Howdy!
I am a brand new member and am already amazed at the wealth of information available on this site. Thank you!
A little about me. I'm 38 years old and have been dealing with LC for the past 12 years. I believe the likely cause was an excessive cocktail of SSRIs prescribed to me in my early 20s by a psychiatrist who is no longer in practice due to "overprescribing" other patients (that's the story I've heard)... Anyhow, I started dealing with chronic D and figured it was just a side effect of the meds I was taking for a bout of depression & stress during my last year of college.
When the GI issues didn't get better after about 2 years off the SSRIs, I began to worry. So I saw GI doc #1. Colonoscopy revealed my LC. And GI doc #1 told me to get an XXL tub of Metamucil and drink that 3-4 times a day, and also take Pepto Bismol tabs 4-6 times a day, and "you'll feel better." Well, you probably guessed it by now, I got worse!
Fast forward a year and now I'm on to GI doc #2. I did some research and this one seemed to be more experienced and knowledgable on intestinal and autoimmune disorders. I was prescribed Budesnoide, 3 per day, with a "taper down" program after a few months because "you'll feel better"... Well, I must say that it did help reduce the frequency of D from 8-10 times a day to 2-3. Did nothing to help the watery-ness or explosiveness, but I did find 2-3 bouts was much better than 8-10! When I tapered down, the frequency increased again like clock work. So back to GI #2 and he put me on another identical "round" of Budesonide with the same "taper down" regimen.
Isn't the definition of insanity doing the same thing over and over and hoping for a different result? Yep. This is insanity! So I gave up on GI doc #2 and did some research on my own. Tried some diet changes (GF, DF, SF) for a few months- got some ok results, but still watery D and gas/bloating/cramps- I kept meticulous food journals for months and could never pinpoint what was causing flares and improvements. Sometimes I ate the same thing for a week straight and I'd have good days and really bad days. Tried vegan for about a year- no good. Got mad and decided that it would never get better and ate/drank what I wanted. Then a few years ago, I noticed that sometimes when I ate I felt like I was choking and my chest REALLY hurt. It started out happening once every month or two, then kept increasing over a few years, until about six months ago when I was getting these symptoms at least once a day, sometimes more.
Afraid to go back to "insanity" with GI #2, not wanting to try and find potential GI #3, and feeling awful, I did some research and found an exact match for my choking and pain symptoms: Esinophilic Esophagitis (EoE), another autoimmune disease. Now what the heck do I do?
About a week after the EoE discovery, I decided it was time to go on a diet to avoid my usual gorge-fest over the holidays. I decided to give the Keto diet a go, starting October 28th of this year. Amazingly enough, the symptoms of EoE have completely vanished. I'm not kidding. GONE! So then I came to the conclusion that the EoE was being triggered by food. Nothing else in my life changed besides stopping the consumption of all grains and potatoes. So that must have been the trigger! Which led me to do more research and wonder if anyone else out there with LC also has EoE and what they've done to help control the symptoms. I also found that not consuming many carbs or grains has reduced my trips to the bathroom down to 2 maybe 3 times per day and I have no more bloating or gas- ever. Still watery D, but I'm doing as good as I was on the full dosage of Budesonide. Go figure!
I should also mention that GI doc #2 ran my blood test and told me that I was negative for Celiac. So gluten is supposedly not a problem for me... I am not convinced that is the case given what I've experienced. Also tested low for Vitamin D levels, so taking 7000 IU/day. And also Magnesium Glycinate 400mg, + daily multi-vitamin.
It's great to have found this wonderful site with tons of people like me. What a relief!
Well, enough about my story, I'd love to hear your stories and advice.
Cheers y'all!
RanchGal424
Hello! New to this site and glad to have found it! LC + EoE
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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RanchGal424
- Posts: 19
- Joined: Wed Dec 05, 2018 4:46 pm
Howdy, RanchGal,
Welcome to the group. You have learned so much on your own that it makes one wonder if the doctors you've been seeing ever bother to try to update their knowledge. It sounds as though your diet is close, but something is still causing inflammation. GF, DF, SF, low carb diets will help to resolve a lot of problems. But we need to find the key to the puzzle that's preventing you from reaching remission. Somewhere, there has to be a key.
But before I ramble very much, it's past my bedtime, so I'd better take a shower and hit the hay. If you don't get up early these days, it's tough to get anything worthwhile done.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. You have learned so much on your own that it makes one wonder if the doctors you've been seeing ever bother to try to update their knowledge. It sounds as though your diet is close, but something is still causing inflammation. GF, DF, SF, low carb diets will help to resolve a lot of problems. But we need to find the key to the puzzle that's preventing you from reaching remission. Somewhere, there has to be a key.
But before I ramble very much, it's past my bedtime, so I'd better take a shower and hit the hay. If you don't get up early these days, it's tough to get anything worthwhile done.
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 Ranch Gal,
Welcome, you are at the right place. If you don't already have Tex's (Wayne's) book link is in the upper right hand corner.
It is the only book anywhere written on MC. It is worth it.
Anyways, top middle link is a link that says suggested eating plan that Gabes came up with. Check that out.
Diet changes can take awhile. It sounds like you are on the right track. Since you are still having WD consider
switch to magnesium oil or epsom salt baths for awhile and consider eliminate the vitamin for 2-3 weeks and
see how you do. I found I had to eliminate all oral supplements short term to kick into remission. I am in
remission now and can tolerate supplements.
Welcome, you are at the right place. If you don't already have Tex's (Wayne's) book link is in the upper right hand corner.
It is the only book anywhere written on MC. It is worth it.
Anyways, top middle link is a link that says suggested eating plan that Gabes came up with. Check that out.
Diet changes can take awhile. It sounds like you are on the right track. Since you are still having WD consider
switch to magnesium oil or epsom salt baths for awhile and consider eliminate the vitamin for 2-3 weeks and
see how you do. I found I had to eliminate all oral supplements short term to kick into remission. I am in
remission now and can tolerate supplements.
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RanchGal424
- Posts: 19
- Joined: Wed Dec 05, 2018 4:46 pm
All,
Thank you so much for your replies and support!
Tex- I agree that I am getting close to figuring out how to reach remission, but not quite there yet. I am open to any suggestions you and others may have to figure out how I can get there someday.
I do plan to visit an Allergist here locally to see if my specific food sensitivities can be better pinpointed. Have folks found that an Allergist/Immunologist is able/willing to help with the Enterolab testing? I am fortunate to have really great, comprehensive health insurance- so if I can get the necessary tests through an HCP, that would be fantastic, rather than paying out of pocket for the whole bout.
Also, I forgot to mention in my introduction that my husband and I own a horse ranch, hence the "RanchGal" screen name- I am busy ranching every day! We have 36 horses we're currently caring for.
Cheers y'all!
RanchGal
Thank you so much for your replies and support!
Tex- I agree that I am getting close to figuring out how to reach remission, but not quite there yet. I am open to any suggestions you and others may have to figure out how I can get there someday.
I do plan to visit an Allergist here locally to see if my specific food sensitivities can be better pinpointed. Have folks found that an Allergist/Immunologist is able/willing to help with the Enterolab testing? I am fortunate to have really great, comprehensive health insurance- so if I can get the necessary tests through an HCP, that would be fantastic, rather than paying out of pocket for the whole bout.
Also, I forgot to mention in my introduction that my husband and I own a horse ranch, hence the "RanchGal" screen name- I am busy ranching every day! We have 36 horses we're currently caring for.
Cheers y'all!
RanchGal
LC symptoms since 2006
Diagnosed with LC: 2010
GF DF since 2018, EF since 2019
Determined to reach remission!
Diagnosed with LC: 2010
GF DF since 2018, EF since 2019
Determined to reach remission!
MC reactions to certain foods and drugs are primarily IgA-based reactions. I'm pretty sure that most allergists are not accustomed to dealing with IgA-based reactions (they deal in skin and respiratory-based reactions, which are IgE and IgG reactions), so they're generally not at all familiar with (nor even trained to consider) IgA-based reactions. In general, unless they've been specially trained at Brigham and Women's Hospital in Boston under the direction of Dr. Maria Castells, they consider digestive systems to be the turf of gastroenterologists. Therefore they're not likely to order any IgA testing to determine food sensitivities. But I could be wrong — maybe some of them are beginning to consider digestive system issues. 
The IgE and IgG testing that they use has been found to be pretty much worth useless for our purposes as MC patients. So far, the tests offered by EnteroLab have been found to be the only accurate and reliable tests available for determining food sensitivities.
Your GP can order EnteroLab testing if he or she is willing (open minded). Or you can call the lab and ask for the insurance codes of the tests that you need and then call your insurance company and ask them if they if they cover those tests. If they do, they may be willing to reimburse you for all or part of the cost of the tests even if you order the tests yourself. Quite a few members have gone those routes. Even in cases where we've had to pay out of pocket for the EnteroLab tests, almost everyone who has done that considers it to be the best money they've ever spent on their personal health care. But it's certainly easier to have the tests covered by insurance if you can convince a doctor to order them for you.
Tex
The IgE and IgG testing that they use has been found to be pretty much worth useless for our purposes as MC patients. So far, the tests offered by EnteroLab have been found to be the only accurate and reliable tests available for determining food sensitivities.Your GP can order EnteroLab testing if he or she is willing (open minded). Or you can call the lab and ask for the insurance codes of the tests that you need and then call your insurance company and ask them if they if they cover those tests. If they do, they may be willing to reimburse you for all or part of the cost of the tests even if you order the tests yourself. Quite a few members have gone those routes. Even in cases where we've had to pay out of pocket for the EnteroLab tests, almost everyone who has done that considers it to be the best money they've ever spent on their personal health care. But it's certainly easier to have the tests covered by insurance if you can convince a doctor to order them for you.
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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RanchGal424
- Posts: 19
- Joined: Wed Dec 05, 2018 4:46 pm
Tex- thank you. I’ll check to see if I can get a Primary Care doc to help. I’m actually ready to seek out a new one, as the physician I’ve been working with for years has recently retired.
Have folks found that more of a naturopath (sp?) or an internal medicine specialist, or other? are more “open” to alternative explanations and tests (unlike most GI’s)?
Gabe- thank you for your reply. To answer your question, we feed alfalfa hay and some of the horses get beet pulp shreds and/or alfalfa pellets with their hay. Some get whole (unrolled) oats. I’ve never thought of the reaction that may be caused by inhaling the dust. All the more reason to get to the bottom of what I am unable to tolerate!
Have folks found that more of a naturopath (sp?) or an internal medicine specialist, or other? are more “open” to alternative explanations and tests (unlike most GI’s)?
Gabe- thank you for your reply. To answer your question, we feed alfalfa hay and some of the horses get beet pulp shreds and/or alfalfa pellets with their hay. Some get whole (unrolled) oats. I’ve never thought of the reaction that may be caused by inhaling the dust. All the more reason to get to the bottom of what I am unable to tolerate!
LC symptoms since 2006
Diagnosed with LC: 2010
GF DF since 2018, EF since 2019
Determined to reach remission!
Diagnosed with LC: 2010
GF DF since 2018, EF since 2019
Determined to reach remission!
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RanchGal424
- Posts: 19
- Joined: Wed Dec 05, 2018 4:46 pm
Tex- thank you. I’ll check to see if I can get a Primary Care doc to help. I’m actually ready to seek out a new one, as the physician I’ve been working with for years has recently retired.
Have folks found that more of a naturopath (sp?) or an internal medicine specialist, or other? are more “open” to alternative explanations and tests (unlike most GI’s)?
Gabe- thank you for your reply. To answer your question, we feed alfalfa hay and some of the horses get beet pulp shreds and/or alfalfa pellets with their hay. Some get whole (unrolled) oats. I’ve never thought of the reaction that may be caused by inhaling the dust. All the more reason to get to the bottom of what I am unable to tolerate!
Have folks found that more of a naturopath (sp?) or an internal medicine specialist, or other? are more “open” to alternative explanations and tests (unlike most GI’s)?
Gabe- thank you for your reply. To answer your question, we feed alfalfa hay and some of the horses get beet pulp shreds and/or alfalfa pellets with their hay. Some get whole (unrolled) oats. I’ve never thought of the reaction that may be caused by inhaling the dust. All the more reason to get to the bottom of what I am unable to tolerate!
LC symptoms since 2006
Diagnosed with LC: 2010
GF DF since 2018, EF since 2019
Determined to reach remission!
Diagnosed with LC: 2010
GF DF since 2018, EF since 2019
Determined to reach remission!
Definitely. Especially when food sensitivities are an issue. Most gastroenterologists tend to go by the book. If a treatment isn't published medical research, or a test isn't mainstream, they typically deny it's value. They classify it as "hogwash". Published research shows that most allopathic doctors know almost nothing about food sensitivities, let alone how to treat them.RanchGal wrote:Have folks found that more of a naturopath (sp?) or an internal medicine specialist, or other? are more “open” to alternative explanations and tests (unlike most GI’s)?
The biggest problem with naturopaths is that they tend to go overboard with supplements when treating an MC patient, because we often have so many deficiencies. But less is more when trying to break out of a flare. The fewer supplements we take during recovery, the faster we usually recover. Many recoveries have been stalled or aborted because a naturopath or dietitian recommended too many supplements. It's much more practical to address vitamin and mineral deficiencies after we are in remission. Except for vitamin D and magnesium deficiencies, because if those deficiencies are bad enough, that may prevent healing (due to a severely compromised immune system).
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.