If You've Had Dh While Gluten-Free...

[lizk]

I am not yet diagnosed and have an appointment with a GI next month. I cut out gluten on my own because of some symptoms I was having and nearly all of my symptoms disappeared with the exception of soft/loose stools which is why I decided to see the GI to be sure it isn't something else. I know at this point since I am gluten-free any blood tests will be worthless without eating gluten, so basically I want to be sure it is nothing else, not necessarily looking for a Celiac dx at this point. I will most likely remain gluten-free because it makes me feel better. No more bloating, D, or headaches (those seemed to be my worst and most consistent symptoms).

I did have some itchiness while I was still eating gluten and at the time had never heard of DH so I never really noticed if the itchy bumps I had then were related to gluten (although I do remember one specific time when I had really itchy ankles and had digestive symptoms that same week). However, since I have gone gluten-free, I have had many times where I have some itchy bumps and I still really don't know if it is DH or not. Mine doesn't sound "typical" although I know it can take many forms - but mine is usually just a couple of bumps here and there but very itchy. Sometimes symmetrical but not always.

For those of you who have had DH while gluten-free - I guess due to CC or iodine or whatever the reason - do you find that the itchiness goes away sooner than when you had DH before you were gluten-free? I have only really paid attention to these itchy bumps since going gluten-free - I am keeping a food journal - so I don't really know how long it lasted before, but I see some people say they lasted weeks or even longer. I ate shrimp on Friday night and last night I woke up in the night with REALLY itchy bumps on both ankles. It was so itchy I couldn't sleep and nothing would help, I tried some tea tree oil and also some hydrocortisone cream. Finally I took some Benadryl and I don't know if that stopped the itching or just knocked me out, but I finally got to sleep. This morning, the tiny bumps are still there but are not nearly as itchy. I also occasionally get itchy bumps on my legs, arms, or torso and they seem to act the same way - really itchy for a while but usually stop itching within a day or so. Itching seems to be worse at night or right after a shower.

Has anyone else experienced anything like this?

[rosetapper23]

It could be that you are eating minute amounts of gluten still (from CC). It doesn't take much to activate the DH. And, yes, I think what you have may, in fact, be DH.

As for the soft stools, it took 18 months being gluten free for me to get past that. What finally helped me in that regard was a product called Metagenics UltraClear Sustain Medical Food. My doctor prescribed it, but I have also seen a Metagenics booth at celiac conferences. It made all the difference in making me completely well. I noticed a vast improvement in the first week alone, and I only put in my smoothie (one scoop) every morning for six months.

[itchy]

Many people with DH do not have GI symptoms as bad as other coeliacs. My GI symptoms went away almost immediately when I became strictly gluten free.

That's the key. It's very likely that you are not totally gluten free yet, because for most of us it takes quite a while to learn all the hidden sources of gluten. Though maybe you are more clued in than I was.

For me, the question in your third paragraph doesn't apply. My DH hasn't come and gone. Once it started it stayed for 2 and a half long years.

There appear to be a lot of skin conditions that may related to gluten intolerance that may or may not be DH.

[Charli61]

A question, I am celiac and have been gluten free for close to a year, no DH for 'most' of that time I am lactose intolerant and lately seem to have DH type rash again, could anyone tell me if that might be from corn? I am NOT impressed if I have to give up corn, but after 3 exclusion tests, I am wondering? Any ideas? Thanks!

[Di2011]

Corn appears to make my DH worse especially if I have a high dose over a short time. I now avoid it completely.

I am iodine lite. I occasionally have butter/cheese/milk but not very much at a time. I am still avoiding eggs for the same reason - a temporary flare immediately after eating high iodine foods.

Given that the anti-bodies can remain for years (some say up to 10years) it is not unthinkable that DH could arrive after going gluten-free. I'm no guru but cc and/or other triggers (iodine, sals, corn etc) could surely trigger the condition.

I was always an itchy scratchy type and avoided glutens without consciously realising it (avoided breakfast, didn't like pasta/pizza etc). So I believe I've probably had it for decades but going to work in a bakery 18months ago triggered the head to toe bad case that I am now still trying to get under control.

[ciamarie]

To the OP, yes I've noticed that when I get an outbreak of sorts, it's itchiness is less than before I went gluten-free. It's also for a much shorter duration (i.e. maybe a few hours, as opposed to always...) And yes, worse after a shower or in the late afternoon and evening. Hang in there, it does get better!

And to Charli61, possibly yes from corn, but I'd suspect if so that perhaps there's some CC with the corn? Is it specifically labeled gluten-free, or no? If no, you may be getting gluten and that would likely make it act up.

[lizk]

Thanks for the replies! It is all very helpful to hear your experiences while I am still trying to figure all this stuff out. I just looked up "foods with iodine" because I thought it was just salt but I guess not! I found on the list cranberries, yogurt (which I don't eat anyway, I'm DF for now), navy beans, strawberries, and potatoes! I eat a lot of potatoes and I just bought some strawberries for snacks for the week

[Ryniev]

I've only been gluten-free for 5 or 6 weeks. My dh rash started back in July, the first few weeks I didn't notice much of a change but all of a sudden I'm having rapid improvement. I look like a giant mass of scar tissue but I'm having less new bumps and they tend to go away if I manage not to claw them into a bloody mess. I did have one really bad break out all over my back (I think I was glutened at a restaurant) and I look like I have some kind of plague but before, it would never really clear up and this time (even though it's still scabby) it seems like it's going away much quicker.

[Charli61]

Thank you all! there is a possibility of cc I guess, it wasn't specifically gluten-free stated. I didn't know much about the iodine end of things... I will pay FAR more attention to that in the future.

[squirmingitch]

You will hear everyone say there is a very steep learning curve to the gluten-free diet & when you have dh then the climb becomes twice as steep with watching iodine.

[squirmingitch]

I got tired of trying to remember all the foods to avoid when going low iodine so I began making a list & taped it on the kitchen wall the other day. I know I'm missing a few things on it, some of the beans for one. This is a compilation from a number of sites.

Dairy, egg yolks, seafood, carragheenan, garlic, coconut (which would include flour, oil & milk, spinach, swiss chard, asparagus, lima beans, turnip greens, turnips, water chestnuts, potato skins (so that would include potato flour since it contains the skins), navy beans, sesame seeds, strawberries, watermelon, blueberries, cranberries, organ meats, iodized salt of course, ham, corned beef, summer squash.

And don't forget to check your vitamins & supplements for iodine & not all of them will state they have iodine in them so it's best to check with the company.

[Charli61]

I got tired of trying to remember all the foods to avoid when going low iodine so I began making a list & taped it on the kitchen wall the other day. I know I'm missing a few things on it, some of the beans for one. This is a compilation from a number of sites.

Dairy, egg yolks, seafood, carragheenan, garlic, coconut (which would include flour, oil & milk, spinach, swiss chard, asparagus, lima beans, turnip greens, turnips, water chestnuts, potato skins (so that would include potato flour since it contains the skins), navy beans, sesame seeds, strawberries, watermelon, blueberries, cranberries, organ meats, iodized salt of course, ham, corned beef, summer squash.

And don't forget to check your vitamins & supplements for iodine & not all of them will state they have iodine in them so it's best to check with the company.

Thank you for the list (Yikes!!) I have to admit there are a lot of my groceries on that list! I am a vegetarian as well, and my list of 'can haves' seems to be diminishing rapidly! But if I can feel good and not have an explosion of that rotten DH rash so be it! I believe I will cut and paste and put it up in my kitchen too...

[Charli61]

squirmingitch, I just wanted to tell you I have printed the "list" and will stick it up on the fridge ASAP

[itchy]

I wouldn't assume that you have to remove iodine from your diet right off the bat.

It affects some people, not others. If you remove iodine from your diet without some indication that it is actually a problem then you are eliminating many valuable nutritional foods and limiting your lifestyle. And you could be setting yourself up for other problems, as iodine is essential to good health. There is a reason it is added to our salt.

And remember, iodine is not the cause of DH, just involved in the process. The real culprit is gluten.

If you are one of those people badly affected by iodine, that is another problem, and I can only offer you best wishes on your doubly difficult path.

[Di2011]

Thank you for the list (Yikes!!) I have to admit there are a lot of my groceries on that list! I am a vegetarian as well, and my list of 'can haves' seems to be diminishing rapidly! But if I can feel good and not have an explosion of that rotten DH rash so be it! I believe I will cut and paste and put it up in my kitchen too...

It may be good to also start a 'low iodine' list as well. Then you can have something to refer to when you are considering meals, shopping etc. It will also be a 'positive' in a big world of down'ers at the moment.

Di

[lizk]

Thanks for the list squirmingitch!

I wouldn't assume that you have to remove iodine from your diet right off the bat.

It affects some people, not others. If you remove iodine from your diet without some indication that it is actually a problem then you are eliminating many valuable nutritional foods and limiting your lifestyle. And you could be setting yourself up for other problems, as iodine is essential to good health. There is a reason it is added to our salt.

And remember, iodine is not the cause of DH, just involved in the process. The real culprit is gluten.

If you are one of those people badly affected by iodine, that is another problem, and I can only offer you best wishes on your doubly difficult path.

This is a good point, too. I think what I'll do for now is keep a list of high iodine foods just so I am aware (I had no idea about some of those!) and that way if I get any bumps I can look in my food journal to see if there is a connection. It will help me be more aware and I can keep iodine intake sort of balanced, like not eat a meal with say coconut shrimp, with potatoes and asparagus on the side, and strawberries and blueberries for dessert! I am not having severe outbreaks, just a few here and there (but man they are itchy when I get them), so it will definitely be helpful to be aware of my iodine intake.

[Charli61]

Thanks, you all have made good points! What I thought I would do, (made sense to me) put the list up on the fridge and pay attention to when I have the miserable itchys and then look at the list to see if it is likely that I had too much (or any) of the things on the list. I thought that might be a way to sort of confirm what is causing these 'flare ups' Could be coincidence, so I am just carrying on with my usual food (not worrying about iodine that is) and I'll see how it goes! I will post again if/when I have an actual iodine type determination! Thank you again for all your help!

[squirmingitch]

I will mention that I do have some iodine ---- when I've been watching the iodine really closely & have the outbreaks under control (none for a week) then I will go ahead & have selected foods with iodine. !/2 glass of milk, maybe a piece of ham --- just maybe 2 or 3 things in a weeks time. I seem to be able to get away with that. I consider them as "treats" for myself.

Also I forgot to mention that you have to watch things in brine such as the corned beef, olives, pickles. These things in & of themselves would be fine but you don't know if they used iodized salt in the brine unless you contact them to find out. Remember to get unsalted PB or any nut butters.

[Charli61]

I will mention that I do have some iodine ---- when I've been watching the iodine really closely & have the outbreaks under control (none for a week) then I will go ahead & have selected foods with iodine. !/2 glass of milk, maybe a piece of ham --- just maybe 2 or 3 things in a weeks time. I seem to be able to get away with that. I consider them as "treats" for myself.

Also I forgot to mention that you have to watch things in brine such as the corned beef, olives, pickles. These things in & of themselves would be fine but you don't know if they used iodized salt in the brine unless you contact them to find out. Remember to get unsalted PB or any nut butters.

thanks I didn't think of pickles etc. and of course my p.b. has salt added.......Oh well, I will pay attention and just go by what seems to affect me. Have a good day Squirmingitch!!

[pricklypear1971]

thanks I didn't think of pickles etc. and of course my p.b. has salt added.......Oh well, I will pay attention and just go by what seems to affect me. Have a good day Squirmingitch!!

FYI most preserved food will NOT contain iodized salt since it will cloud it (pickles, etc.). Pickling salt is pointedly non-iodized.

I went cold turkey in the beginning on nut butters, etc. since I could only find one that was low-salicylate and salt free. When I added back those "regular" salted foods I never had a problem. Except potato chips and corn chips, I noticed a small spot then.

My biggies were seafood and carageenan and eggs and dairy. I grew to hate egg whites with a passion (and still do, btw).

[lizk]

My biggies were seafood and carageenan and eggs and dairy. I grew to hate egg whites with a passion (and still do, btw).

[Charli61]

FYI most preserved food will NOT contain iodized salt since it will cloud it (pickles, etc.). Pickling salt is pointedly non-iodized.

I went cold turkey in the beginning on nut butters, etc. since I could only find one that was low-salicylate and salt free. When I added back those "regular" salted foods I never had a problem. Except potato chips and corn chips, I noticed a small spot then.

My biggies were seafood and carageenan and eggs and dairy. I grew to hate egg whites with a passion (and still do, btw).

Thanks Pricklypear1971! I had kind of surmised that if it were cheaper to use non iodized salt (which is my understanding) the largest percentage of prepared foods would likely use the cheaper version.... but I really had no clue about the pickles. Good to know!

Tis a slippery slope that I am navigating lately, but with the help of all you wonderful folks here at celiac.com I will manage just fine I'm sure! Thanks again!!

[squirmingitch]

See, you ;earn something new everyday! Thank you very much Prickly --- I didn't know that about pickling salt. YAY! I can add pickles back in & olives too. Does that mean corned beef is back on the list also? Please tell me it's true. Pleeeeeeeease.

Charli61, don't be fooled by the "iodized salt is more expensive than non iodized". I just got an email back recently:

• 
  Kentucky Legend ham

We use iodized salt for our hams.

Have a great day!

Laura L. Davis

Sales and Marketing Coordinator

502-896-3273 Office

502-314-0270 Cell

AND I contacted Nuts.com & they use iodized salt even in their gluten-free stuff. I have appealed to them to consider using non iodized salt explaining the problem celiacs with dh can have with iodine & Krysten said she would pass it along to the proper dept.

[Charli61]

See, you ;earn something new everyday! Thank you very much Prickly --- I didn't know that about pickling salt. YAY! I can add pickles back in & olives too. Does that mean corned beef is back on the list also? Please tell me it's true. Pleeeeeeeease.

Charli61, don't be fooled by the "iodized salt is more expensive than non iodized". I just got an email back recently:

• 
  Kentucky Legend ham

We use iodized salt for our hams.

Have a great day!

Laura L. Davis

Sales and Marketing Coordinator

502-896-3273 Office

502-314-0270 Cell

AND I contacted Sees candies & chocolates & they use iodized salt even in their gluten-free stuff. I have appealed to them to consider using non iodized salt explaining the problem celiacs with dh can have with iodine & Krysten said she would pass it along to the proper dept.

I am so glad you told me that about the iodized salt in things...My reasoning seemed sound to me But hey!! Yay for pickles! I just figured out the 'garlic and fine herb Boursin cheese' didn't do me any favours! Oh well, my daughter will get the remainder of it! It 'got' me twice, so it's definitely a no-no! I do know that dairy isn't too good, but I figured maybe occasionally... Hah, silly me. Anyway thanks again!

[squirmingitch]

I would like to apologize, I made a mistake in my last post & stated Sees candies & chocolates was who I contacted about the iodized salt. I have edited the post. I meant to type Nuts.com not Sees. It is Nuts.com whom I requested change their iodized salt to non iodized. I just wanted to clear that up. Sorry for typing the wrong company in.

So sorry Charli about the Boursin cheese --- I love that stuff too. When I first joined here someone told me the "hard" cheeses may be tolerated far better & have less iodine content. Unfortunately, according to my Googling, the hard cheeses consist mostly of the "stinky" cheeses. You know, the moldy ones. And I've never been able to tolerate those.