Yeah Dr. Lewey

[mbeezie]

Dr. Scot Lewey's blog and website are active again. He has info on his site about LC, ME and MRT. Here is what he has to say about ME under the Lymphocytic Colitis heading:

The most commonly diagnosed forms are lymphocytic colitis and collagenous colitis. However, a third form, mastocytic enterocoliltis is more common but usually not diagnosed not only because of failure to biopsy normal appearing colon lining but failure to request a special stain, mast cell tryptase immunhistochemistry stains on normal biopsies. You can read more about mastocytic enterocolitis on the separate webpage dedicated to this increasingly recognized mimic of or possiby subtype of IBS.

He also goes on to mention that a GF diet helps LC. This will be a great site to refer GIs to for information from a reputable source.

Here is the info:

The Food Doc Website www.thefooddoc.com has been revised and updated. Content is being added every several days.

The Food Doc Journal blog www.thefooddoc.blogspot.com has also resumed and a new article published on ezinearticles.com.

See http://ezinearticles.com/?expert=Dr._Scot_Lewey .

The Food Doc, LLC, PO Box 51460, Colorado Springs, CO 80949, USA
To unsubscribe or change subscriber options visit:
http://www.aweber.com/z/r/?LKysjAyMtCzs ... yMnJwMLA==



Mary Beth

[starfire]

He is good, isn't he. I just read the e-mail about the site and have it bookmarked. Haven't taken the time yet to read it.

Thanks for posting.

Love, Shirley

[Foxnhound8]

My husband is a pathologist and says it does not take any special stain to recognize mast cells in a regular biopsy.

foxnhound

[mbeezie]

Hmmm, foxhound . . . that's inconsistent with what mast cell specialists say and having a mast cell disorder myself I have read quite a bit about this. I am curious to hear what he knows about this. If that is true that is great news, but I know mast cell disorders are being missed on routine biopsies, so maybe not every pathologist knows how to correctly interpret the biopsies.

Mary Beth

[Kari]

That's an excellent source of information MaryBeth - thanks so much for posting it. Next time I see a GI I will refer him to Dr. Lewey's website!!! His explanation of MRT testing is very thorough.

Love,
Kari

[tex]

Mary Beth,

Excellent! Thanks for bringing this to our attention. I hadn't checked his site recently, because it seemed to be rather quiet there, the last time I looked. I'm glad he's back in action. I agree that he is probably our best ally for promoting this in mainstream medicine.

Regarding the comment:

it does not take any special stain to recognize mast cells in a regular biopsy

Dr. Fine can see the inflammation from MC, in most cases, during a colonoscopy exam, (without the use of a microscope), but 99.9% of GI specialists appear to be unable to do that. I even noticed those faint patchy areas of inflammation during my own colonoscopy, and I asked my GI doc what they were - he waved them off as "probably areas of a previous infection". At the time, I didn't know any better, either.

Because of that, I suspect that the claim that no special stain is needed to recognize mast cells, falls into the same category. A pathologist who really knows what he or she is doing, can probably do that, but obviously that does not apply to most pathologists, because they clearly are not demonstrating their ability to identify mast cell issues, without the use of a special stain, to make them more easily visible.

Tex

[Rosie]

My husband is a pathologist and says it does not take any special stain to recognize mast cells in a regular biopsy.

I suspect that the claim that no special stain is needed to recognize mast cells, falls into the same category. A pathologist who really knows what he or she is doing, can probably do that, but obviously that does not apply to most pathologists, because they clearly are not demonstrating their ability to identify mast cell issues, without the use of a special stain, to make them more easily visible.

I agree. In the past I have done some research on mast cells, and they are very distinctive even without special stains. They are large cells full of large granules that readily show up using most common stains. But of course you have to know to look for them. I'm reminded of a the classic attention test. A group of people were shown a video of a basketball game and asked to count the number of times the ball changed hands between teams. During the video, a person dressed in a gorilla suit walked across the court in full view. Only about 25% of those watching the video noticed the gorilla, since their attention was focused on a different task. So if a pathologist is counting lymphocytes or a measuring a thickened collagen band, they don't notice the extra mast cells. Using a special stain focuses their attention.

Rosie

[starfire]

I think Tex and Rosie are probably correct.

Love, Shirley

[jme22]

Thanks Mary Beth for the heads up! Like Tex, I had pretty much given up on Dr. Lewey's site as there had been no updates for so long. As someone who has been diagnosed with ME, I really appreciate Dr. Lewey's interest and thoroughness on the subject so I'll definitely be following his site again.

Interesting discussion about special staining of the biopsy. Like Mary Beth, I too am under the impression (from everything I've read and been told by my GI doc) identifying mast cells in a biopsy does require special staining. If mast cells are in fact identifiable without the staining, then perhaps the staining is used to help the pathologist more readily count the mast cells. As you all probably know, a diagnosis of ME depends not on IF mast cells are present but in what quantity are they present. Perhaps the stain assists in quantifying the specimen.

Foxnhound if you have more info on this issue, let us know. I'm always interested in discussions on mast cells and learning more!

One issue in Dr. Lewey's info on ME that I'm questioning: He uses the term "IBS" in describing ME. This seems confusing as he has previously advocated that ME be known as MIBD. Maybe someone can clarify and/or comment.

I'm interested in your thoughts,

Julie

[klhale]

I wish I had mast cells. All I would have to take is Zantac and Zyrtec to get well.

karen

[mbeezie]

Oh Karen, you couldn't be further from the truth. Zyrtec and zantac often fall woefully short of a good treatment. I think the diet to manage mast cells is quite restrictive. Not only is it giving up lectins like gluten, dairy and soy, but there are many other foods that contain histamine or release histamine. Additionally, the symptoms that occur when mast cells outside of the GI tract are activated are not only unpleasant but downright scary. I've had more than my share of ER visits and will do anything to avoid them.

Julie, just a WAG but maybe he's referring to it as IBS because technically that would be the diagnosis. MIBD or MCAD aren't ICD-9 diagnostic codes as of yet, but may be in the future. IBS might be the closest one could get.

I am a big fan of Dr. Lewey. It was his blog that put me on the right path with MRT and recognizing mast cells as the source of my problems. While everything might not 100% technically correct, I think he is brilliant and wish he were my GI. I tried to make an appointment with him but he will only see CO residents. I can't think of one other GI that is as on the ball as he is with MC or ME. Kudos to him for spreading the word - we need more physicians like him.

Mary Beth

[Gloria]

I wish I had mast cells. All I would have to take is to get well.

No, you don't wish you had excessive mast cells. As Mary Beth said, Zantac and Zyrtec do not adequately treat the condition. As with MC, diet is imperative in controlling it.

Here is a list of foods that must be avoided by someone who is trying to subdue their mast cells. I have had to stop eating all of these foods in addition to being GF, SF, CF and EF:

Foods to Avoid on a Low-histamine diet (courtesy of the International Chronic Urticaria Society)

Meat/Poultry/Fish
All seafood including shellfish or fish, fresh, frozen, smoked or canned
Egg (a small quantity in a baked product such as pancakes, muffins, cakes is usually tolerated)
Chicken
Processed, smoked and fermented meats such as luncheon meat, sausage, salami, pepperoni
Milk and Milk Products
Cheese (except for cottage cheese and ricotta cheese which are allowed)
Cheese products such as processed cheese, cheese slices, cheese spreads
Yogurt
Note: plain ordinary milk is allowed .

Fruits and Vegetables
Orange, Grapefruit, Lemon, Lime and all other citrus fruits
Cherries
Strawberries, Raspberries, Cranberries and all other berries
Apricot
Pineapple
Dates
Raisins and currants
Prunes
Relishes, Pickles
Spinach
Tomatoes, Ketchup and Tomato sauces / purees / pastes

Food Additives
Tartrazine and other artificial food colors
Preservatives, esp. benzoates, sulfites and BHA, BHT
Seasonings
Cinnamon
Chili powder
Cloves
Anise
Nutmeg
Curry powder
Hot paprika (cayenne)
Miscellaneous
Fermented soy products
Fermented food
Tea - herbal or regular
Chocolate, cocoa, and cola drinks
Alcohol
Vinegar and foods containing vinegar such as pickles, relishes, ketchup, and prepared mustard
Liquorice

Of course, there is the possibility that you do have a mast cell problem if you can't tolerate most of these foods. That's how I realized I had the problem.

Gloria

[MBombardier]

I think Karen was joking (see the wink at the end of her comment).

My question is... how long after the colonoscopy can you ask that the biopsies be stained, or do they have to be fresh?

[ant]

During the video, a person dressed in a gorilla suit walked across the court in full view. Only about 25% of those watching the video noticed the gorilla, since their attention was focused on a different task.

Brilliant!

Ant

[ant]

Dear Tex

I even noticed those faint patchy areas of inflammation during my own colonoscopy

Were you conscious and fully aware during the procedure? I know we are put under by the "date rape" drug so we are technically conscious, but I could only talk gibberish - or so I was told - I remembered nothing.

Best, ant