Introducing myself - questions

[manonash]

Hi all! I've really enjoyed reading this forum and am learning a lot from you.

My name is Shonda. I live in East Texas. I am in my late 30s. I'm unsure if I have MC or not, but I think it is a possibility. I have an appt with a GI doc next week to schedule a colonoscopy. I actually had an appt for a colonoscopy with biopsies earlier this year and things happened and it didn't happen. I'm now ready to try this again.

I've had health problems for 11yrs now. I didn't notice the bowel connection until later. I must say I'm embarrassed though; I figured out the bowel connection about 7yrs ago, but didn't make a gastro appt until earlier this year. I have not had great experiences with physicians in the past, so I put off going to a huge degree. I have been trying to figure this out myself for years now. I'm a terrible researcher though, so it takes me a while. Not to mention the horrible brain fog that surrounds me part of that time. When I was looking stuff up a while ago, I wrote of MC as a possiblity, because I don't have watery D.

Symptom chronology:
1997 - peripheral neuropathy chest - left side only. Oral lichenoid lesions.
2001 - neuropathy left thigh, carbohydrates gave me a headache within minutes of eating them (especially wheat now that I think about it). Starting to notice whole food chunks in my stool. IBS-like symptoms. A couple of really early miscarriages.
2002ish - muscle twitching, pain in my lower left abdomen that sometimes radiated thru my pelvis and down my leg.
2003/4 - reduction in neurological pain when eating Schwarzbein principle (regulating carbs). Almost complete remission on SCD -- great BMs, ovulate right on time (I was charting my cycles, so I knew the exact day most months), painless periods, all symptoms except some mild food sensitivites gone.
2005 - got pregnant again, and with the help of progesterone supp. first trimester, had a pretty good pregnancy. I had intended to stay on the SCD my whole pregnancy, but I flared really badly and had heartburn a lot and the complex carb craving got the best of me and I caved. For the last two trimesters, I ate anything I wanted and stayed in complete remission. I have OCD and even it was better. My only symptom was extreme fatigue, but I chalked that up to being pregnant.
2006-early 2008 - continued to eat poorly, and didn't have too much problem. My main symptom at that point was joint pain (knees, hips, shoulders, elbows) that seemed to be worse when I was consuming a lot of wheat.
early 2008 - started having the lower left abdomen pain again. Soon after that I got my menstrual cycles back (took two years).
Since getting my cycles back, I've been getting progressively worse up to my pre-SCD symptoms.

In 2007, I tried going back on the SCD again due to the joint pain. It helped, and I felt better, but not as well as I felt the first time I did it. The first time I went on the SCD, I felt amazing in 3 days. I was on it 9 months again the second time and never did feel as good as the first time. I stopped it when I was waking up in the middle of the night hungry with indigestion. I think I have adrenal fatigue and was thinking that that would fair better on complex carbs.

Now I feel like I'm stuck with this one. Simple carbs make my gut feel better and make me feel better neurologically, but do a number on me with the indigestion and hunger (thus not good on the adrenals); the complex carbs make my adrenals a little happier, but do a number on my gut. Low carb makes me feel good neurologically, but fatigues me badly. I used to consistently weight 115 lbs. I have now gone up to 125 (got up to 130 a few weeks ago), but I had to binge on huge amounts of sugar for weeks to do that. I've been off the sugar for 3wks, and am down to 125.

There is no doubt to me that I have multiple food sensitivies.

I find it interesting that I'm worse when estrogen is dominant during my menstrual cycles, and better when progesterone is dominant.

Not much labwork to go on right now either. I had a slightly elevated histamine level early this year, and a celiac panel (which was no good because I was off gluten for 9months at the time). Even though I was off gluten my results were:
endomesial IgA <1.10
gliadin IgG 1.6
gliadin IgA 1.3
reticulin IgA neg
anti -tTg IgA 0.8
What my thinking was, is that after being GF for 9 months I shouldn't have any antibody should I? Besides, I'm not sure I understand having to reach certain levels to be labeled. I would think any level of antibody would be a bad thing.a` Is it that certain levels have to be reached before you find villous flattening?

I'm wanting to do the Enterolab testing.

I'm also trying to find out what role mercury poisoning could play in intestinal problems. I have 15 amalgams (8 are crowned under nickel based crowns which makes leaching worse) that I have had for 3/4 of my life. Some have been replaced over the years, and I started getting them crowned in college. I had the last of the crowns done 1997ish. I need to find that out exactly. I strongly suspect mercury is playing a role in this problem.


Sorry if this is too long. I know I can learn a lot from you all, whether it turns out I have MC or not. Thanks for listening.

[manonash]

Oh, I forgot to mention family history. My mother had her gallbladder removed for lots of stones in her 40s, and had non-polyp colon cancer (napkin ring) in her late 50s. Makes me feel even dumber for not having a colonoscopy sooner.

I also finally called my dentist to get a timeline on dental work. I hadn't had anything done for several years, then in Jan of 1997, I had an old filling crowned. Then another in July 1998, and another in December 1999. The neuropathy began in 1997 and gradually worsened until I also got it in my leg. Interesting.

[JLH]

Shonda. I'm glad you found us. Tex will be along soon to give you his opinion.

Yes, we recommend EL, if you can afford it.

I went gluten free after finding this site and had great success for a while. Then I had the rest of EL testing done and found that I had soy as well as the previously diagnosed gluten and casein intolerances.

[tex]

Hi Shonda,

Welcome to our internet family. You've got quite a history of issues, but pretty much all of your symptoms, (including the miscarriages), are consistent with either MC, or celiac disease, (or both). It really doesn't make much difference which you have, from a treatment standpoint, because the same treatment will work for both, (although most GI docs will deny that you can control the symptoms of MC with diet alone). Fortunately, most of us didn't go to medical school, so we never learned that it's impossible to control MC by diet alone.

I wrote of MC as a possiblity, because I don't have watery D.

Not all of us have watery D, (secretory D), and, in fact, some of us have C, (Constipation). Some of us have alternating D and C, (me for example). The undigested chunks of food in the toilet are a pretty sure indication of either celiac disease, or MC.

What my thinking was, is that after being GF for 9 months I shouldn't have any antibody should I? Besides, I'm not sure I understand having to reach certain levels to be labeled. I would think any level of antibody would be a bad thing.a` Is it that certain levels have to be reached before you find villous flattening?

No, as far as I am aware, you will always have non-zero results for these tests. Various labs use various "normal" ranges, so you have to judge the test results by that particular lab's specified ranges. Unless you actually have "full-blown" celiac disease, you will almost always test negative to the classic celiac blood tests, (IOW, these tests result in a lot of false negatives). Therefore, you can have celiac disease, but if it is not fully developed, your test results will usually be negative. Also, even though many of us with MC are just as gluten sensitive as celiacs, we always test negative to the celiac blood tests, (unless we also have celiac disease, in addition to MC). The stool tests, however, are several orders of magnitude more sensitive than the blood tests, (since the antibodies are produced in the intestines), so they are very accurate for detecting food intolerances.

I find it interesting that I'm worse when estrogen is dominant during my menstrual cycles, and better when progesterone is dominant.

You're very observant - that's exactly what happens. Most patients with MC find that their symptoms are put on hold during pregnancy, (when progesterone is at a high level), but symptoms return after lactation ceases, (when progesterone levels begin to return to normal).

The reason why the SCD diet does not completely eliminate the symptoms for most of us is because it allows dairy products, and most of us are not only gluten sensitive, but also sensitive to casein, (the primary protein in milk). And, as Joan mentioned, about half of us are also sensitive to soy, and a few are sensitive to various other food ingredients, depending on their genes, and possibly other factors.

Gallbladder disease is a common problem for people with other autoimmune diseases, such as MC. Gluten sensitivity also causes some patients to have weak tooth enamel, which leads to all sorts of problems with the teeth. There has been a lot of discussion about whether or not the mercury in fillings is as big a hazard as some people feel it is, but I'm not aware that any research has been done to conclusively prove anything. I have a hunch that some people are more sensitive to it than others, and whatever the case, it certainly couldn't be a good thing to have in our mouths.

Again, welcome aboard. You've been suffering with this for a long time - it's high time for you to get your life back.

Tex

[G'ma Mary]

Shonda;

Welcome to our family!!!

Boy, you have quite a history, and lots of insight into it. I admire you for all the work you've done on your own illness.

At this point, I don't feel I can be of much help to you, or offer you any suggestions. I hope you will remain here, as I believe you will be a great asset to us, and you will also continue to learn from us.

Great to have you

G'ma Mary

[manonash]

Thanks for all your "Welcomes!" I know it may sound crazy, but I find myself hoping a biopsy does show something so I then know what I need to do about it.

Thanks Tex! You are a real wealth of information. I still don't understand the whole spectrum thing very well. So are supposed to create antibodies to proteins in our foods, but just at low levels, or is any amount of antibody a problem? Not just to wheat, but anything.

That explains a lot about the SCD. I loved feeling better on it, but never did quite fully recover and that may be the reason. It was also hard I thought. It wasn't really, but the preparations for travel and eating with family were difficult for sure. And, the cravings were hard too. I never did get past them like some claim to.

I had a bone density test today and it was totally normal. I found that surprising. I been nursing my daughter for 2 1/2 yrs now and my diet has been reallllly bad and my estrogen pretty low until the past few months. I certainly haven't been choking down the calcium rich foods. I also haven't been taking a supplement either. A couple of years before I got pg with my daughter, I had an "intracellular WBC test" done and it said my calcium was really low. I took calcium for a while and the test normalized before I got pg. I'm a little confused, as all the things I've considered that could be causing my ills cause bone thinning. Maybe it takes longer for that to show up?

[tex]

I know it may sound crazy, but I find myself hoping a biopsy does show something so I then know what I need to do about it.

If you think that sounds crazy, consider this: After I got tired of the uncontrollable D, and finally caved in and went to see my doctor, his initial diagnosis was colon cancer, and you know what? As crazy as it sounds, for some reason or other, I was relieved, because, just as you said, at least I had a diagnosis, and knew what was ahead, (or at least, I thought I knew - it turned out that he was wrong, thank goodness).

In simple terms, unless a reaction is actually underway, most of those antibodies are not necessarily food-specific, they're just an indication that the immune system is on the job, and out there looking for trouble, sort of like having armed guards standing around, just in case trouble erupts. IOW, their presence does not necessarily mean that anything is wrong. If trouble does erupt, though, then antibody production rapidly increases, and that's when test results will exceed certain threshold limits, and thereby indicate a positive test result.

I think that the biggest risk of osteoporosis in this country comes from untreated gluten sensitivity. If you have been following a GF diet most of the time, then you are taking care of that risk. The need for calcium supplements is probably oversold, because if you look at the statistics, the countries where the citizens drink the most milk, have the highest rates of osteoporosis, and the countries where people drink the least amount of milk, have the lowest rates of osteoporosis, on the average. Obviously, there's much more to it than just calcium intake.

Tex

[manonash]

I guess what I'm asking about the antibodies, is when you do have antibodies to a particular food, is that normal if the levels are below a certain point? I would think you shouldn't develop antibodies to a food in the first place, because anytime you get exposed to the food after that you would react wouldn't you?

Also, while I'm thinking about Abs, do different ones tend to hang around the rest of your life and some are more transient? Like will the IgG/IgE type allergies disappear if you abstain from that food long enough? My mom used to have some IgE allergies, and upon abstaining and retesting years later, she didn't react any more upon retesting. If it's IgA does it tend to stay with you? Now my head really is spinning LOL.

I haven't been GF most of the time. I've only been gluten free for a total of 18months combined. But, I was in a low estrogen state for a period of about 2yrs while I had no menstrual cycle, and a progesterone dominant one while I was pregnant, so that would have helped. I was also taking supplements up until about 2 1/2 yrs ago, although I'm not sure how much help they actually are. So for most of the past 3 1/2 yrs, my inflammation levels have been lower than they are now that I'm cycling again. I'm not currently GF, but I want to stop soon. I plan on having the biopsies done soon, so I was just trying to keep my exposure going because I was thinking the diagnosis would be more accurate. I'm probably wrong about though. I've started having gastritis type symptoms over the past 3wks or so, so I don't want to wait much longer if I do. Seems gastritis and gastroparesis have some link to celiac and GS?

[tex]

Shonda,

Okay, let's try a different approach. The mechanism involved with antibody production and utilization is a fairly complex, (detailed), phenomenon, (as I'm sure you're well aware), so this post will just touch on certain relevant aspects of a huge body of information, but hopefully, it will shed some light on your question. First, here's a crash course on certain basic aspects of antibody production that relate to what you are asking:

Antibodies are a class of immunological proteins (immunoglobulins) produced by B-cells, and are antigen-specific.

An antigen is defined as a substance that can be bound by an antibody molecule through its antigen-binding sites, also called epitopes.
Many substances can be, and are known to be, antigenic.

Antigenic substances include:

- Proteins
- Nucleic acids: DNA, RNA
- Carbohydrates or sugar groups
- Lipids
- Small Chemical Groups
- Peptides (10-15 amino acids long)

Obviously, for our purposes, we are interested only in the proteins. Note that smaller chains of amino acids, (less than 10-15), are not normally detected as antigens.

B cells develop from stem cells in the bone marrow. At the youngest stages in the bone marrow, these cells develop antigen-specific surface antibodies, (IgM and IgD). The naive B cells then enter the circulation, and travel in the blood and lymphatic system, through tissue and lymphoid organs. These B cells are called naive, because at this point, they have not yet encountered any antigens.

Each and every B cell, (and there are many millions in the body at any given time), has a different antibody on its surface. In addition, once a B cell makes surface IgM, it can then make a different class of antibody, (a class switch), but all of the antibodies made by that cell, will recognize the same antigen.

Unless these naive B cells encounter an antigen recognized by their surface antibodies, they will die within a few days. Typically, there are many, (more than 90%), that circulate their entire life span without encountering any antigens.

Hopefully, that illustrates why you are never likely to get a zero antibody level test result, for the various classes of antibodies.

During early development, one's body has pre-selected and eliminated every single cell that recognizes and produces antibodies against one's self or "self" proteins/molecules. Often, this process is flawed, or it becomes flawed later in life, and manifests as auto-immunity, where the body attacks itself.

There are five classes of antibodies:

IgM antibody isotype - Mainly found in the blood, and is involved in complement fixation reaction.

IgA antibody isotype - Secreted across epithelial surfaces into the lumen of the gut, intestines, and mammary glands.

(This is an important antibody as humans can secrete from 5 - 15 grams of IgA antibody per day!)

IgG antibody isotype - Is an antibody which is transported across the placenta, into the bloodstream of the fetus, and is capable of neutralizing toxins, and preventing infections, by blocking bacterial and viral entry into cells.

IgE antibody isotype - is involved in ALLERGIC reactions.

IgD antibody isotype - is found on the surface of most B lymphocytes just like IgM. So far, the function of this antibody is unknown but it has been suggested that it acts as an antigen receptor and that it is needed for B cell activation. A very small amount of IgD is secreted, and its functions as a secreted antibody are unclear.

Here is a table listing typical normal levels of some of these antibodies. As you can see, after about six months of age, these values are never likely to be zero, and, in fact, they increase, as we age.

http://pim.medicine.dal.ca/ablev.htm

Tex

[manonash]

Ok, got that a level of say IgG will never be zero, but shouldn't IgG to gliadin be zero, since that is antigen specific and we would have to have encountered the protein in order to make antibody against it? Does the immune system encounter that protein even in a non-leaky gut? If so, does it only become a problem when the reaction is large enough to create an inflammatory response?

I'll dig deeper into all this when my brain fog improves. I can't think straight sometimes.

[tex]

But our immune systems have encountered the protein, that is the problem, and once we begin to produce those antibodies, they will be there forever, unless maybe you never, ever ingest even the tiniest speck of gluten, (which is virtually impossible in today's world). Bear in mind that the reaction occurs in the epithelium of the intestine, not in the blood.

Enterolab can reliably detect gliadin antibodies in the stool, (which means they are being produced in the intestines), up to a full year after gluten has been totally withdrawn from the diet. If those antibodies can be detected in the lumen, then there are certainly a small percentage of them that will show up in the blood, (though not enough to yield a positive diagnosis). So, it is guaranteed that gliadin antibodies will be present for at least a year after you stop ingesting gluten. Unless you live in the wilderness, and eat absolutely no processed foods, you will probably accidentally ingest enough gluten at various times during the year, to guarantee that you will maintain some level of antigliadin antibodies. There is virtually no such thing as processed food, that is 100% gluten free. Low-gluten, yes - gluten-free, no.

If you can keep your gluten intake below whatever your threshold happens to be, for triggering a reaction, then your histology will resolve, and you can get a "clean" biopsy report, but I seriously doubt that you will ever be able to push antigliadin antibody production down to zero. In reality, (mathematically speaking), "zero" is an unattainable goal. A zero reading for a test, simply means that the test was not sufficiently sensitive to detect the low levels of substance that were present. Trust me, zero does not exist, except as an abstract concept. "Zero" is an arbitrary assignment of "convenience", that does not exist in the mathematical or engineering world. Measurements of items of this type can only approach zero, they can never actually be zero.

Tex

[manonash]

I am learning so much from this, thank you! So if you develop an allergic type immune reaction to a food, will the allergy sometimes resolve from stopping the leaky gut because the immune system doesn't see the offender in it's less digested form? In other words, are the antibodies still hanging out in the blood stream and the layer of the gut it's supposed to be in, but not getting triggered to make more because the offending protein isn't making contact? I feel like I am making no sense. And to think, I had an immunology course in college . That has been some time ago though, and my teacher wasn't the best for sure. I loved the class, but found it so complex.

Sorry if I'm asking too many questions. I just find this all so fascinating and want to learn as much as I can about it, but I'm starting from a fairly beginner amount of information. Thanks again!


I'm feeling the urge to stop the gluten right now. Will I mess anything up with my biopsy if I do? I've got a blood celiac panel already sent off, but want to do the fecal test. I can do the fecal test even for quite a while after dropping gluten I think. I've developed gastris and possibly some mild gastroparesis symptoms over the past 3wks, and want to do something dietary-wise to try to help. Today I've just been slowly eating small amounts of homemade beef (grass fed) soup with a little rice and carrots. My stomach seems to be happier with this and I don't feel so full now.

It's funny you were mentioning living in the wilderness basically. On SCD, that's pretty much how I felt. But I imagine I was able to get trace amounts of gluten in the whole raw bulk stuff I would get at the health food store just because of the other things it was stored near in the store, and the like. I've had this fantasy that other than our meat, I would grow all we ate and eat seasonal and local that way. Maybe someday huh .

[tex]

I'm not sure if LGS would make a lot of difference in serum antibody levels, but it might. The thing is, though, MC reactions go hand in hand with LGS, and, in fact, I suspect that my MC was caused by LGS. I, too, was a sugar junkie for many years, and I'm pretty sure that's what triggered the LGS.

Are you familiar with the research of Dr. Alessio Fasano, of the University of Maryland? He is currently testing a pill to suppress the production of zonulin in the body, (zonulin is what triggers the opening of the tight junctions between the cells of the epithelia, which results in LGS). If he gets FDA approval, this pill should allow celiacs to eat gluten without problems. The question for MCers, is "how will this affect the inflammation in the intestines?" Without LGS, we would be able to avoid all the joint pain, muscle aches, headaches, brain fog, etc., but the question is whether or not the inflammation will subside, and thereby halt the D. Presumably, some patients with MC do not have LGS, because they don't have these peripheral issues, (only D), and that implies that inflammation would still be a problem, even without LGS.

If you were to cut out gluten today, it probably wouldn't materially affect your biopsy next week, but after a few weeks, it would probably begin to have an effect. The Enterolab tests results will be valid for up to a year after you cut out gluten, so you have much more leeway with those tests.

Hmmmmmm. I forgot to address the gastritis and gastroparesis issues that you mentioned earlier. Some of us do indeed have those issues when reacting. At times, my digestive system seemed to just completely shut down, (as if there were a blockage), and then it would start up again, a day or so later. In fact, I had that happen to me a month or so ago, when I had what I thought was a virus, but I couldn't be sure, it could have been a reaction from an unknown cause, instead. On that particular occasion, it was very obvious when it suddenly began working, again.

Yep, our grandparents had the right idea. Living on a farm, mine grew virtually all their own food needs, including all the meat.

Tex

[manonash]

I think my biopies will be within a couple of weeks. My consultation is next week and I'll try to schedule it quickly after that. I'm not sure I can swing being completely gluten free by then anyway. I'm trying, but gotta get my pantry prepared.

The heavy feeling stomach is better today.

I feel so exhausted. My muscles ache. My gut feels mad. I'm not sure how to describe it; it's more like dull localized pains which could be cramping, but I'm not sure. It's not growling like it should. Argggg. Would digestive enzymes potentially be helpful?

I'm hoping the GI will just do an endoscopy at the same time. Also, I'm still doing some looking about whether to ask for a sigmoid instead, but what I found suggests they use air for it too, so is there really any difference air pressure wise? It seems there is a small correlation between post colonoscopy perforation in collagenous colitis patients; that's kinda scary. They were talking about something called "Cat scratch colon" sometimes occuring. Sometimes "research" can make me really trigger obsession for me.

[tex]

I tried one enzyme capsule one time, and within about an hour, I was sick as a dog. That was promptly followed by two or three sessions of vomiting up some kind of vile, green-looking stuff, about every couple of hours, and after that, I had a couple of sessions of dry heaves, on about the same schedule. I still felt so bad the next day, that I was afraid to eat anything. I've never gotten up the nerve to try any more enzymes, since then. YMMV.

I doubt that there is much difference in the "air pressure" used during those exams. Theoretically, the doctor should only use enough air to expand the colon to roughly it's normal shape.

"Cat scratch colon" probably refers to the longitudinal tears in the epithelium, that Dr. Fine refers to. Doesn't it? One reason why they are seldom noticed during a sigmoidoscopy, may be because "cat scratch colon" usually occurs in the ascending colon, (the end near the cecum), and that area is not visible during a sigmoidoscopy.

Tex