Hi,
Gloria has been speaking about fructose intolerance on another threat. This may be useful information for some of us with mast cell issues. I am going to do the FODMAPs diet, which includes fructose, fructans, galactans, polyols, and lactose. Not all fructose has to be eliminated. The problem foods are one's where the fructose is in excess of the glucose, like apples and pears.
In case you are interested, here are links I found:
http://www.healthhype.com/fodmap-diet-f ... d-gas.html
There is a yahoo group which has very detailed information in their files section:
health.groups.yahoo.com/group/fructose_malabsorption_australia/messages
No doubt Mary Beth knows all about this!
Mastocytic Enterocolitis
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Faith,
I am familiar with FODMAP and also follow the diet guidelines. I have a dietitian friend in Australia, where FODMAP research is being done, and she gave me this updated list of acceptable FODMAP fruits and veggies:
The FODMAPs friendly fruits are :
Banana, kiwi, strawberries, blueberries, grapes, lemon, oranges, mandarins (clementines), canteloupe, paw paw (papaya), pineapple, raspberry, rhubarb and tangelo. If you have fructose malabsorption you should limit intake to 1 serve per sitting or a small handful.
The suitable vegetables are:
Bok choy, capscicum (bell peppers), carrot, celery, chives, choko, choy sum, corn, cucumber, eggplant, endive, green part of spring onion, ginger, green beans, lettuce (coral ad ice berg), olives, potato, parsnip, pumpkin, silverbeet (swiss chard), tomatom, zucchini.
I saw definite improvement after restricting some of these foods. Now that I am less symptomatic I have started to add back some other fruits and veggies.
Mary Beth
I am familiar with FODMAP and also follow the diet guidelines. I have a dietitian friend in Australia, where FODMAP research is being done, and she gave me this updated list of acceptable FODMAP fruits and veggies:
The FODMAPs friendly fruits are :
Banana, kiwi, strawberries, blueberries, grapes, lemon, oranges, mandarins (clementines), canteloupe, paw paw (papaya), pineapple, raspberry, rhubarb and tangelo. If you have fructose malabsorption you should limit intake to 1 serve per sitting or a small handful.
The suitable vegetables are:
Bok choy, capscicum (bell peppers), carrot, celery, chives, choko, choy sum, corn, cucumber, eggplant, endive, green part of spring onion, ginger, green beans, lettuce (coral ad ice berg), olives, potato, parsnip, pumpkin, silverbeet (swiss chard), tomatom, zucchini.
I saw definite improvement after restricting some of these foods. Now that I am less symptomatic I have started to add back some other fruits and veggies.
Mary Beth
Hello all,
For those of us dealing with mast cell issues, I'm curious about your thoughts on flu shots, both seasonal and H1N1. Has anyone spoken to their doctor about additional vaccine risks for patients with mast cell disorders? (Particularly with the H1N1.) I'm going to ask my GI doc about it tomorrow, but I wondered if others had already discussed this with their doctor. (Actually, I think the allergist is probably the better physician to ask this question, but I don't have an appt with him anytime soon.)
I'm guessing my doctor will say whatever risks there may be, the benefit of the vaccines far outweigh those risks. I'll know more tomorrow...let you know then what he says. In the meantime, any thoughts?
Be well,
Julie
For those of us dealing with mast cell issues, I'm curious about your thoughts on flu shots, both seasonal and H1N1. Has anyone spoken to their doctor about additional vaccine risks for patients with mast cell disorders? (Particularly with the H1N1.) I'm going to ask my GI doc about it tomorrow, but I wondered if others had already discussed this with their doctor. (Actually, I think the allergist is probably the better physician to ask this question, but I don't have an appt with him anytime soon.)
I'm guessing my doctor will say whatever risks there may be, the benefit of the vaccines far outweigh those risks. I'll know more tomorrow...let you know then what he says. In the meantime, any thoughts?
Be well,
Julie
Julie,
I can't get the flu vaccine - had a huge reaction, so I'll be relying on Vitamin D, handwashing and face masks, if needed (I ordered them months ago - I hear there is a shortage now). I am not sure what caused my reaction . . . the eggs that are used in the process are a possible culprit. Lately I have been thinking that my histamine load was just too high on that particular day. I remember clearly that I had spicy tuna rolls and wine the night before I had the shot. If you get one, possibly take 25-50 mg benadryl, just in case.
From what I hear there is a shortage of the H1N1 vaccine/nasal mist. I called my pediatrician yesterday to see about getting my 10 year old vaccinated - he has asthma (asymptomatic since diet changes). I was told they are out of seasonal flu vaccine and they are only giving flu mist to healthy 2-3 year olds per CDC protocol. They just said to check back periodically. The media is constantly showing tragic cases and telling people to get vaccinated, but there is no vaccine. So, for now we are starting to bump up our vitmain D. Dr. Cannell recommends 5000 IU for adults and 2000 IU for children over age 2.
This year's vaccine does not have adjuvant added to it. Adjuvants are intended to stretch the vaccine by stimulating the immune system. I would think adjuvants would be contraindicated for people with mast cell disorders.
Mary Beth
I can't get the flu vaccine - had a huge reaction, so I'll be relying on Vitamin D, handwashing and face masks, if needed (I ordered them months ago - I hear there is a shortage now). I am not sure what caused my reaction . . . the eggs that are used in the process are a possible culprit. Lately I have been thinking that my histamine load was just too high on that particular day. I remember clearly that I had spicy tuna rolls and wine the night before I had the shot. If you get one, possibly take 25-50 mg benadryl, just in case.
From what I hear there is a shortage of the H1N1 vaccine/nasal mist. I called my pediatrician yesterday to see about getting my 10 year old vaccinated - he has asthma (asymptomatic since diet changes). I was told they are out of seasonal flu vaccine and they are only giving flu mist to healthy 2-3 year olds per CDC protocol. They just said to check back periodically. The media is constantly showing tragic cases and telling people to get vaccinated, but there is no vaccine. So, for now we are starting to bump up our vitmain D. Dr. Cannell recommends 5000 IU for adults and 2000 IU for children over age 2.
This year's vaccine does not have adjuvant added to it. Adjuvants are intended to stretch the vaccine by stimulating the immune system. I would think adjuvants would be contraindicated for people with mast cell disorders.
Mary Beth
I finally heard from the lab that messed up my histmaine test. It was supposed to be frozen and they didn't do it, so I must repeat it. Fun, fun, fun!
I emailed Dr. Greenberger my results and he responded and told me to still take 300 mg zantac daily and zyrtec twice daily. I had already taken 75 mg zantac so I popped another in my mouth and within 5 minutes I was having tachycardia, sweating and throat swelling. After a little research I found a 2007 American Journal of Clinical Nutrition article (by Maintz and Novak) on histamine intolerance that said that H2 blockers (they specifically said cimetidine, but I am guessing raniditidine could do the same) could cause a histamine reaction. This is a good article - recommend you read it. Also, Jonathon Brostoff's book "Food Allergies and Food Intolerance" is really good.
I think I have discovered the cause of my itching - bananas. I'll test it out one more time to make sure. I used to look forward to "banana day". I have been eating grapefuit, lemon and lime and haven't noticed a problem. Do any of you have symptoms with citrus?
I am going to order some HistoXym and give it a try. Everything seems to be pointing to histamine intolerance, so I might as well test it out.
Mary Beth
I emailed Dr. Greenberger my results and he responded and told me to still take 300 mg zantac daily and zyrtec twice daily. I had already taken 75 mg zantac so I popped another in my mouth and within 5 minutes I was having tachycardia, sweating and throat swelling. After a little research I found a 2007 American Journal of Clinical Nutrition article (by Maintz and Novak) on histamine intolerance that said that H2 blockers (they specifically said cimetidine, but I am guessing raniditidine could do the same) could cause a histamine reaction. This is a good article - recommend you read it. Also, Jonathon Brostoff's book "Food Allergies and Food Intolerance" is really good.
I think I have discovered the cause of my itching - bananas. I'll test it out one more time to make sure. I used to look forward to "banana day". I have been eating grapefuit, lemon and lime and haven't noticed a problem. Do any of you have symptoms with citrus?
I am going to order some HistoXym and give it a try. Everything seems to be pointing to histamine intolerance, so I might as well test it out.
Mary Beth
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faithberry
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faithberry
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Mary Beth,
What a hassle with your histamine metabolite urine test. Ugh!
What a scary reaction. Do you think you are reacting to the Zantac itself or one of the 'other' ingredients? I'm just surprised by a Zantac reaction since it seems so well tolerated by people with mast cell problems, but we are all unique and can react to anything. I've read the Maintz article many times and I thought the problem was specific to the chemical structure of cimetidine, but perhaps I misunderstood. I would understand if you feel hesitant to take a Zantac again!!!!
I have problems with lemon and oranges. I don't eat any citrus fruits. Are you doing the histamine-restricted diet? I know lemon, lime, and grapefruit are OK on the older version of the diet. I noticed the version in the newer book, Dealing with Food Allergies 2003 has some changes. It includes blueberries in the No section, for example, but I don't know if there is anything else different.
Bananas are confusing. The are OK on the Vickerstaff histamine-restricted diet, but not OK on the www.histame.com histamine avoid list. They contain 3 other amines, and I'm not sure if these are amines that also use the diamine oxidase pathway in which case they would be competing for the enzyme and possibly adding to a histamine build up. They are not allowed on the salicylate/amines/glutamate elimination diet from Royal Prince Alfred Hospital in Australia. Lemons contain octopamine and synephrin and again I'm not sure if they use the same pathway or interact with it in anyway. You may not react to them individually but I wonder if they are adding to the build up of histamine in your histamine bucket some way. I have problems with bananas. I think that's probably due to fructose malabsorption. Even if they are OK for some with FM, I've learned there are many people with FM that cannot tolerate fruit at all. I think I'm in that category!
I found the chapter on histamine intolerance in the Vickerstaff-Joneja book, Dealing with Food Allergies, one of the best. It doesn't address masto, but it helps to understand other factors that contribute to histamine intolerance. She also has an excellent article on Histamine Intolerance that can be downloaded from the Q and A section of her website (Vickerstaff Healthservices).
Hope you are feeling better.
What a hassle with your histamine metabolite urine test. Ugh!
What a scary reaction. Do you think you are reacting to the Zantac itself or one of the 'other' ingredients? I'm just surprised by a Zantac reaction since it seems so well tolerated by people with mast cell problems, but we are all unique and can react to anything. I've read the Maintz article many times and I thought the problem was specific to the chemical structure of cimetidine, but perhaps I misunderstood. I would understand if you feel hesitant to take a Zantac again!!!!
I have problems with lemon and oranges. I don't eat any citrus fruits. Are you doing the histamine-restricted diet? I know lemon, lime, and grapefruit are OK on the older version of the diet. I noticed the version in the newer book, Dealing with Food Allergies 2003 has some changes. It includes blueberries in the No section, for example, but I don't know if there is anything else different.
Bananas are confusing. The are OK on the Vickerstaff histamine-restricted diet, but not OK on the www.histame.com histamine avoid list. They contain 3 other amines, and I'm not sure if these are amines that also use the diamine oxidase pathway in which case they would be competing for the enzyme and possibly adding to a histamine build up. They are not allowed on the salicylate/amines/glutamate elimination diet from Royal Prince Alfred Hospital in Australia. Lemons contain octopamine and synephrin and again I'm not sure if they use the same pathway or interact with it in anyway. You may not react to them individually but I wonder if they are adding to the build up of histamine in your histamine bucket some way. I have problems with bananas. I think that's probably due to fructose malabsorption. Even if they are OK for some with FM, I've learned there are many people with FM that cannot tolerate fruit at all. I think I'm in that category!
I found the chapter on histamine intolerance in the Vickerstaff-Joneja book, Dealing with Food Allergies, one of the best. It doesn't address masto, but it helps to understand other factors that contribute to histamine intolerance. She also has an excellent article on Histamine Intolerance that can be downloaded from the Q and A section of her website (Vickerstaff Healthservices).
Hope you are feeling better.
Faith
LC (in remission)
LC (in remission)
Mary Beth,
Is this the article, or a different one?
http://www.ajcn.org/cgi/content/full/85/5/1185
How about this article?
http://www.springerlink.com/content/b0txx797aqyrx0yp/
That makes it sound as though extemsive histamine production with MC may be routine. Perhaps it's failed metabolism of histamine, that causes additional problems with those of us who have histamine issues, rather than the histamine production itself.
Kimberley,
If you happen to be reading this post, note the following quote, from the article at the first link, above:
This is also confirmed by measuring DAO levels in UC patients:
http://www.springerlink.com/content/j2u81616vm6t2njr/
Tex
Is this the article, or a different one?
http://www.ajcn.org/cgi/content/full/85/5/1185
How about this article?
http://www.springerlink.com/content/b0txx797aqyrx0yp/
That makes it sound as though extemsive histamine production with MC may be routine. Perhaps it's failed metabolism of histamine, that causes additional problems with those of us who have histamine issues, rather than the histamine production itself.
Kimberley,
If you happen to be reading this post, note the following quote, from the article at the first link, above:
Diamine oxidase may be the key, in some cases.In pregnancy, DAO is produced at very high concentrations by the placenta (119, 120), and its concentration may become 500 times that when the woman is not pregnant (120). This increased DAO production in pregnant women may be the reason why, in women with food intolerance, remissions frequently occur during pregnancy (14).
This is also confirmed by measuring DAO levels in UC patients:
http://www.springerlink.com/content/j2u81616vm6t2njr/
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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faithberry
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One thing that is finally dawning on me is how damaged my small intestines are, probably due to undiagnosed gluten and casein intolerance for a number of years. No wonder I can eat hardly anything.
Tex wrote:
That last line seem to encapsulate my story. I keep trying foods again and again and end up getting nowhere. I think I need to find a super-simple way of eating and stick with that for an extended period like Tex did.
I'm writing this here to offer it as food for thought for those of us with mast cell issues. It seems if our mast cells are going so wacky, we may be more damaged in our guts than we might imagine. Instead of trying to add foods back in, keeping it simple may be the way to heal. Of course, we are all different. Like Tex says, some of us just have lactose deficiency...but then others have got the whole hog.
I can say for certain that I am better than I was a year ago, so at least I'm pointed in the right direction.
All the best,
Tex wrote:
He once told me that to get his MC under control, he only ate chicken, pork, eggs, a tiny bit of green beans and a tiny bit of brocolli now and then and a little white rice for 9 months. He said that before he got onto this simple regime, he kept trying foods again and again and each time it just irritated his gut and set him back further.Along with your quote listing the causes of fructose intolerance, it appears to me that fructose intolerance is a natural result of small intestinal enteritis, (from any cause). As inflammation/damage to the villi progresses, first lactase production is virtually terminated, and as the damage progressively increases, production of the other sugar-splitting enzymes is sequentially curtailed. Some people with MC only have to worry about lactase deficiency, while others, at the other extreme, (myself included), can handle only the most minimal amounts of just about any type of sugar, while reacting.
That last line seem to encapsulate my story. I keep trying foods again and again and end up getting nowhere. I think I need to find a super-simple way of eating and stick with that for an extended period like Tex did.
I'm writing this here to offer it as food for thought for those of us with mast cell issues. It seems if our mast cells are going so wacky, we may be more damaged in our guts than we might imagine. Instead of trying to add foods back in, keeping it simple may be the way to heal. Of course, we are all different. Like Tex says, some of us just have lactose deficiency...but then others have got the whole hog.
I can say for certain that I am better than I was a year ago, so at least I'm pointed in the right direction.
All the best,
Faith
LC (in remission)
LC (in remission)
I agree with everything you said. Today I was thinking about how my GI tract must be so damaged because I apparently have lost alot of enzyme function. In addition to histamines I have trouble with fructose, sulfites, salicylates, gluten, dairy, soy, and probably lectins. I do best when I stick with certain foods, but I am still willing to try some new things. I just don't do it very often.
Mary Beth
Mary Beth
Tex,
Thanks for posting the article - it's the first one.
The article really helped me understand my symptoms. I believe my siblings and I have a genetic predisposition to impaired histamine metabolism. I have GI symptoms primarily, my brother has asthma-like symptoms, and my sister has urticaria, but the root cause is the same. I think we got a double-whammy because we are certain our mother had this and she died of colorectal cancer and we have a cousin on my father's side who we know has chronic urticaria and the same symptoms as my sister.
My symptoms actually started in 2006 when I got GERD, but I was just put on Nexium and told not to eat spicy food, but really I now know it was caused by histamine and gut damage/reduced DAO activity. One year later I had the flu shot reaction and I think it was due to histamine overload . . . the sushi and wine the night before sent me over the edge (oh, and who knows what I ate for breakfast that day or if I took any drugs - just can't remember). Or maybe I had PMS. I now know that PMS is a trigger. For years I struggled with gyn problems, like terrible PMS headaches, fibroids etc. My sister had a bilateral oophorectomy a few years ago and was put on an esrogen patch. She then develped the chronic urticaria after gallbladder surgery - they gave her morphine and she thinks thinks this triggered the chronic urticaria. A few weeks ago she cut her estrogen in half and immediately saw improvements in her hives and food tolerance. Dr. Fine beleives there is a connection with estrogen and MC . . . could histamine be involved in some way? Surely people with GI damage have reduced enzyme activity - we see it with fructose, lactose etc, so why not DAO as well? So when people heal their guts they regain normal function, whereas I don't think I will fully regain function due to a genetic predisposition.
Do any of you take B6 or Vitamin C? I am considring the Spectracell test next, but am now thinking of adding more of these after reading this article. I'm also considering the HistoXym.
As for the banana/itching problem, I am wondering if the banana was just too overripe? It doesn't happen all of the time, so again, maybe my load was just too high. I think maybe the same is true for the ranitidine . . . one pill didn't bother me, but two did. I have always been super-sensitive to drugs and really am the size of a 12 year old, so I may have just had too much.
I think the histamine free diet is a starting place, but I do believe there is individual variation and we react to different things, which is why Faith reacts to citrus and I do not. There are so many confounding variables as well . . .hormones, drugs, other triggers, the age of the food we eat, etc , but at least I feel we are all on the right path to getting better.
Mary Beth
Thanks for posting the article - it's the first one.
The article really helped me understand my symptoms. I believe my siblings and I have a genetic predisposition to impaired histamine metabolism. I have GI symptoms primarily, my brother has asthma-like symptoms, and my sister has urticaria, but the root cause is the same. I think we got a double-whammy because we are certain our mother had this and she died of colorectal cancer and we have a cousin on my father's side who we know has chronic urticaria and the same symptoms as my sister.
My symptoms actually started in 2006 when I got GERD, but I was just put on Nexium and told not to eat spicy food, but really I now know it was caused by histamine and gut damage/reduced DAO activity. One year later I had the flu shot reaction and I think it was due to histamine overload . . . the sushi and wine the night before sent me over the edge (oh, and who knows what I ate for breakfast that day or if I took any drugs - just can't remember). Or maybe I had PMS. I now know that PMS is a trigger. For years I struggled with gyn problems, like terrible PMS headaches, fibroids etc. My sister had a bilateral oophorectomy a few years ago and was put on an esrogen patch. She then develped the chronic urticaria after gallbladder surgery - they gave her morphine and she thinks thinks this triggered the chronic urticaria. A few weeks ago she cut her estrogen in half and immediately saw improvements in her hives and food tolerance. Dr. Fine beleives there is a connection with estrogen and MC . . . could histamine be involved in some way? Surely people with GI damage have reduced enzyme activity - we see it with fructose, lactose etc, so why not DAO as well? So when people heal their guts they regain normal function, whereas I don't think I will fully regain function due to a genetic predisposition.
Do any of you take B6 or Vitamin C? I am considring the Spectracell test next, but am now thinking of adding more of these after reading this article. I'm also considering the HistoXym.
As for the banana/itching problem, I am wondering if the banana was just too overripe? It doesn't happen all of the time, so again, maybe my load was just too high. I think maybe the same is true for the ranitidine . . . one pill didn't bother me, but two did. I have always been super-sensitive to drugs and really am the size of a 12 year old, so I may have just had too much.
I think the histamine free diet is a starting place, but I do believe there is individual variation and we react to different things, which is why Faith reacts to citrus and I do not. There are so many confounding variables as well . . .hormones, drugs, other triggers, the age of the food we eat, etc , but at least I feel we are all on the right path to getting better.
Mary Beth
Mary Beth,
Sorry for my confusing wording - I only listed the second link because of what it implied.
Here's an interesting article on how Nutrients regulate diamine oxidase release from intestinal mucosa.
http://ajpregu.physiology.org/cgi/conte ... 275/4/R969
On a related issue:
Hmmmmmmm. You can even buy ELISA test kits for DAO, (scroll down to the bottom of the page, for the human DAO test kits), if you want to perform tests yourself, (of course, these are not offered for individual consumers, but it's not that difficult to learn to use these tests, if you know a bit about basic chemistry - I've used ELISA test kits to test for mycotoxins in food corn, in the past).
http://www.cosmobio.co.jp/export_e/prod ... 091014.asp
Tex
Sorry for my confusing wording - I only listed the second link because of what it implied.
Here's an interesting article on how Nutrients regulate diamine oxidase release from intestinal mucosa.
I gather that means that DAO in not involved in fat malabsorption, then. OK, they used mixtures of lipid emulsions that contained "triolein, oleic acid, or tricaprylin and solutions of carbohydrate and protein", in the test. So what does that imply, in terms of foods that we might eat, in order to enhance DAO production?According to our observations, only lipids increase intestinal lymph diamine oxidase. Nonfat nutrients appear to increase diamine oxidase in the intestinal lumen. Diamine oxidase is not directly required for lipid absorption.
http://ajpregu.physiology.org/cgi/conte ... 275/4/R969
On a related issue:
http://humupd.oxfordjournals.org/cgi/co ... act/dmn014The balance between histamine and DAO seems to be crucial for an uncomplicated course of pregnancy. Reduced DAO activities have been found in multiple heterogeneous complications of pregnancy such as diabetes, threatened and missed abortion and trophoblastic disorders. Whether women with histamine intolerance suffer from more complicated pregnancies and higher abortion rates due to impaired DAO activities and if low DAO levels or genetic modifications in the DAO gene might therefore represent a prognostic factor for a higher risk of abortion, has not been investigated yet.
Hmmmmmmm. You can even buy ELISA test kits for DAO, (scroll down to the bottom of the page, for the human DAO test kits), if you want to perform tests yourself, (of course, these are not offered for individual consumers, but it's not that difficult to learn to use these tests, if you know a bit about basic chemistry - I've used ELISA test kits to test for mycotoxins in food corn, in the past).
http://www.cosmobio.co.jp/export_e/prod ... 091014.asp
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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faithberry
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Mary Beth,
Thanks for posting more of your background. It's interesting to see the interconnections in your family. My sister has allergies and motion sickness. She's the only one in our family, but I would guess that my father might have had IBS a good part of his life.
You said-
I submitted a question about the role of HNMT and DAO (the two histamine processing enzymes) in Masto and MCAD to the mast cell specialists at the TMS conference, but I wasn't at the conference so I don't know if it was answered. I don't know whether they would accept the notion of histamine intolerance at this stage.
I completely agree with you that the histamine restricted diet is a good place to start if we have too much histamine running around in our system, but as you say our intolerances vary from individual to individual due to different genetics, nutrient deficiencies, etc. The key with histamine and some of these other intolerances is that they are threshold-related, so you might not react to a food one day, but will the next when you reach your threshold.
I think we CAN all get better! There are many people that have done so with different diets like the Specific Carbohydrate Diet or the Histamine-Restricted Diet, Fructose Malabsorption Diet, etc., etc. The trick is figuring out one's own mix of intolerances, which you have done to a great degree. I don't know if I will ever regain full function, but I will probably be eating a much healthier diet!!!! It's a long road home, but Tex is a great inspiration as are many other people in this group.
BTW, in the Vickerstaff-Joneja article on histamine intolerance (can be downloaded from her website), she says that lectins can liberate mast cells directly (without IgE mediation) and in her diet she says sulfites MAY also have an effect on histamine release. Glutamates do as well. I've also read that salicylates may have an inhibiting effect on DAO, but the research was a little difficult to understand so I can't verify that completely. And she also talks about how bacteria in the gut produce histamines too, which I think can be an issue with the fructose malabsorption. I noticed that several people on that support group have histamine-like symptoms.
I hope you don't feel discouraged. It can seem overwhelming at times, but as you say, we are pointed in the right direction. I really appreciate walking on this path with you.
Thanks for posting more of your background. It's interesting to see the interconnections in your family. My sister has allergies and motion sickness. She's the only one in our family, but I would guess that my father might have had IBS a good part of his life.
You said-
I think the Maintz article confirms your belief that DAO is impaired through GI damage, although her article is still considered at the research level.Surely people with GI damage have reduced enzyme activity - we see it with fructose, lactose etc, so why not DAO as well? So when people heal their guts they regain normal function, whereas I don't think I will fully regain function due to a genetic predisposition.
BTW, I just found out yesterday that fructose absorption does not involve an enzyme, but rather it's due to a deficient protein transporter GLUT5.Thus, histamine intolerance seems to be acquired mostly through the impairment of DAO activity caused by gastrointestinal diseases or through the inhibition of DAO, but the high interindividual variations in the expression of DAO in the gut and the association of SNPs in the DAO gene with gastrointestinal diseases provide evidence for a genetic predisposition in a subgroup of patients with histamine intolerance(27).
I submitted a question about the role of HNMT and DAO (the two histamine processing enzymes) in Masto and MCAD to the mast cell specialists at the TMS conference, but I wasn't at the conference so I don't know if it was answered. I don't know whether they would accept the notion of histamine intolerance at this stage.
I completely agree with you that the histamine restricted diet is a good place to start if we have too much histamine running around in our system, but as you say our intolerances vary from individual to individual due to different genetics, nutrient deficiencies, etc. The key with histamine and some of these other intolerances is that they are threshold-related, so you might not react to a food one day, but will the next when you reach your threshold.
I think we CAN all get better! There are many people that have done so with different diets like the Specific Carbohydrate Diet or the Histamine-Restricted Diet, Fructose Malabsorption Diet, etc., etc. The trick is figuring out one's own mix of intolerances, which you have done to a great degree. I don't know if I will ever regain full function, but I will probably be eating a much healthier diet!!!! It's a long road home, but Tex is a great inspiration as are many other people in this group.
BTW, in the Vickerstaff-Joneja article on histamine intolerance (can be downloaded from her website), she says that lectins can liberate mast cells directly (without IgE mediation) and in her diet she says sulfites MAY also have an effect on histamine release. Glutamates do as well. I've also read that salicylates may have an inhibiting effect on DAO, but the research was a little difficult to understand so I can't verify that completely. And she also talks about how bacteria in the gut produce histamines too, which I think can be an issue with the fructose malabsorption. I noticed that several people on that support group have histamine-like symptoms.
I hope you don't feel discouraged. It can seem overwhelming at times, but as you say, we are pointed in the right direction. I really appreciate walking on this path with you.
Faith
LC (in remission)
LC (in remission)
Help!
I'm struggling, and I need some suggestions, ideas and thoughts from my far more experienced counterparts.
As I have mentioned in previous posts, the nausea and fatigue has returned of late. My GI doc's take on this when I saw him on Friday was that maybe my ME is secondary to some other problem; perhaps allergies he theorized. He wants me to go back up to Hopkins and see the allergist. (I was supposed to already have done this, but I just haven't felt well enough.) So, tomorrow I'll call and get on the books with the allergist.
Over the past few days (and this is really the reason behind my post today) it seems I can't eat ANYTHING without getting an itchy mouth and lips. Sometimes the itching will include my face and neck as well. My lips and mouth feel awful, as if they have been burned (think sunburned lips and burning your mouth on hot food) and this lasts for hours after I have eaten. I got up this morning and for the first time in days was able to stomach cereal. The cereal is gluten free and I have never had trouble with milk. It went down fine, but sure enough, here I am two hours later and my mouth and lips are on fire again. AAAAGGGHHHH!
I do not understand why foods that I have eaten without problem for years are now triggering this response. I'm assuming this problem is related to histamine, but honestly I'm on so much anti-histamine I don't understand how this can be happening. I'm so frustrated and I am about ready to just give up on eating at this point. I dealt with this same problem back in the spring, before I got diagnosed, and I just lived on Benadryl around the clock until the symptoms passed, which took several weeks. I guess for whatever reason I'm in that cycle again now.
Faith, I know you have talked about the threshold issue with histamine. Do you think this could be behind the return of these symptoms? If so, how do I best deal with the problem when it arises and/or prevent it altogether? Also, if anyone has suggestions on specialized tests the allergist can run, please let me know.
As always, thanks for your thoughts and guidance.
Julie
"Sick and tired of being sick and tired"
I'm struggling, and I need some suggestions, ideas and thoughts from my far more experienced counterparts.
As I have mentioned in previous posts, the nausea and fatigue has returned of late. My GI doc's take on this when I saw him on Friday was that maybe my ME is secondary to some other problem; perhaps allergies he theorized. He wants me to go back up to Hopkins and see the allergist. (I was supposed to already have done this, but I just haven't felt well enough.) So, tomorrow I'll call and get on the books with the allergist.
Over the past few days (and this is really the reason behind my post today) it seems I can't eat ANYTHING without getting an itchy mouth and lips. Sometimes the itching will include my face and neck as well. My lips and mouth feel awful, as if they have been burned (think sunburned lips and burning your mouth on hot food) and this lasts for hours after I have eaten. I got up this morning and for the first time in days was able to stomach cereal. The cereal is gluten free and I have never had trouble with milk. It went down fine, but sure enough, here I am two hours later and my mouth and lips are on fire again. AAAAGGGHHHH!
I do not understand why foods that I have eaten without problem for years are now triggering this response. I'm assuming this problem is related to histamine, but honestly I'm on so much anti-histamine I don't understand how this can be happening. I'm so frustrated and I am about ready to just give up on eating at this point. I dealt with this same problem back in the spring, before I got diagnosed, and I just lived on Benadryl around the clock until the symptoms passed, which took several weeks. I guess for whatever reason I'm in that cycle again now.
Faith, I know you have talked about the threshold issue with histamine. Do you think this could be behind the return of these symptoms? If so, how do I best deal with the problem when it arises and/or prevent it altogether? Also, if anyone has suggestions on specialized tests the allergist can run, please let me know.
As always, thanks for your thoughts and guidance.
Julie
"Sick and tired of being sick and tired"
Hi Julie,
Hopefully, you'll get some responses from members who know more about this, but I though that I should point out that at least one of the symptoms that you describe, (a burning sensation in your mouth), can be, (and probably is), a neurological symptom, rather than a "normal" allergic reaction.
During the process of digestion, casein and gluten are partially broken down into substances called opioids which have a chemical structure similar to morphine. It has been hypothesized that these opioids, called casomorphin, gluteomorphin and gliadinomorphin, could have an effect on the central nervous system. Many of us with MC have the leaky gut syndrome, (LGS), and when LGS is present, those opioids can freely enter the blood stream, and it is believed that they can freely cross the blood/brain barrier. (It is known that the gluten counterparts can cross the blood/brain barrier, and it is suspected that casein has the same potential).
Anyway, after all the permanent peripheral neoropathy that I've accrued from gluten, (and MSG), I'm a little gun shy about things that shouldn't, but do, cross the blood/brain barrier. (I've experienced the burning sensation that you describe, but it was on the soles of my feet, not in my mouth).
I'm just thinking out loud, here, and, of course, I have no way to tell if this directly applies to you, but it's a possibility to be considered.
Tex
Hopefully, you'll get some responses from members who know more about this, but I though that I should point out that at least one of the symptoms that you describe, (a burning sensation in your mouth), can be, (and probably is), a neurological symptom, rather than a "normal" allergic reaction.
During the process of digestion, casein and gluten are partially broken down into substances called opioids which have a chemical structure similar to morphine. It has been hypothesized that these opioids, called casomorphin, gluteomorphin and gliadinomorphin, could have an effect on the central nervous system. Many of us with MC have the leaky gut syndrome, (LGS), and when LGS is present, those opioids can freely enter the blood stream, and it is believed that they can freely cross the blood/brain barrier. (It is known that the gluten counterparts can cross the blood/brain barrier, and it is suspected that casein has the same potential).
Anyway, after all the permanent peripheral neoropathy that I've accrued from gluten, (and MSG), I'm a little gun shy about things that shouldn't, but do, cross the blood/brain barrier. (I've experienced the burning sensation that you describe, but it was on the soles of my feet, not in my mouth).
I'm just thinking out loud, here, and, of course, I have no way to tell if this directly applies to you, but it's a possibility to be considered.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.