Jump to content
  • 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

Itchy Skin?


suztodd

Recommended Posts

suztodd Newbie

Hi, My daughter is 5 and just got diagnosised 12 weeks ago. We've seen a dramatic change in her life from being a kid with chronic and awful constipation to a child who is now healing and feeling well.

With her finally starting to feel better I now willing to try to address her constant complaints about her skin.

She says she itches all over. She has some bumps on the back of her arms and some on her belly that always seem to be there. They got a little better and her skin seemed smoother the first couple of weeks on the gluten free diet.

The peditrician has said it's dry skin but I'm not sure since she is so adamant about it bothering her. I've tried heavy duty moisturizer with seeing no improvement over the years.

We've had her allergy tested and nothing came up. The only thing that did show was crazy IGG levels (50) the second time she got tested for Celiac. The first time she was a weak positive and the doctor dismissed it since she was a constipated kid. Wrong.

So, I'm wondering who do I ask about this. I put a hydrocortonsone cream on it and it she can settle down to sleep especially at night.

Do I ask the GI if it's related to Celiac? Go to a dermatologist, go back to the peditrician. It took a lot of doctor visits to get her diagnosised and I don't want to be missing something here.

Thanks for the input.

Suzanne

Elizabeth's mom. Finally off heavy duty laxatives after 5 years


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



Celiac.com Sponsor (A8-M):



Mother of Jibril Enthusiast

Hi Suzanne,

I would take your daughter to a dermatologist... my first thought is "chronic urticaria (hives)." It's a pretty common condition and it could explain the constant itching. This website is really helpful:

www.urticaria.thunderworksinc.com/

If it is CU there are several things you can try... antihistamines, a cream that you can mix yourself using nasalcrom (much easier on the skin that hydrocortisone), a low-histamine diet... but if it is CU and those treatments don't work it's definitely worth it to be in touch with a good dermatologist. There are quite a few prescription medications to try.

Good luck! Great news about the constipation :)

shayesmom Rookie
She says she itches all over. She has some bumps on the back of her arms and some on her belly that always seem to be there. They got a little better and her skin seemed smoother the first couple of weeks on the gluten free diet.

The peditrician has said it's dry skin but I'm not sure since she is so adamant about it bothering her. I've tried heavy duty moisturizer with seeing no improvement over the years.

First off, congratulations on your daughter feeling better. The diet can be tough at times...but the fringe benefits of feeling well are more than worth it!

I agree with a pp about seeing a dermatologist to find out what kind of rash your dd has. I also would suggest that you take the doctor's opinion on other allergies with a grain of salt. If the rash got better off gluten, but is still there.....you may have another intolerance (or allergy) at work. The tests are never 100% accurate. Only dietary trial is. My dd never tested positive for soy allergy and yet she reacts to it more than her actual egg or milk allergy. Gluten never came up positive on any tests and yet the slightest amount sets off a 12 hour long acute reaction with a couple days of residual effects.

We've also discovered that certain laundry detergents, soaps, sunscreens (which are supposed to be "safe") will cause skin reactions that resemble what you are describing. I can't begin to describe how miserable it can be to be allergic to a laundry detergent/fabric softener and to sleep in a bed with sheets laundered in it. We experienced that at my sil's house. The next time we visit, I'll be bringing my own sheets and pillows! :o

The point being, there are a lot of factors to rule out. Keep looking for the underlying cause and don't resign yourself to this being a "fact of life". It may not be.

Fiddle-Faddle Community Regular

My son's chronic severe eczema--which did NOT respond to the cortisone creams, even when my fingers went numb--disappeared after a several weeks on a 100% gluten-free diet.

All the doctors agreed (before this) that it had nothing to do with anything he ate. Each one wanted to give him stronger and stronger cortisone creams. Then they wanted him on some kind of allergy med.

They were wrong. And I have lost faith in dermatologists in general--but hopefully, more and more of them will become aware of the connection between skin and gluten.

Interestingly, my son's eczema began while he was consuming only breast milk. My going on a gluten-free, casein-free diet did nothing for his eczema. According to the dermatologist, his eczema was a reaction to his 4-month shots, though she couldn't narrow it down to which one (he'd received 3 or 4).

So we never expected his eczema to clear up from diet--but repeat challenges confirmed the gluten reaction.

Something else for you to look up might be dermatitis herpetiformis.

betsy7 Rookie

Fiddle-Faddle - how many weeks did it take for your son's skin to start to show signs of improvement?

My husband and son both have celiac disease. Now, my 2 1/2 year old daughter has persistent eczema (4 months now, bleeding, scratching, etc..), but no apparent GI or growth issues, like my son had. We had her tested for Celiac recently and probably have a week or two to wait for the results. I'm going to start her on a gluten-free diet this week to see what happens. She was allergy tested (no food allergies showed up), has prescription creams from a dermatologist, etc.. But, the eczema seems to flare up so quickly, that I just can't stop myself from thinking that it must be diet related (despite doctors thinking it can't be if allergies didn't show up in testing).

The eczema also turns red sometimes without reason -- all the patches will be red -- but it's not after a bath or sweating, but random times, which makes me think it's diet related. Has anyone else experienced that?

Thanks for your advice!

Betsy

Fiddle-Faddle Community Regular

Betsy, it took about a week to be sure that we were seeing consistent results and not the "waxing and waning" we were seeing prior to going gluten-free. In retrospect, that waxing and waning could have been from diet--we had always eaten a lot of rice anyway.

My son had no growth issues--only rash and tummy aches/diarrhea. His eczema DID turn bright red, often. It seemed to be when it was hot, or when he'd been scratching it--but not always. Sometimes I even wondered if there was some kind of rebound effect from the cortisone creams, where it would seem to get better--but then get twice as bad.

If the doctors think it can't be food-related if it didn't show up in allergy testing, then they are idiots. Celiac disease (as you probably know, but they don't seem to) is not an allergy, and will not show up in allergy testing.

I think the gluten-free diet is a very good idea, since you've already had celiac testing done.

There are a bunch of easy-to-miss sources of gluten, like barley malt (in almost all mainstream cereals, except the non-wheat Chex line, Honey Kix, Trix, Cocoa Pebbles, and Fruity Pebbles), bread crumbs in tuna salad, soy sauce in rotisserie chicken, etc. READ LABELS--many cereals have recently reformulated to be gluten-free, and the old boxes are still out there.)

If you feel overwhelmed with label-reading, please post! Many of us have been through this with ourselves and our kids, and would be glad to post what worked for us, answer questions, etc.

betsy7 Rookie

Thanks, Fiddle-Faddle! I completely agree with you about allergies not being the only food-related cause of issues like Eczema. Yes, my allergist thought that Celiac wouldn't cause it, but I know it's worth a try. Appreciate your offer of assistance re: foods. My son and husband were diagnosed about 3 years ago... so I'm pretty up-to-date on things. My daughter is gluten free at home... eats gluten snacks at daycare and gluten when we go out to eat. So, it's not a big switch for her.

LOVE the Chex line! Have even written them thank you letters... General Mills / Betty Crocker is coming out with gluten-free cake mix, brownie mix and cookie mix this summer:

Open Original Shared Link

Sure they'll be advertising on Celiac.com...

Thanks so much for your advice!


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



Celiac.com Sponsor (A8-M):



suztodd Newbie

Thanks everyone for some of the suggestions. We've been trying the cream that one of the parents suggested. It was easy to mix up.

Results have been less itching complaints but the skin is still bumpy and rough to the touch.

My guess is that it might take a while to see improvements on the worse areas.

Just a heads up for other parents desparate to help there newly diagnosised kids. I started giving my daughter vitamins to try to address her fatigue and my concern about poor absorption of calcium. The resuts were some digestive issues. My GI finally offered to do some blood work this looking at all her vitamin levels so now we will have a sense of which ones she really needs.

It was seeing her so uncomfortable again. A good clean out using lots of miralax and ennamas did the trick. Just a heads up not to make the same mistake I made.

Suzanne

  • 5 months later...
Ecezma or Celiac Mom? Newbie

My 4 year old daughter's story is similar to yours. Although we have not had much success after 3 months trying a gluten free diet. I say trying because it has been a struggle to be 100% gluten free for us. I have many sabbateurs in my life that just don't 1) understand why I am gluten freeing my daughter 2) don't want to learn about gluten free because it's too difficult and complicates their lives.

I'm curious to hear how your now likely 3 year old daughter is? Please share your experience with me....

Thanks!

Anne

Fiddle-Faddle - how many weeks did it take for your son's skin to start to show signs of improvement?

My husband and son both have celiac disease. Now, my 2 1/2 year old daughter has persistent eczema (4 months now, bleeding, scratching, etc..), but no apparent GI or growth issues, like my son had. We had her tested for Celiac recently and probably have a week or two to wait for the results. I'm going to start her on a gluten-free diet this week to see what happens. She was allergy tested (no food allergies showed up), has prescription creams from a dermatologist, etc.. But, the eczema seems to flare up so quickly, that I just can't stop myself from thinking that it must be diet related (despite doctors thinking it can't be if allergies didn't show up in testing).

The eczema also turns red sometimes without reason -- all the patches will be red -- but it's not after a bath or sweating, but random times, which makes me think it's diet related. Has anyone else experienced that?

Thanks for your advice!

Betsy

Ecezma or Celiac Mom? Newbie

Hi - I am curious to hear how your daughter is. My 4 year old has very similar symptoms. Both she and I have not slept in 4 years (ok less than 20 times in 4 years). I've turned to a natruopath who has lead me to consider Celiac sensitivity/intolerance. I am struggling keeping my daughter gluten and caesin free as the ND recommends.

Please share your experience I could really use the help right now as my family thinks I am taking this too far.

Thanks!

Anne

Hi, My daughter is 5 and just got diagnosised 12 weeks ago. We've seen a dramatic change in her life from being a kid with chronic and awful constipation to a child who is now healing and feeling well.

With her finally starting to feel better I now willing to try to address her constant complaints about her skin.

She says she itches all over. She has some bumps on the back of her arms and some on her belly that always seem to be there. They got a little better and her skin seemed smoother the first couple of weeks on the gluten free diet.

The peditrician has said it's dry skin but I'm not sure since she is so adamant about it bothering her. I've tried heavy duty moisturizer with seeing no improvement over the years.

We've had her allergy tested and nothing came up. The only thing that did show was crazy IGG levels (50) the second time she got tested for Celiac. The first time she was a weak positive and the doctor dismissed it since she was a constipated kid. Wrong.

So, I'm wondering who do I ask about this. I put a hydrocortonsone cream on it and it she can settle down to sleep especially at night.

Do I ask the GI if it's related to Celiac? Go to a dermatologist, go back to the peditrician. It took a lot of doctor visits to get her diagnosised and I don't want to be missing something here.

Thanks for the input.

Suzanne

Elizabeth's mom. Finally off heavy duty laxatives after 5 years

  • 1 month later...
Mother of a Celiac Rookie

Hi, My daughter is 5 and just got diagnosised 12 weeks ago. We've seen a dramatic change in her life from being a kid with chronic and awful constipation to a child who is now healing and feeling well.

With her finally starting to feel better I now willing to try to address her constant complaints about her skin.

She says she itches all over. She has some bumps on the back of her arms and some on her belly that always seem to be there. They got a little better and her skin seemed smoother the first couple of weeks on the gluten free diet.

The peditrician has said it's dry skin but I'm not sure since she is so adamant about it bothering her. I've tried heavy duty moisturizer with seeing no improvement over the years.

We've had her allergy tested and nothing came up. The only thing that did show was crazy IGG levels (50) the second time she got tested for Celiac. The first time she was a weak positive and the doctor dismissed it since she was a constipated kid. Wrong.

So, I'm wondering who do I ask about this. I put a hydrocortonsone cream on it and it she can settle down to sleep especially at night.

Do I ask the GI if it's related to Celiac? Go to a dermatologist, go back to the peditrician. It took a lot of doctor visits to get her diagnosised and I don't want to be missing something here.

Thanks for the input.

Suzanne

Elizabeth's mom. Finally off heavy duty laxatives after 5 years

Hi- I know that this is an older post, but I just joined the forum and have a daughter who is 6 & was recently diagnosed with Celiacs with a blood test. This comes after two years of unexplained itching all over with no rash. It is usually worse at bedtime and we frequently will give her Benedryl to help. No lotion seems to help, and we have been completely organic for over a year now too. Only using California Baby Sensitive Skin lotion and bath wash. I have never been able to find an answer for this. We have seen multiple allergists, nutritionists, etc., etc. Doctors always told me it was because she was a red head and just extra sensitive...I'm hoping with her new diet that this will subside. She has only been gluten free for 5 days so far. Has your daughter's itching gotten better??

  • 2 weeks later...
MeghanEileenReilly Newbie

I am actually a red head and I have had severe itching all over, with no rash for the past three years. I am 24 and been to every specialist, had every blood test, biopsy, etc to no avail. I am suffering daily and just tried going gluten-free. It has only been one week and I dont see any change but am hoping with time and commitment, it will help.

Has your daughter's itching gotten any better? Please let me know!

Meghan

jerseyangel Proficient

I am actually a red head and I have had severe itching all over, with no rash for the past three years. I am 24 and been to every specialist, had every blood test, biopsy, etc to no avail. I am suffering daily and just tried going gluten-free. It has only been one week and I dont see any change but am hoping with time and commitment, it will help.

Meghan

Hi Meghan and welcome :)

That so frustrating--have you tried switching to unscented laundry detergent, fabric softener, soaps and hair care? I had that itching after going gluten-free and found that I was suddenly sensitive to those sorts of things. Worth a try if you haven't already.

MeghanEileenReilly Newbie

Hi Meghan and welcome :)

That so frustrating--have you tried switching to unscented laundry detergent, fabric softener, soaps and hair care? I had that itching after going gluten-free and found that I was suddenly sensitive to those sorts of things. Worth a try if you haven't already.

Yes :( Unfortunately, I did all that in the first few weeks it started....now three years later it is worse than ever!!! I have traveled all over the country going from doctor to doctor....the weird thing is my body has no rash so doctors dont "SEE" anything wrong with me. Still searching...

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      CT with contrast.

    2. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      2

      Shingles - Could It Be Related to Gluten/ Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748

    Megannnnn
    Newest Member
    Megannnnn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • JoJo0611
      I didn’t know there were different types of CT. I’m not sure which I had. It just said CT scan with contrast. 
    • Scott Adams
    • Scott Adams
      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
    • Clear2me
      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.