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Tamesis

Dh?

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About 6 years ago I had a positive blood test for Celiac.......They told me to start a gluten-free diet, which I did, and then they did a biopsy while I was gluten-free, had been for a month (Wish I'd known better!!!), and of course, it was negative. Fast forward to the past two years, I've had severe GI issues, and they decided to test again for celiac. Negative blood test, negative biopsy...However, due to the past positive blood test, and familial history, my GP decided I should go gluten-free and see...Well, once month in, my GI symptoms are SOOOO much better.

But, now, the past few days, I have this AWFUL painful itching. Not really much to see though...On my leg I have pinpoint red crusty spots, and then on my arm I have little red spots, but I don't think they're really pustules? And finally, on my bum, I have, and have actually always had, about half a dozen little scabs, almost like popped pimples? That never go away....my whole bum is ALWAYS really, really itchy. Thinking back, I often have really, really itchy skin. Does this sound like DH? Should I push to get a biopsy, to potentially help with diagnosis? Does it make sense thought that it would pop up AFTER I've gone gluten-free? I'm sure I've been getting gluten from CC, I haven't been 100% careful, however with this rash will be, because it's the WORST thing I've ever dealt with! I can't sleep, it's awful! Or should I keep glutening myself until I get a skin biopsy?

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Hi Tamesis,

If you scan through some of the recent threads here, you will see that several people have had experiences/symptoms just like yours. There is widespread ignorance about coeliac issues and DH among the medical community, apparently across at least three continents.

If you are mostly gluten free testing won't help, you normally need to be eating a lot of gluten over a period for the tests to work, and even then there will be a lot of false negatives.

Unless you have some compelling need for an official diagnosis, then I'm sure everyone here would join me in urging you to go gluten free as soon as possible. And not half way, relief for your DH will only come from the complete absence of gluten.

In my case the GI symptoms disappeared in 3 to 4 days, the DH symptoms have got better at a glacial pace over three years.

But it's quite possible that new areas of DH will pop up even when you are gluten free, as the factors that cause DH stay in your skin for a long time. Generally the DH should trend better over time if you are on the right track however. You might be one of the lucky ones that clear up quickly.

Best wishes.

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Tamesis, I'm so sorry this is happening to you.You've been getting glutened for 6 years when you could have been healing for 6 years & now dh. I'm shaking my head over the medical community who tests you yet sets you up for failure of the test. How many times have we heard this?

Tamesis, is it that all fired critical to you to get an official diagnosis? Because if it is then you will need to gluten yourself for 3-4 months in order to get tested again. And the skin biopsy for dh returns a 37% false negative even when it's performed perfectly.

The sooner you quit gluten & be strict about it the faster you will heal & the less time you will have to deal with the rash which certainly sounds like dh. DH loves to keep people awake at night! You may find relief from limiting your iodine intake temporarily. Many with dh respond to limiting the iodine. I certainly do. Google thyca.com for a list of foods & low iodine diet. Iodine is needed to cause the chemical reaction in the skin. But you can't stay on the low iodine diet forever.

Since you keep using the word "bum" then I assume you are a Brit. Can you find Orajel there? It is for toothaches. It contains 20% Benzocaine. Or you may be able to find some pain relieving cream at the drugstore which contains the same ingredient. It will stop the itch when you apply it.

Lastly, Yes, dh can pop after going gluten free since you state that you are getting cc'd. So really you are not gluten free YET. As long as you are getting cc'd then it is doing damage to your villi. Please, for yourself, get very strict about the diet.

And yes, I do believe your rash is dh. It sure sounds like it.. Not every person presents exactly the same with the rash but one thing is for sure --- it itches like nothing anyone has ever dreamed of. And you had a positive biopsy of your gut. And you have already had relief of the GI symptoms by going gluten lite.

We are here to help you when you have questions or just want to rant or vent or cry. Or laugh.

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All excellent advice above! I would like to second the suggestion to avoid iodine for a while and then cut back on it thereafter. Whenever I get even slightly cc'd, I break out in DH--and I've been strictly gluten free for eight years! Not very much is known about DH, and the doctors seem to know the least. I wouldn't bother with a biopsy because the dermatologist will probably not do the biopsy correctly anyway.

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ARGH, I had written out a great long message, and somehow deleted it!

Thanks so much everyone for your help. I'm content with my diagnosis of "non-celiac gluten intolerant", however in my little head I have Celiac...Diagnosis or not! I'm trying to get the official pathology reports of my intestinal biopsies to see if there was ANY villi damage....Rumor has it some path.'s need more damage than others?

Anyways, since the DH has reared its ugly head i've gutted my kitchen, replaced most of my cookware, run EVERYTHING i'm not replacing through the sanitation cycle of the dishwasher, cleaned all the cupboards, etc., and am hoping that will help with the CC. I know I wasn't as strict about gluten-free as I should have been....Party because DH is skeptical about the whole idea of CC and I was letting him get to me....But now, I'm 100% on board, and will be gluten-free for life!

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ARGH, I had written out a great long message, and somehow deleted it!

Thanks so much everyone for your help. I'm content with my diagnosis of "non-celiac gluten intolerant", however in my little head I have Celiac...Diagnosis or not! I'm trying to get the official pathology reports of my intestinal biopsies to see if there was ANY villi damage....Rumor has it some path.'s need more damage than others?

Anyways, since the DH has reared its ugly head i've gutted my kitchen, replaced most of my cookware, run EVERYTHING i'm not replacing through the sanitation cycle of the dishwasher, cleaned all the cupboards, etc., and am hoping that will help with the CC. I know I wasn't as strict about gluten-free as I should have been....Party because DH is skeptical about the whole idea of CC and I was letting him get to me....But now, I'm 100% on board, and will be gluten-free for life!

Good for you!

And I forgot a few things:

Google thyca.org for low iodine diet

Also stay away from MSG

Lastly, for say the first 3 months just stick to whole foods only. It will give your gut time to begin healing & give you time to get oriented to all the hidden places gluten lurks & get some of the rules down in your mind. If you try to jump right in buying everything at the grocery store just reading labels for gluten then you will be heading for mistakes.

Good luck & keep us poted!smile.gif

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Well if you had a positive blood test for coeliac six years ago, and you have DH almost certainly now, and if you respond to a gluten free diet, you ARE coeliac and don't let anyone tell you any different.

Many of the people who develop DH don't have as severe gastrointestinal symptoms as other people with coeliac. That doesn't mean we aren't coeliac, it's just that we have different problems to overcome.

If you have a rash I'd keep photographs for future evidence. I wish I had.

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Itchy is right. DH = celiac. I don't tell people I haven't had an "official" diagnosis. I just tell them I am a celiac. If they want to pry & I have time to explain to them then I will tell them I am self diagnosed but that rarely comes up. I know I diagnosed myself correctly & the diet proves it. Furthermore iodine withdrawal stops my dh & makes my diagnosis even more correct as if that were needed.

And just because we have dh doesn't mean our villi don't get damaged when we get glutened.

Oh & don't forget to clean your can opener. Or get a new one color coded just for gluten-free use. Your hubby can use the old one for gluten stuff. BTW, around here dh means the rash not your husband --- that's a mind twister --- but I'm used to it now.cool.gif

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Haha, I love it, I used DH twice in the same post, both referring to different things! ;) Glad you guys were able to figure it out! Thanks so much for the support. Great idea to take pictures, i'll do that! Not that I want a picture of this butt roaming around. ;) Would you say that things in the grocery store that specifically are labelled gluten-free would be OK to start, or just whole foods regardless? Mostly i'm using whole foods, and if I don't see "gluten-free", I don't eat it...We've also put my daughter on a gluten-free diet, and i'm starting ton wonder if SHE has DH too! She has a small blister like area on her inner wrist, that has been there for at least 6 months, gets bigger and smaller, but is always there.....Anyways...She's gluten-free, and if she responds well (GI symptoms) we'll just be calling her Celiac without a "diagnosis" also. What is a diagnosis really anyways? My doc is convinced both of us are Celiac, but just can't give the label without a positive biopsy what a load of bunk.

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Personally I try to eat whole foods as much as possible. I trust labelled manufactured food, but avoid if it is costly. I am very skeptical about restaurant meals that are labelled gluten free, unless I have a high level of trust that the staff really knows what they are talking about. Similarly I am skeptical about the assurances of hosts at parties, etc. Generally they mean very well but don't have the knowledge to know what is truely gluten free. When cooking be careful of spices, some like curry powder use flour as a carrier.

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For about the first 3 months you should stick with whole foods. There are 2 major reasons for this. 1) To give your gut time to begin healing. If you give it too much to process too fast then you may find yourself having problems still. Think of it like this: When someone has been very, very ill then you don't start them right out on Tacos or popcorn or buffalo wings; instead you start them on soft foods, soups, bland foods. Think of your gut as having been that sick person. You see?

2) Eating whole foods will keep you from getting glutened right off the bat. It will allow you time to learn where all the pitfalls are. You also won't be trying to overload yourself with reading every label & getting overwhelmed. Believe me, you will get overwhelmed enough or at least most people do. I know I did. Less stress & less mental stress is less physical stress. It's all connected.

As to your other questions about foods labeled gluten free this is only my opinion but I will tell you how I feel about it. There are many ways foods are labeled gluten-free & they are not all the same animal. There are cans, boxes & wrappers labeled gluten-free because they are "considered" inherently not to have wheat, barley or rye in them. Take for example oatmeal or rice cereal or rice cakes. The question is; are those foods processed in a dedicated gluten-free facility or are they processed on shared equipment in a non gluten-free facility? Or anything in between. Are they tested for gluten content? Are they cross contaminated (cc'd)? Some labels state that the product is processed on shared equipment or in a dedicated gluten-free facility ~~~ some don't tell you anything. Personally, I won't touch the things which are labeled gluten-free ONLY because I don't have the information I need in order to make an informed decision. (Well, there are a few exceptions to my rule but it gets too involved to go into). Now, if the product states it is gluten-free AND that it's processed in a dedicated gluten-free facility then I will feel safe. Then there are products which have the logo on them which means they have been certified gluten-free by the GFCO ~~~~ http://www.gfco.org/ Those things are trustworthy. They are tested etc.... you can read about it at the link. These and many more things are the things you need to learn about & come to your own decisions about what you feel safe consuming. I may be considered overly cautious but the way I feel about it is that I have dh & the antibodies are going to be in my skin for ??how long ~ 6 mos., 2 yrs., more??? before I am free from them & there is no way I want to get cc'd or glutened because I want a particular product. (I already made that mistake). Every time I get glutened or cc'd it puts me farther from that day when the antibodies leave my skin. Unless I can find a corn chip, or taco shell, or whatever that is processed in a gluten-free facility or I feel that the facility is taking great pains & doing testing to ensure there is no cc then I won't eat them. Plenty of people here do. That's their right. I don't feel comfortable doing that yet. One day I will try it I'm sure but that will be AFTER the antibodies have left my skin for a good while.

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I have had terrible luck with restaurants. They will assure you that they know what you are talking about, then bring your steak with a piece of bread perched on top. There is one restaurant where I live that is owned by a guy with celiac. He is not overly sensitive to CC, but he always warns new customers that the facility is not dedicated so he cannot guarantee no CC. I have eaten there several times and sometimes it is okay, and other times not so much. I pretty much avoid eating out. When I get depressed I just picture the oozing, stinging, itching sores I used to have all over and it gets me through.

Prepared foods: I'm finding myself looking for things that have the fewest ingredients with names I can understand. I refuse to eat anything prepared on equipment shared with wheat. If the item has carrageenan or annatto in it I find that it makes me itch. I have learned to bake gluten free, but in the beginning the xanthan gum used in gluten-free baking really bugged my stomach. Over time that has gotten better. The easiest way to get better is to go the whole food route: grilled meat, salad, vegetables, rice, fruit. I like soup. I also had to make my dog gluten free because I was getting CC from her food being in the house. Surprisingly gluten-free has given my little old dog new tricks. She has no more joint pain and dropped some weight and she is feeling great...go figure.

Best of luck to you and the quickest possible healing.

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Thanks again everyone for all your suggestions! This week has been a good, whole food week. :) I think my biggest struggle is time....I work full time evenings, so often dinner is leftovers, however, I'm not around to make dinner the night before to HAVE leftovers! LOL> I spent yesterday making a bunch of ready to cook freezer meals, and a couple modified family fave's. It's definitely an adjustment, but we're working with it...In fact, just as I'm thinking now, I had a pickle today, and honestly, have NO idea if those are gluten-free! And it was a homemade one, so no ingredient list, so I guess the rest of the jar is going in the trash! Shoot!! Every day things get a little better, and a little easier. :)

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The only problem I would see with pickles is the type of salt used ~~~ iodized or non iodized? Oh, & there seems to be some conflicting info. & opinions on sea salt. Some here say it's full of iodine, some say it isn't ~~same for the info. on the internet. Personally, I'm not willing to chance it with dh. I figure if the seafood is full of iodine & I can't eat it then what makes sea salt so special that it would NOT be full of iodine? When in doubt..... I avoid.

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