Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Ah Ha Moment


OregonOkie

Recommended Posts

OregonOkie Newbie

I'm new to the forum - new at this. I have had horrible itching for about 10 years now on the inside of my thighs. I never had a rash until about a year ago when out of no where I had horrible rashes on my elbows and on the back of my neck that came and went. No water blisters, that I could tell. Just this incredible itchy rash. I went to my physician that prescribed steroid creme - it got better. This year the itching expanded to my abdomen and down my right leg. The rash was truly horrible. Raised and red - when I would itch - the top of the rash would come off and leave what I call craters on my legs. In groups - and painful. October and November the rash spread to my buttocks and back. I finally went to a dermatologist in agony - willing to do WHATEVER IT TOOK to get rid of the itching. Kept me up at night.

Derm looked at the rash for about 15 minutes and said - I think you have DH. Huh?? He told me about being possibly allergic to wheat/gluten. A light bulb went off for me. About 5 years ago I dieted - all protein, no carbs. No itching. I couldn't believe it. He did a biopsy - drew blood for the IgA test and anti-gliaden. All came back negative. Here's the kicker - quit eating gluten/wheat that night. Within 2 days the intense itching was gone. Within about 2 weeks the rash is healing. I ate a cookie over the holidays (1) and a new rash broke out on my right leg....stomach started itching again. I've since quit completely. Rash is resolving. Thought I had IBS but since I've quit eating wheat those symptoms have resolved. My sinus issues are nearly resolved. I tested positive for everything on the scratch test for mold, grasses, mites etc. They had to stop the test. I'm wondering now if that is all related.

Questions for you that are more informed:

My mom was recently diagnosed with primary biliary cirrohsis. She had no hx of hepatitis and never had a drink in her life. It's a terminal diagnosis. She previously was diagnosed with fibromyalgia and other assorted autoimmune disorders. She had horrible migraines.

My maternal grandmother suffered from migraines and sinus problems. She had gas almost everyday.

My daughter has migraines and balance (vertigo) issues. Her bowels are fine. She has horrible allergies and sinus issues.

My maternal uncle has an allergy to bananas and migraines.

Can celiac disease cause all of these issues? It seems to be a bit more than a coincidence. I'm very, very worried about my daughters dizzy spells.

Even tho' I've tested negative - I'm not going to eat wheat anymore. I think with the rash going away and the itching almost gone - this was the problem.

Can someone help confirm or not confirm this? Thank you.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
I'm new to the forum - new at this. I have had horrible itching for about 10 years now on the inside of my thighs. I never had a rash until about a year ago when out of no where I had horrible rashes on my elbows and on the back of my neck that came and went. No water blisters, that I could tell. Just this incredible itchy rash. I went to my physician that prescribed steroid creme - it got better. This year the itching expanded to my abdomen and down my right leg. The rash was truly horrible. Raised and red - when I would itch - the top of the rash would come off and leave what I call craters on my legs. In groups - and painful. October and November the rash spread to my buttocks and back. I finally went to a dermatologist in agony - willing to do WHATEVER IT TOOK to get rid of the itching. Kept me up at night.

Derm looked at the rash for about 15 minutes and said - I think you have DH. Huh?? He told me about being possibly allergic to wheat/gluten. A light bulb went off for me. About 5 years ago I dieted - all protein, no carbs. No itching. I couldn't believe it. He did a biopsy - drew blood for the IgA test and anti-gliaden. All came back negative. Here's the kicker - quit eating gluten/wheat that night. Within 2 days the intense itching was gone. Within about 2 weeks the rash is healing. I ate a cookie over the holidays (1) and a new rash broke out on my right leg....stomach started itching again. I've since quit completely. Rash is resolving. Thought I had IBS but since I've quit eating wheat those symptoms have resolved. My sinus issues are nearly resolved. I tested positive for everything on the scratch test for mold, grasses, mites etc. They had to stop the test. I'm wondering now if that is all related.

Questions for you that are more informed:

My mom was recently diagnosed with primary biliary cirrohsis. She had no hx of hepatitis and never had a drink in her life. It's a terminal diagnosis. She previously was diagnosed with fibromyalgia and other assorted autoimmune disorders. She had horrible migraines.

My maternal grandmother suffered from migraines and sinus problems. She had gas almost everyday.

My daughter has migraines and balance (vertigo) issues. Her bowels are fine. She has horrible allergies and sinus issues.

My maternal uncle has an allergy to bananas and migraines.

Can celiac disease cause all of these issues? It seems to be a bit more than a coincidence. I'm very, very worried about my daughters dizzy spells.

Even tho' I've tested negative - I'm not going to eat wheat anymore. I think with the rash going away and the itching almost gone - this was the problem.

Can someone help confirm or not confirm this? Thank you.

Yes celiac can cause all that and more. It is recommended by the National Institute of Health that all members of your family be tested. After testing I would get at least your mother and daughter on the diet if you can no matter what the results. The balance issues your daughter is having could be ataxia and I know from personal experience that at times once that become severe complete healing may not be possible.

The following link and excerpt is from the NIH

Open Original Shared Link

Adults are less likely to have digestive symptoms and may instead have one or more of the following:

unexplained iron-deficiency anemia

fatigue

bone or joint pain

arthritis

bone loss or osteoporosis

depression or anxiety

tingling numbness in the hands and feet

seizures

missed menstrual periods

infertility or recurrent miscarriage

canker sores inside the mouth

an itchy skin rash called dermatitis herpetiformis

People with celiac disease may have no symptoms but can still develop complications of the disease over time. Long-term complications include malnutrition

OregonOkie Newbie

Thank you so much - the link to nih was terrific and helpful. It seems as if the testing is fairly inconclusive. Troubling. I'll call and speak to my daughter and see if I can get her to agree to testing. She loves her bread - but may be convinced as the balance issue is very troubling to her.

Again - appreciate the feedback.

mushroom Proficient

Even if all the diagnostic testing of you and/or family members should come back negative, you can always go the genetic testing route to test for susceptibility for celiac disease.

linuxprincess Rookie

I've found that everyone reacts differently to a wheat allergy or Celiac's disease.

I always give the same advise: stop eating it and if you feel better, don't eat it again - even if the doctors tell you you're doing it for nothing. You'll find if you poke around on the forums here a bit, that most of us have given our doctors a crash course in Celiac's. My doctor refused to believe that milk was also causing my symptoms, but when I stopped eating diary, many problems went away.

Try an elimination diet for you and your daughter. You might even suggest it to the mum - symptoms improve drastically within a week or two and continue to improve for months.

My father suffered from Celiac's and his issues were ulcers, balance issues, Addinson's, no weight gain, gassiness, loose bowels and constant hunger. Mine were horrible rashes, constant hunger, bowel issues and some other things.

It manifests differently for everyone so keep trying things until you find something that works for YOU not what your test results say. Doctors often forget to treat the patient and only treat the numbers they see in front of them.

sugarsue Enthusiast

Hello! I have tested positive to wheat allergy but negative celiac panel. I had intense itching under my arm pits. If I scratched, huge welts would appear. I found out by accident that if I gave up wheat the itching would stop. I wonder, now with the knowledge of my daughter's gluten intolerance, if I have more than a wheat allergy but negative tests. I do know that it's worth staying away from gluten to stop the itch! It also causes depression for me as well. I am very glad you have found some relief.

I don't have any answers for you regarding your questions, but it sounds like you are on the right path!

ravenwoodglass Mentor
Thank you so much - the link to nih was terrific and helpful. It seems as if the testing is fairly inconclusive. Troubling. I'll call and speak to my daughter and see if I can get her to agree to testing. She loves her bread - but may be convinced as the balance issue is very troubling to her.

Again - appreciate the feedback.

I loved, read was addicted to, bread also. I don't regret giving it up now in the slightest. I hope she agrees to testing and a trial of the diet no matter what the results.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



OregonOkie Newbie
I loved, read was addicted to, bread also. I don't regret giving it up now in the slightest. I hope she agrees to testing and a trial of the diet no matter what the results.

Going to see about getting us both tested now - for a food allergy panel. I'm getting suspicious that there may be more going on. Need to be absolutely sure that we quit eating what we're allergic to.

I too have been amazed the complete lack of knowledge of the medical community regarding this disease and symptoms. I work in healthcare so imagine my horror. Thank goodness for the dermatologist who was on his game!!

So far, so good. My rash is almost healed. Made the colossal mistake of having a scotch and water Saturday night. My tummy has broken out in a rash and ITCHY. EEEECK.

Thanks all for your advice, stories and experience. It's appreciated.

ravenwoodglass Mentor
Going to see about getting us both tested now - for a food allergy panel. I'm getting suspicious that there may be more going on. Need to be absolutely sure that we quit eating what we're allergic to.

I too have been amazed the complete lack of knowledge of the medical community regarding this disease and symptoms. I work in healthcare so imagine my horror. Thank goodness for the dermatologist who was on his game!!

So far, so good. My rash is almost healed. Made the colossal mistake of having a scotch and water Saturday night. My tummy has broken out in a rash and ITCHY. EEEECK.

Thanks all for your advice, stories and experience. It's appreciated.

Having a food allergy panel is not a bad idea, however it will NOT detect celiac because celiac disease and DH are autoimmune conditions. Celiac testing also needs to be done while a person is still on gluten. So make sure that any family members don't go gluten free until they have done all the testing you want.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,012
    • Most Online (within 30 mins)
      7,748

    LilianAlex
    Newest Member
    LilianAlex
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • ShariW
      These look great!  I follow several people who frequently post gluten-free recipes online (plus they sell their cookbooks). "Gluten Free on a Shoestring" and "Erin's Meaningful Eats>"
    • Scott Adams
      Sounds great, we also have lots of recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/
    • ShariW
      When I had to go gluten-free, the rest of my family still ate gluten. They still eat regular bread products and crackers, but there are no other gluten-containing foods in the house. I bought a separate toaster that is only used for gluten-free products, and thoroughly cleaned all cookware, dishes and surfaces. We do have to be very careful with cross-contact, for instance when someone else is making a sandwich with wheat bread. Then I went through my cupboards and pantry, I set aside everything else with gluten and gave it away - flour and baking mixes, pasta, etc. So when I cook any recipe that calls for flour (perhaps for thickening) or bread crumbs like Panko, I only use gluten-free. My cupboard now holds gluten-free baking flour, tapioca flour, rice flour, almond flour, gluten-free oats, gluten-free grits, gluten-free cornmeal, and a few gluten-free baking mixes for occasional use. On the odd occasion when we have pasta, it is gluten-free - nobody notices the difference in the "new" lasagna. I have found several good recipes that are gluten-free and everyone loves them. A family favorite is the Tarta de Santiago, a naturally gluten-free treat made with almond flour.
    • Scott Adams
      This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Exactly, everyone with celiac disease technically has an "intolerance" to these: Wheat: The prolamin is called gliadin. Barley: The prolamin is called hordein. Rye: The prolamin is called secalin. Around 9% of celiacs also should avoid oats (but around the time of diagnosis this may be much higher--some will have temporary intolerance): Oats: The prolamin is called avenin. I had to avoid this for 1-2 years after my diagnosis until my gut healed: Corn: The prolamin is called zein. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful:    
×
×
  • Create New...