Self Diagnosed...looking For Help

[cindylou7]

I recently had bloodwork that came back within normal range although the Dr. said the markers did show something??? I was only back on gluten for approx 3 weeks before testing though. Previous problems...dx nervous stomach in teens with sensitivity to milk, dx with IBS in my twenties, gallbladder disease with removal in 30's, previous CBC's show chronic anemia, leukocytopenia. Hysterectomy last year due to bloat and distention identified cysts and endomyosis. But bloat returned. Also dx with chronic shingles outbreaks but now I think it may be misdiagnosed DH. Bloat, diarrhea, skin rash disappear when gluten-free.

I have two big questions...

1) Should I keep fighting for a diagnosis?

2) Can DH be diagnosed while gluten-free or will I have to eat it again?

PS. My apologies for attempting to post on a seperate thread...new to this!

[beachbirdie]

I recently had bloodwork that came back within normal range although the Dr. said the markers did show something??? I was only back on gluten for approx 3 weeks before testing though. Previous problems...dx nervous stomach in teens with sensitivity to milk, dx with IBS in my twenties, gallbladder disease with removal in 30's, previous CBC's show chronic anemia, leukocytopenia. Hysterectomy last year due to bloat and distention identified cysts and endomyosis. But bloat returned. Also dx with chronic shingles outbreaks but now I think it may be misdiagnosed DH. Bloat, diarrhea, skin rash disappear when gluten-free.

I have two big questions...

1) Should I keep fighting for a diagnosis?

2) Can DH be diagnosed while gluten-free or will I have to eat it again?

PS. My apologies for attempting to post on a seperate thread...new to this!

Sorry to say, to get accurate results testing-wise you need to be eating gluten for a while. As for DH, I think the antibodies linger for a while after you stop eating gluten if it truly is DH...I've heard two or three weeks but I'm not sure on that one. And it needs to be done by a doc who knows what they're doing, some docs mistakenly biopsy the blisters but the biopsy needs to be done in the healthy skin right next to the blisters.

You definitely should get copies of your labs and post them. That's a good start. If you had not been eating gluten very long, it could skew the tests. How long were you OFF gluten at the time of testing?

You definitely have stuff going on that could be gluten related, and if you got better stopping gluten that tells you a lot.

Were any of your tests allergy tests?

If you don't need an "official" diagnosis, you don't need a doctor's permission to eat a gluten-free diet.

[mushroom]

Hi and welcome, cindylou. No apologies for starting a separate thread - it is the preferred way

Three weeks back on gluten is not long enough for a valid diagnosis. But get a copy of the results anyway and see what they say (and tell us, with the reference ranges). You symptoms sound spot on. How long had you been off gluten?

DH can only be diagnosed by biopsy if you have an active lesion, but sometimes it doesn't take much to activate one. And then the biopsy needs to be taken adjacent to the lesion, not on it.

[squirmingitch]

And you also need to be consuming gluten even for the dh biopsy. And there's a 40% (I think 40% -- or close to it) false neg. on the dh biopsy even when performed correctly.

Post your results like shroomie says.

And I echo beachbirdie --- you don't need anyone's permission to eat gluten free.

[cindylou7]

Thanks for your suggestions. I hate the fact that there is never an easy definitive answer. I also hate that people seem to accept your "strange diet" more readily with a dx even though I can identify hidden gluten in almost anything with a visible physical reaction. My stomach looks about 6 mths pregnant....not fun!

beachbirdie-I was gluten-free for the most part for about 6-8 mths before the test and I consumed gluten for 3 weeks prior to the test. I feel confident that I definitely have a problem with gluten, so I will follow the diet. And no, I havent had any allergy testing.

Mushroom & squirmingitch-where would i post the results? On this thread or a new one...

[mushroom]

Mushroom & squirmingitch-where would i post the results? On this thread or a new one...

Right here would be just fine -- keep the story in one book

[cindylou7]

Okay these are the results...

IgA quant ® 124 mg/dL

gliadin IgA 1 unit

gliadin IgG 2 unit

t IgA <2 U/mL

t IgG <2 U/mL

Endomysial AB neg

I dont understand what the Dr was talking about when he said that one of the tests showed "something" that could be an indicator. There were no range indicators...

other results (I dont even know what these tests are for or what they represent!)

gASCA 23

ACCA 59

ALCA 1

AMCA 26

[beachbirdie]

Okay these are the results...

IgA quant ® 124 mg/dL

gliadin IgA 1 unit

gliadin IgG 2 unit

t IgA <2 U/mL

t IgG <2 U/mL

Endomysial AB neg

I dont understand what the Dr was talking about when he said that one of the tests showed "something" that could be an indicator. There were no range indicators...

other results (I dont even know what these tests are for or what they represent!)

gASCA 23

ACCA 59

ALCA 1

AMCA 26

Well, without the ranges, it is hard to tell. The second set of numbers, with the unrecognizable names, are tests for antibodies found in Crohn's and other inflammatory bowel diseases. Maybe that's what your doctor meant when he said he saw "something".

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Perhaps it would be possible for you to contact your doctor's office and find out what the reference ranges are for the tests.

Your negative celiac tests could be that way because you were not eating enough gluten. Negative tests don't mean you don't have the disease, and if you have a strong positive response to the diet, it's a good indicator you shouldn't eat gluten!

The only way to try getting your blood to test positive is to eat lots of gluten for several months. Even then, some people still test negative. Some have negative biopsies.

This condition is really, really hard to get diagnosed, partly because the testing is not perfect, partly because it mimics so many other conditions.

[cindylou7]

Well, without the ranges, it is hard to tell. The second set of numbers, with the unrecognizable names, are tests for antibodies found in Crohn's and other inflammatory bowel diseases. Maybe that's what your doctor meant when he said he saw "something".

Open Original Shared Link

Perhaps it would be possible for you to contact your doctor's office and find out what the reference ranges are for the tests.

Your negative celiac tests could be that way because you were not eating enough gluten. Negative tests don't mean you don't have the disease, and if you have a strong positive response to the diet, it's a good indicator you shouldn't eat gluten!

The only way to try getting your blood to test positive is to eat lots of gluten for several months. Even then, some people still test negative. Some have negative biopsies.

This condition is really, really hard to get diagnosed, partly because the testing is not perfect, partly because it mimics so many other conditions.

Thank you so much! I think, know that I react to gluten...and it seems that this is such a difficult problem to diagnose that I will just continue to live gluten free. If I happen to have an outbreak of DH I will head to the dermatologist immediately and see if he thinks that he can make a diagnosis. If not...I will continue to choose gluten-free. I am so frustrated at the problems related to ingesting gluten that it's just not worth it.

I have friends and family who have witnessed the "effects" of gluten...I know that I am not crazy or a hypochondriac...but sometimes it feels like it! And it is sooooo aggravating to ask people if something is gluten-free and have them look at you like you are faking a disease

[MitziG]

You didn't post the normal ranges, but I am guessing what he saw is IGA deficiency. Most of the IGA labs I have seen have above 200 as normal- your reading of 124 would be low- IF THOSE ARE THE RANGES.

IGA deficiency is a common "red flag" for celiac. It also would render your other IGA tests invalid.