Julie,
So sorry for these miserable symptoms you are having. Why don't you post your question on the The Mastocytosis Society Yahoo Group (TMS online support, yahoo group) and see if anyone there has this same experience or feedback. The folks there have had every symptom imaginable. You are having systemic symptoms and it's possible you do have MCAD (even if your doctor doesn't think so) so you should feel free to use their site regardless of what was said about ME. They are a great group and will try to help. They can also suggest tests that the allergist might run. The forum isn't so active on the weekend though.
Gypsy Princess has some similar symptoms with tongue itching, etc. not sure if it burns too. You could leave a question on her blog. Don't know how often she checks comments. She's at: gypsyprincessa.blogspot.com
I'm pretty sure that someone from the TMS group will be able to give you some insight into this. I've never had symptoms like this myself. Mast cells release many more chemical mediators than histamine, so there are other mast cell chemicals that could be causing this problem for you. Or it could be too much histamine floating around too. It's important to get the right mix of medicine and your symptoms are clearly going beyond your GI tract. You might need more than antihistamines.
The other thing that comes to mind is Oral Allergy Syndrome, which you can easily google. That has to do with specific raw fruits (I think) so it should be pretty clear if it's relevant or not.
It's probably a good idea not to eat much for awhile, just like your body is telling you, to help take the load off your system, if you are OK with that. When Val at TMS has a reaction she has 4 safe foods she always goes back to that are something like the BRAT diet...toast, applesauce, chicken, and bananas. Those are safe for her. I don't know what would work for you, but if you eat you probably want to keep it super simple for now. Probably didn't have to tell you that:) That's probably a good idea to start on as soon as you start a cycle of nausea symptoms.
I think it's really good for you to see the allergist. I just wish you could see Dr. Metcalfe (if he believes in MCAD)or one of the specialists in Boston so you could get a proper diagnosis. It seems a little more than coincidental that you have extra mast cells in the colon and then you suddenly have this separate problem. I could be wrong, but seems likely they are connected. I seem to remembering hearing these kinds of symptoms from TMS people.
2 other things, which you probably don't have the energy for now but maybe can slowly think about. First, do you know what all your triggers are (food, environmental, smells, etc.)? You might want to reflect back and consider what might have got this cycle going, so you can avoid it in the future. Not always easy to identify.
Second, are you on the histamine-restricted diet? We know you have too many mast cells so we know you probably have too much histamine in the system. The histamine-restricted diet is a way to decrease your burden of histamine so you are not adding any extra to the system. Here's the link: http://www.urticaria.thunderworksinc.co ... tamine.htm
The diet won't necessarily make your symptoms disappear completely, but it can help to reduce them. People with mast cell problems say they get triggered by any foods. The foods on the diet are not necessarily triggers (though some probably are), but it's just a way to keep the histamine load lower.
Aside from that, try to stay home (or some place safe) and quiet and take it easy.
I wish I could explain why you are suddenly reacting to foods that have been fine before, but I'm not sure there's an answer. I know when I'm unwell, it seems any food I put in does not go well.
I hope this eases for you soon. Hugs!
PS I do have a lot of nerve problems, probably gluten-induced, like Tex suggests. This sounds different to me, but if the allergist doesn't have ideas it might be another road to explore. Histamine does cause burning sensations.
Mastocytic Enterocolitis
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faithberry
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Mary Beth and Julie,
I just looked at the 2003 version of the Histamine Restricted Diet in the book Dealing with Food Allergies, A Practical Guide...by Janine Vickerstaff Joneja. This is the updated version of the diet, several years newer than the one at the International Urticaria Society website.I just peaked at the charts using Amazon look inside (around page 252).
In this version, grapefruits, lemons, and limes are now on the avoid list. I was looking for myself because these would be the best fruits I could try on the Low Fructose Diet.
Mary Beth, I realize for you it may not be as much of an issue to be on the histamine-restricted since your serum tryptase is not elevated, although we don't know about your 24-hour urine test yet. But you might want to take it into account when you are having a reaction.
The newer version of the book is obviously better than the ICUS website. Does the book you recommended also have a histamine restricted diet, Mary Beth?
I just looked at the 2003 version of the Histamine Restricted Diet in the book Dealing with Food Allergies, A Practical Guide...by Janine Vickerstaff Joneja. This is the updated version of the diet, several years newer than the one at the International Urticaria Society website.I just peaked at the charts using Amazon look inside (around page 252).
In this version, grapefruits, lemons, and limes are now on the avoid list. I was looking for myself because these would be the best fruits I could try on the Low Fructose Diet.
Mary Beth, I realize for you it may not be as much of an issue to be on the histamine-restricted since your serum tryptase is not elevated, although we don't know about your 24-hour urine test yet. But you might want to take it into account when you are having a reaction.
The newer version of the book is obviously better than the ICUS website. Does the book you recommended also have a histamine restricted diet, Mary Beth?
Faith
LC (in remission)
LC (in remission)
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faithberry
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Mary Beth,
There is a test used in some countries in Europe and now starting in the UK for serum levels of diamine oxidase, radio extraction assays using [3H]-labelled putrescine-dihydrochloride as a substrate. The serum levels correlate with DAO activity in the gut.
I know this doesn't help you now in the US, but I expect there may be an application pending for making the test available in the US so maybe we should keep our eyes open. Or check with the company that makes the DAO you plant to try. The test was developed by the folks that developed the enzyme supplement and it would be in their financial interest if people were able to get the testing done as well.
All the best,
There is a test used in some countries in Europe and now starting in the UK for serum levels of diamine oxidase, radio extraction assays using [3H]-labelled putrescine-dihydrochloride as a substrate. The serum levels correlate with DAO activity in the gut.
I know this doesn't help you now in the US, but I expect there may be an application pending for making the test available in the US so maybe we should keep our eyes open. Or check with the company that makes the DAO you plant to try. The test was developed by the folks that developed the enzyme supplement and it would be in their financial interest if people were able to get the testing done as well.
All the best,
Faith
LC (in remission)
LC (in remission)
Faith,
Dr. Brostoff's book does mention foods that can trigger mast cells to degranualte and this is what he calls false food allergy. He believes lectins do this, in addition to causing leaky gut. He also recognizes, egg white, strawberries, crustaceans/shellfish, tomatoes, fish, pork, alcohol and chocolate. He also includes fresh pineapple and papaya because of their proteolytic enzymes. Other questionable foods are mango, sunflower seeds, mustard and buckwheat.
He goes on to recognize histamines in food (cheese, wine, fish, sausage etc) but differentialtes this from the process of triggering mast cells, although the end rsult is the same. He states that leaky gut makes high histamine foods problematic. I think I may react to both sers of foods. I am on a trial of no citrus to see if it makes a difference.
I have the Vickerstaff book as well - both are good.
My sister with CU got her labs back and tryptase and histamine were normal but prostaglandin was very high. I will redo my urine collection this weekend.
Mary Beth
Dr. Brostoff's book does mention foods that can trigger mast cells to degranualte and this is what he calls false food allergy. He believes lectins do this, in addition to causing leaky gut. He also recognizes, egg white, strawberries, crustaceans/shellfish, tomatoes, fish, pork, alcohol and chocolate. He also includes fresh pineapple and papaya because of their proteolytic enzymes. Other questionable foods are mango, sunflower seeds, mustard and buckwheat.
He goes on to recognize histamines in food (cheese, wine, fish, sausage etc) but differentialtes this from the process of triggering mast cells, although the end rsult is the same. He states that leaky gut makes high histamine foods problematic. I think I may react to both sers of foods. I am on a trial of no citrus to see if it makes a difference.
I have the Vickerstaff book as well - both are good.
My sister with CU got her labs back and tryptase and histamine were normal but prostaglandin was very high. I will redo my urine collection this weekend.
Mary Beth
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faithberry
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Mary Beth,
Thanks for the info from the Brostoff book. Interesting about buckwheat, in Chinese medicine it's said to be counter-indicated for nerve problems as are eggs. I can't tolerate buckwheat at all and neither can my husband although I used to eat it without a problem in the old days.
I don't know if you've seen any of the work by Dr. Theosaccarides (or something like that, there is a link from the old TMS site) on the selective release of mediators from mast cells. According to his research, mast cells can be triggered to release some mediators but not others. This comes to mind given your sisters high prostaglandin, but normal tryptase and histamine.
Let us know how it goes with the citrus trial. I am on my first week of FODMAPs type diet, just eating chicken, rice, and clarified butter to try to get a symptom free baseline. I had a few screw ups so I'm not there yet. But it's clear that it's the veggies and fruits that are my problem and even small amounts give me clear symptoms. I inadvertently had about a 1/4th tsp. of pear juice and just that amount gave me symptoms including abdominal pain. But that's like mainlining fructose, so what did I expect!
I got my labs back that I had done just two or three days ago and my C-reactive protein has gone from 8 in April to 5 now (top of normal range), since I've given up brown rice (fructans), rice cakes and millet (high oxalates). So I'm definitely moving in the right direction!!!! I don't having burning in my gut unless I eat certain vegetables:) I can eat white rice without any joint problems at all, so it's not a starch problem. I'm 99.9% sure it's fructose malabsorption. The gluten sensitivity and MC and inability to eat fruit problem and starchy veggies all got triggered at the same time, so I think there was some damage or depletion to the fructose transporter all happening together. I think I made it worse by eating brown rice again for the last year. Oh well. Live and learn.
I will get my latest tryptase back in a week or two. Fortunately my doctor doesn't mind ordering blood tests at all.
Thanks for the info from the Brostoff book. Interesting about buckwheat, in Chinese medicine it's said to be counter-indicated for nerve problems as are eggs. I can't tolerate buckwheat at all and neither can my husband although I used to eat it without a problem in the old days.
I don't know if you've seen any of the work by Dr. Theosaccarides (or something like that, there is a link from the old TMS site) on the selective release of mediators from mast cells. According to his research, mast cells can be triggered to release some mediators but not others. This comes to mind given your sisters high prostaglandin, but normal tryptase and histamine.
Let us know how it goes with the citrus trial. I am on my first week of FODMAPs type diet, just eating chicken, rice, and clarified butter to try to get a symptom free baseline. I had a few screw ups so I'm not there yet. But it's clear that it's the veggies and fruits that are my problem and even small amounts give me clear symptoms. I inadvertently had about a 1/4th tsp. of pear juice and just that amount gave me symptoms including abdominal pain. But that's like mainlining fructose, so what did I expect!
I got my labs back that I had done just two or three days ago and my C-reactive protein has gone from 8 in April to 5 now (top of normal range), since I've given up brown rice (fructans), rice cakes and millet (high oxalates). So I'm definitely moving in the right direction!!!! I don't having burning in my gut unless I eat certain vegetables:) I can eat white rice without any joint problems at all, so it's not a starch problem. I'm 99.9% sure it's fructose malabsorption. The gluten sensitivity and MC and inability to eat fruit problem and starchy veggies all got triggered at the same time, so I think there was some damage or depletion to the fructose transporter all happening together. I think I made it worse by eating brown rice again for the last year. Oh well. Live and learn.
I will get my latest tryptase back in a week or two. Fortunately my doctor doesn't mind ordering blood tests at all.
Faith
LC (in remission)
LC (in remission)
Julie/Faith,
I think the burning mouth sensation sounds like Oral Allergy. I have experienced both neuropathy and OAS and the sensations are different. Neuropathy is more like a buzzing feeling and OAS actualy feels hot and/or itchy. The neuropathy went away with removal of gluten. Last spring I had OAS with things like pears and bananas. I have recently had a few minor sensations in my lips, but nothing major. And I have no clue what my seasonal allergy is.
If I remember correctly, OAS is most likely an eosinophlic problem. I have long suspected I have both eosinophlic and mast cell issues. Doothers think they have both problems as well?
I am a bit frustrated now because D is getting slightly worse again. Could it be seasonal as well? I know I have read that on this forum - maybe something similar to OAS but lower in the GI tract. Just thinking out loud here. My GERD symptoms are well under control since following the MRT restrictions. Today I am going to go back to eating fewer foods to get it back under control. BTW, I noticed no difference on or off citrus, but I am going to continue avoiding for a bit to get under control.
As I mentioned earlier, my sister's prostaglandin D2 was elevated. Elevations are generally associated with asthma. Last year she was told that she had mild asthma. She also has nasal polyps and salycylate sensitivity, which have also beem associated with asthma. I wonder what the relationship with the salicylates and prostaglandin is, if any.
Have a great weekend! I'll be going a urine collection
Mary Beth
I think the burning mouth sensation sounds like Oral Allergy. I have experienced both neuropathy and OAS and the sensations are different. Neuropathy is more like a buzzing feeling and OAS actualy feels hot and/or itchy. The neuropathy went away with removal of gluten. Last spring I had OAS with things like pears and bananas. I have recently had a few minor sensations in my lips, but nothing major. And I have no clue what my seasonal allergy is.
If I remember correctly, OAS is most likely an eosinophlic problem. I have long suspected I have both eosinophlic and mast cell issues. Doothers think they have both problems as well?
I am a bit frustrated now because D is getting slightly worse again. Could it be seasonal as well? I know I have read that on this forum - maybe something similar to OAS but lower in the GI tract. Just thinking out loud here. My GERD symptoms are well under control since following the MRT restrictions. Today I am going to go back to eating fewer foods to get it back under control. BTW, I noticed no difference on or off citrus, but I am going to continue avoiding for a bit to get under control.
As I mentioned earlier, my sister's prostaglandin D2 was elevated. Elevations are generally associated with asthma. Last year she was told that she had mild asthma. She also has nasal polyps and salycylate sensitivity, which have also beem associated with asthma. I wonder what the relationship with the salicylates and prostaglandin is, if any.
Have a great weekend! I'll be going a urine collection
Mary Beth
Mary Beth,
Yes, there does seem to be a seasonal pattern, for some of us. In my case, it's associated with the fall pollen season, (ragweed, primarily). Occasionally, I'll have D for some unexplained reason. Generally, if I take something to keep my hay fever under control, (before the antibodies are released), I'm OK. In the last few years, I've also become sensitive to oak pollen, in the spring, so now, I can sometimes have unexplained D in the spring, if I don't prevent a reaction to the oak pollen. It's nothing like an all-out MC reaction, just a bit of nuisance D, in my case.
Tex
Yes, there does seem to be a seasonal pattern, for some of us. In my case, it's associated with the fall pollen season, (ragweed, primarily). Occasionally, I'll have D for some unexplained reason. Generally, if I take something to keep my hay fever under control, (before the antibodies are released), I'm OK. In the last few years, I've also become sensitive to oak pollen, in the spring, so now, I can sometimes have unexplained D in the spring, if I don't prevent a reaction to the oak pollen. It's nothing like an all-out MC reaction, just a bit of nuisance D, in my case.
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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Hi all,
In Chinese medicine, the autumn is associated with the lung/large intestine meridian/organs so they are more susceptible in this season and they are related to immunity and the skin too. I find the autumn one of the most difficult periods for me personally, with winter coming in second. People with mast cell problems also tend to get triggered by either heat or cold (weather) or both.
I don't think I have eosinophlic and mast cell issues. In the research I've read, when there's eosinophils, mast cells are often, though not always, also in the neighborhood.
I appreciate your frustration, Mary Beth. I think I am still having symptoms from the tiny bit of pear juice I had, getting a little burning with every meal...but it will probably pass in a few days. Today I tried 5 grams (almost nothing) of arugula and had mild burning in my gut and itching and a rash above my knee about 90 minutes later. I think it's high in oxalates. Oh well, At least I'm getting smart enough to only try a tiny, tiny amount. I'm afraid I may be on the chicken, white rice, and clarified butter diet for a long time. I don't want to complain (too much:) because I'm grateful to eat at all! But sure would be nice to get a vegetable or two into my menu. All my abnormal blood values have returned to normal or very close to normal, but now my neurtrophils are low again (the lowest they have been) so I am wanting to get some more vitamins and minerals into this body to help my immune system. I don't think I can eat raw meat like the Artic explorers to get Vit. C!!!!
In Chinese medicine, the autumn is associated with the lung/large intestine meridian/organs so they are more susceptible in this season and they are related to immunity and the skin too. I find the autumn one of the most difficult periods for me personally, with winter coming in second. People with mast cell problems also tend to get triggered by either heat or cold (weather) or both.
I don't think I have eosinophlic and mast cell issues. In the research I've read, when there's eosinophils, mast cells are often, though not always, also in the neighborhood.
I appreciate your frustration, Mary Beth. I think I am still having symptoms from the tiny bit of pear juice I had, getting a little burning with every meal...but it will probably pass in a few days. Today I tried 5 grams (almost nothing) of arugula and had mild burning in my gut and itching and a rash above my knee about 90 minutes later. I think it's high in oxalates. Oh well, At least I'm getting smart enough to only try a tiny, tiny amount. I'm afraid I may be on the chicken, white rice, and clarified butter diet for a long time. I don't want to complain (too much:) because I'm grateful to eat at all! But sure would be nice to get a vegetable or two into my menu. All my abnormal blood values have returned to normal or very close to normal, but now my neurtrophils are low again (the lowest they have been) so I am wanting to get some more vitamins and minerals into this body to help my immune system. I don't think I can eat raw meat like the Artic explorers to get Vit. C!!!!
Faith
LC (in remission)
LC (in remission)
Tex,
Ok - that might explain it. It's not a huge reaction, like you said, but definitely annoying, especially when I had been doing fairly well with that. I am now wondering if the itching I have had the last few weeks is also related to that. I sometimes get itchy eyes from pollen and only rarely get rhinitis. I have noticed that I have more problems in October and May. I haven't paid attention to the pollen count to know what I am allergic to.
Faith,
Have you had trouble finding a supplement to take? Sounds like you might need one since your diet is so limited. My sister has a horrible time with supplements but finally found a children's vitamin she could take . . . can't remember the brand. I'm not a fan of supplements normally, but when you are not yet healed it is a good idea. I take a multi, EPA/DHA, probiotic, extra vitamin D, calcium and magnesium.
I am guessing all leafy greens will have some oxalate. What about zucchini or yellow squash - too much starch?? Life without veggies is rough. I miss lettuce and salads so much. It's no wonder I am sensitive since I ate them almost daily. I am hopeful that I will gain back oral tolerance to many of my old favorites.
Mary Beth
Ok - that might explain it. It's not a huge reaction, like you said, but definitely annoying, especially when I had been doing fairly well with that. I am now wondering if the itching I have had the last few weeks is also related to that. I sometimes get itchy eyes from pollen and only rarely get rhinitis. I have noticed that I have more problems in October and May. I haven't paid attention to the pollen count to know what I am allergic to.
Faith,
Have you had trouble finding a supplement to take? Sounds like you might need one since your diet is so limited. My sister has a horrible time with supplements but finally found a children's vitamin she could take . . . can't remember the brand. I'm not a fan of supplements normally, but when you are not yet healed it is a good idea. I take a multi, EPA/DHA, probiotic, extra vitamin D, calcium and magnesium.
I am guessing all leafy greens will have some oxalate. What about zucchini or yellow squash - too much starch?? Life without veggies is rough. I miss lettuce and salads so much. It's no wonder I am sensitive since I ate them almost daily. I am hopeful that I will gain back oral tolerance to many of my old favorites.
Mary Beth
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faithberry
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Mary Beth,
Thanks for the suggestions. I saw a nutritionist for a year and did a diet for food sensitivity and a nutritional protocol. It didn't help simply because we had the wrong dx; we were focusing on detoxification pathways and foods with the least food chemicals. I took supplements no problem for a year or more (and for the previous five years when I saw a range of other natural doctors). I couldn't take everything, but I did fine on most basic vitamins and amino acids and pancreatin, for example. No herbs or other types of supplements, no fruit or yeast based enzymes, for example. Now my body just reacts to almost any pill I put into it, except it accepts my H1 blocker and gastrocrom. So I have a whole box of vitamins and supplements that I can no longer take, very good quality, hypoallergenic ones!
I will keep trying with small amounts of different vegetables. I need a break for a few days though from the reactions I've had from testing. There are some low oxalate green veggies I will try. I react to zucchini now. I've always been a big vegetable eater. But now I see the veggies have probably just been increasing the inflammation and making the situation worse. I want to find a few I can eat in a tiny quantity and then give my gut a rest for awhile.
I'm tracking myself in fitday and I'm not doing too badly! Today I'm trying to take a little (1/4 th tsp) epsom salts over the day in a big bottle of water, which would give me some magnesium and sulfate.
Thanks for your concern. Faith
Thanks for the suggestions. I saw a nutritionist for a year and did a diet for food sensitivity and a nutritional protocol. It didn't help simply because we had the wrong dx; we were focusing on detoxification pathways and foods with the least food chemicals. I took supplements no problem for a year or more (and for the previous five years when I saw a range of other natural doctors). I couldn't take everything, but I did fine on most basic vitamins and amino acids and pancreatin, for example. No herbs or other types of supplements, no fruit or yeast based enzymes, for example. Now my body just reacts to almost any pill I put into it, except it accepts my H1 blocker and gastrocrom. So I have a whole box of vitamins and supplements that I can no longer take, very good quality, hypoallergenic ones!
I will keep trying with small amounts of different vegetables. I need a break for a few days though from the reactions I've had from testing. There are some low oxalate green veggies I will try. I react to zucchini now. I've always been a big vegetable eater. But now I see the veggies have probably just been increasing the inflammation and making the situation worse. I want to find a few I can eat in a tiny quantity and then give my gut a rest for awhile.
I'm tracking myself in fitday and I'm not doing too badly! Today I'm trying to take a little (1/4 th tsp) epsom salts over the day in a big bottle of water, which would give me some magnesium and sulfate.
Thanks for your concern. Faith
Faith
LC (in remission)
LC (in remission)
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faithberry
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Hi,
It's been a roller coaster ride trying first the no starch diet and then FODMAPs. I think I pushed myself over some limit on the no starch diet by eating too many of the few vegetables I thought I could eat before. Now I can't tolerate even 1/4 cup of veggies it seems!
I reduced my H1 antihistamine to 1x a day and stopped taking my H2 antihistamine. That was probably a mistake, so I'm going to get back on track with them and see if this will help.
My main concern is not getting adequate vitamin c. Tex, did you do anything special for vitamin c or did you think you were getting enough from the small amounts of brocolli and green beans you ate? I haven't tolerated vit c supplements for a long time. I'm not up to eating raw meat. Hope I can get out of this spiral.
It's been a roller coaster ride trying first the no starch diet and then FODMAPs. I think I pushed myself over some limit on the no starch diet by eating too many of the few vegetables I thought I could eat before. Now I can't tolerate even 1/4 cup of veggies it seems!
I reduced my H1 antihistamine to 1x a day and stopped taking my H2 antihistamine. That was probably a mistake, so I'm going to get back on track with them and see if this will help.
My main concern is not getting adequate vitamin c. Tex, did you do anything special for vitamin c or did you think you were getting enough from the small amounts of brocolli and green beans you ate? I haven't tolerated vit c supplements for a long time. I'm not up to eating raw meat. Hope I can get out of this spiral.
Faith
LC (in remission)
LC (in remission)
Hi Faith,
Sorry to see that you're having so many problems getting back on track. For about a year, or more, when I was on the strict diet, I didn't take any vitamins, (except for sublingual B-12 combined with folic acid). Both natural and "synthetic" vitamin C seemed to bother me. After I was in remission, I started taking a multivitamin.
I hope you can find the key, pretty soon.
Tex
Sorry to see that you're having so many problems getting back on track. For about a year, or more, when I was on the strict diet, I didn't take any vitamins, (except for sublingual B-12 combined with folic acid). Both natural and "synthetic" vitamin C seemed to bother me. After I was in remission, I started taking a multivitamin.
I hope you can find the key, pretty soon.
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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Here's news on my latest tryptaste level...
I've been taking Gastrocrom (mast cell stabilizer) for six months.
After 4 months my tryptase level was about the same (just a little higher).
Now, after 6 months it has gone down from 22.5 to 15.5. (=/>13.5 is normal)
That seems a sure sign that the Gastrocrom is working! (Or I'm having a miraculous recovery or the tryptase level fluctuates sometimes).
So if you are just starting on Gastrocrom, it does require patience. Some people see improvement quickly, in a few weeks. But it does take time to see its full effect, at least 2-3 months and there seems to be further improvement down the road.
Of course, I can hardly eat any foods, but I think this is due to fructose malabsorption. Even if I took 19 ampules of Gastrocrom a day, it wouldn't fix the fructose problem. My current working hypothesis is that if I do the diet for fructose malabsorption (a radical version for me) and gradually heal the gut, the mast cells will also calm down and I will eventually be able to go off the medicine.
Increasing my anti-histamines seems to be helping a bit with my latest reaction cycle, but I won't know for sure for a few days.
Tex, thanks for your encouraging words. I think I found the key, but need to apply patience. Not my most shining quality!
I've been taking Gastrocrom (mast cell stabilizer) for six months.
After 4 months my tryptase level was about the same (just a little higher).
Now, after 6 months it has gone down from 22.5 to 15.5. (=/>13.5 is normal)
That seems a sure sign that the Gastrocrom is working! (Or I'm having a miraculous recovery or the tryptase level fluctuates sometimes).
So if you are just starting on Gastrocrom, it does require patience. Some people see improvement quickly, in a few weeks. But it does take time to see its full effect, at least 2-3 months and there seems to be further improvement down the road.
Of course, I can hardly eat any foods, but I think this is due to fructose malabsorption. Even if I took 19 ampules of Gastrocrom a day, it wouldn't fix the fructose problem. My current working hypothesis is that if I do the diet for fructose malabsorption (a radical version for me) and gradually heal the gut, the mast cells will also calm down and I will eventually be able to go off the medicine.
Increasing my anti-histamines seems to be helping a bit with my latest reaction cycle, but I won't know for sure for a few days.
Tex, thanks for your encouraging words. I think I found the key, but need to apply patience. Not my most shining quality!
Faith
LC (in remission)
LC (in remission)
Faith,
Sorry you are struggling again but glad the tryptase is coming down. It sure seems like you have eliminated about everything you can. What are your symptoms after you eat one of the offending fruits or veggies? I had a mini reaction the other day (same old stuff - tachycardia, sweating . . . ) and didn't know what triggered it. I also got an itchy throat and tachy after eating a banana. I am pretty sure these most recent reactions are related to environmental allergies and OAS (although I ALWAYS get more than oral symptoms). I'll be curious to hear if the increase in antihistamines helps. I'm not having much luck tolerating them.
Take care,
Mary Beth
Sorry you are struggling again but glad the tryptase is coming down. It sure seems like you have eliminated about everything you can. What are your symptoms after you eat one of the offending fruits or veggies? I had a mini reaction the other day (same old stuff - tachycardia, sweating . . . ) and didn't know what triggered it. I also got an itchy throat and tachy after eating a banana. I am pretty sure these most recent reactions are related to environmental allergies and OAS (although I ALWAYS get more than oral symptoms). I'll be curious to hear if the increase in antihistamines helps. I'm not having much luck tolerating them.
Take care,
Mary Beth
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faithberry
- Adélie Penguin
- Posts: 246
- Joined: Wed Mar 04, 2009 7:40 am
Mary Beth,
I wonder if it might be a combination of factors for me. I always seem to be the worst in the fall once it turns cold and rainy. Then I've been exposed to some essential oils a few times in the past week; ones people are using for their colds and some other ones. On top of that, I've done various diet experiments, like trying glucose (just 1/4th tsp.), among others, which aggravated my system. So I wonder if it's an accumulation of all these factors.
Now, my body seems to be saying no to chicken. I'm getting rashes around my knees almost every time I eat and itchy and burning in my gut (or in skin, not sure which) and sometimes burning above knees. I have some telangiectasia there, very tiny, and I'm wondering if they could be budding TMEP (Telangiectasia macularis eruptiva perstans), a very rare form of cutaneous masto. I have some on my chest too, but it's hard to ascertain if they are regular telangiectasia or if they might be TMEP which usually has a red/tan background because I'm still tan on my chest (or I'm not and it is TMEP, but I don't know for sure.) Also, I seem to be urinating a lot and getting dried out, have puffy eyes, and the muscle above my upper eyelid is sagging a bit. The rash around the knee has been a popular reaction lately. These are my milder mast cell reactions. I'm also getting indentations on my thighs when I put any pressure on them, but I think this might be due to dehydration. Fructose reactions seem to be more insomnia and joint/muscle pain (among others) and I'm not having any of those reactions at all now that I'm not eating any vegetables.
The rashes and itching are not so bad, but I don't like to keep invoking the immune response and possibly adding to the histamine barrel.
I'm a bit at my wits end as to what to eat. All that's left is white rice and clarified butter. I think I'll stop eating chicken for a day or two or cut back on the amount and eat more rice to see if I can calm my system down. I don't tolerate any protein powders and enteral formulas like Neocate are sourced from corn and contain lots of other weird stuff which are usually a problem for me.
I am going to go back onto my antihistamine protocol from last winter, which was -
2 - Xyzall .5 mg
2 - Zantac 150 mg
plus the 6-8 gastrocrom I take.
I'll see if all this helps.
Sorry you are not tolerating the antihistamines. Have you tried Gastrocrom? People also swear by Ketotifen (mast cell stabilizer and anti-histamine), but I can't take it due to the corn starch. Or something more like Singulair might be helpful for the oral reactions, but I'm not sure. I don't know what meds they use for tacky-type reactions, but I'm sure someone on the TMS groups would know. Things might be more clear when you get the results of your 24 hr. urine test. Unfortunately though, if you were not reacting it might be normal.
Did you have gene testing done by Enterolab? Dr. Lewey says: "Gluten sensitivity is found in all DQ types except DQ4. Other DQ types, particularly DQ1, DQ5, are associated with a risk of gluten related neurological and skin problems. Microscopic colitis, food allergies and oral allergy syndrome reactions are also found in association with other DQ types." So it seems OAS is associated with DQ genes other than DQ 4.
We are planning to go to a warmer climate for the winter, so hopefully that will help but that's 6 weeks away.
If you have any clever thoughts about foods, I would love to hear them. It would be nice if I could rotate, but I don't have enough foods to be able to do that. I know I will get through this, but I don't know how (yet)! It might be best to trust my body and eat white rice for a little while.
Thanks for listening,
Faith
I wonder if it might be a combination of factors for me. I always seem to be the worst in the fall once it turns cold and rainy. Then I've been exposed to some essential oils a few times in the past week; ones people are using for their colds and some other ones. On top of that, I've done various diet experiments, like trying glucose (just 1/4th tsp.), among others, which aggravated my system. So I wonder if it's an accumulation of all these factors.
Now, my body seems to be saying no to chicken. I'm getting rashes around my knees almost every time I eat and itchy and burning in my gut (or in skin, not sure which) and sometimes burning above knees. I have some telangiectasia there, very tiny, and I'm wondering if they could be budding TMEP (Telangiectasia macularis eruptiva perstans), a very rare form of cutaneous masto. I have some on my chest too, but it's hard to ascertain if they are regular telangiectasia or if they might be TMEP which usually has a red/tan background because I'm still tan on my chest (or I'm not and it is TMEP, but I don't know for sure.) Also, I seem to be urinating a lot and getting dried out, have puffy eyes, and the muscle above my upper eyelid is sagging a bit. The rash around the knee has been a popular reaction lately. These are my milder mast cell reactions. I'm also getting indentations on my thighs when I put any pressure on them, but I think this might be due to dehydration. Fructose reactions seem to be more insomnia and joint/muscle pain (among others) and I'm not having any of those reactions at all now that I'm not eating any vegetables.
The rashes and itching are not so bad, but I don't like to keep invoking the immune response and possibly adding to the histamine barrel.
I'm a bit at my wits end as to what to eat. All that's left is white rice and clarified butter. I think I'll stop eating chicken for a day or two or cut back on the amount and eat more rice to see if I can calm my system down. I don't tolerate any protein powders and enteral formulas like Neocate are sourced from corn and contain lots of other weird stuff which are usually a problem for me.
I am going to go back onto my antihistamine protocol from last winter, which was -
2 - Xyzall .5 mg
2 - Zantac 150 mg
plus the 6-8 gastrocrom I take.
I'll see if all this helps.
Sorry you are not tolerating the antihistamines. Have you tried Gastrocrom? People also swear by Ketotifen (mast cell stabilizer and anti-histamine), but I can't take it due to the corn starch. Or something more like Singulair might be helpful for the oral reactions, but I'm not sure. I don't know what meds they use for tacky-type reactions, but I'm sure someone on the TMS groups would know. Things might be more clear when you get the results of your 24 hr. urine test. Unfortunately though, if you were not reacting it might be normal.
Did you have gene testing done by Enterolab? Dr. Lewey says: "Gluten sensitivity is found in all DQ types except DQ4. Other DQ types, particularly DQ1, DQ5, are associated with a risk of gluten related neurological and skin problems. Microscopic colitis, food allergies and oral allergy syndrome reactions are also found in association with other DQ types." So it seems OAS is associated with DQ genes other than DQ 4.
We are planning to go to a warmer climate for the winter, so hopefully that will help but that's 6 weeks away.
If you have any clever thoughts about foods, I would love to hear them. It would be nice if I could rotate, but I don't have enough foods to be able to do that. I know I will get through this, but I don't know how (yet)! It might be best to trust my body and eat white rice for a little while.
Thanks for listening,
Faith
Faith
LC (in remission)
LC (in remission)