A slide backwards :(

[wmonique2]

Yeah, Leah, I hope that Tex chimes in...I am sure I am not the only one with such history..

Terri----where have you been girlfriend? I was about to ask if anybody saw you lurking around...You've been rather silent lately WElcome back!

Monique

[ldubois7]

Monique,

Phyllis at Entrolab told me that by rotating my foods I may not build new intolerances, but by eating the same things over and over, that can happen.

Now, others on this site have done just the opposite and had success, like Jean. It is all very confusing and frustrating. Do you leave 3 days in between a food?

[gluten]

Hi, I found an interesting study " From Lymphocytic colitis: a retrospective study of 199 Swedish patients". Another study " Is the use of PPI's Related to Increased Intraepithelial Lymphocytes in the Colon". These studies were found looking for research on phages and seretonin. Seretonin is very interesting because it is found in the G.I tract. If you have alot of time for research there is alot of information. Jon

[wmonique2]

Hi Linda,

You know I never spoke with anybody at enterolab although I did take their test.

Interesting way of dealing with it. No, I never rotate foods. Didn't know of it. Also, I eat so few foods, that I don't know if I could rotate anything. Between the elimination of high fiber foods and high histamine foods, there isn't much left. Most foods fit into one or the other categories. Add to that GF, SF, DF and EF....but I am gonna start keeping a rotation journal and see if that helps.

Thanks.

Monique

[tlras]

Hey Monique,

Honestly, I got depressed over reading this forum....so many setbacks lately, that I just needed to take a break. I find when I don't dwell on this disease, I'm less anxious. I've also been dealing with increased peri-menopause sytems, I guess. I was totally stressing over the hysterectomy I was supposed to have in June but doctor informed me I don't need it so I'm thrilled about that. I will one day though. I told him I needed to give my body a break....been through too much probing, prodding, poking, cut on...had enough. I want to heal more and get back into shape before I undergo any kind of abdominal surgery. A setback totally freaks me out right now as I haven't had one yet. YET! I've been very emotional lately....just up and crying for no reason. I know it's my hormones. Honestly can't believe it hasn't put me in a flare yet. And when I'm emotional I binge on corn chips and then get bloated at bedtime for a little while from overindulging. Thinking about giving up the corn chips for awhile. But no D since September...not even close. Tested salad and seem to do best if I eat a little of it and don't put salad dressing on it....still not sure about the salad dressing. Need to test it more I suppose.

Anyhoo, my son and hubby are about to take off to Yellowstone for 8 days leaving me alone to cause trouble I'm sure...lol. So a little stressed and depressed over that right now. Hubby can't seem to plan ahead so he's been driving me crazy. I'm just glad my kiddo gets to fly on his first jetliner! They would have to inject me with the Michael Jackson drug to get me on one of those. So trying to deal with the stress but should be better soon. But knowing I don't have to have surgery has lifted a huge weight off my shoulders.

Take care of yourself and good luck on the low histamine diet. Something I don't think I could do without going crazy. I hope that everyone who is backsliding some can get back to where they were soon. I'm wondering when my time will come. I know I shouldn't think that way but can't be helped right now.

@Tex....Yeah go figure about the avocados. Definitely will not stop eating those!

Terri

[carolm]

Monique,
I am definitely not worse, and although I may have a day every 2 weeks that I'm 'off' due to aggressive motility I've not had a big flare like my first one that put me flat on my back for 6 weeks with a 25 pound weight loss. When my LC hit it literally knocked me off my feet. I found this board right after I came home from my colonoscopy, because when I woke up the surgeon said "I think you have lymphopathic colitis". That afternoon I read enough here to know I had to go gluten free. I was already dairy free. So I never had your experience Monique of eating everything and being fine. I wasn't fine for the 6 weeks before that and I wasn't fine when I got the dx either. I took prednisone for a few weeks until I could get to my GI doc who switched me to Entocort. After that I started making a slow climb to improvement.

I had my colonoscopy and dx about the same time I was going back to work on my extended contract, which is 2 weeks before teachers come back to school. I was so weak and dizzy that climbing the stairs to my office was extremely difficult. Once i was there I didn't want to move. Normally in the course of a day its not unusual for me to be running up and down the stairs several times. I could barely work 4 hours a day. I was so nauseated when I woke up that I kept Zofran and Bonine on my bed side table and take it as soon as I woke up. Then I might have to stay in bed another hour waiting for it to subside. I barely functioned. At different times 2 of the principals I work for sent me home (that was humbling). Driving a few miles to work or to the grocery store took all the energy I had.

So I am not 100% yet, but I'll bet I'm 90% back. I have to plan more to travel and I don't have a wide variety of foods (I'm still working on that), but at least I function now with some predictability. I can schedule before-school meetings and feel certain I'll be able to attend. My nausea has been pretty much gone for a full year. I'm starting to work out now and I think that will be the ticket to me gaining more stamina. Certainly I'm not going to gain stamina by laying around. I have to find a balance between resting and working out.

I don't know if that answers your question but I am considerably better in many ways, not worse. I spend most of my day thinking of things other than how I feel. I couldn't have said that 18-24 months ago. This disease made me very self absorbed and I hated that the most. Thankfully I'm not in that place any more.

Carol

[tlras]

Monique....in answer to one of your other questions...I've been a lot better since I was diagnosed in July. Much better. But it's only been 5 1/2 months since I've been off Pepto. Only time will tell. So no worsening for me as of yet.

@Leah....praying you can figure out what the deal is and get back to normal...you were doing so well and I've noticed that you and I are a lot of like when it comes to foods....and I've been having one Norman every day (sometimes skip a day) like you were. Please keep us updated. Will be interested to hear about your egg challenge. Mast cells easily treatable?! Yeah right! He should read this forum!

Terri

[tex]

He said that there really isn't a diagnosis for that

Leah, please ask your ignorant GI specialist to look up mastocytic enterocolitis if he doesn't think there is a diagnosis for excess numbers of mast cells in the intestines.

Tex

[tex]

Hello y'all,

Now that we all gathered under Leah's tent, I'll venture to ask a question that's been gnawing at me for a good while.

Has anyone's symptoms been WORSE since diagnosed? And more importantly, the more I eliminate THE MORE sensitive I seem to become.

Here's what my scenario is (I'll make it brief): after diagnosis I was put on mesalamine, got better immediately, ate EVERYTHING. Eight months later went to Italy and France, ate EVERYTHING, drank wine.

I come back, read on the condition and decide that I better go GF. I got GF and soon thereafter I start having symptoms of nausea and cramps.

It seems to me that the more I eliminate, the more sensitive I have become to everything else.

Now I am two years post diagnosis and I am NOT healing. Still on mesalamine, added elavil inspite of all the eliminations (GF, SF, DF, low histamine and low fiber) I AM NOT HEALING. Just trying to stay symptom-free.

Has anybody gotten worse since diagnosis? Has anybody gotten MORE sensitive? Does anyone have a theory about this?

Thank you all.

Monique

Monique,

I can understand why you feel you are the victim of a dilemma, but based on the accumulated experiences of most members here, your experience is not typical. That said, it's not necessarily rare, either. Here are my views on this situation:

For some people, the anti-inflammatory drugs that the GI docs prescribe to treat MC actually work the way that the docs picture them as working. You are obviously one of those fortunate individuals for whom mesalamine gives complete control of symptoms (or, at least it did early on). For many/most of us, though, they don't typically work that well, and we have to avoid certain foods in order to achieve remission, even with the medication. If that drug hadn't worked initially, then you wouldn't be perceiving your current condition as worse. But more than that, there is a possibility that the mesalamine might no longer be beneficial for you.

Did you ever stop taking the mesalamine for a while? Many members find that if they do that, then when they start taking it again, it doesn't work as well as it did the first time. And some people seem to build up a tolerance for the drug, even if they don't stop taking it for a while.

The biggest problem with mesalamine though, is that it is a derivative of salicylic acid, similar to NSAIDs. And we all know that extended use of NSAIDs often leads to the development of MC, for many of us. I'm not aware of any medical research to verify this, but IMO, the extended use of mesalamine can almost surely lead to the production of leukotrienes, similar to NSAIDs. There is existing research, for example, that verifies that for anyone who is sensitive to NSAIDs, then mesalamine can/will trigger the same type of reaction, resulting in inflammation and D for anyone who has an IBD. So this is one possibility (that you have either become sensitive to mesalamine, or tolerant of it, so that it is no longer beneficial). I'm not saying this is the case, I'm just describing possibilities (you asked for a theory).

Your observation that you are more sensitive to certain foods now after you have eliminated them from your diet, than you were initially, is not just your imagination — you actually are more sensitive to them. This phenomenon occurs because after we have been reacting to a food for a long period of time, our immune system becomes sort of dulled to it's effect, and so it's response is toned down somewhat. If we eliminate a food long enough for the antibody level to decline slightly, then when we reintroduce the food, the "challenge" triggers a much more aggressive response, because the immune system "thought" that the danger was past. It is still on high alert however, so when it senses that the same antigen is back again, it launches an all-out response to eliminate the problem. This effect is similar to the rebound effect suffered when a PPI is discontinued, and the parietal cells in the stomach produce much more acid than they did before they were ever exposed to the PPI.

But contrary to what you might suspect, this does not mean that avoiding the food was detrimental to your health, because it clearly shows that you are very sensitive to the food, so it needs to be avoided. It is simply evidence that once your body is free from that food, it wants to stay free from that food, and it throws a tantrum to prove it.

And your perception that you now seem to be more sensitive to other foods is not your imagination, either, because as I explain my theory in the book, the immune system has sort of a one-track mind in that it tends to focus primarily on a single issue at a time. And there is an established hierarchy of food sensitivities, so that once the worst one is out of the diet, then the immune system will begin to focus on what it perceives to be the next most significant threat in the diet, and so on down the line. This is why some people cut out only gluten at first, reach remission, and then a few weeks or so later, they have a relapse of symptoms when their immune system begins to focus on the next food sensitivity, which is usually casein. After casein is eliminated, then soy may show up as a problem, and so fourth and so on.

If you have never had the EnteroLab C Panel, it might be very helpful to see which of those 11 foods might be causing problems.

How about seasonings? You're an excellent cook, and I'm assuming that you might use a wider variety of seasonings than many of us would use. It only takes one regularly-used ingredient to which we might react, or a regular trace of cross-contamination in our diet, to prevent healing from progressing.

I wish I knew of a surefire way to discover the problem, but tracking down problems in difficult cases tends to require serious detective work and sometimes a stroke of luck, as well. The answer is out there, somewhere, if we can just find it.

Tex

[carolm]

I was looking up information on histamine intolerance and if those tests would net me anymore information than the MRT tests, I came across this labs statement that some drugs interfere with the enzyme DAO. One of them was amitriptyline.

Inhibition of the enzyme DAO:

alcohol
drugs like e.g.: acetylcysteine, ambroxole, aminophylline, amitriptyline, chloroquine, clavulinic acid, isoniazid, metamizole, metoclopramide, propafenone, verapamil

The inhibition of the DAO enzyme results in histamine intolerance. Possible potent inhibitors of DAO are in particular alcohol, but also some common drugs.

http://lsialab.com/gb/Histamine_Intolerance_Test under their tab "background information". I checked their references and they are old-- ranging from 1969 (seriously) to 1999. This was a site where you can order a lab test for histamine intolerance so I'm wondering about the validity of their claims. I had never heard or read this list of meds that interfere with DAO nor could I find it anywhere else.

The results of my investigation is that MRT looked at more than just histamine intolerance so histamine intolerance tests will not be useful to me. And I'm not giving up my amitriptyline. The benefits are well worth any side effects for me at this point.

Has anyone else seen a list of meds that inhibit DAO? It might be worth consideration if its accurate information.

Carol

[tex]

Carol,

Amitriptyline is a relatively powerful antihistamine, as is typical of the older antidepressants. The article I've cited below is focused on sleep issues, but it contains some valuable insight into the functioning of many of the drugs in this class, and it clarifies why these drugs are often helpful for someone who has an IBD (that involves mast cell/histamine issues).

The entire article is interesting, but if you scroll down to the section titled A Closer Look at the Psychopharmacology of Histamine, you will find the most useful information below that point.

Amitryptyline and doxepin have H1 antagonism as their most potent pharmacologic property, but both are dosed far beyond the range necessary to block H1 receptors, in order to recruit the blockade of 5-HT and NE reuptake (Figure 6).1,23,24 For many TCAs, there is about a 10-fold higher potency for H1 receptors than for monoamine transporters (amitriptyline in Figure 6).23,24 However, for doxepin, there is >2 orders magnitude potency separation between antidepressant actions and H1 antagonism (doxepin in Figure 6).23,24

Selective Histamine H1 Antagonism: Novel Hypnotic and Pharmacologic Actions Challenge Classical Notions of Antihistamines

Tex

[wmonique2]

Tex,

Thank you so much for your expansive answer. I knew that you'll have the answer for me. It hit home when I read that mesalamine could have stopped working or is no longer as effective as it used to be. I used to take 2 a day (which is standard maintenance protocol) I now take 3 a day to keep the cramping symptoms at bay. When I try to lower it to 2, I get horrible cramps and I go back to 3 immediately within 24 hours.

So I have to stop thinking that it's me and start thinking that it is probably the meds. Never dawned on me that it could be the meds (DUH). I used to be very sensitive to NSAIDS, so there is another reason why it feels like I am never getting better. Maybe I am the same but it feels worse at times because the meds aren't cutting it anymore.

I did take the enterolab test and I tested positive to soy and gluten and walnuts. Fine on dairy. Everything that is problematic has been eliminated from my life. Now I follow low histamine and low fiber. If I have more than a fruit a day, I have horrific cramps. Not worth the trouble.

Ah, the spices! I forgot about those. I only use turmeric or paprika in rice. Turmeric is an anti-inflammatory but it is high in histamine. I don't use it as much as I used to...

Thank you (again) Tex. I don't know where we all be without you. You're a wealth of information. Lucky us.

Carol,

Thank you for responding. Your experience has been been similar to mine except that I was deadly ill before diagnosis but I lucked out after and had a six-month honeymoon. And then all hell broke loose with the nausea when I joined this board. Like you I won't cut out elavil, I might as well cut my throat because without it I'd be suicidal.

Terri,

I am so sorry that your emotional state is tentative. Go and get yourself some bio-identical hormones. It would change your life and your outlook on life. It's not worth the agony. Soon or later, you gonna need them. I knew that you were taking a break--now and then I do it too, for like a couple of weeks and then I come back because I miss my internet family. Totally get it. We missed you though!

Love you guys!

Monique

[Deb]

Monique, I tested positive for gluten, casein, soy and eggs. My gluten was "off the charts" at over 500. The rest were in the 30's and 40's. I eliminated gluten (about a month after diagnosis and two months after symptoms) and I did well for about a year and a half. I then had a lot of stressful events and ended up with D for about 6 months. I tried eliminating casein for a couple of weeks and had no noticeable effects when reintroduced. Today, I mostly cook at home but have very few (if any) reactions to casein, soy, or eggs. At restaurants I do have issues and suspect cross-contamination. I do worry about effects I'm not seeing but I also worry that if I don't seem to have issues and I eliminate something, I may have issues later. Who knows? Deb

[Leah]

Terri, I take OTC herbal formations to curb the peri-menopausal symptoms. Just make sure you read the labels for ingredients. Right now, I am taking something called FEMMINESSENCE and had to order it on line. Seems to work. No more night sweats!

leah

[carolm]

Tex, thanks very much for the article. It is well worth the time to read it. I can see now how amitriptyline had helped me a more than one way.
My pattern was that virtually 100% of the time I would have a terrible bout of aggressive motility (followed by 8 bms in about 90 minutes, cramping, etc) in the morning, following a night where I either didn't get enough sleep or I slept poorly. The pattern was very clear on my log. What I couldn't ever determine was whether I had dysmotility because I slept poorly or whether I slept poorly because my gut was already getting out of sync during the night. My GI doc saw the pattern very clearly on my log too and prescribed amitriptyline because it would relax the smooth muscles of the intestines. Then she said "this will help you sleep too". It's worked on both fronts. I will say that if I take it too late at night I will have a drug hangover in the morning. I find I feel much better and have more energy the next day if I take it around 7:45-8:00pm.

Also, if I read the article correctly, then it's sounded ok that I've been taking my Zantac at night (as I titrate off of Dexilant) along with the amitriptyline. I take my Claritin and 1/2 a Dexilant in the morning.

Thanks again for the article. I'm looking forward to reading it again.

Carol