Newbie:Enterolab results and pre-menopausal osteoporosis ?'s

[ErinMN]

Hello everybody! This is a remarkable community and I'm so grateful for it and for The Book as well. Brought it along to my last GI appt with a nurse practitioner and she was actually interested. I think NPs are possibly more open than MDs. My GI has said he's not aware of a food sensitivity issue with MC but is open to learning. The NP ordered the serum genetic screen for gluten sensitivity, so I'm waiting on that. Thanks in a huge way to Tex who satisfied the researcher in me with his work.

Have had a fairly fussy tummy all my life and especially when under stress. My first year as a baby lawyer was bad. But then over New Years I developed D and it never went away. My mom had been hospitalized over Christmas and had emergency surgery (but is fine now) so maybe that was my trigger. Luckily my PCP eventually ordered a colonoscopy and I was diagnosed with LC on 1/25. I've been on 9 mg of budesonide ever since and the 6 weeks was just extended to 8 weeks because I still had D every morning. Down from several times a day, but still always D.

EnteroLab assured me I could still do the testing as I wasn't on budesonide for too long, so here are my results. Took them less than a week, which is very impressive and so helpful (even if the results are a bit sad):

Fecal Anti-gliadin IgA 83 Units
Anti-casein (cow’s milk) IgA 20 Units
Fecal Anti-ovalbumin (chicken egg) IgA 17 Units
Anti-soy IgA 37 Units

Mean Value 11 Antigenic Foods 27 Units

Nothing in the "no problem" category.
Items in the +1: Rice, Pork, Almond, Cashew, White Potato
Items in the +2: Corn, Oat, Tuna, Chicken, Beef, Walnut
Nothing in the +3

Grains:
Grain toward which you displayed the most immunologic reactivity: Corn
Grain toward which you displayed intermediate immunologic reactivity: Oat
Grain toward which you displayed the least immunologic reactivity: Rice

Meats:
Meat toward which you displayed the most immunologic reactivity: Tuna
Meat toward which you were next most immunologically reactive: Chicken
Meat toward which you displayed intermediate immunologic reactivity: Beef
Meat toward which you displayed the least immunologic reactivity: Pork

Nuts:
Nut toward which you displayed the most immunologic reactivity: Walnut
Nut toward which you displayed intermediate immunologic reactivity: Almond
Nut toward which you displayed the least immunologic reactivity: Cashew

Nightshades:
You displayed immunologic reactivity to white potato.

Pretty bad, I'd say, but there's nothing for it but to use the knowledge and get better. On Tex's advice, I'd already cut out gluten about two weeks ago and most dairy. I've now added soy and the rest of dairy except for grass-fed butter. Eventually I figure I'll have to cut that out, but I'm already feeling much better anyway.

I love lamb, so am eating lamb and turkey based on other members' advice. I eat a lot of sweet potatoes too and cooked kale. I'm eating pork, although I'd given it up for other reasons (grew up on a farm and the pigs were too smart. Chickens and cows? Not nearly as much!) I need the protein and it's my least reactive meat. Argh. I drink almond milk, although it's a +1 I think that's still okay. I'll be happy to reintroduce other fish than tuna because I love seafood. I figure shellfish is still okay too. And rice? Really?? Who has a problem with that? At any rate, all my favorites are over in the +2 category, which is depressing.

My questions:
1. The Enterolab people have suggested (and discounted) a subsequent fat malabsorption test based on my "abnormally high" gluten results. Would you agree? I don't seem to have the stool issues I read about with malabsorption (it's not pale and fluffy--heaven help me).
2. I've been diagnosed with osteoporosis based on BMD and two fragility fractures. I'm 45 and broke my hip in my 20s and my wrist in my 30s. Both from a standing height, hence the problem. I was always a good eater and pretty healthy. We drank a ton of milk and had good "meat and potatoes" meals growing up. My osteoporosis is considered ideopathic at this point, but it's dawned on me that all of this is of course related. My vitamin D levels have always been low, but I've been supplementing the last few years with 4000 units per day. Anybody else in this group? Maybe it's been malabsorption all along.

Thanks for reading my long-winded first post. This is a smart and kind community, which is frankly pretty rare on the internet. Usually it's one or the other, so thanks for all that work you've all done!!

[brandy]

Hi Erin,

Welcome!

Your osteoporosis is most likely tied to lifelong gluten sensitivity. Google celiac and osteoporosis. You should get some improvement in your bones or at least maintain bone density by going GF.

I would concentrate on healing your gut first and then work on bone issues. Healing your gut will help with absorption of nutrients needed for bone issues. I have a thread that I'm working on that tells what I am doing for bone issues. Keep an eye out for it. I should post another update in a week or so.

Brandy

[ErinMN]

Thanks Brandy! I just saw that thread below and felt a little bad about asking some of the same questions. Whoops! In some sense I guess I'm glad for the LC diagnosis since I was undermining my bones all along. Silver lining?

Wait, am I sensitive to silver??

Appreciate your response!

[tex]

Hello Erin,

Welcome to our Internet family. And thank you for the kind words.

Please don't be surprised if the blood test result for gluten sensitivity is negative. The probability is almost overwhelming that it will be. Those tests are so insensitive that they typically only show a positive result for less than 10 % of celiacs, and doctors currently have no blood test that will detect the type of gluten sensitivity that most of us here have, non-celiac gluten sensitivity. That's why we have to rely on the stool tests.

To be honest, while it's always interesting to see the results of a fecal fat malabsorption test, those results are somewhat of a moot point early on because malabsorption issues are so common with MC. One reason why they suggested that test is probably because higher antibody test results correlate with longer reaction periods. IOW, the longer we have been reacting to a given food, the higher our antibody level will be. And of course the longer we react, the more damage our small intestine will accrue. More damage usually correlates with a more severe fat malabsorption problem. But of course it's possible to have a malabsorption problem without having steatorrhea.

Most of us just assume that we probably have a malabsorption problem, and by correcting our diet we will be able to correct that problem as our intestines heal. If we are still having symptoms after a year or more of strict diet changes then a fat malabsorption test might provide some insight into the extent of the problem. At an anti-gliadin antibody level of 83, I believe that I would pass on the test, but that's strictly a personal choice. As I recall, I ordered that test after I had been following a restricted diet for a couple of years or more, just to make sure that my gut was healing.

You're certainly right on target about pigs. Not only are they intelligent, but they have a monogastric (single stomach-based) digestive system that's very similar to ours. It's so similar that successful organ transplants to humans are sometimes done. And growing up on a farm and observing chickens' dining habits (recycling manure, for example) in the barnyard are enough to take chickens off my lost of preferred foods.

Sensitivity to rice is indeed somewhat uncommon to rare, but more than a few members here have found that they are sensitive to rice. In your case (with an overall score of 27 for those 11 antigenic foods), since rice is only a 1+ food, and listed as the least reactive grain, you can probably safely eat rice at least occasionally without any significant problems.

As Brandy pointed out, your osteoporosis problem is almost surely not due to a calcium deficiency, but rather a life-long deficiency of vitamin D and magnesium, either due to, or made worse by the malabsorption problems associated with gluten sensitivity. Note that a vitamin D deficiency is associated with an increased risk of developing an IBD (including MC). And note that IBDs (including MC) deplete vitamin D and magnesium, and corticosteroids (including budesonide) deplete both vitamin D and magnesium. So many drugs deplete magnesium that it's no wonder that most people are magnesium deficient these days. Check out this list:

Drugs That Deplete Magnesium

Unless a recent test shows your vitamin D level to be above about 60 ng/ml, you would probably greatly benefit from roughly doubling your vitamin D intake, plus a significant magnesium supplement. Both are absolutely essential for utilizing calcium to build new bone tissue. But we have to be careful with how we supplement magnesium, because the wrong forms of oral magnesium in larger amounts can act as a laxative. Chelated magnesium (magnesium glycinate) is the safest oral form, and the safest way of all is topical administration of a magnesium spray or oil. Many of us use a combination of oral supplementation and spray-on or rub-on magnesium in order to get enough without promoting diarrhea.

Again, welcome aboard, and please feel free to ask anything.

Tex

[brandy]

Erin,

No worries! also I saw your age. Hormones are controversial but due to your young age of osteoporosis you might want to consider bioidentical hormones when you hit menopause as estrogen is bone protective. I was eventually able to get on them and think they helped me when I was in a rough place with MC.

[ErinMN]

Thanks Tex! Is it sad that I'm a little star-struck by your nice long post to me? Well so be it!

The two celiac serum tests I've had were both negative. This one's actually the DNA test. The nurse practitioner offered it and said it will at least definitively say whether I have a gluten problem or not. I suspect, however, it will again focus on whether I have DNA associated with celiac, right, not any other reason gluten may be an issue? That part I don't know, but I don't think it will make a difference no matter what this test shows. I have a sister with a gluten problem and autoimmune runs through the family (parathyroids, thyroids, RA, diabetes, blah, blah, blah). And the proof is in how I'm doing so much better without the gluten anyway.

I've been upping the supplements, using the OsteoNaturals brand developed by a chiropractor who dealt with terrible osteoporosis himself and wrote a book on it. In my mind, he's the Tex of Osteoporosis. So those seem to hit a good combination of easily digested calcium plus magnesium and D (and other supplements). So between those and my liquid 4000 D3's a day, I may be doing well but will do some math tonight. Tex, I'd already read about the magnesium, thanks!, and got a spray version. I give myself a nice spray of it a couple of times a day. Hard to know the dosage, but it looks like overdoing it is pretty difficult, especially in the state I've been in. My D3 last tested at 65.9 in Sept of last year. Hooray!

Has anybody's thyroid numbers been very wide-ranging as well? I did TSH tests over the last 6 years and they'd been going up progressively from 1.83 to 3.507 as recently as 11/14. Last week's TSH was 1.429, the lowest I've ever had. Does that possibly reflect going off gluten (seems quick from beginning of Feb or so) or the result of LC? Odd.

Tex, you said "In your case (with an overall score of 27 for those 11 antigenic foods), since rice is only a 1+ food, and listed as the least reactive grain, you can probably safely eat rice at least occasionally without any significant problems." Is the context for that to mean that 27 is pretty high? I tried to get a sense from others' results but it seemed pretty wide-ranging. By the way, you are welcome to post my results in the overall list as well if you like.

I still need to "out" myself to some of my dearest friends who know I've not been well, but it will be hard to take in that this means no more eating out and that I need to take care of myself when I go to others' homes for dinner. My husband's been great, but he's still trying to figure out what I can and can't eat. What am I saying--so am I!!

[ErinMN]

Thanks Brandy! I'll be meeting with my endocrinologist next month and will ask about it. She had me on fosamax for 1.5 years, but I quit it after doing my own research, plus developing throat reflux. The ENT who diagnosed my throat reflux then prescribed prilosec, which luckily I didn't take after finally putting on my big girl pants and researching on my own and realizing all the impacts it would cause (and not heal me anyway).

Each drug we get is a bit of Russian roulette and I've left the casino!! Low acid and no late-night eating has cured my throat. Figuring out my food sensitivities will cure my MC.

[tex]

I suspect, however, it will again focus on whether I have DNA associated with celiac, right, not any other reason gluten may be an issue?

Correct. For some strange reason, most medical professionals assume that those tests they use are somehow perfect, so if they show a negative result that means that the patient cannot have gluten sensitivity. Not only is that completely incorrect, it's a pathetic assumption to make, since there's absolutely no evidence to back up that assumption. As an engineer, I don't understand how someone who considers themselves to be a scientist could possibly make such an invalid assumption. That's mind-boggling (to say nothing of sad). And they all do it, so it's not your nurse practitioner's fault. She's just following standard protocol.

Good for you. I agree, that's an excellent D3 level. If you're taking a calcium supplement, I hope that your calcium/magnesium supplement ratio is approximately 1:1. The obsolete recommendation was for 2:1, but the difference is nothing to argue about since either one will work reasonably well.

Has anybody's thyroid numbers been very wide-ranging as well? I did TSH tests over the last 6 years and they'd been going up progressively from 1.83 to 3.507 as recently as 11/14. Last week's TSH was 1.429, the lowest I've ever had. Does that possibly reflect going off gluten (seems quick from beginning of Feb or so) or the result of LC? Odd.

Of course an increasing TSH test result implies declining thyroid output, and a decreasing TSH test result suggests either improved thyroid output or more effective utilization of a thyroid hormone supplement that you might be taking. When my magnesium deficiency finally became severe last spring (because of depletion by repeated antibiotic use), my TSH crashed and as my TSH was going down I had the only kidney stone problem I've ever had. To show you how outside issues can affect thyroid function, consider my TSH results as my magnesium deficiency worsened. Note that for these test results the normal range was considered to be 0.36–3.74

In Oct., 2013 my TSH was 1.47

In Oct., 2014 my TSH was 0.28 (within a month after that I had the first of 2 separate kidney stone events, exactly 3 weeks apart).

In Feb., 2015 my TSH was 0.07 (this is when we decided to cut my Armour dose in half)

On 04/22/15 my TSH was 0.66 (this was the day I went to the ER with severe magnesium deficiency symptoms. I took no magnesium or any other supplements that morning before the test — only my thyroid supplement)

On 04/24/15 my TSH was 3.14 (this was the day after I discovered the flagged magnesium test result and ramped up my magnesium supplement)

In Jan., 2016 my TSH was 2.86 (so apparently cutting my dose in half left me somewhat marginally treated. IOW my thyroid hormone treatment was not the cause of my TSH crash, the problem was the magnesium deficiency.

Note how my TSH went from 0.66 (with no magnesium supplement before the blood draw) to 3.14 in only 2 days after I resumed taking magnesium, but again, no magnesium supplement before the blood draw). This suggests to me that a severe magnesium deficiency can play havoc with TSH values.

So my interpretation of your recently lower TSH result is that the result is either a fluke, or your magnesium reserves may have been depleted somewhat by the budesonide or some other factor. A magnesium deficiency can cause virtually the same symptoms as hyperthyroidism or overtreated hypothyroidism, and apparently (according to my experience) it does so by actually suppressing TSH values. Therefore my guess is that a magnesium deficiency compromises the functioning of the pituitary gland, much as it compromises the functioning of the pancreas and various other organs (including the heart). I actually had most of those symptoms at various times for more than several months before they became so bad that I went to the ER.

For reference my magnesium blood test result showed 1.7 mg/dL on 04/22/15 (normal range 1.8 - 2.4 mg/dL). But remember that this test result showed up only because I didn't take a magnesium supplement that morning. If I had taken a magnesium supplement I have absolutely no doubt that the test result would have been normal.

Yes, I would guess that an overall score of 27 is probably somewhere in the upper third of typical results for the 11 other antigenic foods. That's certainly high enough that you can't necessarily disregard any of the foods that showed reactions, but there's a good chance that the lower-rated foods might be useable, especially on a rotation diet basis.

Tex

[brandy]

Hi Erin,

I reread your thread a little more closely.

Erin said

I was diagnosed with LC on 1/25. I've been on 9 mg of budesonide ever since and the 6 weeks was just extended to 8 weeks because I still had D every morning. Down from several times a day, but still always D.

On the board we find that the U.S. docs do not prescribe a long enough regimen of Entocort. Folks do better with a longer stint of Entocort...think 4-5-6 months or so. Folks seem to do better with a very slow taper at the low end. I was on Entocort for 4.5 months after listening to the board. The last 4 weeks I was on one pill every 3 days until I finally stopped.

Erin said,

I've been upping the supplements, using the OsteoNaturals brand developed by a chiropractor who dealt with terrible osteoporosis himself and wrote a book on it. In my mind, he's the Tex of Osteoporosis.

I just read his book. He is very motivational. Unbelievable to be an Olympic athlete and have a fracturing at age 45 as a male. Listen closely to your body regarding supplements. Sometimes less is more for us short term. Consider reducing supplements during the time you are getting off of Entocort and then reintroducing supplements slowly.

Erin said,

I need to take care of myself when I go to others' homes for dinner.

A lot of us bring our own food particularly early on. It reduces the stress.

You are at the right place!

[Gabes-Apg]

welcome to the group

Brandy and Tex have answered your questions

i did see this comment by you

Figuring out my food sensitivities will cure my MC.

and wanted to mention that MC is 'for life' we cant cure it persay..
Yes - with the right management plan we can achieve remission and life with minimal symptoms. some can go years and not have any major issues, albeit for some, a stressful event or a medical procedure and MC can come back full force.
and there are some here in the group that have mild ongoing symptoms for years..

I dont want to be a negative person and dishearten your spirit! moreso, i think people need to have realistic expectations of life with MC and the healing journey. its about progress, not perfection..

Keep reading, keep asking questions! and happy healing

[tex]

Erin,

Thanks. I added your results to our list. I forgot about that yesterday, but remembered it today.

Tex

[ErinMN]

You all have been wonderful, thank you! I think you probably know how much it means to be listened to when you're otherwise getting the vibe that you're a hypochondriac. I don't buy into the "idiopathic" thing so much and what the three of you have said and lived (along with the other great members of this board) makes sense.

As expected, my genetic test came back yesterday negative for celiac. I suppose this means I can eat gluten, right? KIDDING! As I said to my husband last night, it's just a good thing I don't need the doctors to be on board, do I? There's nothing they can do for me, really, that I can't do better for myself so it doesn't matter whether they are on the same page. I do wish, however, that they knew this for the sake of people that didn't find Tex's book or this group.

Tex--thanks for all the info on thyroids. I am so glad to know the connection now with magnesium and will pay close attention to that. I get occasional leg cramps at night and once did have my magnesium tested. It was fine, but I now know it's so variable that I can pretty easily discount the result. I look forward to broadening my diet horizons and think I'm probably going to be a pretty quick healer as I'm already responding so well to what I've done.

Brandy--thanks to you as well for the additional info you provided! Given your bone issues as well, it's helpful to hear how it interplays with Entocort. I think Entocort's relatively safe for bones. I hope the docs will let me taper slowly off. Were you in remission before starting the taper? I think I'm pretty close now. I had My First Normal Poo yesterday. :-) Does Hallmark have any cards to celebrate? There's a part of me that wants to start decreasing the entocort as soon as I feel I'm in remission, if only because I'll then have extra pills to do my own taper. Please let me know if that's when you started tapering if you don't mind.

And Gabes--thanks as well for your kind words! You're right that it's long term remission I'm after. At this point remission is the cure and I'll get there (I'm stubborn...) because of all this wisdom. I count my blessings that I have a supportive husband, nearby health food grocery store, and the brains to put this all together. I've read some of your other messages about the emotional aspects of healing and will find me some downloads and inspirational podcasts. The chiro in the book I was discussing with Brandy is one of those inspirations (although I have zero interest in marathons, ugh) so thanks for the reminder that those stories really work for me.

You guys are the greatest! <--FYI, I am a redhead. Happy St. Pats!

[brandy]

You guys are the greatest! red-haired girl <--FYI, I am a redhead. Happy St. Pats!

http://www.ncbi.nlm.nih.gov/pubmed/11482004 This is about why celiac is so common in Ireland.

Listen to your body regarding Entocort stepdown. If you get constipation definitely step down or it will get worse. I think I was on 3 pills for 2 weeks, 2 pills for about a month , 1 pill for a month, every other day for a month, and every third day for a month. This is just an example, by all means use your body as a guide, when you get consistent normans for awhile or constipation step down. Please note many many members are on entocort longer time than what I was on. Overly rushing the stepdowns can lead to relapse....kind of like what happened when the doc had you on Entocort for 6 weeks which is too short of a time. Hope this helps.

Most folks get off of the board when they are in long term remission. It is definitely achievable.

[tex]

Erin,

Another thing I forgot is the butter you mentioned. Butter is loaded with casein. However, most of us can tolerate refined butter (known as ghee), because it is liquid butter with the casein removed.

Tex

[ErinMN]

So far so good! I've remained virtually gluten free since I posted (never intentionally eat any gluten but have made a couple errors when eating out) and it's been so much better. Like Gabes said above, I guess I'll never be *cured* but I'm able to lead a mostly-normal life. I did get off the Entocort after a nice long taper. I've been off it for a few months now, but did get an Rx for 30 pills since I'm traveling to France in October. I'll feel better having it just in case.

One thing I've not mentioned is my childhood exposure to Johne's disease as we had two beef cows with it. If a person can pick it up from a cow, I did as our family engaged in extraordinary efforts to try to keep one of them alive--hoisting her up on a sling, rubbing down her wasting legs, etc. She was an expensive cow. My GI thinks most of what I do is a bit silly, so I'm sure he'd not care, but wonder if a more intellectually curious doctor would as I'd be happy to help a researcher if I could.

At any rate, thanks so much for your support!