Corn allergy hell

[tex]

I've never had any prescription compounded, but one place that comes to mind is Skip's Pharmacy in Boca Raton, Florida. It's tough to find a place to get LDN compounded, but Skip's pharmacy is known nation-wide as a great place to get LDN. They apparently provide excellent service and fair prices.

Tex

[brandy]

http://www.perskyfarms.com/phpBB2/viewt ... an&start=0

http://www.perskyfarms.com/phpBB2/viewt ... n&start=15

This is a thread in which both Joe and Nancy are talking about there Imuran use. Searches will bring up more threads.
Going on memory I think Nancy was on Imuran for like 8 or 9 months but I think Joe was on it much longer.

Consider asking your doctor if it is an option for MS usage.

It is hard to say if the other drug is preventing MC remission but no matter how good it is for MS if it prevents MC remission overall it is not a good situation as you know from the toilet issues. When we are in an active flare we are not absorbing good nutrition which can't be good for MS.

[Gabes-Apg]

Stacy

you may find that once you modify the diet as per suggestions by Brandy and myself, stick with the good quality D3 and magnesium, then the small amount of corn that is in the medication may not be an issue.

regarding the multi - I would not take that for now, with the flare being so bad, he is not getting any benefit. ie he would not be absorbing very much.

I think Nancy still takes the Imuran, but still has to be fairly strict with her eating plan.
I am reasonably confident that with the eating plan changes (no dairy for now, no almonds etc), and resolving Vit D3 and magnesium deficiency, within 6-8 weeks there should be improvement, and within 3 -6 months reasonable improvement

I have multiple AI issues and resolving my magnesium deficiency improved things drastically where issues that were chronic became moderate within 6 months.

[brandy]

Yes, agree with Gabes, I would not take an oral multi now. In a flare situation the multi will just go through us. In order to get out of my 4 month flare last summer I had to eliminate all oral supplements with the exception of D3. Oral supplements are tough for us to digest when we are that ill. I can now take supplements.

I am reasonably confident that with the eating plan changes (no dairy for now, no almonds etc), and resolving Vit D3 and magnesium deficiency, within 6-8 weeks there should be improvement, and within 3 -6 months reasonable improvement

Gabes timetable is very realistic.

[Gabes-Apg]

the recommendation for the Vit D3 is not just for the MC, in the past few years there has been good research about Vit D3 being very beneficial for MS

http://www.medscape.com/viewarticle/856871

They note that low serum 25(OH)D levels are associated with an increased risk for MS and in established disease are associated with increased disability and disease activity. In addition, animal studies of vitamin D supplementation show treatment can prevent or ameliorate experimental autoimmune encephalitis, a murine model of MS.

April 28, 2009 (Seattle) -- High doses of vitamin D dramatically cut the relapse rate in people with multiple sclerosis, a study shows.

Sixteen percent of 25 people with multiple sclerosis (MS) given an average of 14,000 international units (IU) of vitamin D a day for a year suffered relapses, says Jodie Burton, MD, a neurologist at the University of Toronto. In contrast, close to 40% of 24 MS patients who took an average of 1,000 IU a day -- the amount recommended by many MS specialists -- relapsed, she says.

Also, people taking high-dose vitamin D suffered 41% fewer relapses than the year before the study began, compared with 17% of those taking typical doses.

http://www.webmd.com/multiple-sclerosis ... relapses#1

A study conducted by researchers at the University of Oxford and another conducted at the New Jersey Medical School have suggested that maintaining adequate levels of vitamin D may have a protective effect and lower the risk of developing multiple sclerosis (MS).

Another study conducted at Maastricht University in the Netherlands and others suggest that for people who already have MS, vitamin D may lessen the frequency and severity of their symptoms. More research is needed to assess these findings.

When a person has MS, his or her immune system attacks the coating that protects the nerve cells. Research suggests that a connection between vitamin D and MS could be tied to the positive effects vitamin D has on the immune system.

http://www.mayoclinic.org/diseases-cond ... q-20058258

and as we have already discussed, Magnesium is just as important. We need good levels of magnesium to utilize the Vit D3

[jlbattin]

The Bluebonnet Vitamin D3 that I take doesn't have any corn in it............it is free of all of the 8 top allergens.

[Janie]

As a newbie, I can't stress enough about eating meat or turkey alone for the first few weeks and bone broth. Slowly add a mushy safe veggie. No dairy no gluten. And make sure you use Vitamin D and Magnesium spray. Make the sprays equal 100 mg each time use it so you get an idea how much you use throughout the day. Add rice too if it agrees with him-mushy soup like rice. Everything came together after about 4 to 5 months. I lost weight and am now gaining it back. I've added things back into my diet maintaining low fiber no gluten no dairy no soy!
I hope that helps. Take it slow with food.

[StaceyB]

Thank you! He is starting to feel better today, and the color is coming back to his face. He is not thrilled that he is going to have to give up even more foods but he knows there is no choice.

I am waiting on the multi vitamin patch that I got from a bariatric supply store. It should resolve the low D and mag issues.

Does anybody know about MaxGxl glutathione precursor? He had been taking that, too. Without being able to find evidence of where its ingredients are derived, I am going to assume corn. I've been trying to find a patch or adequate transdermal delivery system, but so far no luck...

Tex, thanks for the compounding pharmacy name.

[Gabes-Apg]

I dont know about that exact product but I do know a bit about glutathione
given the flare status and very likely Vit D3 and magnesium deficiency, he would not be absorbing the product

as Brandy and myself have said in our replies - at this stage it best to minimise supplement intake to only Vit D3 and magnesium - give the body time to lower inflammation levels and for the gut/digestion to settle.

I don't think a multi vitamin patch will have enough VIt D3 and magnesium. based on the links I provided above -
Vit D3 for MC we recommend at least 5000iu per day, more if you are flaring, and for MS they talk about at least 10,000iu per day

magnesium the daily requirement is 350-400mg elemental magnesium per day, to correct deficiency you need at least 600mg per day for at least 8 weeks.

the mental and emotional aspects of this stuff is hard, its a tough gig for all of us... albeit when you feel better, not having intense symptoms, not having messy accidents, you come to love the bland, low amount of ingredients eating plan...

[Gabes-Apg]

I just looked at the ingredients of the Multi Vitamin patch - it does have 5000iu per day of Vit D3, and 500mg of magnesium which is good start. you are limited to using one patch a day due to the levels of other ingredients (ie selenium, iodine etc)

[brandy]

D3 is critical in high latitudes like Canada.

from : http://www.nationalmssociety.org/What-is-MS/Who-Gets-MS

In general, MS is more common in areas farthest from the equator.

Migration from one geographic area to another seems to alter a person’s risk of developing MS. Studies indicate that immigrants and their descendants tend to take on the risk level — either higher or lower — of the area to which they move.

This is a good discussion about the importance of vitamin D to those in higher latitudes and the relationship to IBD's. It is from the Canadian crohns and colitis website.:

http://www.crohnsandcolitis.ca/site/c.d ... amin_D.htm

Higher vitamin D3 levels will reduce inflammation. Lowered inflammation will help with healing of MC.

[StaceyB]

The patch seems to be our best bet now.

This flare is the worst one yet. He just had an attack while sleeping on the toilet :( I'm up trying to figure out what could have caused it.
It could not have been food (he ate only rice, chicken, potatoes, banana and boiled carrots yesterday).
The only likely culprit is besides aubagio is baclofen which he started taking a few weeks ago. The pill itself might contain corn ingredients (cellulose, etc.), and I think it is affecting motility, too.

This is horrible for him.

[brandy]

Yes, if things are that severe patch is best.

[tex]

Stacy,

If he's using the brand name Baclofen product, here are the inactive ingredients: colloidal silicon dioxide, microcrystalline cellulose, magnesium stearate, potato starch, povidone

The only possible issue I see would be the potato starch, if he happens to be sensitive to potato. But if he decides to discontinue use of the Baclofen, be sure to call his doctor's office to ask if he needs to wean off slowly, because withdrawal symptoms can be triggered if it's stopped abruptly. I'm not sure how long one would need to take the product before weaning becomes necessary, so that's why I feel it would be a good idea to consult with his doctor before stopping.

(he ate only rice, chicken, potatoes, banana and boiled carrots yesterday)

This may be irrelevant to his reactions, because this may just be a coincidence, but I notice a pattern in those foods — banana and carrots are high-fructose foods. And corn (the topic of this discussion) is certainly a high fructose food. Rice has no fructose, and I would assume that chicken also contains no fructose. Potatoes are a low-fructose food.

According to some claims, roughly a third of the general population has fructose malabsorption issues. For IBD patients, that percentage goes way up — virtually all of us have somewhere between mild to major fructose malabsorption problems. Any or all of the sugars can cause problems for us (because we may not be able to properly digest them), but fructose appears to be the worst. And this is probably because fructose is unique among all the sugars in that it can only be metabolized in the liver, and it does not provoke an insulin response (which can complicate/corrupt blood sugar balance. When we are unable to digest sugars in general (because of the inflammation in our gut) they pass into the colon undigested, where they are fermented by bacteria, resulting in gas, bloating, and diarrhea.

http://www.livestrong.com/article/26393 ... -fructose/

Again, I'm just thinking out loud here, searching for something in his diet that we may be overlooking. And I may be barking up the wrong tree. But if fructose is the/a problem, that doesn't mean that he has to totally avoid fructose. Similar to the problem that many of us have with histamine (mast cell activation disorder), he merely has to limit his total intake of fructose (especially high-fructose foods) in order to keep the total amount in his system below the threshold (tolerance level) at which it begins to trigger symptoms. That tolerance level is virtually impossible to predict, because we are all different, and many factors are involved. The bottom line is, please don't assume that this is the problem, but do consider it, because it certainly might be, or it might be one of several factors.

Tex

[StaceyB]

Hi, I would not be surprised if it was fructose, too, at this point. I had my suspicions about the applesauce for different reasons. One of the jars (the cinnamon flavor, which he does not eat) had citric acid listed as a preservative. The other jars with plain applesauce only listed apples as an ingredient.
I found that to be a little disconcerting.

I made a soup with chicken, and turkey and rice meatballs and he is doing okay with that and it is at least able to rest in bed. He says he feels well enough to get up later.

The baclofen he was taking (Ivax) has these two ingredients that are usually corn-based:

magnesium stereate, cellulose

On top of that, I think that the drug might increase motility

The good news in all this is I am wondering if none of the meds he tried worked because they had corn in them, and maybe they would if we could them in a transdermal form.