
joellen
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I am curious about that myself. It seems there are a multitude of opinions. The doctor that told me I had a gluten sensitivity (which I'm still not completely convinced is true), also recommended something called Ortho Molecular Products; Alpha Base Foundation Pak, which is a pre-packaged vitamin supplement combo. From what I can tell, it's multiple B vitamins, Omega 3's, vitamin E, and some other things. Each packet has about 5-6 pills. Then there's the magnesium supplement, the Vitamin D3 supplement, the iron supplement, and of course, the other stuff I normally take; Green tea extract, chromium picolinate, pro biotics, and my prescription meds. That's a lot of pills. Some before meals, some with meals, some after meals, some in the am, some in the pm. Seems I'm always swallowing a fistful of capsules. And honestly, I haven't noticed a bit of difference. Even in the vitamin categories, I tested in the normal range, but low normal for some. So, I guess not even "normal" is normal! It's hard to know if I'm being "sold" things I don't need, or if these really are worth the cost. And I'm pretty sure there are high quality supplements out there that cost less than what I paid; I just don't know how to find out what they are and where to get them. You can order anything, but which is the best quality for the money?
I also wonder about the probiotics. I noticed at Whole Foods, some of them are in the refrigerated section, I'm assuming to keep them fresh and perhaps they have "live" cultures? Would those be better? Oh, and digestive enzymes, I have those as well. As you can tell, I am a bit cynical and mistrustful, having been run round the block by medical professionals in the past, sometimes with detrimental results.
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Based on my own experience, I think the prep is pretty safe if you are in fairly good health. I think for anyone that has an unstable health status, none of the preps could be considered safe. Of course, one of the the requirements is that you drink plenty of fluids. I didn't have to stop eating solid foods until the afternoon before the test. The good thing is that it didn't take that long, and it didn't make me feel bad; no cramping, no nausea. I don't that any of the preps are easy.
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Gastroparesis can be a devastating illness. Before I was diagnosed, and had no idea what was wrong with me, I made the decision to make that nausea and lack of appetite work for me, lol. I thought, what the heck, if I don't feel good, I'm just not going to eat. And it did work. It was when I got seriously ill that I lost so much weight. In a twisted sort of way, I was thinking, hey, at least I look better. Which was confusing to people, because on the outside, people would say, hey, you look great! Because I did need to lose the weight. I would get comments like, "hey, maybe that's what I need to get, ha ha". I would think, yeah, maybe you'll get lucky and get cancer, then you can get chemo and lose the weight that way! Wouldn't THAT be great?? But I felt horrible. I do wonder if having the gastroparesis changed my metabolism in some way. Because of the not eating, or eating a lot less, for so long, my body went into a "starvation mode", and started conserving calories. I have gained back everything I lost, and then some. I know part of it is psychological. When nausea has been such a big part of my daily existence, being able to eat and actually have an appetite and enjoy food feels even better. Hunger=health. So, I struggle with that. And by consciously increasing my consumption of protein, that sometimes makes me feel queasy. It takes longer to digest, which is good in the way of evening out blood sugar, but just a little bit too much can tip it in the other direction. I am extremely conscious of my level of full/hungry/nausea, it's a delicate balancing act. Carbs, especially in the way of bread/toast, has given me more control of that. The whole thing is very frustrating. Bread has been my friend for so long. When I don't feel good, but know I have to eat something, a piece of toast will almost always settle my stomach. Still does. Like the old remedy for morning sickness of crackers and ginger ale. And I'm still not convinced about the blood test results.
One of the treatments I got for the gastroparesis was botox injections of the pyloric sphincter. That helped a lot; it made it much easier for my stomach to empty. There aren't a lot of treatment options. I also used something called Motilium, or domperidone.That was a lifesaver. I rarely use it anymore, but at the time, it really helped to turn things around.
I know what you mean about being sick. It was really a blessing in disguise to have gotten so very ill. It forced me to stop trying to keep up. But learning how to push through the being sick and live in spite of it was also an exercise in persitence.
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I am stuck with the chicken; it's going to be ordered. In-laws just moved to a new home, and their grill is not there yet.
I never thought about the lactaid. Now my next thing is to find another doctor for a second opinion that I can trust. I do like my family doctor, and trust him for the most part, but he's a busy guy, and I'm not sure how much he looks at treatments outside of mainstream medicine. He had given me a prescription for Crestor, since my cholesterol levels were sky high. Then I did some reading that said statins were like poison, and avoid them. High cholesterol runs in my family anyway. Doctor number two said she thinks the carbs and sugars are elevating the cholesterol levels more than fat intake. Thus the array of vitamin supplements. And my CRP level was too high. I think that's the point I figured I might as well start planning my funeral.
I guess I should just get the re-test done on the blood work, and go from there.
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I think you are correct in that a second opinion may be in order. I really am trying to avoid gluten and sugar as much as possible. We went to a dinner sponsored by our church tonight. I was pretty sure it wouldn't be a friendly food environment, so I ate something before we went. It was an appetizing spread; three kinds of pasta, all of which also had cheese (am also supposed to avoid dairy), a variety of breads, and salad. I did have salad. Brownies were served for dessert. My darling husband had some of everything, and polished off two different brownies. There was a meeting after the dinner, which probably was a good hour long, and once it was over, he couldn't get out of there fast enough. He said it was all he could do to stay awake.
After we got home, he said he was surprised he felt so rotten, he didn't think he overdid it that much on the carbs. He has also drastically reduced his normal carb intake on his own weight reduction plan, so this was not his normal meal. When he went to bed, I noticed that his nose was running and that he was stuffy. I told him that he may himself have some gluten intolerance himself. Since I had no pasta or dessert (ok, one bite, lol), I felt perfectly clear headed. By the time we got home, I was hungry, and luckily I had made some broiled chicken and brown rice for my son before we left, and there were leftovers, so I ate that. At the dinner, I was talking to a friend that I know is celiac and allergic to dairy. She told me she also ate before she came to the dinner. A woman sitting next to me asked me if I was on a gluten free diet, and that her stepson that lives with them is autistic, and they started him on a gluten free diet and saw amazing results. He is a teenager. Hey, if nothing else, this is a great ice breaker, lol.
Mother's Day is going to be tricky. We'll be at the in-laws, and trust me, no one there is gluten free, sugar free, or dairy free. We're having fried chicken, potato salad, coleslaw, and not sure what else. It will be a no-win situation. Luckily, most people are more focused on their own plate than what's on yours. I'm not celiac, and still not completely certain of the degree of gluten intolerance, since it doesn't seem to really bother me, so if I'm as careful as I can be, I'll be ok. But I'll have to completely avoid dessert, or my credibility will be shot!
I was feeling quite smug and pleased with myself that I had no pasta, no bread and no carb hangover. I am not perfect, but certainly making progress.
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How interesting to see another person that suffers from gastroparesis! I was diagnosed with GP back in 2002, so sick I was disabled from working; literally thought I might die. Lost 20 pounds in a month, ate almost nothing at all, too sick. What a horrible time.
Also, if you have delayed emtpying (GP), then the diet generally is higher in carbs, since they are easier to digest. That is one thing that makes this difficult, I have lived on carbs for the past 7 years. My condition has greatly improved, but to this day, breakfast is an issue. So, a diet that consists of meat/fish and veggies or fruit can create it's own problems.
I'm not celiac, and my blood test results seem inconclusive regarding intolerance to wheat and dairy. I've had numerous endoscopies, though none for a couple of years. You may want to consider something called a gastric emptying test to confirm the diagnosis of gastroparesis. It's an easy test. You simply eat a small meal that contains something that allows them to see the passage of food through your digestive tract. They then take x-rays over a period of several hours to see how things move. You may also want to talk to your doctor about the cause of the gastroparesis, if one can be found. Most common is the presence of diabetes, but more than half the cases are of unknown, or "idiopathic" origin. I have no idea what caused mine, doubt I ever will. Gastroparesis can improve or worsen with time, or stay the same. What it was back in 2000 is probably much different than what it is now. The delayed emptying may well be a factor in the gluten intolerance. Let me know if you have any questions, that at least is something I do know something about!
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I think one of my reasons for being skeptical is that I was urged to take/buy these supplements that were available for sale at her office. Now, maybe I'm just being cynical, but I'm not sure if she's doing this because she really wants her patients to have the best quality and this is how she ensures that, or if this is just an additional profit center. As far as I know, she does have a good reputation in our area. But again, with the vitamin packs, they are pre-selected and packaged, which you know makes it more expensive in itself, and I don't like the "one size fits all" product. Do I really need 15,000% of vitamin B requirements every day? Would I benefit from more of omega 3's and less of something else? And surely there is more than one source of reputable supplements.
And I still don't really understand the test results. If the reference says it's low, why does she say it's not? Even with the candida, with normal being <1, and mine is 1.1, how significant is that? Don't get me wrong, I KNOW my diet needs adjusting, and I do feel better, but how much of that is just common sense and good nutrition, and how much is a true sensitivity issue? And are the results also based upon typical consupmption? I just don't like the do it or else mentality. The thyroid issue has been present for years, hypothyroid, and when it was first discovered, the results were off the charts, so to speak. That has been controlled by medication for years though.
It's also frustrating that it's so difficult to find appropriate foods when eating out, or when I'm away from home and find myself hungry and don't have something with me. I try to plan ahead. I know this weekend for Mother's Day, we will be with family, and that will be a challenge. In my immediate family, siblings and children, there is no celiac that I'm aware of, but who knows?
With the digestive enzymes, I'm confused also. The bottle says take it before meals, somewhere else I read take it with or after meals. I have two different probiotics, they have different ingredients. One I already had, which I think is a pretty good one, and the other is what the doctor sold me. Is one better than the other? How do I know?
dang it!
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I have had some problems with being tired, but did not know the cause. I do have sleep apnea (genetic and structural), which is being treated, but also am on thyroid medication (for some time), and knew my female hormones were out of whack.
I am not tired all the time, and it doesn't seem that eating these foods cause me to be ill. Although I do get headaches, I believe they are directly related to some arthritic changes in my cervical spine, aggravated by an auto accident years ago. I don't have sinus problems, or have rashes or swelling.
The thyroid tests came back normal, but on the low side of normal. In addition to the dietary restrictions, I was given instructions to add a number of dietary supplements, everything from iron to Vitamin D. I am not anemic, although my ferritin levels were on the low side of normal. Same with the Vitamin D. Normal, but low normal. So, is it normal or is it not? Not to mention the costly multi-vitamin pack, probiotics (which I agree are needed), digestive enzymes (maybe the same?), and on my own, and with agreement, green tea extract and chromium picolinate. Probably some other stuff I forgot as well. The doctor did switch me to bio-identical hormones. I am supposed to go for a re-check on the blood tests, but wonder if 4-6 weeks will really show any changes?
I just don't want to get tossed on the "let's call it gluten intolerance" bandwagon, and be sold a lot of products deemed as necessary to my health and well being, when they are not. I'm just feeling a little aggravated right now, as you can tell.
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I am brand new, stumbled on this site doing a search for information. I'll give you the short story.
I went to a new doctor for help and testing regarding hormones. She did a barrage of blood tests, and has told me that I am sensitive (not allergic) to casein, wheat and chocolate. This is based on an IGG panel. Here is why I'm skeptical. The results indicate a 4 for both casein and wheat of mcg/mL. The test reference indicates that these are "very low" in range. I am trying to remember the explanation given to me at the time. As I recall, it had to do with the presence of Candida Albicans IGG of 1.1 (<1 being normal) and Candida Albicans IGA being 1.7. Candida Albicans IGM was 0.5. She had me see a dietician, who of course wanted me to completely eliminate all these from my diet. She said that the results were indicative of leaky gut syndrome. She said that the yeast overgrowth in the gut was being fed by the wheat and sugars in my diet, and that they had to be completely eliminated to get rid of the candida.
While I do not in the least disagree that my diet was loaded with carbs, I did not seem to be having any horrific symptoms, except that sometimes when I ate, it would make me feel sleepy. I know, classic carb overload. I have no issue with changing my diet, I know it's long overdue. Since then, I have sharply reduced my intake of both gluten and sugar. I just can't seem to get to the 100%, even more so because it doesn't seem to bother me if I have them in modest amounts. And eliminating ALL sugar, ALL dairy, and ALL gluten and ALL chocolate is very challenging.
My dilemma is that while I want to be compliant where I need to be, I don't want to be unduly restricted where there is no need for complete and total elimination. I did notice that one time when I "cheated" and had some pizza, about an hour later I noticed that I did have a feeling of racing heart; was it the wheat/cheese or did I just overdo it, or maybe both? I had two slices, not the whole pizza. But, I have avoided it since then.
This whole thing is making me a little crazy. I want to do what makes sense, but I don't want to be led to believe something is true when it's not. I do feel better with the increased protein and decreased carbs. But, holy cow, do I need to feel riddled with guilt if I have one slice of whole grain bread a day?
I would greatly appreciate any insight and advice in this area. My family doctor did not think there was cause for concern, other than agreeing that I should reduce my intake of carbs for all the obvious reasons.
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Brand new, but saw this topic and thought I would respond.
When I had a much delayed colonoscopy, my doctor gave me some pills called Visicol. It was not a bad prep. The afternoon before your procedure, you start taking the pills, and as I recall, plenty of fluids. Although there are perhaps 50 pills in all, I didn't take them all. It was not uncomfortable and did not make me sick. Basically, the water you take in helps to flush everything out.
I could tell by evening that I was pretty much cleaned out, and just didn't take any more of the pills. I always think they overkill on those instructions most of the time anyway. I was allowed clear fluids, jello, clear juice, etc.
I haven't looked into colonics, but I have to say that there are other preps besides the awful stuff you drink. I've never had them, and don't intend to either! I don't know why they don't prescribe the tablets more often, it's so much easier.
Non Celiac Gluten Allergy?
in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Posted
Very interesting and informative comments. But, also confusing to me. What is considered "positive" for antibodies?
I went to a new doctor for bio-identical hormone treatment, and she ran many other blood tests as well. What is confusing to me is that according to the reference on the test results, the range of 4 for both wheat and casein is considered in class 0/1, which is "very low". And yet she is telling me to eliminate these foods. I know there was some concern about leaky gut, because the candida albicans was just slightly out of range. Normal being <1, and The IGG was 1.1, the IGA was 1.7, and the IGM was in range at 0.5. And the food allergy profile shows no allergy to either wheat or milk, both were <.35, class 0 absent/undetectable. In fact, there were no food allergies detected at all.
Don't get me wrong, I am all for following good health practices, but I am questioning the diagnosis of gluten and casein sensitivity, as well as the leaky gut. Very possibly, the candida is related to antibiotic use. How do I know?
I have drastically reduced my consumption of these foods, but have been unable to completely eliminate them. I already knew I consumed too many carbs, so that has been reduced as well. I have had no negative symptoms that I am aware of, and did not present with any celiac type complaints. Of course, the list of gluten intolerance symptoms include everything from headaches and fatigue to much more serious complaints. Who doesn't get headaches? I am fairly certain that my headaches originate from a disc degeneration in the cervical spine, which was diagnosed after an auto accident. Plus they seem to come from my neck, I can feel it.
I am not trying to trivialize the significance of the negative affects that gluten intolerance can have on your health, I just don't want a doctor or anyone else taking an alarmist or extreme position when it's not warranted.
I am interested in your thoughts.