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Lecia

Type 1 Diabetic, Positive Blood, Rash, Negative Gi

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After 2.5 years of terrible itching and seeing Dermatolgists, Allergist, Primary Care, GI etc. I don't know what to do. The rash looks like DH and begins to get better when I remove all gluten. Rash showed very high esinophils but DH was not considered. My Blood tests Transglutinase antibody was very high at 63.5, Gladain IGG at 81.4 and Gliadin IGA at 97 so all was positive for celiac. I immediately went off of Gluten and rash showed improvement. I was off gluten for 7 days then back on for 7 days for Endoscopy which showed chronic gastritis but negative for celiac although I do have GI symptoms of bloating, gas, diarrhea. Now not sure what to do and thought I should continue on gluten as my rash begins to worsen in order to have Dermatitis Herpetiformis biopsy. Because I am Type 1 diabetic I would like confirmation on the diagnosis. I read you must be eating gluten 4-8 weeks for accurate biopsy of DH tests. I can't imagine enduring much more of this . If instead I stop all gluten to be comfortable my Doctors won't treat me for DH or confirm Celiac diagnosis. Recently I noticed my chin is going numb and my gums are starting to receed. My blood work shows anemia and low Vit D. It does seem no one doctor is putting this altogether and I wonder if I should go to a specialty center for diagnosing this disease to get some closure. Any thoughts would be appreciated as I am lost in where to go from here and my life has lost any purpose other than to deal with the symptoms. My heart goes out to all of you have had your life turned upside down and I appreciate everything I have learned from all of your posts.

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After 2.5 years of terrible itching and seeing Dermatolgists, Allergist, Primary Care, GI etc. I don't know what to do. The rash looks like DH and begins to get better when I remove all gluten. Rash showed very high esinophils but DH was not considered. My Blood tests Transglutinase antibody was very high at 63.5, Gladain IGG at 81.4 and Gliadin IGA at 97 so all was positive for celiac. I immediately went off of Gluten and rash showed improvement. I was off gluten for 7 days then back on for 7 days for Endoscopy which showed chronic gastritis but negative for celiac although I do have GI symptoms of bloating, gas, diarrhea. Now not sure what to do and thought I should continue on gluten as my rash begins to worsen in order to have Dermatitis Herpetiformis biopsy. Because I am Type 1 diabetic I would like confirmation on the diagnosis. I read you must be eating gluten 4-8 weeks for accurate biopsy of DH tests. I can't imagine enduring much more of this . If instead I stop all gluten to be comfortable my Doctors won't treat me for DH or confirm Celiac diagnosis. Recently I noticed my chin is going numb and my gums are starting to receed. My blood work shows anemia and low Vit D. It does seem no one doctor is putting this altogether and I wonder if I should go to a specialty center for diagnosing this disease to get some closure. Any thoughts would be appreciated as I am lost in where to go from here and my life has lost any purpose other than to deal with the symptoms. My heart goes out to all of you have had your life turned upside down and I appreciate everything I have learned from all of your posts.

Hi, Lecia, and welcome to the forum.

I do feel for you, it is a frustrating position to be in, and I wish it were not so common :(

When you say that the rash showed high esinophils, does that mean that they biopsied the rash itself, rather than adjacent to it as you would for DH?

Perhaps you could post all your test results here (with the lab reference ranges where appropriate) and let us look at your overall pattern. As you say, sometimes the docs have difficulty putting the whole picture together. If the doctors would do the proper testing in the first place we all would not suffer so much :o

I have not read that the you have to eat gluten for 4-8 weeks for the DH test, only for the blood test and endoscopy biopsies. If you have an active DH lesion it would seem that there are plenty of antibodies floating around to find. Is that what your dermatologist told you? Can you describe the rash for us? Any further information would help.

With your history of Type I diabetes, anemia, low Vit. D, things are pointing toward celiac or gluten intolerance at the least. Yes, it is important to get the rash properly evaluated, and if you live near to a celiac center I think that would be a good move if you can manage it, because so few doctors are knowledgeable about celiac disease.

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The ADA says that about 1 in 20 people with Type 1 have celiac. I think your drs need a refresher because they seem to be willing to let your entire small intestine flatten before they'll recognize something is wrong. :angry:

If you don't feel like educating them, and you have the opportunity to go to a center, you should go.

Keep in touch and tell us if you do. Lots of us are curious about what happens at the celiac centers.

Take care of you!

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I am learning how to partcipate in a forum so please bare with me. In response to your question regarding my tests in symptoms..I am happy to post additional as follows:

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Additional info on my tests and symptoms. Celiac panel blood test results; Transglutinase antibody result was 63. Reference ranges 0.0-19.9 is negative, 20.0-30.0 is weak positive and over 30.0 is moderate to strong positive. Next Gliadin IGG AB result was 81.4. Reference ranges = <20.0 negative, 20.0-30.0 is weak positive and >30.0 is positive. Finally, Gliadin IGA AB result was 97.1. Reference ranges = <20.0 is negative, 20.0-30.0 is weak positive and >30.0 is positive. According to my Dermatologist they had never seen higher numbers for positive Celiac. On to the dreaded rash. Periodically throughout my life I would get little bumps that would cluster on my elbows and around my lower leg/ankle area that was horribly itchy. I would scratch incessantly. When the the top was scratched off the bumps they looked wet and I would keep scratching until the skin bled and it still was terribly itchy and stinging a bit. I would use anything I could over counter. Doctors gave me various creams and antihistamines but nothing really helped. It seemed to come and go. I always had bouts of constipation and diarrhea with a bloated tummy and gas which has worsened over time. This took a back seat to type 1 diabetes diagnosed in my late 20's and a life of endometriosis. Now in my late 40's somehow I managed to enjoy life and appeared healthy most of the time but had many ups and downs. Then the rash started 2.5 years ago following a viral bout. My knees began to itch and small bumps were forming on my right leg knee to my ankle. It came with a vengance and just seemed to get worse and spread to other areas in clusters. I had been seeing my doctors but everyone was treating this as an allergic reaction. It spread to my elbows, low back and backside, on my arms and elbows. I couldn't sleep at night without icepacks. It has not responded to any kind of medications or by limiting my exposure to external triggers. Through all this I discovered I am allergic to Casein and am receiving shots for molds, dust mites, pollen etc. Now I have found by avoiding gluten the rash does improve but I think that if this is DH that I may need Dapsone or something to help me get over the hump. Currently it is slighty improved I believe from avoiding gluten over 7-10 days. My leg cleared but has tiny dark scar spots however now my back and backside are worse. I had to resume gluten for the DH biopsy on May 4. It starts with a itchy or stinging feeling that I scratch and the bumps kick in. The scratching continues until they look like little open sores some with blood and the surrounding skin is red and raised. Ice packs do tend to help a bit but only with the discomfort. It looks just like the pictures on the internet. Ocourse I don't want to be a type 1 diabetic with Celiac but I am up to any challenge if I could just get some closure on this. I sincerely appreciate all the education and experiences that are shared here. I never felt the need to join in a diabetic forum as that disease is pretty straight forward. I wish it was the same in diagnosing Celiac.

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Additional info on my tests and symptoms. Celiac panel blood test results; Transglutinase antibody result was 63. Reference ranges 0.0-19.9 is negative, 20.0-30.0 is weak positive and over 30.0 is moderate to strong positive. Next Gliadin IGG AB result was 81.4. Reference ranges = <20.0 negative, 20.0-30.0 is weak positive and >30.0 is positive. Finally, Gliadin IGA AB result was 97.1. Reference ranges = <20.0 is negative, 20.0-30.0 is weak positive and >30.0 is positive. According to my Dermatologist they had never seen higher numbers for positive Celiac. On to the dreaded rash. Periodically throughout my life I would get little bumps that would cluster on my elbows and around my lower leg/ankle area that was horribly itchy. I would scratch incessantly. When the the top was scratched off the bumps they looked wet and I would keep scratching until the skin bled and it still was terribly itchy and stinging a bit. I would use anything I could over counter. Doctors gave me various creams and antihistamines but nothing really helped. It seemed to come and go. I always had bouts of constipation and diarrhea with a bloated tummy and gas which has worsened over time. This took a back seat to type 1 diabetes diagnosed in my late 20's and a life of endometriosis. Now in my late 40's somehow I managed to enjoy life and appeared healthy most of the time but had many ups and downs. Then the rash started 2.5 years ago following a viral bout. My knees began to itch and small bumps were forming on my right leg knee to my ankle. It came with a vengance and just seemed to get worse and spread to other areas in clusters. I had been seeing my doctors but everyone was treating this as an allergic reaction. It spread to my elbows, low back and backside, on my arms and elbows. I couldn't sleep at night without icepacks. It has not responded to any kind of medications or by limiting my exposure to external triggers. Through all this I discovered I am allergic to Casein and am receiving shots for molds, dust mites, pollen etc. Now I have found by avoiding gluten the rash does improve but I think that if this is DH that I may need Dapsone or something to help me get over the hump. Currently it is slighty improved I believe from avoiding gluten over 7-10 days. My leg cleared but has tiny dark scar spots however now my back and backside are worse. I had to resume gluten for the DH biopsy on May 4. It starts with a itchy or stinging feeling that I scratch and the bumps kick in. The scratching continues until they look like little open sores some with blood and the surrounding skin is red and raised. Ice packs do tend to help a bit but only with the discomfort. It looks just like the pictures on the internet. Ocourse I don't want to be a type 1 diabetic with Celiac but I am up to any challenge if I could just get some closure on this. I sincerely appreciate all the education and experiences that are shared here. I never felt the need to join in a diabetic forum as that disease is pretty straight forward. I wish it was the same in diagnosing Celiac.

Your rash does sound like a typical DH pattern. They tend to be a deep red, with blisters that burst, both intensely itchy and hurting, and fade to a purple then white scar over time. It is such a shame they did not think of DH before, and did not tell you to continue eating gluten up until the biopsy (endoscopy and DH). It could have saved you much grief. I am fairly certain that you will definitely be diagnosed with DH and it is possible that had you continued eating gluten until your biopsy that could have been positive too (although there are sometimes false negatives there). (I did not see what your biopsy report said - if that mentioned inflammation or other indications of celiac disease.) The fact that the rash improved during the time you were off gluten is a good sign. You would have to give it longer than 7-10 days before considering taking medication in addition to going gluten free.

Regardless of what your testing reveals, I would definitely advise you to totally avoid gluten for a good 3-4 month trial once your testing is done. And by the way, make sure the dermatologist biopsies the skin adjacent to the lesion, not the lesion itself. Some doctors don't know this. I guess two weeks is not THAT far away to wait for this although probably every day is misery for you.

Keep in touch and let us know how things turn out.

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Your rash does sound like a typical DH pattern. They tend to be a deep red, with blisters that burst, both intensely itchy and hurting, and fade to a purple then white scar over time. It is such a shame they did not think of DH before, and did not tell you to continue eating gluten up until the biopsy (endoscopy and DH). It could have saved you much grief. I am fairly certain that you will definitely be diagnosed with DH and it is possible that had you continued eating gluten until your biopsy that could have been positive too (although there are sometimes false negatives there). (I did not see what your biopsy report said - if that mentioned inflammation or other indications of celiac disease.) The fact that the rash improved during the time you were off gluten is a good sign. You would have to give it longer than 7-10 days before considering taking medication in addition to going gluten free.

Regardless of what your testing reveals, I would definitely advise you to totally avoid gluten for a good 3-4 month trial once your testing is done. And by the way, make sure the dermatologist biopsies the skin adjacent to the lesion, not the lesion itself. Some doctors don't know this. I guess two weeks is not THAT far away to wait for this although probably every day is misery for you.

Keep in touch and let us know how things turn out.

Regarding my endoscopy the result was negative celiac but positve chronic gastritis. I did have a biopsy of the rash directly on a blister which was very high in esinophils reporting I may be allergic to a food, medication or contact allergy. No real help. Now I wait for the DH test and hope the next two weeks goes by fast. I do wonder myself if resuming the gluten will cause this to get really bad again. Wait and see....

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Regarding my endoscopy the result was negative celiac but positve chronic gastritis.

My guess is that that meant there was inflammation present, which is indicative also of early celiac damage. They really do want your villi to be totally flattened in order to say, "Yep, that's celiac." :o

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Your blood work was strongly positive, I am sorry your doctors are not savvy enough to diagnose you without torturing you more. Do make sure that the doctors do the biopsy correctly, bring this with you:

http://www.celiac.nih.gov/Dermatitis.aspx

With your blood work there are doctors that would have diagnosed you based on that as a positive as strong as your is pretty conclusive on it's own. Did they do any biopsies when they did the endo? If they didn't they weren't looking for celiac.

The meds for DH are very toxic and can have serious side effects so the best way to clear it is to be very strict on the diet and to be careful to avoid gluten ingredients in anything topical as well. I would advise you to go with the diet strictly after you are done with the testing. IMHO your body has given you the answer with your blood tests and your results on the gluten-free trial.

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Since my last posts in April I have had genetic testing which supports a Celiac diagnosis, a repeat of earlier blood work with positive results, a test for DH which came back negative but said there was still a 30% chance it is DH and indicated pityrosporum. The dermatologist treated me for a fungal folliculitis for 15 days ketoconazole body shampoo which had no affect. The rash is on my legs, hips, shoulders and back. My doctors agreed with me on starting a gluten free diet and prescribed nightly Doxepin 10mg.,betamethasone cream, daily zyrtek and Sarna lotion. I was told that Dapsone is used for DH but they won't prescribe it so I won't become dependant on it?Although I have been on a gluten free diet almost three weeks and have been on doxepin for three days the itching and rash continues. I receive gluten, casein, vegan soy free meals from Healthy Chef to be sure I am 100% compliant at least until I learn all I need to for my meal preparation. My question is...Does anyone know if doxepin will help alleviate the DH discomfort while my body heals with the gluten free food? The itching/burning has made life miserable and I am so tired of no progress. Even the diarrhea returned and I have no idea why? thanks for any help.

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I receive gluten, casein, vegan soy free meals from Healthy Chef to be sure I am 100% compliant at least until I learn all I need to for my meal preparation. My question is...Does anyone know if doxepin will help alleviate the DH discomfort while my body heals with the gluten free food? The itching/burning has made life miserable and I am so tired of no progress. Even the diarrhea returned and I have no idea why? thanks for any help.

Are you getting meals that you know for sure are made in such a way that no CC could be present? I looked at the site and couldn't find any specifically gluten free meals, not saying they are not there just I couldn't find them. You may want to contact them and ask if they prepare the gluten-free food in a dedicated space.

That said cooking gluten free really is not hard. Yes it does take some work at first to make sure the space your cooking in is safe but if you go with whole foods and avoid processed as much as you can at first it is easier.

Also have you made sure that all your toiletries etc are gluten free and did you check to make sure the meds that you were prescribed were? The doctors won't know you need to check with the companies that make the meds. If any are generic do make sure you check them at each refill.

It does take some time for DH to clear but you should stop getting new lesions after a pretty short time gluten-free unless you are getting CC somewhere.

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Thank you for the CC guidance. I will in fact check out the prepared meal company. Also, I did some further checking and found out many of my personal care products are not gluten free. Does anyone know of a gluten free products lists available for easy reference. I need to buy many new products and could use a cheat sheet. So far I found I need to change:

Laundry soap/softener, body soap,lotion, shampoo, conditioner, mousse,vitamins, toothpaste and maybe deoderant to name a few. Wow I guess I was heavily CCing. I wasn't sure of the importance of the external products and no my doctors never mentioned this. Also, I will be traveling soon staying in a hotel and wonder how to manage eating out? Can you recommend any sites or books on the subject. Again, thank you for enabling me to help myself get well.

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Thank you for the CC guidance. I will in fact check out the prepared meal company. Also, I did some further checking and found out many of my personal care products are not gluten free. Does anyone know of a gluten free products lists available for easy reference. I need to buy many new products and could use a cheat sheet. So far I found I need to change:

Laundry soap/softener, body soap,lotion, shampoo, conditioner, mousse,vitamins, toothpaste and maybe deoderant to name a few. Wow I guess I was heavily CCing. I wasn't sure of the importance of the external products and no my doctors never mentioned this. Also, I will be traveling soon staying in a hotel and wonder how to manage eating out? Can you recommend any sites or books on the subject. Again, thank you for enabling me to help myself get well.

Suave and Dove will clearly label gluten ingredients. If you prefer organic Giovanni shampoos and conditioners are gluten-free, don't know about the lotions. Garneir Nutritioneste is another company, I use their facial products, shampoos and conditioners, again do check the labels as some do have wheat but those are clearly labeled.

I like Tom's of Maine for toothpaste, I have used the Cinnimint but recently tried the cinnamin and clove because it has floride. I have found for some reason it seems to greatly help my dry mouth issues.

Not everyone uses gluten-free topicals but since you are still having issues it would be a good idea to switch at least until you heal.

Country Life and Now vitamins are gluten-free, I use the Hair and Nails formula and found it to be helpful especially when glutened as my autoimmune response includes heavy hair loss for a couple weeks after a glutening.

For laundry soap and softener I use Arm and Hammer Free and Clear or the Wegmans variety of the same.

You may also want to post the question in the products section of the board as there are others. Some will tell you that you don't need to worry about topicals but anything you get on your hands or that gets into your eyes or nose accidentally and comes into contact with mucous membranes through contact with your hands or dripping could be a problem. It takes very very little to keep the autoimmune antibodies going. Better IMHO to be as strict as possible so those antibodies can resolve.

In addition there are a few of us who do react to gluten distilled grains. You may want to avoid them until you are fully healed and then challenge by using them at least once a day for a week or two to see if you fit in that group. It seems that those of us who have neuro issues are the ones most likely to react to distilled gluten but that is just something I have noticed over the years here not something I researched. I know in my case a dose of distilled gluten grains gives me the same reaction as eating a slice of bread would.

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For traveling:

I print out all the restaurant menus(those with gluten-free menus) and slip them in a binder with clear plastic pocket pages. I also google something like "gluten-free dining ______ " fill in the city name. If you search for something like "Celiac Support Group ________" fill in the city name, you may find local support group websites that may have local restauraunt advice. Ours has a list compiled by members with little blurbs about experiences and recommnded dishes. I sometimes print these out and stick them in a binder. You can also e-mail or call the president for suggestions. I have done it and I know that our local president has gotten calls from out of towners seeking advice.

When we drive, I bring along shelf stable items to supplement my meals-like tuna pouches to dump on a premade salad from a fast food restaurant. I will also get a hotel room with a fridge and bring empty, microwaveable containers from home so that I can warm up leftovers from restaurant meals and a little travel size bottle filled with dish soap. A strong brand of paper towels works well to do the washing with and can be tossed. Also shelf stable items to supplement the hotel breakfast-I'll grab milk, yogurt, juice, fruit from the lobby and have gluten-free cereal, muffin etc. with us for kiddo.

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I attended a conference last weekend where Dr. Alessio Fasano spoke on celiac at length. During a question-and-answer period, someone asked if an endoscopic biopsy was absolutely necessary for a celiac diagnosis. Dr. Fasano explained that he and several other doctors would be publishing an important article very soon on how a biopsy is NOT required for a correct diagnosis. He stated that very few doctors know how to do a biopsy correctly, the pathologists oftentimes know very little about reading the biopsies correctly for celiac, AND, most importantly, the damage is not always within the reach of the endoscope--it can be 12 feet along the small intestine, where the scope cannot reach. Therefore, he states that out of the FIVE tests for celiac (initial symptoms, positive HLA gene test, a positive blood test, symptoms go away with gluten-free diet, and biopsy), you only need FOUR positive tests out of the five to make a diagnosis of celiac. You have four of the five that came out positive; therefore, according to one of the leading experts on celiac, you DO most certainly have it.

Now, with regard to DH, you must eliminate iodine as well as gluten. This is not well known to most doctors, but you can read about it in Dr. Peter Green's book "Celiac: The Hidden Epidemic." You'll recover from DH faster if you eliminate both elements from your diet. Keep in mind that iodine can be found in high concentrations in dairy products, but I've had good luck with organic dairy products. When you're at a restaurant, avoid foods that contain a lot of salt, because many restaurants use only iodized salt. You can buy non-iodized salt at the store. After you've controlled your DH, you can begin to add iodine back into your diet to see if you react to it. It usually takes BOTH gluten and iodine to cause a DH reaction, but I can honestly say that when I've eaten something with a high iodine content, I've broken out in a bit of DH. I wouldn't bother with a skin biopsy--there are very few dermatologists who know how to correctly do this type of biopsy. If your dermatologist tests the skin on the lesions themselves, the test will come out negative. The biopsy must be of skin to the SIDE of the lesion that is unaffected in order to get a positive diagnosis.

I'm sorry you've had the runaround, but that's par for the course with celiac and DH.

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Thank you for the important Iodine tip. Ofcourse I am using iodized salt everyday. My skin feels so terribly dry like I am wrapped in a tight itchy crust. I am itchy only in rashy areas but my entire body including palm of my hands and feet are horribly dry. I guess my dermatologist expects the doxepin rx to relieve some discomfort to get me over the hump for the next 3 months but I have my doubts. No more iodine for me for now. I was surprised I didn't see an improvement in the skin right away this time.

I appreciate you sharing the conference information about the GI tests. My Derm and GI want to convince me this is just a dermatitis but 2 plus years of misery burning and itching??? They mentioned a possible hormonal imbalance but offered no course of action. Has anyone seen improvements by supplementing vitamins that support the skin like biotin, Vit E etc. I imagine we would be low in supplements if our GI isn't working well.

It is tough not to panic with all the required changes while you are suffering with the symptoms and still trying to get through a regular day. Adjusting todiabetes and an insulin pump at 28 was much easier and straightforward. I can happily say after 20 years I am well controlled without any complications from diabetes. I hope in another 20 years I can say the same about Celiac....whew lots of prayer,discipline and humor required. Nice to know I have a group to correspond with and lean on. Thank you.

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As for vitamins and minerals, when I've had trouble absorbing them, I use transdermal A, D, E, K, and magnesium, and I use sublingual (under the tongue) B vitamins that I purchase at Trader Joe's. The transdermal fat-soluble vitamins are purchased online, except for Vitamin K, since I can find a creme at any supermarket or drugstore. I also take magnesium, calcium, and Vitamin D3 every day.

If you're really experiencing bad GI symptoms, it doesn't hurt to take probiotics for a while, too.

Good luck to you!

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Thank you for the CC guidance. I will in fact check out the prepared meal company. Also, I did some further checking and found out many of my personal care products are not gluten free. Does anyone know of a gluten free products lists available for easy reference. I need to buy many new products and could use a cheat sheet. So far I found I need to change:

Laundry soap/softener, body soap,lotion, shampoo, conditioner, mousse,vitamins, toothpaste and maybe deoderant to name a few. Wow I guess I was heavily CCing. I wasn't sure of the importance of the external products and no my doctors never mentioned this. Also, I will be traveling soon staying in a hotel and wonder how to manage eating out? Can you recommend any sites or books on the subject. Again, thank you for enabling me to help myself get well.

Does your rash look like mine?

Mine seems to go away when I take out gluten.

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