New - Ok to have joined youir community? Questions/Guidance

[Allie]

Jean, that mantra is so familiar! :)

When I was told I had Celiac Disease it explained so much. I have other autoimmune things as well. I feel for all those who can't eat without getting sick here whatever the reasons.

I remember sitting in the ER waiting to be admitting for surgery and watching a woman eating a pack of crackers from a vending machine and drinking a pop and thinking how much people take eating and drinking daily for granted. I would have done anything just to eat and drink anything at that point and not get sick.

I'm grateful to have a good team of doctors. I hope they are not dismissive of the things I report from the wisdom and experience shared on this site if I do have MC. I look forward to more info from Tex (and others if they have info to share). :)

[Gabes-Apg]

Allie
welcome to the group

My challenge is gaining weight being prediabetic.

Healthy weight gain will happen when your body and cells are 'happy' when major deficiencies are fixed, inflammation levels are reduced, adrenals and immune system are happy (via reduced inflammation and the right nutrients)
until then, the body will struggle to gain weight no matter what you eat.

I too follow a limited low amount of ingredients eating plan - i have my safe ingredients and life with minimal symptoms is worth it.

Does Enterolab tell you if sugar is bad?

No, but all the published articles about achieving gut health tell you that sugar is bad, it makes sibo worse, candida worse, makes food ferment and impacts healthy digestion process,

Health, Wellness for ALL your body is reliant on a healthy gut.
With the right eating plan, low inflammation in the body, fixing nutrient deficiencies you can resolve these issues.

There are lots of good posts and articles on this forum that will help you understand what we are suggesting.
Use the search function to look up key words.

The research articles shared here and discussions based on the experience of 2000 people is a good resource.
Mainstream medicine and other practitioners like dieticians, nutritionists etc have their approach and not always is it in line with recent research and what we have learnt here about healing the gut.

Good luck for your healing journey.

[Allie]

Thank you Gabes! I'm appreciative of your time and experience. Luckily the hospital I go to has an integrative medicine section with alternative medicine such as biofeedback and acupuncture. I'm hoping this means they are open to the ideas presented here.

I'm a scientist at heart so I can't totally dismiss the science myself. However, qualitative research is also important. I've been browsing this site and people here have been brave in addressing their challenges. Their experiences are important in fitting the puzzle pieces together for those of us who come along next. :)

[Gabes-Apg]

Allie
i have tried quite a few diagnositic tools and various treatments during my wellness journey

acupuncture is fantastic for reducing inflammation and balancing the digestion organs.
I did bio impedance diagnostics and treatment. Interestingly we struggled to get the inflammation levels down and it did make some indicators of issues but at the time they did not make sense.
Down the track when I did further testing, my Methylation profile and pyrolle diagnosis - the indicators from the bioimpedence made sense.

I have done a wide variety of tests and lots of research on cell health and healing. Getting wrapped up in finding scientific answers was not the be all end all.
Sticking the healing low inflammation eating plan, and fixing key nutritional issues like Vit D3, magnesium, B Groups have provided the most benefit.

[tex]

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?

When my symptoms got out of hand (back in the spring of 2000), I went through all the tests, including CT scans, barium x-rays, blood tests, colonoscopy, etc., and at the end the GI specialist advised me that there was nothing wrong with me. Since I was mighty thin at the time, and sick as a dog, I asked him what he recommended if the symptoms continued. He suggested seeing a good psychiatrist. I never went back, of course. At the time, I didn't know that he failed to take biopsies, nor did I realize that he should have, but that's when I learned to search the medical journals for information on digestive system issues. I eventually figured out that my symptoms were due to my diet, and I decided that I must be a celiac (which I may be, because as far as I can tell, I was never tested).

Of course eliminating gluten from my diet didn't resolve my symptoms, but apparently it did allow enough gut healing that by keeping a food/reaction journal as I experimented with avoiding and reintroducing various other foods, I could see trends. But I kept making the mistake of adding suspect foods back into my diet as I experimented with avoiding other foods. Eventually (after a year and a half of trial and error testing) it dawned on me that I needed to bite the bullet and cut out every one of the suspect foods. After I did that I was in remission within a couple of weeks.

5 years after the gastroenterologist told me that there was nothing wrong with me, I had to have emergency surgery for a blockage in my sigmoid colon, which left me with a colostomy. So after I recovered enough to get around, I went to the records department of the hospital and requested a copy of my endoscopy (colonoscopy) report, and lo and behold, there it was, in black and white, a description of a senosis in my sigmoid colon that the gastroenterologist had never bothered to tell me about. And of course, there was also confirmation that he didn't bother to take biopsies during the procedure (IOW, no biopsy samples were noted), and of course there was no pathology report, since there were no biopsy samples.

That's when I first learned about communications issues — physicians don't always inform patients about the details of their tests or procedures. We have more than a few members here who have been told by their GI specialist that there was nothing wrong with them, or that they had IBS. Some docs apparently still don't know the difference. But when the members ordered a copy of their pathology report, the markers of MC were clearly there. In some cases the GI specialist just ignored the pathologist's diagnosis, and in a few cases the pathologist apparently didn't recognize the markers of the disease. That happens much less frequently these days.

Incidentally, most GI specialists will tell you that the inflammation associated with MC is not visible on the monitor during a colonoscopy exam. That's why it's called "microscopic" colitis. But when I looked at the monitor during the procedure I could see slightly erythematous patches randomly scattered on the normal light pink background of the musocal lining of my colon. When I asked the doc what they were, he just shrugged and commented that they might be previous sites of an infection. A few years later when I read Dr. Kenneth Fine's description of the same thing, I knew that I had MC. To my knowledge he was the first gastroenterologist to ever point out that the inflammation associated with MC was indeed visible, and by taking biopsy samples from those sites, the chances of missing a diagnosis of MC are virtually eliminated.

So yep, I'm another here who has never had an official diagnosis of MC. But like others here, I have never found the lack of an official diagnosis to be a problem. And I have never had a doctor to question my claim that I have the disease, nor that I have the food sensitivities that I list on my medical information forms.

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.

Those tests were accurate in the sense that your magnesium reserves apparently were not completely depleted at the time. As long as there is still enough magnesium available in muscle cells to keep the blood level of magnesium in the normal range, the test results will be normal. The problem is that the test provides no information on how much magnesium remains in storage in the muscles. There is a tissue test to determine that, but I have never been able to convince a physician to order it. They have a blind faith in the blood tests.

One clue is that when I had the acute magnesium deficiency "crisis" last spring, both my hemoglobin (12.4 g/dL — normal range 14.0 - 18.0 g/dL) and hematocrit (36.5 % — normal range 42.0 - 52.0 %) were significantly below range. And that information was totally ignored by the ER doctors, who informed me that all my test results were normal.

I don't understand why you would need regular colonoscopies unless you have a huge risk of CRC. All they need to do is diagnose MC a single time and they're done. GI specialists frequently request repeat colonoscopies, especially when a patient is refractive to treatment, because they believe that they will actually find something that they missed. But that never happens. They simply don't know how to treat MC in order to actually resolve the inflammation. They always want to suppress it with drugs, and then act surprised when the patient relapses after the treatment is ended. The inflammation has to be prevented from being regenerated with each meal, by making the proper diet changes. By my definition, celiac disease is a symptom of gluten sensitivity. MC is simply an advanced/mature symptom of gluten sensitivity.

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.

There is an entire chapter in my book discussing all the reasons why I consider chronic stress to be a prerequisite to the development of MC, supported by published medical research references. But chronic stress is not limited to emotional stress. It can be in various forms, including physical, medical (including infections, drugs, etc.), and chemical stress, and it can be a combination of different types of stress. "Chronic" is the keyword here.

What do I need to show them when a test result is OK they are used to seeing to give them an alternative perspective?

There is a reason for everything. I doubt that you will have much success trying to convince most physicians that their tests are not perfect. Virtually all tests are not perfect, but those tests are all that physicians have on which to base their diagnoses these days. They no longer base diagnoses on clinical symptoms, so those tests are their bread and butter and they have no choice but to trust them implicitly (because they feel that they don't have any other options.

Low red cell counts are definitely associated with magnesium deficiency. But of course there can be other reasons. When they remain below range over the long term, that suggests a chronic magnesium deficiency, but I'm not aware of any way to prove it, though there is at least some old research related to diabetes patients.

What meds do I need?

You can suppress the symptoms with budesonide, but only the proper diet changes can stop the redevelopment of inflammation.

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?

Those skin tests are all designed to detect classic allergies. Both skin tests and blood tests are based on IgE antibodies and IgG antibodies, because those are considered to be the classic markers of allergic reactions. But those antibodies have nothing to do with the inflammation that develops in the gut as a result of exposure to certain food antigens.

The reactions that we experience from exposure to food sensitivities that are associated with the inflammation that causes MC are based on IgA antibodies produced in the intestines that result in the proliferation of the intraepithelial infiltration of lymphocytes (used as a diagnostic marker of LC). IgA antibodies can be found in the intestinal mucosa and the lamina propria by means of biopsy samples. But it's much simpler (and far less invasive) to use stool samples for testing, and this is what EnteroLab does.

I hope that some of this is helpful.

Tex

[Blueberry]

Along with diet ideas and supplements mentioned, I didn't see low dose naltrexone (LDN) brought up so thought to quickly mention. It might be something worth brining up with your doctor about a prescription for. LDN seems to help a good many with MC and other GI conditions. One thread on LDN can be seen here ~

"An update on my LDN therapy: A Miracle? An unequivocal YES!"

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=20020

I was reading a book on LDN recently. A mention was made in it about how it helped some that took it to regain weight.

[Allie]

Tex,
So sad to hear about your experience! I can't believe they didn't take biopsies. I can believe they failed to tell you about test results. I've ran into that too. It sounds like you went thru a long and arduous journey. Your commitment to figuring out what was happening to yourself is to be admired and I'm glad you found answers and are willing to share them.

In my case, I know part of the repeat testing is the abnormal biopsy results they already have and we have discussed this. I also have a significant family hx for cancer of the GI tract. They are watching that. I see your point however about relapse of sxs. I will bring this up. In this case, it makes sense what you are saying for sure. I likely would experience what you describe. All of these things need to be kept in mind. I do have some confirmation of dx. Some are still coming in. We'll see.

I definitely need to do the elimination diet. I need to determine if they want stool testing (i.e. Enterolab) or another route to confirm which foods. Thank you all for the guidance there! I likely will need a med. I looked up meds and you may be right about the budesonide but it will interact with a med I am on for my heart/BP so they will have to come up with an alternative. I'm open to their suggestions. Given goals we have, I have to gain weight before surgery and my main goal is to avoid the PEG.

There's a lot that needs to be done in a short period of time. I think what I'm reading is that the TX protocol being followed is not based on adequate research for doctors either. We're all searching in the dark to some extent. More research is needed with longitudinal studies and outcomes. Thanks again Tex! Your work in this area is invaluable!

[Allie]

Blueberry,
Thank you! I will look into this! Thank you very much!

[tex]

So sad to hear about your experience! I can't believe they didn't take biopsies.

Remember that this was almost 16 years ago. Back then MC was considered to be a rare disease and it was viewed as a disease of middle-aged women. Neither you nor I were likely to have been biopsied back then. Since the disease can only be diagnosed by viewing biopsy samples under a microscope, those beliefs were self-fulfilling prophecies for many years. As long as gastroenterologists only looked for it in middle-aged women, then it could only be found in middle-aged women.

Incidentally, our youngest member (actually her mother joined on her behalf) was only two and a half years of age when she was diagnosed. Her doctors insisted that she should be treated with budesonide, but fortunately her mother listened to us and changed her diet instead, and within a few months she was in remission. That was over 7 years ago. She should be 10 about now. Here's a link to her story, if you're interested in the details (it's 7 pages long). Later posts where her mother occasionally posted about her continuing remission can be located by searching the archives:

My 2 Year Old was just diagnosed with LC :(

You can find a summary of the latest guidelines published (in mid-December, 2015) by the American Gastroenterological Association Institute for the medical management of microscopic colitis at the following link (scroll down to the last news item on that page). Links to the original article are also available there.

http://www.microscopiccolitisfoundation ... s-new.html

You're most welcome, and the best of luck to you in your journey back to health. Please keep us posted on your progress, and never hesitate to ask any questions that might come to mind.

Tex

[Allie]

Tex,
Thanks for the links. My friend had a colonoscopy a month ago and they did no bx either. She is 65yo. Said everything looked good. If you're in there and someone is having issues, why would you not at least take a couple of bxs? She was so irritated after going through the clean out. Like you said, 16 years ago, it could have made sense, but in this day and age, it doesn't.

I'm calling my GI today about Entero Labs and their testing. I will start the elimination diet if he agrees this week. I see him next week for the bx results and a plan for tx. We'll discuss the upcoming surgery (hysterectomy) and go from there.

Tex, any suggestions as far as the elimination diet - what to start with? Everything? LOL! What does that mean? I already do no gluten obviously. What else? Thanks so much! P. S. I read the link on the home page and it is helpful. I cannot eat chicken right now. It is too painful. If I tell my doctor I am eating potatoes, bananas, and tea he is going to kill me because I am supposed to be trying to gain weight and that will be a fast track to a PEG. Also, Aren't potatoes on the nightshade thingy (technical term I know ha ha)?

[tex]

Allie,

Yes, there is absolutely no reason not to take biopsies while doing a colonoscopy for a patient who presents with either intractable diarrhea or chronic constipation. I would have to chalk that mistake up to either laziness or incompetence on the part of the gastroentrologist who cheated that patient out of an almost certain MC diagnosis. May the bird of paradise fly up his nose.

A surprising number of us are sensitive to chicken. So far no one seems to be sensitive to turkey, however, and lamb is another safe choice, as is venison, duck, goose, quail, rabbit, pheaseant, and virtually all other "wild" meats, except for bison — virtually all bison carry domestic cattle DNA these days due to cross-breeding. We also have to minimize fiber and sugar while recovering, and all artificial sweeteners, and things like citric acid.

Nightshades seem to be a problem for very few of us. If your rheumatoid factor (RF) is positive, it would probably be beneficial to avoid nightshades. Many of us who are either sensitive to potatoes or don't want to take a chance on them while recovering, substitute sweet potatoes. "Colored" potatoes, such as yellow or red, are significantly easier to digest than Russets, because they predominantly contain a different type of starch that is water-soluble and therefore much easier to digest. You can download some diet guidelines to help with designing a safe and effective recovery diet at the following link. A PDF download of the latest medical treatment guidelines for MC is available there also.

http://www.microscopiccolitisfoundation ... loads.html

It's not easy to gain weight on an elimination or recovery diet. But the only way we will ever be able to gain weight (safely) is by restoring our ability to digest food, and to do that, the inflammation in our intestines must be resolved so that we will be able to resume producing the enzymes we need, and the damage to the mucosal lining of our digestive system must heal so that we can more effectively absorb nutrients from your food. That's not going to happen overnight, unfortunately, but when digestion is corrupted, nothing else in the body can be expected to work correctly. Our guts are our engine, and we don't run very smoothly when it's misfiring on half it's cylinders.

And as further evidence that your doctors do not understand MC, note that a feeding tube will provide only marginal benefits in your situation. That technique will overcome the digestion issues, but it's nutritional benefits will still be limited by your malabsorption problem. If your malabsorption issues happen to be major, then you might only be able to absorb a relatively small portion of it. It would surely boost your nutrient intake, but probably not nearly as much as they would expect.

Tex

[Patricia]

Hi Allie,

I couldn't agree more with what has been said so far. I lost 26 lbs within a few months due to diarrhea and malabsorption. I was afraid to do the elimination diet for fear of losing even more weight. But I actually only stopped losing weight once I was on the elimination diet (I only ate lamb, potatoes with olive oil, and bananas for weeks). I was finally able to digest and absorb the nutrients in my food. Before that, I ate as much as I could but nothing was absorbed. It just went straight through me.

The Enterolab results, the advice of all the wonderful people on this board, and Tex's book have helped me the most!

My safe foods now are rice, potatoes, lamb, cod, mahi mahi, tuna, scallops, shrimps, bananas, butternut squash, kale. I eat lots of seafood now but I only buy wild caught seafood. I do not do well with farmed seafood (I think they feed them soy and I have terrible reactions to soy). I also do well with avocados and olives (but the olives only if they are in a can in water, I react to other olives, presumably because they contain other hidden ingredients). I pour a very pure olive oil that I special order over everything I eat in order to maintain my weight. I can't have the olive oil from the supermarket because most of it contains soybean oil (it is not declared, though; that's the olive oil scandal/fraud). A lot of people on this board use coconut oil, you might want to try that. In the meantime I also do fine with plantain chips (only ingredients are plantains and palm oil). But they are fried and fried foods might be too difficult to digest for you right now. I don't do well with sugar, so the only way for me to add extra calories is fat.

Good luck with everything!

Love, Patricia

[Allie]

Thank you guys so much!

It looks like some of the original bxs may be colitis. The recent ones are inconclusive because the path report is subpar per review by staff and my own review.

We are also looking into chronic pancreatitis now because of some other indicators, a CT scan in the past, and sxs. It never ends...

[tex]

Allie,

Pancreatitis is commonly associated with MC. Many of us have had that problem. When we resolve the inflammation in our intestines, the pancreatitis resolves, also. And conversely, until the inflammation in your intestines is resolved, it's unlikely that your pancreatitis can be successfully controlled (other than possibly temporarily).

You might want to request that your biopsy samples be sent to another institution for a second pathology opinion. That option should be available to you.

Tex

[Allie]

Tex,
Thank you! I've been scheduled for 2 specialized pancreas tests. I'll let you know how they turn out. I've lost more weight so when I see the GI Monday the battle over the PEG will begin anew. I do like him and he is following an algorithm for dx of refractory celiac from what I can see. We'll revisit the colitis again Monday too. Thank you again for the information and guidance. I'll bring up the points you mentioned.