[Crimson]

Ok. So, had enough of a break out to get the skin biopsy done. Now ten days of waiting. But I'm just sooooo happy to have this part of it done!

[nasalady]

Crimson, on Sep 8 2009, 02:11 PM, said:

Ok. So, had enough of a break out to get the skin biopsy done. Now ten days of waiting. But I'm just sooooo happy to have this part of it done!

That's wonderful! Please keep us posted!

JoAnn

[Crimson]

Will do!

I'm relieved and ecstatic again today. I made an appointment with a family doctor and they listened to me and requested all the tests. She even gave me a price cut for "doing her job" and coming in with all the info that she needed! *I have no insurance, so I pay out of pocket*

She wants me to get the blood tests and given my reaction to eating gluten, go back to gluten free as soon as the tests are done. *which is tomorrow*

Between the skin biopsy for DH and blood tests, I should have a diagnosis.

I still can't believe that.

I'm in shock. Shocked that the doctor listened to me and understood all that I had to say. She looked up and printed of this 16 page report from the National Institute of Health to help her order tests and such.
I'm just shocked.

The receptionist was great. The student doctor was great and the doctor was great. I'm quite happy to say the least.

I've gotta throw in a thank you to every one here. With out the info found here, this would not have been so easy for me.

Can't wait to get back to Gluten Free!

Cheers!

[jerseyangel]

Wow---that's fantastic. Please do keep us posted

[Crimson]

So. I'm back on the gluten-free diet since Friday.

I feel SO much better! I still have some blisters popping up here and there, random joint pain and my belly is still giving me hell for what I've done to it the past three weeks. But, I am certainly feeling better! Headaches have lessened too. I'm still napping here and there.

BUT I've managed to clean my house and catch up with many things that I've let slip due to feeling so bad for nearly a month. *house work was really piling up on me*

My doctor called to let me know that the blood test for vitamin and blood levels are normal! I was very glad to hear that. So, I've been doing very well for my body in the 16 months of being gluten free. Three weeks of gluten did not disturb my vitamin levels.
Of course, I do take liquid vitamins here and there to make sure that I absorb them properly. So, I'm sure that has a lot to do with that.
I get plenty of sunshine in the summer too. So, my vitamin D is perfect right now. Though, in the winter, I do also supplement vit. D too.

I'm very nervous about the apt. with dermatologist on Fri. I will be getting my results for skin biopsy. So, I'm just trying to keep busy and distracted until then. Then the Celiac blood panel results should be in w/in a week after that. I just hope this goes well. The results come back indicating DH/Celiac. And I can have my diagnosis along with more help on some of my issues that have not yet cleared up on gluten-free diet.

I'm all mania and worry right now. Gluten really seems to put my emotions through the wringer. I'm trying to stay calm. Just ride this out until it's done. Breathe...

[Crimson]

Ok. So, here's the update...
Frustrating. haha

Biopsy was inconclusive. I suppose I will wait and see if I get anything that can't be misconstrued as anything but DH. I certainly had that with the original blisters. But, they were already opened by the time I got to the derm. So, I paid out a ton of money for them to tell me that I have dermatitis.
I'm a bit frustrated with them.

My vitamin levels and blood work all came back normal.
I was eating gluten for three weeks. Obviously not enough.
Can't. do. it. again.
I simply do not have it in me to eat gluten again.
I'm still working it out of my system. Massive headaches and joint pain.
My skin is going nuts with acne. And I'm all over the place emotionally. Mood swings a bits of depression. *I think I hate that the most* My energy levels are also all over the place. One minute I'm hyper, the next I'm ready for a nap.
I'm still waiting for my stomach to calm down. Pepto bismol gives me heartburn. o_O

I'm still not sure WHY I did this all to myself....

I was looking into the gene thing again. And found that the specific genes that I have DO equate to a predisposition for celiac, just they are a bit more rare.
The DQ2.2 and DQ7 apparently pair together to do exactly what the DQ2.5 does by itself.
At least, that is my understanding.

There's apparently a bit of a link with DQ7 and neurological issues with gluten...? correct me if I'm wrong.
I'm just getting the hang of some of this with the gene analysis.

I'd still like to be tested for other food allergies. But, I think I'll go with the old elimination diet. Much cheaper.

Cheers!

[ChemistMama]

Crimson, on Oct 3 2009, 08:26 AM, said:

Ok. So, here's the update...
Frustrating. haha

Biopsy was inconclusive. I suppose I will wait and see if I get anything that can't be misconstrued as anything but DH. I certainly had that with the original blisters. But, they were already opened by the time I got to the derm. So, I paid out a ton of money for them to tell me that I have dermatitis.
I'm a bit frustrated with them.

Crimson, my biopsies were negative, too. I had three done, two near lesions and one of a lesion. Did they make sure to get skin near a lesion? You're not supposed to get the sample from an active lesion.

Link to scientific paper abstract about DH

Did you try the iodine test yet? The old fashioned way to test for DH was to soak a bandaid with iodine and put it against your skin for several hours to overnight. If you have DH, the skin exposed to the iodine will itch like crazy and eventually blister. I tried it myself and hooo boy was it itchy!!

GOod luck!

[Crimson]

Thank you for that link! I appreciate it. The biopsy that they did was ON the lesion and not beside it. I don't know of any other dermatologists in the area though.
This one is a 45 min drive.
Anyway, iodine patch test done and the pics are in my other post. You can see them and the patch test that I did on my husband as well. Same amount of time, TOTALLY different outcome.

[nasalady]

Crimson, on Oct 4 2009, 02:01 PM, said:

Thank you for that link! I appreciate it. The biopsy that they did was ON the lesion and not beside it. I don't know of any other dermatologists in the area though.
This one is a 45 min drive.
Anyway, iodine patch test done and the pics are in my other post. You can see them and the patch test that I did on my husband as well. Same amount of time, TOTALLY different outcome.

Crimson, I can understand your frustration and disappointment! But your iodine patch test was absolutely convincing to me....and that used to be the standard test! So I think you do have your answer....

Also, you're correct about DQ7 and DQ2.2 working together to make a DQ2.5; here's a link to a thread from about a year ago which has that information:

http://www.celiac.co...showtopic=52131

In any case, I'm glad you're not going back on gluten!

Take care,
JoAnn

[Crimson]

The patch test is what made me get the appointment for the dermatologist.
Unfortunately, he called it a chemical burn. oi... just oi....
It's all good. I have a few articles printed off just in case I do get an opportunity to try try again. Not sure if I'd do it. But it's nice to know they're there.

Thank you very much for yet another link.
I've been all over the web trying to deepen my understanding of all of this.
I appreciate all the links and extra information you and others have given me access too.
I think it takes time for all of this to settle in to the brain for me.

I'm pretty glad that I won't be going on gluten again too!

Cheers!

[Crimson]

Ok, Blood tests: Finally got a copy... sheesh

IgA <1.2 Range : 0.0-10.0
IgG <1.2 Range : 0.0-10.0

She didn't run the total IgA

My LYMPH are low
WBC high
MCH high *not sure what the hay this one is supposed to be for*

If I'm not mistaken, IgA and IgG ARE lymphocytes the LMPH that are low.
I'm guessing this would indicate and IgA deficiency.
I have an appointment in the morning. I'll see if she'll look into it a bit further.