Vitamin D and Autoimmune Disease - Tex's Book

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Post by tex »

BearcatRx wrote:When the symptoms overpower the medication and I experience loose stool (not necessarily full on D), I try to go back over my food consumption over the last 24-48 hours to try to determine anything that may be the cause. Thusfar I have not been able to pinpoint anything in particular. At least, none of the common allergens seem to be the culprit. I've been able to consume dairy, gluten and even hot wings with no problems.
Actually keeping a journal, as Gabes suggested, can be very helpful, because often it's things that are so well-established in our routine that we don't even think of them as a potential risk, that turn out to be the last piece of the puzzle. I had the same problem as you. I kept a journal of everything I ate and drank, plus symptoms, bowel movements, how I felt, medications, supplements, etc. for 3 and a half years. I kept my journal on a spreadsheet on a computer. But until I cut gluten out of my diet, I seemed to react to anything and everything, at random. And like you, I was a big fan of jalapeños and other chilis, and I thought that food wasn't interesting unless it was "hot".

The problem is that anti-gliadin antibodies have a half-life of 120 days. By contrast, the half-life of antibodies to most other food sensitivities are approximately 6 days, more or less. That means that the decay rate of gluten antibodies is so slow that they tend to dominate the attention of the immune system (because they are "always" there).

A few months after I eliminated gluten from my diet, I was able to detect reactions to other foods, by studying my journal. But as long as gluten had remained in my diet, the journal seemed useless. Not everyone is affected this way. Some of us can see results of a GF diet within a matter of days. But for many of us, it takes months after we change our diet, before we can detect any significant improvement, because our immune system is almost entirely focused on gluten until after we have avoided it for a while.

And certain foods (corn, in my case, and casein) took roughly 3 days to cause me to react. We each have our own individual reaction pattern, and times tend to vary from the times that others take to react. After you have avoided gluten long enough to be able to sort of reset your immune system, you will see that a typical gluten reaction usually begins around 5 or 6 hours after ingestion, though some of us react in as few as 3 hours, and others may take 12. Those who react in only 10 or 15 minutes are experiencing an IgE reaction, due to a classic wheat allergy. Those reactions are triggered as soon as the food contacts the mucosal tissue in the mouth.

The reactions that occur in the gut are mostly IgA-based reactions (that result in the production of T cells), thus the reason for the longer time for development of symptoms after ingestion of food. It is possible to have IgE-based reactions in the intestines however, and this results in mast cell reactions (the release of histamine, cytokines, etc.). These mast cell reactions can cause symptoms similar to the IgA reactions. The difference is that they can often be stopped/prevented by the use of type 1 antihistamines. IgA-based reactions cannot be controlled by antihistamines.

I too was always looking for "the culprit". But that approach is doomed to failure, because the problem is typically caused by culprits (not 1 culprit). I would avoid one food, and when that didn't make a difference, I would add it back into my diet and exclude another. I managed to waste a year and a half experimenting with that approach before it dawned on me why it couldn't work — we have to eliminate all of our inflammatory foods at the same time, in order to achieve remission. Because obviously as long as a single inflammatory food remains in our diet, the inflammation will continue to be generated, and MC symptoms will continue. After I did that (reduced my diet down to a few simple, basic foods that I was sure I could tolerate), within 2 weeks I was in remission (but of course this was only possible because after I initially cut gluten out of my diet, I never reintroduced it — I continued to totally avoid it. The point is, if we fail to avoid even a single food that is a significant source of inflammation for us, then remission will remain elusive.

And that's why treating this disease is an individual effort. We have to work out our own custom diet that is safe for us. Neither our GI specialist nor a nutritionist or dietitian can tell us exactly what our safe diet will be — we have to determine that ourselves. We can certainly follow clues, based on what has worked for others, but I doubt that any 2 of us follows exactly the same diet.

For example, many people choose chicken as a "safe" meat to use in an elimination diet. But experience shows that more than a few of us react to chicken. Many of us react to pork or beef. By contrast, virtually no one here reacts to turkey or lamb. So those are typically very safe choices. Most wild meats are also usually safe (except for bison, because virtually all bison alive today share DNA material with domestic cattle, due to both unintentional and intentional crossbreeding during the last century and a half). And certain fish commonly cause reactions (especially tuna and salmon). Examples of vegetables that are usually safe include carrots, squash, green beans, broccoli, cauliflower, and sweet potatoes. Peeled, to minimize fiber, and overcooked, to make them easier to digest. But as Gabes pointed out, portions of vegetables should be relatively small, in order to minimize total fiber intake (fiber is very abrasive to an already hyper-inflamed gut, and too much fiber can delay or even prevent remission). A good elimination diet will allow your intestines to heal, and then you can experiment with adding foods back into your diet.

It's not easy, but it works, and it allows us to get our life back (usually, without any need for any meds).

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Zizzle »

Well, since we're talking about Vit D and IgA...

I'm bummed. Got my kids' bloodwork back. The good news is their cholesterol and HDL are excellent (No surprise...they are kids). The lab somehow clotted their blood samples and didn't run the CBCs. Grrr!!! My daughter with all the GI issues had a Vitamin D level of 33. My son, with no health issues (only mild lactose intolerance), never gets sick, but short in stature had a D level of 22! (Mine was 17 when I got sick). And he takes a D3 supplement of 600iu almost daily! He has my HLADQ-2 celiac gene. Celiac blood tests were negative but his IgA was just below the low-normal range (54, I think?). They don't suspect primary immune deficiency, but they don't know what's going on. He gets more sun than most kids playing baseball all summer and outside in winter. Now he has to take 2,000 IU daily for 6 weeks and get retested. I'm also adding extra cal/mag and K.

I never expected D deficiency would show up so soon! What underlying issues should I be addressing?
I would have liked to order Enterolab testing, but now there's no point! How will we screen for celiac in the future? Wait until he's sick and do biopsies? I'm aimless now!
1987 Mononucleosis (EBV)
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Post by dfpowell »

BearcatRx,

With you medical training this dietary approach to treating a medical diagnosis must seem foreign. However, if you were to follow this forum for a length of time you would see the many people who get control of their MC symptoms following diet changes.
Also, we have a MD, Polly, who has been with this forum as long as Tex and she manages her microscopic with diet changes only, and did not go on medication.
I am a retired nurse and dietitian and was very skeptical about the diet changes suggested on this forum, but when I found medication alone did not help me, I decided diet was the best approach.
Several years ago, I tested negative for celiac via a blood test and endoscope, and for that testing I went back on gluten for a month. I did not seem to immediately react to eating gluten again, so I figured that gluten must be okay. I was on Entocort at the time and over the next several months it seemed to become less effective and eventually all of my MC symptoms returned. I was frustrated and that is when I found this website and realized there is a dietary component to MC.
The best way to figure out how to manage MC with diet is to eliminate the major reactive foods gluten, dairy, soy and eggs and then eat a very basic diet as Tex suggested previously.
Donna

Diagnosed with CC August 2011
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Post by brandy »

Hi BearcatRx,

I like your name btw! I think almost of us can tell milk-dairy is a problem within tests of 2-3 days. The problem with gluten is that the reaction is not severe like milk for many of us. Some of us have to go GF for like 8-12 weeks to see results if that makes sense. i.e. eliminating gluten reduces inflammation over time then lo and behold one day you see improvements if that makes sense. I went GF DF and SF at the behest of the forum. I could not tell much of anything early on but was tiring of suffering.

There is a lot of disparaging talk on the crohn's and UC forum about trying GF and it not working but many times folks try it for 1 week or so and it is not a long enough time.

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Post by tex »

Zizzle wrote:I never expected D deficiency would show up so soon! What underlying issues should I be addressing?
I would have liked to order Enterolab testing, but now there's no point! How will we screen for celiac in the future? Wait until he's sick and do biopsies? I'm aimless now!
It certainly appears that developing celiac disease is depleting his vitamin D level. But he is already on a GF diet, if my memory is correct, so you are already ahead of medical protocol (which says that you should allow the disease to destroy the villi of his small intestine so that he can be officially diagnosed, before intervening. :roll:).

Are you sure that your son wouldn't show valid results on EnteroLab tests? I thought that he was still young enough to qualify. Here are the normal IgA ranges listed on Medscape:
The reference range of immunoglobulin A (IgA) based on age is as follows:

Age 0-1 years: 0-83 mg/dL
Age 1-3 years: 20-100 mg/dL
Age 4-6 years: 27-195 mg/dL
Age 7-9 years: 34-305 mg/dL
Age 10-11 years: 53-204 mg/dL
Age 12-13 years: 58-358 mg/dL
Age 14-15 years: 47-249 mg/dL
Age 16-19 years: 61-348 mg/dL
Older than 19 years: 70-400 mg/dL
Immunoglobulins

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Zizzle »

Tex,
My son is definitely not GF, only low gluten because of what we eat at home. We had no reason to suspect celiac (other then the gene and mild lactose intolerance, and perhaps the bedwetting) until now. He is 10 yrs old, so an IgA of 54 is at the very bottom of the acceptable range. I'm not sure it's worth spending money on Enterolab...I suppose I could just do the gluten and dairy test?

On the other hand, could my 2 VDR gene mutations, assuming they passed to him, be enough to cause the low D?
1987 Mononucleosis (EBV)
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Post by tex »

Zizzle wrote:I'm not sure it's worth spending money on Enterolab...I suppose I could just do the gluten and dairy test?
I believe I would definitely at least do those 2 tests. If his IgA result is anywhere inside the normal range, and he is sensitive to gluten or casein, the test results should be positive.
Zizzle wrote:On the other hand, could my 2 VDR gene mutations, assuming they passed to him, be enough to cause the low D?
:shrug: How's your 25(OH)D level these days?

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by BearcatRx »

The reason I'm having a difficult time being able to at least TRY to figure out what my sensitivities could be is due to a period of about three months where I was in complete remission. This happened before I was diagnosed with MC and occurred exactly one year ago. I was very heavy into weight lifting and I was eating 4-5 thousand calories per day. Six meals spread out every three hours. I was eating pretty much the exact same thing every day and for this entire time, I had absolutely no issues. I didn't even have to take loperamide during this time. My daily diet included six eggs, bagels, english muffins, peanut butter, several pints of milk, olive oil, broccoli, white rice, meal replacement bars, asparagus, chicken, beef, fish and lots of protein powder. So as you can see I'm hitting every single allergy there could possibly be... and I was in complete remission. Now, I was definitely having all of the same symptoms of MC for about 7 months prior to this time... and in March, after three months in remission I began having problems again and that's when I decided to finally go to a GI specialist. I haven't been able to be completely symptom free since then either... but I also haven't been back on that diet.
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Post by dfpowell »

BearcatRx,

I can relate to your progression of symptoms. My first episode of diarrhea lasted a month and went away for 5 months, this pattern occurred several times until I had symptoms all the time. During the first few years of symptoms I did not make any diet changes, however once symptoms were constant and medication was not working, I found this forum, and decided to go the diet route. Also, I now know that I have a celiac gene and think perhaps that has been triggered. However, what causes MC in one person may not be the cause in another person, so it can be confusing to figure out. But the majority of us find following a restrictive diet for a period of time and testing food back in as our gut heals seems to be the most helpful approach.
Donna

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Post by Zizzle »

Tex,
I take 5,000 IU about 5 days a week and my level is in the mid-40s.

Since he had no issues with indigestion or D, I'm going to order Panel A1: Gluten/Antigenic Food Sensitivity Stool Panel Limited - $269
Tests for immunologic reaction to the four primary individual food antigens: Gluten, Milk, Egg, Soy
1987 Mononucleosis (EBV)
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Post by tex »

Hi Bearcat,

Similar to Crohn's disease and UC, it's not unusual to have periods of spontaneous remission with MC, they're just not as common with MC as they seem to be with the other IBDs. In the same way that doctors traditionally treat Crohn's and UC, you can wait until you relapse, and then attempt to get the disease back under control again.

Or, if you want to avoid all that damage to your body, and the punishment of dealing with subsequent relapses, you can simply do as we do, and cut all of our food sensitivities out of our diet, and preempt (prevent) those relapses. Eliminating the sources of inflammation comes with a huge bonus that conventional treatment methods completely miss — by minimizing inflammation, we maximize our odds of avoiding the development of additional AI diseases, and we not only prolong our life, but we enjoy a much higher quality of life, especially as we get older.

Trust me, once we have an AI disease, our odds of developing others is unacceptably high. And the reason it's high is because of the chronic inflammation that's perpetuated if foods that trigger the production of antibodies are allowed to remain in our diet.

I'm now old enough that when I look at my former high school classmates (the ones who have not already passed on prematurely), I can't believe how old they look. I'm appalled at how unhealthy they seem. And the most troubling part is that they don't seem to be particularly happy with the way their life is going. When I look at them, I see myself, before I changed my diet. 12 to 15 years ago, I was just like them. I ate anything I wanted, and everything that looked appealing. My knees were so arthritic that I had to use a cane to get around. Fortunately my digestive system finally tapped me on the shoulder and shouted in my ear, "Hey, dumbass, this BS can't continue. :shock: That ear is still ringing. :lol:

Developing MC was probably the best thing that ever happened to me (though it certainly didn't seem that way at the time. :roll:), because it will add years to my life, and they will be much happier and healthier years than they would have been if the disease hadn't forced me to change my lifestyle. After I changed my diet, not only did my digestive system issues disappear, but I was able to throw that cane away, and I haven't needed it since then. And no, I have never taken any medications for arthritis (though I do take flax seed oil and glucosamine sulphate).

Most of my classmates seem to have trouble walking. They move as though they are a hundred years old. Some are in wheel chairs. Most of them appear to have bad knees and/or hip problems. Many of them complain of digestive system problems, and heart problems, and aches and pains, etc. But when I suggest to any of them that they could resolve most of those health issues if they would just change their diet, they look at me as if I had suddenly sprouted 2 more heads. No one wants to change their diet unless they are convinced that they will die tomorrow if they don't. What's so difficult about changing our diet?

Those famous words from the Speaker of the House, John Boehner, seem appropriate here:
Ohhhh. Don't make me do this. Ohhhh. This is too hard.
Listen to your body. Your digestive system is trying to tell you something, and it may well be the most important bit of advice you ever received, because it can spare you from many years of misery somewhere down the road. Pretending that diet has nothing to do with digestive problems is similar to insisting that breathing polluted air has nothing to do with lung cancer, asthma, COPD, etc. It ain't rocket science — it's simply common sense.

A few months from now, I would love to see a post by you describing how your symptoms are gone, and how changing your diet has turned your life around.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Zizzle »

It's true Tex.
My old high school classmates are starting to fall apart, and I'm only 40!! Tons of GI and autoimmune diseases, thyroid issues, cancer scares, obesity, etc.

So sad what the food industry has done to this country in 30 years.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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Post by tex »

Zizzle,

Depending on the specifics of the VDR-related gene mutations, VDRs are primarily activated by the active form of vitamin D [1,25(OH)2D]. Technically, VDRs can be activated by 25(OH)D, but the affinity for 1,25(OH)2D is on the order of about 1,000 to 1, making activation by the inactive form of vitamin D rather irrelevant. Of course if the inactive form [25(OH)D] is deficient, then obviously the active form will also be deficient.

Since your 25(OH)D level appears to be reasonably appropriate for your supplementation rate, it seems unlikely that your genetics are adversely affecting your 25(OH)D level. That would appear to suggest that even if your VDR-associated gene mutations were passed on to him, that status shouldn't affect his serum vitamin D level. IOW, it appears that inflammation (or some other issue) is causing a higher than normal depletion rate of his vitamin D supply.

The results of that test panel should answer most of your main questions about any food reactions that might be occurring.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by aquilegia »

Tex,
I have been thinking the same thing about the health benefits of having microscopic colitis. My diet is much better since I got MC - no junk food, no sweets or ice cream, low fat. My waistline is what it should be. I just wish I could eat salads and more vegetables.
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Post by JFR »

Me too, I sometimes really marvel at how healthy my diet is. I used to take, at one time, or another, a statin, a drug for high bp, 2 different asthma medications, an antidepressant, anti-anxiety medication, pills to help me sleep, a ppi. Slowly but surely I gave them all up and now take no prescription medication. I believe that my healthy diet has allowed me to live prescription free. I meet other people my age and so many of them look old (I am 67), arthritic, looking forward to joint replacement surgery and the numerous effects of type 2 diabetes. In so many ways I am lucky that my digestive problems forced me to make changes in my diet that have done nothing but good things for me. People fear dietary change so much. It is a shame because I think so many people could benefit.

Jean
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