Hi all.
So, my remission has been slowly deteriorating and I'm trying to get back to where i was. I know that I should just go back to what I was eating at the beginning, but frankly, I don't want to go back THAT far. it really does effect my quality of life.
My question is : Is it possible that I have been eating something the whole time that I am intolerant to, or is it more likely that I am having problems because of something I have added back in since ( but isn't a protein or any of the main no nos)? I am thinking of challenging eggs, but I have eaten them the whole time (throughout my healing). Same goes for corn products.
No real added stress lately. ... more "allergy "symptoms though. The H2 antihistamines made no difference and I am still taking an H1 each day.
Anyone?
Thanks
leah
A slide backwards :(
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Hi Leah,
That's a tough question. And I have a hunch that the fact that you have selective IgA deficiency adds to the complexity, because it adds another level of unknowns.
IMO, one of the best ways to flush out a hidden food sensitivity is to totally avoid a suspected food for about 5 or 6 days (the half-life of most antibodies other than gluten is about 6 days), and then challenge it. Typically, sensitivity (and therefore reaction potential) should be at about a maximum at that point. To do the same challenge with gluten, of course, one would need to avoid gluten for 3 or 4 months, before doing the challenge.
Your deterioration could be due to a build up of mast cell degranulation issues, especially since it seems to be associated with common allergies. Have you tried avoiding foods that are high in histamines, and foods that trigger the degranulation of mast cells? You could be low on diamine oxidase (DAO), and so your body isn't able to clear excess (left over) histamines, leading to a buildup. Histame is a replacement, if DAO is low. This DAO issue is discussed on pages 168-169 in the book, and other related issues that complicate recovery are discussed in the rest of chapter 14, if you happen to have a copy handy.
Tex
That's a tough question. And I have a hunch that the fact that you have selective IgA deficiency adds to the complexity, because it adds another level of unknowns.
IMO, one of the best ways to flush out a hidden food sensitivity is to totally avoid a suspected food for about 5 or 6 days (the half-life of most antibodies other than gluten is about 6 days), and then challenge it. Typically, sensitivity (and therefore reaction potential) should be at about a maximum at that point. To do the same challenge with gluten, of course, one would need to avoid gluten for 3 or 4 months, before doing the challenge.
Your deterioration could be due to a build up of mast cell degranulation issues, especially since it seems to be associated with common allergies. Have you tried avoiding foods that are high in histamines, and foods that trigger the degranulation of mast cells? You could be low on diamine oxidase (DAO), and so your body isn't able to clear excess (left over) histamines, leading to a buildup. Histame is a replacement, if DAO is low. This DAO issue is discussed on pages 168-169 in the book, and other related issues that complicate recovery are discussed in the rest of chapter 14, if you happen to have a copy handy.
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.
Hi Leah, I just my lastest hair test results and one of the items was my Sodium/Potassium [Na/K] ratio. They stated that " An imbalance in this ratio represents a possible imbalance in adrenal hormone production. If this pattern remains chronic, it may give rise to the following associated conditions fatigue, depression and allergies. I will be retesed in appox three months after following the diet recommendations and trace minerals that I take at every meal. I hope you feel better today. Jon
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Re: A slide backwards :(
Leah,Leah wrote:Hi all.
So, my remission has been slowly deteriorating and I'm trying to get back to where i was. I know that I should just go back to what I was eating at the beginning, but frankly, I don't want to go back THAT far. it really does effect my quality of life.
Even if you have to go back to where you started to get this under control, no doubt it will not be for nearly as long as it was the first time. Maybe it won't feel so daunting if you think of it as just a short term measure rather than many months.
Jean
Tex, funny you should mention DAO because i was just telling someone else about it. My cousin's wife just told me she has had an undiagnosed intestinal issue ( D) that has been going on for 10 years! One of the doctors said he saw lots of Mast cells. And he mentioned neutrophils , but nobody has given her good advice on what to do about it. One even put her on fiber pills!I might have to give Histame a try. it makes a lot of sense since it has been kind of a slow deterioration.
I am going to challenge eggs for the next 7 days. Wish me luck because I certainly don't want to give up eggs :)
Jean, I've been meaning to tell you that I loved your analogy about the diet being like a cast. I think I might be using it some time down the road! And if I have to go all the way back to the beginning, I will, but i am not so bad that I feel the need yet, but thank you :)
My Adrenals were actually tested when I saw my immunologist and it looked good. I have really never suffered from fatigue, so that didn't surprise me, but thank you for the info. and I hope you balance out soon.
Leah
I am going to challenge eggs for the next 7 days. Wish me luck because I certainly don't want to give up eggs :)
Jean, I've been meaning to tell you that I loved your analogy about the diet being like a cast. I think I might be using it some time down the road! And if I have to go all the way back to the beginning, I will, but i am not so bad that I feel the need yet, but thank you :)
My Adrenals were actually tested when I saw my immunologist and it looked good. I have really never suffered from fatigue, so that didn't surprise me, but thank you for the info. and I hope you balance out soon.
Leah
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Sheila
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I'm so sorry you seem to be sliding backwards. That seems to be the pattern with MC, 3 steps forward and 2 steps back.
I removed something I suspected was causing a lot of gas about 10 days ago. The gas problem almost immediately resolved but has gradually gotten worse again. I didn't add anything new!! I don't want to go backwards either but I'll be very conservative for the rest of the week. Boring but safe.
Your issues are more complex than mine, for sure. You are very good at finding what works for you and between you and Tex I hope you figure it out.
Sheila W
I removed something I suspected was causing a lot of gas about 10 days ago. The gas problem almost immediately resolved but has gradually gotten worse again. I didn't add anything new!! I don't want to go backwards either but I'll be very conservative for the rest of the week. Boring but safe.
Your issues are more complex than mine, for sure. You are very good at finding what works for you and between you and Tex I hope you figure it out.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
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wmonique2
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a slide backwards
Hi Leah,
Sorry about that. It seems to be the pattern with MC. You do everything right then bam! it slams you.
I've had 3 weeks, nearly 4 of no nausea and no issues. I have been following the low histamine diet. Jean posted on a recent post of mine (Histamine issues--here's your perfect list) an amazing PDF with 6 pages of all the foods. It's the best list I've seen and I printed it and keep it in my purse. The categories are clearly defined and the degree of intolerance is too. Take a look at it. The list I posted has a list of the DAO blockers and histamine releasers.
I am medicated too (elavil and mesalamine). the anti-histamine pill worked for a short while for me and then it stopped working and I started having symptoms again so I went back to elavil. Following the low histamine diet has really helped.
I hope you feel better soon. Tell us how you solve it.
Monique
Sorry about that. It seems to be the pattern with MC. You do everything right then bam! it slams you.
I've had 3 weeks, nearly 4 of no nausea and no issues. I have been following the low histamine diet. Jean posted on a recent post of mine (Histamine issues--here's your perfect list) an amazing PDF with 6 pages of all the foods. It's the best list I've seen and I printed it and keep it in my purse. The categories are clearly defined and the degree of intolerance is too. Take a look at it. The list I posted has a list of the DAO blockers and histamine releasers.
I am medicated too (elavil and mesalamine). the anti-histamine pill worked for a short while for me and then it stopped working and I started having symptoms again so I went back to elavil. Following the low histamine diet has really helped.
I hope you feel better soon. Tell us how you solve it.
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Leah and all,
since we are touching on mast cell issues, I have a question: can mast cell degranulation be caused by exercise?
I felt I had a reaction the day after I moved 52 landscaping blocks from the back of our pickup to our patio, probably 20 feet away. Moving them 4-5 deep on the hand truck really didn't seem like any big deal. Some I had to throw from the center of the truck bed to the yard because I couldn't reach them over the side of the bed. I did this between 4:00 and 5:00 in the afternoon.
I did this because I didn't want my husband to mess with them so soon after his ablation. The next morning I had symptoms just as if I had eaten dairy or something. Yet I had not done anything different diet-wise.
so, does mast cell degranulation occur with exercise?
since we are touching on mast cell issues, I have a question: can mast cell degranulation be caused by exercise?
I felt I had a reaction the day after I moved 52 landscaping blocks from the back of our pickup to our patio, probably 20 feet away. Moving them 4-5 deep on the hand truck really didn't seem like any big deal. Some I had to throw from the center of the truck bed to the yard because I couldn't reach them over the side of the bed. I did this between 4:00 and 5:00 in the afternoon.
I did this because I didn't want my husband to mess with them so soon after his ablation. The next morning I had symptoms just as if I had eaten dairy or something. Yet I had not done anything different diet-wise.
so, does mast cell degranulation occur with exercise?
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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wmonique2
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a slide backwards
Carol,
I want to say Yes. Because I was getting serious nausea after an hour of belly dancing. Always.
Monique
I want to say Yes. Because I was getting serious nausea after an hour of belly dancing. Always.
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Monique,
I vaguely remember hearing that somewhere but wanted confirmation. I've had other times I've been active but had no reaction. Maybe it's a matter of degree OR if we've gained some stamina back. ??
I vaguely remember hearing that somewhere but wanted confirmation. I've had other times I've been active but had no reaction. Maybe it's a matter of degree OR if we've gained some stamina back. ??
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
I just started exercising again -- it does get things moving, although I glutened myself too, so I know the real culprit of my current bout of D. Lucky for me, the reaction is swift, severe and short-lived.
Leah, I hope you're not on your way to a new food sensitivity. I often wonder about eggs too, but I won't give them up without a more obvious reaction. I too have gotten too lax with summer produce, tomatoes, greens, fruits, etc. After my week of accidental glutening, I need a serious reset diet!
Leah, I hope you're not on your way to a new food sensitivity. I often wonder about eggs too, but I won't give them up without a more obvious reaction. I too have gotten too lax with summer produce, tomatoes, greens, fruits, etc. After my week of accidental glutening, I need a serious reset diet!
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
If exercise is a culprit, then I am doomed ( being a fitness trainer) ! i think Jon is right about the amount of stress put on the body. i am pretty use to the amount of exercise i usually get, but if I over due it... maybe. I will have to keep an eye on that one. I ordered a DAO supplement to see if that helps. I will also watch the histamine foods. The only ones I indulge in though are avocado, dark chocolate, and egg whites. I think my main problem is leftovers. sigh
i will keep you posted
@Jean will you post the histamine list again for me? i remember seeing it and I should have printed it then. thanks
leah
i will keep you posted
@Jean will you post the histamine list again for me? i remember seeing it and I should have printed it then. thanks
leah