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Are the symptoms something else possibly or is this doctor just inexperienced? Would love some advice

mrenee

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mrenee Newbie
mrenee
Posted

Hi, I'm really struggling to figure out what is going on with me! I'm a 19 year old female who has really been struggling with some odd symptoms since December. From my research, a gluten insensitivity or more specifically Celiac Disease makes the most sense with my clinical manifestations. Around Christmas time, I started having mild itching of my skin. No big deal, it was annoying but I didn't think much of it. Then I went to Hawaii for a week and my symptoms got really bad. The itch was isolated to just my lower back and my butt for a little but red bumps started to appear. I assumed I was allergic to one of the organic sunscreens I was wearing so I didn't think anything of it. I came home and the rash got so much worse. My family worried it may be the Dengue fever rash since there was an outbreak in Hawaii. Of course, it wasn't, and I just assumed it would go away on its own in a few days, a week tops. I finished out break, miserable, and came back to school. The itch just worsened and the rash progressed to a point that I knew I had to see a doctor. I went to the doctor and she told me it appeared to be folliculitis. The rash was still pretty isolated to that same area so I took some topical steroid cream and lotion and went on my way. A week later, no improvement. In fact, the rash seemed to be spreading all over my body. The doctor then prescribed me Keflex, an antibiotic for particularly bad folliculitis. I took this and of course, no improvement. All the while this rash is just progressing. I changed everything: my soap, my detergent, my lotion, etc. I bought a humidifier, kept up with strict moisturizing, started taking fish oil. None of this helped. When I visited my sister, who is in the medical field, she suggested to me I look at my diet, the only thing I had not yet changed. Suddenly, it all started to click. I have been losing feeling in my feet and hands lately but just assumed it was from the hours of studying (I am currently halfway done with nursing school) along with suffering odd joint pain. I've had random episodes of heartburn and recently have begun to stutter a little when I speak, something that can occur with Celiac, from my research. I had a derm appointment and I figured I would keep it even though a gastroenterologist would probably be a more knowledgable doctor. When I showed up to the dermatologist, he took one look at the rash solely on my wrist (it is LITERALLY everywhere) and said, "It's eczema." I spoke up and told him that I have done absolutely everything that would remedy eczema (I've had it before) and shared with him what I thought it was. He agreed to run some tests but didn't seem too familiar with it. He took a biopsy from one of the lesions on my back BUT according to this website and multiple sources DH cannot be biopsied from the lesion. The biopsy must come from the unaffected skin nearby. So I knew that wouldn't show anything. They took blood but they called me on Friday and told me for some reason a gluten intolerance test was not run so I need to return on Monday to get that test done. However, as expected, they told me the biopsy just showed a typical blister or some crap like that and I can tell they probably think I'm totally off base. But I just know it's gluten. I stopped eating it for a few days because I was so miserable and felt an improvement. I started again on Friday when they called me because of course I want the test to be accurate and I'm right back to miserable again. Basically my questions from this long story is:

1. Do you think my symptoms are consistent with those of Celiac or a gluten intolerance? (I can attach pictures of the rash if needed to help recognize, I have plenty)

2. Is there a way to find a doctor that is specialized and familiar with this type of Celiac manifestation?

3. HOW ON EARTH CAN I HELP THIS ITCH? It is truly making me go INSANE. What has worked for you all?

Thank you so much, it means a lot!

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Bekkykaz521 Newbie
Bekkykaz521
Posted

I personally had way more GI symptoms then skin issues. The easiet way is to have celiac blood panel drawn. You must be eating gluten for it to be accurate. 

SLLRunner Enthusiast
SLLRunner
Posted

I don't think there is an actual test for gluten sensitivity, that you are actually tested for celiac. Is that tomorrow? 

You need to be under the care of a GI, so I suggest letting your primary care physician know this. 

 

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