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Help! New To Celiacs & Testing Rash?
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Hi there, I am posting on behalf of my husband.  I have some questions and need some help from you guys, please & Thank you!! I want to be detailed, but I also don't want to go on and on and on.

 

 

Husband was basically born with Ulcerative Colitis, when he was in his late 20's they decided to remove his colon and give him an intestinal pouch (weird, right? called a J-Pouch).

 

He had a endoscope done a couple years after the surgery and they found that his Villi were flat. They told him to eat Gluten-Free for 3 months to see if his villi would rise again, and if they did rise, the doctor said that would mean that Gluten caused the flatness, therefore my husband would have Celiac's...

 

He ate gluten free (he was completely miserable) and he went back for the check up and they found that his villi were still flat. Because of this, they said he had Celiacs.

 

My husband, being stubborn, decided that he wasn't going to eat gluten-free anymore. Just being stubborn, he told himself that this Celiac's thing isn't real and doesn't exist, though, I think he was just joking...

 

Anyways, my husband never had Any stomach issues or any problems what-so-ever to make him think he had Celiacs, besides the flat villi.

 

Do to having an internal pouch (basically, his small intestine is now his colon....) he does go to the bathroom a lot and it's usually loose stools (TMI?) but all of this is expected from his J-Pouch, he never had stomach cramping or any other Celiac's symptoms... So he kept eating gluten, and we began to forget he was even "diagnosed" as having Celiac's.

 

Okay - fast forward like 8 years -

 

It's now June 2014, and in february 2014 my husband pointed out that he has a rash on his buttocks that's extremely itchy.  We thought, well, that's gross, but let's see if it goes away. Then a couple days later, he has bumps and a rash across his eye lids. We thought, well maybe he caught something weird, so we decided to go to the doctor. 

 

The skin doctor tells him that he has a fungal infection on his rear end, and maybe a bacterial infection in his eye, and takes  a skin culture. That comes back negative for bacteria. So, my husband takes some medicated lotions and pills and we wait it out. Though, we are never satisfied with thinking that it's a fungal rash. We go back for check ups and now the doctor says it's Eczema and gives us more medication. 

 

Weeks pass, and the rash is changing and spreading and finally, it almost 100% clears up.

 

I start googling pictures and I come across DH (the gluten rash) and we think it looks a like! Then we are reminded that my husband was once thought to have Celiacs! Maybe we found out what this is after all!

 

We have a final check up with the doctor and my husband asks him if this rash could be related to Celiacs, and the dermatologist laughs and says no, it's not. It's Ezcema! See! the medicine I gave you made you better therefore if it was DH, it wouldn't have cleared up.

 

We don't know what to believe. So at the beginning of April, when we thought the rash was all gone, we see it on his eyes again, and then his neck!, and his buttocks again, the back of his knees, his ear, his neck, his elbows, EVERYWHERE. It even spread to his cheeks and his scalp. My poor baby.

 

I basically made him start to eat gluten-free because we couldn't afford more doctor appointments. He's been gluten-free for about 3-4 weeks now and the rash is still itchy and still not going away!

 

We scheduled another appointment with a different Derm hoping they'll test his for DH.

 

my question is... Should he start eating Gluten again before this Dr appointment next week? How soon does he need to eat it again?

 

Also - does having flat villi be a symptom for something other than Celiac's? Could he be misdiagnosed for Celiacs if we find out this rash isn't gluten related?

 

His attitude has been so deflated over these past few months, and I just want him to get better. and he wants to eat Gluten so badly. I'm just tired of these doctor visits when they aren't listening to our experiences with his stomach and skin problems.

 

Any help?advice? anyone go through this?

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Not much I can tell you that you want to hear. Perhaps your husband could read some info here

http://www.cureceliacdisease.org

Also, if he has ulcerative colitis so bad he had his colon removed, isn't he supposed to be on a special diet anyway? Don't they usually recommend low gluten as part of that diet? I think you should be talking to the GI doctor.

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if he was diagnosed with celiac disease, why is he eating gluten again?  that is hard to understand.  i mean, after he already got his guts rearranged, wouldn't you want to comply with the medical advice regarding DIET.  not to mention, dh is only one lovely side effect of a celiac eating gluten.  there are, like, 300 possible symptoms...... 

 

this is not a frou frou disease.  getting your intestines destroyed by gluten is serious stuff.  maybe he should re-think his game plan?  you don't just skip the gluten and you feel better/till the rash goes away so you can eat gluten again - it's for life.  it's also systemic and auto-immune, so it affects your whole body (nutrient deficiencies, food malabsorbtion, blah blah) and it can be triggered by a tiny amount.  your villi can heal, but as soon as you eat gluten again - BOOM - it's back on the attack no matter how long you've been gluten free.

 

my dh went away in a few weeks but i still had flare ups from time to time.  it's pretty much gone, now.  i get cross contaminated every now and again, but the rash hasn't returned. 

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Take the advise of the physician EIGHT years ago and go 100% gluten free.  Read the newbie thread, learn about cross contamination.  If the rash isn't going away or getting better, it might mean he isn't 100% gluten free.  If he didn't take the advise of a physician eight years ago, what makes you think he isn't being "stubborn" because his wife is making him go gluten free now? Your husband wasn't " once thought to have celiac", he was diagnosed with it - told by a physician he had celiac. All according to your words.

 

I can't imagine what my life would be like now if I had been diagnosed eight years ago...... that's right, I'd be healthy.

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Take the advise of the physician EIGHT years ago and go 100% gluten free.  Read the newbie thread, learn about cross contamination.  If the rash isn't going away or getting better, it might mean he isn't 100% gluten free.  If he didn't take the advise of a physician eight years ago, what makes you think he isn't being "stubborn" because his wife is making him go gluten free now? Your husband wasn't " once thought to have celiac", he was diagnosed with it - told by a physician he had celiac. All according to your words.

 

I can't imagine what my life would be like now if I had been diagnosed eight years ago...... that's right, I'd be healthy.

 

Amen to that Beth!!!!

 

And to tothesky,

He was dx'd with celiac, he does not need to be dx'd with dh. Treatment is NO GLUTEN! Waste your money for a dh biopsy b/c he would have to eat gluten for 2 months or else you'll get a false negative. HE WAS DX'D WITH CELIAC. How many times does he need to be hit over the head????? A dx of dh is pointless now. And what price does he pay for not listening 8 years ago? DH! DH will surely make you wake up & smell the celiac! He was miserable eating gluten free for 3 months????? Eating gluten-free is NOTHING like the misery of dh. Yeh, NOW he's willing to go gluten-free. Gee, dh will do that to you.

You complain that the docs won't listen to his previous experiences with his stomach problems. Well, your husband wouldn't listen to the doc EIGHT years ago. Hmmmmmm.......

And BTW, dh can take years, yes, years of strict gluten-free eating to go away. That's what 8 yrs. of eating gluten when he wasn't supposed to may have netted him. And that doesn't even touch on all the other effects gluten had on every single cell in his body.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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