Blood Test Results

[Deanna in CO]

I got test results back from Kaiser today and here's what they found:

IgA - 204
B12 - 843
Folate - 14.3
Ferritin (Iron) - 32
Vitamin D - 36

My thoughts:

1) It looks like my IgA level is normal. That means I could do the Enterolab tests. It also means the celiac testing is more likely to have been correct a couple of years ago.

2) B12 and folate look ok to me. I am currently taking 100 mcg/day of B12 and 400 mcg/day of folate. It would seem that is enough. (Strange that my brain is so foggy - I was almost hoping I could just take some a B12 supplement and be more alert. I'm struggling with confusion and an inability to think clearly.)

3) Iron - This looks on the low side to me. Kaiser says normal is 13 to 150. I am not taking a multivitamin or any iron supplement. Do I need more iron than this?

4) Vitamin D - Kaiser says normal is 20-100. From what I've read here, 36 is pretty low, especially since I've been taking 6,000 IU of Vitamin D per day for the last couple of months. Do I need more of this?

Also Dr. Lewey recommended an upper endoscopy for stomach pain (which is mostly gone now that I started taking Betaine HCl with every meal) and to biopsy esophagus, stomach, and especially small intestine tissue - to look for signs of healing celiac disease. It will cost me $100. Do you think there are enough potential benefits to the endoscopy to justify the cost and hassle? My one thought is that if we're going to find healing celiac, it would have to be done now; in a few more months any possible damage will be healed and I don't ever intend to resume eating gluten. OTOH, it has to be done by my previous GI (who did find the MC but was clueless as to what to do about it) - I don't really expect he will recognize healing CD if he sees it.

Thanks!

Deanna

[tex]

(Strange that my brain is so foggy - I was almost hoping I could just take some a B12 supplement and be more alert. I'm struggling with confusion and an inability to think clearly.)

The brain fog goes with gluten-sensitivity, and MC, and it will fade away as your intestines heal, and your GI symptoms disappear.

Iron - This looks on the low side to me. Kaiser says normal is 13 to 150. I am not taking a multivitamin or any iron supplement. Do I need more iron than this?

I'm not much of an authority on iron, so I'll leave that question for someone who knows more about it.

From what I've read here, 36 is pretty low, especially since I've been taking 6,000 IU of Vitamin D per day for the last couple of months. Do I need more of this?

Many of us would like to have our 25(OH)D level up around 50 or so, and some of us, (such as me), would prefer that it be even higher, but at 36, you're "OK", and you shouldn't be in any danger of adverse effects due to a vitamin D insufficiency. In order to help keep your immune system operating at peak efficiency, it shouldn't hurt anything to push your level a bit higher.

I tend to agree with your assessment of the celiac situation. If you want a celiac diagnosis, now is the time to get it. It's the pathologist who should make the diagnostic determination, after examining your biopsy slides, but we've seen cases where GI docs ignored the pathologists' findings, and made their own (mistaken) diagnosis. In such situations, requesting a copy of the pathologist's report will usually clarify the issue. From a practical standpoint, it's kind of a moot point, since MC trumps CD, anyway, and controlling MC symptoms by diet will also control CD symptoms. The difference of course, is that official diagnosis, which may or may not be of any value to you.

For example, if you ever wanted to join a local celiac support group, you would almost certainly need an official diagnosis. For some strange reason, most of those groups are somewhat elitist, and they tend to look down their noses at anyone who claims to be gluten-sensitive, but who doesn't have an official diagnosis of celiac disease.

FWIW, I'm probably a celiac, (I have a celiac gene, and I had a lot of small intestinal damage), but I've never been diagnosed. I've never had a doctor, nurse, or hospital dietitian question my claim when I advise them that I am gluten-sensitive. I've had major abdominal surgery twice, in the past 7 years, both of which involved hospital stays of close to a week, so they've had plenty of opportunity to question my claim, but no one has ever done so.

Tex

[JLH]

My GIG (Gluten Intolerance Group) welcomes all.

http://www.gluten.net/local-branches.aspx

[tex]

Joan,

That's not surprising, since they're not a celiac-based group.

Tex

[Zizzle]

"The DC Metro Celiac Organization (DCMCO) is a gathering place for people with celiac disease or gluten intolerance, and their families and friends.

The Group has meetings, issues a newsletter, offers a list serv, and coordinates special activities. Dues are $20 per year."

[Deanna in CO]

Hi Tex,

I have a couple of questions. I've mentioned before that I've been GF (as well as free of almost all sugar, preservatives, artificial sweeteners, corn, and other non-natural stuff) since Thanksgiving, DF since Christmas, and soy- and egg-free since February. (I also cut out almonds about a month ago and saw progress almost immediately.). Over the past few months I've also eliminated pretty much all uncooked fruit and veggies. I'm seeing some improvement, but I'm nowhere near consistently improved, and I am confused and frustrated.

The biggest source of my confusion has to do with my supplements. Most of them are pretty ordinary - B-complex, vitamin C, vitamin D, iodine, selenium, cal-mag-zinc, L-glutamine. But I'm also taking psyllium - and I know, everything on this site says I shouldn't. The trouble is, every time I try to go off the psyllium, even for a few hours, I pay for it in severe WD the next day. And no matter how long I stay off it (as long as several weeks, once, when my Dr insisted I go off ALL my supplements) I get no improvement - until I go back on it, and then I get better pretty quickly.

So here are my questions:

1) Do you have any explanations for why this would be? In pretty much every other way, I seem to fit the MC profile pretty accurately. I am gradually - very gradually - getting better being GF/DF/EF/SF, etc. I am having to make diet changes VERY slowly. I don't appear to tolerate raw fruits and veggies very well except bananas. (I don't see signs of mast cell involvement and they didn't find mast cells when they restained my biopsies, so I guess that's good.) But the psyllium is a mystery. I know it's a bulking agent and absorbs water in the colon - is that why I improve when I take it?

2) What do I do about it? I'm afraid taking it is, as you've said before, like taking sandpaper to my intestinal walls - but without it, I have severe WD, and every bit of progress from all the dietary changes completely disappears (and I do mean completely - as if the dietary changes have done no good at all - and I get no better until I go back on it). Don't get me wrong - when I eat the wrong things, or get stressed, I get bad even with the psyllium - but without it, nothing seems to make any difference.

I really value your advice. I know you're not a doctor, but when it comes to MC, it seems to me your research makes you better than a doctor (especially these dratted know-it-all GI's!). :-)

Thanks,

Deanna

[tex]

1) Do you have any explanations for why this would be? In pretty much every other way, I seem to fit the MC profile pretty accurately. I am gradually - very gradually - getting better being GF/DF/EF/SF, etc. I am having to make diet changes VERY slowly. I don't appear to tolerate raw fruits and veggies very well except bananas. (I don't see signs of mast cell involvement and they didn't find mast cells when they restained my biopsies, so I guess that's good.) But the psyllium is a mystery. I know it's a bulking agent and absorbs water in the colon - is that why I improve when I take it?

One possibility that I can see would be that you may be particularly sensitive to certain chemical compounds in the psyllium. Psyllium is not just another source of fiber. It has much more soluble fiber than any other natural source (over 70%). But the benefits that you apparently experience may be due to the presence of certain bioactive components of psyllium known as glycosides, such as the phenolic compounds known as acteoside and isoacteoside. These are common in plants, (especially in psyllium), and they have have been shown to be capable of promoting various biological activities, including antiinflammatory and antioxidant action. Maybe your particular body chemistry just responds particularly well to these compounds.

Another clue that you may be especially responsive to glycosides can be seen in the fact that you react adversely to almonds. Almonds contain a cyanogenic glycoside known as amygdalin, (a chemical compound which was promoted under the names "Laetrile" and "Vitamin B17" as a cancer cure, many years ago). Amygdalin, however, is dangerously toxic, in significant amounts. It can also be found in many other foods, such as cherries, apples, plums, almonds, peaches, apricots, raspberries, and crabapples). Cassava, (the source of tapioca), also contains large amounts of a cyanogenic glycoside. Sorghum, which is a close relative to maize (corn) uses cyanogenic glycosiodes in it's roots to prevent damage from rootworms. Corn can't synthesize the chemical compound, so root worms do major damage to corm plants, unless the grower uses either chemical pesticides, or natural pesticides, such as Bacillus thuringiensis, (which is also now available in GMO corn seed). Sorghum is immune to root worm damage, though, due to the use of glycosides.

Maybe the presence of cyanogenic glycosides in these fruits helps to explain why so many of us have problems with them when our intestines are ultra-sensitive. The problem may be more than just fiber -- it may be a combination of factors. Sensitivity to tapioca has always been a mystery -- perhaps this explains why so many of us react to tapioca.

2) What do I do about it? I'm afraid taking it is, as you've said before, like taking sandpaper to my intestinal walls - but without it, I have severe WD, and every bit of progress from all the dietary changes completely disappears (and I do mean completely - as if the dietary changes have done no good at all - and I get no better until I go back on it). Don't get me wrong - when I eat the wrong things, or get stressed, I get bad even with the psyllium - but without it, nothing seems to make any difference.

Well, in the final analysis, you need to do what your body dictates. The psyllium effect may be sort of like a corticosteroid. Corticosteroids help to suppress inflammation, and that enables them to suppress the symptoms of MC. However, unfortunately, corticosteroids also suppress healing, (because inflammation is an essential first stage in the healing process). IOW, as long as corticosteroids are used, clinical symptoms are resolved, but any significant amount of healing is on hold, because the more effectively the corticosteroid suppresses the inflammation, the more effectively it also prevents healing. It's a big paradoxical issue in treating MC with drugs. As so many of us have found when trying to control this disease, treatment is far, far more complex than most gastroenterologists seem to be able to comprehend.

Thanks for the kind words, but unfortunately, I don't have all the answers either. We're all in this together, though, and as long as we continue to make progress, eventually we may make a breakthrough to the next level in understanding and treating this disease.

Tex

[humbird753]

Hi Deanna,

I recently had my blood tests done as well. It did surprise me that my B12 was 863 for the same reasons you mentioned - brain fog and confused thinking.

I am glad you asked that question as it clarifies it for me too.

Paula

[Deanna in CO]

Well, in the final analysis, you need to do what your body dictates. The psyllium effect may be sort of like a corticosteroid. Corticosteroids help to suppress inflammation, and that enables them to suppress the symptoms of MC. However, unfortunately, corticosteroids also suppress healing, (because inflammation is an essential first stage in the healing process). IOW, as long as corticosteroids are used, clinical symptoms are resolved, but any significant amount of healing is on hold, because the more effectively the corticosteroid suppresses the inflammation, the more effectively it also prevents healing. It's a big paradoxical issue in treating MC with drugs. As so many of us have found when trying to control this disease, treatment is far, far more complex than most gastroenterologists seem to be able to comprehend.

Hmm - so the psyllium may be doing what I would otherwise take the Entocort for? I think I'd rather have the psyllium. BUT - it sounds like you're also saying the psyllium could be preventing the ultimate healing I want. Ugh - tough choice in that case. I wonder if gradually phasing the psyllium out might be better than trying to drop it all at once. I'm taking capsules - 4 capsules, 3 times a day - so I could slowly drop them, one at a time, and see whether I do better that way.

Thanks so much for your help. I know you don't have all the answers, but you do know a lot about this disease, and it's tremendously valuable to those of us who are just starting on the journey.

Thanks again!

Deanna

[tex]

Deanna,

In retrospect, comparing psyllium with a corticosteroid may not have been a fair comparison. The difference is that rather than to prevent healing, psyllium causes additional physical damage to the mucosal cells, (thereby creating a need for additional repair that is not a part of the normal scheduled cell replacement program. It does not retard healing, though.

"Experts" claim that fiber is beneficial for "regularity", because the relatively coarse nature of fiber, (being totally indigestible), actually physically tears the cells of the mucosa as it passes by. By damaging some of the cells, this stimulates the mucosal cells to produce additional mucus, which serves to speed up motility, and this is claimed to be a "good thing" because it promotes "regularity". The thing is, all of the mucosal cells are normally replaced about once each week, anyway, due to normal maintenance, so the additional damage may not be as significant as is seems.

The downside is that with MC, most of us need reduced motility, not increased motility. The point is, healing will not be interrupted by the presence of psyllium, but additional damage, and the need for additional healing, is created. Here's a reference on the topic of fiber in the diet, written by one of the foremost authorities on the paleo diet:

http://www.proteinpower.com/drmike/fibe ... e-and-aft/

Phasing out Entocort very slowly helps because it allows healing to resume while decreasing amounts of the drug are still available to help to control symptoms.

You're most welcome,
Tex

[Deanna in CO]

Tex,

I read that article early on, when you and I first talked about psyllium many months ago. It's part of why I've tried repeatedly to go off it. The idea that the fiber is causing damage makes sense. So the dilemma for me at this point is this: does the benefit of the glucosides in the psyllium outweigh the continuing damage it's doing?

Do you know of any sources for those substances that might do less damage? You named a number of other sources earlier, but among those is almonds, which I can't tolerate, and others many on the list can't tolerate either. How is it that I can tolerate the psyllium but not the almonds?

I think the guessing game is one of the most difficult things about this for me. My dh is telling me to "quit doctoring yourself," and to be honest I'd love to have some "expert" just tell me what to do. That doesn't seem possible, though, so like everyone else here I just keep plugging away, trying to figure out what works. We all seem to have to do our own detective work, don't we?

Deanna

[tex]

How is it that I can tolerate the psyllium but not the almonds?

A glycoside is a molecule in which a sugar is bound to a non-carbohydrate functional group (group of atoms). There are many types of glycosides. All those foods that I named contain cyanogenic glycosides. Cyanogenic glycosides are bad news, because as the name infers, when the sugar part of the molecule is removed, toxic hydrogen cyanide is what remains. I really don't know much about this at all, and this is a huge field that I have never really explored, but I would guess that what you are looking for is flavonoid glycosides, such as rutin and quercitrin, which gut bacteria can convert to quercetin. I've never tried it, but if I recall correctly, you can buy quercetin as a supplement, ready to use. I'm pretty sure there are probably others available.

Tex

[Sue777]

In doing a search in here on "psyllium" I chose this thread to bring back to life since it seemed like the most recent one that discusses psyllium. Why was I searching for posts about psyllium? Because I had an idea that I'm tempted to experiment with.

When I was very young (probably ages 13 - 17) I suffered terribly with chronic diarrhea. It greatly interfered with my school days and my social life and I couldn't even eat lunch with my friends in the cafeteria. When I finally saw a doc about it he offered me 2 solutions (keep in mind, this was 1974 when they knew very little about any of this stuff). He told me that I had "spastic colon" and he could put me on tranquilizers (which I refused) or that I could eat raw, unprocessed bran every morning. He explained that I needed to work myself up to two tablespoons a day and that things would get much worse for a while but that after a few weeks they would get better. Being desperate, I tried it. And By George, he was right! I spent the next 10 years faithfully taking my 2 tablespoons of raw, unprocessed bran and (finally) led a normal digestive life! Then I got busy with marriage, having kids, etc. and stopped taking the bran but still did OK. That is, until I got diagnosed with CC 8 years ago. So while I sit here (almost 3 months now) analyziing, experimenting, evaluating, and patiently waiting for things to start improving, I have to wonder if perhaps I might need some fiber to help with this? Maybe the Asacol is going to work on "healing" my intestines but perhaps a little fiber would help bulk things up and slow things down? It was such a miracle for me when I was young I can't help but be tempted to try it again.

Now, here's where I did something spontaneous and stupid: when I got this brainstorm, I tried to think of what I had handy here in the office that was high in fiber that I could experiment with. I grabbed my almonds. It was interesting..... my stomach had been grumbling and growling (because I had just eaten a banana) and as soon as I chewed up 10 almonds, the grumbling and growling STOPPED. It's like I had given my gut something else to process and work on rather than my insides. I was elated and thought I might be onto something. The next morning (I slept through the whole night without having to get up and run for the bathroom!) I woke up and casually went to the bathroom and was THRILLED at the different consistency. Not anywhere close to a "Norman" but much more normal than what I'd seen in 3 months. So later that day I ate another 10-15 almonds. Still excited and optimistic, and then the sh/t hit the fan (pun intended). Not only was my D worse than ever, but it was more painful than ever. This continued for about 24 hours. Needless to say, I won't be eating any almonds today.

BUT... I still can't help but think I may be onto something. On the one hand it seems to make things better but on the other, makes things worse. The D is less urgent and less watery but the stomach pains are worse. Quite the choice, eh?

So I picked up a container of psyllium hydrophilic mucilloid at the pharmacy (something I'm supposed to mix in fluid and swallow) but am not going to experiment with it until I've done a lot more reading. And obviously I will only take a SMALL amount and then wait for a reaction. I figure a weekend is a good time to play with this and I'll let you know how it goes if I go for it.

Any thoughts?

Sue

[tex]

Hi Sue,

Yes, it's possible that fiber might "jolt" your digestive system out of the rut it's in. Over the years, more than a few members here have found that when nothing logical seems to work, doing something different, or even something illogical may work to put an end to a long, relentless reaction. IOW, sometimes a "shock" to jolt the system out of the rut it's in can bring remission when nothing else seems to work.

The theory here is that when the body is in a state of homeostasis, nothing is likely to change unless we force a change.

Intestinal mucosal cells are normally replaced about once a week. Fiber physically damages (tears) mucosal cells, so the body marks them for destruction and replacement, which can result in a faster replacement rate. Of course, this process results in more inflammation, more mucus production, etc., because inflammation is the first stage of healing. Unfortunately, with MC, the process gets stuck in the first stage, and therein lies the problem.

Good luck with your experiment.

Tex

[Sue777]

Thanks, Tex. I was preparing myself for people to post and say "Noooooooo - don't do it!" After reading your post I got up and opened the container to look at the stuff (I'm home for lunch) and then I mixed some with water and swallowed it. You would think I was drinking cyanide or something the way I approached it so carefully and fearfully! the bottle says that as a daily fiber supplement you should take a rounded teaspoon twice a day. So I took what is probably like an eight of a teaspoon. I'll wait and see if I notice anything this afternoon and may take another 1/8th tonight. Lord knows I don't want to put too much of anything in my system in case the results are disastrous.

Baby steps.... I'll keep you posted.

Sue