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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Am I Doing Something Wrong? Can't Take This Anymore.
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Ok so the bleeding DH on my back is pretty much scabbed over but now it is ALL over my chest and shoulders and some on my face cheeks and rear cheeks. I am not eating gluten..unless I am being CC somehow. It burns so badly, I can't wear a bra and my shirt actually hurts that it makes me cry.

If I am not eating gluten, why the DH, I don't get it.

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Have you tried iodine elimination? A lot of DH'ers find it makes it a zillion times worse. And DH hangs around for a long time, unfortunately. :( - longer than GI antibodies, that's for sure.

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I haven't tried low iodine yet....It sounds next to impossible. Isn't there salt in everything? I will if I have to though.

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I am working on this myself. It is almost impossible but it can be done. Apparently most salt is NO iodine in stuff you buy. But sea salt isn't. I bleed so bad it scares me. I thought I was dying the first time my leg bled it was running into the toilet I was scared to death. The Derm was like....Oh it happens..>WHAT?

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I feel your pain Gluten-Free. I'm going through one of those myself which began in early Sept. & stillllllll going. I think ....... but won't finish the sentence for fear of jinxing myself. :lol: :lol: I did that once before & actually said it & BAM! the dh went nuts. So shhhhhhhhhhhhh......

Okay. DH can present at any time for up to 2 years ( & some references say :ph34r: 10 years :ph34r: :ph34r: :ph34r: ) after going gluten-free. The antibodies have to get out of the skin. So this can happen & no, you're not doing anything wrong. If my hubs & I didn't have a gluten-free household & we did not prepare ALL our own food, 99% of which is whole foods; then I would be totally freaking (okay, I am totally freaking but not b/c I think I've been cc'd) thinking that I was getting glutened from somewhere. But since I am 110% positive I'm not getting gluten from anywhere then I know this is just what it does.

NOW. What I would really like to know is how the freaking antibodies get out of our skin? I have never found any reference for that. But if I had any clue & could help it along....... Boy & HOWDY ---- I would do whatever it was! WHATEVER!!!!!!!

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NOW. What I would really like to know is how the freaking antibodies get out of our skin? I have never found any reference for that. But if I had any clue & could help it along....... Boy & HOWDY ---- I would do whatever it was! WHATEVER!!!!!!!

Leeches come to mind :rolleyes:

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Leeches it IS! I'll run right out tomorrow & get a couple thousand. :lol: :lol: :lol:

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Ok so the bleeding DH on my back is pretty much scabbed over but now it is ALL over my chest and shoulders and some on my face cheeks and rear cheeks. I am not eating gluten..unless I am being CC somehow. It burns so badly, I can't wear a bra and my shirt actually hurts that it makes me cry.

If I am not eating gluten, why the DH, I don't get it.

I found I was eating what I thought was corn chips and found out later the restaurant had changed to flour/corn chips. Maybe you can review your food intake? I was a salt freak and stopped using any salt unless it was sea salt w/o iodine. I am on Dapsone and I really feel it has been a life saver for me. I suffered for 7 months the intense itch, sting, burn and yes the blood. It seems these lesions bleed more than anything I've ever experienced. Must have something to do with the properties of DH.

I'm having a bit of a new breakout (in the place of healed lesions) on my lower back. I've been applying Tolnaftate 1% to dry these places. It has petroleum to smooth it on. . . seems to dry but not flake.

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I think that I am eating totally gluten free. I only eat a few processed things that are gluten free. I guess it just takes tine for the dh to go away.

I appreciate all of the help.

Do any of you not feel well when the DH is really going? I'm just really tired and achy and have no energy.

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I think that I am eating totally gluten free. I only eat a few processed things that are gluten free. I guess it just takes tine for the dh to go away.

I appreciate all of the help.

Do any of you not feel well when the DH is really going? I'm just really tired and achy and have no energy.

Yes, I find that happens to me too. Also I have noticed that when a dh flare is really getting going I actually have a little bit of a temperature. The temp. goes back to normal in a day or two.

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Same here with the low temp. Blows that we have to deal with this but it really is comforting to know that we are not alone in it all.

Do you ever get DH on your scalp? MIne is now coming down my forehead. I look and feel awful.

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Oh Gawd! The scalp!!!!!!!!!!!!!!! It's horrid just horrid! There are crusts & where there aren't crusts there is oozing. The hair gets stuck to your head. I will wake at night & the pillowcase is so wet with oozing I can't find a dry place for my face. In the morning the pillowcase is stuck to the pillow. It's disgusting & makes me feel disgusting. I've taken to washing my hair each & every night b/c the more dried ooze & crusts that build up seems to be the more it itches. I get ones just out of the hairline & they look awful. I have also had tiny, quick ones on my face & so far....... I live in fear of the day I get big old honkers on my face.

And my ears....it gets in my ears, on the edges of my ears, on my earlobes, INSIDE my pierce hole of the earlobe.

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I've actually been doing pretty good, thankfully! Even itching behind the knees is a rare thing for the last couple of weeks. I think I may be absorbing iodine better. For salt, I've been using the Morton canning & pickling salt. It has NO additives, not even for anti-caking. I quit sea salt for a while, went back to it for a bit and think I had some issues with it. Otherwise I do eat salted butter and eggs with yolks just fine. But I did have some issues with 1 brand of butter I tried, so there was something in there that bothered my system.

I did want to add that I'm still avoiding the sulfites, as well as MSG type ingredients. That helped a ton, also.

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Just one more thing to look at...some laundry soaps may contain gluten. I know Whisk is one of them.

Stress can also bring out DH. Maybe the stress of the holidays brought yours out? I hope it goes away for you. It's miserable!

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I too have rashes--have for awhile. It definitely got better when I went gluten-free, peanut free, and although I don't do the "low iodine diet"--I do not add *any* salt (or spices) to food...I only use pepper. At first, I thought things tasted bland--now I like it. When I do eat something that hubby fixed with salt--my rash gets more inflammed.

Another thought--this may or may not apply to anyone but--we can have other allergies that give us crusty, itchy, scaley, bleeding and oozy rashes. I found out my cell phone cover (rubber) was affecting my ears/neck/. I changed shampoo, conditioner, hair dye, and laundry soap a long time ago--but still had the rash on my neck, ears, forehead. It appears that contact allergies "spread" and go "further" than just where the contact of it is.

Now, I am working on getting rid of the rubber in my house (easier said than done)--cell phone case is gone--and in almost two days my ears are better since getting rid of it :D Shhhhh ;)

But, I still have a rash on my forehead--Guess where I found rubber elastic??? Last night--on my shower cap that is right where the rash on my forehead and scalp is (I also lost hair there too) :rolleyes: Sooooooooooooo, I am skipping on the leeches :lol: and buying a new hairbrush (new one with no rubber on it) and looking for something to cover my hair at pm for when I wash my face... Today!!! :D

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Well, if iodine is in salted processed foods, and if your only possible source of CC is processed foods, you can kill 2 birds with one stone right there.

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Are you eating anything with vanilla in it? While I don't get sick like a real glutening, I itch! It is the kind of vanilla that is supposed to be safe for us. Dairy and soy also give me gluten like symptoms, itching, dry skin, hair loss, sleep problems, etc. So, no gluten, including vanilla and white vinegar, no soy and no dairy... skin and hair does great and no itching.

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    • Pain wise a glutening celiac gets me more central gut pain and much worse with sharpness, urge to vomit, gurgles etc. UC is more along the the outside edges of your abdomen from the sides, lower area around the belt line, and upper area right under the rib cage, and is more of a boat and pleasure pain like your intestines are huge feeling.  UC triggers alot more gas, and makes you want to lie down I get the urge to massage and press on the pressure areas as it seems to help.
      Timing wise Celiac glutening I notice within 20-60mins and main vomiting starts in 1-3hours after eating it. UC flare you get it like 4-18hours or later depending on transit time of your food. A glutening will normally result in both a celiac reaction and a later UC reaction. For me a gluten CC or consumption issue also causes neurological symptoms, this is not true for some people but for me I also have a gluten ataxia, so the anxiety, panic, fog, mind looping, numb hands, loss of coordination or straight up motor loss is definite sign for me. Others will have to keep track with a food diary to nail down there own as every person can have a slightly different reaction.

      I also find with UC I do not directly vomit, Sometimes with UC it can trigger constipation and if not remedied in 12-24 hours leads to m system backing up and vomiting. Celiac can also cause me constipation but there is a slight difference in where it seems to get stuck at first. Hard to explain but you can sort of feel it. Also I find a gluten celiac response will result in a week or more of constipation issues. Starting mid section then moving to the outside gut area and  but some people do not get these and get D instead. So this is not very reliable.

      UC flare ups for me with my damage also always have bloody stools, worse flare ups its not just streaks but clots. Red and Dark red show it is in the large intestines. If you get tar like black  and red it is either a sign it is way back in the large intestine or in the stomach or small intestine. This makes my Anemia SOO much worse. Imagine how you feel with the loss of blood coupled with inability to efficiently absorb nutrients like iron and magnesium

      Thing to recall is UC is mostly the large intestine while celiac is mostly the small, so symptoms and trying to get the feeling of where the problem is can help.  Also if you get a glutening expect to have the UC flare up right after the celiac flare up.

      NOTE it is hard for me to say still, on the exact details and clarity, it has been since june of last year that I had a major gluten consumption issue. UC I get more regular but without the direct comparison in a while my memory is a bit iffy. Just trying to recall those exact pains and feelings from that last time. Also UC seems to wax and wane in and out while almost always being present for months in the background you just feel a bit off in the gut. SO many triggers, I felt that for years I swear til I went to this keto diet and dropped all fruit, sugar, carbs, and grains. Could have been the anemia, but I think it was more of a combination of the inflammation, bleeding, gas, and just being uncomfortable.
    • Hi!  I wasn’t sure where to post this inquiry so I’m sorry if it is in the wrong place!  My blood work was negative for celiac although biopsy was suspicious.  I have severe joint pain and GI issues so have decided to eliminate all gluten to see if that helps. I hear I may need to supplement my diet with vitamins to make up for what I’m missing, but I don’t know what vitamins they are!  Can anyone help? Thanks, Sarah
    • Hello everyone Thank you so much for all your contributions and tips, I'm sorry for my absence but I've had a big project deadline to complete. Over all, I think things are on the mend for me too.  I was quite cynical at the doctors' approach at first. I'd have much rather had a scope to find out what was happening, instead of being prescribed three months of omemprazole or zantac to see if it helped.  Unfortunately the gen on the zantac contraindictaions list stipulated that zantac should only be prescribed if your doctor is sure what is wrong with you, as it might otherwise be covering up cancer!  Those aren't the things a hypochondriac wants to read!  Anyway,  during this that time I've taken one months of omeprazole (20mg) and as that gave me D I changed to two months of zantac (most days only 75mg a day, but doubling the dose on odd occasions when the burn seemed to come back).  During much of this period I've tried to keep my diet low in fat, spicy food, drinking very little caffeine, drinking strong camomile and slipper elm, and I think a key help has not eating for a 12 hour stretch overnight because I think that really helps the stomach heal.  I hope my system is finally recovering and hope to come off the zantac towards the end of this month.  It is hard to phase these things out slowly when you are already on the minimum dose, but all the tips about marshmallow, licorice and slippery elm etc will no doubt come very helpful then!   I have come to the conclusion that this is a new weakness in my system and I'll have to be very careful to avoid gastritis in the future, by no longer taking asprin (unless the doctor ever tells me I have to), not over doing fat, greasy food, etc.  The last time I drank some sparkling wine or fizzy drinks was awful, so I shall avoid them too. Throughout this time probiotics have helped me with the C, upper left quadrant pain  and wind that the zantac seems to have produced! And of course all the help from you guys. Will keep you posted Whitepaw on life post-zantac!
    • Ennis, can you tell us how to tell the difference between a UC flare and a glutening? It must be confusing for folks diagnosed with both to know at first which it is that is happening.
    • i ended up with dairy intolerance over 10 years ago, and celiac over 4 years ago, then this year got ulcerative colitis diagnosis.

      Dairy issues are caused by the fact the enzymes to digest it are produced by the tips of your villi, these are damaged first and most by the disease and you end up with dairy intolerance. Some people can add it back after a few years of healing. Other allergies and intolerance issues will also develop the longer your on gluten.....it will really just shorten the list more, as damage ramps up, digestive issues arise, and your body starts confusing other foods as a culprit and developing allergies.

      Your UC complicates things and is honestly going to make you much madder then the Celiac as per its flare ups. UC common triggers are gluten, soy, dairy, and in some cases like mine it is triggered by carbs and sugars like glucose and fructose.....yeah I had to go grain free and change to a nut, seed, leafy low carb veggies and egg white diet.
      Since you can not have nuts but do not mention meats I can say your lucky. I developed a issue where I can not digest meats due to my damage. I might suggest you look into a keto/paleo diet. Where you eat meats, eggs, leafy greens. a higher fat/protein diet.

      Now after 8 months on this diet I am seeing even more improvement and had have several issues resolve and am putting on weight.
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