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Everything posted by JaneWhoLovesRain

  1. JaneWhoLovesRain

    HELP -Biopsy Results

    Hi - when I first saw the dermatologist for my rash he quickly looked at and said I had LSC. I never heard of this so went home and googled it and was rather insulted to read that it is very common among those in nursing homes and psychiatric hospitals. And like you the description and pictures did not match what I had. (next visit I was diagnosed with psoriasis/eczema, then scabies, then after a biopsy of the lesion itself some strange disorder that hits 1 in 10,000 people, finally GI doctor said DH), I just did another search on LSC and see that it is caused by chronic itching so it is very possible you (as well as many others here) could have this simply because DH is one of the itchiest skin diseases there is. So yes, you could have LSC but the underlying issue your doctor is missing is what is causing the itch that causes you to scratch so much that it is turning skin into a leathery mess. I just found the below picture of LSC that looks very much like my dh looked but the other pictures on the same web site look nothing like this so maybe this person has dh as well as lsc.
  2. I finally found a good bread and have been enjoying toast at breakfast for the last 3 days. Xanthan gum has given me problems in the past and I generally avoid it - I thought I would give it one more shot with Canyon's cinnamon raisin bread as it had good ratings. I was doing okay until today when I was stricken with the worst abdominal cramping, bloating and di. Looking at the ingredients of the bread it seems like xanthan gum is rather high up there, generally it seems to fall at the very bottom. Does it seem to you that there might be a bit more than the normal amout of xanthan gum used in this bread? And I'm wondering if anyone else has had a problem with Canyon Bakehouse. I was so happy to find a good bread and I hate to give it up but I can't go about feeling this bad. INGREDIENTS: WATER, BROWN RICE FLOUR, RAISINS, TAPIOCA FLOUR, WHOLE GRAIN SORGHUM FLOUR, ORGANIC AGAVE SYRUP, EGGS, XANTHAN GUM, EXTRA VIRGIN OLIVE OIL, CULTURED BROWN RICE FLOUR, EGG WHITES, SUNFLOWER SEEDS, ORGANIC CANE SUGAR, CINNAMON, YEAST, SEA SALT, ORGANIC CANE SUGAR VINEGAR, ENZYMES.
  3. JaneWhoLovesRain

    Canyon Bakehouse bread and xanthan gum

    Hi Ennis and thank you for your reply. When I make my own muffins I usually use psyllium husk as you recommend. I hope I've learned my lesson and don't buy anything with xanthan gum again. As a gluten free bakery owner would you say that xanthan gum is rather high on the list of ingredients for the Canyon bread? To me it seems to be and because my reaction seems quite strong this time I'm wondering if it's because there's a high amount of the xg. Thank you for the link to the bread, I'm glad to see the cinnamon raisin is also low in sodium, something else that I have to be careful of. Thanks, Jane
  4. I'm struggling with various vague heath issues - lots of hair loss/thinning, dry hair, extreme insomnia, fatigue, depression, total lack of motivation, unable to concentrate, dry skin, low body temp in the morning, irritability, high LDL, hoarseness, etc. I never would have thought of hypothyroidism as I am not obese, but instead a bit underweight. However, I recently stumbled on "hypothyroidism caused by iodine deficiency" and things started clicking. In addition to eating gluten free I also eat very little dairy, very little red meat (a pound a year at the most), very little seafood and very low sodium. I make my own baked goods and omit the salt from all recipes, I don't add salt to anything, either during or after cooking. My iodine intake has been extremely low for the last 8ish years. I never gave a second thought to this but now wonder if I may have an iodine deficiency that is causing thyroid problems. My TSH was tested in April and it was 2.21. I went back to the doctor a month ago expressing my concerns about this but he refused to test again saying my thyroid wasn't enlarged and my test was normal in April, and of course he said there was no need to test free T3 or T4. I'm leaving the jerk and looking for a new doctor (the soonest I can get an appt as a new patient is 3 1/2 months away). Meanwhile I'm thinking at the rate I'm losing hair I'll be totally bald by then. Anyone have any experience with hypothyroidism and have any advice as to how to proceed? Does it sound like hypo? Can one have hyperthyroidism without having an enlarged thyroid? I know I can increase my iodine intake but before I do that I really want a base line of what my thyroid levels are and I want to know if this is in fact what my problem is. And if my thyroid really is okay than something else must be wrong. I'm so tired of hearing "it's just anxiety" or "that's normal for someone your age" when I know darn well it isn't anxiety or normal!
  5. JaneWhoLovesRain

    Thyroid problems - maybe?

    Thank you for your very helpful comments. If I go by the two non-standard alternative doctor iodine deficiency/hypothyroid tests I most likely am deficient/hypo. I just took my temp and it's 96.8 (Not a typo and not 98.6). It's almost always below 97 first thing in the am, this morning it was 96.2, and on occasion it's below 96. I've done the iodine patch test. I see so many differing opinions on how quick it should disappear before being considered positive for iodine deficiency, anywhere from 4 hours to 24 hours or so. Mine is greatly diminished at 12 hours, but not totally gone. But mainstream doctors don't give a hoot about this. My PCP tells me my temp is normal for me, we're all different, blah, blah, blah. It would be hard for me to be getting any gluten, but not impossible. I eat very little processed food and just anything other than veggies or chicken or juice is labeled gluten free, and most of that is certified. Exceptions would be nuts and seeds. If it says "gluten free" but on the back says "may contain wheat" or something along that line I don't buy it. Another exception would be the cheerios I eat. They are not certified gluten-free and I know there has been back and forth as to if these are safe. For the most part my celiac has been in the form of DH so it should be pretty easy for me to see if I were to ingest gluten. I'm probably not getting enough calcuim, that's for sure. I don't supplement it (but know I should), my protein intake isn't that great either as I don't eat much meat, though I do have chicken twice a week. I eat lots of fruit and vegetables and have recently added Love Grown Power O's to my Cheerios (very blah tasting cereal but has 6 gms protein and no corn). Corn, that's another food I wish I could keep away from. That could be my problem, too! When I saw the chiropractor a couple years ago he put me on a very strict diet - no dairy or grains of any kind, no food in the nightshade family, no added sugar at all. Lots of no's! What I could eat was eggs, nuts, seeds, most veggies, most fruits (no bananas) and that's about it. I ended up losing about 10 lbs (not good cause I'm already just under normal weight) and my cholesterol dropped significantly, but health wise didn't feel much better. I stayed on that diet about 6 weeks, but it was just too restrictive and I couldn't bear to lose any more weight. I was on it again this year from April to June, mostly to bring my cholesterol down so I wouldn't have to go on statins. I lost 10 or so pounds again but my total cholesterol only fell about 4 points. Again, I felt no better physically. So now I'm back to my "usual" diet. Dare I say that my grocery store has Hagaan Daz ice-cream on sale for $1.99, well I jumped on that special treat! First ice cream I've bought in months. Once I can get to a good doctor and find out for sure if all my thyroid levels are normal or not I'll feel more comfortable about what step to take next. And hopefully I'll be able to hook up with a good nutritionist.
  6. JaneWhoLovesRain

    Thyroid problems - maybe?

    Kitty kitty, thank you for the link. I most likely do have several of these deficiencies but before I start self-supplementing I want to get tested so I know for sure what I'm dealing with. I'm already supplementing with B-12, B-complex, zinc and magnesium but still feel like crap. Your link led me to find the phrase "board certified clinical nutritionist." This is the kind of professional I need to see but despite searching I can't find any in my area or even a way to find one by zip code. Anyone have any idea how to find a board certified clinical nutritionist by zipcode? I found a "functional chiropractor" a couple years ago and went to him. He was a great guy but really all he wanted to do was sell me his very high priced vitamins without any back up as to what my problems were other than the answers on his questionaire. That's not what I'm looking for. I'm eating gluten free, lo-sodium, lo-bad fat, lo carbs, almost no dairy, almost no meat or fish, lo-added sugar, minimal processed foods, there's not much left for me after removing all of that.
  7. JaneWhoLovesRain

    Thyroid problems - maybe?

    My GI doctor tested my anitibodies (really not sure which ones though, other than whatever is tested for celiac) last fall and everything was fine. At 60, I'm beyond perimenopause, lol, which I guess is why the doctor says the way I feel is normal for my age. But to me it doesn't feel normal. Dang, how does one know exactly what is "normal?" My PCP refuses to do any thyroid testing on me because my thyroid isn't swollen and my ob/gyn tell me to see m PCP. Because my symptoms are so generic and can be just about anything I'm more or less left hanging.
  8. JaneWhoLovesRain

    High cholesterol/statins

    I asked about measuring the particle density but he didn't feel that was important. He was so narrow and so focused on my high total cholesterol and getting me on statins that he wouldn't even discuss if there is possibly another reason why it is so high despite my excellent diet and daily walking. Then he accused me of being narrow minded because I wanted to look at other causes. Dr. Sinatra agrees with you about inflammation causing heart disease, not cholesterol. He sees four causes, inflammation, oxidation, sugar and stress. Cholesterol isn't a cause according to him. He gives great evidence to back it up but other doctors also give great evidence as to cholesterol being the main culprit. It's all so confusing. My trigs are excellent at excellent at 52 and my HDL is likewise good at 72.
  9. JaneWhoLovesRain

    High cholesterol/statins

    Having an LDL of 158 and total cholesterol of 241 my doctor insisted I had a coronary calcium ct scan to look for build up in the arteries. When it showed I did have plaque he "demanded" (in a very loud and aggressive way) I go on statins, telling me if I don't I'm going to drop dead of a heart attack. I had read Dr Stephen Sinatra's book "The Great Cholesterol Myth" before the appointment and wanted to discuss this with him but he refused, telling me that the info in there is biased, one sided, no medical backup to it, one person's opinion, dangerous, etc. In the end I took the prescription for statins but have yet to take one. My HDL and trigs and all ratios are excellent, it's just the LDL that is ruining it all. My cholesterol has been high for years and my doctor has never taken the time to discuss my diet, exercise, stress level or anything that may contribute to high cholesterol. He says the only way to get it down is by statins. (I'm not stupid though, I do know good food from bad food and based on what I eat my cholesterol shouldn't be so high, imo.) Dr. Sinatra's book is a real eye opener. He takes many studies and shows exactly why and where they are flawed with their biases towards statins. He talks about the real reasons behind high cholesterol and why having cholesterol that is too low is dangerous. His viewpoints (similar to those of Dr. Mercola and many other functional/integrative physicians) are so opposite of what the mainstream doctors say. Only in very rare circumstances does he think women should be on statins and men should be only when their risk of heart disease/attack is high enough. But is he right? There is so much controversy on this issue - butter is good, butter is bad; get your cholesterol under 100, that number doesn't matter; statins have lots of side effects, statins have few side effects; everyone should be on them, no one should be on them; take CoQ10, don't take CoQ10; meat is good; meat is bad; carbs are good, carbs are bad; canola oil is good, canola oil is bad; saturated fat is good, saturated fat is bad; coconut oil is the best thing since apple pie, coconut oil is as bad as any other fat so avoid it. The only thing that they all agree on is that sugar is bad and most vegetables are good. How does one ever know what to believe when there are so many different opinions? How can two different groups look at the same study and come away with totally different conclusions? What good does listening to your doctor do when the doctor next door will look at the exact same lab results and hear the exact same story but recommend something totally different? I do recommend Dr. Sinatra's book just to give a different side to the entire cholesterol debate. It is very interesting and he does bring up a lot of good points. Icelandgirl - I'm glad to hear your doctor is willing to work with you on ways to bring your cholesterol down without taking statins. Your numbers aren't that bad, but like me you have the build up which puts a different light on it all. Seeds and nuts are a great way to get needed nutrients, and they are tasty and filling as well. Also pomegranate juice is supposed to be good at slowing down the plaque build up and in one study it was shown to reverse it.
  10. JaneWhoLovesRain

    Angular Cheilitis

    Does anyone else have this? It has been about 3 years off and on for me. I thought it was because I was deficient in vitamin B so I started taking supplements. It finally cleared after a few months. Everytime i stopped the vitamin B, even for a week, it would come back. I asked my doctor and he said it looks like rosecea (stupid response, it does NOT look like rosecea, I have cracks on the corners of my lips not a bumpy red rash on my face). Finally I stayed on the vitamin B and it went away. Then my yearly phyiscal was coming up and I did something stupid, I stopped the vitamin B about a month before my appt hoping it would come back so I could tell my PCP and insist he find why I have this. Well, this time it didn't come back and I never even mentioned it to the doctor thinking it was gone for good. I stayed off the B supplements. Then about a month after my appt it came back. This was in June and it is still here. I started again on the vitamin B and it has lessened but has never gone away 100%. It hurts, itches and looks awful. And I'm scared as to why I can't get rid of it. Obvious answer probably is to go to to the doctor but when he looks at me and says it roseca I feel like I am fighting a losing battle. So I wondering if a anyone else has this and if so do you know why and how did you get it to go away? Jane
  11. I was at a used book sale yesterday and happened to see an old dermatological textbook. Of course the first thing I looked up was dh just to see what it had to say. What I read shocked me as well as scared me half to death. The description of dh was right on, severe itching, blistering, bilateral, arms/elbows etc. but there was no mention at all of celiac, wheat, gluten or anything along that line. The reason they gave for the cause of dh was "a manifestation of an internal cancer," and later it said it results from cancer, usually cancer of the ovaries or one other that I can't remember. Being a hypochondriac, this was about enough to put me into cardiac arrest. I looked at the publication date and it was printed in 1963 which really isn't all that far back. Has anyone else ever heard of this?? I thought by 1963 they were quite certain that dh was a form of celiac or did it come way after that? Sorry if I'm freaking anyone out by asking this. That's not my intent at all, but since cancer is one of my biggest fears I found this rather unsettling.
  12. I'm wondering if anyone has found they have a problem with this granola. I was happy to find this as it is a good dollar or two less expensive than other brands and it tastes great. But starting a day or two after my first serving of it my intestines are totally messed up. It says "gluten free" but nowhere do I see where it says "certified" or that little picutre of wheat with a red line through it. Jane
  13. JaneWhoLovesRain

    Dia. . . . For 5 Days

    UGH!! I am now on day 5 of diarrhea and am getting worried. Having dermatitris herpetiformis my GI symptoms with celiac have always been minimal. I accidentally got glutened earlier this year (didn't realize baking spray had wheat and was eating muffins in which the tin had been sprayed with this for about 3 weeks) and my rash which had been gone for 3 years came back, my tum-tum was okay though, no problems there. So I doubt this has anything to do with being gluttened but I wanted to ask if anyone has any insight or idea what this could be. Six weeks ago I started going to a chiropractor for something unrelated and he put me on this new diet, basically no carbs or grains, no sugar, no dairy, no nightshades, no chocolate and lots of fruits and veggies. Meat and chicken are allowed as are nuts and eggs. So for the last six weeks I've been eating a big salad of raw kale, spinach, carrots, cucumbers every day and in general have upped my fruits and other veggies. If the diarrhea started right after the diet I would say aha, but for the first 5 weeks I ate this diet with no problem at all. It wasn't until six weeks that this all started. I have no fever and my appetite is okay but I feel exhausted and achy, no energy at all. And I'm very worried, afraid I will never be well or that it is something serious. I have to say I'm not real happy with this diet and the last 2 days I have been eating foods that are on the no list (granola, tomatos, potatos but not a lot of these). This doesn't have any connection with the diarrhea cause that started several days before I strayed. I was on the thin side to start with and have now lost about 10 pounds and am seeing bones stick out that I never saw before - I don't like this at all. Do you think there could be any connection between the diet and the lousy intestines after having no problems for 5 weeks? Oh, one more thing. My magnesium was on the low side in January so I've been taking supplements for that. A couple weeks ago I had my blood retested and my levels are back up so I stopped taking the supplements last week, and it was a couple days after that the diarrhea started. I only mention this because it is kind of unusual. Usually people get di when they start magnesium, but not me! I get it when I stop. Jane
  14. JaneWhoLovesRain

    Dia. . . . For 5 Days

    As i figured they would tell me at emergent care, it's a "virus." grrrrrr It seems that is the standard medical answer for everything. This just doesn't feel like a "virus." So I'll wait a few more days and if not better, I'll go back.
  15. JaneWhoLovesRain

    Dia. . . . For 5 Days

    Now day 6 I thought I was better, I felt better and did lot of gardening this morning, then came in to eat lunch and suddenly felt sick and the di came back. Very distressed over this. The thought of some food carrying germ has come to my mind many times but I am super ocd about washing my fruits and veggies before eating, always worrying about getting listeria or e-coli or any of those things. I even wash pre-washed stuff, I even wash oranges!! And I won't nibble on a grape in the store to see how sweet or sour it is because I know they aren't washed. So I've kind of put the idea of of anything along this line aside, not to mention I haven't heard of any recent food borne illnesses. I know my diet can be rough on the intestines but for 5 weeks I had no problem at all, it wasn't until week 6 that I started to feel unwell. That is what is so confusing about it. If there was even the possibility of having cross contamination I would consider that but with a diet consisting mostly of veggies and fruits I don't know where the problem could be. I have a gluten test kit and tested my pumpkin seeds and Planter's mixed nuts and they both turned up negative. I have one more test left and I'd try it on something but I have no idea what to try it on. Orange juice?? I think I'll head over to the emergent care, hopefully they won't just brush my symptoms aside.
  16. JaneWhoLovesRain

    Angular Cheilitis

    It doesn't sound weird at all, but unfortunately I don't think I've had any new foods or prescriptions though it is hard to say cause it's been going on a couple years now and I can't remember what if anything changed two years ago. My two prescriptions haven't unless the inactive ingredients have changed.
  17. JaneWhoLovesRain

    Angular Cheilitis

    I kind of assumed it was a vitamin B issue and probably B6, but now after researching some more I see it can be yeast or bacterial. I have used bacitracin, cortisol and a couple of other things with no improvement. I decided to pick up some anti-fungal medication at the store yesterday but all they had was stuff to stop jock-itch. The only thing that went through my mind when I thought of putting that on my lips was ewwww. I read somewhere else that a couple people found relief with Vicks Vap-O-Rub so I tried that and I do think it is getting better. Jane
  18. JaneWhoLovesRain

    Angular Cheilitis

    I have no idea if my vitamin B complex is methylated or not, and I honestly never even heard of this. It is a CVS brand, buy one, get one free, so I would assume it probably is the more common kind. I don't see anything on the label that has either of these words (but it is gluten-free). Vitamin B12 isn't even part of this pill. But I did buy another separate B12 pill when I realized this one didn't have it. However I stopped taking the B12 because I found it had mannitol and I am very sensitive to that.
  19. JaneWhoLovesRain

    Help...so Confused

    Hi Loverbug - yes, I've been down the scabies road and so have many others here. The dermotologist I saw insisted it was scabies because it itched so bad, he said dh does not itch (he was very stupid). My PCP's PA also said it was scabies. I saw another dermo and had a biopsy for dh but it was negative, too late I found out she biopsied a lesion, not a clear area. This doctor said it probaly was not scabies. I live alone, I had virtually no physical contact in the weeks before my rash. Unless you can get scabies from a grocery store cart it would be almost impossible for me to have had it but they insisted that is what it was. No one ever did a scraping. If I had it to do over I would not have done the scabies treatment because now I will never know with 100% cetainty that it was dh I had. It was a GI doctor who told me I had dh/celiac but by the time I saw him the rash was 99% gone. I also suffer from vertigo attacks and because they may be gluten related it is not safe for me to take the gluten challenge so I was told to assume I have celiac and never eat gluten again. My biopsy came back as possible allergic reaction, which sounds similar to your possible medication or bug bite. At the timeof my rash I had been gluten-free for a year or two but I believe I had cross contamination. There are a lot of similarities between the two but also some differences. Both itch like the dickens, but dh itches more.. You wrote "so extremely itcy I serously wanted to die." I so well remember thinking that if I had to live like this for the rest of my life I would rather be dead. A classic symptom of scabies is that the rash is between the fingers; it dh it presents mostly on the knees, elbows and buttocks. That's where mine started but slowly spread elsewhere. Mine was exremely bilateral. Almost a mirror image from side to another. Another dh sign is burning a few hours to a day or two before a new area of breakout. Did you husband or daughter ever break out? If not, it would be quite unlikely that you have scabies, it is really catchy!! The dapsone could definitely be the reason things are getting better. Can you post pictures?
  20. JaneWhoLovesRain

    Dh Sometimes Look Like Poison Ivy?

    RIta - I had poison ivy quite regularly as a child and can easily tell the difference. They both itch terribly but there are differences. DH will be symetrical and the blistering isn't as obvious. For me the majority of the poison ivy would be gone in a week but DH seemed to last forever. Also my skin was much more sensitive and inflammed with DH. They felt different, but I don't know how to explain a sensation. Have you tried taking an antihistamine?
  21. JaneWhoLovesRain

    DH Photo Bank

    Hi - I just happened to log in today! When I told the GI doctor I saw (which wasn't unitl a couple of years after going gluten-free) all of my symptoms, he said he was 85% sure I had celiac based on my symptoms alone. He said the only one that didn't fit was the rash BEHIND the knees, he said it should be in the front of the knees. I personally don't think it makes much difference if it is front or back, my rash was very symmetrical and the itching was horrendous and all my other itchy spots fit celiac to a t. Dapsone is supposed to help right away from what I understand, within a couple of days there should be definite improvement. I've never taken it though, so I can't speak from experience, just from what I've heard others say. Jane
  22. JaneWhoLovesRain

    Gluten Free Since 2010 And Still Suffering.

    Hi - I'm wondering if you are eating anything that has the ingredients sorbitol or manitol or inulin. These give me terrible stomach and intestinal cramping and diarreah and nausea. They are right at the top of my do not eat list along with gluten. Edited to add - xanthan gum can do it also and unfortunately it's in a lot of gluten-free food as well as non gluten-free food.
  23. Personally I think if my dentist has sent me a similar letter 15-20 years ago I would have 1) not believed him for a second that I might have celiac and 2) freaked out cause it would be scary to get a letter like this. However, I will say that if he examed my mouth/teeth and then verbally told me his findings it would have gone over much better. He could have answered questions I had, reassured me I'm not going to die within the week, given me a print out, offered to write a letter to my doctor, and also told me that chances are I do not have celiac but I should perhaps be tested because there is a slight possibility of it, and it would be good to know this sooner rather than later so I can start treatment. I think if any medical doctor/dentist sees something that is not in his field of expertise but is concerning he has an obligation to inform the patiet (for instance if the eye doctor notices a bad looking mole on the tip of a patient's nose he needs to tell the patient to get it checked out and follow up to make sure this happens, unfortunately most doctors don't have time to make sure the patient follows up.) I remember going to a new dentist 15 years ago and the hygenist commented on something about my teeth, I don't remember exactly what it was other than some sort of abberation such as ridges or pitting or something that I now know can be indicitive of celiac but back then I hadn't a clue. This along with a lifetime of multiple cavities, root canals an crowns should have clued a dentist in somewhere along the line that something might be going on but other than this one hygienist there has never been any mention of anything at all by any other dentist or hygenist. Probably most dentists are as clueless about celiac as other doctors. SInce my siblings have similar dental issues but do NOT have celiat it may just be a genetic thing. (As an aside I just did a search of images of "teeth celiac" and I've got to say my teeth don't look like any of those. IMH, I think the vast majority of teeth problems are not celiac related)
  24. I'm talking about the candy, those little round pasel colored sugar thingies. Their web site says they are gluten free as to several other sites. But some of the packaging says they are processed in a facility with wheat etc. But other packaging says they are processed in a facilty with eggs, soy, etc, everything BUT wheat. It all depends on what store brand I am looking at (such as Target, CVS, Price Chopper, etc.) If it says wheat on it I don't buy them but otherwise I will pick up a bag every 2 or 3 months. I ask because I have been munching on these the past couple of days and today my intestines are rumbling something awful and I feel generally yukky. The only things different in my diet are the smarties and Utz sweet potato chips which clearly say "This is a gluten free food" on the bag Any thoughts? Is the label just a cyb kind of statement or should this be taken seriously. The ones I am eating do not mention gluten so I don't think that could be the problem. But I can't imagine what else it could be.
  25. JaneWhoLovesRain

    Are All Smarties Created Equal?

    Thank you for the explanation Peter. I appreciate it.