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bllamb47

Oxygen Levels And Dapsone And Dh

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My husband is on Dapsone for his skin condition. I have done the gluten free diet becasue he is Celiac for 5 years( helps his digestion greatly) and because the diet is supposed to clear up the DH. He has low oxygen levels which are effecting the nerves in his feet and legs and the doctor tells him to cut back on the Dapsone as this is taking his oxygen level down. But when he goes from one pill a day to every other day the DH comes back. Am I missing gluten someplace? Where can I get a list that tells me all the hiding places for Gluten? I read the labels but some of the stuff is unknown to me and I am not sure if it too is a gluten carrier. He really needs to cut back on the Dapsone and I need to get this diet right so his feet and leg pain decrease and his oxygen levels increase.

Help me please.

:blink:

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I just found out my oxygen levels are low too and I have been experiencing a little tingling in my feet when I touch them. I am not on any special meds but wondering what could help bring my oxygen levels back up. No other illnesses except celiac.

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What is considered a low oxygen level?

I just recently bought a fingertip pulse oxymeter, during a serious bout of Bronchitis. Because of all the bad ice storms a couple weeks ago I didn't get it in the mail in time to use it while I was still sick. Now I'm reading 99. Just curious.

best regards, lm

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Are you using iodized salt? If you are get some that is uniodized and make sure any supplements he is taking does not have iodine. Cut down or cut out seafood for now also. Iodine keeps the antibodies active in the skin. You need to be avoiding wheat, rye, barley and oats and that includes barley malt. If you go to the main page here you can find lists of safe and unsafe foods. Did you get a new toaster and replace scratched pans that have been used for gluten foods? If not do so now. Also check his toiletries for gluten ingredients. If you eat gluten do brush your teeth before you kiss and watch out for gluten ingredients in your toiletries and stuff like lipsticks. He may have to bear through a flare when he gets off the dapsone but it will pass. Sometimes if the flare is bad a doctor can prescribe a short term of oral prednisone to help him get through it.

link to forbidden items

http://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html

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My husband is on Dapsone for his skin condition. I have done the gluten free diet becasue he is Celiac for 5 years

Help me please.

:blink:

bllamb47, I don't have a medical back round, but is your husband getting the required blood labs that go with taking Dapsone??? My Dermatologist directed me to take Dapsone daily in the morning and that a smaller dose daily was much more effective then a higher dose every other day... Removing Gluten from his diet for 5 years should have relieved his DH issues... Just read the side effects/warnings, than decide if one should take it long-term...

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What is considered a low oxygen level?

I just recently bought a fingertip pulse oxymeter, during a serious bout of Bronchitis. Because of all the bad ice storms a couple weeks ago I didn't get it in the mail in time to use it while I was still sick. Now I'm reading 99. Just curious.

best regards, lm

Sorry, I don't know what is considered low but the 99 is 99%...and it only goes up to 100% so it looks like you're doing just fine. :D

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My DH flares from seafood. It is the iodine. Even dairy products with carageenan cause my DH to flare. Carageenan is made from seaweed so it contains iodine and it is in a lot of dairy products. It is a real puzzle to figure out, but these things make mine worse. Anything salty, like chips and nuts will also make it worse. You must use uniodized salt.

I would think after 5 years gluten free it would be under control. But not if the iodine has kept the antibodies active. Try strictly avoiding the iodine in addition to the gluten and see if it helps. Ravenwood is right!

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My DH flares from seafood. It is the iodine. Even dairy products with carageenan cause my DH to flare. Carageenan is made from seaweed so it contains iodine and it is in a lot of dairy products. It is a real puzzle to figure out, but these things make mine worse. Anything salty, like chips and nuts will also make it worse. You must use uniodized salt.

I would think after 5 years gluten free it would be under control. But not if the iodine has kept the antibodies active. Try strictly avoiding the iodine in addition to the gluten and see if it helps. Ravenwood is right!

Thanks ~ I would never have known about the iodine. We use sea salt . Is this okay?

This makes sense because he has always said that when he eats seafood he feels sick and his stomach is upset. I never knew why? I got the lists I needed and found some areas that were slipping by us. He likes ice cream and I wondered which one you recommend. He also likes hot dogs and I always look for those that say they have no MSG. But on the lists they say " No hot dogs at all". We eat gluten free tortilla chips that have sea salt on them ~ again is sea salt okay? We will try cutting the Dapsone by half and ask the VA when we are there next time. I know he should get off the Dapsone and we are working hard on being super careful about the gluten. Again :D thanks for your help!

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:)

Are you using iodized salt? If you are get some that is uniodized and make sure any supplements he is taking does not have iodine. Cut down or cut out seafood for now also. Iodine keeps the antibodies active in the skin. You need to be avoiding wheat, rye, barley and oats and that includes barley malt. If you go to the main page here you can find lists of safe and unsafe foods. Did you get a new toaster and replace scratched pans that have been used for gluten foods? If not do so now. Also check his toiletries for gluten ingredients. If you eat gluten do brush your teeth before you kiss and watch out for gluten ingredients in your toiletries and stuff like lipsticks. He may have to bear through a flare when he gets off the dapsone but it will pass. Sometimes if the flare is bad a doctor can prescribe a short term of oral prednisone to help him get through it.

link to forbidden items

http://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html

Thank you very much !

I did replace the pans at the start of this and am careful not to cross contaminate. We have a special bread machine for just his bread. Since it is just the two of us it is not a problem really but I didn't want to use the old one due to the bread I used to make.I don't wear makeup but do use face creams. What ingredients should I look for if their are not listed as gluten? I do eat gluten things so will be sure to brush my teeth as you said. Gee I would never have thought of this. I just recently got gluten free soap and shampoo for him .Should I also use it? What about clothes detergent? Should I watch this too? We used to use potassium in our water softener. Don't do this anymore. But would this also be a problem? Knowing about the Prednisone is also excellent because it can give us the courage to let the Dapsone go. He has been so afraid he can't make it without the stuff. He is miserable when it flares. He gets the blisters now a bit on the every other day dose but we are hoping that when we get this totally right he can go longer and eventually be off it.

So much to learn and I am so grateful for all you and this web site !

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I agree that iodine is probably causing the problem. You can find it in iodized salt (so it's probably on his chips, popcorn, crackers, french fries, etc.), asparagus, milk and dairy products (unless they're organic), and almost all processed foods.

Speaking of processed foods, here's a very complete list (over 100 pages) of processed foods that are gluten free:

http://homepage.mac.com/sholland/celiac/GFfoodlist.pdf

Lastly, to increase his oxygenation rate, you might try Brian Peskin's protocol for oxygenating all the cells of the body. I've been doing it for three years now, and my neuropathy is much improved. All you have to do is mix 1/2 teaspoon of organic flaxseed oil with either 3/4 teaspoon of grapeseed oil or safflower oil in some juice or a smoothie. This provides the correct ratio of parent essential oils (omega 3s and 6s) to fully oxygenate your cells. Two extra benefits to this is protection against cancer (which can't survive in an oxygen-rich environment) and heart disease.

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You asked about sea salt.

It says "Does not provide the necessary iodide" on the label....however, it causes my DH to flare, and it contains iodine, according to the article on DH at the home page of this cite, and according to Dr. Greene in Celiac the Hidden Epidemic, sea salt should be avoided as well as anything from the sea, due to iodine content.

I don't eat ice cream anymore due to the carageenan in most brands. I suppose organic would be OK, but I don't buy that so I don't know.

I gave up all processed foods due to the salt content, but only after I tried all of them and they caused my sores to react.

Yesterday I googled how to avoid iodine and came up with a iodine elimination diet that indicted that iodine is contained in the lining of cans that hold canned goods, therefore all canned goods should be avoided.

There seems to be no end to the ways iodine can activate sores. Since it is still happening to me I will be avoiding canned goods now.

I had to give up hot dogs and lunch meats too due to the salt content activating the sores.

I guess it is whole foods for me.

I Have noticed the condition of my skin and hair has improved in the two weeks I have been eating at least one cup of plain raw unsalted nuts to increase the good fats and protein in my diet. Seems to be helping anyway.

Good luck to you and to everyone with DH.

I read all the posts about DH with great interest.

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Don't forget that EVERYBODY needs some iodine in their diet. It's essential.

richard

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Don't forget that EVERYBODY needs some iodine in their diet. It's essential.

richard

Correct and we can safely add iodized salt back in after we have been outbreak free for a little while. We do not want to leave it out long term. My DH was severe and I was able to add it back in my supplements after a couple of months.

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I agree that iodine is probably causing the problem. You can find it in iodized salt (so it's probably on his chips, popcorn, crackers, french fries, etc.), asparagus, milk and dairy products (unless they're organic), and almost all processed foods.

Speaking of processed foods, here's a very complete list (over 100 pages) of processed foods that are gluten free:

http://homepage.mac.com/sholland/celiac/GFfoodlist.pdf

Lastly, to increase his oxygenation rate, you might try Brian Peskin's protocol for oxygenating all the cells of the body. I've been doing it for three years now, and my neuropathy is much improved. All you have to do is mix 1/2 teaspoon of organic flaxseed oil with either 3/4 teaspoon of grapeseed oil or safflower oil in some juice or a smoothie. This provides the correct ratio of parent essential oils (omega 3s and 6s) to fully oxygenate your cells. Two extra benefits to this is protection against cancer (which can't survive in an oxygen-rich environment) and heart disease.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I have been busy learning and researching . Amazed all the places I was missing the gluten in my hsbands diet. Copied off the foodlist you posted and today I was able to find some of the products that are safe. Went to the bottled Cokes for him for now due to the cans and the iodine problem. Got special hot dogs but wow those were 6 dogs for 5.00. Won't be doing that much !

Okay so here is my outreach from the organic oils you recommended and Brians Peskin's protocol for oxygenating all the cells of the body. Picked up the oils at our Herb store and also saw a book about Oil Pulling Therapy. Have you ever tried that ? Also we own a Bed and Beakfast and a guest we had the past 2 nights suggested I look into www.drugfreehelp.com because they use this man for their health and MSG issues and they use the Coconut oil as well as baking soda water. I also picked up some Cellfood essential silica formula today as the Herb shop recommended it for the neuropathy.

Have you ever tried the magnetic foot pads ? I wondered if they work or not. Keep it coming ~I am learning and absorbing all you guys tell me like a sponge . THANKS !!! :rolleyes:

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I don't have the energy to be into all of the alternative therapies, but others might help you with that.

I want to tell you some simple ones that help me.

I took Dapsone for two weeks and had a horrible reaction so I had to stop.

Since then, I got really strict about the iodine avoidance, but as others point out that is to be temporary as humans need iodine.

What I have done that has helped my sores since stopping Dapsone, is fairly simple and food related.

Mango- Read the health benefits of Mango. I'm not kidding here. With the list of vitamins and minerals mango provides, it appears to me to be the perfect Celiac food. Vitamin A, beta carotene, iron,potassium, C and I'm only listing a few.

So I have been eating two Mango's a day and my skin is better. In my opinion, the yellow mango is the only one worth eating, but if you like the others, I think the health benefits are the same.

The other thing is Nuts. They provide a lot of essential fatty acids and since I started eating them my skin and hair are better. Inflammation is way down, including my DH sores. It's really strange but true.

I eat between one and two cups of nuts a day and they are loaded with Vitamin E and other good stuff. It sounds like a lot, but it seems the more I eat them, the more my sores heal. I thought my DH was going to take a long long time to heal post Dapsone therapy, but I have been pleasantly surprised by these two additions to my diet.

Just a little thought. I hope your husband like nuts and Mango's. If you try it, let me know if it works. At first I thought it was strange but when I googled the health benefits of mango and then nuts, I decided to make them a big part of my diet. And it seems really to be beneficial...I can feel it in the way the sores are less inflamed.

If you think it is a weirdo comment, just ignore. :) Or should I say , if you think I'm nuts...igore me! But if I found a recipe for healing, I'd like to share with others! :rolleyes:

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After months of standing still, my DH has been improving for a few weeks now. My strategy has been to avoid processed food as much as possible because there are always risks, and gluten free options are expensive.

I've introduced seafood back into my diet with no apparent problem.

I think that the additional risk from excluding iodine to control DH is that it hides the possibility that we are still getting gluten at too high levels. Same with Dapsone, for that matter.

Figuring out where the gluten hides is a long learning experience, in my experience.

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I don't have the energy to be into all of the alternative therapies, but others might help you with that.

I want to tell you some simple ones that help me.

I took Dapsone for two weeks and had a horrible reaction so I had to stop.

Since then, I got really strict about the iodine avoidance, but as others point out that is to be temporary as humans need iodine.

What I have done that has helped my sores since stopping Dapsone, is fairly simple and food related.

Mango- Read the health benefits of Mango. I'm not kidding here. With the list of vitamins and minerals mango provides, it appears to me to be the perfect Celiac food. Vitamin A, beta carotene, iron,potassium, C and I'm only listing a few.

So I have been eating two Mango's a day and my skin is better. In my opinion, the yellow mango is the only one worth eating, but if you like the others, I think the health benefits are the same.

The other thing is Nuts. They provide a lot of essential fatty acids and since I started eating them my skin and hair are better. Inflammation is way down, including my DH sores. It's really strange but true.

I eat between one and two cups of nuts a day and they are loaded with Vitamin E and other good stuff. It sounds like a lot, but it seems the more I eat them, the more my sores heal. I thought my DH was going to take a long long time to heal post Dapsone therapy, but I have been pleasantly surprised by these two additions to my diet.

Just a little thought. I hope your husband like nuts and Mango's. If you try it, let me know if it works. At first I thought it was strange but when I googled the health benefits of mango and then nuts, I decided to make them a big part of my diet. And it seems really to be beneficial...I can feel it in the way the sores are less inflamed.

If you think it is a weirdo comment, just ignore. :) Or should I say , if you think I'm nuts...igore me! But if I found a recipe for healing, I'd like to share with others! :rolleyes:

Thanks for the information on Mango's. I am going to buy some today and give them a try.

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I don't have the energy to be into all of the alternative therapies, but others might help you with that.

I want to tell you some simple ones that help me.

I took Dapsone for two weeks and had a horrible reaction so I had to stop.

Since then, I got really strict about the iodine avoidance, but as others point out that is to be temporary as humans need iodine.

What I have done that has helped my sores since stopping Dapsone, is fairly simple and food related.

Mango- Read the health benefits of Mango. I'm not kidding here. With the list of vitamins and minerals mango provides, it appears to me to be the perfect Celiac food. Vitamin A, beta carotene, iron,potassium, C and I'm only listing a few.

So I have been eating two Mango's a day and my skin is better. In my opinion, the yellow mango is the only one worth eating, but if you like the others, I think the health benefits are the same.

The other thing is Nuts. They provide a lot of essential fatty acids and since I started eating them my skin and hair are better. Inflammation is way down, including my DH sores. It's really strange but true.

I eat between one and two cups of nuts a day and they are loaded with Vitamin E and other good stuff. It sounds like a lot, but it seems the more I eat them, the more my sores heal. I thought my DH was going to take a long long time to heal post Dapsone therapy, but I have been pleasantly surprised by these two additions to my diet.

Just a little thought. I hope your husband like nuts and Mango's. If you try it, let me know if it works. At first I thought it was strange but when I googled the health benefits of mango and then nuts, I decided to make them a big part of my diet. And it seems really to be beneficial...I can feel it in the way the sores are less inflamed.

If you think it is a weirdo comment, just ignore. :) Or should I say , if you think I'm nuts...igore me! But if I found a recipe for healing, I'd like to share with others! :rolleyes:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Strange you should mention the nuts. Sometimes our bodies just know what they need. He used to eat unalted peanuts all the time as his Tv snack each night. But then with the runs we thought maybe to much fiber. Didn't know about the Celiac he had then so didn't connect the runs to that. So back to the grocery store for Mangos and nuts. He said the last Mango he can remember eating was in Hawaii back in the Vietnam days.

Say do you know if there is any connection between Celiac and DH and Agent Orange? The VA is asking about all his ailments and we don't know about any connection on this.

He has had the flu for the past week so he has not eaten and today is the first day. So it was rather a natural detox for him and we start all over today with the proper diet and all the wealth of wisdom I have gained thus far. He really respects you and all who are dealing with the DH and trusts what you say. If you can go without the Dapsone he say's then you must have the right path as it is an absolute horror and so painful the sores he got without this drug and knowledge how to stay sore free.

To another great day of learning and today I am checking into the recipes section of this web site to make menu plans. At first when I started talking with you guys I felt overwhelmed and really guilty about my failings in the past to get him off the gluten. When we go to the VA next we are asking for all sorts of dermatologist appointment and neuro docs too. We think this needs to be checked out more in depth. If you ask you receive and if you seek you shall be find. So again thanks for all your help. I will let you know about the nuts and mangos for sure. :rolleyes:

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I don't know anything about the agent orange connection. I will google that when I have some time.

Don't feel guilty at all for what you didn't know. I kept myself and my son sick for 7 years never making the connection that it was gluten all along. I struggled with guilt too. I just try to be really grateful for the days of wellness ahead. And for feeling good today. And for helping others if I can. You are helping him a great deal by doing research and trying things and being commited to finding out how to keep DH down.

Hang in there and yes, ask for all the specialists you can get through the VA. Check things out. Initially when I went off Dapsone, the Dr. put me on a short course of Prednisone. I don't know if that is an option for him, but if you see the Dr. you could ask. It did really help. Want you to know about that so you can ask in case it is an option for him.

You're doing great. Just keep trying and moving forward. And if you stumble across something that works, let us know! Yes! To another great day of learning!

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Re: the Agent Orange query. Celiac requires a triggering stress or illness in most of us. If the Agent Orange caused illness that could be a trigger but so could the mental stress of being in a war zone.

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