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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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moleface

Parallel rash on chest + belly button?

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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!

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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.

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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.

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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

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Posted (edited)
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.  😊

Edited by cyclinglady

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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.

 

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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..

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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.

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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.  

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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 .

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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:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3614139/

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

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3369470/#!po=51.5000

Hope this helps.

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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.

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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:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3614139/

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

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3369470/#!po=51.5000

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

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