Hi all! I'm new and wanted to be sure it is ok to post here. I want to be sure it's ok to post since I have not been formally dxed with MC yet. I was dx with Celiac Disease about 3 yrs ago. I don't want to intrude on your community if this is not acceptable however without a formal MC dx. Cliff notes:
I had GI issues off and on for about 25 yrs (will be 45 yo on Friday the 26th) and for the past almost 5 yrs have been following a clean eating and healthy fitness plan (body building) with professional trainers. Was dx with CD as mentioned and followed CD diet & felt much better with bouts of weird stomach issues on occasion (nausea and diarrhea) but nothing major. Was dx with H. Pylori and Chronic Gastritis at the time of CD which was tx. However, the stomach pains would persist and the gastritis as well (no H. Pylori though). Subsequent bx revealed chronic gastritis of no known cause.
In October of last year I became tired, somewhat weak, worsening GI issues, started to lose weight. Was dxed with Pre Diabetes (my grandparents, parents etc have/had diabetes type I although they thought was Type II) and was told sx was likely that. Nausea, D and fatigue continued for a couple of months to the point where it became worrisome and the pain was awful. I lost over 25 lbs (I'm 5' 4.5" and weighed 105 lbs from 130lbs of muscle). EGD revealed possible Refractory CD and epithelial lymphocytes. CT scan ordered - was told I had a tumor and my lymph nodes lit up and needed emergency surgery.
Had surgery, was told no tumor but appendix was removed however, it was not appendicitis - it was literally damaged by the chronic GI issues I had been experiencing. The lymph nodes calmed down, however, I was shedding lymphocytes from my GI tract and I do not produce Gastrin in my stomach. Because I had surgery, they could not get in and do a colonoscopy until I healed and they wanted me to gain weight, still could not eat due to pain. They also needed more bx to confirm the oddities from the EGD bx results and see if I had refractory CD - which would be not very good for me. So over the past 7 weeks I've been trying to eat more - not going well - and gain weight - have not gained an ounce.
They say I'm not getting enough nutrients from my food. I'm not anemic however, they are saying if I cannot gain weight soon they want to place a PEG tube. The pain is awful. I do not have D anymore. I cannot eat anything other than soft foods and small amounts but the pain is present whether I eat or not but worse when I eat - no matter what I eat. Had colonoscopy yesterday and he is checking for MC.
And just to make the picture more complicated - I had horrific pain last week that landed me in the ER - I passed a kidney stone, had a CT scan, and they said I have another one to pass. And I have to have a hysterectomy in a month. The pain kinda all runs together after a while. :)
I'm asking you wise and experienced folks for guidance on anything I should be asking for at this point if you're willing to share. Tests, questions, etc to make this journey easier as I go along. I'm unsure if I have MC along with the CD. I don't know the significance of not producing Gastrin but considering it's the beginning of the digestive process of the GI tract I know it will have to be addressed at some point and thought maybe someone else has gone through that. I have a long family hx of gastric and pancreatic cancers so I'm concerned about that but so far I think I'm clear. If I'm intruding, please let me know and I won't post again until I have a firm MC dx. Thanks so much!
New - Ok to have joined youir community? Questions/Guidance
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Welcome Allie! I think it is safe for me to say that! The sight specialized in MC, but have seen all with IBD conditions are welcome. Happy birthday! You are the same age as me. Sad to read that we share the similar length of time with stomach problems, 25 years. It's a terrible disease to have to say the least.
I don't have much more to add other than better help will be along soon. Best of luck in figuring out what is going wrong.
I don't have much more to add other than better help will be along soon. Best of luck in figuring out what is going wrong.
Hi Allie,
Sure, you are welcome to post here. Welcome aboard. We speak "celiac" here also, FWIW, because all of us are at least as sensitive to gluten as the average celiac. I'm not a physician, but I've had plenty of personal experience with what you are dealing with, and it is painfully clear that you almost surely have MC and it is the cause of virtually all of your current health issues.
Here is my take on your situation:
You probably had MC when your CD was diagnosed, that's why your treatment is refractory and why you have gastritis. MC can affect any part of the digestive system, and many of us have stomach involvement (elevated gastric intraepithelial lymphocyte counts, diagnostic of LC, IOW, identical to the pattern of inflammation consistent with a diagnosis of LC in the colon). Most of us have small intestinal involvement (IOW elevated intraepithelial lymphocytic counts). Most gastroenterologists still do not realize that the small intestine and stomach can be involved with MC, so they are lost (because the original medical description of MC was incorrect, by limiting it to the colon).
That's a crying shame that they subjected you to surgery because of their incompetence in understanding MC. Our lymph nodes are commonly inflamed and enlarged when MC is active.
Your kidney stones are almost surely due to a chronic magnesium deficiency caused by the fact that IBDs deplete magnesium and also restrict magnesium absorption due to the serious malabsorption problem that results when the small intestine is inflamed. Been there, done that, so I know from experience that magnesium deficiency is the most common cause of kidney stones. You are also almost surely vitamin D deficient (also because of the fact that IBDs deplete vitamin D, and because of the malabsorption problem, that prevents us from absorbing enough from food or normal supplements. The combination of deficiencies of both vitamin D and magnesium virtually guarantees an elevated risk of kidney stones.
Many of us have had to deal with the malabsorption issues until we changed our diet and allowed our digestive system to heal. Most of us are sensitive to gluten, casein, soy, and eggs. Some have additional food sensitivities. We have to minimize fiber and sugar in our diet because we lose the ability to properly digest most sugars when our small intestine is inflamed, and fiber is so irritating to a gut that is already hyperinflamed that fiber can perpetuate the inflammation and prevent remission.
Your inability to produce gastrin may be due to the inflammation in your stomach. You can supplement with Betaine HCL to provide hydrochyloric acid for digestion until you are able to stop the inflammation and do some healing in response to diet changes. After you eliminate the foods in your diet that are causing your immune system to produce antibodies that result in the inflammation all over your digestive system, the inflammation will slowly resolve and your digestive system will begin to heal.
Topically-applied magnesium oil or Epsom salt foot baths (or adding Epsom salts to the bath water) is the most effective way to resolve your magnesium deficiency and stop the kidney stones from forming. Oral magnesium supplements can be used, but large doses can act as a laxative, so for MC patients, topical application of at least part of the treatment can prevent problems with diarrhea.
Again, welcome aboard and please feel free to ask anything.
Tex
Sure, you are welcome to post here. Welcome aboard. We speak "celiac" here also, FWIW, because all of us are at least as sensitive to gluten as the average celiac. I'm not a physician, but I've had plenty of personal experience with what you are dealing with, and it is painfully clear that you almost surely have MC and it is the cause of virtually all of your current health issues.
Here is my take on your situation:
You probably had MC when your CD was diagnosed, that's why your treatment is refractory and why you have gastritis. MC can affect any part of the digestive system, and many of us have stomach involvement (elevated gastric intraepithelial lymphocyte counts, diagnostic of LC, IOW, identical to the pattern of inflammation consistent with a diagnosis of LC in the colon). Most of us have small intestinal involvement (IOW elevated intraepithelial lymphocytic counts). Most gastroenterologists still do not realize that the small intestine and stomach can be involved with MC, so they are lost (because the original medical description of MC was incorrect, by limiting it to the colon).
That's a crying shame that they subjected you to surgery because of their incompetence in understanding MC. Our lymph nodes are commonly inflamed and enlarged when MC is active.
Your kidney stones are almost surely due to a chronic magnesium deficiency caused by the fact that IBDs deplete magnesium and also restrict magnesium absorption due to the serious malabsorption problem that results when the small intestine is inflamed. Been there, done that, so I know from experience that magnesium deficiency is the most common cause of kidney stones. You are also almost surely vitamin D deficient (also because of the fact that IBDs deplete vitamin D, and because of the malabsorption problem, that prevents us from absorbing enough from food or normal supplements. The combination of deficiencies of both vitamin D and magnesium virtually guarantees an elevated risk of kidney stones.
Many of us have had to deal with the malabsorption issues until we changed our diet and allowed our digestive system to heal. Most of us are sensitive to gluten, casein, soy, and eggs. Some have additional food sensitivities. We have to minimize fiber and sugar in our diet because we lose the ability to properly digest most sugars when our small intestine is inflamed, and fiber is so irritating to a gut that is already hyperinflamed that fiber can perpetuate the inflammation and prevent remission.
Your inability to produce gastrin may be due to the inflammation in your stomach. You can supplement with Betaine HCL to provide hydrochyloric acid for digestion until you are able to stop the inflammation and do some healing in response to diet changes. After you eliminate the foods in your diet that are causing your immune system to produce antibodies that result in the inflammation all over your digestive system, the inflammation will slowly resolve and your digestive system will begin to heal.
Topically-applied magnesium oil or Epsom salt foot baths (or adding Epsom salts to the bath water) is the most effective way to resolve your magnesium deficiency and stop the kidney stones from forming. Oral magnesium supplements can be used, but large doses can act as a laxative, so for MC patients, topical application of at least part of the treatment can prevent problems with diarrhea.
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.
Welcome Allie.........
So sorry to read your history and about your difficulties past and present. I sincerely hope you find peace within your body soon and an end to your distressing pain very soon.
I'm not officially diagnosed as having MC or intolernces purely because it appears the medical fraternity are obsessed with testing and proving by testing. In years gone by clinical evidence counted for something.
Clinically, my picture is MC and numerous suspected intolerances. I chose to proceed down a very non-invasive conservative route of treatment and believe this was a good decision for myself.
Jen
So sorry to read your history and about your difficulties past and present. I sincerely hope you find peace within your body soon and an end to your distressing pain very soon.
I'm not officially diagnosed as having MC or intolernces purely because it appears the medical fraternity are obsessed with testing and proving by testing. In years gone by clinical evidence counted for something.
Clinically, my picture is MC and numerous suspected intolerances. I chose to proceed down a very non-invasive conservative route of treatment and believe this was a good decision for myself.
Jen
Psoriatic Arthritis
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
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Allie,
I also have no official MC diagnosis. In fact I believe when I joined here I asked if it was ok to be here without a diagnosis. I know I asked whether I should get a colonoscopy in order to get an official diagnosis. The answer was that it wasn't necessary as long as I wanted to treat myself through dietary means since my symptoms conformed to MC. My history was much like yours in that my intestinal problems had been lifelong. A diagnosis is needed if you want a prescription drug like Entocort. I went the exclusive dietary route, using Enterolab testing to help identify my food sensitivities. I am happy to report that my disease is in remission. The advice I have gotten here has allowed me to get my life back. I'm glad you found us. It's time for you to get your life back too.
Jean
I also have no official MC diagnosis. In fact I believe when I joined here I asked if it was ok to be here without a diagnosis. I know I asked whether I should get a colonoscopy in order to get an official diagnosis. The answer was that it wasn't necessary as long as I wanted to treat myself through dietary means since my symptoms conformed to MC. My history was much like yours in that my intestinal problems had been lifelong. A diagnosis is needed if you want a prescription drug like Entocort. I went the exclusive dietary route, using Enterolab testing to help identify my food sensitivities. I am happy to report that my disease is in remission. The advice I have gotten here has allowed me to get my life back. I'm glad you found us. It's time for you to get your life back too.
Jean
Thanks so much everyone! Although I was in competition shape for body building, and thank God I was, I seemed to fall off a cliff in October last year. It hit hard. I look like an emaciated person now and it only took 3 months! Hopefully the colonoscopy will shed light on MC. (Part of why I made the commitment to body building was my health challenges and I felt so good about my progress)
Tex the surgery was necessary unfortunately because of the damage to the appendix. But it was rare to have it happen that way per the surgeon. I will definitely check out the things you recommend. I cannot tolerate any magnesium by mouth. Even in Gatorade etc. I also was on protonix at one point which did me in. My magnesium level was tested and was OK. They are following me for neuroendocrine tumors. So far I'm OK. The GF diet helped immensely and was no problem sticking to for me. I can eliminate other foods if needed.
The challenge is my weight. If I don't gain soon, I'm going to have to fight the PEG tube. I have a heart condition and have had 2 heart surgeries and I have severe POTS (blood pressure averages 90/50 with a high risk med to raise it) so they won't let me fool around for too long with this. I also have the major surgery coming up. I have to be able to get through that without losing weight and heal. This is a pain! I went from being the most fit person with stomach challenges to not allowed to expend any energy burning off calories and the threat of a PEG.
I totally believe whatever I need to do I will. I just need the information and answers. You guys are an invaluable source and I greatly appreciate your time. My DTR had her colon removed at 17 yo due to ulcerative colitis. She's a trooper and completely recovered. She too has CD. We get through. Life goes on. It's all in how you approach it. :)
Tex the surgery was necessary unfortunately because of the damage to the appendix. But it was rare to have it happen that way per the surgeon. I will definitely check out the things you recommend. I cannot tolerate any magnesium by mouth. Even in Gatorade etc. I also was on protonix at one point which did me in. My magnesium level was tested and was OK. They are following me for neuroendocrine tumors. So far I'm OK. The GF diet helped immensely and was no problem sticking to for me. I can eliminate other foods if needed.
The challenge is my weight. If I don't gain soon, I'm going to have to fight the PEG tube. I have a heart condition and have had 2 heart surgeries and I have severe POTS (blood pressure averages 90/50 with a high risk med to raise it) so they won't let me fool around for too long with this. I also have the major surgery coming up. I have to be able to get through that without losing weight and heal. This is a pain! I went from being the most fit person with stomach challenges to not allowed to expend any energy burning off calories and the threat of a PEG.
I totally believe whatever I need to do I will. I just need the information and answers. You guys are an invaluable source and I greatly appreciate your time. My DTR had her colon removed at 17 yo due to ulcerative colitis. She's a trooper and completely recovered. She too has CD. We get through. Life goes on. It's all in how you approach it. :)
Allie
Tex,
Has anyone ever looked into organ function with MC? When I was younger I had to have my gallbladder removed because it stopped functioning. I'm wondering if there isn't something similar going on with the pancreas now. With the lack of gastrin, there may be a downstream affect with secretin or cck. Has any of this come across your desk in your research?
I used to work in neurosurgery before I went into neuropsychology. (I assisted in surgery. I worked with some great researchers and surgeons.) I've been looking into the literature. There is a lot out there concerning IBD but not a whole lot in relation to MC. Thanks!
Has anyone ever looked into organ function with MC? When I was younger I had to have my gallbladder removed because it stopped functioning. I'm wondering if there isn't something similar going on with the pancreas now. With the lack of gastrin, there may be a downstream affect with secretin or cck. Has any of this come across your desk in your research?
I used to work in neurosurgery before I went into neuropsychology. (I assisted in surgery. I worked with some great researchers and surgeons.) I've been looking into the literature. There is a lot out there concerning IBD but not a whole lot in relation to MC. Thanks!
Allie
Allie,
Based on the accumulated experience of the members of this discussion forum, gallbladder issues are very common with MC and so is pancreatitis. Those issues virtually always resolve on their own after the intestinal inflammation is controlled. In some cases MC can inflame almost any organ in the body, but particularly any organ in the digestive system. We are also at increased risk of various other issues. For example according to an informal poll, we are approximately 7 times as likely to have thyroid problems, compared with someone in the general population.
But precious little research is dedicated to the disease itself, let alone satellite issues, so I'm not aware of any formal research data associating the disease with other (other than the intestines) organs. There are plenty of data associating the disease with inflammation of the small intestine.
Gastrin is produced in the pyloric antrum of the stomach, the duodenum, and the pancreas. Obviously those are all inflamed (as a result of MC). Your inflammation is so widespread that it makes me wonder if your diet could possibly be somehow cross-contaminated with traces of gluten. An EnteroLab stool test could answer that question. The longer we react, the higher our antibody levels climb. Gluten (anti-gliadin) antibodies have a 120-day half-life, so it can take years for the level to completely decay back to a normal level if the level was initially very high before the GF diet was adopted. Even so, 3 years into the diet, a test at this point would show a significantly-elevated antibody level if your diet regularly contains small traces of gluten. (Again, been there, done that — I have the most common celiac gene.) Without cross-contamination, at this point your test (if you ordered a stool test) should show a normal, or only slightly elevated result.
FWIW, my colon, cecum, and part of my terminal ileum are also resting peacefully in a landfill somewhere. I've had an ileostomy for over 6 years now, and a colostomy for over 4 years prior to that. And contrary to what the medical literature claims, I can personally guarantee that an ileostomy does not cure MC, nor does it prevent an MC flare if I accidentally ingest one of my food sensitivities. There have been a lot of corrupt medical data published over the years regarding the disease. We also have another member whose ileostomy failed to resolve her MC symptoms. Her doctors insisted that the procedure would cure her disease, based on that corrupt medical research. The last we heard from her, she was contemplating having the procedure reversed, since it didn't help at all.
Unfortunately the blood test used for magnesium will always show a normal result unless the body's magnesium reserves (in muscle tissue) is almost completely depleted. Because magnesium is such a critical electrolyte, if the diet is insufficient in magnesium, the system will pull magnesium from muscle tissue in order to maintain serum levels in the normal range. With malabsorption issues, we slowly run out of magnesium reserves. Many medications, especially antibiotics, severely deplete magnesium reserves. I had an acute magnesium deficiency crisis last spring, following an antibiotic treatment. It was so bad that I went to the ER to get checked out. Since I didn't take a magnesium supplement that morning because I felt so rough, the blood test at the ER actually showed a magnesium deficiency that day. But guess what? Both docs who examined me advised me that my test results were all fine and there was nothing wrong with me. 2 days later, still feeling rough, I logged onto my account at the hospital and checked my results. The magnesium result was even flagged.
The deficiency also caused my creatinin to be out of range and my GFR was way low. I suppose they just attributed those results to old age. Doctors virtually never catch a magnesium deficiency because the test result is almost always normal (despite a deficiency) and even when it is not normal, they don't consider it to be important.
I was already taking almost 300 mg of magnesium daily, but after I saw that result I immediately doubled the dose (scattered throughout the day) and the next day I was much better. In 3 days I was fine. And so was my creatinin level. The point is, a chronic magnesium deficiency is very common, especially with MC, and it can play havoc with the functioning of many organs/systems.
Tex
Based on the accumulated experience of the members of this discussion forum, gallbladder issues are very common with MC and so is pancreatitis. Those issues virtually always resolve on their own after the intestinal inflammation is controlled. In some cases MC can inflame almost any organ in the body, but particularly any organ in the digestive system. We are also at increased risk of various other issues. For example according to an informal poll, we are approximately 7 times as likely to have thyroid problems, compared with someone in the general population.
But precious little research is dedicated to the disease itself, let alone satellite issues, so I'm not aware of any formal research data associating the disease with other (other than the intestines) organs. There are plenty of data associating the disease with inflammation of the small intestine.
Gastrin is produced in the pyloric antrum of the stomach, the duodenum, and the pancreas. Obviously those are all inflamed (as a result of MC). Your inflammation is so widespread that it makes me wonder if your diet could possibly be somehow cross-contaminated with traces of gluten. An EnteroLab stool test could answer that question. The longer we react, the higher our antibody levels climb. Gluten (anti-gliadin) antibodies have a 120-day half-life, so it can take years for the level to completely decay back to a normal level if the level was initially very high before the GF diet was adopted. Even so, 3 years into the diet, a test at this point would show a significantly-elevated antibody level if your diet regularly contains small traces of gluten. (Again, been there, done that — I have the most common celiac gene.) Without cross-contamination, at this point your test (if you ordered a stool test) should show a normal, or only slightly elevated result.
FWIW, my colon, cecum, and part of my terminal ileum are also resting peacefully in a landfill somewhere. I've had an ileostomy for over 6 years now, and a colostomy for over 4 years prior to that. And contrary to what the medical literature claims, I can personally guarantee that an ileostomy does not cure MC, nor does it prevent an MC flare if I accidentally ingest one of my food sensitivities. There have been a lot of corrupt medical data published over the years regarding the disease. We also have another member whose ileostomy failed to resolve her MC symptoms. Her doctors insisted that the procedure would cure her disease, based on that corrupt medical research. The last we heard from her, she was contemplating having the procedure reversed, since it didn't help at all.
Unfortunately the blood test used for magnesium will always show a normal result unless the body's magnesium reserves (in muscle tissue) is almost completely depleted. Because magnesium is such a critical electrolyte, if the diet is insufficient in magnesium, the system will pull magnesium from muscle tissue in order to maintain serum levels in the normal range. With malabsorption issues, we slowly run out of magnesium reserves. Many medications, especially antibiotics, severely deplete magnesium reserves. I had an acute magnesium deficiency crisis last spring, following an antibiotic treatment. It was so bad that I went to the ER to get checked out. Since I didn't take a magnesium supplement that morning because I felt so rough, the blood test at the ER actually showed a magnesium deficiency that day. But guess what? Both docs who examined me advised me that my test results were all fine and there was nothing wrong with me. 2 days later, still feeling rough, I logged onto my account at the hospital and checked my results. The magnesium result was even flagged.
The deficiency also caused my creatinin to be out of range and my GFR was way low. I suppose they just attributed those results to old age. Doctors virtually never catch a magnesium deficiency because the test result is almost always normal (despite a deficiency) and even when it is not normal, they don't consider it to be important.
I was already taking almost 300 mg of magnesium daily, but after I saw that result I immediately doubled the dose (scattered throughout the day) and the next day I was much better. In 3 days I was fine. And so was my creatinin level. The point is, a chronic magnesium deficiency is very common, especially with MC, and it can play havoc with the functioning of many organs/systems.
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.
Allie - Enterolab is what many of us here use to determine our food sensitivities. It is the only lab that uses stool testing rather than blood testing, which is a much more sensitive test. They test for the big 4 sensitivities, gluten, dairy,, soy and eggs as well as a 11 different food, I believe. You can find them here:
https://www.enterolab.com/default.aspx
Most doctors do not know about them and are not interested. If you can get your doctor to order the tests it is possible that insurance will pay for them. Most of us have ordered them ourselves and paid for them out of pocket. I consider this the best money I have ever spent on health care. It is always possible to use a strict elimination diet to determine sensitivities. This just jump starts the process, making it much easier.
Jean
https://www.enterolab.com/default.aspx
Most doctors do not know about them and are not interested. If you can get your doctor to order the tests it is possible that insurance will pay for them. Most of us have ordered them ourselves and paid for them out of pocket. I consider this the best money I have ever spent on health care. It is always possible to use a strict elimination diet to determine sensitivities. This just jump starts the process, making it much easier.
Jean
Tex,
Thank you so much!
Having worked in medicine myself, and now working with Docs my own health, I am wondering what your experience has taught you about communication about these tests and the results when they say normal and we think they indicate something more?
You mentioned that magnesium results may show as normal but in fact not be. Mine were tested daily in the hospital in December - normal. Thyroid - normal. Other stuff was not. Hematocrit, hemoglobin, phosphorus, BUN, etc etc and I was treated. Several tests on blood and stool. Several CT scans - some stuff not normal like kidney stones (thanks for explaining) and other non related stuff (need for hysterectomy), but nothing definitive about why I can't eat and can't gain weight. I have EGDs regularly because of the abnormal results and my sxs and now they're saying I need regular colonoscopies. I have a good relationship with my docs and they saw me go from super healthy to not. They were deeply concerned.
However, I heard maybe you're stressed, maybe you're upset over something. I am in psychology and a practitioner of mindfulness. I practice meditation daily and have done so for 23 yrs. I teach it to my patients. When they saw the abnormalities on the CT scans and the shape my appendix was in I did feel better that they found out part of the issue. My husband and friends were so supportive and helpful in that they told the docs she's the most peaceful person you'll ever meet. Stress cannot be it. Despite the challenges she used mindfulness to do bodybuilding. How many 40 something's do you know who did that? They listened.
I won't accept subpar answers and we have to work collaboratively as a team to get where we need to be. They only know the tools they are used to using. It has been frustrating at times. I think having CD has helped because that autoimmune dx carries weight. Having the heart condition and other dx helps since they can't let things go, not that they would. But time is of the essence. I am tired. I do not want a PEG. I have major surgery in a month.
What do I need to show them when a test result is OK they are used to seeing to give them an alternative perspective? What meds do I need? Thanks so much!
Thank you so much!
Having worked in medicine myself, and now working with Docs my own health, I am wondering what your experience has taught you about communication about these tests and the results when they say normal and we think they indicate something more?
You mentioned that magnesium results may show as normal but in fact not be. Mine were tested daily in the hospital in December - normal. Thyroid - normal. Other stuff was not. Hematocrit, hemoglobin, phosphorus, BUN, etc etc and I was treated. Several tests on blood and stool. Several CT scans - some stuff not normal like kidney stones (thanks for explaining) and other non related stuff (need for hysterectomy), but nothing definitive about why I can't eat and can't gain weight. I have EGDs regularly because of the abnormal results and my sxs and now they're saying I need regular colonoscopies. I have a good relationship with my docs and they saw me go from super healthy to not. They were deeply concerned.
However, I heard maybe you're stressed, maybe you're upset over something. I am in psychology and a practitioner of mindfulness. I practice meditation daily and have done so for 23 yrs. I teach it to my patients. When they saw the abnormalities on the CT scans and the shape my appendix was in I did feel better that they found out part of the issue. My husband and friends were so supportive and helpful in that they told the docs she's the most peaceful person you'll ever meet. Stress cannot be it. Despite the challenges she used mindfulness to do bodybuilding. How many 40 something's do you know who did that? They listened.
I won't accept subpar answers and we have to work collaboratively as a team to get where we need to be. They only know the tools they are used to using. It has been frustrating at times. I think having CD has helped because that autoimmune dx carries weight. Having the heart condition and other dx helps since they can't let things go, not that they would. But time is of the essence. I am tired. I do not want a PEG. I have major surgery in a month.
What do I need to show them when a test result is OK they are used to seeing to give them an alternative perspective? What meds do I need? Thanks so much!
Allie
Jean,
Thank you! I'm going to check it out. My doctor will order it if I ask. They do alternative medicine where I'm at too so it shouldn't be an issue.
How was this helpful for you? How long did it take to see results?
I follow a strict GF diet and have for over 3 yrs so that's no problem. When you do weight lifting you have to follow strict protein to carb to fat eating plans so I'm used to that too. I'd be interested in what worked for you.
Thank you! I'm going to check it out. My doctor will order it if I ask. They do alternative medicine where I'm at too so it shouldn't be an issue.
How was this helpful for you? How long did it take to see results?
I follow a strict GF diet and have for over 3 yrs so that's no problem. When you do weight lifting you have to follow strict protein to carb to fat eating plans so I'm used to that too. I'd be interested in what worked for you.
Allie
Allie,
The enterolab tests showed that I was sensitive to gluten, dairy, soy and eggs as well as chicken beef and a few other foods. I eliminated them all from my diet. I still don't eat any of these foods except for very occasionally eating beef. In fact for about 2 weeks I ate only ground lamb and then added in a few other foods but stuck wth mostly ground lamb and kale chips for quite some time. This was 4 years ago. I had fairly quick results in terms of the most severe symptoms but I would say it took a good 2 years before I felt "healed" and in remission. For me, at the time, the worst problems seemed to be caused by a histamine reaction, meaning within 10-20 minutes of eating I was racing to the bathroom and it would go on seemingly forever. I needed 6 Immodium to stop it. Along with eliminating foods I also kept fiber to a minimum, meaning very few vegetables and only well-cooked. Only within the past year have I added salads back in. I stick to a low carb paleo diet now. I am very sensitive to carbohydrates and by staying very low carb I prevent the development of type 2 diabetes which is prevalent in my family and I don't gain too much weight. In this respect our problems sound very different. Still it is a good idea to keep sugar and processed foods to a minimum, sugar because it exacerbates symptoms and processed foods beause they usually have so many ingredients it's hard to tell what you may be reacting to plus I believe eating real foods is the healthiest way to go for everyone, whether or not they are sick.
Jean
The enterolab tests showed that I was sensitive to gluten, dairy, soy and eggs as well as chicken beef and a few other foods. I eliminated them all from my diet. I still don't eat any of these foods except for very occasionally eating beef. In fact for about 2 weeks I ate only ground lamb and then added in a few other foods but stuck wth mostly ground lamb and kale chips for quite some time. This was 4 years ago. I had fairly quick results in terms of the most severe symptoms but I would say it took a good 2 years before I felt "healed" and in remission. For me, at the time, the worst problems seemed to be caused by a histamine reaction, meaning within 10-20 minutes of eating I was racing to the bathroom and it would go on seemingly forever. I needed 6 Immodium to stop it. Along with eliminating foods I also kept fiber to a minimum, meaning very few vegetables and only well-cooked. Only within the past year have I added salads back in. I stick to a low carb paleo diet now. I am very sensitive to carbohydrates and by staying very low carb I prevent the development of type 2 diabetes which is prevalent in my family and I don't gain too much weight. In this respect our problems sound very different. Still it is a good idea to keep sugar and processed foods to a minimum, sugar because it exacerbates symptoms and processed foods beause they usually have so many ingredients it's hard to tell what you may be reacting to plus I believe eating real foods is the healthiest way to go for everyone, whether or not they are sick.
Jean
Thank you Jean! Very limited diet for you. Wow!
I've mostly eaten whole foods for the past 5 years. I followed clean eating (you can Google if you're interested). However, I definitely eat casein protein, eggs, dairy, veggies. I may find I need to cut that. I have a registered dietitian at work so she'll be a great resource.
At my worst, when I drank the contrast for the CT scan I barely made it to the bathroom 5 minutes later! That was with nothing in my system. Water did it at times. I seriously ate next to nothing for about 4 weeks with no relief. Maybe you're correct in that I need more time to heal. Mine is horrific nausea as well. I have to do mindful breathing to not be ill.
My challenge is gaining weight being prediabetic. Right now they want me to eat ANYTHING that makes me gain weight. Does Enterolab tell you if sugar is bad? I have to be careful though at least in my mind. I don't want to bring on diabetes... though the dietician says not to worry about it. So I won't. However if it is MC it sounds as if you guys are saying sugar is activating not because of diabetes but for the disease process?
And I am allergic to gluten so not just sensitive. That stuff does me in so bad! I did have a skin test for food allergies a year or so ago. Nothing came up. Does that count for anything?
I've mostly eaten whole foods for the past 5 years. I followed clean eating (you can Google if you're interested). However, I definitely eat casein protein, eggs, dairy, veggies. I may find I need to cut that. I have a registered dietitian at work so she'll be a great resource.
At my worst, when I drank the contrast for the CT scan I barely made it to the bathroom 5 minutes later! That was with nothing in my system. Water did it at times. I seriously ate next to nothing for about 4 weeks with no relief. Maybe you're correct in that I need more time to heal. Mine is horrific nausea as well. I have to do mindful breathing to not be ill.
My challenge is gaining weight being prediabetic. Right now they want me to eat ANYTHING that makes me gain weight. Does Enterolab tell you if sugar is bad? I have to be careful though at least in my mind. I don't want to bring on diabetes... though the dietician says not to worry about it. So I won't. However if it is MC it sounds as if you guys are saying sugar is activating not because of diabetes but for the disease process?
And I am allergic to gluten so not just sensitive. That stuff does me in so bad! I did have a skin test for food allergies a year or so ago. Nothing came up. Does that count for anything?
Allie
The way I see it Allie anything is better than being sick all the time. I'm used to the way I eat now and I don't feel deprived. Instead I feel grateful to have found a way to get my life back. I have spent a great part of my life nauseous. It's an awful way to live. I no longer am dealing with daily nausea. I know that deep breathing thing to keep from vomiting. I used to recite a mantra to myself "don't throw up" "don't throw up" over and over again. That's no way to have to live.Allie wrote:Thank you Jean! Very limited diet for you. Wow!
And I am allergic to gluten so not just sensitive. That stuff does me in so bad! I did have a skin test for food allergies a year or so ago. Nothing came up. Does that count for anything?
Lot's of people here who are considered "sensitive" to gluten still have pretty severe reactions that do them in. I haven't eaten any in 4 years. I don't want to find out how I would react. The skin tests are not sensitive enough to detect all your food sensitivities. I'll leave it to Tex to explain the science behind it.
I hope you find the solution. So many of us here have done just that. The people who are most successful are the ones who are scrupulous about their diets. It really does work .
Jean