Any experiance with Dr. Thomas Lawley (Dermatology and immunology) in Atlanta GA?

[mytwomonkies]

We are contemplating taking DD2 to a dermatologist for her rash that we're pretty sure is dermatitis heperteformis. Apparently this doctor specializes in these kind of rashes but just wondering if anyone here has had experience with him. I have been to so many doctors that I've been unhappy with and we just had a bad experience with an allergist so I'm trying to be cautious about who we see. Thanks in advance!

[kjbrown92]

I thought DH was always associated with celiac disease, so maybe you'd be better off with a GI specialist. Though I guess if it is DH, the dermatologist would recognize it as such.

[nanamar]

I don't have any experience with that doctor, but I can recommend Dr. Goldberg. He is great and focuses on finding the root of the problem instead of trying to just eliminate the symptoms. Hope it helps!

http://www.goldbergclinic.com/

[mytwomonkies]

Kathy, you're right it is associated with celiac disease. We have suspected celiac with both our girls, DD1 tested negative but is a different child on a gluten and dairy free diet and the GI didn't see it necessary to test DD2 but she is also a different child on a gluten free diet (among avoiding many other things).

Nadia, we are going to hold off on the derm for now but thank you so much for the info! I did an iodine test with her and she reacted to that so I'm pretty positive it is DH, if she did get a skin biopsy there's a chance of false negative since she's on a gluten free diet.

I'm just going with my gut here and saying it's a good chance they both have celiac, they both have the genetic factor as do I and symptoms. Getting an official diagnosis is extremely tough, especially with little ones, and there's really no reason we need one right now except for the skeptical family members :p

Thanks for the replies!! :)

[scsigrl]

So when they were ON gluten they didn't have high ttG levels?

Also, getting a DH dx is a Celiac dx.  I would rather do a skin biopsy over a scope any day!

[mytwomonkies]

Originally Posted by scsigrl 

So when they were ON gluten they didn't have high ttG levels?

Also, getting a DH dx is a Celiac dx.  I would rather do a skin biopsy over a scope any day!

We didn't really learn about celiac disease until they both had already been gluten free for a while, DD2 hadn't really had much gluten at all since I eliminated it when she was 2 months old and even after she started solids the only gluten she was getting would have either been cross contamination or hidden gluten. DD1 went through a 3 month gluten challenge per her GI's request and then tested negative on the celiac panel, so no high ttG levels. We were going to wait to do a gluten challenge with DD2 but it was impossible to keep her from DD1's food so we did the challenge with her too. When we took her to the GI he didn't feel it was necessary to test her since DD1 tested negative and we only have suspected celiac in our family, no one has been diagnosed.

Me and DD1 both did genetic testing and DD1 has both DQ8 and DQ1 and I have 2 copies of DQ8 so I know DD2 atleast has DQ8. I tested negative on the celiac panel and had an endoscopy which was negative for celiac but I had inflamation in both my stomach and esophagus. This though was also after me being gluten free for about a year and then doing a 3 month gluten challenge, and the GI only took 4 samples during endoscopy. So, after all that I'm still left with a question mark. There's definitely a possibility for false negatives given the gluten free time.

I was content to just call it non celiac gluten intolerance but then DD2 got this rash that has all the characteristics of DH and it was right after a gluten exposure, I also got hives and DH like bumps on my face and neck right after the exposure. If DD2 continues to get these rashes then we will probably seek out a good dermatologist.

Hopefully one day they will have a test for celiac that does not involve eating gluten! Until then we will just continue treating it as if that's what it is because that's the only way to eliminate our symptoms and it definitely won't hurt anything. :)

[scsigrl]

So how much gluten was your DD eating during the trial?  

I would think without an elevated ttG it would be classified as an intolerance at this point.  Not saying it won't turn into Celiac in the future and if you/they are suffering with gluten in your diet it makes sense to take it out.

I would think getting to the derm when you/your DD has a flair of what you think is DH would be the next best step.  You've had all the blood testing they can do from a GI and the allergist wouldn't be all that useful (IMO).

It would be nice to have a test like that!  I know they are working on some gluten blocking pills though and I would rather that over a new test!  A Mom can dream though ;)

[mytwomonkies]

They were eating as much as I could get them to eat, which was not easy. DD1 had her good and bad days, some days she just didn't want to eat much of anything at all. DD2 was even harder, it's like she knew it made her feel bad so she wouldn't eat it. It was even hard to get her to eat cookies much less a piece of bread. One or two bites and she was done. Super picky eaters on a gluten diet, but when on a gluten free diet they will eat pretty much anything you throw at them :)

I'm content to call it "gluten intolerance" since there's no "official" diagnosis. It's just hard to completely rule it out since the blood tests are only about 70% accurate at best and it's even harder to get a diagnosis with little ones. ttG levels are dependant upon the degree of villi damage so you can have little damage and test negative. When you go gluten free for a while your body heals and it takes different people different amounts of time to re-damage their intestines enough for it to show up on testing. It can take days, weeks, months, or even years. Then you also have to factor in seronegatives. And endoscopy's have a high rate of false negatives too since damage can be patchy so that diagnosis is really dependent upon a GI who knows to take enough biopsies and really knows what he's looking for.

I'm sure you already know all this since you deal with celiac yourself, just trying to prove that it's something I'm well researched in and definitely don't take it lightly :p

There's 3 factors you need in order to have celiac disease: genetics (which is debatable by some), an environmental trigger (can also be stress, virus, etc.), and a gluten filled diet. The first two you can't really change but you can change the last. If all I'm doing is preventing my girls, and myself, from developing celiac disease then I'm content with that.

I wish everyday that this was something we didn't have to deal with but I'm learning that we just have to accept it and learn how to manage it. The GI symptoms, sleep problems, mood swings, anxiety, rashes that all resolve on a STRICT gluten free diet is all enough for me! :)

[mytwomonkies]

Oh, the only reason for wanting to maybe seek out a good allergist is because of all the other food issues DD2 is having which definitely gets overwhelming sometimes. We had them pretty well under control before the gluten challenge but ever since then she hasn't been tolerating things she was able to tolerate before. I'm suspecting leaky gut so we're working on that. I think we're holding off on any more specialists for the time being unless we just can't get it figured out. Thanks for all your responses! :)

[scsigrl]

If it's been more of a problem since the gluten trial, have you tried a good strong probiotic?  I know with DS, even after his allergens and gluten were gone his GI issues weren't better till we satarted him on an awesome probiotic.  It made a world of difference!

Also, the ttG blood testing is MUCH more accurate than that.  They are suspecting it is actually more like 85-90% now and improving all the time.  Also, the ttG results don't depend of the amount of villi damage at all, it is a combination of a bunch of different factors and levels of anti-bodies in the blood.  DS had ttg's in the 200 levels and his biopsy was -/inconclusive.   He does have a Celiac dx now because after removing gluten his ttG's are returning to normal.  It is actually just as common to have an inconclusive/- biopsy and HAVE Celiac(15%) than the ttG's being incorrect.   As for 3 factors to have Celiac, it is actually 4.  The fourth being a leaky gut.  If your gut isn't leaking, the gliadin can't get through.

[mytwomonkies]

We'll probably have to just agree to disagree on this one :) It really just depends on what you're reading and who you're listening to. NIH has a more conservative estimate of false negatives at 20%, whereas you'll find some other medical professionals who estimate it to be much higher. Now as far as specificity is concerned it is pretty high with the ttG and that's why they use it. False positives are not very common. The only reason I didn't mention the leaky gut is because, though I've heard people say that, I have yet to read it in literature. If you have any links on that I would love to check em out!

[scsigrl]

Originally Posted by mytwomonkies The only reason I didn't mention the leaky gut is because, though I've heard people say that, I have yet to read it in literature. If you have any links on that I would love to check em out!

I am sure it is out there.  My specifics come from a presentation a few months ago with Dr. Fasano who is the IT guy in the US with Celiac research.  I know it was in one of the articles he's published but I can't think of which one.  If I find it (I have a paper copy somewhere) I will try and find it on line and link to it.

Which statement do you disagree with?  The stats of testing reliability?  I would be just as interested to read your sources on that.

[mytwomonkies]

There was a study I read not long ago and I thought I had it bookmarked, if I find it I'll post it. It was the one that mentioned 20% false negatives.

There's several articles I had that talked about seronegatives, I found this one to be a good resource. Talks about how tTG levels correlate to villi damage http://www.celiacdiseasecenter.columbia.edu/C_Doctors/C05-Testing.htm

This is one I find to be another good resource and states, "Young children may not make the some of the “anti-self” antibodies, as it takes a somewhat mature immune system to make them. So in a young child, antiendomysial antibody, or the TTG antibody, can have false negative results."  http://americanceliac.org/celiac-disease/diagnosis/

I'm definitely familiar with Dr. Fasano and will look into that, thanks for the info :) I've googled it before and never really found much info.

Anyways, I didn't mean to get a debate going. It's just frustrating sometimes when you can't get the answers you need; either the doctor's aren't knowledgeable enough or the tests aren't accurate enough. I would absolutely LOVE to believe that my kids don't or won't have celiac disease, but it seems like everytime I try to tell my self it's not celiac another flag pops up pointing to celiac disease. Not to mention there's all kinds of type 1 diabetes, autoimmune thyroid disease, rheumatoid arthritis, etc in my family. For now I'm just happy to know how to manage most of my girlie's symptoms, and hopefully one day they will have more of a definitive way of testing.

[scsigrl]

Ya know, I wasn't even thinking of the testing for the smaller people :)  Yes, there are issues with the tests for them!  

Also, I hear what you mean about the testing and wanting answers!  We didn't get a dx for over a year even WITH a 12 pt. biopsy.  Immunology is such a tough one all the way around.  We don't know much so when dealing with autoimmune stuff...well it just sucks :(  

Again, I will try to find the article from Dr. Fasano.  Like I said I *think* I have it up in my medical research binder but well, it isn't exactly well organized ;)

[scsigrl]

I will totally admit I didn't watch this whole thing but here is an interview with Dr. Fasano:

http://www.glutenfreesociety.org/gluten-free-society-blog/dr-osborne-1-on-1-with-dr-fasano-on-gluten-sensitivity/

Here's another little thing:

http://www.healthy-eating-politics.com/leaky-gut.html

I KNOW I have an article somewhere.  Just have to find it!

[mytwomonkies]

Awesome, thank you! I did watch the gluten free society one the other night after you mentioned his name. I will check the other article out too :)

[scsigrl]

:) I am just glad that "they" are starting to see how much gut permeability can be an issue.  I wonder a lot about the use of antibiotics (both for humans AND in the foods we are eating).  My DS had been on antibiotics twice in his life and I wonder if I had given him a probiotic at that time it could have helped or put off the development of his Celiac. (Though I admit, it is almost easier now because he has just always been GF in his head so he doesn't question or want things he can't have cause he's never had them anyway!)

[mytwomonkies]

Originally Posted by scsigrl 

:) I am just glad that "they" are starting to see how much gut permeability can be an issue.  I wonder a lot about the use of antibiotics (both for humans AND in the foods we are eating).  My DS had been on antibiotics twice in his life and I wonder if I had given him a probiotic at that time it could have helped or put off the development of his Celiac. (Though I admit, it is almost easier now because he has just always been GF in his head so he doesn't question or want things he can't have cause he's never had them anyway!)

Sorry, I just now saw your post :p I've often wondered about antibiotics too. Both my girls were on antibiotics at birth, and both had antibiotics another time for strep throat. I've never really been a fan of antibiotics but until now I never really realized the impact that maybe they could have. I guess hindsite is 20/20 :p