SiandAshs Mom

YVW!

A question. Does anyone in your family have celiac disease? I haven't been on the other forums in a while so don't know your situation. So I'm wondering what made you think it might be dh? 

 

There are many rashes & skin problems associated with celiac disease. If at some point you suspect again that he really does have dh, then come back here before you have him tested so you can get the right info. to walk into the doc with so you can make sure he gets tested the right way.

Ah! I had a long post with more info but it seemed to disappear (all my posts need mod approval since I'm new so maybe that's why). My grandmother has always said she has celiac disease but I don't think she was ever actually dx'd. My grandmother, my brother and I have all dealt with GI troubles (cramping, diarrhea), snoring/apnea, fatigue and depression (and I recently found out I am really low in iron). My doctor recently sent me for celiac blood tests - they all came back negative. My son has not been tested for celiac - he has had reflux since he was a baby (repeatedly on prilosec, I think it was) and has bad allergies to dogs/cats (and hay fever to a lesser extent). I'm probably just being an over-concerned parent but the skin issues, in my opinion, signal internal issues. Anyway, it just sucks feeling like something's wrong but I never seem to make any progress (and I meet a lot of resistance from family too)! I appreciate your help/advice though. There's so much knowledge here - it's just awesome!

DH is itchy, itchy, itchy!!!!! He would be clawing himself raw. And photos can be tricky..... It doesn't really look like dh. It could be psoriasis of some kind. I wouldn't push for a biopsy for dh for this reason ~~ If he does it & it's negative then you'll play hell getting him to biopsy it again for dh at a later date should the need arise.

Thanks squirmingitch. That's what I thought. I'll take him in to the doctor anyway, just to see what he says, but I won't push for a biopsy. I appreciate your thoughts!

Here's some more info. My son has not been diagnosed with celiac - he has allergies (dogs and cats and hay fever to a lesser extent) and has struggled with reflux since he was a baby. I believe either celiac or ncgs is in our family. My grandmother has always said she had celiac disease though I don't think she was officially dx'd. My grandmother, my brother and myself all deal with gi issues, apnea/snoring, and skin issues (eczema, keratosis pilaris) as well as fatigue and depression (oh and I am really low in iron as well). I recently had celiac blood work done which all came back negative. Obviously celiac/food sensitivities are on my brain and there is a strong possibility that I am simply being an over-concerned parent but skin issues seem to signal internal issues. I'm just trying to figure out what to do next... I can almost guarantee the doctor will give me some cream to put on his elbows and send us on our way. That just doesn't really get to the underlying issues IMHO. I'd love to hear some of your opinions (even if it's that I'm being unreasonable!). Thanks

Hello all. I know that you aren't able to diagnose my son but I would love to hear your thoughts. My 6 year old son has a rash on both of his elbows (one side is worse than the other) and I want to be armed with as much info as possible before we go see the doctor. Do you think it's possible that this is DH? He says it's itchy sometimes but not all the time so that leads me to believe that it isn't. I'll have the doctor look at it anyway but do you think it's worth asking for a biopsy? Just not sure what to do next (if anything at all!). Thanks for your input

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If you do go for a colonoscopy, you might want to request an endoscopic biopsy be done at the same time. There are a few members around here whose enlightened doctors did an endoscope at the same time as an exploratory colonoscopy, and they were surprised by a positive endoscopic biopsy. Celiac blood work isn't always positive - I believe there is up to a 25% false negative testing rate.

 

Good luck! 

Thanks - that's good advice. If I'm going to go through the hassle of a colonoscopy I may as well have the endoscopy done too! Thankfully my doctor is usually willing to work with me on things so I'm sure he'd agree

I have to use Labcorp for my insurance and a complete celiac panel for them consists of the tests I listed above.  On the other hand Quest Diagnostics says DGP are still considered experimental.   come to a consensus people    what lab are you having them done through?  is labcorp an option for you?

 

check out page 12 of the report for specificity and sensitivity for DGP tests.  

 

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others on the board say that DGP picks up early celiac.  my biopsy was negative, but my DGP igg was double the normal amount of antibodies, and since damage wasn't found on my biopsy, I've decided early celiac it is 

 

here are some other threads I've started that deal more with DGP:

https://www.celiac.com/forums/topic/100245-other-known-causes-of-high-dgp-igg-besides-celiac/

https://www.celiac.com/forums/topic/101686-chicago-celiac-center-response-regarding-dgp-and-ttg/

 

the chicago thread is contradictory...Chicago response, "if it was only gluten intolerance (now we call it "non-celiac gluten sensitivity") DGP shouldn't be present. We are not aware of any research showing that a high DGP score with a negative ttG may represent early-onset celiac. A negative TTG and a negative biopsy essentialy do rule out celiac. Why is DGP-IgG elevated then? I don't know: but no test is - if taken alone - 100% diagnostic of anything in medicine."

 

I stand by early celiac no matter what they say 

I'm actually in Alberta, Canada so Labcorp is not a possibility. I went in to the lab today (our lab is Dynalife) and they actually phoned the provincial lab to see if there was a different code for it or something and they did say the test was available... the woman who drew my blood said it came up as amidated as opposed to deamidated. I'm kind of thinking they didn't run the correct test but we'll see. At least they tried! Whatever my tests results are, I am going to go gluten free. If I feel better off gluten then I know I will need to stay off of it. I was just hoping that there would be a clear medical diagnosis because it would make it easier to explain to family. I think my kids have issues with gluten as well so it would be easier to have a positive result as opposed to the vague "gluten intolerance" diagnosis that makes people roll their eyes. But hey, I'll do what I have to do to keep my kids and myself happy whatever the case . I appreciate the help!

So my doctor sent me for all the tests that were suggested here - wonderful that he was so willing to check it all out! There was a problem at the lab though when I went to get blood drawn. They said that the DGP tests didn't come up in the system so they couldn't run those. How important are these tests in diagnosing? Thanks so much!

welcome 

 

you should ask for a complete celiac panel which consists of:

 

DGP iga/igg

TTG iga (already done)

TTG igG

EMA

Total iga serum (already done)

 

you produce enough iga, so that makes the result valid.  i've seen it quite a few times on here that IBS really stands for "I Be Stumped" 

 

ask for the complete panel because some people have only been diagnosed with one or two of the above tests as positive.  Celiac is diagnosed through an endoscopy and not a colonoscopy. At least 6 samples should be taken during the endoscopy.  do not go gluten free until all testing is complete.

 

hope this helps!

Thanks so much for your reply! Yeah, my doctor says that since I am clearly not celiac, a colonoscopy is the next test to figure out the cause of the chronic diarrhea. I will definitely ask for the complete panel you posted - I still have a feeling that gluten may be the issue and I'd rather run a few more blood tests before I get a (probably pointless) colonoscopy. I'm sure I'll be back after my results are in to get advice then as well. Thanks again for responding!

Hi all. I am new to this forum but am really excited to glean your knowledge! My doctor recently sent me for blood tests for celiac (chronic diarrhea since childhood, fatigue, depression, iron-deficiency anemia) and he says the results are negative. I was wondering if I could get your opinions as to what these results actually mean before I decide what to do next. Here are my results (I'm in Canada, if that makes a difference...):

IgA 1.32 g/L  RefRange: (0.70-4.00)

Anti-transglutaminase IgA    <1.0  U/mL   

(<7.0 is negative, 7.0-10.0 is weak positive, >10.0 is positive)

So I believe the first number is the total serum IgA, right? I am not deficient according to this. And the next number is the tTG-IgA, right? Again, big fat zero, or close to. So I take it to mean that it is a pretty clear negative for celiac. Does that seem to fit with the knowledge of all you here? My doctor says the next testing we could do is colonoscopy but he says he's doubtful anything will show up. Any advice on steps I can take to gain some more health? I feel like the medical community has kind of written me off (my previous doctor gave me a diagnosis of IBS) since tests are negative... thanks for your input and opinions!

Erin