JaneWhoLovesRain

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.

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

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.

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.

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.

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.

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.

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!

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.

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.

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

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.

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.

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

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.