Week One 9 MG Budesonide Report

[drdebc]

From day one, the changes were amazing! I sleep 7-8 hours and I wake up feeling great! In contrast, I used to need 9 hours, sometimes a nap, and felt tired with "brain fog" when I awakened.

I had surgery, 6 weeks ago for a torn meniscus (right knee) and to shave the knee bone (osteoarthritis). Despite physical therapy, last week there was so much pain and inflammation, they planned to drain the fluid. The inflammation was gone after taking the Budesonide two days! I saw the surgeon yesterday. He gave me some home exercises and told me I need to take L-Glutamine.

The gastrointestinal MD that prescribed Budesonide as a result of a scope and colonoscopy-MC- also prescribed Prilosec because of inflammation of the stomach. I have no symptoms of that! I refuse to take Prilosec. I will have a consulation with my primary holistic MD on July 8. Since she does not administer the 15-hydroxyvitamin D serum level test, I will participate is the GrassrootsHealth study in order to obtain this test. I contacted Blue Cross. They said if my MD codes the Enterolab test A1 and C1, and provides the name, address and phone number of the lab, it will most likely be covered. This is an item I shall discuss with my MD at the consultation.

All of my interactions re: the gastrointestinal MD have been through his nurse. She did not like it when I told her I would not take Prilosec. I pointed out that I have no stomach symptoms and I that I have no desire to worsen my osteoporosis. When I asked about the Enterolab Stool Test, she acted like I was crazy. She pointed out that the blood test showed I did not have celiac disease and a peanut allergy. I suspect that it will be a battle to slowly taper down the Budesonide. I am to see the gastrointestinal MD after two months of Budesonide. I am to call the nurse after the first month. Depending on how I am doing, the dosage might be lowered to 6 MG. I am considering not revealing how well it is working so I can stock pile this med.

I made one food screw up yesterday. I was on the go, starving (and forgot to pack good snacks) and thus went to a shake house that sells Herbalite smoothies. On 4 other occasions they made it with Silk Rice Milk and a scoop of protein. I had no D problem. This time, I forgot to specify rice milk. They made it with soy milk. I figured, this will be a good test. Immediately, the D occurred. Now I know I have a soy issue.

The only negative issues I am experiencing since Budesonide are foot and leg cramps and a stuffy nose. (I have chronic rhinitis). I am going to take a Claritin reditab. Maybe it will help. I used to have foot and leg cramps. They lessened tremendously after I took the Metagenics Ultra InflamX . I know it is recommended to discontinue herbs, vitamins, minerals while on Budesonide.
re: UltraInflam X "a medical food formulated to provide specialized nutritional support for patients with inflamatory bowel conditions, such as ulcerative colitis and Crohn's disease. Provided in a low-allergenic-potential rice protein base, this formula is enhanced with L-glutimine to support intestinal mucosal cells and a special phytonutrient blend of ginger, rosemary, and tumeric. Ginger and rosemary help to support healthy eicosanoid and cytokine metabolism, while tumeric extract has been shown in research to inhibit the activities of a wide variety of compounds implicated in pain and inflammation."

Here is my question: Would it be harmful to take Ultra InflamX while on Budesonide?

Thanks to All of You!
Deb

[tex]

Hi Deb,

Regarding the nurses comment about the blood test results, it's amazing how much faith mainstream medical professionals put into the worthless celiac screening blood tests, while at the same time refusing to recognize the value of much more accurate and more sensitive tests such as the stool tests offered by EnteroLab. It's even more amazing that they feel obligated to make irresponsible assumptions about the tests so that they can make totally unjustified statements such as, "the blood test showed that you do not have celiac disease". That statement cannot be made, based on a negative test result. All that the negative result shows is that the particular sample that was tested did not show a positive result for celiac disease. Period. It most definitely did not prove that you do not have celiac disease. It did not even rule out the possibility that another sample submitted 10 minutes later (or a day, or a week later) might show a positive result.

And the biggest problem is that such an attitude ignores the ridiculously low sensitivity of the blood tests, and the extremely poor record they have accrued for detecting celiac disease. It's a primary reason why the average time from the onset of symptoms until an official diagnosis of celiac disease is handed down to the patient is still 9.7 years in this country. That's a pathetic record. They desperately need a screening test that actually has some value. But like most doctors who use the current testing methods, she does not understand that the tests cannot rule out celiac disease — they can only confirm it.

Here is my question: Would it be harmful to take Ultra InflamX while on Budesonide?

As long as the product does not contain any ingredient that causes you to react, I see no reason why it cannot be safely taken along with budesonide. Your body will probably let you know if something about it isn't copacetic. I hope that your doctor will agree to code the tests so that your insurance will cover them. Good luck with this, and thanks for the update.

Tex

[drdebc]

Thanks, Tex

I do plan to let my primary holistic MD know about my telephone encounters with the gastro nurse as well as the fact that I will have not see the gastro MD for two months. I got better service than that when I had Kaiser insurance. Blue Cross is supposed to be much better. It costs twice as much.

My primary is on vacation this week. I called yesterday to see if they provided the Vitamin D test you recommended. Apparently they don't (the nurse did not know what I was talking about) so I joined the study at grassrootshealth and ordered a blood test. I will also share that information with my primary MD. She already noted in my records that she suspects a D deficiency. I was to have another series of blood tests on Friday. I cancelled that until I consult with her on July 8. I feel fairly confident that she will order the stool tests for me. She is very conscientious and I know she will read your book cover to cover.

UltraInflamX medical food is gluten, soy, dairy,egg,nut, tree nut, fish, shellfish, color, artificial sweetner and flavor free. I mix it with water. It does not taste too good (I use pineapple banana), it is expensive and not covered by insurance. However since my MD prescribed it, I can take it off my tax. I have recommended it before on the forum and one other member is taking it.

[Gabes-Apg]

Deb,
I am taking the orthoplex mag opti, similar formulation, both are made in aus.

When I was first Dx'd and healing, I could not have tolerated a supplement with that many ingredients.
4 years later I am ok with the blend.

The entocort may mask if you are having mild reactions. Also keep in mind that good quality gut healing will not start until all triggers are removed and you are off the entocort.
IMO, Taking an expensive supplement with gut healing ingredients is a waste at this point.
Also keep in mind that your ability to absorb the nutrients of the supps you consume is reduced while the gut is inflammed. The quick reaction to the soy milk is an indicator of high inflammation.

Value for money far better results from using, lingual vitD3, and magnesium oil spray
The spray is fantastic for joint/muscle aches. Cheaper and more effective than oral magnesium supps.

If you think there is histamine reactions as well, high doses of magnesium, Vit C, zinc is a natural way to reduce the histamine reactions.

[Gabes-Apg]

PS - keep in mind that you can not speed up the healing process per say.

you can optimise gut healing, by following low inflammation, balanced histamine, gut healing eating plan.
there are some supplements like L-glutamine that can help this.

Experience thus far is that things like L-glutamine, or pro biotics only assisted about 20% of people (happy to be corrected if this estimate is too low) early days of healing, not many can tolerate them.

Once you figure out your eating plan, stick with it for months. Dont rush trying to add new food items.

[drdebc]

I found a USA source for magnesium oil on Amazon. I will call my local herb store tomorrow to see if they have it. If not, I will order it.
RE: D3, I also found a source for the lingual version online. It is for 5000 mg. Is that the dosage you take? I am going to wait to get the D test and the results. Thanks so much for that link. My knee surgeon recommended the Glucosamine for my joints. It will be great if it helps other things! He recommended 500 mg X 3 per day. I have a vitamin website through my insurance. I will order it from them. (this company, Puritan Pride is reasonably priced and is gluten free) I used to take a ton of vitamins and I have always been happy with this company.

A wacky thing that does help my toe cramps is to put a toe separating thing between my toes. I don't know how to articulate what it is. They sell them in the USA to separate the toes when one is painting them. When I get the cramps, my toes stick together.

You could be correct re: all the vitamins in UltraInflamX. I had not thought of that.

This journey has been over 30 years for me. I am praying a lot. I want to stay in remission the rest of my life!

Thanks again,
Deb

[Gabes-Apg]

Deb
for my lingual Vit d3 products the dosage is in iu, not mg.
the forte version of my Vitd3 drops, has 1000iu per drop.
the other version has 300iu per drop.
When the gerd was bad, i was taking 5000iu per day minimum.

again glucosamine is fantastic for joints, but may not be tolerated well while your gut is inflammed and in reactive MC mode.
If you reduce the inflammation, heal the gut, take vit d3, magnesium, calcium, alot of the issues with joint pain will improve.
again, taking the glucosamine while there is a major inflammation battle going on in your gut, will not be as effective.

Alot of vitamins are now gluten free, that is the easy part, the main thing to look for is if they are SOY Free. Soy is a cheap, very commonly used stabiliser/inactive ingredient for most vitamins. especially liquids/lingual versions
Confirming if a product has Soy in the inactive ingredients is not easy (even in Aus with our super tough labelling laws)

keep in mind that soy also has about 30 names - i have this list typed out and in my wallet
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=736

Focus on 'fixing the gut' for now. alot of the other issues will improve once the gut is healing.

[drdebc]

Do you think I should take d3, magnesium and calcium while my gut is healing? I have absolutely no issue taking the magnesium chloride oil. The nasty cramps are acute and thus I need this immediately. I am just wondering if I should hold off on everything else until I finish the generic of Endocort. I also think the D test result will be very handy. And thanks for the soy list. I too shall print it out. Since I order most vitamins online, it will be by my Macbook Air.I just printed it...OMG I LOVE tuna!
thanks again,
Deb

[Gabes-Apg]

As i mentioned in my email the other day;

Low inflammation, good gut healing eating plan -(no spices (ie bland), well cooked veges, good proteins) minimal processed or pre-prepared meals
high doses of Vit D3 and magnesium (use oil if you are D dominate)
add in the Vit C if you want to minimise histamine issues

get a few months of good quality healing happening before you include anything else.
(double check tinned seafoods for soy..)

if time through the week is an issue, do a cook up on the weekend - stews, casseroles, made with home made bone broth, Home made bone broth has gelatin for leaky gut healing, and 3/4 of the essential amino acids your body needs

when cooking veges for dinner, cook extra, and for breaky the next day have warmed veges with some eggs or other safe protein
(reheated veges is 'bubble and squeak, Prince William and Princess Kate had this for one of their courses at the wedding meal so it is a meal fit for royalty!)

[drdebc]

You are a Wealth of info. Thank you SO much!

My eating habits are boring. I have low fat Daisy cottage cheese for breakfast, hummus and non-gluten chips mid day, dinner tonight was two plain grilled free range chicken legs, a small sweet potato with coconut oil and a salad of red onions, peach, tomatoes (no dressing). This appears to work for me. Boring but effective. I also have almond butter, celery for snacks on occasion. When I need a sauce, I use Veganaise with grape seed oil (example on shrimp as a cocktail sauce).

Red wine has always been a no no. I am allergic to sulfate. I discovered the Austie Yellow Tail wine without sulfates. In a flare up, that does not even cut it. However tonight, I have enjoyed wine spritzers-Yellow Tail Cab and seltzer water. Yum! I hope I can still tolerate this when I am weaned off of Entocort generic.

I have some Vit C. I shall take it after I check the ingredients. The main changes I note since starting the generic cortisone are a stuffy nose and a cough. I experienced both of these issues in my 30s when I started getting allergy shots. It appears that lowering my immune system is bringing them back to the surface.

Time is not an issue...We are retired. However, I detest over cooked veggies. So, we enjoy soups like turkey vegetable which we prepare using frozen veggies and free range ground turkey. I seem to do better when I focus on protein. Also, I am starting to have an organic apple a day. The fish we eat is fresh and frozen. I used to eat canned tuna fish on occasion. However, thanks to your report that will be gone.

I wish William and Kate the best. However, overcooked veggies don't work for me.

I wish you a speedy and life lasting recovery.

Thanks again, dear angel,

Deb

[Gabes-Apg]

The salad would be an issue for many here.

I lived on raw vege salads, fruit, frittata's filled with grated veges, for years before mc.
If you are sure it is not causing issues, enjoy!

[drdebc]

I visited my local herb shop and purchased Magnesium Gel. It is magnesium chloride. I have applied it to my feet, toes, hands and fingers for 2 days-leaving it in until it is absorbed. I also applied it on the knee that had surgery. It is working GREAT! Only slight cramps when I woke up this AM. The cramps used to wake me up throughout the night!

I also purchased NOW brand Glucosamine 500 X 3 a day after carefully checking your NO ingredient list. It checked out fine. I am also taking my Puritan's Pride Time released C 1000 mg. It also checked out fine. Finally, I am taking 6 mg fast dissolve Melatonin at bedtime.

I am okay with raw veggies in moderation. The key IS bland bland. I also found a green veggie I like to overcook-boiled okra.

I am now able to have one glass of red wine but no more.

I am bent and determined to achieve perpetual remission! I have a board on Pinterest about our disorder. I plan to add to it as I learn more. I will add a pin about magnesium gel and spray. Here is the link: http://www.pinterest.com/drdebc/collage ... ymphocyti/

I would love to have your input as well as Tex's and everyone else's.

Thanks again,
Deb

[Grahm]

Could someone please point me to the ingredients that we need to make sure aren't in our vitamins. Thanks, Connie

[tex]

Connie,

They're basically the same ingredients (or derivatives of them) that we have to avoid with our diet. IOW, we each have our own personalized list of ingredients to avoid, that applies to anything we ingest, including prescription medications and supplements. You can review an extensive list here, but remember that not everyone has to avoid all of these, and some of the items on this list are not always made from ingredients that cause us to react. Sometimes, if we can't be sure about the source of an ingredient, we have to call the manufacturer to verify what it was made from. They should all have an 800 number listed for that purpose.

Tex

[Gabes-Apg]

Connie,
I check everything for my major triggers; lip balms, toothpaste, face cream, hand cream, etc.

I react way more to soy than gluten. I won't even buy candles where soy is the main ingredient.