Dh? What Do You Guys Think?

[Jdorrferball]

Here are three photos of my rash. This is worse than what I usually get. This is the progression over a couple of days. The first pic is what it looked like when I woke up Saturday morning. The second pic is from Sunday afternoon and the last is from this morning. This particular area has been far more itchy than what I usually deal with. Usually I just have a few small bumps in clusters and random single ones that go away rather quickly. Just looking for opinions. My GI doc has ordered blood tests but I haven't had them done yet as I don't have insurance.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

[squirmingitch]

I just get a black screen. No photos.

 

Are you still eating gluten?

 

What other symptoms do you have?

[Jdorrferball]

I changed the settings on my flikr account. Could you try again? Yes I am still eating gluten. I had a perforated colon in February and was told I have crohns a disease. Kind of a long story but I've been suspicious for gluten sensitivity in myself and some of my children and then I started getting this odd rash a couple months ago. Ive always suffered with headaches and migraines for as long as i can remember. I have had chronic diarrhea for about four years. We went gluten free for a couple of weeks and my rash, which was very mild at the time, cleared up and i felt so much better in general. We went back to eating gluten to pursue testing and the rash came back. Not only that but a couple of my children vomited the next day, one has been suffering headaches and various ailments ever since etc etc. My almost 16 year old has an unexplained low ferritin level of 3, I have a toddler who has fallen off the growth chart...the list seems endless.

[kareng]

The pictures are fine. They worked for me the first time, too. Don't know much about DH. I have to look at the pictures new people post - just to make sure it isn't porn or an advertisement.

[Jdorrferball]

Okay...odd but when I try to view them through the links when I am on my phone, they show up fine.  If I'm on the computer, it appears to be a black screen but I think it's really just a huge version of the pic.  On the right hand side you can click where it says "close" and whalah...there is the pic!  Sorry about the confusion... I'm new to flickr!

[Jdorrferball]

I had a perforated colon in February and was told I have crohns disease. Kind of a long story but I've been suspicious for gluten sensitivity in myself and some of my children and then I started getting this odd rash a couple months ago. Ive always suffered with headaches and migraines for as long as i can remember. I have had chronic diarrhea for about four years. We went gluten free for a couple of weeks and my rash, which was very mild at the time, cleared up and i felt so much better in general. We went back to eating gluten to pursue testing and the rash came back. Not only that but a couple of my children vomited the next day, one has been suffering headaches and various ailments ever since etc etc. My almost 16 year old has an unexplained low ferritin level of 3, I have a toddler who has fallen off the growth chart...the list seems endless.  These pics are from Saturday, Sunday, and this morning.  Sunday it was the most itchy!  Just wondering if any of you who have DH think this could be DH?

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

[squirmingitch]

It could be dh. There are many skin conditions/rashes associated with celiac disease & it could be 1 of them. DH itches like a b%$@#! 24/7/365. It wakes you up at night with the itch or just plain keeps you up all night, not to say it doesn't itch during the day b/c it does --- like a mutha!

DH also tends to present bilaterally. If you have it on 1 elbow then it presents on the other 1 as well. I leg, the other leg & so forth.

However, from all else you wrote it sounds like you & the kids really, really need to be tested for celiac disease.

Make sure the doc does the full, current celiac panel for blood. Here it is:

 

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA 

 

The DGP test was added recently to the full panel.

 

 

Also can be termed this way:

 

Endomysial Antibody IgA

Tissue Transglutaminase IgA 

GLIADIN IgG

GLIADIN IgA

Total Serum IgA 

Deamidated Gliadin Peptide (DGP) IgA and IgG

 

AND you can get a biopsy of the rash but the derm darn well better know what they are doing or else you will come up negative falsely & that happens all the time b/c they don't get the biopsy right. It is to be taken from CLEAR skin ADJACENT to an ACTIVE lesion. And you still must be actively eating gluten even for the dh biopsy or it will be false negative. And if you have been on either oral or topical steroids within the last 2 or 3 months then the dh biopsy will show as negative.

[Simone52]

I had a perforated colon in February and was told I have crohns disease. Kind of a long story but I've been suspicious for gluten sensitivity in myself and some of my children and then I started getting this odd rash a couple months ago. Ive always suffered with headaches and migraines for as long as i can remember. I have had chronic diarrhea for about four years. We went gluten free for a couple of weeks and my rash, which was very mild at the time, cleared up and i felt so much better in general. We went back to eating gluten to pursue testing and the rash came back. Not only that but a couple of my children vomited the next day, one has been suffering headaches and various ailments ever since etc etc. My almost 16 year old has an unexplained low ferritin level of 3, I have a toddler who has fallen off the growth chart...the list seems endless.  These pics are from Saturday, Sunday, and this morning.  Sunday it was the most itchy!  Just wondering if any of you who have DH think this could be DH?

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

I am getting only black screens as well.  But from what you have said re you and your family, I'd bet the farm on you having celiac. No need to go through hospital if it is cost prohibitive for you.  Get 100% gluten free.  Most probably for forever.  Not difficult these days.  If you show improvement with all of your symptoms, you have your answer.  If you feel great after about 6 months and want to "challenge" yourself, that would seal the deal if or when you react.  But be forewarned; the challenge reaction can be worse than anything you ever experienced but will have you swearing off any gluten for forever.

 

Your descriptions sound pretty classic to me.  I have been gluten-free for about twenty years and am terrified of the stuff now.  But as I said, it is not that difficult to do nowadays.  And drink TONS of water!

 

I hope I can see the pictures eventually.

 

And BTW, you are on the best possible site in the universe for information and support. You will probably learn more than any doctor can tell you.  Best of luck to you.

 

Let me clarify what I said above.  A good doctor can and SHOULD test you for celiac.  I am only suggesting that a hospital stay isn't necessary if you can't afford it. I didn't mean to imply that you and your family shouldn't be tested in an appropriate way by a reputable physician.  

 

Feel better.

[Jdorrferball]

 

It could be dh. There are many skin conditions/rashes associated with celiac disease & it could be 1 of them. DH itches like a b%$@#! 24/7/365. It wakes you up at night with the itch or just plain keeps you up all night, not to say it doesn't itch during the day b/c it does --- like a mutha!

DH also tends to present bilaterally. If you have it on 1 elbow then it presents on the other 1 as well. I leg, the other leg & so forth.

However, from all else you wrote it sounds like you & the kids really, really need to be tested for celiac disease.

Make sure the doc does the full, current celiac panel for blood. Here it is:

 

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA 

 

The DGP test was added recently to the full panel.

 

 

Also can be termed this way:

 

Endomysial Antibody IgA

Tissue Transglutaminase IgA 

GLIADIN IgG

GLIADIN IgA

Total Serum IgA 

Deamidated Gliadin Peptide (DGP) IgA and IgG

 

AND you can get a biopsy of the rash but the derm darn well better know what they are doing or else you will come up negative falsely & that happens all the time b/c they don't get the biopsy right. It is to be taken from CLEAR skin ADJACENT to an ACTIVE lesion. And you still must be actively eating gluten even for the dh biopsy or it will be false negative. And if you have been on either oral or topical steroids within the last 2 or 3 months then the dh biopsy will show as negative.

 

Thanks for looking at the pics   I do actually the rash on both elbows, and have had it on both knees.  It is much milder than what is in the pics that I posted.  In fact, it has been mild this whole time and not all that itchy, until this new breakout that I posted.  My hubby was hollering at me at 3 a.m. to stop scratchin it   My GI doc has ordered some blood work.  Hoping to have the cash to get it done VERY soon...I have no health insurance.  I am also hoping to find a competent dermatologist because I figure the skin biopsy has got to be cheaper than an endoscopy.   I'm so ready to go back to being gluten free!  I had so much more energy when I was gluten-free and felt like a whole new person in the morning.  I also had normal stools for a couple days for the first time in years!  Thanks so much for your help!

[Jdorrferball]

I am getting only black screens as well.  But from what you have said re you and your family, I'd bet the farm on you having celiac. No need to go through hospital if it is cost prohibitive for you.  Get 100% gluten free.  Most probably for forever.  Not difficult these days.  If you show improvement with all of your symptoms, you have your answer.  If you feel great after about 6 months and want to "challenge" yourself, that would seal the deal if or when you react.  But be forewarned; the challenge reaction can be worse than anything you ever experienced but will have you swearing off any gluten for forever.

 

Your descriptions sound pretty classic to me.  I have been gluten-free for about twenty years and am terrified of the stuff now.  But as I said, it is not that difficult to do nowadays.  And drink TONS of water!

 

I hope I can see the pictures eventually.

 

And BTW, you are on the best possible site in the universe for information and support. You will probably learn more than any doctor can tell you.  Best of luck to you.

 

Let me clarify what I said above.  A good doctor can and SHOULD test you for celiac.  I am only suggesting that a hospital stay isn't necessary if you can't afford it. I didn't mean to imply that you and your family shouldn't be tested in an appropriate way by a reputable physician.  

 

Feel better.

If you click the link and the black screen appears, you should be able to click the X on the right hand side where it says "Close" and then the pic shows up.  Weird I know....   As I replied to squirmy above...the rash is bilateral...both elbows and has been on both knees though it is currently only on one and much more mild than what is in the pics.  The rash is definitely getting worse though with each new breakout!  My GI doc has ordered some blood work which I am hoping to have done very soon...no health insurance.  We have a large family (10 kids) so I do feel testing is pretty important in order to clarify but in the end, if a gluten free diet helps us then that is what we will do even if testing is negative.  I just have this feeling our testing will be a mess...seems that so many people have false negatives.  Thanks so much for your help!

[squirmingitch]

Simone, go to the second time she posts the same post with the links for the photos & try those links. I tried clicking on the close in the first post she did & STILL got a black screen.

 

To Jdorrferball, hon, you don't need anyone's permission to go gluten-free. & it seems like it might be better to save the money for testing the kids. The kids will need it for school & college so they can be exempt from mandatory food payments & so in grade & high school they are not made to eat gluten & have certain protections. The more you say, the more it's indicative of dh & even if that weren't the case, I think you have celiac disease. Testing is really screwy. And I have to tell you that if you have dh then only 40% of the time will you test positive on the celiac blood work. That's just the way it is with dh --- the antibodies are in the skin.

[Jdorrferball]

Simone, go to the second time she posts the same post with the links for the photos & try those links. I tried clicking on the close in the first post she did & STILL got a black screen.

 

To Jdorrferball, hon, you don't need anyone's permission to go gluten-free. & it seems like it might be better to save the money for testing the kids. The kids will need it for school & college so they can be exempt from mandatory food payments & so in grade & high school they are not made to eat gluten & have certain protections. The more you say, the more it's indicative of dh & even if that weren't the case, I think you have celiac disease. Testing is really screwy. And I have to tell you that if you have dh then only 40% of the time will you test positive on the celiac blood work. That's just the way it is with dh --- the antibodies are in the skin.

Right now more than ever I am so thankful we HOMESCHOOL!  I don't have to worry about what they might get at school   I have been considering just going gluten free and assuming that I likely have Celiac disease.  I of course would have everyone else in the house gluten free as well...hard enough to cook for 12 people without making separate meals!  Plus so many of them seemed to react to going back on gluten...  I also have a child (13) with autism and an almost 3 year old who is rather...quirky... so, with each passing day I am more convinced there is a gluten issue in our home and that it needs to go!  Thanks so much again for your help and encouragement.  My hubby doesn't seem to think I have celiac.  I told him to read up on it and then get back to me

[Simone52]

Right now more than ever I am so thankful we HOMESCHOOL!  I don't have to worry about what they might get at school   I have been considering just going gluten free and assuming that I likely have Celiac disease.  I of course would have everyone else in the house gluten free as well...hard enough to cook for 12 people without making separate meals!  Plus so many of them seemed to react to going back on gluten...  I also have a child (13) with autism and an almost 3 year old who is rather...quirky... so, with each passing day I am more convinced there is a gluten issue in our home and that it needs to go!  Thanks so much again for your help and encouragement.  My hubby doesn't seem to think I have celiac.  I told him to read up on it and then get back to me

I'm going to agree with Squirmingitch.  I would say your entire family is, at the very least, gluten-intolerant.  Celiac is not all that uncommon.  The general thought way back when I was a child was that it was too rare to even be considered.  There was an Italian doctor in the 70's ( I can't remember his name offhand)who had a wife and child with Celiac and wondered why it was so rare in the U.S.  He thought that if he could find out, he could help the Celiac patients he had in Europe. He was given a grant to come here and research to find that reason.  What he discovered was that it wasn't rare at all and that, in fact, it was more common than the IBS and lactose intolerance that all of us had been misdiagnosed with for so many years.  

 

Does your husband have a medical degree?  He certainly does need to read up on it.  And this site would be the perfect place to start.

 

With ten kids (God bless you!) and all of the symptoms you are describing within your family, it couldn't hurt to get rid of all the evil gluten and see if you don't all improve.  As I said before, it is much easier these days.  Does not need to be expensive and in fact, is just pain healthier no matter what the case.  There are some great rice pastas out there as well as bakery goods for the kids.  

 

Think of this as an adventure.  Truly, it has become almost trendy so going gluten-free is not as daunting as you might think.

 

I followed Squirmy's advice and opened the second post and the pictures opened.  You sure have SOMETHING!!  Really, try the gluten-free diet and keep in touch.  There's a lot of guidance on this site as well as in the general public.

 

I'm curious to know how your colon perforated.  That sounds awful.  

 

Stay in touch.

[squirmingitch]

Right now more than ever I am so thankful we HOMESCHOOL!  I don't have to worry about what they might get at school   I have been considering just going gluten free and assuming that I likely have Celiac disease.  I of course would have everyone else in the house gluten free as well...hard enough to cook for 12 people without making separate meals!  Plus so many of them seemed to react to going back on gluten...  I also have a child (13) with autism and an almost 3 year old who is rather...quirky... so, with each passing day I am more convinced there is a gluten issue in our home and that it needs to go!  Thanks so much again for your help and encouragement.  My hubby doesn't seem to think I have celiac.  I told him to read up on it and then get back to me

IMHO since you're homeschooling then if I were you, knowing what I now know (having celiac disease) I would take the entire family gluten-free straight away. They say that people with autism do better on a gluten-free diet anyway so there's yet another reason. I guess your hubs would be the only one who could be a gluten eater & that's fine --- he can eat gluten when he's not at home --- he just has to brush his teeth very well before you guys kiss (yes, that can gluten you). With 12 ppl in the household there is no way you could manage a shared household with gluten eaters & not continually get glutened.

Ask your hubs how many nights he wants to be woken (or stay awake) with your scratching. Nah, I don't really believe your hubs will be so stubborn on the subject. Men just seem to have trouble dealing with, adapting to change & they fight it or deny it. It happens over & over & over on this board with women reporting their hubs balking but in the end product I haven't read of a 1 who still persists in being stubborn. Your hubs obviously loves his kids (as do you) & will do what's best for all of you. Just wait till about 3 or 4 months down the line when he sees what a difference it has made in you & the kids you think have gluten problems. 

Get yourself on over to the recipe/cooking forum & find some goodies to make.

BTW, if your rash persists or comes back (& it can even gluten-free cause that's what dh does) then try going low iodine & see what happens. Basically, for low iodine, no dairy of any kind, no egg yolks, no seafood, no iodized salt, no kidney, pinto, navy or lima beans. See thyca.org for low iodine diet. Of course that is not a diet for celaics so you have to cut the gluten foods out of their list.

 

If you have 10 kids then you are one VERY strong woman! You will be fine. And if at any time you want to stamp your feet, scream, whine, pitch a hissy fit, have a pity party --- we're here to listen & sympathize. We've all been there!

 

This thread will help you a ton!:

Newbie 101 for celiacs

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[Jdorrferball]

I'm going to agree with Squirmingitch.  I would say your entire family is, at the very least, gluten-intolerant.  Celiac is not all that uncommon.  The general thought way back when I was a child was that it was too rare to even be considered.  There was an Italian doctor in the 70's ( I can't remember his name offhand)who had a wife and child with Celiac and wondered why it was so rare in the U.S.  He thought that if he could find out, he could help the Celiac patients he had in Europe. He was given a grant to come here and research to find that reason.  What he discovered was that it wasn't rare at all and that, in fact, it was more common than the IBS and lactose intolerance that all of us had been misdiagnosed with for so many years.  

 

Does your husband have a medical degree?  He certainly does need to read up on it.  And this site would be the perfect place to start.

 

With ten kids (God bless you!) and all of the symptoms you are describing within your family, it couldn't hurt to get rid of all the evil gluten and see if you don't all improve.  As I said before, it is much easier these days.  Does not need to be expensive and in fact, is just pain healthier no matter what the case.  There are some great rice pastas out there as well as bakery goods for the kids.  

 

Think of this as an adventure.  Truly, it has become almost trendy so going gluten-free is not as daunting as you might think.

 

I followed Squirmy's advice and opened the second post and the pictures opened.  You sure have SOMETHING!!  Really, try the gluten-free diet and keep in touch.  There's a lot of guidance on this site as well as in the general public.

 

I'm curious to know how your colon perforated.  That sounds awful.  

 

Stay in touch.

Oh boy...the perforated colon.  What a crazy story.  In January 2009 after the birth of my 7th child I started having bowel issues.  Lots of CRAZY noises like I had never heard and very loose stools.  Being the stubborn woman that I am, I completely ignored my problems despite urging from my hubby and others that I really needed to see a doctor.  Fast forward to January 2013 and I am due March 25 with my 10th child.  Mid January I started having some odd burning pain around the top of my uterus.  The pain got worse over a couple of weeks.  I had mentioned it to my OB/GYN and got the usual "well, the older you get and the more babies you have...the more aches and pains you get" blah blah blah.  I knew it wasn't that.  I had a couple of episodes that landed me in the ER where they kept insisting on sending me to labor and delivery even though I INSISTED that I knew what labor felt like and THIS WASN'T LABOR.    I had an episode of pain so severe that I could.not.move.  Then I threw up.  That was what sent me to the ER the second time but by the time I got there the pain was actually better.  They sent me to labor and delivery and I went home without many answers.  My OB ordered a gallbladder ultrasound which did show some stones and sludge so I tried to ignore the pain I was having.  What was weird about the pain is that after the extremely painful attacks, I had this remaining soreness that wouldn't go away.  My friend who has gallbladder issues said she had never experienced that with gallbladder attacks.  I had another attack to severe that my hubby called my OB and he said to go to the ER and tell them HE SAID not to send me to labor and delivery!!  My pulse was 139.  By the time I got in a room and the doc came in, I also had a fever.  They ordered all sorts of blood work and sent me for an ultrasound.  Turns out my white count was up also.  The ultrasound showed some fluid low in my abdomen but because of my very large uterus they couldn't tell where it was coming from.  They sent me for CT and still couldn't really tell but also noted that I had a "lesion" or something of some sort on my colon.  Surgeon came, my OB came in...they talked and said they thought it was my appendix.  They were going to operate and baby was going to be left in utero.  The whole time I had been contracting a little, but I wasn't dilating.  I woke up and was wheeled to labor and delivery to recover because they wanted to monitor the baby.  They had given me a couple shots to try to stop some contractions when I woke up and was in recovery.  That part is a little hazy being that I had just come out from under anesthesia.  When I was a little more coherent and in my room my hubs told me that it wasn't my appendix...the surgeon felt I had Crohn's disease, that my colon had perforated and I had severe infectious nastiness floating free in my abdomen..peritonitis, YAY!  They removed about a foot of my intestines.  The surgeon left a couple areas of the incision open because of the infection which was not only strange, it was creepy lol.  They kept trying to monitor the baby and I kept saying I was feeling pain down low in my back.  They checked my cervix and I was six centimeters.  My OB informed me she was going to break my water and I asked her if she was crazy?!  Even the nurse said..." But she's going to have a c-section, right?"  Doc said nope.  So, I had to deliver my baby (early), naturally, with an open incision, with a drain in my abdomen and a tube in my nose....and he was born face up!  He spent a couple weeks in the NICU but was healthy and big for a 32 weeker....5 pounds 12 ounces!  He is a precious gift and weighs 20 pounds now!  So, that's the story.  Haven't really had any further treatment for my Crohn's.  It has been my desire to try to treat it with a more natural approach rather than meds.  In my search of the internet for help I found this board and started reading up on Celiac. Not long after that I got the rash...felt like maybe God was trying to tell me something   Who knows...maybe I have both?

 

Thank you so much for all your encouragement and help.  It's nice to have a group of people who get where you're coming from!

[Jdorrferball]

 

IMHO since you're homeschooling then if I were you, knowing what I now know (having celiac disease) I would take the entire family gluten-free straight away. They say that people with autism do better on a gluten-free diet anyway so there's yet another reason. I guess your hubs would be the only one who could be a gluten eater & that's fine --- he can eat gluten when he's not at home --- he just has to brush his teeth very well before you guys kiss (yes, that can gluten you). With 12 ppl in the household there is no way you could manage a shared household with gluten eaters & not continually get glutened.

Ask your hubs how many nights he wants to be woken (or stay awake) with your scratching. Nah, I don't really believe your hubs will be so stubborn on the subject. Men just seem to have trouble dealing with, adapting to change & they fight it or deny it. It happens over & over & over on this board with women reporting their hubs balking but in the end product I haven't read of a 1 who still persists in being stubborn. Your hubs obviously loves his kids (as do you) & will do what's best for all of you. Just wait till about 3 or 4 months down the line when he sees what a difference it has made in you & the kids you think have gluten problems. 

Get yourself on over to the recipe/cooking forum & find some goodies to make.

BTW, if your rash persists or comes back (& it can even gluten-free cause that's what dh does) then try going low iodine & see what happens. Basically, for low iodine, no dairy of any kind, no egg yolks, no seafood, no iodized salt, no kidney, pinto, navy or lima beans. See thyca.org for low iodine diet. Of course that is not a diet for celaics so you have to cut the gluten foods out of their list.

 

If you have 10 kids then you are one VERY strong woman! You will be fine. And if at any time you want to stamp your feet, scream, whine, pitch a hissy fit, have a pity party --- we're here to listen & sympathize. We've all been there!

 

This thread will help you a ton!:

Newbie 101 for celiacs

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Ya know, I may very well need to come here and pitch a hissy fit lol.  During our short gluten free trial, all I wanted was FAST FOOD of the gluteny variety   I craved it terribly...I really did.  I think I may very well just forget the testing and go gluten free.  I don't know how much longer I can stand waiting and I certainly don't want to do any further damage to myself eating gluten until money starts falling from the sky for testing!  Thank you for your kind support.  I've been reading on this board for a little while now and you guys are so amazing.  There is SO MUCH information and support here.  I don't know what I would do without this board!  I plan to stick around...both to learn and to share our experience as we go forward.  Thanks so much again!