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

Parallel rash on chest + belly button?


moleface

Recommended Posts

moleface Explorer

For several years, I've been getting a recurring rash on my upper torso. It always extends from the front of my shoulders down my chest, then becomes more sparse toward my stomach, eventually turning into in solid red ring on and around my belly button. The pattern is always almost exactly parallel on both sides of my chest.

Has anyone else here experienced this? I know this sort of thing is common with celiac disease, but I've read very little about it being in such a specific pattern. It always coincides with an autoimmune flare-up. I'd go to a doctor, but every time I've asked doctors about the rash, they just write it off as "skin irritation" and sidestep my questions. After four or five doctors did that, I stopped trying to get a diagnosis.

I'm not self diagnosing; I tested positive for celiac via a blood test four years ago but doctors won't listen to me after a gastroenterologist's later celiac test came up negative. He only had me eat gluten for two days before giving the test, and he'd also never heard of celiac causing tooth enamel defects, so I'm assuming that he's just ill-informed about the disease.

Thanks!


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

It's certainly possible. I know my rash has what I call it's "favorite places & patterns". It can be absolutely uncanny. 

Do you have copies of the positive test from 4 years ago? And what about the false negative one? Why do you tell doctors about the false negative one? Just don't mention it to them.

moleface Explorer

I always bring copies of my medical records with me to doctor visits. I've posted about this elsewhere on this forum, so I'll try not to be long-winded, but medical records don't seem to convince doctors.

I got referred to the gastroenterologist by a physician who thought I was a hypochondriac. He gave a blood test, which I pointed out can't detect celiac unless the person has eaten gluten for months on end, but he sidestepped my question and said "Oh, I wouldn't ask you to eat a Twinkie and get sick." Once the test came back negative, he gave me a condescending lecture about "assuming things." After that frustrating experience, I went to the hospital and got copies of all my medical records.

Even with later doctors I've seen, bringing in copies of my diagnoses doesn't seem to make any difference. It seems that being labeled a hypochondriac overrides all other evidence in the minds of most doctors.

I wouldn't have necessarily complicated matters by telling my doctor about the negative results, but any subsequent doctors I see always ask for the previous physician's records, which includes the hypochondria diagnosis and the negative celiac blood test.

Doctors always avoid any questions about celiac and instead give me printouts of high-school-level nutrition advice. They also make comments about my "lifestyle", which seems to imply that my constant diarrhea is caused by a poor diet. I've spent the last decade taking methyl b12, 50 billion probiotics, turmeric, etc., plus drink a gallon of water a day and eat literally no processed foods, so I have no use for basic advice to drink water and eat fruits and vegetables.

Kimmykarma Newbie

I was recently diagnosed with celiac disease and I have been getting a rash on my chest and stomach area almost every day. I thought you only get a rash when you have eaten gluten however I haven’t eaten any so it just a symptom of the diease ? Thank you in advance

cyclinglady Grand Master
14 hours ago, Kimmykarma said:

I was recently diagnosed with celiac disease and I have been getting a rash on my chest and stomach area almost every day. I thought you only get a rash when you have eaten gluten however I haven’t eaten any so it just a symptom of the diease ? Thank you in advance

Is it insanely itchy (hallmark of DH)?  The rash could be anything, but if it is DH, then keep in mind that it can take months to years for the antibodies in the skin to dissipate.  It can show up even if you have not been exposed to gluten for a while.

I do not have DH, but I can suggest that you read through the DH section of the forum for valuable coping tips!  

You mentioned “getting a rash every day”.  Are you sure it is a rash or could it be hives?  Hives can appear and disappear within hours (and they are itchy too).  

Welcome to the forum.  ?

moleface Explorer
14 hours ago, Kimmykarma said:

I was recently diagnosed with celiac disease and I have been getting a rash on my chest and stomach area almost every day. I thought you only get a rash when you have eaten gluten however I haven’t eaten any so it just a symptom of the diease ? Thank you in advance

Some people get rebound symptoms when they go gluten-free, though it's a minority of patients. Maybe that's the issue?

When I first went gluten-free years ago, I dropped even more weight and my inflammation worsened for several weeks. I know I wasn't imagining it, because at the time I had no idea that a certain percentage of people get "withdrawal" from gluten exposure, yet I looked and felt like death. I went down to 130 pounds at 6'1".

If you're relatively new to the gluten free diet, it's possible that you're getting cross contamination. Also, from my own experience, I find that I started reacting severely to even tiny amounts of contamination after going gluten free, even though I didn't get nearly as  sick back when I was regularly eating loads of gluten.

One culprit could be foods labeled "gluten free" - the standard is 20ppm. Unless you're eating inherently gluten-free food, that's always a possibility. I've gotten symptoms from supplements that were labeled gluten-free but were produced in the same facility as wheat products.

 

Kimmykarma Newbie
8 hours ago, moleface said:

Some people get rebound symptoms when they go gluten-free, though it's a minority of patients. Maybe that's the issue?

When I first went gluten-free years ago, I dropped even more weight and my inflammation worsened for several weeks. I know I wasn't imagining it, because at the time I had no idea that a certain percentage of people get "withdrawal" from gluten exposure, yet I looked and felt like death. I went down to 130 pounds at 6'1".

If you're relatively new to the gluten free diet, it's possible that you're getting cross contamination. Also, from my own experience, I find that I started reacting severely to even tiny amounts of contamination after going gluten free, even though I didn't get nearly as  sick back when I was regularly eating loads of gluten.

One culprit could be foods labeled "gluten free" - the standard is 20ppm. Unless you're eating inherently gluten-free food, that's always a possibility. I've gotten symptoms from supplements that were labeled gluten-free but were produced in the same facility as wheat products.

 

Thank you, I have been gluten free about 6 months I did not know about cross contamination until recently. I have been trying to find if it was a intolerance or celiac I finally had enough symptoms for a long period of time for a doctor to run the test more so to shut me up. I tested positive now I’m trying to figure out what to expect. Thank you for your thoughts..


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



Celiac.com Sponsor (A8-M):



Kimmykarma Newbie
9 hours ago, cyclinglady said:

Is it insanely itchy (hallmark of DH)?  The rash could be anything, but if it is DH, then keep in mind that it can take months to years for the antibodies in the skin to dissipate.  It can show up even if you have not been exposed to gluten for a while.

I do not have DH, but I can suggest that you read through the DH section of the forum for valuable coping tips!  

You mentioned “getting a rash every day”.  Are you sure it is a rash or could it be hives?  Hives can appear and disappear within hours (and they are itchy too).  

Welcome to the forum.  ?

It’s hives, it shows up about an hour after  I eat last for several hours then goes away. Sometimes it may last until the morning it itches a little but not all of it just a small section. I’m noticing it seems to happen after I eat meat, I’m wondering if it could be the protein In meat? Thank you I’m glad I found you guys sometimes it can get depressing my husband has been wonderful in finding foods I can eat but we are limited to where we can eat out at and I’m always getting frustrated with the break outs because I don’t know it is happening.

cyclinglady Grand Master

Your hives might not be related to gluten.  Last year, I suffered with daily hives (appeared every afternoon) that started with a tummy ache, which would progress to an itchy head and then thousands of hives from arms, torso, legs and even the bottom of my feet.  They resolved by morning until the next afternoon.  My allergist and GI suspected chronic autoimmune hives that were more likely related to Hashimoto’s Thyroiditis or just a “stand-alone “ Autoimmune Disorder.  My hives lasted about six months.  At the time, my gliadin (celiac) and thyroid antibodies were also elevated very high.  So who knows?  

My allergist recommendation antihistamines which worked.  I ceased the antihistamines when my hives resolved.  They do appear every once in a while after an insect bite, but not as severe.  

Kimmykarma Newbie
36 minutes ago, cyclinglady said:

Your hives might not be related to gluten.  Last year, I suffered with daily hives (appeared every afternoon) that started with a tummy ache, which would progress to an itchy head and then thousands of hives from arms, torso, legs and even the bottom of my feet.  They resolved by morning until the next afternoon.  My allergist and GI suspected chronic autoimmune hives that were more likely related to Hashimoto’s Thyroiditis or just a “stand-alone “ Autoimmune Disorder.  My hives lasted about six months.  At the time, my gliadin (celiac) and thyroid antibodies were also elevated very high.  So who knows?  

My allergist recommendation antihistamines which worked.  I ceased the antihistamines when my hives resolved.  They do appear every once in a while after an insect bite, but not as severe.  

Thank you that gives me a new direction to go .

knitty kitty Grand Master
2 hours ago, Kimmykarma said:

It’s hives, it shows up about an hour after  I eat last for several hours then goes away. Sometimes it may last until the morning it itches a little but not all of it just a small section. I’m noticing it seems to happen after I eat meat, I’m wondering if it could be the protein In meat? Thank you I’m glad I found you guys sometimes it can get depressing my husband has been wonderful in finding foods I can eat but we are limited to where we can eat out at and I’m always getting frustrated with the break outs because I don’t know it is happening.

 

2 hours ago, Kimmykarma said:

Thank you that gives me a new direction to go .

Have you been checked for Lyme Disease?  Having a reaction of hives after eating meat is connected to Lyme Disease.  See this article:

Open Original Shared Link

Here's another article about skin problems associated with Celiac Disease.

Open Original Shared Link

Hope this helps.

apprehensiveengineer Community Regular

I have cold urticaria (hives in response to large temperature changes). Basically, I break out in hives if I take a hot shower or go from inside-outside on a cold day and don't wear enough clothing. The hives primarily appear on my upper stomach/lower chest, or on uncovered skin exposed to the temperature swing. I also get hives when I contact or ingest things I am allergic to (soy, grass, cats). All of these issues were diagnosed formally by an allergist/immunologist prior to my being gluten-free. You might consider seeing a specialist to see if you have any allergic conditions that might be contributing to your hives.

I don't think any of these allergic problems I have have anything to do with gluten/celiac specifically, but these and my other immune issues (asthma) improved quite a lot after being gluten-free for a while. If that is indeed your issue, you might find that to be the case.

Kimmykarma Newbie
7 hours ago, knitty kitty said:

 

Have you been checked for Lyme Disease?  Having a reaction of hives after eating meat is connected to Lyme Disease.  See this article:

Open Original Shared Link

Here's another article about skin problems associated with Celiac Disease.

Open Original Shared Link

Hope this helps.

It’s interesting I am a Dr. Of Naturopathy out of South Florida I started my own practice “My Total Body Wellness “ I do bio- energetic scans which are scans to show where your body might be having imbalances that could turn into health related issues in the future. I did scan for a few different Lyme imbalances I never knew that the hives and meat could be related. Thank you and thank you for the links I’m going to research today. Have a great day

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,185
    • Most Online (within 30 mins)
      7,748

    wmkoehler
    Newest Member
    wmkoehler
    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

    • 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.
    • Sheila mellors
      I asked about the new fruit and nut one and the Dietician said yes I could eat it safely. Hooe this helps
×
×
  • Create New...