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Dh? What Do You Guys Think?


Jdorrferball

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Jdorrferball Rookie

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

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Open Original Shared Link


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squirmingitch Veteran

I just get a black screen. No photos.

 

Are you still eating gluten?

 

What other symptoms do you have?

Jdorrferball Rookie

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 Grand Master

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 Rookie

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 Rookie

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 Veteran

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.

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Simone52 Newbie

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 Rookie

 

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 :unsure:  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 Rookie

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 Veteran

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 Rookie

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 :P

Simone52 Newbie

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 :P

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 Veteran

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 :P

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
 
Jdorrferball Rookie

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 Rookie

 

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
 

 

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!

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    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
    • lmemsm
      Seems like when I find a gluten free product I like, the producer stops manufacturing it and then I have trouble finding a new gluten free source for it.  What's worse, I've been contacting companies to ask if their products are gluten free and they don't even bother to respond.  So, it's making it very hard to find safe replacements.  I was buying teff flour at nuts.com and they no longer carry it.  I noticed Naturevibe has teff and soy flour.  However, I can't get a response as to whether their flours are safe for someone with celiac.  Can't get a response from Aldi if their peas are safe for someone with celiac either.  I know Bob's Red Mill has teff flour but was hoping to get a large quantity.  I've been using up the 20 ounce Bob's Red Mill teff flour too quickly.  Does anyone know of a good source for teff or soy flour?  Any recommendations where to get gluten free beans, peas or lentils?  I found some packages of gluten free beans at Sprouts but not much variety.  I've also been looking for lentil elbow macaroni and it seems like no one is making that now that Tolerant was bought out.  Any suggestions for safe sources for these types of ingredients.  Thanks.
    • chrish42
      All I can say is this site is great!
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