Need some help.... In a flare....

[grhandlan@comcast.net]

Hi guys, needs some help.... I have been in a flare for over 3 weeks... I think the cause that derailed me was- Had a stressful week, ate too much sugar, and tried to increase my Methyl-guard B vits cause I was "fatigued"... Bad Idea!!! Here is my history..
Diagnosed in 2016.... Took Budesonide for about 5 months with a slow wean. Did well after this. Introduced new food slowly... did well until Dec 2017 started having body ache symptoms... no WD. Did Enterolab testing.... results below.....

.Quantitative Microscopic Fecal Fat Score 1328 Units (Normal Range is less than 300 Units)

Fecal Anti-gliadin IgA 249 Units (Normal Range is less than 10 Units)

Fecal Anti-casein (cow’s milk) IgA 45 Units (Normal Range is less than 10 Units)

Fecal Anti-ovalbumin (chicken egg) IgA 26 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 29 Units (Normal Range is less than 10 Units)

Mean Value 11 Antigenic Foods 28 Units (Normal Range is less than 10 Units)

While all of the foods tested can be immune-stimulating, the hierarchy of reactions detected were as follows:
Food to which there was no significant immunological reactivity:0
Food to which there was some immunological reactivity (1+):
Rice
Chicken
Beef
Pork
Cashew
White potato
+2 reactivity
Oat
Tuna
Corn
Walnut
+3.... Almond
Found I had gluten hiding in the coffee I was drinking.
Soooooooo... Got rid of that. Re tested 1 year later.....


Quantitative Microscopic Fecal Fat Score Less than 300 Units (Normal Range is less than 300 Units)

Fecal Anti-gliadin IgA 19 Units (Normal Range is less than 10 Units)

Fecal Anti-casein (cow’s milk) IgA 23 Units (Normal Range is less than 10 Units)

Fecal Anti-ovalbumin (chicken egg) IgA 15 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 10 Units (Normal Range is less than 10 Units)

Mean Value # Antigenic Foods 13 Units (Normal Range is less than 10 Units)

Mean Value 11 Antigenic Foods 13 Units (Normal Range is less than 10 Units)


Food to which there was no significant immunological reactivity:
Corn
Rice
Beef
Chicken
Pork
Tuna
Cashew
White potato

Food to which there was some immunological reactivity (1+):Oat
Almond

So in January of 2019... I was feeling ok, tests look good Vit D level 88, B12 ok..... However still a bit fatigued at times.

Then ~1 month ago I am in a flare up. WD is down now to ~5day. Still taking B6, ReMag, Vit D. Cramping is less, have fatigue and muscle aching....... No significant weight loss......
Don't want to go back on steroids if at all possible.....
How long do flares last.... when should i go to GI doc? He was only helpful for meds and diagnosis...

I read this forum almost everyday.... it just reminds me I am not alone and I am not crazy!
With GREAT GRATITUDE for Tex and Gabes and everyone who participates in this crazy disease....
Thank you so much Gena

[tex]

Hi Gena,

Sorry to hear that you're in a flare. As you've found, flares can sometimes prove to be very persistent. Since I've never found myself in a flare that refused to relent, I don't have any personal experience to share, but I can repeat the advice of someone who has been through this. In addition to sticking to a very basic, bland diet, Brandy says that for her, the key to breaking out of a long flare was to stop all supplements. I can see the logic in this. Magnesium especially, can prevent remission when our immune system is really hypersensitive. Most supplements can have a greater effect on the body than meets the eye. Look at vitamin D, for example: While it normally provides a big boost for our immune system, and helps us to heal, it's also a hormone. And hormonal supplements can have very adverse effects on many MC patients who are trying to achieve remission.

So my suggestion is to stop all supplements for a while, to see if that will calm down your immune system. If that doesn't seem to help, the flare might be caused by a BAM (bile acid malabsorption) problem. If that should be the case, a prescription for cholestyramine might help. Your GP should be willing to send a script to your pharmacy, since it's a relatively safe med. You'll have to experiment with the dose, since we all seem to have different requirements. At the pharmacy, insist on the original formulation from Sandoz. Most substitutes or generics won't work, especially the "Lite" versions — they're pretty much worthless for our purposes.

I hope this helps.

Tex

[grhandlan@comcast.net]

Thanks , I will stop the vit D , however when I stop the remag and b6 things get really bad....I will try just omitting the D first....see how it goes.
Thanks again Gena

[Erica P-G]

PS....you can apply the Remag directly on the skin, you don't have to ingest it, if that is a suspect. I read a newsletter from Dr Carolyn Dean and she mentioned that, just put it in a sprayer and apply as usual. The B6 shouldn't affect you that much...check inert ingredients for any triggering items. The VitD can however be an issue depending on how it was made. I found the capsule powder form worked better for me than the liquid tiny gel tabs so I will be reverting over when I am done with my current bottle.

[grhandlan@comcast.net]

thanks Erica I will check it out.

[grhandlan@comcast.net]

Having success with stopping the Vit D.... Things are not normal yet but much better. WD gone, have MC mud occasionally. When should I restart the Vit D? I don't want my levels to bottom out? It took too long to get them up there?

[tex]

I was just passing on some of Brandy's wisdom for ending flares. I'm guessing it's way too soon to reintroduce it at this point. Can you get some sun exposure? With the days getting longer now, it's relatively easy to get vitamin D from the sun, and unlike supplements, vitamin D from the sun should never cause any problems (unless you overdo it and get a sunburn).

Tex

[brandy]

Hi Gena,

I'm glad you are doing better!

What latitude do you live in? As it is warming up can you take a walk on your work lunch break or bring a folding chair
to work and sit out in the sun? Wear a hat or sun block on your face to protect the face on your skin but try to have your
arms and legs uncovered in the middle of the day for vitamin D. If you still have occasional MC mud I would not
do oral yet. I have very pale skin but I find 10 or 15 minutes between 11:00 and 2:00 pm works a charm.

[grhandlan@comcast.net]

I live near Seattle----- Vit D should be sprayed in the air from the airplanes!!!!! not much for sun until july or august....at least not consistent....... can I take it once or twice a week?

[tex]

Sure, research shows that daily doses are more effective, but even once-a-week dosing (using the same total amount) will work reasonably well.

As I recall, there are other options available for application on the skin. Check out these old threads:

Attn: Tex Vit D and lanolin

Lanolin

There are also vitamin D patches for use on the skin. They're a more expensive option, but they work. Several members who are unable to use any other form of supplementation swear by them.

Tex

[grhandlan@comcast.net]

Question about lanolin... do you need sun to make it work?

[tex]

Yes, as I recall, you do. It's like a booster for the oil that forms on your skin after you've been in the sun for a while. With sun exposure, and adequate time (before you wash it off), part of it will undergo a chemical reaction and turn into vitamin D3.

Tex

[dolson]

Gena, I can give up a lot, but coffee is something I have to consume. Black coffee is fine with me if I don't have my almond milk. I'm not a "morning person" and don't come alive till after my coffee. Can someone tell me what's "safe coffee?" I read in a scientific magazine, that when you wake up is correlated to when you came out of the womb. I was born around 6pm and that's when I come alive. Life is good and I feel like going out, painting the house, cleaning the windows, walking nine miles, etc. In the morning, it's best to let me be. My husband was born at 6am and he's alive and ready for action. He doesn't drink coffee. I've done my own little study and I ask people if they are a morning person or night person. Then I ask them what time they were born. So far people who were born in the am are morning people and people born in the pm are afternoon or night people. The only problem is when you're born at noon. You could be a morning person or evening/night person. That one has me confused.

I drink mostly Nescafe or Maxwell House. I like the old brands. Coffee is the best thing in the world and I make my own coffee unless I'm on the road and desperation sets in...Dorothy