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MCD - Mast Cell Disorders
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starfish
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Re: Newbie
Reply #15 - 03/05/11 at 10:13:20
 
I am also vitamin D deficient. The MD has me taking 50,000 IU a week. That makes me just on the line. It helped me to feel better though. Smiley
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missybean
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Re: Newbie
Reply #16 - 03/05/11 at 15:59:27
 
Wow starfish! Did your doctor give you any explaination as to why even taking that high of a dose your levels are still on the low end? The highest mine got was 62 and I felt pretty good, that was with tanning and a trip to Florida.
Melissa
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Joan
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Re: Newbie
Reply #17 - 03/05/11 at 18:27:41
 
Has anybody tried bromelain?  It helps break down fat and protein.  Wonder if it would help with Vitamin D absorption?  Mine was low, too, and the doctor told me to take 5,000/day.  I've been worried about taking that much, so maybe I should have another test?

I was afraid to tan because it might be too hot.  Is it hot when you tan?
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Re: Newbie
Reply #18 - 03/06/11 at 03:34:13
 
It's not to bad tanning, if there is a fan in the room you can put on you. But I find I have to keep it around 5 to 7 minutes to not be itchy afterwords.
Joan, I have been told up to 10,000 iu's is perfectly safe. When I'm sick I will take more. Watch this video, it's pretty cool.

http://www.youtube.com/watch?v=qeg-5NDyJ84
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Josie
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Re: Newbie
Reply #19 - 03/06/11 at 04:02:06
 
Hi Joan , mel and everyone Smiley

My understanding of vitamin D is that is should be supplemented alongside calcium for optimum absorbtion and activity .

The actual measurement of vitamin d levels is very difficult as it is stored in fat . Also because it is fat soluable it is possible to overdose . as unlike water soluable vitamins you don't pee out what you dont need .

The range for optimum working is relatively narrow . So both low and high levels have concerning problems attached .

The normal limits are :-
25- hyrdoxl - 37-200 nmol /l  ( 0.15 - 0.45 ng/l )
( skin genrated vitamin D )
1,25 - dihyroxy - 60-108npmol /l ( 0.24 - 0.45 pg/l )
( skin generated vitamin D coverted in the kidneys )

24,25-(OH)2D3 - is a less active metabolite produced if vitamin d supplies are inadequate . Regulation is by parathyroid hormone , phosphate levels and feedback inhibition by 1, 25. This is logical . because if you ahve enough from these sources then you don't need the other Smiley

In assesing vitamin d level , the units should be taken notice of Smiley

Calcium needs vitamin D to be absorbed . 99 % of calcium is in the skeleton . When clacium levels drop , parathyroid hormone increases . This gives several actions to preserve calcium and increase absorbtion .

Low levels , leads to  osteomalacia in adults ( rickets in children ) .

RDA's for the US :-

A new Dietary Reference Intake was made for vitamin D[33] on November 30, 2010 by the Institute of Medicine. The previous recommendation was an Adequate Intake (AI). The reference intake is based on more evidence than the previous AI. The recommendations were formed assuming the individual has little to no sun exposure. The reference intake includes intake from diet (food and beverages) and supplements.

The new reference intakes for vitamin D are:

   * 1–70 years of age: 600 IU/day (200 IU is 5 μg equivalent)
   * 71+ years of age: 800 IU/day
   * Pregnant/lactating: 600 IU/day

An AI remains for infants:

   * 0–12 months: 400 IU/day

The upper level intakes for vitamin D are:

   * 0–6 months of age: 1,000 IU
   * 6–12 months of age: 1,500 IU
   * 1–3 years of age: 2,500 IU
   * 4–8 years of age: 3,000 IU
   * 9-71+ years of age: 4,000 IU
   * Pregnant/lactating: 4,000 IU[3

Dietry vitamin d is the same as skin produced vitamin d Smiley . Interestingly it is uvb activity not direct sun exposure which allows production through the skin . So UVB on a cloudy day or in the shade allows vitamin d production . Even through non UV protective clothing .
Only 5 minutes of direct sun exposure is suffucent to stimulate production of vitamin D . Also sun cream allows enough UVB through for vitamin d production .( factor 20 and below )  So you can protect youreslf from sun exposure problems , both masto and skin cancer and continue to produce enough vitamin d .

If complete UV protection is needed dietry vitamin d is as useful as skin Smiley

Milk and diary products are whole foods . Bar vitamin c and fibre .
Other sources include :-

Supplemented cereals , breads and margarines . My olive oil margarine is supplemented Smiley

A whole egg provides 20 IU if egg weighs 60 g (0.33 IU/g)
Beef liver, cooked, 100 g (3.5 oz), provides 15 IU (0.15 IU/g)
# Fish liver oils, such as cod liver oil, 1 Tbs. (15 ml) provides 1360 IU (90.6 IU/ml) ????????????????????????????? Ok ??? Joan ?????

UV-irradiated mushrooms and UV-irradiated yeast are the only vegan sources of vitamin D from food stuffs.[4][36] A 100g portion provides: (regular) 14 IU (0.14 IU/g), (exposed to UV) 500 IU (5 IU/g)

Both yeast and mushroom materials, when irradiated with UV, produce vitamin D2, but it is not known whether the D2 is biologically fully equivalent to the D3 vitamin in humans.

The supplent of choice in the UK for bone protection and achieving absorbtion is :-

This is what BNF - the british national formulary which is the doctors prescribing bible here in the Uk . It is updated every 6 months . has to say about vitamin d replacemnet

9.6.4 Vitamin D
Note


The term Vitamin D is used for a range of compounds which possess the property of preventing or curing rickets. They include ergocalciferol (calciferol, vitamin D2), colecalciferol (vitamin D3), dihydrotachysterol, alfacalcidol (1α-hydroxycholecalciferol), and calcitriol (1,25-dihydroxycholecalciferol).

Simple vitamin D deficiency can be prevented by taking an oral supplement of only 10 micrograms (400 units) of ergocalciferol (calciferol, vitamin D2) or colecalciferol (vitamin D3) daily. Vitamin D deficiency can occur in people whose exposure to sunlight is limited and in those whose diet is deficient in vitamin D. In these individuals, ergocalciferol or colecalciferol in a dose of 20 micrograms (800 units) daily by mouth may be given to treat vitamin D deficiency; higher doses may be necessary for severe deficiency. Patients who do not respond should be referred to a specialist.

Preparations containing calcium with colecalciferol are available for the management of combined calcium and vitamin D deficiency, or for those at high risk of deficiency (see also Osteoporosis and Calcium Supplements).

Vitamin D deficiency caused by intestinal malabsorption or chronic liver disease usually requires vitamin D in pharmacological doses, such as ergocalciferol tablets up to 1 mg (40 000 units) daily; the hypocalcaemia of hypoparathyroidism often requires doses of up to 2.5 mg (100 000 units) daily in order to achieve normocalcaemia.

Vitamin D requires hydroxylation by the kidney to its active form, therefore the hydroxylated derivatives alfacalcidol or calcitriol should be prescribed if patients with severe renal impairment require vitamin D therapy. Calcitriol is also licensed for the management of postmenopausal osteoporosis.

Paricalcitol, a synthetic vitamin D analogue, is licensed for the prevention and treatment of secondary hyperparathyroidism associated with chronic renal failure (section 9.5.1.2).

Important. All patients receiving pharmacological doses of vitamin D should have their plasma-calcium concentration checked at intervals (initially once or twice weekly) and whenever nausea or vomiting occur.

Symptoms of vitamin d overdose :-

Side-effects

symptoms of overdosage include anorexia, lassitude, nausea and vomiting, diarrhoea, constipation, weight loss, polyuria, sweating, headache, thirst, vertigo, and raised concentrations of calcium and phosphate in plasma and urine ( BNf 2011 )

Low magnesium can accompany low calcium and should be treated alongside low calcium . ( BNF 2011)

Normal values for calcium are :- 2.20 - 2.67 mmol/l ( 8.5 -10.5 mg/dl ). Again both low and high levels can cause trouble . ( Kumar and clarke clinical medicine 6th ed , 2008 )


I hope this clarifies things .
Hugs
Josie xxxxxxxxxxxxxxxxxxxxxxxxx
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starfish
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Re: Newbie
Reply #20 - 03/06/11 at 05:33:20
 
Missybean-in '09 I was at 15 and after taking the D since then it is 32. He wanted to continue on that for a while and check again. It definately helped me to feel much better!
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Joan
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Re: Newbie
Reply #21 - 03/06/11 at 06:08:03
 
Josie,

I'm not a medical person, so comprehension can be spotty at times, but thank you for clarifying a lot.  I've read articles that say D2 is as good as D3 and articles that say it isn't.  However, I haven't found anything that would indicate whether it is as good in people who have problems digesting/absorbing foods, as many of us do at times.  

Everything I've read today does say to try one of them and then have levels checked a few weeks later to make sure it's working.

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Reply #22 - 03/06/11 at 07:12:21
 
Josie, thanks for the info. I have to say though I don't agree with RDA of Vitamin D. I really wonder if the reason why I don't absorb vitamin D is because I'm low in magnesuim and/or I have some kind intestinal problems absorbing it. I frequently have steatorrhea ( which I have been told is a sign of my body not absorbing fats ).
Melissa
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Josie
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Reply #23 - 03/06/11 at 10:32:20
 
Hi Mel ,

Streatorhhea  is also a sign of a gall bladder problem Smiley

I understand , they are the most up to date guidelines I could find . I would say that a balance is important . so I would take calcium levels as a guide of adequate vitamin D intake .

Please just bear in mind high levels are as concerning as low of both vitamin D and calcium ( wikipedia - Vitamin D ) and it can cause overdose as the body will store whatever you take over your recommended daily amount

Magnesium levels need to be stable as low levels affect potassium levels and both can cause heart irregularities . if your magnesium is consistantly low a EKG ( heart trace ) would be wise . It is also involoved in asthma. It is used as a treatment IV in asthma not responding to nebulisers .

cealics and other bowel conditions can give problems with absorbtion . I would take calcium levels as my sign of inadequate or adequate intake Smiley

much love

Josie Smiley
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Re: Newbie
Reply #24 - 03/06/11 at 13:25:37
 
Josie good info! So, I should probably ask for a magnesuim level huh?
FUnny you should mention, gall bladder. I had gall bladder pain as a teenager and then finally at 19 the gall bladder attacks were so bad, my mom made me go to the doctor and I had all kinds of test. Ultrasound relieved no stones and I had some kind of other test where they injected some radioactive dye and this big circle thing came down over me and it watched the dye go through my liver and gall bladder. They told me I had a small restriction in the flow of bile and if the pain continues see a surgeon. I followed a low fat diet and the pain went away. I have gall bladder pain really bad maybe  twice a year now. After the birth of my secound daughter, it started bothering me again and I was having steatorrhea really bad I saw a new GI doc, he told me to take fiber and sent me on my way. I fired him and went to another doc. I never got an answer but I called a naturopath I used to see and she told me to take digestive enzymes with ox bile in them. I think it helped, but by then things had calmed down.
Melissa
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Re: Newbie
Reply #25 - 03/07/11 at 22:37:37
 
Sorry it took me so long to thank everyone for there help. I have been so very ill and had to go to ER. I had fever and chills and diarhea and went to ER and of course I told them I had TMEP and they said WHAT? and I said Mast cell disorder and they looked at me like I was making up a disease. THey gave me 3 bags of fluid and sent me on my way. I didnt even feel better but they couldnt find anything wrong so they guessed it was a virus. So here I am 4 days later and feeling a little better but still stomache issues........and I haven't eaten but a little rice last night.
 Ramona how can I find out more info on the specialty docs in my area? What is the NIH?
  I will be checking out the book missy suggested soon.
 
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Re: Newbie
Reply #26 - 03/08/11 at 04:11:49
 
Shawna, I sorry you have been sick. Hope your getting better.
Hugs!
Melissa
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Josie
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Reply #27 - 03/08/11 at 06:23:55
 
Hi Shawna ,

many hugs xxxxxxxxxxxx We have all been there . Try and hold what information you can Smiley I have had stroppy nursing sister annoyed she had to have me stay because i had no epi pens at home ( a bad run ) .

In the mean time say you have a form of mastocyctosis and direct them to the videos on you tube Smiley

Im in the UK so ill leave the doc stuff to one of the others .

The fluids will have helped replace what had shifted Smiley

What antihistamines and other meds are you on ? Do you struggle with any foods or medications ?? what happens ???

Sorry about all the questions Smiley . I dont know what you know about temp ??  The way to see it is that it is putting chemicals into your system which are giving you symptoms . So blocking / manging those chemicals is the way to control symptoms and looking for your triggers is the way to reduce the amount of chemical sent into your blood .
As a guide :- from mast cells ( TEMP )
Histamine - flushing , diarrhoea , vomiting , bowel and tummy spams , swelling ( loss of fluid ) in any area with a menbrane :- mouth , nose , throat , stomach , bowel , anus , rectum , lady bits , lungs . hives on the skin . Fluid loss leading to dizzy , light headed , fast heart , blood pressure down ( or up )
prostoglandins - flushing , spasma

You inborn immunity - compliment - activates mast cells by its own route . Also :- blood vessels porus = swelling , fluid loss , and smooth muscule contractions .

I know this seems so scary and dauting to read . But knowing why you are feeling yucky will help you Smiley

It is always important to remeber other things that can give mast cell symptoms :- food poisioning , virus's , bacteria . Docs will dib for virus if they can't find the cause . There is a really good emergency protocol on the mastocyctosis website . which you can give them . It will help them settle down the mast cells , hitamine and other things whilst they look for a trigger Smiley

sometimes its obvious . Others you wont know . But all that matters is being well .

many of us find virus' or infections will trigger us so the docs are kind of right .

You may have a more - all body form of mastocytosis , BUT it could also be that you are not on a good ix of meds to control the mast cells and the chemicals and when you get on the right mix of meds you will be much better and not being subjected to so many histamine effects .

You have rare form of a rare condition , so you are kind of rare squared xxxxxxxxxxxxxxxx BUT , as long as you can direct the docs then its ok . With something rare , you have to think about docs a little differently . what will amke them a useful doctor for you will be if they are willing to learn and in the immediate treat you as a mast cell patient . apart from my specalist specialist . I have to allow all doctors to get up to speed . even my ED consultant uses the vids on you tube xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

For very poorly times , you need to carry that info with you Smiley

I hope your tummy settles

many hugs
Josie
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Re: Newbie
Reply #28 - 03/10/11 at 20:08:39
 
Hi Shawna,
Im sorry its taken me this long to answer you, I was a bit under for the last 2 days (My own fault, I had a wonderful 6 good days in a row and I over did it LOL).
ok I dont know where you live but there is a thread here on Drs.. look under that first. You will need to get your primary Dr to write a letter for you stating you are under his care for this, what it is (abridged version) and what to do for you in case of emergency. Later on I want you to look in the Emergency thread here and start putting together a notebook for you to grab in an emergency. It has helped me so much!!
I hope youre feeling better soon
Hugs
Ramona
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