Ah Ha Moment

[OregonOkie]

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.

[ravenwoodglass]

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]

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]

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]

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]

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]

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.

[OregonOkie]

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]

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.