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

Uncontrollable Itching


bigapplekathleen

Recommended Posts

bigapplekathleen Contributor

Hi everyone,

I have been gluten-free now since Sept 1st of 2003. I have only had a couple epsidoes of accidental gluten ingestion, and none of them have been recent. However, for the past couple weeks, I have had INTENSE itching all over my body - especially my back, buttocks, scalp, neck, chin, neck. I have never experienced anything like this in my life. It actually keeps me awake at night & wakes me from a deep sleep. I also have red spots all over my body. The spots sort of look like acne, but I know they are not acne. I have some acne or spots on my face and I have white sores in my mouth (inside of my cheek in 2 spots). I also have itchy patches and red spots on my scalp. I have several very prominent red bumps on my neck. They actually look like HIVES.

I feel like this could be related to gluten, but not sure if it's something I am eating or something i am putting on my skin. I have not been diagnosed with DH, but suspect that i may actually have it. My case of celiac disease was quite severe with multiple health problems for many years before diagnosis. I am waiting to see Dr Green at the Celiac Center in NY City, but I can't get in there until April unless someone cancels an appt before then. I have seen a nutritionist there, though, who has been EXTREMELY helpful.

My question is this: Does anyone haave experience with this after going gluten-free? Could it be environmental (soap, shampoo, hair dye, laundry detergent, dry cleaning chemicals, etc)? I changed my hair color on Dec. 24 at a salon and had never been to that particular salon before. It didn't occur to me to think about the hair dye. Are there laundry detergents that are better than others for people with DH or celiac disease? I think I want to err on the side of caution now and go completely gluten-free in everything that touches my body...just until i can get this itching and redness to subside. I also recently bought a new brand of laundry detergent, not even thinking that would have an effect on my body. I just cannot seem to figure out what is causing this !

Help !!!!!!

Kathleen


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



Celiac.com Sponsor (A8-M):



JsBaby-G Newbie

Kathleen,

I sure sounds like DH to me. You know something, get an appointment with a dermatalogist before your appt with the dr in NYC. You can't go until April like this. However until then, what laundry detergent do you use? I'm from Canada and I use Sunlight, it's very mild. Watch the shampoo and conditioner you used as you have some bumps in your scalp, go to a health food store and get a mild all natural one. I would skip makeup if you wear it. I would also look at a health food store or drug store for a lotion that's very mild with no scent. Ask the pharmacist for something that treats eczema or psoriasis. As for the sores in your mouth, I get them when I use a toothpaste that have gluten in it. Use Tom's of Maine toothpaste. Since I don't have DH but have had some skin problems read about DH on this site. They provide alot of info. Lastly, get some Epsom salt, put them in a warm bath and try to relax. Oh yeah I recommend not dying your hair, as you could have some open sores and could be infected by the dye.

Hope you feel better.

bigapplekathleen Contributor

Hi Crystal,

Thanks for your reply. You know, after posting my comments last night, i went to a couple of celiac websites and looked at various pictures of DH. Some of them look a lot like what I have right now. I have been treated for excema in the past and my eldest sister has SEVERE psoriasis (had chemotherapy twice to treat it - experimental - and was hospitalized a couple times).

I use epsom salt baths a lot. It was the only thing that helped my excema.

Laundry detergent - I bought TIDE FREE last week when we ran out of ALL FREE AND CLEAR. That's when the itching started. So I switched immediately to an organic brand.

Toothpaste - I use colgate or crest. Both are supposedly gluten-free in the US.

Shampoo - I tend to use head and shoulders, because it helps with the itching. however, since I had my hair colored, I have been using L'Oreal Color Vive shampoo for color-treated hair. I have not seen any ingredients on the label that look 'suspect'

All my skin makeup is gluten-free.

My hand lotion is gluten-free.

The places I am getting the red spots are places I don't use makeup or lotion, except for the small spots on my face.

I think you're right about the dermatologist, though. I think I should try to get an appt soon. It's been a year since I have seen my dermatologist. The strange thing is that none of my dermatologists have ever said anything about the possibility of DH, but then again, none of my doctors said anything about the possiblity of celiac disease until 6 months ago!

JsBaby-G Newbie

Kathleen,

It seems like your doing everything right. I've been to the dermatologist about this discoloration on my back, it's not itchy or anything. He took a biopsy of it and it said nothing. He is totally baffled, he even invitited me to go to convention of dermatologists so his collegues could take a look. I said "no thanks" I'm tired of being a specimen. I hope you find what's ailing you.

Let me know

:D

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,186
    • Most Online (within 30 mins)
      7,748

    Kris46
    Newest Member
    Kris46
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...