I’m new to this forum and new to my diagnosis of Lymphocytic Colitis. For the past few years I have had random episodes of profuse vomiting. I have had so much testing to determine what might be the cause but other than discovering my IgE levels are high and I‘m positive for ANA (indicating a possible autoimmune condition) my GP has not been able to offer much help (not from lack of trying). Last week I had my first ever colonoscopy and gastroscopy after worsening symptoms, including daily diarrhoea with cramping/pain. From that I have now been diagnosed with LC. I have my first specialist appointment tomorrow. I know this diagnosis definitely accounts for the diarrhoea but I’m wondering if it can also explain the vomiting episodes or should I be seeking further explanations/diagnoses?? The vomiting only occurs a couple of times a year and always after eating something that I myself have not personally cooked (I’m following a whole foods, non processed way of eating so make virtually all my own food). I should mention that I do have coeliacs disease (diagnosed 10+ years ago) but follow a very strict grain free diet.
Does anyone else experience vomiting as part of their LC diagnosis?? I’d appreciate anyone and everyone’s input!!
Thanks,
Sarah
PS. I’m Australian so please excuse some of the spelling or terminology that might be different...
LC and vomiting episodes
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hello Sarah,
Welcome to the group. I'm not a medical professional, but those vomiting episodes sound to me like food allergies. Food allergies cause high IgE levels, which can cause vomiting in severe cases. Many doctors still deny it, but the inflammation that causes LC also causes increased intestinal permeability (leaky gut), which in turn causes food intolerances. Nausea is often a symptom of LC, but in my case, I was almost always able to prevent vomiting by lying down and waiting until the crisis passed. LC depletes magnesium, and the nausea is worsened by a magnesium deficiency.
Only about a third of us seem to have the nausea/vomiting issue. For some of us, when the magnesium deficiency becomes severe enough, it can cause gastoparesis (delayed gastric emptying), similar to the condition suffered by some diabetics, and this leads to nausea and vomiting. I had that problem after reacting for an extended period.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. I'm not a medical professional, but those vomiting episodes sound to me like food allergies. Food allergies cause high IgE levels, which can cause vomiting in severe cases. Many doctors still deny it, but the inflammation that causes LC also causes increased intestinal permeability (leaky gut), which in turn causes food intolerances. Nausea is often a symptom of LC, but in my case, I was almost always able to prevent vomiting by lying down and waiting until the crisis passed. LC depletes magnesium, and the nausea is worsened by a magnesium deficiency.
Only about a third of us seem to have the nausea/vomiting issue. For some of us, when the magnesium deficiency becomes severe enough, it can cause gastoparesis (delayed gastric emptying), similar to the condition suffered by some diabetics, and this leads to nausea and vomiting. I had that problem after reacting for an extended period.
Again, welcome aboard, and please feel free to ask anything.
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 Sarah,
It is not the norm for me but I've had extreme vomiting twice after someone else cooked for me.
Once was very soon after my diagnosis.
Once was about 8 weeks ago when one of Mom's careivers cooked dinner. She made a gravy with cornstarch and milk.
My stomach started gurgling halfway through the meal. I vomited all night. I'm pretty certain I was reacting to the
cows milk and possibly reacting to the corn starch.
It is not the norm for me but I've had extreme vomiting twice after someone else cooked for me.
Once was very soon after my diagnosis.
Once was about 8 weeks ago when one of Mom's careivers cooked dinner. She made a gravy with cornstarch and milk.
My stomach started gurgling halfway through the meal. I vomited all night. I'm pretty certain I was reacting to the
cows milk and possibly reacting to the corn starch.
Apologies if this reply comes up twice...I posted something earlier but it seems to have disappeared.
Thanks for replying. I truly appreciate it.
My doctor suspected these episodes were anaphylactic reactions (other symptoms accompany the vomiting) but an allergist was unable to find any allergies that might be triggering them. I think they may be due to histamine intolerance and occur after my “histamine bucket” overfills. Food does not seem to be the only trigger - although it is the main one. I’ve also noted that heat and mould may also be triggers. But I can’t find a medical professional who will take this idea seriously.
Is there any link between LC and histamine intolerance??
As for magnesium, I actually used to take a supplement after getting leg cramps regularly but stopped when I thought I was “all better”!! I’ll look into adding this back in...
And I also believe that leaky gut is a contributing factor. I began the AutoImmune Protocol (AIP) diet a week ago after the colonoscopy. It’s a stricter version of Paleo...no eggs, Nightshades, nuts & seeds (and obviously no dairy or grains). It seems to be helping. I still have daily diarrhoea but the cramping/pain is less and the the bloating and wind pain has reduced to almost nothing.
Thanks again,
Sarah
Thanks for replying. I truly appreciate it.
My doctor suspected these episodes were anaphylactic reactions (other symptoms accompany the vomiting) but an allergist was unable to find any allergies that might be triggering them. I think they may be due to histamine intolerance and occur after my “histamine bucket” overfills. Food does not seem to be the only trigger - although it is the main one. I’ve also noted that heat and mould may also be triggers. But I can’t find a medical professional who will take this idea seriously.
Is there any link between LC and histamine intolerance??
As for magnesium, I actually used to take a supplement after getting leg cramps regularly but stopped when I thought I was “all better”!! I’ll look into adding this back in...
And I also believe that leaky gut is a contributing factor. I began the AutoImmune Protocol (AIP) diet a week ago after the colonoscopy. It’s a stricter version of Paleo...no eggs, Nightshades, nuts & seeds (and obviously no dairy or grains). It seems to be helping. I still have daily diarrhoea but the cramping/pain is less and the the bloating and wind pain has reduced to almost nothing.
Thanks again,
Sarah
There's a huge link. LC depletes diamine oxidase enzyme (DAO). The body uses histamine for many things, but one of the more important uses is to activate certain digestive functions, such as telling the stomach when to produce more gastric acid in order to digest a meal being eaten. If histamine doesn't attach to a parietal cell in the stomach, or one of the many allergen receptors, it remains in circulation and gradually builds up until it begins to initiate unexpected issues. DAO purges unused histamine from the body. But when the DAO level becomes too low to get the job done, we begin to have histamine issues. A search of the archives should bring up many posts about this.Sarah wrote:Is there any link between LC and histamine intolerance??
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.
Thank you so much. I finally feel like everything is adding up. For so long I’ve felt like I was going slightly crazy. But everything I’ve been investigating on my own now seem to be linking up. It makes such a difference to talk to people who experience similar symptoms and can help me from personal experience!
Sarah
Sarah
I’ve had actual allergy testing which was fairly useless. The allergist tested me for all the ingredients in the food I had eaten in my most recent vomiting episode and I wasn’t allergic to any of them. I did come back mildly allergic to dust but no food allergens were detected.YES! 100% agree Tex. I vomitted 2-3 times and realized it happened whenever I ate a food trigger (garlic for me was a big no-no). Have you had food testing done?
I’ve only recently chosen to do a food intolerance test. I’m not sure how helpful it will be. I’ve sent in a hair sample and will wait to see what it comes back with. I just can’t find a common food for each of the episodes which is why I think it’s more likely to be histamine itself rather than an actual food.
Although the high IgE has everyone stumped. Because as far as I’m aware, that should mean I’m actually have an allergic reaction to something rather than “just” a histamine buildup reaction. My GI has ordered more blood tests, including a repeat of the IgE to see if it’s still high, it will be interesting to see the results.
Hi Sarah,
Like Tex, I had severe nausea as part of my LC when it was active. Every morning I would wake up with nausea so intense I was afraid to move. Eating was impossible in the mornings and it would take 2-4 hours for it to subside. For me inflammation was both upper and lower GI.
Also, if I accidentally ingest soy, about 4 hours after that I will get hit with intense nausea. I take meclizine and Zofran when this happens and lie down, and basically cling to my bed while the dry heaves come and go. If I got up I would vomit, but who wants to get up when you feel like that? It takes 4-5 hours for it to subside.
I did find acupuncture to be immensely helpful in managing my daily nausea. I also supplement with Magnesium and D3. In the last year I’ve added zinc and vit C and noticed that my histamine/ seasonal allergies are much, much better.
You are on the right track and asking great questions. I had at least one Dr tell me ‘nausea is not part of Lymphocytic colitis’, but why would we expect the inflammation to stop at the small intestine? Both my functional med doc and acupuncturist tell me that ‘it’s all one long tube, from the sinuses and mouth on down’ and what can inflame one section can inflame all mucus membranes.
Hope this helps in some way-
Best wishes,
Carol
Like Tex, I had severe nausea as part of my LC when it was active. Every morning I would wake up with nausea so intense I was afraid to move. Eating was impossible in the mornings and it would take 2-4 hours for it to subside. For me inflammation was both upper and lower GI.
Also, if I accidentally ingest soy, about 4 hours after that I will get hit with intense nausea. I take meclizine and Zofran when this happens and lie down, and basically cling to my bed while the dry heaves come and go. If I got up I would vomit, but who wants to get up when you feel like that? It takes 4-5 hours for it to subside.
I did find acupuncture to be immensely helpful in managing my daily nausea. I also supplement with Magnesium and D3. In the last year I’ve added zinc and vit C and noticed that my histamine/ seasonal allergies are much, much better.
You are on the right track and asking great questions. I had at least one Dr tell me ‘nausea is not part of Lymphocytic colitis’, but why would we expect the inflammation to stop at the small intestine? Both my functional med doc and acupuncturist tell me that ‘it’s all one long tube, from the sinuses and mouth on down’ and what can inflame one section can inflame all mucus membranes.
Hope this helps in some way-
Best wishes,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Hi Carol and thanks so much for replying. The strange thing for me is that I don’t experience nausea on a day-to-day basis. I just have these random extreme episodes that lead to vomiting. The nausea always begins 2 hours after I’ve eaten and the only time I’ve manage to stop it progressing to vomiting is when I took Ondansetron (which I was prescribed after a number of these episodes had occurred and I was told to keep them on me at all times to prevent escalation when I felt symptoms coming on).
I’ve also been reading through Tex’s book and the section on Mast Cells confirmed to me that (in my opinion) I have mast cell “issues”. I believe that I actually have a Mast Cell Activation Disorder but the criteria to confirm this makes it very difficult to get a definite diagnosis (I meet 2 of the 3 criteria but the third one is increased tryptase levels within 2 hours of an episode and getting this tested in such a short time span is proving impossible).
Anyway, sorry for my rambling. I’ve had a lot of thoughts going through my mind over the last week or so!
Sarah
I totally agree. And interestingly my own results confirm this. Not only do I have increased lymphocytes in my colon (ie LC) but the gastroscopy also showed increased lymphocytes in my duodenum. The pathology report states “these changes may be related to coeliac disease; however, the differential diagnosis includes other protein allergies...and autoimmune diseases”. My GI just said that these findings confirm my coeliac diagnosis but I’ve taken some time to think about this and I don’t necessarily agree. I’ve been gluten free for 10+ years so gluten should not be an issue causing increased lymphocytes in my digestive system. I’m inclined to think that there is another protein causing this - and this could be contributing to my vomiting episodes.why would we expect the inflammation to stop at the small intestine?
I’ve also been reading through Tex’s book and the section on Mast Cells confirmed to me that (in my opinion) I have mast cell “issues”. I believe that I actually have a Mast Cell Activation Disorder but the criteria to confirm this makes it very difficult to get a definite diagnosis (I meet 2 of the 3 criteria but the third one is increased tryptase levels within 2 hours of an episode and getting this tested in such a short time span is proving impossible).
Anyway, sorry for my rambling. I’ve had a lot of thoughts going through my mind over the last week or so!
Sarah
Sarah,
That's the way that nausea affected us, randomly, although in my case, not normally after meals. That suggests a reaction to something in that meal, so I suspect that you might be correct about the possible existence of an additional protein allergy. I don't recall ever seeing any research data on this issue, but I wonder if it isn't also possible that your system might be producing too much histamine on those occasions, and the excess is causing the nausea.
Another possibility is gastroparesis (delayed stomach opening), which can cause nausea as the chyme begins to ferment in the warm environment and the new meal causes overfilling.
Tex
That's the way that nausea affected us, randomly, although in my case, not normally after meals. That suggests a reaction to something in that meal, so I suspect that you might be correct about the possible existence of an additional protein allergy. I don't recall ever seeing any research data on this issue, but I wonder if it isn't also possible that your system might be producing too much histamine on those occasions, and the excess is causing the nausea.
Another possibility is gastroparesis (delayed stomach opening), which can cause nausea as the chyme begins to ferment in the warm environment and the new meal causes overfilling.
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.
Yep, histamine is *definitely* a factor in my opinion. I wish it wasn’t. A single food allergy would be so much “easier” to deal with. Histamine overloads are so unpredictable. I‘ve been finding it all very overwhelming. But I’m feeling more hopeful about it now. I really think with the changes I’ve made to my diet there might just be an end to the roller coaster in time! Already my daily symptoms are slowly but surely improving...
So I just got my latest blood test results and my IgE levels are still very high. I’m being sent back to an allergist for further testing. I’ve already been tested for the obvious things such as egg white, cows milk, peanuts, soy, wheat, corn & cocoa and they’ve all come back clear. In fact that allergist indicated that the “clinical findings are not consistent with a food allergy”.
Does anyone know if it’s possible to have mast cell activation cause an IgE reaction without actually being allergic to anything in particular???
Sorry for the millions of questions I’ve been asking since joining the forum!
Sarah
Does anyone know if it’s possible to have mast cell activation cause an IgE reaction without actually being allergic to anything in particular???
Sorry for the millions of questions I’ve been asking since joining the forum!
Sarah
Hi Sara,
While you are sorting out what prompts your nausea, if you want to address overall histamine issues, this post by Tex may be helpful. This same approach has been very helpful to me in both the short and long term.
https://www.perskyfarms.com/phpBB2/view ... ht=vitamin
Best wishes-
Carol
While you are sorting out what prompts your nausea, if you want to address overall histamine issues, this post by Tex may be helpful. This same approach has been very helpful to me in both the short and long term.
https://www.perskyfarms.com/phpBB2/view ... ht=vitamin
Best wishes-
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Sarah,
Regarding the tests that your allergist is using, for most of us, those test results are only marginally helpful, and often totally useless. The antibodies that matter (regarding food sensitivities) are produced in the intestines, and they rarely show up in the blood in sufficient quantities that they can be detected. Allergists rarely understand that, and those that do are scarce as hen's teeth.
The only food intolerance tests in the world that we have found to be accurate and reliable are the stool tests offered by EnteroLab in Dallas,Texas. When a panel of tests is ordered, they send out a sample collection kit. The sample must be frozen and sent back to the lab by overnight delivery. That might be expensive from your location, but it's probably doable. We've had members from as far away as Hong Kong successfully order from the lab in the past. Here's a link to their US website:
https://www.enterolab.com/
Tex
Regarding the tests that your allergist is using, for most of us, those test results are only marginally helpful, and often totally useless. The antibodies that matter (regarding food sensitivities) are produced in the intestines, and they rarely show up in the blood in sufficient quantities that they can be detected. Allergists rarely understand that, and those that do are scarce as hen's teeth.
The only food intolerance tests in the world that we have found to be accurate and reliable are the stool tests offered by EnteroLab in Dallas,Texas. When a panel of tests is ordered, they send out a sample collection kit. The sample must be frozen and sent back to the lab by overnight delivery. That might be expensive from your location, but it's probably doable. We've had members from as far away as Hong Kong successfully order from the lab in the past. Here's a link to their US website:
https://www.enterolab.com/
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.