New to the forum; Questions

[Gabes-Apg]

Marie,
In the back of Tex's book is the wording of chef card. I used a variant of this when I spent 3 weeks in France for work. Depending on what countries you are travelling to, you may need to get them translated into some different languages.

Also, in the travel section of this forum there are a few posts / discussions about travelling, read this section.

There are loads of GF/Df options in Europe. Find restaurants that have English on the menu, find a meal that best suits, ask for sauces on the side. Meat and well cooked vege, with sauce on the side works well.

Be cautious of green smoothies, while there is high levels of inflammation, greens/high ingredient smoothies can cause more issues than benefit.
For now don't focus too heavily on nutrients, while the gut is inflammed you are not absorbing many nutrients. Your main focus now should be figuring out ingredients/meals that don't cause any symptoms, that reduce the inflammation. Keep meals plain, well cooked, not too many different ingredients.

Hope this helps.

[Leah]

Hi Marie. I was on Entocort for 6 months. The first was at full dose, the second and third were at 6 mg., the fourth and fifth were at 3 mg. and the last month i spent weaning completely off. As Brandy has said, step the dose down if you get somewhat constipated.

I don't think the gassiness is from the drug. Both sugar, fructose, and artificial sweeteners can be a problem. Even after almost there years, I still can't eat even medium amounts of fruit… only small AND I can't have melon at all…. it has natural sorbitol. it goes right through me.

Sometimes I make a small batch ( 1/2 c. worth of dry mix) of King Arthur's GF pancakes. It's the best mix out there. it'a a treat to eat three pancakes with a little real maple syrup.

I sometimes make myself a avocado omelette. The avocado's creaminess makes me not miss cheese so much :)

You're doing great. Have a wonderful trip!
Leah

[MarieBB]

Gabes and Leah,
Thank you so much for the advice and ideas. I really appreciate it. This forum is fabulous! I'm so lucky I found it.

Thanks again!
Marie

[Heady]

I had two trips this past summer. I took a small loaf of Silverhills GF flax bread in my carry on luggage and individual pkg Barney Butter on the plane. During our daily excursions in Maui I took bread,hard boiled eggs with me everywhere. I also took lg&sm ziplock bags to put ice in to take on the plane to keep my food cool during long flights.

[MarieBB]

Hi All,

Update....I've been on Entocort now for about 7 weeks. I've continued the GF/DF (GF for 5+ months / DF for about 4 months). The first 4 weeks I saw significant improvement. For the last 2 weeks or so it's gotten worse....not full fledged D, but loose, floaty, 3-5 / day. So I am thinking I should now watch Soy. I don't eat soy but have noticed soy in A LOT of foods I do eat (mayonnaise, tuna, GF/DF pretzels, etc.).

I would like thoughts on this? I don't know why I've suddenly worsened. I don't seem to be bothered by eggs....not sure what else to look for.

I will add that my job is very stressful...but I've been trying to manage the stress with more exercise, yoga, deep breathing, etc. to help manage the stress.

Any insight is welcome.

Thank you,
Marie

[tex]

So I am thinking I should now watch Soy.

I agree. Based on the experience of numerous members of this board, those of us who are sensitive to soy often tend to be extremely sensitive to it, including trace amounts in supplements, cosmetics, etc.

And of course the stress is a wild card that can trump anyone's recovery if it is significant enough. Stress can make symptoms due to an undetected food sensitivity much worse.

Thanks for the update.

Tex

[Gabes-Apg]

That is a fairly common situation in mc world. Once you remove 1 or 2major triggers, heal a bit, another item can become a major trigger.

Soy and stress have been and still are my two worst triggers.
I react worse to soy than gluten, so I had to triple check every item, not just food and drinks and supplements, check cosmetics, moisturisers, lip balms, shampoos etc etc etc
If soy is an issue for you, it is highly likely you will react to all legumes, ie chick peas etc. double check your gluten free products for ingredients linked to soy and legume.

Soy is cheap, hence why it is used in so many foods. Chips/crisps and most takeaway foods have high content of soy.

Hope this helps.
Good luck

[MarieBB]

Hi All,

I've been on Entocort now since mid August. GF/DF/SF since May. I went to 6 mg everyday in Oct. In Nov. I started 3 mg per day. Starting this week I take 3 mg. Entocort every other day. My BMs have been 90% normal...yeah! The other 10% is semi normal....but triggered if I eat something inadvertently. Such as a product with Soy.

How long should I take Entocort every other day before I switch to every 3 days? I'm trying to ease off Entocort but I don't want to relapse. So far I feel better than I have in over 2 years.

I just had bloodwork done. The inflammation markers are down and now within normal range. However, my Vitamin D level is only 28. I've been taking 2000 iu per day. Should I up that to 5000? When the sun is out (I'm in N. Texas) I will go outside....but apparently that isn't enough. How much D3 is too much? I'm also taking B12.

Thanks you! Love this forum!

Marie

[tex]

Hi Marie,

You seem to be making good progress, but it pays to be more cautious than seems necessary when lowering your Entocort dose below 3 mg per day. Most members here go slower as they get to the smaller (and more widely-spaced) doses. If your BMs are not virtually always normal while taking Entocort, that's a sign that you may not have healed enough to reduce the dose, or there may still be traces of a food sensitivity (or an unknown food sensitivity) in your diet, and either issue could trigger a relapse if you lower the dose too soon.

Many members allow at least 2, and preferably 3 or 4 weeks at each of the stages when reducing the dosage below 3 mg per day. That allows for additional healing and stabilization (and diet adjustment if necessary) before lowering the dose some more. And it greatly increases the chances of avoiding a relapse of symptoms, without using enough Entocort to cause any significant side effect issues.

I live south of you on a farm about halfway between Waco and Austin, and I take 3,500 IU of vitamin D in the summer, and 5,500 to 7,500 IU in the winter (depending on my mood and whether or not I get much sun exposure). The reason for the odd 500 IUs is because my multivitamin contains 500 IU of vitamin D.

The point is, with an IBD, our body tends to use much more vitamin D than most doctors and other "experts" realize, and if we don't take additional amounts, we can get into a deficiency situation before we realize what's happening. I was happy as a lark when my test result came back at 95 ng/ml last May, but when I had it tested again in October, it was down to 58, even though I had been taking 3,500 IU every day during the summer, and frequently working outside in the sun. I blame the drop on inflammation caused by a kidney stone issue, which eventually prompted a mediocre MC symptom flare.

Too much vitamin D would be a test result over 150 ng/ml, and a result over 100 ng/ml would be a caution sign that it might be a good idea to cut back a bit on the amount of vitamin D being taken. As far as daily doses are concerned, doses under 10,000–12,000 IU daily range are generally safe. But at that dosage level it's a good idea to order a test to check the level after no more than about 3 or 4 months. Doses in the 15,000–20,000 IU daily range are safe for a few weeks, but taking that much vitamin D for an extended period is asking for trouble. Most documented serious overdose cases involve daily doses of 40,000 IU or more, for at least several months. It's never a good idea to do that for an extended period, because it can result in serious hypercalcemia problems.

Our body apparently uses approximately 5,000 IU of vitamin D daily (without MC), so that is typically a safe dose for almost anyone who wants to improve their vitamin D blood level. At that level, it normally may not be necessary to even test our vitamin D level, but IMO it's a good idea to get a vitamin D test at least annually, just to make sure that we are not overlooking something important.

Someone who has a vitamin D test level below 20 ng/ml though, and who has an IBD, may need a higher dose than 5,000 IU per day, if they ever hope to get their vitamin D blood level up in the safe range. In your case, 5,000 IU per day should work just fine, and it certainly shouldn't be too much during the wintertime.

You're very welcome, and thank you for the kind words for the forum.

Tex