Please Learn Some Manners

It’s not like you are my friend, asking the question because you care about me. It’s because you are so freaked out about someone like me that you don’t know what else to do other than say what naturally falls out of your mouth. Funny. I feel like anyone else until I run into someone like you.

You are the grocery store checker who when I tell you that all these groceries are together, I had to leave space where there is white powder on your conveyor belt because it might be flour and I’m allergic to that and also I can’t have even a smidgen of gluten in my kitchen, just has to say, not with a note of curiosity, but with a shocked tone of voice, “You’re allergic to flour? What do you eat?!” Would you say to a person in a wheelchair, “Gee. How do you get out of bed every day and get into that chair? How do you ever have any fun?” Of course you wouldn’t. That would be rude. Why do you think it’s OK to comment on any other health issue that a person has? And why don’t you clean off the conveyor belt so the next person who comes along with my same problem (there are more of us than you probably think!), won’t have to skip the white powdery part?

There have been times when the entire belt was dirty and I had to ask the checker to please clean it before I could put my groceries on it. I think grocery checkers ought to know that some people have these issues so they can keep the belt clean. After yet another rude checker today, I wonder if rather than go into an explanation in order to try to educate, which may just be a colossal waste of time and energy, I ought to just tell them their question is a bit rude and why don’t they clean off that conveyor belt? Maybe I ought to just ask them to clean the belt with no explanation. But I think that’s just a self-protective move and fails to educate the ones who are polite and teachable. Maybe writing this will help? I try not to let ignorance and rudeness get to me, but after about three years of this, it’s really getting old.

“You Most Likely Have Celiac”

That’s what the nurse practitioner said. She went over test results with me and then said, “You most likely have Celiac.” I’m not sure what she expected, but I expected the results we got. There are no antibodies to gluten in my bloodstream, which makes sense because I have not been eating gluten. I even had to quit eating things like almonds and “gluten-free” pasta that had the words “Processed in a facility that also processes wheat” on the package. I also expected to be told that I have genetic markers for Celiac; the test said I do. You can’t have Celiac without having genetic markers, but you can have the markers and not develop the disease. Celiac is an autoimmune disease, by the way. I expected to be told I have the markers because I read that bone loss occurs with Celiac and not with gluten sensitivity, and I have bone loss (osteopenia in my early 40s and now osteoporosis). Also, I had absence seizures when I was a kid, and those can be associated with Celiac. Added to that, I have thyroid antibodies. In Celiac disease, the body can confuse thyroid proteins for gluten proteins, go nuts and attack the thyroid. Those are some of the reasons…so looking at my symptoms, my medical history and my medical family tree, this was no surprise at all.

There are people who have Celiac, but the antibodies are not showing up in their blood tests. (This is pretty technical, but it does explain a bit about that.) It’s possible that if I were to do a gluten challenge followed by the blood test, I might have some antibodies in my bloodstream. But, maybe not. They are produced in the small intestine, and sometimes they just hang out there and there aren’t enough to measure in the bloodstream. I’m not going to do a gluten challenge. I’m so sensitive to that stuff that I’ve had to stop eating anything that has been anywhere near gluten or wheat. No gluten-free deli meat that is sliced on the same machine as the products that contain gluten. Nothing from a facility that is not totally wheat-free.

It’s only been about a month or so since I made the discovery that eating cross-contaminated food is probably why I’m having the symptoms I’ve been having. Candida overgrowth and gluten intolerance can cause the same symptoms. Since I have both conditions, there was some confusion. It takes a while to get the body back in order, but it’s lurching along toward better.

In the meantime, I’m gaining some weight back. I had a problem with weight loss last year before coming off gluten, then it stabilized when I went gluten-free. Earlier this year, I started losing weight again, probably because of the cross-contaminated food I was eating. Now that I’m not eating those things, and I’m following the advice of my dietitian, I’m gaining weight.

So, what’s next? I’ll be going to a gastro doc because I’m curious about probable damage to my small intestine, and I want to check on that. I’ve learned that different areas of the small intestine absorb different nutrients. The first part to show damage in Celiac is usually where nutrients that bones need are absorbed. That would explain my early bone loss. Another part absorbs cholesterol. If that is damaged, that would explain my fantastic better-than-ever cholesterol numbers on my last two blood tests. Also, maybe the doctor will have some advice concerning yeast over-growth. Celiac damage creates a good environment for yeast to grow, and that may be why I’m having such a difficult time with it. This is all speculation, of course, as to what is going on in there. We won’t know anything until I see the doctor.

Folks sometimes ask how I feel. Well, it’s been a few weeks since I felt so bad I had to remind  myself that I’m not going to die, so I’m better. I’m still having some problems like acid reflux, and my hair hasn’t stopped falling out yet (again), so there is room for improvement. Someone told me a while back that I was eating something that I shouldn’t have been eating for decades, and it takes more than a few weeks for the body to recuperate. Oh, how right he was, that fellow who told me that. I’ll get there though. Not sure where ‘There’ is, it’s different for everybody, but I’ve had days lately where I felt not just OK, but really good, so I’m expecting to be just fine.

Talking With A Dietitian

Because of my skinniness and gluten intolerance, I saw a dietitian today. If you are gluten intolerant, I highly recommend seeing a nutritionist or a dietitian. One thing I’m so happy about is that I wasn’t told not to eat anything that I’m already eating! Too many ‘nos’ make me crazy and I’ve had enough of those lately. So, I got advice to add more meat so I can build muscle, to do some weight-bearing exercise every couple of days, to try dairy again (and hopefully I won’t get a rash from it), and to make sure I’m getting enough complex carbohydrates. Some days I have gotten enough carbs, and some days I haven’t. I am also supposed to weigh myself once a week, then email or call her in a couple of weeks, and let her know what the scales have shown. She expects me to have gained a pound in the next two weeks. She wants to keep it slow so what is gained will be muscle because I need that more than I need fat right now. I’ll also be getting my thyroid checked in a couple of weeks. She and I aren’t so sure that’s not messed up, too.

My dietitian (I like her advice, so I’m claiming her as my dietitian!) has a daughter who has Celiac, so she knows about this stuff, not just from the textbooks, but from a bit of experience. I’ve got to tell you, I was thrilled to see how much she knows.  She also has the knowledge to deal with Candidiasis, and when I talked about the skin problems and such that I’ve had, she understood what to do about carbs so that I’ll get enough of the right kinds to feed myself and I won’t be feeding yeast.

She wanted to make sure that I know about more than just what I need to do to gain weight, so we talked about gluten intolerance, too. There is a lot to know about hidden sources of gluten, and for the sake of getting the info out, here are a few things to be aware of:

If you eat a meal at a family get-together, or a club or church activity, and some dishes have gluten in them, make sure you go first in line. If someone mixes up the spoons between dishes, the gluten-free foods will be contaminated. Also, if someone picks up a roll or a slice of bread and lets it pass over a pot of veggies, or some other gluten-free food, and crumbs drop in the pot, it’s contaminated.

Don’t lick envelopes! The glue on them is made from wheat.

Check your medications and supplements for hidden gluten. You have to make sure that any starches they may contain come from corn and not wheat. Make sure your pharmacist knows you have to avoid gluten. One good website for checking over the counter, as well as prescription medicine, is Gluten Free Drugs. My doctor and nurse practitioner use this site and so do I.

Also, I get email from Jane Anderson at About.com. She writes a lot of good articles concerning gluten intolerance issues.

Cecelia’s Marketplace has a great little book which lists tens of thousands of gluten-free products. I take it everywhere I go!

Not only food, but also personal care products such as shampoo and makeup need to be checked to make sure they are gluten-free. Yes, it probably has to come in contact with your digestive system to cause a problem, but if you put lotion on your skin that has something in it, say, vitamin E that is derived from wheat, and you touch your skin and then touch your lips, you can be glutened.

OH…make sure there is no gluten on their lips before you kiss your sweetie. If you eat a gluten-free sandwich, and your sweetie has a sandwich made with bread that has gluten, and you kiss after eating, you will be glutened. I was getting my grandson out of his high chair once and I started kissing his sweet little cheeks, then realized he had cereal all over his face. Yikes! I washed my mouth off really quickly.

The only other advice I’m going to give is, again, see a dietitian or a nutritionist if you are gluten intolerant, plus one more thing. My dietitian told me, and I’m passing this on because it applies to anyone with gluten intolerance, not to let it bother you if people think you are neurotic about avoiding gluten. She said things just aren’t real to some people unless they have experienced it for themselves. Y’all take care.

My Latest Health Challenges

Twenty-five years ago I couldn’t believe I was hearing the things I heard women discuss in the beauty shop right there in front of God and strangers and everybody. They discussed their bladders like they were discussing their hair, which is what I thought we were all there for. Well, all I’m going to say about mine is that it gets to go to a urologist and the antibiotic I had to take a few months ago and a couple of times since has caused some problems.

We have discovered that I’ve had Candida over-growth for years and I didn’t know that; I’d never mentioned the symptoms I was having to a doctor. We also didn’t know I was gluten intolerant until last fall when I went to a new doctor. A couple of months after coming off gluten I was really beginning to feel great. A month later I had an amazing energy level. I went from wondering how on earth people got up out of bed and went to work every day, to just about going into orbit over the joy of how good I felt and how I could do so much more and do it with energy. I won’t discuss the private stuff, but my hair (the thing I thought we were in the beauty shop for and which had thinned considerably over the past few years because of gluten intolerance interfering with absorption of nutrients) started growing back. I even have hair on my legs again; I thought it was gone because of age. I guess I’m not as old as I felt. Or, maybe getting old isn’t supposed to take one’s energy away? God willing, I expect I’ll find that out one day.

At this point, with my newly unscrambled brain, I went to the doctor about these other symptoms. They were mild at the time. In checking things out it was discovered that I had a bladder problem and had to take the antibiotic – the one that started this mess. After two days of the medicine, my belly bloated back up again like it used to be and the real trouble began. Oh, and yes, I was taking a probiotic , so who knows how bad it would have been otherwise?

In the meantime, we tried a variety of medications to clear up the Candida. Nothing was working; it only helped until I came to the end of the prescription, then my nurse practitioner would try something else. I was also taking supplements that I showed to her and had her approval. There is some good stuff out there for this, but I don’t want to take things like that without medical advice from someone with a degree. There are a variety of yeast (Candida) diets out there and I picked a pretty strict one to follow, again letting my nurse practitioner know what I was doing.

I’m not sure how long I was on the diet before I noticed an acidic smell that I’d never smelled before and it was coming from me. I thought it was because of one of the supplements and I quit taking it. I should have gone to my NP and told her and let her decide what it might be. I guess it’s hard to think straight when you’re hungry. I’d been on the diet for a month and when I started adding foods back, I kinda’ went nuts on biscuits and other carbs. I needed some energy! I had no stamina. I quit the supplement and added back carbs at the same time and didn’t know what I know now.

What I know now is that the smell was not from the supplements. It was from going on such a low carb diet. My body was going after muscle after it ate up all the fat I had. When I dropped under 100 pounds I sort of freaked out. I didn’t eat biscuits all day, but I sure have been eating and eating and trying not to spend too many of those calories.

I talked to my NP yesterday about the bladder problem and the yeast problem. That is how I get to go to a urologist and also, (YEA!) a nutritionist so we can build me back up. Most likely the yeast has messed up my intestines so much that I’m not absorbing enough of what I’m eating and that is why my hair is falling out again. A nutritionist can help me get the balance right so the Candida can starve instead of me starving, and also get me on the right supplements to build my muscles back up. I want to be buff.

So why, if I’m so private that I won’t discuss this in a beauty shop, am I writing about it here? Well, I’m not telling you details, am I? Nope. Not this shy violet. I’m telling you enough so that you will know that if you think you may have a gluten problem, don’t wait too long to get it checked out. Yeast over-growth is common with folks who are gluten intolerant. The other thing I want you to know is that if you are trying to treat a yeast problem, or gluten either for that matter, don’t try to doctor yourself. Even though there is a lot of info and there are a variety of products to help, it really does take medical supervision. You can see from what I’ve written how dicey this can be, and I’ve had supervision. And don’t pay too much attention to what you hear in the beauty shop.

Just a note about the supplement: Early last month, I emailed the company and asked if anyone had ever reported such a problem and they said they had never heard of it. I started taking it again and the only times I’ve smelled the smell is when I’ve dropped too low on carbs. Oh, and I’ve gained back a couple of pounds the past few weeks, so I’m over 100 now.

ADDENDUM: I’ve been reminded if you are gluten intolerant, you can’t eat it for decades and have everything be OK in a week;  it can take 3-5 years for gluten damage to heal. I’ve also read that sometimes, it doesn’t completely heal. Whether the problem is gluten damage or Candida damage or both, or whatever, I’m sure looking forward to getting well.

SECOND ADDENDUM: It was discovered that I had been eating almonds and almond butter that were “processed in a facility that also processes wheat.” This is why my hair was falling out again; it wasn’t caused from yeast damage. Once I quit eating those things and started watching labels for things processed near wheat and eliminating those things, my hair started growing back. I now have hair that is three different lengths because of gluten problems. Also, my hormones have been corrected, along with DHEA and I’m gaining weight back. Please do see a doctor if you are having similar problems. If you get one that doesn’t listen to you, or tells you that your tests are clear and you don’t have a gluten problem, then maybe they don’t understand non-Celiac gluten sensitivity. I’ve heard that some don’t, so find one who does and get some help.

From Tears to Joy

A while back I wrote about how upsetting it has been to be losing weight to the point of looking like a contestant on Survivor at the end of the contest. I’m getting used to being skinny. I seem to have leveled out at just a hair or two above 100 pounds. I guess that will be fine. Like I said, I’m getting used to it.

The other things that are happening are fantabulous. (I had to use my special made up word that I use for the very best things.) My hair is growing back. For years it had been getting thinner, especially last year. The lady who was cutting it even told me I sure was “losing a lot of hair.” I now have new hair that is about this long!

My eyebrows have also gotten thicker. I was talking to my nurse practitioner about these things today after I showed her my thumbnail. For the past few years my right thumbnail has had weird squiggly lines on it. They looked like wrinkles and covered half the nail. It was growing out from the nail bed like that. I knew it was something medical when I first noticed it, but I didn’t know what and I never said anything to anybody about it. Last week I noticed that it’s beginning to look like a normal nail. There is a small area with fewer squiggles and then it gets smooth. My nurse practitioner said it was squiggly because I had a deficiency of something when I was eating gluten and didn’t know I shouldn’t be. That’s also why my hair was falling out and my eyebrows had thinned out.

She said our bodies take the nutrients to our important (to keep us alive important) body organs and the skin, hair and nails get what’s left. They are also the fastest to recover, so it doesn’t hurt them to do without like it would other parts of us. Other things can recover, too. It just takes longer.

Another cool thing, and this is the one that put me over the top here and has me writing when I would normally be asleep because it’s after midnight, is this. I’ve had trouble keeping up with my flower beds and garden the past few years. I wondered why that was, because when we home schooled our sons it all looked much better, and I was a lot busier then than I am now. When I thought about it I remembered that I worked in the yard in the evening back then. I haven’t been able to do that the past few years because I couldn’t bend at all after I ate. A doctor told me years and years ago that I probably had a hiatal hernia and so I just thought that was why I got to where I couldn’t bend. I figured it bothered me more as I was getting older.

Well, yesterday evening after supper, I picked up my clippers and went outside to just walk around and piddle a bit with clipping small things and maybe dead-heading a few flowers. I noticed I could bend and it didn’t cause any problems. Now, I wouldn’t go outside after supper and stand on my head in the flower beds, but I can do a little bit of yard work. So, today I went out and cut some small branches that were broken during a thunderstorm this afternoon. I also dug out part of the ditch that needed it and took the dirt to the side yard and filled in holes that an armadillo dug.

It’s so much more comfortable outside in the evening. Mornings are more humid, and by the time the dew is dry and you can do something out there, it’s getting plumb hot. So, as long as I don’t stand on my head in a flower bed, I can now work in my yard at the end of the day. And that, dear readers, is a great time to do something that is so pleasant and relaxing.

ADDENDUM (June 8, 2012): I was so excited that I didn’t make it clear the reason I can work in the yard after supper is that I’m not having stomach problems caused from gluten any more! I’m still excited.

SECOND ADDENDUM (January 13, 2014): Sorry to keep adding to this post, but things just aren’t totally resolved, I don’t think. I still weigh barely over 100 pounds and I eat more than my husband. In years past, if I’d eaten like I am now I’d put on some weight. The hair on my legs went away again, then came back, then went away. The hair on my arms turned a funny color and some of it broke off last year. Reflux became a problem again. Osteopenia is now osteoporosis and it’s worsened over the past year. I’ve done all I can to take good care of myself. I’m active and my nutrition is great. I’m wondering if there is a problem with my endocrine system and plan to ask the doctor that I’ll see for the bone situation soon. I may have more than a gluten problem, which wouldn’t be unusual. None of what I post on here is medical advice for anyone in any way, other than to say that if you are having problems that seem strange to you, try to find a doctor who can deal with it. Don’t try to fix it on your own and don’t give up. Friends tell me there is an answer. We just have to keep looking.

It’s Monday and My Head is All Over the Place

I’m like this a lot on Mondays. Only this time besides just wanting to do a gazillion different things at once, I’m also thinking about things like the two lawyers that I had doing damage control last week when I was in a jury pool for a murder case.

The first one was a prosecutor who asked if we were all familiar with DNA. Of course, everyone has heard of DNA. Then he said something that I thought was a leading question like you see on TV when the a lawyer objects and the judge sustains it. He said something like, “So you all know and agree that DNA is accurate?” Everyone agreed except me. He was stunned. I had to explain that labs make mistakes and it’s not 100% reliable, you don’t get 100% certainty. He kept asking for specific times that I could tell him about when it wasn’t. Good grief. I kept telling him labs make mistakes and I’ve read about it and I have the impression, although I couldn’t give him details, that DNA is not 100% reliable and with 100% certainty. So, he ended up talking in an encouraging and persuasive tone of voice to everyone else about how people are set free when DNA exonerates them. (Of course they are. You can say with 100% certainty that someone’s DNA does NOT match, but not 100% certainty that it DOES.)

The other lawyer whose head I seem to have messed with was the defense attorney. He asked who all had police officers in their families or were close friends with any cops. I raised my hand and told him I used to ride with them in the Ride-Along program, and I knew a few over the years from church or from being in the same organization.

Then he asked if we would believe the testimony of a police officer over the testimony of another person. I thought his tone of voice suggested that we should. As everyone else was nodding their heads “yes”, I raised my hand. He looked over at me and said, “You wouldn’t?” He didn’t sound thrilled. I told him, “No. People are people.” We had a bit of conversation and a bunch of other people started talking and it’s all gone fuzzy in my memory by now, but then he said, “Well, she rode with them.” I told him the ones I rode with were good cops. I liked the ones I rode with, but people are people and I watch the news.

I was #11 out of 40 in the seating order, but I wasn’t chosen for the jury. Whew. I was glad because I had a bit of a stomach ache. It was from being glutened (accidentally ate gluten and I shouldn’t ever eat that stuff) for the second time in eight days and it took a few days for it to wear off completely. Thankfully, I feel great now.

The week before last when I was glutened, I was writing checks and I made a deposit and I wasn’t recording any of this. Normally, I would record it, but I’ve learned to take it easy when I’ve been glutened and my head isn’t all with me, so I did that. Only I forgot. One afternoon last week I went to the doctor and when I got to the office, it dawned on me that I better look in the checkbook and see if I had the money to pay the doctor. (I think my head was more messed up than I realized, so it’s really a good thing I was not put on a jury.) So, in the parking lot and within 10 minutes of my appointment time, I looked in the checkbook and saw that the checks I had written were more than the last amount of money that I had showing. Uh, oh. For over an hour, until I could get back home and get online and see where I was at with all this, I thought I might be overdrawn. I have overdraft protection so I would be covered by money in my savings and I think they would charge me something to do that, but at least nothing would bounce. When I checked on it, that’s when I discovered the deposit I forgot about. Whew, again. Oh, I used my credit card at the doctor’s office.

One thing I want to do today is order a set of cookware and a few other things that I need to replace. Mine is mostly old so it needs to be replaced anyway, but I’m having to do this because of gluten cross-contamination. I’m more sensitive to gluten than I was when I first came off of it. Sometimes that happens. I’ve learned that it’s not only plastic mixing bowls that can harbor bits of gluten, but also a non-stick pot with a single scratch. So, my scratched ones need to go, as well as my pitted aluminum. I can’t use my rolling pin because wood absorbs gluten, and my wooden spoons are out, too. It’s aggravating, but it’s worth it. I’ve had a bit of a problem with stomach acid at night, not as bad as before I came off gluten, but I may be getting just a tiny bit of it from my cookware. OH…cast iron and cooking stones absorb gluten, too. I read that they can be run through an oven with a self-cleaning cycle that goes up to about 900 degrees and that will kill it. I’m looking for a friend with an oven that I can use that does that.

My kitchen is inside out because of me going through everything and I hope to make some visible progress on that today. Also, I want to try out my new bread pans on some Basic White Bread. This will be my first attempt at making gluten-free sandwich bread. Baking gluten-free bread is different from baking regular bread, which I was only so-so at baking, so I hope I’m better at this kind.

There are about 50 things I want to clean here today. (Not really that many, but you know how it feels when you just want to clean everything?) And this evening, I want to work in the yard. And I need to make some soap. I want to try using a different recipe this time. I’ve been using recipe #8 on this list, but I want to try #7 today, just out of curiosity. I see one or two others that I also want to try later. There are some things I want to pack up to send to my grand-daughters in Canada. And some other things I want to send to another son near Houston. And I want to take some time to read the next section in a textbook that I’m reading. It’s a college literature book and it’s interesting.

Well, hubby went in to work at about the middle of the morning and my writing itch was too great to ignore, so it’s now early afternoon and I better get started on this stuff. OH…I am going to call the courthouse and see if the jury is still hearing that case. I haven’t seen anything at all in the news about the outcome.

Celiac Awareness Month

May is Celiac Awareness Month. Some of us are aware of Celiac every single day whether we have Celiac Disease, or are sensitive to gluten, which in either case a person is intolerant. Symptoms and the remedy are pretty much the same for both as symptoms are widely variable, and the remedy is to avoid all gluten always.

I’ve noticed when talking to folks who have been told they “might have a problem” with gluten, that there are things some people don’t know about testing for Celiac, so I thought it might be helpful if I pass on what I’ve learned from reading “The Gluten Connection,” by Dr. Shari Lieberman, and also from reading several web sites. (I have links to other sites in other articles in the “Learning to Live Gluten-Free” category on this blog.)

One study has shown that in Celiac Disease, the body sees gluten as an invader and it attacks the gluten. In gluten sensitivity, the body sees gluten as an invader and puts up a defense. This is partly why things get complicated when testing for gluten intolerance.

When the blood is tested for Celiac, they are looking for antibodies – antigliadin (IgA), transglutaminase (ATTA) and anti-endomysial antibody (EMA). If the first two are present, it shows that there is a problem with gluten, but only if all of the villi in the small intestine are completely flattened will all three be present. According to Dr. Lieberman, “more than 30 gliadin peptides (molecules) are not evaluated by this test.” Everyone pretty much seems to agree that blood tests can be inconclusive. Advanced Celiac will be evident in a biopsy of the small intestine, but it can be missed if it’s not advanced to the point of completely flattened villi. Also, gluten sensitivity will not flatten the villi. I’ve read that Canada approved a pin-prick blood test for home use, but I don’t think it’s available in the US yet. Not sure about other countries. The stool test seems to be controversial, just going by what I’ve read on web sites, with some people saying it’s not reliable and others saying it was a life-saver for them.

Since blood tests are sometimes inconclusive a person will say “they said I don’t have Celiac, but I have problems when I eat gluten.” The other reason that testing is complicated is that a person can be sensitive to gluten and not have Celiac. Again, the remedy is to avoid all gluten in either case. If I had a test done and it showed negative or inconclusive results, but I noticed that I feel better off gluten, then I think I’d just blow off the test and avoid gluten. Do you think it makes sense to continue eating something that is causing symptoms ranging from pain to depression to thyroid problems to intestinal upsets of various kinds and on and on, just because the test said something different from what a person’s body says? I think I’d listen to my body over a test result. They are still learning about gluten intolerance. One thing they do know is that gluten in any amount can affect the body for months, so if a person is sensitive it may take time to feel better when coming off of it.

Something else I’ve noticed while reading different sites is that sometimes the term “allergy” is used when this is not the same thing. An allergy, such as wheat allergy, causes a release of histamines. Celiac Disease and gluten sensitivity are not allergies. They are both a type of food intolerance.

Here is another site that I just found today: http://www.celiaccentral.org/ This is a site run by The National Foundation for Celiac Awareness and it looks like one of the best ones I’ve run across. There is information on all aspects of gluten-related items from diagnosis to shopping to research and more. They even have cooking videos.

There is a lot of information on various web sites, as well as in books and magazine articles. I’ve noticed some of it is conflicting. One reason is that gluten sensitivity hasn’t been recognized for as long as Celiac Disease has been. We need to be sure to keep it straight about allergy and food intolerance when we are reading about gluten. Also, we must listen to our bodies. Serious damage can be done if we don’t.

To the Point of Tears

“Wastin’ away again in Margaritaville…”  That song has been popping into my head off and on for days now. It’s not a broken heart problem, and I can’t have a Margarita, but I’ve got the “wastin’ away” part down pretty good.

Last night I was watching Survivor and noticed how skinny the contestants are lately. I’ve been dropping weight for months. First, I lost a few pounds before having to go gluten-free, then lost more afterwards, and I’ve lost one more in the past couple of weeks after having to make some other temporary dietary changes in an effort to deal with a temporary situation. When I saw the contestants’ bones sticking out, I thought that at least I’m not that skinny.

Later in the evening I checked my back with a mirror. Uh, oh. My spine and my shoulder blades are becoming prominent. So are muscles, not because I’m so strong, but because there is no fat to go between the muscles and the skin and the bones. I decided I look like the Survivor contestants looked last week. It’s kind of scary to see that and think of how my blood pressure has also dropped. I need to look up normal blood pressure for a 12-year-old. That’s probably what mine is right now.

Last week is when this really started to bother me. I was in the grocery store in the produce section, of course, piling veggies into my buggy. I felt like someone was staring at me. I glanced over in the direction of an elderly lady who appeared to be concerned. I imagined that she was thinking, “Why is that woman so skinny? It’s not nice to stare. Is that all she eats? I shouldn’t be staring. What is wrong with her? OK…quit looking at her.”  I’ve never had anyone do that and it really made me feel self-conscious.

I’ve already gone out and bought smaller jeans and slacks. My others were about to slide off. I thought I’d be Grandma with her pants on the ground on the  grocery store parking lot if I didn’t do something. So, I went one size smaller. That was about a month ago and now those jeans are too big.

The day I bought the jeans I also tried on a pair of slacks. I told my friend if I gain one pound these pants won’t fit, so I didn’t get them. I’ve lost a few pounds since that day, so I went back to the store and the pants were still there. I got them. They are a bit loose on me now, but I got them. A friend told me that her mom, who is gluten-intolerant, went from a size 6 to a 0, then up to a size 2. If I come in at a 2 when the dust settles here, I’ll be happy. The pants I just bought may not fit any more, but that will be fine with me.

This morning I was telling my husband my observations about how I stack up against the Survivor contestants’ skin and bones and I started crying a bit. He was surprised by that. It’s not something that I do very often. I don’t think he’ll tell me I look like a starving person in a third-world country any more. He did ask why I’m losing weight and he’s not and he eats pretty much the same things I do. I told him, “Beer and pretzels.” Plus, other things he can eat that I can’t like bread and cheese, but I had to pick at him a little bit.

I have to say, because I’m trying really hard to be thankful always, that we are both glad I feel good. I have lots of energy and it lasts all the way through the day and on into the evening. It’s so nice not to be dragging a protesting body through life any more. I reckon I’ll get used to being skinny. When I was 12, I was this size and my friends called me “Twiggy.” I guess I’ll be thankful and start thinking groovy thoughts and all will be well.

ADDENDUM, April 27, 2012: If you are considering going gluten-free as a weight loss plan, I wouldn’t recommend it. My weight loss started before I came off gluten. My nurse practitioner said what is happening with my body getting skinny is a result of the changes to the body caused from intolerance. I eat like a Hobbit. (That means I stop often to eat a small meal no matter what I’m doing.) It’s not caused from my diet.

When a person quits eating gluten, it’s not a matter of just buying processed gluten-free products to take the place of processed foods that have gluten in them. After all, Coco Puffs are gluten-free. Fresh and frozen foods are the best bet to get the most nutrition from what you eat. Getting proper nutrition can help with weight loss. So, as they say, shop the perimeter of the store and go to the middle for dried beans and grains.

Gluten, Gluten, Where’s the Gluten?

Oh, good! The store brand of loratadine I got from HEB is gluten-free! I had just called Kroger and asked about their store brand of acetaminophen, (it has starch and cellulose with no indication of where it comes from), and talked with one of the nicest sounding ladies on the planet, who told me that she would have to have the bar code off the box so she could tell me who manufactured it. Then I could call and ask them. I almost didn’t bother to call HEB. Their loratadine has a starch that comes from corn, but I didn’t know where it came from until I asked. I’m glad I did. My face hurts and allergy med will help.

This is a common experience with medicines. Generic drugs, whether over the counter or prescription, are obtained from different companies at different times. The company that manufactures the medicine would have to be contacted. I guess they use some kind of number off the bottle  to check the batch to see what is in it. From what I’m reading on this website I’ll stick with the brand name for acetaminophen, but I can use HEB’s loratadine.

While I’m here… In my last post, I said I thought an antibiotic might have messed me up. I still don’t know for sure. The name brand would have been fine, but I took the generic. I didn’t think to ask the pharmacist to call the company. I’ve read that it helps if a medical professional makes that call; they tend to be able to get better attention to their call.

A couple of other things could have been the problem though. One is if I ate out at a place that used the same knife to put the mustard or whatever on my gluten-free sandwich that was used on regular bread. Or, even if they dip the knife in the same jar of mustard or whatever. Maybe they use a squeeze bottle? Or, if the bread or corn tortilla or something else that I might have eaten, was laid on the same surface that was used for foods that have gluten. Surfaces have to be cleaned in between or the gluten-free food will be contaminated. I’ve read that if there are people living in the same house, and some have gluten issues and others don’t, that they need separate toasters and have to be careful not to cross-contaminate food.

Another thing that could have happened is envelopes. I’ve licked the glue on several envelopes recently. Wheat is used in that glue. It’s also on stamps. Yea, for self-sticking stamps! Otherwise, I would have been exposed to even more gluten.

So, if you have come off gluten to see if it changes your energy level, your sense of optimism, your digestive issues, or whatever, make sure to check all sources, including meds and glue on envelopes and stamps. Now, I need to go call that lip balm company.

Conversations About Gluten Intolerance

I’ve tried a few times to write this. There is just so much information it’s been hard to get it all organized. Plus, since I personally have the problem and I’m still learning to cook gluten-free, it’s sort of emotional for me and that makes it difficult, too. (Life doesn’t stop and give a person time to figure all this out; it keeps going and one has to eat and I don’t have a personal chef.) The reason I’ve persisted in trying to write this is that I hope reading it will help someone. So, here is another attempt with a new format. I’ve had several conversations with friends and family members who have asked good questions. Here are some of the questions and answers:

You can’t eat gluten? What is gluten anyway? Gluten is a protein that is found in wheat, barley and rye. The produce section of the store is where I feel the safest. When I go to other parts of the store, I have to read labels. I really appreciate the companies that take the trouble to put the words “Gluten Free” on their products. Otherwise, I have to plod through ingredient lists looking for things like hydrolyzed and modified starches and proteins and such. Also, extracts from wheat and barley and brewer’s yeast. Oat extracts also have to be avoided since there is no way of knowing if the oats have been contaminated by wheat by being processed on the same machinery.

Does that mean you can’t eat oatmeal? I’ve been avoiding oatmeal for now since some folks who are sensitive to gluten also can’t eat oatmeal no matter how it’s processed. That’s pretty rare though, but still I’m giving my body a chance to settle down from the gluten. When I go back to oatmeal, I’ll get some that is gluten-free.

Is there a list of gluten-free food? HEB and Kroger both have lists on their websites of gluten-free foods that they carry in their stores. When I want to know about a specific food, like when I first started doing this and had things like, say, a can of chili in my cabinet, I just go to the company’s website and see if it’s gluten-free. Most of them have an 800 number, so you can call, but so far I’ve been able to find out what I need to know by looking them up online.

What about dairy?  Dr. Shari Lieberman said in “The Gluten Connection” that sometimes a person’s body is going to react to dairy for a while when it’s having a problem with wheat. It can either mistake the protein in dairy, which is casein, for gluten protein, or it can be a problem with lactose, because the intestines are damaged and can’t produce the lactase needed for digestion of lactose. Sometimes after a bit of time a person can add dairy back into their diet.

I thought all this gluten-free stuff was a fad. So did I. That’s what I told my doctor when he suggested I try eliminating gluten from my diet to see if it would help my stomach. One of my relatives thought it was a fad, too, when I told her what my doctor told me to do. Then a couple of months later, she saw me and told me what she thought, and how amazed she was at how much better I looked.

What was the problem with your stomach? Acid reflux was so bad that sleeping propped up didn’t help at all. I was on a wedge with two pillows, with the head of the bed also raised on bricks. This started a few years ago and had been getting worse and worse. By late summer of last year, it was just getting ridiculous. Even if I ate five or six hours before bedtime, I still had reflux. That’s just some of the problem I had, but you can see it was causing some misery.

Some people, though, don’t have any digestive symptoms at all. About 1/3 of those who are diagnosed with Celiac disease have a digestive system that seems to be their friend. Their problem is discovered when they have other symptoms or diseases.

So, do you have Celiac? I don’t know. I haven’t been tested, but from the changes I’ve made to my diet, it’s obvious that I have a problem with gluten. Besides Celiac disease, there is also gluten sensitivity, and it could be either one. It’s intolerance in either case. And the remedy is the same, too. Don’t eat the stuff.

So, you figured out that your problem was caused from gluten just by not eating gluten? Pretty much. I was already keeping a food diary when I went to the doctor. I was doing that so maybe I could figure out what was going on. My doctor suggested I try digestive enzymes before eliminating any foods. I took them with meals. But one day I ate the most beautiful Bavarian Cream donut I’ve ever seen in my life. It could have been in a food ad, it was so big and gorgeous. An hour later, that donut was sitting in my stomach like a rock. I took enzymes and within 15 minutes I could tell the difference. Antacids didn’t have the same effect. In fact, they didn’t help at all.

So how do you know it wasn’t just the dairy in the donut and not the wheat? Because gluten sits in my stomach like a rock. I’ve also eaten dairy and not wheat and had reflux, so I’m better off leaving both things alone for a while.

So, why not just eat a donut if you want one and take some digestive enzymes? Oh, boy. There have been times I’ve wanted to run down to the donut place and do just that! Or, to the Mexican bakery, or the pizza restaurant or some other place that is a mine field for me. But that wouldn’t be wise. I keep enzymes on hand for accidents, but not for every day. If a person is sensitive to gluten, their body sees it as an invader, and it will react to it in any amount. Gluten is toxic and causes inflammation and affects body organs, too, if a person has Celiac.

How does gluten affect body organs? Well, Celiac is mostly what has been studied, so I don’t know about simple (it’s not simple if you’ve got it) sensitivity, but a person who has Celiac is more likely to have bone density problems, pancreas/blood sugar problems, thyroid disease, autoimmune diseases, neurological disorders, IBS, anemia…lots of problems. There are such high rates of Celiac among folks who have some of these conditions, that some researchers recommend they be tested for Celiac. And sometimes if they do have it, and there was a problem with low bone density or diabetes, for example, it will clear up when the person comes off gluten. I know that sounds surprising, but also, one out of 133 people in the US have Celiac, and then there are more who are sensitive to gluten.

What sets this off? Have you always had it, or does it just pop up out of the blue? It can be over-exposure from so much of it in our food supply. It can also be from stress, surgery, childbirth, certain medications. Lots of things seem to be a cause for different folks. I don’t know how long I’ve had a problem with gluten, but my bone density has been low since I was at least in my early 40’s. Gluten intolerance could possibly be the reason for that.

Can’t you just go “low gluten”? Nope. The body reacts to any amount from any source if it’s intolerant of gluten.

Wow, how come so many people have this problem? Is this new? It’s not exactly new, but it is more prevalent than it used to be. There are writings that go way back, like a Greek doctor who wrote about it in A.D. 100. The rate of Celiac disease has been increasing over the past 50 years. I kept reading that this was discovered by testing blood samples. I wondered, who keeps blood for 50 years? Then I read some place that it was from the military. When people join and the military takes blood to test their health, they keep the blood and it’s used in research. So, that’s how they learned it’s increasing; they tested blood that was collected over time and saw the increase.

So, that answers the part about it being new, but why is it increasing? Partly because we are consuming more grains that have gluten in them than we used to. In 1967, the average was 115 pounds of gluten-containing grains per person; in 2003, it was up to 139 pounds per person. The other part is the engineering and harvesting methods. Engineering, being how grains like wheat have been bred to have more gluten. Gluten is the thing that makes our bread hold together. Bread with a small amount of gluten is pretty dense. Wheat is also harvested and milled before it has a chance to sprout. When it sprouts some of the gluten is eliminated. In the Olden Days it sprouted before it was milled. And bread was more dense, too.

Isn’t it hard to not eat gluten? Well, in some ways yes, and in some ways, no. At first it was simple. I felt so much better there was no way I even wanted to think about eating food that made me feel so bad. But lately, psychologically it has not been easy. I told my doctor that seeing the commercials for things I’ll never eat again, like a certain awesome hot dog from a certain fast food place, is like being in high school and seeing an ex-boyfriend walking down the hall with someone new. There are certain aisles in the grocery store that I’d rather not even see. The other night, I dreamed someone was cooking black-eyed peas and they looked so good. Then they mixed them with macaroni noodles and I couldn’t eat them. I also dreamed about eating a chocolate pie with that very flaky crust that I’ll never eat again. I sometimes avoid magazine articles with recipes that I would have to redo to fit my diet, although Asian recipes are pretty good and are usually gluten-free. I try to remember that  there really are a lot of foods that don’t have gluten in them. I suspect that eventually, I won’t feel this way any more. My doctor said it will pass.

So, do you feel better physically? Yep. (Well, that is, until last month when I had to take an antibiotic; that caused some problems that I’m working on.) Otherwise, I no longer feel like I’m dragging a protesting body through life. I have more energy and my brain works better. My clothes fit better, too. Several people have told me that I look like I feel good now.

How long did it take to feel better? A few weeks. It can take a few months though, so if you are new to this don’t give up too soon. Because of the antibiotic causing some bloating that doesn’t seem to want to go away, I’m doing a detox diet. For me that means anything that my body could confuse for gluten is OUT. That would be dairy, soy, oats, nightshades, peanuts. Just to let my system get a bit of a rest, I’m also not eating eggs, animal protein at all, or caffeine. And I’m taking a supplement to help my liver do it’s detox job. Remember, gluten is a toxin for the person who is intolerant.

Where have you learned all this? Most of this info is from “The Gluten Connection,” by Dr. Shari Lieberman. Some came from websites on Celiac and gluten sensitivity. Here is a short list of websites that I hope will be helpful if you need more info:

http://www.gluten.net/

http://glutenfreemommy.com/

http://glutenfreeworks.com/

Be sure and see this page on Gluten Free Works if you need more convincing about the seriousness of gluten intolerance: http://glutenfreeworks.com/blog/2009/11/04/celiac-disease-alert-six-ways-gluten-can-kill-you/

http://www.celiac.com/

http://www.celiac.org/

http://www.theglutensyndrome.net/

I hope this is helpful; it can be overwhelming, especially if you know you need to eat differently, and you need to do it ‘right now’ and don’t feel like you have time to figure it out first. There are three meals a day that have to be fixed, after all. Hang out mostly in the produce section of the store. Get produce from different areas – green leafy, cruciferous, root veggies, etc. and fruit. Then go check out gluten-free grains such as rice and quinoa and, also, beans. There are gluten-free pastas that are good, as well as rice noodles in the Oriental section. Sometimes the pasta packages have recipes on them if you need ideas. Then add a few nuts and dried fruits, nut butters and rice cakes and you’ll be fine.