Does anyone who has a definite dx of celiac's suffer from these skin outbreaks? Have they been dx'd? What kind of test was used to dx them? I just learned that what I've been told is 'shingles' could be celiac's symptom called 'dermititis herpetiformis'. They're extremely itchy and they never stop! My granny had gluten intollerance, she also suffered from what she was told were shingles, and she died of stomach cancer. This was in the early 60s and she never got a definite dx of celiac's but since it's genetic, I suspect my symptoms may be undiagnosed celiac's. I've developed many autoimmune and neuro symtoms also, which could be caused by long-term, undiagnosed celiacs.
I have been diagnosed with Celiac for almost a year now. I do not have dermitits herpetiformis but have heard about it and keep a watch out for any outbreaks. As you know Celiac disease is ABSOLUTELY genetic and it sounds like from you family history you may also have Celiac. My sister developed many auto-immune diseases (they cluster) before they were all traced back to the culprit...Celiac disease. If she would would have been diagnosed correctly years ago then she would probably not have all of the serious health issues she has now. I would urge you to get the biopsy ASAP to see if you do have Celiac which is the only test to actually be diagnosed with Celiac Diseases. Unfortunatley, with the blood tests you can have false negatives as well as false positives and as I have learned many doctors do not know that much about Celiac and do the blood tests incorrectely. Once you know...you go Gluten free and symptoms...like your rash will go away....if you continue without getting correctly diagnosed then unfortunately you will continue to acquire more health issues.
Thanx so much! I had the biopsy done about 1 1/2 years ago, with a negative dx for celiac, but my symptoms just keep coming. Not sure how I'll proceed. Perhaps my gastro will order another endo. I wonder if a negative dx with the endo is the 'final answer' or if it can progress and maybe show up at a later date with another endo? I was just denied a capsule endoscopy due to lower ab cramping for the last 4 years with no dx. I know celiac people don't usually have gastro symptoms, but I've had a lot of complications along the way with lots of antibiotics so that's why I want to get to the bottom of this cramping. It's all becoming overwhelming...
my daughters celiac did not show up on a biopsy. the disease can be patchy and the scope can only get in about 6 feet----and there are 22 ft of small intestine. wheni asked about my daughter' not haveing damage, he told that with their numbers fromt the Ttg test, that they probably had damage.
I have Celiac Disease, an undetected autoimmune disease, a blood clotting disorder and even more! I'm only 39 and I've already had a DISKECTOMY w/fusion and instrumentation, an upcoming complete Hysterectomy and possibly another surgery on my lumbar spine.
After reading a lot of comments from here and other places I can tell you that digestional problems are absolutely part of celiac. I had years of testing - upper & lower GI, endoscopy & colonoscopy (at the same time) and after this went on and on I begged for the blood test and my positive was off the chart. I am also a vegetarian so my diet is really trying. Gluten is hard to get completely away from because it can be in e everything from vitamins to shampoo. How a persons body responds depends on so many things and it really is an individual disease. I have had shingles 6 times as well and have had eczema my entire life so rashes from anything - especially Celiac don't just stop when you go on a gluten free diet and if it does I would question that in it of itself.
Good luck to anyone dealing with health issues and always go with your gut - if my doctors would have taken me seriously years ago I know for a fact I wouldn't be so bad off with my health.
Yes, I believe you are very likely to have Celiac disease and DH. Mostly my skin eruptions were on one arm, but I did have a couple on my buttocks. They were little blisters with watery fluid that did not want to heal. Some lasted for a year because I didn't realize how important it is not to scratch them. I am sure it is caused by the nutritional deficiency aspect of Celiac disease. So get tested, and while you wait for the results and then the diet to kick in after you probably do get diagnosis, start taking gluten-free vitamins and minerals. Take vitamin D 2000 IU, calcium at night, magnesium in the morning, a multivitamin with minerals that includes zinc, lutein 20 mg if you are in your 40s. You can feel better. The first week on the diet often makes you feel better in some ways, but kind of zapped while things adjust.
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