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- Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis6Skin issues
I’m sorry you’re going through all of this. It sounds very stressful, especially when you feel that your symptoms are not being taken seriously. Until you are seen next week, it may help to keep the focus very practical: take clear photos of the skin sores, write down a timeline of symptoms, list all medicines, eye drops, supplements, implants/leak history, an... -
- Scott Adams replied to N Young's topic in Doctors1
Frustrated with Providers
You are not being unreasonable. A negative celiac blood test after 25 years gluten-free does not rule out celiac disease, because the antibodies usually fall once gluten is removed. It may simply show that your gluten-free diet is working. I would ask the doctor to add a clear note to your chart stating that the test was done while you were strictly gluten... -
- Scott Adams replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms12
Iron loss and potential celiac.
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- Jmartes71 replied to Jmartes71's topic in Dermatitis Herpetiformis6Skin issues
I went to ER on the 30th because I didn't want to wait and saw dr at desk for intake. I went for NOTHING!. ER Dr was very nice but made it seem as if I was a nut case rater than coming in for real issues calmly explaining its staph! Staph, by look no blood test, no skin test. No looking in my nose and throat was given a prescription for jock cream and some... -
- N Young posted a topic in Doctors1Frustrated with Providers
I have been Gluten Free for 25 years and havent eaten gluten knowingly during that time. Such a rocky life, I have had issues since I was 16 when physicians stated I needed to see a psychiatrist. I am now 70 years old. I also had Dermatitis herpetiformis. I had negative tests on biopsy, blood test etc but no doctor mentioned that I needed to do a gluten...
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By Scott Adams · Posted
I’m sorry you’re going through all of this. It sounds very stressful, especially when you feel that your symptoms are not being taken seriously. Until you are seen next week, it may help to keep the focus very practical: take clear photos of the skin sores, write down a timeline of symptoms, list all medicines, eye drops, supplements, implants/leak history, and any test results, and bring that to the dermatologist. If there is drainage, spreading redness, fever, worsening pain, eye involvement, or signs of infection, that needs prompt medical care. I would be cautious about assuming parasites or staph without testing, and also cautious with new supplements or putting vitamin C directly on sores, since irritated skin can get worse. A dermatologist can culture lesions, biopsy if needed, and refer to infectious disease if the findings point that way. On the celiac side, I understand your concern for your son, but being HLA-DQ2 positive does not by itself mean he has celiac disease; it means he has a genetic risk. If he is eating gluten now, this is actually the best time for proper celiac blood testing before he tries a gluten-free diet. His symptoms, weight, congestion, and family history are worth discussing with a gastroenterologist, but he should not be told he has celiac based only on HLA status. For your own care, try to keep pushing for objective testing and clear documentation in your records, because that is often what gets doctors to take the next step. -
By Scott Adams · Posted
You are not being unreasonable. A negative celiac blood test after 25 years gluten-free does not rule out celiac disease, because the antibodies usually fall once gluten is removed. It may simply show that your gluten-free diet is working. I would ask the doctor to add a clear note to your chart stating that the test was done while you were strictly gluten-free, that you have a long history of dermatitis herpetiformis and strong clinical response to the gluten-free diet, and that celiac disease remains your working diagnosis unless properly reassessed with a supervised gluten challenge, which you may not want or need at this stage. This should help prevent future confusion. It is understandable to feel frustrated, especially after decades of being dismissed, but this may be fixable with a calm conversation and a chart correction rather than changing doctors. -
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I went to ER on the 30th because I didn't want to wait and saw dr at desk for intake. I went for NOTHING!. ER Dr was very nice but made it seem as if I was a nut case rater than coming in for real issues calmly explaining its staph! Staph, by look no blood test, no skin test. No looking in my nose and throat was given a prescription for jock cream and some pills ! I made the mistake of saying Im waiting on Infectious disease. She asked how did I get referral and I said I did it online.The next day I checked the status and it was denied! I did get a referral to the dermatology office i went to last year that over charged me and did a biopsy on me stating inconclusive! I went to another dermatologist and he stated I should see Infectious disease at place i put in referral. With that I contacted that dermatologist and waiting to see if he thinks dermatology or Infectious disease is the route.I do have appointment for dermatology next week.Until then i did purchase Zahler paraGuard advance intestinal flora support from Sprouts. Im also very alarmed that the fact celiac isn't addressed properly infact its downplayed. When I had my son tested for HLA-DQ2 and it came out positive because he is eating everything and he is extremely skinny but he isn't dealing with severe diagestive issues because thats all he knows NOW or yet because he is still young 21.I too didn't know any difference when i was that age because thats all we know.Life changes will get him in latter years im afraid because what im dealing with.That scares me.The specialist we went to was only about congestion he is getting.He is getting congestion because he is eating what he isn't supposed too! Zero talk about celiac and HLA-DQ2 positive. Only talk was he is congested because we live in the Valley! They wanted to do surgery! I did write again to our district leader considering when I did call, the guy stated he knew all about celiac. I really wanted to tell him NO YOU DON'T but held my tongue. For my skin sores the cream given didn't do anything because ive also had in past.Ive been putting liquid vitamin c on it and taking vitamins which is making a little difference just with the last few days of doing.
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I have been Gluten Free for 25 years and havent eaten gluten knowingly during that time. Such a rocky life, I have had issues since I was 16 when physicians stated I needed to see a psychiatrist. I am now 70 years old. I also had Dermatitis herpetiformis. I had negative tests on biopsy, blood test etc but no doctor mentioned that I needed to do a gluten challenge. I went on an elimination diet and found relief on the Dermatitis within a month. I have no doubt that I am celiac and very sensitive now. Now my issue is that I changed physicians due to retirement and he performed a blood test and included a celiac test. I was very upset because I did not request the test and had not been eating gluten for 25 years. Of course the test was negative. My question - Will this cause me any issues with health treatment if my records now have that I dont have celiac? I like this physician and I am appalled that he performed the test. (he told me his brother is also celiac). I feel that we are still living in the dark ages. I dont want to cause problems because I rarely need health treatment since I live a fairly healthy lifestyle. Since I am at this age and been through so much getting to this point am I being unreasonable for being upset? I am not expecting to see this physician for another 2 months. Need to know if I can expect issues with future treatments. How can a physician not know about the gluten challenge this day and age?
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