I'm confused, frustrated, and overwhelmed. Do I look at this from the Lymphocytic Colitis perspective, or Mast Cell Activation Syndrome perspective?
I just got l.c. in remission after a 6 mos. budesonide taper, avoiding food sensitivities, and currently in phase I eating minimal foods. In another post, Tex responded that he did not believe it sounded like I was having a histamine issue because I didn't have itching. I was concerned because I've been consuming my own fermented foods. I think initial die off did cause some histamine, but I don't think I'm having too many of the histamine foods in order to "trigger" symptoms.
I had a colonoscopy three weeks ago, found angiodysplasia causing my anemia, but no l.c. noted. I took one 3mg budesonide a few days after, that was the last one I've taken. I felt fine for a week, then ct scan. I had to drink the clear liquid contrast and get I.v. contrast too. I felt horrible the following day, and am only starting to get a little better feeling today, two weeks later. Exhausted, little bloated and gassy, stuffy sinuses and pressure, watery eyes, headache, insomnia, etc... B.M.'s are thankfully not D, they are still adjusting to changes, but good.
So, the usual, what causes what. Did I have a mast cell reaction to the contrast, being off budesonide inflammation, a reaction
from anesthesia the week prior, etc.?
I took zyrtec a couple days last week, and didn't get any relief. I took a prescription levocetirizine 5mg yesterday and today, and I'm feeling some relief, plus I actually slept last night. I now know too that lack of sleep can be a mast cell trigger. If I don't get enough sleep sometimes my eyes look swollen. Even if I get a lot, I still feel like I haven't slept.
When I look all the way back, I've had continuous triggers, the worst being quitting smoking and antibiotics in 2002. I had daily D by 2013 until l.c. diagnosis and budesonide in 2019, which it has taken four times of budesonide and avoidance of known triggers, to get in remission.
I'm 49, haven't worked in years, recently divorced, and I need to be able to think so I can get back to work. I don't know if I'm good with just food and periodic antihistamines and just heal, or if I have mcas and I need a mast cell stabilizer plus who knows what? I know we're all different. It's frustrating not having a doctor that understands mast cell or lymphocytic colitis.
I have a doctor appointment on Friday with my primary (I've only seen her 2x, new one), to go over sending a referral to a mcas specialist (u of m). I think I've got more than enough history to get in the door, I hope. The lab that viewed my slides doesn't tryptase stain, but said i can send them out myself, is there an independent lab somewhere?
I hope that if I can get in to a "specialist", it will help me understand what, if anything, I need to take and when? Antihistamine, dao, hnmt, mast cell stabilizer...I'm confused. With having to be gf, df, sf, ef, and corn free, it feels worse.
I'm currently taking the multi vitamin with iron infant liquid drops, so I can get the iron (molasses has too much sugar), topical magnesium, vit d, levocetirizine rarely if needed, and a quarter of 25mg hydroxyzine at bedtime. I hope the last two aren't too much corn to trigger something, especially if i have to take the levocetirizine every day. The compounding pharmacy here is expensive! I was thinking of going back on the ldn as well, and that's pricey here too. Again, I don't want to start that up if I end up needing other things but part of me wants to try it again, now that I'm off of the ten other medications and 50 supplements I was on, maybe I could actually notice a benefit. So again, a knowledgeable doctor would be nice, ugh.
If anyone has made it to the end of this, and you have any insight, I'd love to hear it please!
Thanks much :)
Mcas issue or lc issue?
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Re: Mcas issue or lc issue?
Hello Ren,
Here are my thoughts:
I've been in remission for over15 years, and my histamine issues are slightly more troublesome each year. I have to conclude that MC continues to deplete DAO (at least for some of us), even when the disease is in remission. I understand how some people feel that fermented foods are healthy, because of what they read, but as far as I can determine, fermented foods provide no significant benefits, especially for most MC patients — they're more likely to be a liability. So why take a chance?
Your reaction to the contrast medium sounds like it might have been an intestinally-mediated (non-anaphylactic) allergic reaction. Please be aware that allergic reactions to contrast medium is associated with anaphylactic reactions to MRA-based COVID-19 vaccines. If you get a COVID-19 vaccination, be sure that the person giving the vaccination is aware of the issue and prepared to administer an antidote (epinephrine) in case you react to the vaccine.
But since everything affects everything else, it's difficult to say positively what caused what. We can only guess. If it were me, I would pass on the fermented foods for a few days, or better yet, a week, to see if it makes a difference.
Regarding the possibility of a mast cell issue: Virtually all of the mast cell experts who understand how mast cell issues tie in with MC, have been trained by Dr Maria Castells, at Brigham and Women's Hospital in Boston. They're mosty widely scattered in the eastern quarter of the country. Most of them are capable of coordinating/connecting mast cell issues with MC. The rest of the mast cell experts are mostly allergists who don't understand MC, and they mostly understand mastocitosis from a systemic view. It's unlikely that you would be able to get a valid diagnosis from one of them (in my opinion).
And remember — the more medications/supplements we take, the more likely that one or more of them may interact and/or cause an MC flare.
But the bottom line here is that we have to listen to our bodies, and act accordingly. And in uncharted waters such as these, we can only guess at what's causing what, based on other MC patient's experiences.
Tex
Here are my thoughts:
I've been in remission for over15 years, and my histamine issues are slightly more troublesome each year. I have to conclude that MC continues to deplete DAO (at least for some of us), even when the disease is in remission. I understand how some people feel that fermented foods are healthy, because of what they read, but as far as I can determine, fermented foods provide no significant benefits, especially for most MC patients — they're more likely to be a liability. So why take a chance?
Your reaction to the contrast medium sounds like it might have been an intestinally-mediated (non-anaphylactic) allergic reaction. Please be aware that allergic reactions to contrast medium is associated with anaphylactic reactions to MRA-based COVID-19 vaccines. If you get a COVID-19 vaccination, be sure that the person giving the vaccination is aware of the issue and prepared to administer an antidote (epinephrine) in case you react to the vaccine.
But since everything affects everything else, it's difficult to say positively what caused what. We can only guess. If it were me, I would pass on the fermented foods for a few days, or better yet, a week, to see if it makes a difference.
Regarding the possibility of a mast cell issue: Virtually all of the mast cell experts who understand how mast cell issues tie in with MC, have been trained by Dr Maria Castells, at Brigham and Women's Hospital in Boston. They're mosty widely scattered in the eastern quarter of the country. Most of them are capable of coordinating/connecting mast cell issues with MC. The rest of the mast cell experts are mostly allergists who don't understand MC, and they mostly understand mastocitosis from a systemic view. It's unlikely that you would be able to get a valid diagnosis from one of them (in my opinion).
And remember — the more medications/supplements we take, the more likely that one or more of them may interact and/or cause an MC flare.
But the bottom line here is that we have to listen to our bodies, and act accordingly. And in uncharted waters such as these, we can only guess at what's causing what, based on other MC patient's experiences.
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.
Re: Mcas issue or lc issue?
Thanks Tex! I feel less overwhelmed :)
*Is there any type of blood test re. DAO, hnmt, etc., that I can ask my primary doc. For tomorrow? I haven't had liver issues, I don't have the dao mutation, but have a good portion of the other methylation gene mutations though.
*If dao is an issue with us, how do I know I need to supplement and is now too soon to start taking a supplement? Maybe the desiccated liver or kidney? I was hoping to get a benefit from fermented foods and take dao, quercetin, antihistamine,...
*is there a benefit to me taking levocetirizine every day since it's still recent in my stopping budesonide, or only when I have allergy symptoms?
*Do you think trying ldn again may be too soon? It might help. I couldn't tell before, too many drugs.
*This may be too many things right now, but I don't want to be three months down the road and realize that I should have started something sooner? If I shouldn't do these now, when should I?
Thank you for the thoughts on ferments, contrast and vaccine-whoa, and the specialist.
*Is there any type of blood test re. DAO, hnmt, etc., that I can ask my primary doc. For tomorrow? I haven't had liver issues, I don't have the dao mutation, but have a good portion of the other methylation gene mutations though.
*If dao is an issue with us, how do I know I need to supplement and is now too soon to start taking a supplement? Maybe the desiccated liver or kidney? I was hoping to get a benefit from fermented foods and take dao, quercetin, antihistamine,...
*is there a benefit to me taking levocetirizine every day since it's still recent in my stopping budesonide, or only when I have allergy symptoms?
*Do you think trying ldn again may be too soon? It might help. I couldn't tell before, too many drugs.
*This may be too many things right now, but I don't want to be three months down the road and realize that I should have started something sooner? If I shouldn't do these now, when should I?
Thank you for the thoughts on ferments, contrast and vaccine-whoa, and the specialist.
Re: Mcas issue or lc issue?
I'm going to ask her to do the tryptase, since the specialist requires it, and that would be serum. I'm going to try to get in with him. I may or may not, and if I do, it may or may not be beneficial. I want to try while I still have insurance.
There is also a prostaglandin d3 and histamine, both plasma. Chromogranin-A, serum. Three others that are urine, and I believe i read those are super sensitive anyhow.
There is also a prostaglandin d3 and histamine, both plasma. Chromogranin-A, serum. Three others that are urine, and I believe i read those are super sensitive anyhow.
Re: Mcas issue or lc issue?
What an arduous doctor appointment. I'm probably going to have to try to find a functional doctor here, my doctor is overwhelmed with this and says "aren't the gastro people helping you with this?". Oh my, lol. She did agree to a tryptase test and referral to the specialist, to check my copper, folate, b6 (haven't been checked in a year, had to pull teeth to get these), fill out insurance paperwork for pharmacy compounding approval, and to write a script for ldn. She's a knowledgeable doctor, I don't know why running the bloodwork is that big of a deal, I gave credible justification for why I was asking her to. She said, "the fact that you're asking me to, is out of my element...these aren't things I'd check...". I said, if these vitamins/minerals are out of balance, as they have been, and they affect my thyroid, methylation, gut, don't you think I might need to supplement them temporarily?". She said yes. Then I said, "if the g.i. people aren't treating me , and you aren't treating me, who is?". Ugh :( I'm grateful for what I can get.
Re: Mcas issue or lc issue?
Hi Ren,
Sorry, I've been offline. We had a bad ice storm, which caused a power outage. And the power might go down again, because the bad weather is predicted to last at least three more days.
Remember, if you introduce more than one medication or supplement at the same time, and you have an adverse reaction, you won't be able to tell which one caused the problem.
Tex
Sorry, I've been offline. We had a bad ice storm, which caused a power outage. And the power might go down again, because the bad weather is predicted to last at least three more days.
Remember, if you introduce more than one medication or supplement at the same time, and you have an adverse reaction, you won't be able to tell which one caused the problem.
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.
Re: Mcas issue or lc issue?
Thanks Tex. I remember the ice storms when I lived in Texas. Stay safe :)
Re: Mcas issue or lc issue?
Hi Ren,
Contrast dye and anesthesia would both cause me to be sick. The stress of a colonoscopy would cause me to be sick.
If you are off of budesonide and getting solid stool
--keep your foods simple for at least 6 months.
--stick to minimum supplements for awhile
--less is more once we are off of budesonide
If the baby vitamin drops with iron don't work for your anemia I"ve had good results with Proferrin. It is heme iron (centrifuged cows blood). It is expensive--about $70 for 60 capsules. It has been the only iron supplement that does not act as a laxative.
I think we all have a bit of increased mast cell activity once we are off of budesonide. I believe steroids suppress mast cell activity which is why when we get off of budesonide we have some mast cell activity. I felt it with
the increase in runny nose. I paid attention to not refrigerating meats/protein very long. As time passed
the mast cell activity diminished.
Minimize supplements for awhile and keep your foods simple to minimize your risk of relapse.
Contrast dye and anesthesia would both cause me to be sick. The stress of a colonoscopy would cause me to be sick.
If you are off of budesonide and getting solid stool
--keep your foods simple for at least 6 months.
--stick to minimum supplements for awhile
--less is more once we are off of budesonide
If the baby vitamin drops with iron don't work for your anemia I"ve had good results with Proferrin. It is heme iron (centrifuged cows blood). It is expensive--about $70 for 60 capsules. It has been the only iron supplement that does not act as a laxative.
I think we all have a bit of increased mast cell activity once we are off of budesonide. I believe steroids suppress mast cell activity which is why when we get off of budesonide we have some mast cell activity. I felt it with
the increase in runny nose. I paid attention to not refrigerating meats/protein very long. As time passed
the mast cell activity diminished.
Minimize supplements for awhile and keep your foods simple to minimize your risk of relapse.
Re: Mcas issue or lc issue?
Thanks so much for your response Brandy, so very helpful!
I can't believe I didn't question the contrast initially, I'm not fully questioning everything and anything that is going in and on my body, yet. There's so much to learn, I'm grateful for this forum. I need to totally re-read Tex's book as well.
Thanks for mentioning Proferrin. Which type do you get, how many do you take, where do you get it from? I asked my doctor and she had not heard of it, but said to send her the info. I pulled it up online and the ones I see look like there's corn in it though? I was taking 325mg of ferrous sulfate in one pill, so I'm sure the cost comes in from the amount that needs to be taken. The liquid drops I'm taking are tolerable, but they have stained my teeth badly! I have deep striations in my teeth and the staining seems permanent from the first time I used it, ugh. I'm going to the dentist next Monday, and I surely hope they can get the stain out...feeling a little worried.
Thanks again,
Ren
I can't believe I didn't question the contrast initially, I'm not fully questioning everything and anything that is going in and on my body, yet. There's so much to learn, I'm grateful for this forum. I need to totally re-read Tex's book as well.
Thanks for mentioning Proferrin. Which type do you get, how many do you take, where do you get it from? I asked my doctor and she had not heard of it, but said to send her the info. I pulled it up online and the ones I see look like there's corn in it though? I was taking 325mg of ferrous sulfate in one pill, so I'm sure the cost comes in from the amount that needs to be taken. The liquid drops I'm taking are tolerable, but they have stained my teeth badly! I have deep striations in my teeth and the staining seems permanent from the first time I used it, ugh. I'm going to the dentist next Monday, and I surely hope they can get the stain out...feeling a little worried.
Thanks again,
Ren
Re: Mcas issue or lc issue?
I found several posts on the iron/Proferrin supplement topic, sorry I didn't look first before my prior post! I'll have to look into the Proferrin more closely for the corn issue. I did find a corn free iron supplement that might work. The reviews were really good. If anyone reading this has input, or is familiar with this, please let me know. Thanks :)
Nature's Plus Brand
90 tablets $14.50
Corn Free , Dairy Free , Egg Free , Fish Free , Gluten Free , Milk Free , Peanut Free , Salt Free , Shellfish Free , Soy Free , Starch Free , Tree Nut Free , Wheat Free , Yeast Free
As a dietary supplement, one tablet daily. May be chewed or allowed to dissolve slowly in the mouth.
Amount Per Serving % Daily Value
Sugar 1g
Vitamin C - (As Ascorbic Acid) 100 Mg 167%
Iron - (As Amino Acid Chelate) 27 Mg 150%
Other Ingredients:
Fructose, rose hips (Rosa canina fruit), beet (Beta vulgaris root), raspberry (Rubus idaeus leaf), stearic acid and silica.
Nature's Plus Brand
90 tablets $14.50
Corn Free , Dairy Free , Egg Free , Fish Free , Gluten Free , Milk Free , Peanut Free , Salt Free , Shellfish Free , Soy Free , Starch Free , Tree Nut Free , Wheat Free , Yeast Free
As a dietary supplement, one tablet daily. May be chewed or allowed to dissolve slowly in the mouth.
Amount Per Serving % Daily Value
Sugar 1g
Vitamin C - (As Ascorbic Acid) 100 Mg 167%
Iron - (As Amino Acid Chelate) 27 Mg 150%
Other Ingredients:
Fructose, rose hips (Rosa canina fruit), beet (Beta vulgaris root), raspberry (Rubus idaeus leaf), stearic acid and silica.
Re: Mcas issue or lc issue?
I ordered the Proferrin clear on Amazon. I called the manufacturer to find out where the magnesium stearate is sourced from, waiting for a call back.
Even the Enfamil liquid has corn derivatives. Of course they claim there's no protein so it's okay :( I ended up using baking soda and peroxide together to get more stains out of my teeth, but they are still stained.
I need the iron badly, so it is what it is, I'm tired of trying to find corn free supplements. I actually get tired because It's a never ending process with no fruition. Corn, ugh. I rarely ate corn, seven years without it and then maybe tortilla chips if we went out to eat in a year's time. Proves it's in supplements, those I took 50 of a day! Same with the darn soy too.
Even the Enfamil liquid has corn derivatives. Of course they claim there's no protein so it's okay :( I ended up using baking soda and peroxide together to get more stains out of my teeth, but they are still stained.
I need the iron badly, so it is what it is, I'm tired of trying to find corn free supplements. I actually get tired because It's a never ending process with no fruition. Corn, ugh. I rarely ate corn, seven years without it and then maybe tortilla chips if we went out to eat in a year's time. Proves it's in supplements, those I took 50 of a day! Same with the darn soy too.
Re: Mcas issue or lc issue?
I am currently taking the proferrin clear from Amazon. This is the mfgers site but I ordered from Amazon.
https://proferrin.com/shop-2/?gclid=EAI ... gJUpfD_BwE
I take it with food.
I don't take it at breakfast because I have tea which blocks iron absorption.
This stuff really works.
https://proferrin.com/shop-2/?gclid=EAI ... gJUpfD_BwE
I take it with food.
I don't take it at breakfast because I have tea which blocks iron absorption.
This stuff really works.
Re: Mcas issue or lc issue?
Rea,
My iron situation is low ferritin. Twice I've had scores of 10 or 12 for ferritin and the fatigue is mind numbing.
It takes about 6-8 weeks on the Proferrin for me to start getting my energy back.
Virtually all the other irons that I've tried worked as laxatives.
I've never tried the dessicated liver pills.
My iron situation is low ferritin. Twice I've had scores of 10 or 12 for ferritin and the fatigue is mind numbing.
It takes about 6-8 weeks on the Proferrin for me to start getting my energy back.
Virtually all the other irons that I've tried worked as laxatives.
I've never tried the dessicated liver pills.
Re: Mcas issue or lc issue?
Brandy-
Thanks for the details! Are you taking one pill a day? I see where some people take up to three a day. Do you have a corn sensitivity? I'm a plus 2 on corn. I haven't gotten a call back from the manufacturer yet re. ingredient.
Ohhhh I can relate to the fatigue, it is mind numbing horrible. Last October my ferritin was <8. I got it up to 17 in December. Dizziness and shortness of breath too kicked in heavy initially.
My iron was 17, up to 60 in December; and hemoglobin was 8.8, up to 11.9 in December.
It looks like the Proferrin is the best choice for absorption and efficacy, with the least side effects. I tend to go more constipated from the iron, I think this one is good regardless because of the good initial absorption.
Thanks again for taking your time to tell me about it, I'm so grateful :)
Thanks for the details! Are you taking one pill a day? I see where some people take up to three a day. Do you have a corn sensitivity? I'm a plus 2 on corn. I haven't gotten a call back from the manufacturer yet re. ingredient.
Ohhhh I can relate to the fatigue, it is mind numbing horrible. Last October my ferritin was <8. I got it up to 17 in December. Dizziness and shortness of breath too kicked in heavy initially.
My iron was 17, up to 60 in December; and hemoglobin was 8.8, up to 11.9 in December.
It looks like the Proferrin is the best choice for absorption and efficacy, with the least side effects. I tend to go more constipated from the iron, I think this one is good regardless because of the good initial absorption.
Thanks again for taking your time to tell me about it, I'm so grateful :)