Hi everybody—long intro and newbie questions

[TM]

Hello everyone,

Before I jump in and bombard you with questions I wanted to thank all of you for the wealth of information and support you’ve so generously—and unknowingly—shared with me, while I’ve been lurking in the shadows for the last month or so.

I apologize for my tendency to be verbose and now rereading this, see its grown way longer than even I thought possible. So you might just want to skip ahead to the questions at the bottom.

Here’s my MC story:

I was diagnosed with CC in May 2016 but “knew” I had it after reading a testimonial in a 12/15, newsletter from my G/E clinic. It was from a patient with CC describing the low FODMAP diet that had successfully eliminated her symptoms after steroids had failed to help her. Knowing I was unlikely to ever agree to the meds, I consulted the clinic nutritionist, who of course called it “IBS”, recommended a colonoscopy and gave me additional info and pointers re: avoiding FODMAPS. The diet helped quite a bit at first, and I kept thinking I’d improve more quickly if only I was more compliant. And I did improve markedly, for brief intermittent periods. So I kept at it, for far too long, until I discovered your forum last month—thank goodness!

Apparently this year-long detour encouraged significant additional inflammation and damage. Unfortunately I failed to appreciate the autoimmune nature of CC, its connection with magnesium or with my previously diagnosed issues: Raynaud’s, insulin resistance, Hashimoto’s, early osteoporosis, chondrocalcinosis, joint+muscle pains/cramps/
weakness, esophageal dysmotility, hypokalemia, hypomagnesemia,
hypophosphatasemia (low ALP), eczema, CPPD (pseudogout), 2ndary hyperparathyroidism, and in 7/15 breast cancer. (Or even earlier: childhood anemia, migraines, LPR and localized vitiligo along with lifelong intense foot and leg cramps). In hindsight the connection between all of these seems obvious, particularly since I’ve been aware of and have been trying to understand the implications of my mineral/electrolyte deficiencies since 2010. It looks like a long list, but most concerns have been relatively mild (or brief) and until the cancer diagnosis, I never looked or was considered to be seriously ill.

My last radiation treatment was in Nov 2015, and that very morning marked the onset of the unmistakable symptoms of CC. Not long after that, the FODMAP testimonial appeared in my e-mail, but I delayed the inevitable colonoscopy because I needed an MD break after the long, wearying daily X-Ray routine. I was due for another colonoscopy in 11/16 and hoped to put it off until then. This was to be my 3rd since 2002, but of course they never checked for MC on the first 2, despite similar symptoms which had been severe enough to suspect food poisoning and prompt stool testing four times. I finally agreed to a colonoscopy last May, and along with my Dx received the usual MD recommendation for budesonide along with the usual misinformation minimizing the implications of CC and suggesting the possibility of spontaneous remission. A high fiber diet was recommended if I refused the meds! I guess it was easier at the time to buy into this explanation than to acknowledge and investigate the more serious, auto-immune nature of the problem.

Since my questions today regard the eating plan, and with further apologies for this interminable intro, here’s my dietary background:

I guess you could say I’ve been somewhat diet-obsessed for about 4 decades (now age 67). For the most part I stopped eating red meat in my late 20’s, with occasional exceptions involving family, social, or work gatherings. I continued eating dairy, eggs, chicken and fish and increased my soy and dairy consumption. In 12/05 (age 56) I tested positive (on a blood test) for IgG antibodies to casein and eggs, (but not soy or wheat) so eliminated all dairy and eggs. I’d already adopted an obsessively low-carb diet to combat elevated blood sugar—no more breads, pasta, cookies or pastries, limited fruit, very minimal brown rice and potatoes, occasional coconut sorbet with tastes of homemade G/F, D/F desserts and dark chocolate. Also minimal packaged food, and when eating out mostly AsIan veggie dishes or sushi. So, with a few brief interruptions I’ve been virtually dairy and egg free for over 10 years, and by default also “virtually” gluten free. I realize though that “virtually” doesn’t cut it and even as recently as 12/2016 there have been inadvertent or occasional minor tasting transgressions, restaurant sauces w/soy,etc., and until 11/2014 a customary glass of beer with dinner. I did continue eating soy: G/F tamari, edamame, tofu, etc. But since my (adult) step-daughter has celiac disease, (and virtually everyone I know is on some sort of restricted diet), I’ve long been aware of the many hidden sources of gluten, etc., so shop, cook and eat accordingly at home.

So for years my diet consisted almost exclusively of: wild salmon, local (Pacific NW) tuna, tofu, edamame, occasional chicken, loads of veggies, a small amount of fruit—mostly berries—and massive amounts of seeds, nuts and nut butters—on Corn Thins—those great crackers from Australia, and corn tortillas. Oh I almost forgot about the tortilla chips and salsa and guacamole, occasional G/F crackers/snacks, “85% dark chocolate and a bottomless cup of black coffee.

That was until 11/2014 when some unbelievably ill-advised dietary changes (keywords=apple cider vinegar) prompted a total esophageal meltdown. My long-time trusted naturopath had referred me to another ND to interpret the results of my recent EXA Test (magnesium/mineral analysis). But his dietary recommendations resulted in an abrupt worsening of my digestive situation. I felt like I’d literally burned a hole in my esophagus, prompting an upper endoscopy, manometry with the awful tubes down the throat swallowing test (which I failed), followed by 24-hour pH impedance testing. Dx was esophageal hypersensitivity, malfunction and ineffective motility. Recommendation: resume daily PPI’s—originally prescribed in 2002. Over a decade ago I’d successfully weaned myself to just a few per month—most months none—but was assured that an expensive newer one—Dexilant—was better. It helped only minimally, so after a month I worked my way back down using generic Protonix only when desperate. Although burning intensity has decreased somewhat over time, esophageal issues have not materially changed or resolved in over 2 years.

Soon after though, digestive concerns were shifted to the back burner, as breast mass issues surged to the forefront. In 2001 the lump was so minuscule as to be undetectable on mammogram or ultrasound—until 2007, when a biopsy (they still had a hard time locating it, so they installed a titanium pin for future reference) found it was benign. But even with the marker it never again showed up on any annual digital mammograms. It remained barely palpable until 12/14 when suddenly it was huge. Apparently density issues and its location right up against the chest wall made it undetectable on mammogram as late as 12/2014 + 6/24/15, when they finally located it with ultrasound. Because of its size, an excisional biopsy was highly recommended (even by my ND) and done in July 2015, but it was still expected to be benign—an assertion repeated by the surgeon even pending the pathology report, received the next day. Of course it wasn’t benign, so a 2nd surgery was necessary to clear the margins, etc., (which when added, increased its size to a Stage 2). Radiation was delayed for several months due to complications from a surgical hematoma, and an armpit seroma from lymph node removal. Fortunately the nodes were negative and I was classified as low-risk for recurrence—hooray! That meant no chemo—and so far so good.

So after surgery and particularly during radiation I was urged to expand my menu selections and eat breakfast before treatments. I began eating lots of fruit, more carbs, particularly whole grains, potatoes, etc. as well as daily avocados, tomatoes, red peppers, even more high fiber veggies—heavy on the broccoli and cauliflower, and other “newly added” high FODMAP, high histamine foods. Additionally it was chanterelle season here in the NW and we definitely O/D’d on them. And on other other wild mushrooms and shiitakes which we’d been growing for years. I later realized that these along with the bulk of my large veggie/herb garden were mainly harvested in late summer/autumn, coinciding with the timing of most prior stool tests.

So the CC took over in 11/15, and 2 months later I started the low FODMAP diet. As symptoms intermittently improved and worsened I found myself trying to fill up on more and more nuts and (crunchy) peanut butter than ”allowed,” ever-increasing amounts of popcorn—no oil, just salt—along with lots of spinach and other allegedly “safe,” low-FODMAP foods, many of which I now realize were actually abrasively high fiber and/or high histamine. Thanksgiving 2016 dealt the final blow.

So I began Phase 1 late last month, but have as yet been unable to conclusively confirm any foods as safe. I started with increased amounts of of plain roasted chicken, plain grilled salmon and tuna, potatoes, baby carrots, vegan G/F coconut macaroons, black coffee and plain green tea.
(The macaroons are tiny—only 3.5 grams of sugar—(maple syrup) in each.)

After a few days I ditched all supplements but mag, (+oil) D3, and prescription KCL (since 3/2010—other Rx=Synthroid + Tamoxifen), and also got it together to make homemade chicken bone broth. This seemed to make things worse and I became semi-nauseous and started gurgling noisily right after the broth—twice. So I thought I’d give chicken a rest and also substituted white rice for potatoes. That was almost 2 weeks ago and although the WD persisted, the frequency, urgency, pain and cramps diminished and I finally stopped losing weight. I added plain ground turkey almost a week ago, and thought it was okay at first, but had another meltdown yesterday and resorted to a PPI. (1st in ages). So no more turkey for awhile either. This morning I registered my lowest weight—probably since grade school.

So—is there any alternative for bone broth? I’m now wary of poultry (I’ve ordered EnteroLab (A1/C1) + the fat malabsorption panels) but I’d really rather not start eating other meats again, as I think I may have always had a fat malabsorption problem. Is there anything else that even comes close?

Could the chicken/broth/turkey have been falsely implicated by residual inflammation? Is it a mistake to add items before you’re absolutely certain about current ones? And if there’s not much progress do you ditch one food at a time? (Wouldn’t leave much—I’m often very hungry as it is). Alternatively do you just pick a few new foods and start again, or just hold your breath until you get your test results? Oh, I was also wary of the green tea and this morning substituted fennel tea—previously prohibited because of FODMAPs. No problems yet.

Also, about two weeks ago after reading about mast cells here, and in Tex’s book, I began taking antihistamines, as itching had reached epic proportions. I’m using diphenhydramine at night since I also have sleep issues, (not much help there) and noticed skin improvement after just a few days. I’m now virtually itch-free which I find amazing since my dermatologist has prescribed a (spendy) compounded coal tar cream for years.  Of course it never actually worked, so I gave it up long ago. I also started taking 1/2 generic Zantac about a week ago since esophageal issues have also been worsening.

So if it sounds like further investigation of mast cell issues is in order, are there appropriate tests to start with, which hopefully can be ordered by a PCP? I was thinking of seeing Dr.Sandberg-Lewis in Portland after I absorb the costs of and receive the EnteroLab results, since neither is covered by Medicare. I took a brief look at his website, but didn’t see any mast cell info. Does anyone know if that’s on his radar? Or if there’s anyone else in or around Portland who’s knowledgable about mast cells?

(BTW Enterolab has a discount if you order by phone rather than on-line—it was $80 off—$40 off each)—not sure if this is usual, or just a temporary promotion.) I just received the kit and will return it in a day or two.

Sorry about the multitude of questions, but I know you’re the only ones with the answers. Thanks again for the warmth, knowledge and experience you’ve shared. I’ve already learned so much from all of you! And I apologize again for going on and on.

TeriM

[Gabes-Apg]

Welcome TeriM

don't apologise for the long intro, sharing the story of your journey to this point is part of the healing process.

to answer your questions;

bone broth - if you make the bone broth with bones of your safe proteins. lamb bones make good bone broth and lamb settles very well for many here (I think mostly because it is a grass fed livestock. )
re your reaction to turkey - if it was ground turkey with rosemary extract then it most probably had soy in it. maybe try turkey that you ground up your self that you know is free of any flavourings or additives.

depending on how you made the bone broth - and linked to your improvement with antihistamines, the bone broth can be high in histamine.
the way to avoid this is to do short boil of the broth (no more than 3 hours), freeze it into portion sizes, and reheat it or cook with it before consuming.

given your histamine reactions - a good way to treat the root cause of this is to take P5P, the active form of B6.
(I had lifelong allergies and histamine issues and these have disappeared once I resolved the B6 deficiency)

formal confirmation of mast cells is not an easy process via PCP. there are multiple tests used one of which is the staining biopsies from colonscopy. long story short, I would only venture down this path if after 12 months you still have ongoing moderate symptoms. I am confident that once you fine tune your eating plan, resolve deficiencies like Vit D3, Magnesium and P5P (b6) the mast cell / histamine issues will resolve.

I hope this answers most of your questions
glad that you have enjoyed the information and discussions on the site

happy healing

[TM]

Thanks for your warm welcome and response Gabes. I think I’ll try to restrict to fish only for awhile—sure hope that’s not problematic for me. As for the lamb—I’ve never been able to eat it. It just always seemed too fatty and even as a child, just the smell of it being prepared was enough to drive me from the kitchen, (as did butter being browned). For several years I’ve been eating salmon with the skin on, but lately even that seems too fatty.

I’ll check out B6. Last time I was tested my B vitamins and ferritin were right near the top of the normal range, but I’m not certain if B6 was included. That was 4 or 5 months before my situation deteriorated in 11/14, so maybe I should recheck.

I upped my magnesium from 800 to 1200-1400 mg of glycinate at least 3 years ago to control leg cramps. A few months ago I started using the oil and was amazed when it stopped cramps in progress. So I tried decreasing the oral mag, first to 1000 and after a few more days to 800. Unfortunately the cramps soon returned and yesterday even 1200 wasn’t enough. I’ve also upped my D3 from 2000 IU to 4000 IU, but am thinking of increasing it further.

Thanks!

TeriM

[tex]

Hi Teri,

Welcome to our Internet family. You've already had a long and difficult journey. Hopefully we can help to smooth your path to recovery. The FODMAP diet is somewhat helpful in some MC cases, but it's not ideal. We have to design a recovery diet specifically for our own particular needs based on our food sensitivities. The EnteroLab test results will answer a lot of questions and make fine-tuning your diet much easier (and eliminate a lot of guesswork).

Unfortunately if there are any physicians knowledgeable about the association of mast cell issues with MC, who are practicing in the PNW, I'm unaware of who they might be. Currently, all of the GI specialists who are also experts on mast cell issues were trained under the supervision of Dr. Maria Castells at the Brigham and Women's Hospital in Boston. Most of them have not strayed very far from that region, but a few are scattered across the eastern quarter of the country.

As Gabes pointed out, mast cell testing is not well-developed. The only currently available practical test for mast cell/histamine reactions involves testing serum tryptase levels. Those levels peak approximately 2 hours after a mast cell event (mast cell degranulation involving the release of histamine) and then decay. There's no test available for detecting histamine levels, but tryptase enzyme is also released concurrently with histamines and other inflammatory agents, so testing tryptase levels gives a reasonable estimate of the intensity of a mast cell event. But if the blood draw is not made at an optimal time, the test will almost always show normal tryptase levels, so it's not easy to officially detect and diagnose mast cell activation disorder (MCAD).

Many of us here have some degree of MCAD, so we have to limit our intake of high-histamine foods and take antihistamines in order to control the symptoms. Often, after the inflammation has been under control for several months or so, the antihistamines can be stopped and symptoms controlled/prevented by diet alone.

Again welcome aboard, and I hope that some of this is helpful.

Tex

[TM]

Thanks for the encouragement Tex. I'll keep going with the antihistamines, but am somewhat concerned about Zantac since its marketed as an acid reducer. Should I be? Would it be better to take Diphenhydramine at night and Loratadine during the day, or is that an asset? One of each? 1/2 of each?

Also wondering whether its common to require so high a maintenance dose of magnesium: 1200-1400mg (Dr’s Best Glycinate) and for the last few months, liberally applied oil as well. I began with 400 mg citrate in 2010 when potassium was first prescribed, and gradually increased as needed up to +/-1200 mg glycinate in 9/2014 (EXAtest recommended 1200 mg of mag glycinate by Integrative Therapeutics—much spendier but didn’t seem any more effective, so I switched to Dr’s). Even so, I just don’t seem to retain much and during this current flare nightly foot and calf cramps have returned, and even my serum mag tests—ordered regularly by my oncologist— are consistently at or below the bottom of normal range.

Hooray-no gurgles yet today. Last 2 days just salmon, rice, potato, carrots + macaroons. Definitely can live with that menu--hope it lasts--and looking forward to learning more from EnteroLab.

Thanks again!

TeriM

[tex]

Well, Zantac is not a particularly nice medication, but it's about a thousand times safer than taking a PPI if you need to treat acid reflux issues with a medication.

Most members here who use diphenhydramine, use it at night because of the drowsiness issue, and many take a conventional antihistamine each morning. Some do both while working their way past mast cell/histamine problems. The dosage depends on individual needs. Please be aware that diphenhydramine has anticholinergic properties, implying that it has been associated with an increased risk of age-related dementia and Alzheimer's.

If loratidine doesn't seem to help, many here have found that Allegra (fexofenadine) often gives better results.

That's a relatively high dosage for magnesium, but for many (probably most) of us, the official RDA is way inadequate. If I don't take at least 600 mg of magnesium daily, I have certain magnesium deficiency symptoms the very next day. And my diet contains a significant amount of magnesium.

Remember that leg and foot cramps can also be caused by dehydration, which is very common when MC is active. But if your serum magnesium test is low, then you are seriously deficient of magnesium. You apparently are not absorbing magnesium well at all. This can happen because of insulin resistance. Magnesium deficiency causes insulin resistance, and insulin resistance makes it more difficult to absorb magnesium. Because of this, once insulin resistance develops, it can be a self-perpetuating problem. You might find that Dr. Carolyn Dean's ReMag is more effective because it is much more easily absorbed. But because it's a relatively potent product, it's always prudent to begin with a low dose and slowly work up the dose over time.

That's good news that you're doing better today. The key to the shortest recovery time is a simple, bland diet, without any attempts to experiment with adding "new" foods.

You're very welcome,
Tex

[Gabes-Apg]

TM
agree with Tex regarding the magnesium, I would encourage you to use more topical application and swap across to the Dr Dean ReMag product for oral supplementation.

Using antihistamines for a few weeks while you fine tune your approach is totally fine.
it will take a few weeks of the right form of supps (like changing the magnesium, and using P5P) for the body to be able to manage histamine levels naturally.

and great news that there is already small amount of improvement.

[armstrongpilot]

Im not an expert...but i have suffered with lc for 2 years now...went from 165 down to 123 lbs...now back up to 150. The last 6 months have been very good to me. My routine is....before bkfst i have 5000 iu vit d3...then 400mg magnesium. Three pepto bysmal tabs and when i leave for work i have 1 packet of chloyestramine powder. I have another powder packet before bed. Some days 1 packet is all i need. Everyones "fix" is different.

[HockeyMom]

I stopped my B complex a few months ago but began taking B12 only.....should I add the B6 also?? Seems to be people under stress...just wondering!!

Laine

[Gabes-Apg]

Laine
Active form of B6 - P5P is very beneficial especially for those having histamine issues
I hadnt mentioned it to you yet as you were still sorting out your safe foods etc.

[tex]

Laine,

This product seems to work well for some of us because it contains the active forms of the important B vitamins and it's free of allergens.

https://www.amazon.com/Thorne-Research- ... B00O5AHC4S

Before I started using this one, I used a prescription version that costs over 5 times as much.

Tex

[Gabes-Apg]

Laine
Agree with Tex's recommendation - it may seem expensive but it is one of the best products for value for money for the quality of the ingredients, dosage, no MC nasty additives etc.. this is the product i use.

[TM]

Thanks everyone, for all the suggestions. I’ve upped my water intake significantly today. I’d been drinking several pints of ginger, lemon tea daily for many months, but stopped due to concerns with citric acid and possible other unlisted ingredients. When green tea seemed to increase heartburn, I basically eliminated tea, without replacing the liquid. Also started Loratadine today and will drop the diphenhydramine.

I’ve had consistently elevated blood sugar at least since 2002 with no improvement even on an obsessively low carb diet. However my A-1C has never been elevated and hovers around 5. I’ve been unsuccessfully trying to convince multiple MD’s since 2010—specialists I’d been referred to—that I was magnesium deficient. I thought I’d finally made some progress when in 2014 I presented my PCP with a list of all the related conditions (mentioned above) reflecting this. Finally someone took me seriously and at my request she ordered the EXATest. But it ultimately got me nowhere, since neither she nor my ND knew how to interpret the results and the unintended repercussions led to a steady escalation of more “diagnosable” issues. And sadly my PCP moved last summer, so I’m trying to “break-in” a new one. Recent serum Mg tests have been discounted as only mildly deficient so not requiring treatment.

My P5P should arrive on Thursday and I’ll order some remag. I’ll probably have to apply it topically—at least at first—while I try to talk myself into drinking it. I have an exaggerated gag reflex and sometimes just the smell of a supplement is enough to deter me—can’t get Pepto-Bismol down either. I don’t think I have issues that suggest Colestyramine, but don’t know anything about it. I tend toward low LDL and very high HDL.

Is it best to take D3 all at once or divided with oral magnesium?

Same menu as yesterday. So far so good—very encouraging!
TeriM

[Gabes-Apg]

that's great that the same menu has given you another day with minimal symptoms!

I spread my Vit D3, some in AM, and some in PM

for now, go with magnesium topically, what ever works best for you...

[tex]

Terri,

Do you skip taking a magnesium supplement before the blood draw on the day of the serum magnesium test? If you take a magnesium supplement, or eat any food that contains a significant amount of magnesium prior to the blood draw, it will cause your test result to be much higher than it actually should be.

Colestyramine is also used to treat bile acid malabsorption, which is claimed by some researchers to be the cause of diarrhea in approximately 40 % of MC cases. Unfortunately the percentage of patients who actually benefit from cholestyramine appears to be far lower than 40 % — more like a tenth of that, based on the reports from many members here who have tried it (mostly unsuccessfully). Sometimes it helps in cases that are refractive to other types of treatments, or in cases with partial (incomplete) control.

Low LDL with High HDL is exactly the opposite of the pattern normally seen in chronic magnesium deficiency cases.

Most of us take vitamin D in a single daily dose. This is superior to taking it in a single weekly or monthly dose (as prescribed by many doctors).

When you have a diet that works, consistency is the key to success.

Tex