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Ugh. Dh But The Dermatologist Is Stupid
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I've had this rash on and off for years. The last 9 months its getting worse and worse. I was gluten-free for a year ago for a year but life dumped on me and I went back to the dark side. I was okay for a while but now I'm flairing with this rash on my ankles feet and shins. Sometimes it's my hands also. I have scars.... It itches so uncontrollable that I scratch literally until I bleed. I finally found a dermatologist on my health plan and he told me that there is no rash with Celiac, and that it's never on the legs or feet. Mine is bilateral on my legs. I told the guy to go back to school and learn about this and left. So there is no one else on my plan, and and I'm still itchy. Today was my first full day gluten-free in a year or so. I forgot how hard it was!! My boyfriend went gluten-free with me also so I wasn't alone. He's wonderful. I'm trying to teach him about it.

How do I post pictures so you can tell me what you think? The dr also told me he can't biopsy it unless the rash came and I didn't touch it. Yeah try and tell me not to scratch this thing.....

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Uhmmm, my understanding of biopsying for DH is that you take a punch biopsy of clear skiin adjacent to the active lesion. It wouldn't seem to make any difference if it were scratched or not, so long as it was active. He is (or should be) looking for antibodies in the skin adjacent, not in the lesion itself :wacko:

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AND you have to be actively eating gluten diet or the dh biopsy will be negative. Don't stop eating that gluten if you are determined to get a dx.

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    • Ugh!  So, you have early stages of celiac disease and that was after being gluten light?  It is a shame that your doctor is not comfortable about giving you a formal diagnosis because you don't have enough damage!  Time for a new GI.  You can also as for another pathologist to read your biopsies, but seriously....... Have a conversation with your current doctor about the reasons why he is hesitating.  He would rather you continue to become more ill or improve your health?   Are you going to be scarred for life with a celiac disease diagnosis? Maybe he is one of those people who think it is impossible to live with wheat, rye or barley!   I don't get it! 
    • Thanks for the comments. With Dr. Google, I have seen mast cell disorder pop up.  It seems like I need to eliminate some basics before heading in that direction. So, another question...is it possible that symptoms of celiac need time to "build up" over time? For instance,  I started reintroducing gluten and coffee last week to prepare for my GI appt.  However, nothing really seemed to happen except a little knee crankyness (which I can easily attribute to hiking).  Yet, yesterday I had a huge bagel at work, had itchy forearms, and then had two huge hives appear later.  Today, I had another bagel and in a few hours I had a few red fingers that were itchy and numb feeling in the tips.   I know histamine intolerance is a possibility, but wouldn't that show up as an extremely large hive with my allergy skin test? Also, I had to go into work today and yesterday. I'm wondering if that environment could contribute to the issue (I'm a high school teacher).  
    • Hi Fidel, The original poster hasn't been on the site for several years, so you may not get a response from them. But welcome to the forum!  
    • False positive or negative?  I was diagnosed with Coeliac and the more rare Dermatitis Herpetiforma.  I know that symptoms like youre describing could be a whole variety of conditions.  I have a friend who has ulcerative colitis whose symptoms are similar to what you are describing.  You could have ulcers, but keeping it real i have to say youre also describing opiate withdrawl.  So if youve been on pain killers prescibed or not that could be it also.  Best of luck
    • Hi Megan, Regarding dairy, celiac disease damages the villi that make the lactase enzyme that digests milk sugar (lactose).  So sometimes people can't digest dairy well when they first start the gluten-free diet.   Over time that may change as you heal.  The ability to digest dairy doesn't always come back, but it may. Throwing up can be caused by excess gas in the stomach.  That's pretty common when starting the diet.  Sugar and carbs will make it worse.  Udi's bagels are made of various flours so they are full of carbs.  Carbs are turned into sugar in the body and that feeds the bacteria, hence the gas. You could be reacting to various foods, so eliminating one problem food is not going to fix all the problems.  I think it would be more helpful to start by following the tips in my earlier post than to  try a full fledged elimination diet at this point.  Elimination diets can take a while to do. If you can stick to eating meats, vegetables, nuts for now that is a good thing.  No processed foods (like Udi's) or other baked goods.  This is probably the fastest way to get better and learn what is safe to eat.  Once you are feeling better for a few weeks then you can try adding in one new food a week and see how it goes.  The gluten-free diet is a lifetime commitment so you may as well start out right and take your time.  Whole foods are a good way to go at the beginning.  If you cook your own food you know what is in it.  That's important to know for us.  Avoiding any processed food with more than 3 ingredients is also good.  The fewer ingredients you are eating the simpler it is to figure out a problem. I wouldn't worry about the idea of the throwing up thing making you react to dairy.  Celiac is known to cause a problem with dairy intolerance.  
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