New with question about mast cells and LC

[faithberry]

Tex: Thanks for the links. I recall now that an early Intestinal Permeability test did show me just right into the red for mannitol recovery indicating the possibility of some malabsorption. I'm DQ 1,1 (HLA DQBA 0501, 0502.

Dee: Looks like you found your way to the International Chronic Urticaria Society website. I hope you don't have autoimmune urticaria, but it's good to have the information so you can find out if your problems continue.

[tex]

Faith,

I see you're another member of the Double DQ1 Club. Do you mind if I add your test results to our "collection" here?

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=2645

Tex

[faithberry]

Sure, add me in. Sounds like a special club

What does it mean anyway? I read somewhere here (can't find it now) that it means you might have multiple food allergies. Could this be why I am 'allergic' to almost all food? Non IgE. Are the food allergies we have a lymphocyte issue then?

[tex]

Yes, individuals with double DQ1 genes have multiple/many food intolerances, and typically have a much more difficult time achieving remission.

Yes again, generally the reactions involved are not IgE related - they're due to increased lymphocytic infiltration into the epithelia of the colon, (by definition, but I suspect that the same pattern can apply to the small intestine and the stomach, in some cases). (This does not imply that you cannot also have IgE reactions, they just wouldn't be a typical part of the MC spectrum - I could be wrong, though, because certain MC patients do show IgE-related symptoms, so maybe that's a "normal" part of MC reactions, for all I know). This is difficult to pin down, because issues such as this are not normally included in the "official" descriptions of the disease - that leaves it open to interpretation, and/or debate.

Thanks, I'll add your test results to the others.

Tex

[faithberry]

Tex,

Dr. Lewey says:

Microscopic colitis, food allergies and oral allergy syndrome reactions are also found in association with other DQ types.

...other than DQ4.

From this it seems like you are at risk for food allergies and oral allergy syndrome even if you do not have MC. Do you read it that way? In that case, it wouldn't necessarily have to do with the epithelial cells in the colon or would it?

I guess it's impossible to know the status of my MC without having another colonoscopy. I haven't had loose stools for years except on a few rare occasions when I presumably ate something I cannot tolerate and those times were more than a year ago. Now I have C and that's been fairly constant for a year now. I've been assuming my MC is in remission, but maybe I'm wrong???

But if I'm not eating any of the big bad five and none of the other foods that give me problems, why am I becoming increasingly more sensitive? And why am I so super sensitive to histamine foods, in particular? Could this just be a case of taking a really, really long time to go into remission? What's the story with the C then? Or am I having food allergies, as Dr. Lewey indicates, that relate to something other than MC? Sometimes I feel I am going around in circles. Have you ever heard of someone with MC who got progressively more sensitive to food without having D!!!!???? And by remission do we mean no D, or no lymphocytic infiltration?

I know you don't have a crystal ball, but if you have any insights, I would appreciate hearing about them.

Thanks for your kindness.

[tex]

From this it seems like you are at risk for food allergies and oral allergy syndrome even if you do not have MC. Do you read it that way? In that case, it wouldn't necessarily have to do with the epithelial cells in the colon or would it?

Yes, anyone can have food allergies, whether by skin contact, or by ingestion, because the body is covered both inside and out, by epithelium tissues. In the case of most true food allergies, though, no, it probably would not affect the colon. Remember that having MC does not make us immune to any other disease. IOW, we can have any of the other issues that the general population is subject to. When someone with MC is diagnosed with Crohn's disease, the natural inclination is to believe that the MC segued into Crohn's diesease, but that is not likely to be what happened. Most likely, it is an independent event, simply because MC does not make us immune to developing Crohn's disease, (we can develop it just like anyone else in the general population, who happens to have the genes that confer susceptibility).

Are you aware that C is a symptom of MC for many of us? When I was actively reacting, I alternated between D and C, (quite a few of us here fall into that category). C can be the predominant symptom, for some people. I suspect though, that very few people ever pursue a diagnosis, when C is the primary symptom. Men, especially, are prone to not seeking medical help for issues such as this. I can assure you that I never would have gone to see a doctor about this, if I had not had an episode of "uncontrollable D", that lasted more than a couple of weeks. If any of the common remedies would have worked, I never would have even considered seeing a doctor. And, if C had been the only symptom, I simply can't visualize myself telling a doctor, "Doc, I have uncontrollable C". I can't picture anyone else doing that either, so that is probably why diagnoses of MCers with C-predominant BMs, are as scarce as hen's teeth.

When I was healing, I could not tolerant any dairy products. After I had been in remission for a few years, I tried to add dairy products back into my diet, but they always gave me C. I have finally reached the point, though, (five years into remission), where I can ingest dairy products without either D or C. That raises the question, "Was I really in remission, if dairy products gave me C?" Probably not, but since the C phase of MC typically does not carry with it any of the other symptoms of MC, (joint and body aches and pains, headaches, gas, bloating, brain fog, etc.), we tend to overlook it as an MC reaction. The reason why these other symptoms are absent during a C phase reaction, is presumably because the C phase does not involve the leaky gut syndrome, so none of the undigested peptides are able to get into the blood stream, and end up in other organs, joints, etc., where they would cause the other symptoms. IOW, the C form of MC is a very mild form of the disease, when compared with the D form. Note, however, that the "official" definition of MC does not even allow for a C phase. I think that is an error, which once again illustrates how poorly doctors understand MC.

The bottom line is, IMO, your food allergies, (at least some of them), could be unrelated to MC, (in the sense that they are not directly caused by it, but, of course, since MC can trigger other autoimmune diseases, the root cause of the allergies might have been initially triggered by the MC - these are uncharted waters), but the C is very likely a symptom of MC.

But if I'm not eating any of the big bad five and none of the other foods that give me problems, why am I becoming increasingly more sensitive?

The following is just my own opinion, but I believe that it is valid, based on logic, and observation of the behavior of the immune system, for those of us who are multiply intolerant. The immune system tends to address the most serious threat that it perceives. Initially, with MC, that is gluten sensitivity. This implies that the immune system "ignores" lesser threats, while it concentrates on the most serious issue of the moment. Once gluten is eliminated from the diet, and the production of anti-gliadin antibodies begins to diminish, then the immune system "notices" other, "lesser" threats, and begins to address those. Note that stool tests can detect anti-gliadin antibodies for over a year after gluten is removed from the diet, (in fact, they can be detected up to two years later), therefore, it is theoretically possible that detection of some "secondary" intolerances can be deferred for a long period of time, as the most significant ones are eliminated, and the respective antibody production diminishes. I'm sure most GI docs are totally unaware of this possibility, since the blood tests that they use to detect gluten sensitivity, (celiac disease), are incapable of detecting anti-gliadin antibodies for more than a month or two after gluten is withdrawn from the diet, even in the case of fully-developed celiac disease.

Remember that almost all of what I have written here is just my opinion, based on what I have read in research articles, and in posts on this board, based on personal experiences.

You're more than welcome,

Tex

[faithberry]

Tex,

I really can't thank you enough for your help.

You wrote:

Are you aware that C is a symptom of MC for many of us? When I was actively reacting, I alternated between D and C, (quite a few of us here fall into that category). C can be the predominant symptom, for some people.

No, I wasn't aware of that. That certainly changes the possibilities for me. I think you are probably correct then that the C is very likely a symptom of LC and chances are that I never actually went into remission at all...just slid slowly from D to C. I've actually had a few C phases now intermixed with normal phases, but this last C phase has lasted a year, becoming very chronic.

I've continued all along to have all my many systemic symptoms in the C phases too and all the food intolerances, although I don't have leaky gut according to my intestinal permeability test...at least not when I took it several years ago. Who knows now. You are correct that I could possibly have a different disease in addition to the LC. There is some possibility I've developed a mast cell disease as well, and I will continue to explore that possibility until it can be ruled out. But the symptoms could possible be an extension of the LC alone. My poops are floating a bit these days, so perhaps that's not a great sign either!

I find this snip from Dr. Fine's site very interesting in relation to the systemic problems:

Because microscopic colitis is a chronic inflammatory syndrome associated with production by the immune system of chemical mediators that circulate in the blood, patients with microscopic colitis often experience fatigue, joint pains, muscle aches and fibromyalgia, and even fever is possible.

I'm not sure if he means chemical mediators from the lymphocytes alone or possibly from mast cells as well. I wonder if these chemical mediators can get into the blood stream without leaky gut.

My GP gave me a prescription for the Gastrocrom so I will be giving it a trial run. It's used in IBD and food allergies in addition to mastocytosis so maybe it will help. I did a quick google search and saw mention of C in 1 or 2 research studies and budesonide is listed as effective for MC with C. So that can be a next option if the Gastrocrom doesn't work well.

I truly cannot thank you enough. I've been pulling my hair out trying to figure out what all these increasing intolerances are about, when the answer was probably in front of my nose! I hope my immune system will relax and all those antibodies run out soon.



P. S. My GI doctor told me emphatically this could not be a recurrence of LC because "those folks have diarrhea twenty times a day." And he's a professor at a University.

[tex]

but this last D phase has lasted a year, becoming very chronic.

I've continued all along to have all my many systemic symptoms in the D phases too and all the food intolerances

I'm guessing those are typos, and you really mean C, rather than D, or am I misunderstanding you?

I've always assumed that the primary cause of most of the peripheral issues associated with MC, was improperly-digested sequences of amino acid chains, that leak into the bloodstream, and then end up in organs, joints, etc., because of LGS. To be honest, I never gave much thought to chemical mediators causing those issues, though, in retrospect, they almost certainly should cause problems. I still believe that the LGS causes much worse issues, than normal chemical mediators generated because of MC, but the combined effect would certainly help to explain why some of us have such varying symptoms, and why some of us have so much more severe symptoms.

Yes, floating poop is not a good sign. It's usually a sign of a malabsorption problem, but I suppose it could also indicate other digestive system issues. It's common with celiac disease, IBDs, candida overgrowth, etc.

I'm not sure if he means chemical mediators from the lymphocytes alone or possibly from mast cells as well. I wonder if these chemical mediators can get into the blood stream without leaky gut.

I'm not sure exactly what he is referring to there, either, but presumably, any chemical mediators would have free access to the bloodstream. LGS, typically opens the possibility for peptides and longer amino acid chains to enter the bloodstream, (through the tight junctions), but that shouldn't even be necessary for the absorption of chemical mediators. I would guess that this refers primarly to T-cells, but I could be wrong, because that's truly just a guess.

P. S. My GI doctor told me emphatically this could not be a recurrence of LC because "those folks have diarrhea twenty times a day." And he's a professor at a University.

In my own case, during the D phase, I usually only had about 6 or 7 BMs per day, though some days were a little worse, and some were better. I think the statement your doctor made pinpoints the biggest problem with most GI docs - they read something published 25 years ago, and then they never bother to look around to see if that information has been superseded by more current info. If they publish an article themselves, they tend to repeat the same obsolete information, thus perpetuating the misinformation. I don't understand how they can consider themselves to be scientists, if they don't "burn to learn" as much as they can about the diseases they treat.

You're most welcome. I hope the Gastrocrom is a big help

Tex

[faithberry]

Tex,

Tex wrote

I'm guessing those are typos, and you really mean C, rather than D, or am I misunderstanding you?

Yes, those were typos and I've corrected them. I think you're right, leaky gut and chemical mediators might play a different role in different people's MC.

Tex wrote

Yes, individuals with double DQ1 genes have multiple/many food intolerances, and typically have a much more difficult time achieving remission.

Is that because of the 'double' aspect or because of the DQ1 aspect? I didn't see this mentioned in the thread with the members' genetics list. Is it explained anywhere?


From the Histamine and Histamine Intolerance article:

The human DAO gene spans {approx}10 kbp and is located on chromosome 7q35 (27) Various single-nucleotide polymorphisms (SNPs) in the DAO gene have been shown to be associated with inflammatory and neoplastic gastrointestinal diseases, such as food allergy (44), gluten-sensitive enteropathy, Crohn disease, ulcerative colitis, and colon adenoma...

Is 'single-nucleotide polymorphisms (SNPs)' code for 'genetic mutation?' I don't quite understand what this quote implies. Do you think it's saying that the SNP's are causing inhibition of DAO activity in addition to triggering these IBD diseases or that it is the damage to the villi that causes impaired DAO activity? I do see your mention in one of your posts of suspecting damage to the villi, but I find it a little tricky to understand this quote.

Hope I'm not asking you too many questions! I appreciate all the time you give to people in the forum.

[JLH]

I have LC and never had that many episodes of D. I would guess even less than half that amount......


For your GI........

[faithberry]

Joan, I got a good laugh out of your flag pole raising! Thanks for the encouragement. I will never see that doctor again!

[tex]

Is that because of the 'double' aspect or because of the DQ1 aspect? I didn't see this mentioned in the thread with the members' genetics list. Is it explained anywhere?

It's because of the double alleles. Double DQ2s have the same increased risks as Double DQ1s, but with a more celiac slant, (regarding the odds of developing full-blown celiac disease, etc.). We have only two members, known to have that gene combination, whereas we have six members with the Double DQ1 arrangement. To the best of my knowledge, neither of those two have been diagnosed with celiac disease, but it's possible that early adoption of the diet may have stalled the development, or they may have it, but it was not properly diagnosed, before they adopted the diet, and it cannot be diagnosed, once the GF diet has been rigidly followed for a sufficiently long period of time. Also, I would assume that most people with double DQ2 genes end up on celiac discussion boards, rather than here, (because of the greatly increased risk of developing celiac disease). Double DQ1 genes would predispose to a greatly increased risk of developing MC, by comparison.

DNA knowledge is way out of my area of expertise, so I can only repeat what Wikipedia says about SNPs:

A single-nucleotide polymorphism (SNP, pronounced snip) is a DNA sequence variation occurring when a single nucleotide — A, T, C, or G — in the genome (or other shared sequence) differs between members of a species (or between paired chromosomes in an individual). For example, two sequenced DNA fragments from different individuals, AAGCCTA to AAGCTTA, contain a difference in a single nucleotide. In this case we say that there are two alleles : C and T. Almost all common SNPs have only two alleles.

IOW, in a SNP, everything in the sequence, except for a single nucleotide, will be identical, (not only the alleles, but also their positions in the sequence, if I understand this correctly). Note that these genes do not actually trigger IBDs, celiac disease, etc. - they merely predispose to the GI diseases. Some other event is required to actually trigger the diseases. A SNP does not necessarily represent a genetic mutation, (though I suppose it could be), it's just an alternate expression of the possible alleles. While viruses can alter genes, I'm not aware that disease, nor physical damage, (except for damage to the actual DNA material inside the cell, of course), is capable of doing that, but I'm far from an expert on genetic events.

No, you're not asking too many questions. Questions are what force us to think, and gain insight into what's going in, in most cases. I apologize for not being able to provide better answers. The area of genetics is a pretty complex issue, and most of this, pertaining to the IBDs, especially, amounts to sailing in uncharted waters. Verified answers to a lot of questions, are few and far between.

Tex

[faithberry]

Tex,

Thanks for your interpretation, otherwise the WIKI quote would be Greek to me!

I re-read the chapter on inflammation in the book Ultraprevention and they too say that inflammation in the gut can lead to inflammation anywhere in the body due to the chemical messengers of the immune system dashing through the blood stream. So perhaps chemical mediators play quite a major role for some of us, with leaky gut being an important factor for others. Or both might be in play for some.

From what I can gather, if I understand correctly, mast cells can set lymphocytes into action and lymphocytes can set mast cells into action. Another chicken and the egg story.

I had the shocking and delicious experience of being able to eat an orange today after taking sufficient antihistamines. I haven't had an orange for 2 years. This must mean there's something going on with histamines! But I realize the antihistamines can be a double-edged sword since they mask the symptoms.

Thanks for all your help.

[tex]

Faith,

The immune system is incredibly complex, (as is the rest of the body's regulatory systems), and when something goes wrong, it just gets that much more complicated.

Congrats on being able to eat an orange. I was so afraid of them that I avoided them for 4 years. I finally got up the nerve to try them again last year, and lo and behold - no problems.

You're most welcome,
Tex

[faithberry]

Tex,

They have released the diamine oxidase enzyme in the U. S. now under the name 'Histame'. The website is www.histame.com if this is of any interest to you. I'm afraid it would make me sick like the equivalent one in Germany (DAOsin) because of the 'other' ingredients. They aren't listed on the site.

I was feeling less well this afternoon and had to take my anti-histamine early so I'm not sure about anything I ate today!!! If I have constant C how can I ever know how a food effects me? There are a number of foods that don't effect my gut in any way I am aware of (no pain, gas, bloating, or D), but I have the systemic reactions and chronic D. This is my dilemma. Guess I should just try to Gastrocrom and see how it works, be patient, and when necessary move on to the next step. It's clear there are no easy answers. I can't do the Paleo diet because all types of meat, poultry, fish, etc. give me the worst abdominal problems.