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Casy

Labs in- all negative and very frustrated

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Hello! So I posted earlier this week about my long history of issues, and that I was awaiting results. Of course, by the time I got in to see the doc, the rash on my elbows was gone and I have no GI issues going on at all. At this point, I think I'm down to waiting for another rash to break out, and then getting it biopsied. My doctor says it looks auto-immune, but I have no idea if this is celiac at this point. Diet changes aren't even going to tell me a thing because my symptoms sometimes go completely away for months. The only reliable diet change is when I drink milk, my GI system doesn't like it... but I'm not lactose intolerant. Very frustrated at this point.

Labs are:

Complement C3                               109.5 mg/dL       (Ref Range 90-180)

Complement C4                22.4  mg/dL       (Ref Range      10-40)

C-Reactive Protein <0.3 mg/dL                   (Ref Range      0-0.6)

Tissue Transglutaminase Ab IgA <0.5 U/mL          Final INTERPRETATION(S): Reference for Celiac Analytes: NEGATIVE

Gliadin Ab IgA 1.0 U/mL

Endomysial Ab IgA:                          Negative

Rheumatoid Factor:                        NEG

ESR:                                                      9 mm/hr (Ref Range 0-20)

Thyrotropin Sensitive                     1.99 mcIU/mL (Range 0.34-4.94)

 

Comprehensive Metabolic Panel W/eGFR- All normal with exception of:

 Chloride 109 Higher Than Normal mmol/L (Ref Range 98-107)

Urea Nitrogen(BUN)/Creatinine 18.5 Higher Than Normal (Ref Range 8.00-18.00)

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Gliadin Ab IgA 1.0 U/mL I missed posting it... edited above. ;)

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I am sorry that you are diagnostic limboland.  I am sure you have been researching and know that you can be seronegative.  Getting a biopsy from the rash (there is a very specific way to biopsy so find a celiac-savvy Derm) can yield a celiac diagnosis.  Another option is to go gluten free.  Keep in mind that the antibodies in the skin can take a long time to go down.  It can flare even when you have not been exposed to gluten.  Read the DH section of the forum for more input.  

I wish you well.  

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23 minutes ago, cyclinglady said:

I am sorry that you are diagnostic limboland.  I am sure you have been researching and know that you can be seronegative.  Getting a biopsy from the rash (there is a very specific way to biopsy so find a celiac-savvy Derm) can yield a celiac diagnosis.  Another option is to go gluten free.  Keep in mind that the antibodies in the skin can take a long time to go down.  It can flare even when you have not been exposed to gluten.  Read the DH section of the forum for more input.  

I wish you well.  

Thanks. Very much limboland! I have read quite a bit on DH... so much so that I don't really know what else this could be. There aren't that many blistery itch rashes that present on both elbows that look like DH, aside from DH. :-/  At this point, I think I'm just going to try and see if there's any way for me to expedite getting in for a skin biopsy if the rash reoccurs. The DH goes into remission sometimes for a long time, though. I'm left wondering if everything goes into remission and only crops up every once in a while, is that worth going gluten free? Especially if I'm not 100% certain it's celiac. I mean, when I had a ton of mal-absorption symptoms I could see why I should do something, but since I cut out dairy, I have few to no GI symptoms, and only the scalp rash (and even that is gone right now) my hair sheds a lot, and I might get a short lived rash on my elbows for a week or so every 4-5 months. This last time, it was present for an entire month, so I decided I should try to get in to the dr. quickly and finally get to a root cause. Of course, it cleared up. I know some people with DH have no intestinal damage, and if that's the case, it's more of a nuisance than a threat to my health.

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They should test your immunoglobulins, IGA, IGE, IGM. I had a weird flare-up of dermatographic itching rashes and hives about five years ago, when all my problems really started (dermatographic means if you gently scratch - or sometimes even touch - the skin, it leaves a bright red streak. Like, you can write your name on your arm in lines of long red hives just from touching your own skin).  My IGE was very high, but they couldn't figure out what was causing it. My feet swelled up just from walking on them, it was sooo itchy and painful. I had to go on 2 weeks of prednisone. I've had itching and hives every day ever since, even though it's not as bad as the initial flare-up. It's still pretty dermatographic, too (I think my ESR and C-Reactive proteins at the time were normal, but I'm not sure). The human body is a strange, strange thing.

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On 6/1/2017 at 2:52 PM, Casy said:

Thanks. Very much limboland! I have read quite a bit on DH... so much so that I don't really know what else this could be. There aren't that many blistery itch rashes that present on both elbows that look like DH, aside from DH. :-/  At this point, I think I'm just going to try and see if there's any way for me to expedite getting in for a skin biopsy if the rash reoccurs. The DH goes into remission sometimes for a long time, though. I'm left wondering if everything goes into remission and only crops up every once in a while, is that worth going gluten free? Especially if I'm not 100% certain it's celiac. I mean, when I had a ton of mal-absorption symptoms I could see why I should do something, but since I cut out dairy, I have few to no GI symptoms, and only the scalp rash (and even that is gone right now) my hair sheds a lot, and I might get a short lived rash on my elbows for a week or so every 4-5 months. This last time, it was present for an entire month, so I decided I should try to get in to the dr. quickly and finally get to a root cause. Of course, it cleared up. I know some people with DH have no intestinal damage, and if that's the case, it's more of a nuisance than a threat to my health.

Casy,

I wanted to answer your question  "Very much limboland! I have read quite a bit on DH... so much so that I don't really know what else this could be."

It could be a little known disease today but people don't think to consider it today known as Pellagra.

Pellagra even means sour/rough skin where it is first diagnosed in Italy where the name comes to us from.

see this thread talks more about why this could be so.

It usually shows up in the bilateral (butterfly) pattern you mentioned on both elbows.

do a google image search or check out this relatively new school textbook on amazon that covers the  topic approx. 3 years old called "RED Madness" by Gail Jarrow.

My recent research caused me to stumble upon it.

They summarize the rashes that could be confused for DH today then known as Pellagra 75+ years ago (really almost 100 at it's peak  before WWI and no doctor today recognizes it anymore) as/by the "glove, boot, necklace, and butterfly" skin rashes people would get before they knew low B-3 was the cause and before Niaicinamide was discovered as the Pellagra Preventive Factor (as it was then called) before the third Vitamin discovered was named hence the name B-3.

Thiamine you guessed it B-1 was the first one discovered to prevent beri beri.

Since we enrich our breads doctor's do not recognize it role in skin rashes anymore and most Gluten Free breads are not required to be enriched with B-Vitamins the way most normal "enriched" breads are.

see this link that talks about why this is so.

https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html

I hope this is helpful.

celiac.com featured an article about this topic that you might find helpful.

https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html

good luck on your continued journey.

it might not help you but it helped Knitty Kitty on this board with her itching associated with her DH diagnosis and is worth more research on your part.

***this is not medical advice but it is worth considering as a differential diagnosis a valid method of ruling out other possible reasons for varied unknown (idiopathic)  causes for disease.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

posterboy by the grace of God,

 

 

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