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Daughter's Labs Back

SMRI

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SMRI Collaborator
SMRI
Posted

She shows "negative' for Celiac but  she is IgA and IgG deficient. There is a disclaimer on the lab sheet, right under her total IgA saying "Celiac disease unlikely if patient is on a gluten containing diet and is IgA sufficient."   They ran :

 

Celiac Endomysial IgA -negative

 

Celiac Gliadin Ser IgA  --Value: 0.2 EU/mL

Reference Range: <6.1 EU/mL
 
Deamidated Celiac Gliadin Ser IgG
Value: <0.4 EU/mL
Reference Range: <4.9 EU/mL
 
Anti-Human Tissue Transglutaminase IgA ELISA (TTG
IgA)
Value: <0.1 U/mL
Reference Range: <10.3 U/mL
 
Celiac Total Serum IgA --36   reference range 44-441 mg/dl
 
So, is she or isn't she.  She has D or loose stools several times/day.  She has severe stomach pains after eating frequently which she thought was due to a meat allergy but was tested for that and those tests were negative.  It does not appear they did a full range of IgG testing but is that going to be accurate as well.  Two relatives blood/biopsy positive, me and a cousin.  We are waiting to hear back from my clinic to see if they want to see her or not.
 
 
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BlessedMommy Rising Star
BlessedMommy
Posted

If she is deficient in both IgA and IgG, can they do a biopsy? 

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

Hi SMRI,

 

She is IgA deficient, but they did not run a total IgG test for her based on what I'm reading.  Since she is IgA deficient, the rest of her IgA based tests are useless.  It's good that they ran the DGP IgG test although that is negative as well.  Based on these results, she doesn't appear to have it, but with the family history, I think more testing is definitely needed.  Can you see if you are able to request the TTG IgG version of the test?

 

 

 

She shows "negative' for Celiac but  she is IgA and IgG deficient. There is a disclaimer on the lab sheet, right under her total IgA saying "Celiac disease unlikely if patient is on a gluten containing diet and is IgA sufficient."   They ran :

 

Celiac Endomysial IgA -negative

 

Celiac Gliadin Ser IgA  --Value: 0.2 EU/mL

Reference Range: <6.1 EU/mL
 
Deamidated Celiac Gliadin Ser IgG
Value: <0.4 EU/mL
Reference Range: <4.9 EU/mL
 
Anti-Human Tissue Transglutaminase IgA ELISA (TTG
IgA)
Value: <0.1 U/mL
Reference Range: <10.3 U/mL
 
Celiac Total Serum IgA --36   reference range 44-441 mg/dl
 
So, is she or isn't she.  She has D or loose stools several times/day.  She has severe stomach pains after eating frequently which she thought was due to a meat allergy but was tested for that and those tests were negative.  It does not appear they did a full range of IgG testing but is that going to be accurate as well.  Two relatives blood/biopsy positive, me and a cousin.  We are waiting to hear back from my clinic to see if they want to see her or not.

 

SMRI Collaborator
SMRI
Posted
  • Author

I'll see what my doctor says.  They are supposed to be calling her back today I guess.  She is not a "kid"--not sure it should be on this board :D.  She is 20. :D .  We know she is IgG deficient from other health issues/testing she has had done.

BlessedMommy Rising Star
BlessedMommy
Posted

With the family history that you have, it would probably be a good idea to exhaust whatever testing options you have. Genetic, biopsy, etc.

SMRI Collaborator
SMRI
Posted
  • Author

I haven't heard from my daughter yet but I saw they added more testing to her appointment list so I'm guessing they want to see her.  They have her signed up to do more blood work, a urine and stool test and a carbohydrate breath test.  It doesn't look like they are planning an endoscope yet.  Probably going to see what the other tests say first.

nvsmom Community Regular
nvsmom
Posted

I agree that if her IgA and IgG are deficient, then the normal celiac tests won't work. Her only celiac testing option is the endoscopy  biopsy, and that isn't perfect either - it can miss up to 1 in 5 celiacs.

 

The breath test (SIBO) is often run for celiacs as it can produce the same symptoms.

 

Good luck to her.

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SMRI Collaborator
SMRI
Posted
  • Author

She got a call back and they still want to see her since she is symptomatic to either further investigate celiacs or other causes for her symptoms. 

SMRI Collaborator
SMRI
Posted
  • Author

They have added an endoscope for her not too.  She wasn't that thrilled about that but I told her it was pretty easy so no worries :D.  She's had other surgeries and this will be a breeze compared to those.

nvsmom Community Regular
nvsmom
Posted

They have added an endoscope for her not too.  She wasn't that thrilled about that but I told her it was pretty easy so no worries :D.  She's had other surgeries and this will be a breeze compared to those.

Make sure they take 6-8 samples from various intestinal locations.  I've heard many stories about doc who only take 2 or 3 samples, or even worse, doctors who skip the biopsies because they can't "see" any damage.  :blink:

 

Best wishes to her!

SMRI Collaborator
SMRI
Posted
  • Author

Make sure they take 6-8 samples from various intestinal locations.  I've heard many stories about doc who only take 2 or 3 samples, or even worse, doctors who skip the biopsies because they can't "see" any damage.  :blink:

 

Best wishes to her!

 

They will--that is standard at Mayo :D

SMRI Collaborator
SMRI
Posted
  • Author

Daughter had her endoscope today, results should be back later tonight or by her follow-up tomorrow.  Her gene pairs came back positive, but given I have them, not too surprising.  The dr's are pretty confident with her symptoms and family history she is Celiac, or at minimum IBS.  Her blood work is not going to be accurate because of her low IgA so that makes it harder.

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

glad testing is going well!!

SMRI Collaborator
SMRI
Posted
  • Author

Biopsy results are back and no evidence of Celiac....they took 8 samples in different parts so it's probably pretty accurate.  Her GI dr said that they will treat her as IBS and see how that goes since she does have a lot of symptoms.  If that doesn't help her, they want to see her back in a few months for more testing.  So, good that she doesn't have Celiac, not so good that she still has issues and we don't know why.  She has frequent D, 3-4 times/day, major stomach pains, can't eat beef or chicken, major headaches/migraines (but also has sinus issues).  

frieze Community Regular
frieze
Posted

has she had the IGG testing?

SMRI Collaborator
SMRI
Posted
  • Author

has she had the IGG testing?

 

Yes, she had everything.  It's a bit complicated because she is IgA and IgG deficient already.  The GI was going to call her today and discuss the next steps so I'm waiting for her to report in on that.  He mentioned some medications at her appointment and he also wants her to try a gluten-free diet to see if her symptoms lessen.  He was pretty confident she wasn't Celiac but thought possibly gluten sensitive.  

BlessedMommy Rising Star
BlessedMommy
Posted

It doesn't hurt to try gluten free and see if her symptoms improve, if all other testing options have been tried.

Cara in Boston Enthusiast
Cara in Boston
Posted

I was going to say the same thing.  When my son was in the process of being tested, he had conflicting blood tests and we had a long wait for the endoscopy.  HIs doctor planned on having him try the diet after the test even if it was negative.  She considers a patient's reaction to the diet to be yet another test that can inform the doctor of what is going on.  Turns out his biopsy was positive, so we knew for sure.

 

A negative biopsy just means damage was not found . . . NOT that you don't have celiac disease.

 

I would try the diet (be strict!  no cheating just because you don't have a formal diagnosis) for 3-6 months and see if there are any changes.  It certainly can't hurt.  I can't imagine being 20 and suffering through her symptoms on a regular basis.

 

Keep a journal (I just used a calendar) to track symptoms . . . the change can be gradual and you may not see a pattern if you don't write it all down.

Gemini Experienced
Gemini
Posted

Cara gave you great advice and I will go one step further.  IBS is not a diagnosis of anything...its called symptom treating.  When they cannot find what they are looking for, they lump people into this catergory and give them pills or whatever to suppress their symptoms.  Bad idea!!!!!!!!! 

 

 

A negative biopsy just means damage was not found . . . NOT that you don't have celiac disease.

This is about as true a statement as they come.  With your daughter being IgA and IgG deficient, blood work is out as a diagnostic tool and she is still pretty young for there to be advanced, findable damage.  But she does have Celiac genetics?  If so, then the doctor should not be ruling out celiac, at this point.  A dietary trial is the most useful tool when trying to figure it all out.  Good luck!

GottaSki Mentor
GottaSki
Posted

I agree with Cara and Gemini.

Three to six months completely gluten free to monitor symptom improvement/resolution is your next best step now that testing is complete.

My kids were seronegative except for the oldest had a single positive DGP at age 25. Two of three have been diagnosed with Celiac Disease, the third is gluten-free without official Dx. All had symptoms improve or completely resolve.

SMRI Collaborator
SMRI
Posted
  • Author

I suggested that she go on a gluten-free diet.  I don't think she will.  She is away at college so there is only so much I can do.  She will be home for 5 weeks for Christmas break so if nothing else, she will eat gluten-free then, not by choice :D.  

GottaSki Mentor
GottaSki
Posted

I suggested that she go on a gluten-free diet.  I don't think she will.  She is away at college so there is only so much I can do.  She will be home for 5 weeks for Christmas break so if nothing else, she will eat gluten-free then, not by choice :D.

Perhaps as your time gluten-free increases and she sees your health improve she will be more ready to give it a concerted try. My kids all decided on their own...couldn't force teens to remove gluten. Once they removed it on trial ... None were able to return to consumption.

Cara in Boston Enthusiast
Cara in Boston
Posted

Yeah, I have a young-adult relative who clearly should be gluten free yet she claims she couldn't possibly "live" that way.  When I looked back at how I "lived" before going gluten free (anxiety all the time, ) I only wish I had found out earlier (years earlier).  My social life was seriously hindered by me wanting to stay close to home "just in case")

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