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Dermatologist Wouldn't Due A Biopsy. :-@ (X Post...sorry Didn't Know There Was A Dh Board)
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NP said "well if the blood test were negative? then why test?" 

 

Hmmmmm how about you should biopsy a persistent skin rash in general before you go prescribing medication??? So then the doctor comes in and says she has two other patients with DH and my rash is not the areas that DH presents. Really...currently on face, neck, back, scalp...scars on arms and chest from past issues??? Not many other areas left???

 

Scolding me for scratching...that's why they aren't healing...use this medication for 14 days so the areas can heal. Ok...so I ask...this will heal the areas, but will it stop new spots from developing? "If new spots occur put medication on them and DON'T SCRATCH". Ok so if medication is so strong I can only use it for 14 days...what happens after that? 

 

It's like I'm asking for a full body scan or something radical and expensive???? Skin biopsy...in office procedure.

 

So do I try to find another doctor...I mean how do you know until you get there? I don't want to waste more time and $ going to doctors who will refuse to actually DX something...I say that again because why not biopsy to see WHAT it is...of course by her ignorance on the matter I figured she'd have not done the biopsy correctly anyway. 

 

OR do I just cut out gluten and see what happens? I haven't gone back to GI yet because I was going to see what the skin biopsy results were. He was certain it was "just IBS" but at least he ordered the Celiac panel which was negative. 

 

PCP in FL (I'm back in OH), is concerned with SED rate of 65, normal is under 20...she wants to know what my doctors here are saying is the reason...um yeah the doctors HERE suck and have not said anything about...she would like it checked again got see if it's still high. I told her I'd try...but doctors around here don't seem to like educated patients.

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
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