I am new and need some advice

[DEKearley]

Hello

I was diagnosed with with MC a couple of years ago and have had numerous tests and have tried eliminating foods and taking various lotions and potions. I have managed to determine those foods that I cannot definitely tolerate and some that I think may be a trigger. Up until a few weeks ago I was feeling great and was convinced that I had turned a corner and was in complete remission. However, something has recently triggered off a flare up which has steadily got worse over the past few weeks. Two nights ago I felt dreadful (not felt this ill for about 2 years). I can cope with the upset stomach, running to the toilet etc. but the sensation of feeling like my whole body has been poisoned - weak, aching, feverish, numb tongue and general sickness is just exhausting and completely life disrupting as I don't have the energy to do anything. I was so pleased to have come across this website and forum and have read a lot of the posts about eliminating gluten, soya, eggs & dairy from the stage 1 diet. I'm not sure if I have overlooked some posts about my questions already (apologies if I have) but I was wondering what I can have as an alternative to the following foods, or if these foods are okay:

Milk (is sugar free rice milk, almond milk OK?)
Sugar & artificial sweeteners
Are oats ok?
I read someone was having corn tortilla's are these okay
Is honey okay
Is cornflour ok
Stock cubes
is lettuce ok?

.....maybe there's an extensive list somewhere?

Any help you can offer would be most appreciated.

Thanks.

[tex]

Hello,

Welcome to our Internet family. A numb tongue and the overall truly severe reaction you described may be due to a food allergy (as opposed to a food intolerance). I will admit though that I felt that way many times before I was able get my diet sorted out correctly. I'll attempt to address your questions:

Milk (is sugar free rice milk, almond milk OK?)

Rice Dream rice milk contains a tiny amount of gluten (under 20 parts per million). Most of us can tolerate it. I have no information on other brands. Virtually all of us can tolerate almond milk, provided that it doesn't contain other ingredients that cause us to react.

Sugar & artificial sweeteners

Most of us have to minimize sugar and totally avoid all artificial sweeteners, except that some of us can tolerate sucralose (Splenda)

Are oats ok?

Most of us here (including me) react to oats. It's a weaker antigen than wheat gluten, but it causes the same symptoms.

I read someone was having corn tortilla's are these okay

As long as they are made without any other flours such as wheat, barley, rye, or oats, they may be OK. However, please note that some of us react to corn (in which case they are obviously not OK).

Is honey okay

Many of us can tolerate honey as long as we don't eat too much of it.

Is cornflour ok

If you can tolerate corn, then corn flour is OK.

Stock cubes

Stock cubes may or may not be OK, depending on their ingredients. Most bouillon cubes contain ingredients that we cannot tolerate. Try to stay away from products that contain more than just a few simple ingredients.

is lettuce ok?

No, virtually every one of us reacts to lettuce while we are still recovering. We have to also avoid all raw fruits and vegetables (except for bananas). Too much fruit causes problems because of all the fiber and the fructose sugar. Any vegetables should be peeled and overcooked to make them easier to digest and the serving size should be limited in order to avoid ingesting too much fiber.

I hope that some of this is helpful.

Again, welcome to the board, and please feel free to ask anything.

Tex

[brandy]

Hi D.E.,

Welcome! If you don't have a copy of Tex's book on Microscopic Colitis I would recommend it. It is the only book on Microscopic Colitis published anywhere in the world. Link to get the book is in the upper right hand column.

You have come to the right place.

[DEKearley]

Thank you Tex ,that's a great help

[Erica P-G]

Hi D.E.

Welcome...and I hope you may have read a bit up on VitD3 levels and getting plenty of Elemental Magnesium at the same time. Along with your symptoms of an allergic reaction you also sound like you have a pretty deficient supplement level of the VitD and Mag....if you can get the VitD tested (Hydroxy 25) that would be a good start. If your level isn't close to 60 then this is a good place to start the healing focus along with diet changes.

Cheers
Erica

[Gabes-Apg]

welcome!

to expand on Erica's reply above,

if your level isn't close to 60 then

the USA measures Vit D3 differently to other countries on blood tests. double check what measurement is being used on the test results
101 to 199 nmol/l is (roughly) the equivalent of 40 to 80 ng/ml.....

the 60 that Erica refers to is the ng/ml

[tex]

Gabes is right on target. A 25-Hydroxyvitamin D level of 60 ng/ml would be the equivalent of 150 nmol/l.

Tex

[Lulybug]

I am so glad to know that there is a book on this topic. I was dx with ME last Fall. Several years ago I found that I was intolerant to bananas. I am just now coming to realize that it may be part of this disease. I was wondering why I could handle other fruits. But when I started Weight Watchers a few months ago, I was eating a lot of fruits and vegetables and my symptoms got way worse. I'm still in the trial and error phase of finding what triggers and what helps. I'm so glad for this group!

[Gabes-Apg]

Lulybug
i have been allergic to banana's since childhood

But when I started Weight Watchers a few months ago, I was eating a lot of fruits and vegetables and my symptoms got way worse.

what we have found is that too much fruit sugar can be an issue along with if you were having lots of raw vegetables then the fibre would be an trigger /inflammation causing

[Lulybug]

Has anyone tried Uceris for Mastocytic Colitis?

[Lulybug]

Has anyone found that taking probiotics helps MCE?

[T]

Sorry I cant help but it looks to me like its another disease that there has been little research done
http://www.poplarhealthcare.com/gipatho ... 2_0711.pdf


Terry

[tex]

Lulybug,

IMO the best way to treat ME is to significantly limit high-histamine foods in your diet and take H1 type antihistamines. If H1 antihistamines don't seem to help, you may need to take an H2 antihistamine (aka H2 blocker). Some patients take both for best effectiveness. With either one or both, you will need to determine the brand and dosage that seems to work best.

I would guess that if you're going to try budesonide, regular budesonide (that is, Enterocort or a generic) would be more effective than Uceris. The reason for that guess is because Uceris is designed to target the distal sections of the colon (roughly the bottom half or so, whereas regular budesonide becomes activated sooner so that it treats the terminal ileum and all of the colon. With ME, it's very likely that your entire GI tract has an elevated mast cell count, although your doctor probably didn't biopsy your entire GI tract to check for that possibility.

There's a remote possibility that the right probiotic might help, but I have no idea which one might work. There's at least an equal possibility that a probiotic may just make your symptoms worse.

Sorry I couldn't be more helpful, but as Terry pointed out, very little is known about treating this disease, especially in the offices of GI specialists around the world.

Tex

[Lulybug]

Thanks. I am just now discovering that foods high in histamine make things worse. I'm currently taking Zantac, Clarinex and Singulair. I was already on the latter two for seasonal allergies for years. The Zantac was added when I was diagnosed with ME.

I forgot to mention that my liver enzymes were elevated and was wondering if anyone else had this issue? I'm thinking its from the toxins released from the inflammation in my gut being filtered through the liver causing that.

[tex]

Elevated liver enzymes are not a particularly common problem among the members of this board, but that problem is not rare either. Are you familiar with cast cell activation syndrome (MCAS), more commonly known as mast cell activation disorder (MCAD)? Elevated liver enzymes are associated with MCAS/MCAD.

CONCLUSIONS: Hypercholesterolaemia and liver abnormalities are frequently found in patients with the mast cell activation syndrome. Hence, the mast cell activation syndrome should be considered at an early stage as a possible cause of hypercholesterolaemia and of hepatic abnormalities of unknown reason. Mast cell activation may be indicated by a reduced expression of the enzyme chitotriosidase in blood-derived mast cells as well as by an increased plasma cholesterol level.

New aspects of liver abnormalities as part of the systemic mast cell activation syndrome.

Here's some basic information, and the references cited in these short articles contain a lot more detailed information.

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?

I hope that some of this is helpful.

You're very welcome,
Tex