• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Help! New To Celiacs & Testing Rash?
0

5 posts in this topic

Recommended Posts

tothesky    0

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?

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


kareng    1,992

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.

Share this post


Link to post
Share on other sites
notme!    287

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. 

Share this post


Link to post
Share on other sites
beth01    40

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.

  • Upvote 1

Share this post


Link to post
Share on other sites
squirmingitch    495

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.

Share this post


Link to post
Share on other sites
Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      107,906
    • Total Posts
      938,594
  • Member Statistics

    • Total Members
      65,822
    • Most Online
      3,093

    Newest Member
    blueides
    Joined
  • Popular Now

  • Topics

  • Posts

    • Not sure what you mean by "celiac growth spurt." How was the celiac diagnosis arrived at?  Based only on symptoms? Genetic testing? Endoscopy? Are you making sure that your daughter is strictly following a gluten free diet?
    • To me it sounded like he thought frying corn chips would contaminate the oil .     I never eat there.  I know a few years ago, the one by me was pretty Celiac friendly.  Maybe you had to have grilled wings?  They would get a clean bowl to toss them for Celiacs.  I don't know because I wasn't interested.  Maybe it depends on the store?  I would imagine one in Portland or Seattle or Denver , might be more aware than one in Omaha?  But even that depends.....
    • I would not eat there either for many reasons listed already. But what is wrong with yeast? *quote from op, not kareng 
    • Hi,  I just wanted to add some insight to my question on the test results.  I am 58 experiencing stress fractors to the foot without any extra activity.  I have osteoporosis and the thought process of the doctors is that I have another cause besides age for the osteoporosis.  The foot is not healing after 11 weeks in a boot.  Ortho sent me to Endo.  Endo did blood test.  Hormones normal and received the below results on Celiac.  I have had osteoarthritis since 21, Was diagnosised at 29 as being allergic to wheat, symptom was I lost my voice after having my first child.  Had my second at 32 and magic I could eat wheat again and not lose my voice.  Last year I was tested autoimmune because of lung issues; MAC and bronchiaestasis.  IGA was high then but no further testing.  I do not have digestion issues except lactose intolerant.  I do have low values on vitamin D. I do not go back to Endo until 2 weeks from now.  My sister is fighting her own issues which is pointing to autoimmune but drs. have figured her out yet.  My mom as MS and her mom died of ALS, Dad's side had Lupus.  Any thoughts?
    • I am sorry to hear you are having these problems with airborne particle sensitivity. My initial symptoms were neurological (extreme fatigue and visual migraines) and dermatological.  I had "eczema" from the base of my skull to my bra-line that itched and burned terribly.   I do not have Celiac disease but I do have gluten intolerance.  I have remained strictly gluten free for 6.5 years now (except for occ'l "glutenizing" by someone trying hard to be nice and feed me something they believe is gluten-free).  The first year I was gluten free I continued to have this rash in a smaller area but it would flare in the hairline.  We found gluten free oats in a product we used and cutting out oats almost completely alleviated my skin reaction.  My doctor informed me that the protein in oats is similar to other grains containing gluten so I may be reacting to it even though it is not actually gluten.   I now use only gluten free hair products as I have long hair and I figure that even though it is external hair blows in my face and I push it away or I may touch my hair to push it out of the way when eating or socializing.  Everyone is different as far as items they tolerate but I have had good results with Griffin Remedy (available online at their website), Aura Cacia (although they do use Cetryl Alcohol which I used to try to avoid for other reasons), and Avalon Organics Cucumber gluten-free shampoo and conditioner.  You probably already use gluten-free facial care products and lip glosses as you sound knowledgeable about Celiac and gluten-free issues. I don't buy any of my gluten free products from a store where they are shelved with the regular baking products.  (I would be OK with washing an item if it were plastic packaged but many are in cardboard so I personally feel the risk of contamination goes up).  I am blessed to be married to a man who is open minded and glad to see me feeling better so there is nothing with gluten in our home (in food products).  My diet is similar to the person who stated, "Solid advice" above.  Finally, if I am going out with friends I take food along with me except for a very few establishments where I am sure that I am safe.  I also bring a bottle of water or iced tea, and even a napkin, as some people preparing food may be touching something with gluten and then handling glasses for beverages or setting tables without being fully aware (as was mentioned above pertaining to the gluten-free oats).  I also found with the gluten-free diet fad that I have to be vigilant in asking about preparation in unknown venues (i.e. We were on a ski vacation and I was excited to see gluten-free items on the menu BUT the preparation area was not segregated, nor was the cookware.  I was able to explain my needs and accommodations were made.  Hopefully, the owner were more educated regarding the needs of people with gluten sensitivities vs. dietary preference and made some changes in their practices.) I hope you find the piece to your puzzle that works for you!    
  • Upcoming Events