Hi...
I was diagnosed with LC in May of 2017 but didn't really start having serious symptoms until September and changed my diet in November 2017. By mid December I was feeling significantly better and did pretty well until February. Since February it has just been a constant struggle. I started getting terrible reflux (burning at the base of the throat), so I quit taking all my supplements, thinking that perhaps one of them was causing the problem. I had been taking Kirkman mag bisglycinate Chelate, D3, Calcium, and Thorne Methyl-guard Plus. After a couple of weeks without the supps (just topical mag) the reflux had not improved. In addition, my BMs seem to be getting progressively worse. They haven't been "normal" in a year, but I least I had been at a stable, soft but formed stage. My next thought was that maybe all the coconut products (oil, milk, yogurt, and shredded) might be giving me issues. So I cut the coconut out too. That also did not seem to make a difference. Still struggling with reflux and D. This afternoon I read somewhere that magnesium deficiency can be related to reflux so I decided to restart all my supps. Now tonight I am all the way back to liquid D. :(
I am gluten, dairy, and soy free, but have added grains (mostly rice) and other foods back into my diet. No processed sugars or snack foods, though. I don't really know what to do at this point. Go back to the intro diet? Immodium? Pepto?
I had taken 6 weeks of budesonide last summer, (prior to changing my diet) but it didn't seem to do much of anything for me.
The only testing I've had done by my doc is the colonoscopy which diagnosed me...and some previous stool testing to check for parasites, infection, etc. I had the Enterolab testing done, so that is what I base my diet on.
Is there other testing I should press my doctor for? Testing for vitamin/mineral deficiencies, maybe? What else? I'm just not sure what to do at this point. I feel like I'm all the way back to square one. The only good thing is that the nausea and stomach pains haven't returned (yet!). ......what a roller coaster!
Struggling...symptoms just get worse :(
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Struggling...symptoms just get worse :(
~Louise
Lymphocytic Colitis diagnosed May 2017
"Laughter is an instant vacation." Milton Berle
Lymphocytic Colitis diagnosed May 2017
"Laughter is an instant vacation." Milton Berle
Hi Louise,
Sorry to hear that you're reacting again. It sounds as though your vitamin D and magnesium levels should be fine. Is there any possibility that your diet could somehow be getting cross-contaminated? And I wonder if you may have become sensitive to a food that you previously tolerated just fine. That happened to me a few years ago when I became sensitive to soy after previously testing negative to it. I see that you are already avoiding soy, though, so there aren't very many remaining possibilities.
It sounds as though you might have developed eosinophilic esophagitis (EoE), but if that's the case, you should be having difficulty swallowing. EoE is an inflammation of the lining of the esophagus usually caused by an allergic reaction to a food or drug, acid reflux, or an airbourne antigen. Roughly half of EoE patients have either a pollen allergy or asthma issues. EoE involves the infiltration of eosinophils into the lining of the esophagus similar to the infiltration of lymphocytes into the lining of the colon that's associated with LC. IMO, if this is the case, your diarrhea might be due to a histamine buildup issue. But I note that you are already avoiding most high-histamine sources.
Could this be the case, or am I
.
Tex
Sorry to hear that you're reacting again. It sounds as though your vitamin D and magnesium levels should be fine. Is there any possibility that your diet could somehow be getting cross-contaminated? And I wonder if you may have become sensitive to a food that you previously tolerated just fine. That happened to me a few years ago when I became sensitive to soy after previously testing negative to it. I see that you are already avoiding soy, though, so there aren't very many remaining possibilities.
It sounds as though you might have developed eosinophilic esophagitis (EoE), but if that's the case, you should be having difficulty swallowing. EoE is an inflammation of the lining of the esophagus usually caused by an allergic reaction to a food or drug, acid reflux, or an airbourne antigen. Roughly half of EoE patients have either a pollen allergy or asthma issues. EoE involves the infiltration of eosinophils into the lining of the esophagus similar to the infiltration of lymphocytes into the lining of the colon that's associated with LC. IMO, if this is the case, your diarrhea might be due to a histamine buildup issue. But I note that you are already avoiding most high-histamine sources.
Could this be the case, or am I
.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 Louise,
Sorry to hear about your current downturn. I reacted to the same foods that you listed, eggs and others. About 6 months after I began the elimination diet based on Enterolab results, I began eating LOTS of coconut. I found that it helped with all digestive symptoms, especially the watery D. Then I tried coconut yogurt, thinking it would be even more of a treat—BUT reacted immediately—and the flare took some time to subside. I’m guessing it was the probiotic cultures. Over the years probiotics have never helped and often made things worse for me. I seem to have developed significant histamine issues, and citrus, vinegar, wine, any fermented foods and chocolate (unfortunately) seem to be the most problematic. But I continue to eat HUGE amounts of all forms of coconut without any problems.
As far as the burning throat—LPR—laryngopharyngeal reflux—is generally worse at night, but can occur at any time. In the past I’ve (reluctantly) taken PPI’s intermittently, but am now finding Ranitidine (Zantac) is effective. I use the low dosage (75 mg twice a day) in conjunction with other antihistamines.
Because of esophageal dysmotility, GERD, LPR, etc. I had extensive esophageal testing done in 2015—but was negative for EE. Official diagnosis was ineffective swallowing w/hypersensitive esophagus, however I’ve never been aware of any functional swallowing difficulties. Recommended treatment was a PPI. My guess is that when they re-examine those (2015) biopsy slides using the proper stains, they’ll find an elevated # of mast cells, as was the case with my 2016 colonoscopy slides. My gastroenterologist has agreed to request further evaluation of mast cell issues by the pathologist.
If you have an upper endoscopy be sure to request a mast cell count, as well as EE, and whatever else they look for. If you suspect histamine issues you can request that your colonoscopy slides be reexamined for a mast cell count.
I stopped taking all supplements besides magnesium and Vitamin D, MethylGuard+ and P5P almost a year ago, and just began adding some others back fairly recently. When you’re in a flare seems like anything can wreak havoc. You might want to cut back to just a few “safe” foods until the turbulence subsides.
Teri
Sorry to hear about your current downturn. I reacted to the same foods that you listed, eggs and others. About 6 months after I began the elimination diet based on Enterolab results, I began eating LOTS of coconut. I found that it helped with all digestive symptoms, especially the watery D. Then I tried coconut yogurt, thinking it would be even more of a treat—BUT reacted immediately—and the flare took some time to subside. I’m guessing it was the probiotic cultures. Over the years probiotics have never helped and often made things worse for me. I seem to have developed significant histamine issues, and citrus, vinegar, wine, any fermented foods and chocolate (unfortunately) seem to be the most problematic. But I continue to eat HUGE amounts of all forms of coconut without any problems.
As far as the burning throat—LPR—laryngopharyngeal reflux—is generally worse at night, but can occur at any time. In the past I’ve (reluctantly) taken PPI’s intermittently, but am now finding Ranitidine (Zantac) is effective. I use the low dosage (75 mg twice a day) in conjunction with other antihistamines.
Because of esophageal dysmotility, GERD, LPR, etc. I had extensive esophageal testing done in 2015—but was negative for EE. Official diagnosis was ineffective swallowing w/hypersensitive esophagus, however I’ve never been aware of any functional swallowing difficulties. Recommended treatment was a PPI. My guess is that when they re-examine those (2015) biopsy slides using the proper stains, they’ll find an elevated # of mast cells, as was the case with my 2016 colonoscopy slides. My gastroenterologist has agreed to request further evaluation of mast cell issues by the pathologist.
If you have an upper endoscopy be sure to request a mast cell count, as well as EE, and whatever else they look for. If you suspect histamine issues you can request that your colonoscopy slides be reexamined for a mast cell count.
I stopped taking all supplements besides magnesium and Vitamin D, MethylGuard+ and P5P almost a year ago, and just began adding some others back fairly recently. When you’re in a flare seems like anything can wreak havoc. You might want to cut back to just a few “safe” foods until the turbulence subsides.
Teri
TeriM
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
Thanks, Tex and Teri. The reflux seems to have settled down in the last two days. Maybe from quitting the coconut? Not sure. So many variables...it's so hard to figure it all out. I'm thinking I will stop taking my probiotic for a while and see if that makes a difference. I think I also am going to eliminate all grains again for a while and see if that helps. I am really afraid that the grains are bothering me. I went for a month grain free and was losing too much weight, but my stools were much better. I apparently burn a lot of calories - which is probably how I got away with eating all the sugar and junk that I ate for so so many years without getting fat - but at the same time ruining my gut! It is so hard to maintain my weight with no carbs. I react to almonds, and without coconut my choices will be REALLY limited! *sigh*
~Louise
Lymphocytic Colitis diagnosed May 2017
"Laughter is an instant vacation." Milton Berle
Lymphocytic Colitis diagnosed May 2017
"Laughter is an instant vacation." Milton Berle
How about the non-grain carbs? I get most of my carbs from potatoes. Sweet potatoes might be another option for you. Avocados have a high fat content.
Tex
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
sorry you have had this set back -
reading the replies and conversations above my thoughts are:-
-is there risk of contamination (as mentioned by Tex)
- maybe it is non food triggers that is causing excess inflammation and symptoms - have you checked toiletries, beauty products etc for gluten, excess soy etc
- any other changes in routine?? work stress? family issues?
- any hormone issues going on? this can have big impact on MC
reflux symptoms can be a sign of low stomach acid - things like betaine HCL can help with this - and taking B6 and zinc is the natural approach to this.
hope this helps
yes, i would suggest going back to stage one basics, lots of home made bone broth, easy to digest low amount of ingredients eating plan is best way to reduce inflammation and support the body while something is going on.
i have done this many times during my MC journey.
reading the replies and conversations above my thoughts are:-
-is there risk of contamination (as mentioned by Tex)
- maybe it is non food triggers that is causing excess inflammation and symptoms - have you checked toiletries, beauty products etc for gluten, excess soy etc
- any other changes in routine?? work stress? family issues?
- any hormone issues going on? this can have big impact on MC
reflux symptoms can be a sign of low stomach acid - things like betaine HCL can help with this - and taking B6 and zinc is the natural approach to this.
hope this helps
yes, i would suggest going back to stage one basics, lots of home made bone broth, easy to digest low amount of ingredients eating plan is best way to reduce inflammation and support the body while something is going on.
i have done this many times during my MC journey.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Louise,
I’m sorry to hear that you have had setbacks. Within the past month, I have added non dairy yogurt back into my diet. Kite Hill almond yogurt is pretty good and then I tried So Delicious coconut yogurt. It certainly is so delicious and I thoroughly enjoyed it so much that I ate two of them on Friday. Mid day on Friday, I had loose stool, which I haven’t had in quite awhile. I think you have helped me identify the culprit. Too bad, because it was pretty yummy.
I hope you feel better and put on some weight. I have started using Earth Balance Soy Free spread on baked red potatoes and I think the extra calories in that have helped me gain some weight. I’ve also started eating Avocado, which I didn’t think I liked but realize that I do enjoy them.
Best wishes ~ Pam
I’m sorry to hear that you have had setbacks. Within the past month, I have added non dairy yogurt back into my diet. Kite Hill almond yogurt is pretty good and then I tried So Delicious coconut yogurt. It certainly is so delicious and I thoroughly enjoyed it so much that I ate two of them on Friday. Mid day on Friday, I had loose stool, which I haven’t had in quite awhile. I think you have helped me identify the culprit. Too bad, because it was pretty yummy.
I hope you feel better and put on some weight. I have started using Earth Balance Soy Free spread on baked red potatoes and I think the extra calories in that have helped me gain some weight. I’ve also started eating Avocado, which I didn’t think I liked but realize that I do enjoy them.
Best wishes ~ Pam
Probiotics and histamines
Louise,
Sorry to hear that your issues continue to worsen. It was definitely “So Delicious” coconut yogurt that initiated a major flare for me, at a time when things were otherwise calm. I immediately suspected the probiotics rather than the coconut, which I’d been eating for some time and continued to eat in abundance, during and after the flare. Although I can’t vouch for the website I thought this probiotic info was interesting and wondered if anyone else has looked into the probiotic/histamine connection. Three of the four cultures labeled as histamine raising are used in “So Delicious:”
https://wholenewmom.com/health-concerns ... robiotics/
Histamine Raising Probiotic Strains:
Lactobacillus bulgaricus
Lactobacillus casei
S. thermophilus
Lactobacillus delbrueckii
Of course we’re all different, but I found unsweetened coconut chips/flakes to be the single most helpful addition to my diet. Besides being delicious and filling, they seemed to actually settle my stomach when I couldn’t tolerate anything else. When I later started adding coconut milk and sometimes a touch of maple syrup, (and now a few blueberries) I was totally addicted. I stopped losing and finally began gaining weight—all 20 pounds. My diet is still quite restricted and colitis symptoms remain significantly reduced. I’m learning that most of my current issues are histamine/mast cell related and helped by antihistamines. At first I found this surprising since I never had significant allergies before now. But when I began taking antihistamines—including Ranitidine (Zantac), my colitis symptoms seemed to improve even more quickly than skin or respiratory problems. I’m still taking Ranitidine which also helps with GERD and esophageal issues.
If you haven’t already, you might want to look into histamines, to see if they’re problematic for you.
Hope you start improving soon.
Teri
Sorry to hear that your issues continue to worsen. It was definitely “So Delicious” coconut yogurt that initiated a major flare for me, at a time when things were otherwise calm. I immediately suspected the probiotics rather than the coconut, which I’d been eating for some time and continued to eat in abundance, during and after the flare. Although I can’t vouch for the website I thought this probiotic info was interesting and wondered if anyone else has looked into the probiotic/histamine connection. Three of the four cultures labeled as histamine raising are used in “So Delicious:”
https://wholenewmom.com/health-concerns ... robiotics/
Histamine Raising Probiotic Strains:
Lactobacillus bulgaricus
Lactobacillus casei
S. thermophilus
Lactobacillus delbrueckii
Of course we’re all different, but I found unsweetened coconut chips/flakes to be the single most helpful addition to my diet. Besides being delicious and filling, they seemed to actually settle my stomach when I couldn’t tolerate anything else. When I later started adding coconut milk and sometimes a touch of maple syrup, (and now a few blueberries) I was totally addicted. I stopped losing and finally began gaining weight—all 20 pounds. My diet is still quite restricted and colitis symptoms remain significantly reduced. I’m learning that most of my current issues are histamine/mast cell related and helped by antihistamines. At first I found this surprising since I never had significant allergies before now. But when I began taking antihistamines—including Ranitidine (Zantac), my colitis symptoms seemed to improve even more quickly than skin or respiratory problems. I’m still taking Ranitidine which also helps with GERD and esophageal issues.
If you haven’t already, you might want to look into histamines, to see if they’re problematic for you.
Hope you start improving soon.
Teri
TeriM
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
Thank you, everyone for the replies. I decided to go really extreme and do a 48 hour bone broth cleanse last weekend. I made some chicken broth and some beef broth. The first day I had nothing but chicken broth until about 5pm. I actually felt really good. Then I had a cup of beef broth and within an hour I had terrible reflux! My Enterolab testing had said that I was mildly reactive to beef, but I had never noticed any problem with it before, so I just sort of ignored that part of the lab results. I guess that was a mistake on my part! I actually only made it one day on the bone broth cleanse. I just had to have some food, so I had chicken soup with the chicken broth and carrots and meat that I had cooked in the broth. I have now eliminated beef from my diet, and all sugars and carbs...so no grains and not even any fruit at this point! I immediately started feeling better and the WD had cleared up. So this week I have been strictly protein and veggies. I find it tough to get enough calories and am afraid it's not good for me to eat as much protein as I do to try to feel full.
Today I had a setback. I was starving and ate something that sent me back to a bout of WD. I have suspicions, but not exactly sure what did it. Back to some chicken soup tomorrow.
Teri M, your comments regarding the probiotics in the coconut yogurt are very interesting. I am very sad that I can't seem to tolerate even non-dairy yogurt (I also react to almonds, so those are out). But if I can at least eat unsweetened coconut flakes, that would be wonderful!
The past couple of nights I have been having some leg muscle cramping at night. I have been using topical magnesium, but stopped the oral mag supps while fighting the WD. (Was taking Kirkman mag bisglycinate chelate). I took an oral mag this afternoon, and it was about 4 hours later that I had the WD episode, so now I'm afraid of them... Could the leg cramping be from stopping fruit? I was hoping I could get enough mag with the topical creams and epsom salt soaks.
So many variables. So difficult to sort it all out!!
Today I had a setback. I was starving and ate something that sent me back to a bout of WD. I have suspicions, but not exactly sure what did it. Back to some chicken soup tomorrow.
Teri M, your comments regarding the probiotics in the coconut yogurt are very interesting. I am very sad that I can't seem to tolerate even non-dairy yogurt (I also react to almonds, so those are out). But if I can at least eat unsweetened coconut flakes, that would be wonderful!
The past couple of nights I have been having some leg muscle cramping at night. I have been using topical magnesium, but stopped the oral mag supps while fighting the WD. (Was taking Kirkman mag bisglycinate chelate). I took an oral mag this afternoon, and it was about 4 hours later that I had the WD episode, so now I'm afraid of them... Could the leg cramping be from stopping fruit? I was hoping I could get enough mag with the topical creams and epsom salt soaks.
So many variables. So difficult to sort it all out!!
~Louise
Lymphocytic Colitis diagnosed May 2017
"Laughter is an instant vacation." Milton Berle
Lymphocytic Colitis diagnosed May 2017
"Laughter is an instant vacation." Milton Berle
Hi Louise,
Sorry that you're still having reactions. I have the same problem with beef — i can usually eat it without any major problems (only minor bloating), but when the chips are down, it can be a little too much. So I avoid it at all times now.
The leg cramps are most likely due to magnesium deficiency, but they could be due to a deficiency of potassium or calcium. That said, when we're at a critical point in our recovery, the balance can be so close that an otherwise-safe oral magnesium dose can upset the digestive system. When MC is active, it can make our digestive system so sensitive that it can turn it into a virtual mine field.
When my pharmacist first recommended the product at the link below, it seemed to work miracles. I rarely need to use it now, but I find that when i do, it sometimes doesn't work as well.
https://www.amazon.com/Hylands-Cramps-T ... 002YXUPGK/
Tex
Sorry that you're still having reactions. I have the same problem with beef — i can usually eat it without any major problems (only minor bloating), but when the chips are down, it can be a little too much. So I avoid it at all times now.
The leg cramps are most likely due to magnesium deficiency, but they could be due to a deficiency of potassium or calcium. That said, when we're at a critical point in our recovery, the balance can be so close that an otherwise-safe oral magnesium dose can upset the digestive system. When MC is active, it can make our digestive system so sensitive that it can turn it into a virtual mine field.
When my pharmacist first recommended the product at the link below, it seemed to work miracles. I rarely need to use it now, but I find that when i do, it sometimes doesn't work as well.
https://www.amazon.com/Hylands-Cramps-T ... 002YXUPGK/
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.
I also want to say that I DO feel like I am slowly getting better with the dietary changes, but it is very much of a roller coaster ride. Good days and bad days, but it seems like the good days are starting to outnumber the bad anyway, so I am hopeful. I appreciate all the support from everyone here!
~Louise
Lymphocytic Colitis diagnosed May 2017
"Laughter is an instant vacation." Milton Berle
Lymphocytic Colitis diagnosed May 2017
"Laughter is an instant vacation." Milton Berle