Ergocalciferol (Non-proprietary)
(Calcium and Vitamin D)
Tablets, calcium lactate 300 mg, calcium phosphate 150 mg (calcium 97 mg or Ca2+ 2.4 mmol), ergocalciferol 10 micrograms (400 units). Net price 28-tab pack = £7.10. Counselling, crush before administration or may be chewed

I can get a list of generic companies that make it , if you wanted to check details . It is pharmacautical grade vit d and calcium .

Title: Re: Vitamins
Post by Josie on 03/31/11 at 05:32:46

Sorry , another thought . Has you parathyroid hormone level been checked ? As it controls calcium uptake . I posted before in shawnas hello in the introducing yourself section ;-)

Josie

Title: Re: Vitamins
Post by nikweth on 03/31/11 at 07:45:59

Thanks Josie for the feedback. I am in the U.S. (Michigan) and am interested in the names of the generic companies if you have them. Thanks so much.

Title: Re: Vitamins
Post by Josie on 03/31/11 at 09:20:08

Hi Nik .

I will get details from my pharmacist tomorrow xxxxxxxxxxxxxxxxxxxx

thanks
Josie

Title: Re: Vitamins
Post by Joan on 03/31/11 at 11:17:11

A supplement manufacturer called "Natural Factors" has a vitamin D3 supplement made from lanolin and in a flax oil base. (I'm sure there are others, too.) This is the NF website, and their product is on this page if you scroll down:

http://us.naturalfactors.com/search.asp?mode=cat&cat=18

Title: Re: Vitamins
Post by Joan on 03/31/11 at 11:18:32

....And you might want to call them and make sure about the ingredients and that it's not processed in a plant that makes anything with fish oil or other things you're sensitive to.

Title: Re: Vitamins
Post by Josie on 04/01/11 at 04:15:50

Hi Nik ,

2 UK pharmacies for you which supply the ergocalciferol and calcium I told you about . These are trusted by my pharmacist .

Actavis UK LTD - www.actavis.co.uk

Kent pharmaceuticals - www.kentpharm.co.uk

I haven't contacted them about your sensitivities so can't say regards those . They supply generics to pharmacies here in the UK and have contact points on the websites i had a quick look at ;-)
I hope this helps ;-)
Josie

Title: Re: Vitamins
Post by nikweth on 04/01/11 at 08:49:50

Wow! Thanks so much. I really appreciate all your help.

Title: Re: Vitamins
Post by Sandi on 04/03/11 at 17:30:49

HI! I also am in the very low D category, I'm currently on 10,000 mg a day and react horribly to so many things including vitamins and fish! I'm tolerating Thorne vit D3, 5000 mg vegi caps. Here's a link to the site
http://www.thorne.com/Products/Vitamins/prd~D138.jsp
I use them, allergy research group, complementary prescriptions, I really really need to get to finding a calcium, I guess I'm going to try thorne. I've been on a horribly restricted diet for 20+ years and the vitamins I take are addressing survival issues currently. Ive rejected so much that I'm never quite up to testing more, but calcium at this point I really need to concentrate on. So thanks for bringing this up! When I looked up the web address for you it got me to looking up calciums again.

Title: Re: Vitamins
Post by nikweth on 04/04/11 at 00:37:59

Thanks. I will look up Thorne. Do you have specific food allergies that you need to be careful of?

Title: Re: Vitamins
Post by jbean on 05/20/11 at 13:22:06

Just another note on the vitamins. I found out that I have a nickel allergy. It's actually kind of hard to find vitamins without nickel in them. I found one kind of basic multivitamin from CVS.

Title: Re: Vitamins
Post by Ccc on 07/12/11 at 14:02:05

D2 is not found in the body, D3 is. Heany et al. Dec/10 found D3 to be the better product. You can also get 10 minutes of noontime sun on your legs and tummy and produce a ton of Vit D from cholesterol in your skin April thru October ) Protect areas that are regularly exposed to the sun as the net sun effects are cumulative.

Allergy Research Group is reputable. Carlson's is a good company but Allergy Research and there us another one... PM me and I can give you the name of a mail-order outfit carry varying hypo-allergenic products that practitioners use.

For bone integrity, one serving of green leafy vegetables will provide the trace vitamins /minerals you need to optimally make use of Vit D & Calcium. Otherwise, be sure to have some magnesium on board... As well as boron , etc

The body can make use of no more than 500 mg at a time. If you have a very high fiber diet, it will make it more difficult to absorb.

Vibration technology is hitting the main stream. It reverses osteoporosis in post-menopausal women. It was originally developed for re-entering astronauts afterong space journeys. It sounds too good to be true but it does work. It's currently used by professional sports teams and large university athletic departments. I have not found them used commonly in rehab. Some wellness ctrs have them and fitness trainers. They cost anywhere from 3,000-6,000 to purchase a home model. So finding a place that one might be cost effective. You need to be careful to find a reputable product. Right now there are some companies selling side to side and up and down motion. Side to side is no good. Up & down is correct. If it's cheap, it probably isn't worth it... At this time. The patent will be up next year so it will be interesting to see what happens with the price.

Please be aware the you want your Vit D levels to be above 50ng/ml. Your MD should be able to do this therapeutically with monitoring.

As one poster said, you should have a full panel to try to find another reason for the osteopenia. That should always be done before starting. Get a consult with an endocrinologist specializing in bone metabolism. Just one visit and then you can return to your PCP . The endo will do a better manual exam than the MD and you'll have someone to consult with later if needed.

Both my daughter and I have been treated therapeutically with Vit D. After a year, we found that our allergy and asthma symptoms were so much better. Our immunologist said they are starting to see these reductions with higher serum Vit D levels.

I have bone issues so I've been at this a while.

Title: Re: Vitamins
Post by DeborahW, Founder on 07/13/11 at 08:01:50

In regard to vibration therapy, that is probably not the best idea for mast cell disease patients. Vibration is a common trigger for mast cell degranulation. So I would not advise jumping on that practice.

Title: Re: Vitamins
Post by Ccc on 07/13/11 at 11:27:29

Of interest, mast cell and Vit D:

http://www.vitamindcouncil.org/health-conditions/infections-and-autoimmunity/anaphylaxis/how-does-vitamin-d-work/

Title: Re: Vitamins
Post by Patricia on 07/20/11 at 07:12:48

Is there a good time of day to take calcium supplement
And does it interact with any antihistamines ect
My husband takes levoxyl for his thyroid first thing in the morning and I know you have to be careful about taking that alone so the body can fully absorb it.

Title: Re: Vitamins
Post by Starflower on 07/20/11 at 07:23:24

Antihistamines don't interact with calcium, so no worries there. In fact, calcium is helpful for instant relief from heartburn while you're waiting for an H2 antihistamine to kick in. That's how Pepcid Complete works. I'm on thyroid hormones too (Synthroid), so I make sure I don't take any calcium until lunchtime.

BTW... your body can only absorb about 500mg of calcium at a time. If you need more than that it's best to space out the doses.

Heather

Title: Re: Vitamins
Post by Patricia on 07/20/11 at 08:25:44

Thanks so much, he had a bone density scan that showed ostepoenia...we go in tomorrow morning to talk to the orthopedic.
He also will tell us the results of an MRI he had done on his elbow and shulder because of the terrble tendinitis inflammation he has.

Praying that there's no major damage!
Thanks again!
Patricia

Title: Re: Vitamins
Post by Lisa on 07/20/11 at 16:05:21

Patricia,

Does your husband show any positive autoimmune markers? My reason for asking is because my son has masto and he has autoimmune markers within the rheumatoid arthritis area. His markers are very vague and they can't diagnose Rheumatoid arthritis, so we know by this that his autoimmune issues are not a separate disease, but part of his mastocytosis. Yet, this is where he shows his activity - with the connective tissues. Whereas my markers are generalized autoimmune markers and this is where I show my activity.

Due to the fact that they have yet to draw the profile of the autoimmune masto patient, the researchers have no idea of how this works and how the patients present nor how the disease behaves and affects us. We can only draw theories.

But from looking at my son's case and my own, from what we can figure, the disease doesn't cause "mastocytosis" of those tissues, but this is where it creates inflammation instead. It seems to me that the autoimmune element of masto gives us patients a double whammy in that those of us who are proven clonal not only have the proliferation of the MCs where they usually will proliferate, but there is also the autoimmune activity affecting that specific region in which it is showing the markers.

So, I would suggest that you get a rheumatologist to do a full, thorough workup of your husband and try to see what may be happening there.

Another suggesting is that of the ketotifen. My son has been on the ketotifen for about 2 months and he's feeling DEFINITE benefits from it! His joints are not so loose, they are not hurting as much and his ANA test improved going from a 1:320 to a 1:80!!! It's confirmation that the Ketotifen is WORKING!!

Lisa

Title: Re: Vitamins
Post by Patricia on 07/20/11 at 16:50:45

Thanks so much for your replay...yes my husband has a series of autoimmune disorders going on. His ANA was 1.2, he has hashimotos, his IgE are in the 10,000 to 14,000 range. His STAT 3 gene was neg for hyper IgE syndrome. His inflammatory or RA markers were negative and we saw a rheuamatplogist at NIH who didn't think he had RA and they ultra sounded his elbow ect and it showed connective tissue and tendon inflammation.
I worry that RA could be there or starting to emerge and want to make sure it's controlled or doesn't cause further damage to his joints.

My husband had hpilori 10 years ago that took a long time to clear up and he had an allergic reaction to the antibiotics so he was only to take the PPI. I often wonder if this infection that was never properly healed somehow caused his immune system to start making these IgE antibodies. Creating an overactive immune system...

The mast cell stuff combined with autoimmune issues makes the situation even more difficult to manage or control!

My husband started ketotifen (4mg in the evening) in January and it has been a huge help. He still has GI problems and the tendon pain is a real downer, the extreme heat makes it worse. We recently switched his am meds from claratin to allegra and wow what a difference! Way more energy! It took him a couple days to adjust...it was like he swallowed speed or something! It was awesome to have 3 days with him where he felt normal and had energy. We probably over did it and on day 4 his stomach gave out for unknown reasons but he managed to recover pretty quickly.

Oh my sister in law has MCAD with IgE 150, hashimotots, raynauds...father in law tryptase 55, IgE 150, ANA 1.4, hashimotos, gout, colon cancer survivor.
Both our daughters have elevated tryptase 20 and 28, IgE 350 -1650 range, and one of them has a positive ANA 1.

It's a doozy and in our family theres definitely a genetic component...

Title: Re: Vitamins
Post by jbean on 07/26/11 at 14:10:17

New research comig out on vitamin D. Very interesting stuff. Seems to have a role with inflammation, and some cancers. Can't wait to hear more about this one!