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squirmingitch

Member Since 01 Nov 2011
Offline Last Active Private
*****

Posts I've Made

In Topic: Help With Test Results

Yesterday, 08:58 AM

nvsmom & others are much better @ interpreting bloods than I am so I will let them weigh in on that. Although her "regular" bloods look normal with the exception of monocytes which are white blood cells are a tiny bit low. What that means - I don't know.

I can say that a full celiac panel is not in those reports.

Does she have any dry places on her lips? Or lesions or rash? I did find these links that talk about swelling of the lips with eczema:

http://ezinearticles...Swell&id=550170

http://www.simple-re...get-rid-of.html

 

So from what I'm reading the derm is convinced it's eczema & refuses to consider or rule out anything else. If it's dh she will not be able to get it "under control". I really do NOT understand WHY they REFUSE to do a dh biopsy if ONLY to RULE IT OUT.

 

I went back to your first post on here to review & You said :

"We left the doctors with him saying she needed to do a two week gluten free challenge to notice any effects.  Within 24 hours she had gone from 4-6 toilet stops a day to 2.  However she had severe stomach cramp on gluten free.  Could this be because her gut is not used to working efficiently?"

So when she went gluten free, in 2 days her toilet stops went from 4-6 down to 2. That, plus the "failure to thrive" when she was little & the tingling hands & feet & the muscle cramps & spasms. It's ENOUGH to be very suspect of celiac & that means her rash is suspect of dh.

I STILL contend she needs to have a dh biopsy. If it is done & done right & she turns up negative then she is negative and then you will have ruled that out & can look for other answers.

I just feel like this is wasting time while she is suffering (and you are). And I will also say that i think it's quite possible she has more than one thing going on with her skin so more than 1 biopsy should be done.


In Topic: Help With Test Results

Yesterday, 05:18 AM

I'm keeping my fingers crossed that today is a GOOD day with the derm actually knowing their business and you getting some answers & not coming home frustrated.


In Topic: Too Fat For Dh?

03 July 2015 - 11:37 AM

You're welcome! I wish I could find references to derms like that all the time -- just got lucky that the Houston chapter had that on their website. 

 

Do you know what labs the GI did? You've probably done enough research by now to know that half the time (or more) GI's don't even know what the full celiac blood panel consists of. I'm betting he didn't do the complete blood workup. Even if he did celiac can present at any time in life. it might not be here 1 year & then it is the next. And it's possible he did do the right blood work but you're 1 of the 60% who test false negative on it b/c the dh was sitting under there waiting to rear it's ugly head.

 

DO try NOT to scratch before you go see the derm. The patterning the lab will be looking for is VERY easily destroyed by scratching. If you have to put multiple layers of padding over that area to keep from scratching it then do so. Also if you can catch any blisters on camera (I know, hard when they're small) so you can show her then that would be good too.


In Topic: Too Fat For Dh?

03 July 2015 - 09:35 AM

Oh boy! You have them on your elbows & knees & now he's not satisfied but wants them to also be on your buttocks & hairline. What an ass! If I had a nickel for every time someone said their derm said it couldn't be dh b/c it was NOT on their elbows & knees I would be a very wealthy woman. Find a new derm. Check out this link -- there is a derm listed there, Sylvia Hsu, M.D., Dermatologist, Baylor College of Medicine. http://www.houstonceliacs.org

Yes, I would say the biopsy could be taken from anywhere a new crop pops up where you haven't been using the cream. :)

It looks like you've been doing your research & you know the things you should know. Keep eating gluten if you want a dyed in the wool dx. Also, you could go to your primary care doc & ask for a full celiac panel -- google on the site & you will come up with the proper, full, current panel. You know there's a 60% chance you'll come up negative but maybe you'll be one of the lucky ones who comes positive on the bloods. 

Of course overweight people can have celiac -- just ask half or maybe more of the people who are dx'd on this site.

And the idiot derm you went to doesn't know that  a whole lot of us with dh have fewer, milder gi issues. Still shaking my head over that ass. 

Your hashi's is right in line with celiac. 

Get tested. 

Pleas let us know what happens & if the derm you see knows their stuff please come back & post their info. in the Doctors forum here:

http://www.celiac.co...isease-doctors/

so others can access a good derm in Houston in future.


In Topic: Help With Test Results

02 July 2015 - 06:51 PM

I was thinking that you should start keeping a food log & write down anything & everything that passes through your daughters lips, that would include medications both prescription & OTC. This is so you can track what might be giving her additional problems. Also write down any reactions she seems to have -- just take notes of anything that seems odd. It's a lot of work but many times it's the only way to figure out the problem item. It wouldn't be a bad idea either to keep a log of anytime any topical products are changed such as a new laundry detergent or lotion & things like that. 


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