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

Can You Diagnose celiac disease Through The Rash?


shaleen

Recommended Posts

shaleen Rookie

I've been having problems with my 18 month old. He was diagnosed with failure to thrive (he's 17 pounds and 18 months old). The GI doc says she thinks it's celiac disease however she wants me to put him BACK ON the gluten for at least 2 months before she will do an endoscopy on him. He is on day 6 and already developed an ear infection (his first one) and got this rash back that he basically had since he was 6 months old (it disappeared when I took gluten, corn and dairy out of his diet about a month or so ago). It's a hard, red, burn looking rash on his forearms and legs. Anyway, someone told me that rather than put him through 2 months of crap, to have the rash analyzed by a dermatologist and we can make the diagnosis that way. Does anyone know if that is possible??


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

Dermetitis Herpetformis (the rash) is diagnostic for celiac disease, but you need a derm who knows how to biopsy it - you biopsy NEXT TO the rash, not on it directly.

brendab Contributor

My mother in law had her celiacs diagnosed by the rash.

MacieMay Explorer

I've been having problems with my 18 month old. He was diagnosed with failure to thrive (he's 17 pounds and 18 months old). The GI doc says she thinks it's celiac disease however she wants me to put him BACK ON the gluten for at least 2 months before she will do an endoscopy on him. He is on day 6 and already developed an ear infection (his first one) and got this rash back that he basically had since he was 6 months old (it disappeared when I took gluten, corn and dairy out of his diet about a month or so ago). It's a hard, red, burn looking rash on his forearms and legs. Anyway, someone told me that rather than put him through 2 months of crap, to have the rash analyzed by a dermatologist and we can make the diagnosis that way. Does anyone know if that is possible??

It will probably be tough to get a Derm to do a biopsy on him. Have you done any research on DH? Do you think it is DH...or just a hive like reaction? Gluten can cause both. I too am having problems with my 18 mos old ( I think i've replied to one of your previous posts ). She is growing OK but the rashes are CRAZY. How long would you say your sons rashes took to go away, when you eliminated the dairy, corn and gluten? We have rashes that come and go but then she has some where the inflammation has caused damage to her skin. This is on her knees, elbows, and hands. These are not going away. I think they need some sort of medicine or they are going to take a long time to go away. Does this sound anything like you are going through? Thanks

shaleen Rookie

It will probably be tough to get a Derm to do a biopsy on him. Have you done any research on DH? Do you think it is DH...or just a hive like reaction? Gluten can cause both. I too am having problems with my 18 mos old ( I think i've replied to one of your previous posts ). She is growing OK but the rashes are CRAZY. How long would you say your sons rashes took to go away, when you eliminated the dairy, corn and gluten? We have rashes that come and go but then she has some where the inflammation has caused damage to her skin. This is on her knees, elbows, and hands. These are not going away. I think they need some sort of medicine or they are going to take a long time to go away. Does this sound anything like you are going through? Thanks

Our rashes are red and scaly...come on rather quickly but take forever to go away. The redness fades once the culprit is taken out of his diet (not sure exactly what the "culprit" is yet) but the hardness lasts for weeks. It usually occurs on his forearms and legs. He's never gotten any of the rashes on the trunk of his body or his hands or feet....oh, I take that back. Last time he got the rash it included his had, by his thumb, where he held a piece of corn on the cob...and now he even has a slight rash around his mouth. I did notice though, once I took gluten, dairy and corn out of his diet, within a week or so the rashes were COMPLETELY gone.

MacieMay Explorer

Our rashes are red and scaly...come on rather quickly but take forever to go away. The redness fades once the culprit is taken out of his diet (not sure exactly what the "culprit" is yet) but the hardness lasts for weeks. It usually occurs on his forearms and legs. He's never gotten any of the rashes on the trunk of his body or his hands or feet....oh, I take that back. Last time he got the rash it included his had, by his thumb, where he held a piece of corn on the cob...and now he even has a slight rash around his mouth. I did notice though, once I took gluten, dairy and corn out of his diet, within a week or so the rashes were COMPLETELY gone.

Thanks for the feedback. It doesn't sound like, we have the same thing we have going on here. I do think my daughter has a gluten intolerance or maybe even celiac, but she has something else too. It's heartbreaking, when your kids are sick. I hope you find your answers, it's so difficult to get a diagnosis for a small child. I just take it one day at a time. Good Luck!!

  • 4 weeks later...
dh mom Newbie

Thanks for the feedback. It doesn't sound like, we have the same thing we have going on here. I do think my daughter has a gluten intolerance or maybe even celiac, but she has something else too. It's heartbreaking, when your kids are sick. I hope you find your answers, it's so difficult to get a diagnosis for a small child. I just take it one day at a time. Good Luck!!

Hi, my heart goes out to both of you for having such young kids with a rash. Our son was 18 when diagnosed. I don't really have any advice for you except that please know DH is EXTREMELY ITCHY. So if your kids are inordinatly cranky, they are probably really itchy.....

just a random thought, but do bottles have gluten? I know paper plates contain gluten and our son cannot eat off of them. or perhaps their bath soap/shampoo? I agree with you. Go to a city and find a PEDIATRIC dermatologist. That is a big mistake which I made. I didn't realize how specialized docs are these days. I thought a dermatologist was specialized enough. Look for pediatric docs.

***Boston Mass has a center for blistering skin diseases. Dr. Ahmed is known world wide. In fact, the DH gene is named after him. He treats folks from all over the u.s. and other countries.

Dr. Ahmed Center for Blistering Skin Diseases, 70 Parker Hill Ave #208 Boston, Ma

Good luck


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748

    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    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

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. 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: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.