CC Process of Remission: WITHOUT Food Sensitivities involved

[TREESE]

The Title of this Post might be confusing at first glance, so if I may explain...

I have been diagnosed with CC since June and just got back my EnteroLab Food Sensitivity Results. Other than Gluten Sensitivity, no food group showed any significant reaction. Mild reactions to Oats, Cashews and Walnuts. My Doctor says Vit. "D" levels are Normal, IgA Blood Test shows no deficiency.

But I do still have CC... And I realize the Lab Results are for Anyone who takes those Tests, not just for people with CC. I know that for us, Remission takes time until the inflammation goes away and the Intestinal Healing can take place. I've been told it could even take a year or more.

So - I have eliminated Gluten from my diet, as the Test Results Interpretation advised. And I won't be eating any Oats or Walnuts and Cashews, either.

QUESTION: Since my Test Results did Not show any food sensitivities toward fish, beef, or pork, and none to Eggs or Dairy, might those products be Re-introduced BEFORE Remission? Or, must they Still wait until a substantial Remission time has gone by?

I intend NOT to have Any fresh fruit or raw vegetables yet. That much I realize I must add back ONLY at the very end...maybe even a year or so. But, about the NOW...

I Welcome your thoughts and experiences, all! Thank you!
TREESE

[Lilja]

Hi,

Here is a poll showing time before general remission, regardless of how many food sensitivities people had:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21231

Lilia

[tex]

Hi Treese,

You should be able to tolerate the foods that showed negative results on the tests. The only fly in the ointment might be that it's possible to be sensitive to some of the other proteins in those foods. The tests have to be very specific, in order to be accurate (and affordable), so only the protein that is most commonly the problem with that particular food is tested for (for each food). But that would be unusual, so you will probably be OK with them.

You may have to continue avoiding dairy products until the inflammation is gone, because everyone (not just MC patients) is lactose intolerant when their gut is inflamed. That's why no one can tolerate milk when they have the flu. But that's a temporary situation, too.

At least that's my 2 cents worth.

Tex

[TREESE]

Good Morning - and thank you for your Comments on Remission, Lilia and Tex. I did look up that Poll through your LINK and copied it for my Notes, as I do many of your most generous and caring comments. Tex, I have a Book filled already with yours! :)

ER YESTERDAY - a Serious Allergic reaction to "something" awoke me at 4am hardly able to breathe. The Uvula in my throat had swelled up. Went to the Emergency Room and was given Benadryl intravenously. LONG Story, Short...wound up at an Ear-Nose-Throat Specialist who got me in to see an Allergist immediately. She referred me for yet More Blood Work (my arms are resembling pin cushions at this point) This time for Mast Cells and protein levels, I believe.

I remember reading about Mast Cells in this Forum before, but I forgot if Blood Tests were the way to determine if there IS Mast Cell involvement.

QUESTION: Is Blood Work the way to Test for Mast Cell involvement? If not, how should I get Tested and by what kind of Doctor?

Thanking you ahead of time for your assistance,
TREESE

[tex]

Hi Treese,

I'm sorry to hear that you had such a severe reaction to something. Unfortunately, there are no tests to directly measure histamine levels or mast cell activity. However, there is an enzyme (tryptase) that also rapidly increases in the blood whenever a mast cell/histamine reaction is triggered. Therefore, one's tryptase level can be measured as a way to indirectly measure relative histamine levels. However, the blood must be sampled soon after a reaction begins.

Normally, the blood tryptase level is very low. When mast cells are activated, the histamine level rises rapidly, and so does the tryptase level. It begins to rise within about 15 to 30 minutes, and it typically peaks in about 1 to 2 hours. After that the level begins to decay, and it returns to normal. The rate at which it returns to normal varies by the individual, and can take anywhere from several hours to a couple of days. In a case such as yours, where you had anaphylactic symptoms, tryptase levels would be very high.

In most cases, the blood sample would ideally need to be drawn during about a 2-hour window of opportunity, beginning about an hour or 2 after the reaction first begins. In your case, since you had anaphylaxis, your level might still be somewhat high.

There's a chance that the ER team might have ordered a tryptase test, and if they did, that result would be on your record. If the ER docs didn't order a tryptase test then surely the allergist did. If you have an online account to access all your medical records, then you should be able to see that test result within a day or so.

Many years ago, somewhere after the end of the paleolithic period of history, I had a similar experience. I awakened in the wee hours of the morning with breathing difficulties, my heart was racing, and I was confused and groggy. I felt hot, so I got up and went to the bathroom to wash my face. When I looked in the mirror, I could see the characteristic rash (flush) on my chest, so I knew that I was having an anaphylactic reaction. In those days, since I lived way out in the country, I was a long way from help, so I toughed it out. Luckily, the symptoms didn't become any worse, and I recovered, none the worse for wear.

The only clue that I could find that might have been related to the cause was a red, itchy bump on my elbow. Apparently I had been bitten by some type of insect, and that triggered the reaction. After that, I kept Benadryl on hand, but it never happened again. So there is a chance that it will never happen again for you, either. But just in case, as insurance it might be a good idea to either get a script for an Epipen from your doctor, or keep a bottle of Benadryl on hand.

Incidentally, the fact that you were given Benadryl in the ER brings to mind a common problem associated with allergic reactions — even ER doctors don't usually respond with the correct treatment. According to a Medscape article, misuse of epinephrine is a chronic problem. That implies that when we go to the ER with a severe allergic reaction, there is a good chance that we may not receive an optimum treatment.

Injectable Epinephrine: An Epidemic of Misuse

I hope that some of this is helpful,
Tex

P. S. If you can't access that article, and/or you don't want to register for a Medscape account so that you can read it, please let me know and I'll copy it for you.

[TREESE]

TEX, I think you hit the nail on the head!! Last night when I finally got to lie down after a Very long Doctor-filled day, there was a young Wasp with a very long stinger flying around inside the lamp shade of my lit night lamp. Never saw a bee in my Apartment before. And being I was never stung by a bee before, either, it might just have been that wasp. Or a friend of his that went and died somewhere afterwards.

Needless to say, the Lamp Flyer is no longer with us... (swat!!)

The ER sent me to my ENT who sent me to his Allergist who prescribed an Epi-pen which I picked up last night to have on hand, just in case. The Allergist did say she was testing for Mast Cells because I asked her, but she didn't use that term. She could have used the term, tryptase, but I wouldn't have made a connection before I read this, so can't be sure. But I Did get the Blood Work done today. Maybe it can still be detected, as you say.

QUESTIONS: What would knowing about Mast Cell influences contribute to this puzzle of CC? What pieces would fall into place? Would it help my Doctor treat me more effectively?

I'm gonna try the LINK you offered, Tex, thanks! I'll bet it's a very interesting Article!

Wishing all a good weekend,
TREESE

[tex]

Treese,

Such events happen so rarely that we don't have enough information about them to make any intelligent judgments regarding connections with MC or any other condition. We know that if mast cells are active, we tend to have increased intestinal symptoms. However, an anaphylactic event is a very temporary condition, and after a few days, it should have no influence on anything else.

I will offer this advice, however, based on the past experiences of several members of this board — never, ever get a flu shot if you are having any mast cell symptoms. Several members here have experienced a severe reaction to a flu vaccine, and it resulted in them developing systemic mastocytosis, which is bad stuff, to say the least.

It appears that these members were having mild to moderate mast cell activation issues when they received the vaccine, and the vaccine caused their mast cells to sort of "go ballistic", triggering a major reaction. Systemic mastocytosis is a permanent AI problem, once it is triggered, so it's something that we definitely want to avoid, if at all possible.

Here's a link to an old thread where one of them described her reaction:

This might be what I have

Note that this is not a classic anaphylactic reaction, because instead of the blood pressure falling, it goes up, as discussed in this thread:

Worse Dr.s appt ever!

And you may find the discussions in this old thread to be informative:

A few thoughts on MC and MCAD

Here is another "flu shot" experience by another member:

New here and overwhelmed!!

But as far as information about your own experiences with mast cell problems possibly helping your doctor to treat you more effectively, I believe that you can safely forget about that possibly. Your doctor wouldn't have the foggiest idea what to do with that information, because it would fly way over her or his head, unless she or he happens to be a mast cell expert, and there are very few mast cell experts in this country (or the world, for that matter), and most of them are affiliated with Brigham and Women's Hospital in Boston, trained by Dr. Mariana Castells.

Thanks. I hope you have a most enjoyable weekend, too.

Tex

[TREESE]

Sorry I haven't been able to Reply, TEX, and All, but I had yet another Emergency Room Visit 2 days after that first one I wrote about. Apparently, it wasn't a Bug Sting or Bite that caused the swelling of my Uvula, but that same infection that was causing the lymph glands of my neck and the inside of my throat to swell to a serious point of impinging on my food- swallowing and breathing. It happened again. This time, they put me on a Countdown Steroid Pack of Prednisone. The swelling went down and stayed down. But, here's my concern, at present...

My BMs are definitely affected by all this. I'm done with the Azithromyacin, finally, but still taking Probiotics because of having had to take the Antibiotics. Still on the Lialda and now taking the Prednisone pack until Saturday. Stress, of course. Stomach not happy. BM's still formed to a point but too often, again.

QUESTIONS: Can coming off of Gluten wreak its own form of havoc on our system for a while, until we get adjusted to it? Might the different types of ingredients in the Gluten-free breads, pasta's, etc. also create intestinal disturbances?

This is really not easy to sort out.
Thanks... TREESE

[tex]

Well that explains why your symptoms didn't fit the classic pattern for anaphylaxis. I'm sorry that you had to go through all that again.

It's possible to have an emotional dependency on gluten, because gluten contains gluteomorphins that act on opioid receptors in the brain. Because of that, some people actually seem to be addicted to gluten, and they feel significant withdrawal symptoms when they stop eating it. The same goes for casein in dairy products — opioid receptors in the brain respond to casomorphins in casein, so some people have withdrawal symptoms when they try to stop eating dairy products.

But so far at least, no one has been able to demonstrate that discontinuing gluten from the diet can have anything but beneficial effects for the digestive system. It's certainly possible for so-called gluten-free products to cause digestive system problems, though. Many such processed products are cross-contaminated with gluten, soy, or other food allergens. Many of us react to the gums used in many GF baked products, for example.

I hope that you're finished with those infection-based reactions now, and you'll quickly recover from the treatment side effects.

Tex

[TREESE]

Hello, Tex and CC family - posting at nearly 4 am is never really a good sign, is it? Well, since my BMs are off again, I am having a few concerns...

Preventing Dehydration:

QUESTION: Is Pedialyte SAFE to drink with CC?

Ingredients of Gluten Free Products, like Breads bought in stores and GF Muffin Mixes:

QUESTION: Are there tests to see if one is reacting to the different flours the companies use or the gums? Or is it more likely a matter of cross-contamination? Trying to figure out why the loose BMs are back...

Probiotics Just finished my antibiotics and wondering how long to keep taking the Probiotics to prevent the antibiotics effect from causing problems...

QUESTION: 2 weeks or longer?

Bacterial or Viral Infection -

QUESTION: Does a Bacterial or Viral Infection bring the symptoms of CC back?

Thanks - hope you are all sleeping better than I am this evening,
TREESE

[tex]

Hi Treese,

I'm sorry that you're still having problems. I'll try to answer your questions, based on the experiences of most of us here.

Yes, pedialyte is generally safe, but it does contain sugar, which can be a problem for many of us while we are recovering. There are also electrolyte drinks that you can make yourself. You can find a recipe here:

Dehydration and Electrolyte Imbalance

Some commercially-processed products that contain certain GF flours often cause problems for some of us, mostly due to cross-contamination of the flours, according to research. Some of us seem to tolerate them just fine, while others have problems with them. And as you mentioned, some of us have problems with gums, because most of them are legumes, which are closely related to soy.

About 2 weeks is usually long enough to take a probiotic after an antibiotic treatment.

Yes, unfortunately most bacterial or viral infections that take place in the gut cause inflammation, so they can trigger an MC flare.

I hope you're unable to read this response for a while because you're sleeping.

Tex

[TREESE]

Hello, Tex... actually I wasn't asleep, but I sure do appreciate the sentiment, thanks. I'm just feeling...you'll pardon the phrase...pooped out!

I just read the Antibiotic Box the meds I was on last week came in and the First and Most Common side-effect was Diarrhea. I guess I thought it might be Safer because it was on that fairly Safe Antiobiotics List I found on the Forum. Guess everyone reacts differently. Maybe in a year from now, and with more healing, it would have been fine to take. But not yet...

I followed that LINK for Elektrolyte recipes, thanks. Can't find that one without sugar recommended and sold on-line from the Allergy Group anymore, though. They don't seem to carry it anymore. Oh well.

I do think Pedialyte might make one with less sugar, if I remember right. But it was like drinking from the bottom of the Pacific Ocean, if I recall. Pure Salt-tasting. But, hey, if it does the job, I'll drink it!

Maybe tomorrow, I'll take a crawl over to the Store to get some. For now, I'm just gonna lie here...

Thanks for your help!
TREESE

[TREESE]

Some Posts Back, TEX, you mentioned a TRYPTASE Test "There's a chance that the ER team might have ordered a tryptase test, and if they did, that result would be on your record. If the ER docs didn't order a tryptase test then surely the allergist did. If you have an online account to access all your medical records, then you should be able to see that test result within a day or so."

Well, I Just got those results back today.... Showed a Range of 2-10 NG/ML being Normal and I was a 3. A Note said it measured both the Alpha and Beta forms of Tryptase.

It also showed 9 things also tested that were Out of Range and 37 In Range. You need a Medical Degree to keep up with all this, sheesh!

Have a good day!
TREESE

[nancyl]

I would just like to add one thing here. Coconut water is an excellent drink for someone who is concerned about dehydration. It contains all natural electrolytes, and does not have sugar. I like VitaCoco. My GI doctor says he drinks it everyday. I think it's a lot better than those sugary drinks. I hope you are feeling better.

Nancy

[tex]

Treese,

Yes, your tryptase result was definitely normal on that test result, so apparently all of your symptoms were due to the infection, and not to a mast cell reaction.

Tex