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Member Since 29 Oct 2010
Offline Last Active Jan 25 2013 09:50 PM

#824360 Does This Look Like Dh To You?

Posted by on 19 September 2012 - 12:08 PM

You are absolutely right it will help someone else. There were many times I sat there in the dermatologists office crying and saying that my migraines were connected to the face sores...and my "fibromyalgia" is worse when the sores are there. And I would say "These sores are burning my brain." They would just shake their head and tell the PA who was standing there wanting to help, "She is a skin picker. We call it neurotic excoriation." Then he would turn to me and say, "You see how you are scarring your skin?" and walk out of the room. I was angry because I knew he was wrong but I couldn't explain it. None of it made sense until you look at what Celiac is and what it does. Then it all made sense. My sores didn't look like classical DH either. I'm so glad he brought a few PA's in to look at yours. You probably saved a lot of lives and spared a lot of people misery by letting them see the way your DH presents. Thank God that Dr. recognized your DH.
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#822958 Not Many Symptoms

Posted by on 11 September 2012 - 01:19 PM

You might be lucky and caught it before it flattens you.
Actually the number of symptoms doesn't seem to correlate with positive biopsies. Many people never knew they had Celiac at all due to having no symptoms but their biopsy came up positive. There is something called Silent Celiac where no symptoms are felt subjectively by the person with Celiac, yet they have the damage consistent with Celiac.

Other people have all kinds of symptoms and yet they test negative...go figure.
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#822783 Does This Look Like Dh To You?

Posted by on 10 September 2012 - 04:11 PM

Yes, DH can present like hives.
I had long raised red welts that eventually started weeping and oozing. It burned and itched like crazy. I now have long linear scars where the skin was scratched and they are white and de-pigmented where the DH healed. So yes DH can present as welts and rashes without blisters. I have Hashimoto's and a goiter too.

I was treated for chronic hives and chronic impetigo, and chronic acne and it was finally decided that I had neurotic excoriation. No meds helped. I diagnosed myself when I read about DH here. It did not look like DH to the Dr.'s who saw me. But they were wrong. Yes, even though the literature says that you shouldn't diagnose yourself with DH because it can be dangerous, I went ahead and did it anyway because no Dr. would. And guess what? It is more dangerous NOT to diagnose DH than it is to diagnose it yourself and get well.

They really know nothing about this disease.
Try to get diagnosed by testing but if they won't just go gluten free.

I can't see your pics either...but your description is eerily close to the way my DH presented. Many years into having the mysterious hives, I developed the classic watery blisters of DH, but it still wasn't recognized.

Read the DH forum, ask questions, and be aware that you may have to diagnose yourself if your Dr. doesn't.

Iodine is an issue for some of us. It keeps the antibodies active in the skin.
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#822373 Is It Possible To Get Dh In Genital Area?

Posted by on 08 September 2012 - 06:22 PM

I tried zinc oxide and it did nothing for me either.
Try Benzocaine ointment over the counter...Walgreens makes one called Pain Relieving Ointment and it works temporarily for the burning stinging itching pain of DH.
Do you eat eggs or dairy? Both can be high in iodine.
Are you following the thyca.com low iodine diet to minimize iodine? I ask because they give a lot of information about where you could be getting iodine that you would never suspect. Such as canned goods. Canned goods have a lining that contains iodine. I knew at one point I was reacting to canned goods. At first I attributed it to the fruit then I realized green beans from a can did the same thing. Then I found out about iodine in the lining of cans and ditched the canned goods.

Do you live with gluten eater's or kiss a gluten eater? This includes humans and animals.
If you are still having active lesions after 6 years gluten free, I'd recommend getting a biopsy done to make sure it is DH and not something else. It doesn't sound like it has ever cleared. Have you ever been free of the rash since 2005?

Re-visit everything. Pots and pans...if you didn't change them, change them now. Clean the cupboards again, check personal products. Re-new the colander and the toaster.

Are you eating products that are certified gluten free? Some things are made on shared lines and that is not required to be disclosed. Only Certified is tested for gluten, so I would only use Certified gluten free anything at this point if I were still having DH.

Just throwing some ideas out there for you. Hope you feel better soon and thank you for sharing so others know how DH can present.
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#822164 How Long After Glutening?

Posted by on 07 September 2012 - 01:52 PM

The reaction can last anywhere from a few days, to a few weeks, to a few months. DH can be sensitive to iodine which can cause the antibodies to remain active in the skin. you may have to limit iodine in order to heal. If you find that you do have to limit iodine, Thyca.com is the low iodine diet. You can use regular salt and stop using iodized salt to see if that helps some.

For relief of pain and itching you can get Walgreens brand of Pain Relieving Ointment that has Benzocaine in it. Solarcaine or Bactine also work. It is only temporary relief though, and you have to reapply often, but it can get you through the bad nights.

DH is very sensitive to cross contamination. Be sure you are very careful now and if you haven't already you will want to check your personal products too.

Your description of this is very much in line with DH.

Limit iodine, get super strict on gluten free, apply pain relieving ointment.

It took me two years to heal my DH, but the reactions from a glutening only last a few weeks now, and they are not nearly as bad as they were. It usually occurs within one week of an accidental glutening. I have had to limit iodine to heal DH.

I hope you feel better soon.
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#821380 Friend With Possible Celiac?

Posted by on 03 September 2012 - 05:02 PM

Not all of us are "properly" diagnosed with Celiac disease. If she was feeling ill and exhibiting the symptoms of Celiac her aunt may have "helped" her by telling her about Celiac. I told my sister and she has a child with symptoms who didn't test positive but feels better off of wheat. Therefore, that child is self-diagnosed because her aunt told her about it. Wheat can still be a legitimate issue if she hasn't tested positive but finds she feels better off of wheat. Some people are self-diagnosed because their Dr. won't test them, or doesn't believe the symptoms are consistent with what they believe to be classic Celiac. There is also gluten intolerance that isn't detectable by testing.

If she is eliminating fruits I wonder if she is feeling badly and looking for a cause? The gluten she has been ingesting could be the cause if she is indeed Celiac. As to whether she would be able to eat it and not have a "reaction" well, yes, she could. If she had been fairly consistently gluten free, the antibodies would have subsided and she may not react to gluten as she did before. This is normally a very good thing for a Celiac. However, it can be dangerous when individuals choose to assume that it means they are no longer Celiac or no longer sensitive to wheat. The damage can happen without overt symptoms. It used to be that Dr.'s thought children outgrew Celiac for that very reason, they were no longer reacting and appeared to be able to eat it normally. Until later they learned these are the children who grew up to have the lymphoma's and cancers and auto-immune diseases associated with Celiac disease when it is not controlled by a gluten free diet.

I think it is wonderful that she has a friend like you who is willing to help her figure this out and who wants to understand. Hypochondria is extremely rare. Normally people who appear to be hypochondriac are seeking answers to why they do not feel good. I would encourage you to continue to be supportive of her and maybe do some talking about how it came to be that her aunt thought she had Celiac. Does it run in the family? Is she willing to get tested? Many people opt not to test knowing they have to ingest gluten for a period of time in order to have a chance to test positive.

Maybe she just needs help identifying gluten in foods and eliminating it and the other intolerances will resolve once she is truly gluten free. Obviously she is looking for answers too. Maybe this will be a good opportunity for her to either get diagnosed or learn to be completely gluten free. Feel free to invite her here. Thanks for caring enough to write us and ask questions!
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#819948 I Think I've Been Glutened

Posted by on 26 August 2012 - 11:29 PM

I don't know if it helps or not but I wash and rinse my rice until the water runs clear. Then I cook it in the microwave...the regular rice....it just takes 10 to 15 minutes.

Or go with certified gluten free....if there is such a thing in rice.
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#819152 Whoa, Yes, I Am A Bit Overwhelmed

Posted by on 22 August 2012 - 12:22 PM

Yes, I agree with Bartful. Don't buy a lot of things until you know you can tolerate them. I would suggest you find a recipe you want to try and then buy what you need for that recipe and that way you won't be investing in a lot of stuff you don't really like. For example, I hate bean flours. Any mix with bean flour in it got donated or trashed outright regardless of how expensive it was. I developed the sensitivity to Soy shortly after getting rid of gluten, so out went all the flours and gluten free products with Soy! I outright trashed them after I read how bad soy is for people.

I would suggest Udi's Multi-grain for you and hubby and Rudy's gluten free bread for the kids. It's softer and more like white bread in texture. The other thing to do is buy one mix for example Pamela's, but there are others and see if you like the things it makes.

Be careful because Rudy's also makes gluten bread.

I didn't feel much like baking so I stuck with Elana's Pantry for recipes because her recipes are very simple and good and they don't take a thousand kinds of flour or ingredients. That got me by just fine.

Good luck with all of it. It can be overwhelming at first. But try to keep it simple and try just a few things at a time. You can always stock up when you know you really like something and can tolerate it.
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#818805 Losing Hope...

Posted by on 20 August 2012 - 04:53 PM

Yes, it was very fitting that you were poster #100 Kswan and I want to thank you for continuing to ask questions because I have learned a lot. Thank you Bubba's mom for your information on here and especially for your last post because it gives hope on the losing hope thread. I did not know that could happen and it makes me feel good to know you have been there and survived and it really was Celiac that caused it and that has to mean a lot to Kswan too, so thank you.
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#818635 The Wise Alternative

Posted by on 19 August 2012 - 04:52 PM

Also, if he has the cure why is he selling gluten free crackers on his website?

:lol: :lol: :lol:
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#818626 The Wise Alternative

Posted by on 19 August 2012 - 03:52 PM

There is no cure for Celiac or Gluten Intolerance.
They are only controlled by eliminating gluten.
Don't believe the hype...in my opinion. :)
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#818605 Can I Eat Regular Oats?

Posted by on 19 August 2012 - 01:45 PM

Hi Sage,


Unfortunately all regular oats are contaminated with wheat due to the way they process them, so the only thing safe for Celiacs is Gluten Free Oatmeal. Your friend is getting a lot of gluten eating those products, they are not safe for Celiac/Gluten Intolerance. The rash you get may come and go quickly now, but it could be DH which is Dermatitis Herpetiformis and it is the skin form of Celiac. It is very sensitive to cross contamination. If you are going to assume you have Celiac based on your reactions and the fact that your dad has it, then you would want to be careful of cross contamination also.

Sorry, it's a bummer not to be able to eat regular oatmeal. Some with Celiac cannot eat oats either, even if they are certified gluten free, but it doesn't sound like that is the case for you.

Whether or not you have symptoms, if you are Celiac, then even trace amounts of gluten will be doing damage to your intestines. The bloating and the rash are consistent with Celiac. I hope you do some reading here and keep asking questions anytime! Tell your Celiac friend about us too, it sounds like she might want to do some reading about Celiac before she ends up with more damage and symptoms. I'm not trying to lecture...just concerned and we are willing to answer any questions you guys may have. Hope this helps. :)

Oh! And the question about shared facility where they also process wheat. Some of us react to those products and cannot eat them either.
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#818469 What Is Wrong With Me ? :/

Posted by on 18 August 2012 - 04:08 PM

sorry for the late reply mam, i wasnt trying to be rude:p no more pumpkin seeds for me:( <3 btw, the package said handled in a facility that handles wheat:(<3

Oh my gosh! That's not rude at all. :) This is your thread so you can do what you want with it and reply when you want to!

Oh no! I react to products that are processed in a facility that also processes wheat too. I want to tell you that some products say "gluten free" on the front, and on the back it says...processed in a facility that also processes wheat. You will want to know that for future reference. :)
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#818380 2 Year Old With Dermatitis Herpetiformis

Posted by on 17 August 2012 - 08:26 PM

Yes, it can be overwhelming for sure. You might want to do some reading about DH. I didn't go into the fact that some people do not get healing without limiting iodine. But since Iodine is a necessary nutrient and since you are dealing with a child, you would definitely want to talk to the Dr. about the iodine issue with DH. Iodine tends to keep the antibodies active and some of us have to limit iodine in order to heal properly. This isn't always the case, but it is definitely true for some of us. I know you are feeling overwhelmed, but I would be remiss if I didn't mention the iodine connection with DH. The rash can take a long time to clear, but it seems that you were able to get it under control just by eliminating gluten, so you might be alright without limiting iodine. I just wanted you to know because this is a life-long condition and there may be a time when your child's DH reacts to iodine even if it doesn't right now.

I will send you some links about DH.
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#818362 Posts

Posted by on 17 August 2012 - 06:25 PM

Hey Skittles!
Click on your name "Skittles" at the top of the page.
Then click on "My Profile".
Then go to "Edit My Profile" which is a box halfway down on the right side.
On the left you will see options to choose from and you want to choose "Change Signature".
When you do that, then you can type in any quote you want to use or your symptoms or diagnosis...whatever it is that you want to show as you "signature" that will automatically be at the bottom of your posts.
Ask back if you have any trouble!
Welcome! :)
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