Any choice but Entocort?

[lisaw]

I have gotten significantly worse in the last month. Since diagnosis almost 2 years ago, I've been GF, and it was generally just morning D. Now, I am waking up in the middle of most nights with D, that keeps me up for an hour or two, then I still have it in the morning when I get up. I am exhausted. I went dairy/soy/egg free several weeks ago, with no improvement yet to GI, but significant improvement to joint stiffness. In fact, my stomach is getting worse, with more nights up. I also took out nuts and nightshades a few days ago. I am pretty thin, and have been eating a lot to maintain, but am still dropping weight. I can't afford to lose much more, and think I will need to go on Entocort.

Is it possible to continue to test foods while on Entocort, and symptoms are masked? What is best way to handle that?

[tex]

Hi Lisa,

That's encouraging that your joint stiffness has decreased, but I'm sorry to hear that your GI issues are worse. Since you appear to have eliminated the most likely suspect foods from your diet, I wonder if mast cells/histamine could be causing your GI issues. Ordinarily, I would question whether trace amounts of gluten might be sneaking into your diet, but your absence of joint pain should rule out that possibility.

Histamine does not contribute to joint pain, but it can certainly cause GI issues, so that makes it a prime suspect at this point in your recovery. Have you tried any antihistamines? Many members here who have found themselves in a similar situation have discovered that one or more antihistamines can work as well as Entocort to bring remission from D. Some members find that a non-drowsy antihistamine each morning, and Benedryl at bedtime, for example, can bring prompt improvement (if histamines are the problem).

If an antihistamine helps, then that's an indication that you may need to avoid (or minimize) high histamine foods, at least long enough to allow your gut to heal. You can read more about how mast cell and histamine problems are associated with MC (and how the problem can be treated) at the following links. And some of the articles at these links contain references to additional research articles that can provide more detailed information, if you are interested.

What are mast cells?

How are mast cells associated with microscopic colitis?

How do I know if mast cells are causing problems for me?

How are mast cell issues treated?

If you do decide to try Entocort, you will find that it will typically mask at least minor food sensitivity issues. That means that it's usually not practical to attempt to test foods until the dosage has been weened down to a relatively low amount, and final diet tuning cannot be done until all of the budesonide has had at least several weeks to clear the system.

Tex

[lisaw]

Hi Tex:

My joints are not 100%, but have come a long way. I only started having joint issues early this year. Couldn't taking dairy out be the reason for improvement since I was already GF? I've also wondered if it's just the warmup in weather causing improvement, as they can get worse when cold.

I've got no idea if I've got a histamine issue. I don't get any non GI reactions, though I know you don't need to, to have histamine issue. I now have constant gurgly stomach which if also fairly new for me. I can't eat anything anymore without gurgling. I could try Allegra/Benadryl and see if any improvement. How much improvement and in what timeline could I expect if that is contributor? Hard to imagine significant improvement from that alone. I am also going to try water kefir, have some fermenting now, though I know that is higher histamine. It seems smarter to try antihistamines first and see if I get relief, and if so, leave the water kefir out if I feel I have histamine issue. How long does it take most people to see some progress from diet changes? I realize results will be different.

Thank you.

Lisa

[lisaw]

I've looked up histamine rich foods, which include bananas and avocados, which I've been eating tons of recently. Not sure what else I'd eat, to fill me up and add calories if had to reduce those, as there are so few foods other than protein that I'm eating. Already eating lots of sweet potatoes and squash. Isn't there a test for histamine level?

[tex]

Couldn't taking dairy out be the reason for improvement since I was already GF?

Yes, casein can cause arthritis-like symptoms. It causes me to have osteoarthritis effects in some of my finger joints, for example (at least it did before I eliminated it from my diet).

How much improvement and in what timeline could I expect if that is contributor?

If histamine is a problem, you should see obvious improvement within a few hours after taking an antihistamine.

Isn't there a test for histamine level?

A serious mast cell degranulation event involves not only the dumping of copious amounts of histamine (and other inflammatory agents), but also the release of tryptase enzyme. I'm not aware of any tests that will measure histamine directly. Allergists typically try to detect such reactions by measuring tryptase levels in the blood.

After a mast cell event, the tryptase level in the blood typically peaks approximately 2 hours later, and then it slowly decays. If a blood draw is done when the tryptase level is near its peak, the elevated amount can be detected, and a mast cell issue can be diagnosed. But outside of that relatively short window of opportunity, tryptase levels will remain generally within a normal range, and there is no other practical way to detect a mast cell degranulation event (that I'm aware of).

Note that not all high-histamine foods are equal. Histamine production/generation/content of fruits (and most other foods) is a time-dependent event. When bananas are just barely ripe, for example, the histamine level is not especially high. But as the banana continues to ripen, the histamine level climbs rapidly. I can tolerate bananas that are not overly ripe, but I avoid them after they ripen some more. After a few more days, the histamine level becomes sky-high.

I can eat chicken soup (either fresh made, or promptly frozen) that has been in the refrigerator (after thawing, if frozen) for about 24 hours or less, without any problems, but if it has been sitting in the refrigerator longer than about a day, it will typically cause me to react (due to the elevated histamine content).

Tex

[lisaw]

What is the difference between histamine rich and histamine producing foods? Thanks for pointing out the ripeness factor. Is this different than with food intolerances, in that most people can have some and be fine, but not large amounts? I'm just down to the bare bones with food, so am really at a loss of what to replace those with. White rice, and maybe add white potatoes back, even though I've been trying to avoid nightshades. Not great choices. I will have to try and determine if histamines are affecting me.

[tex]

Histamine-rich foods contain large amounts of histamine, whereas histamine-producing foods trigger the degranulation of mast cells. Many medications also trigger the degranulation of mast cells.

We don't necessarily have to avoid all high-histamine foods — we just have to limit the total amount in circulation at any given time. The problem is that MC tends to suppress the production of diamine oxidase (just as it suppresses the production of many digestive enzymes). Normally, diamine oxidase purges the body of unused histamine that remains in circulation in the blood. But when diamine oxidase if deficient, histamine numbers can build up, and if the level gets high enough, it can exceed the threshold at which a reaction is triggered.

A certain amount of histamine is necessary for certain digestive functions (such as prompting the production of gastric acid when we begin to eat, for example), so we can't do without it. But before our gut heals, if the level becomes excessive, it can cause a digestive system reaction (including gurgling, diarrhea, etc.).

Tex

[DebE13]

I had nocturnal D and it can be alarming to have issues when you are't even awake. I found entocort to help control that. I have been on it since February of 2012 and am still aiming at managing through diet alone someday. Others have been able discontinue much sooner. I am taking 3mg about every 5th day and it took a while before I could get to that point. It doesn't mask all sensitivities and I'm finding foods now that are problematic that weren't when I was taking a higher dose. For me, entocort gave me relief and reprieve from some nasty issues. The road to better health has been a bit long but all the effort has been worth it.

[robinc2525]

Tex, just a question about your comment "MC tends to suppress the production of diamine oxidase...". How come there isn't more talk of taking the diamine oxidase enzyme in order to properly handle the histamines? Have people tried it and it doesn't work as well as taking an antihistamine?

[tex]

Some people use Histame, which is a diamine oxidase supplement, with mixed results. Rather than supplementing DAO, some people try to prevent histamine levels from getting high in the first place, by using a mast cell stabilizer, such as Gastrocrom. Some use both.

There are probably various reasons why there isn't more interest in this topic. Histame is not easy to source in this country, and Gastrocrom requires a prescription. Doctors aren't generally very familiar with either one. Side effects can be a problem, and apparently few people report really good results.

There's a need for some serious research on this topic. I have a hunch that this line of treatment may come into its own eventually, as more researchers recognize the extent of the need for reliable and more detailed data.

IOW, after beating around the bush for a while, I have to admit that I don't actually know the answer to your question.

Tex

[robinc2525]

Thank you for your educated guesses :)

Robin

[Leah]

HI Lisa.
It does sound like things are a bit out of control. So sorry. I take antihistamines and they do help me. I found that out by simply taking a double dose of Allegra one day and by the next day, I had a norman! BUT at that point in my recovery, I was already down to one soft BM a day, so i knew I was absorbing the drug and it was easy to see results. You can try it and see. You've got nothing to lose.

I am not a drug pusher, but I am also one of us who took Entocort when I was at my worst and it helped within days. I just ate a very freshly cooked menu with the main offenders taken out while I was on the drug. I was down to a third of the original dose within 4 months. At that point, I was able to "test" foods and see reactions more easily. That's when I realized that peanut butter was giving me problems ( but I was still able to get the inflammation down while eating it), so if you do go on Entocort, just keep the diet simple and don't worry about fine tuning until you wean down the dose.

Good luck
Leah

[lisaw]

Thanks, Leah. I will be starting on Entocort shortly. That's what I was thinking- that it really only made sense to keep out the primary offenders gluten/dairy/soy/eggs, and not worrying about anything else until down to lower dose.

Deb, one every 5 days does not seem bad, though I know you're frustrated if you want to stop all together.

Lisa

[Leah]

Hi Lisa. I didn't say those were the ONLY foods that should be omitted. I also took out all RAW FRUITS AND VEGGIES, large qualities of sugar,coffee, tea, legumes. acid foods like citrus and tomato. These are all very irritating on an inflamed gut. The good news is I was down to one BM a day within a week!

Let us know how it goes.
Leah

[lisaw]

Yes, I guess I wasn't specific enough, Leah-pretty much already have most raw veggies and fruits out, legumes and tomato. Already don't have much sugar, but unfortunately still lots of tea. So, I guess I'd be cutting a little more than the basics:) I meant that maybe I wouldn't eliminate nuts, and possibly some white potatoes while on the higher dose, until later when I can test. It is encouraging to hear your story.