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Iga, Test Reults And Junk

KMMO320

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KMMO320 Contributor
KMMO320
Posted

I finally got my copies of my results from the GI. I read the biopsy report she wrote and it sounds like she went in specifically looking for ulcers. She wrote that i went in for abdominal pain..which I did NOT! I specifically told her I was there because of my nutrient/vitamin deficiencies and other head stuff that I felt was food related. I had chronic D which CAUSED abdominal cramping, but the cramping only lasted as long as the D..and then went away. I was way more concerned with the migraines, foggy head, sinus pain, etc..

She said she took biopsies of the duodenal bulb. but dont they usually go a little further down? She said the descending duodenum "appeared" to be normal and biopsies were not necessary.

Then I got my genetic testing and it said I was DQ2-, DQ8- which was Extremely Low Risk..

Then the rest of my blood work..it said Celiac unlikely if IgA level is Sufficient. So she CIRCLED where it said UNLIKELY..but Guess what? I AM IgA DEFICIENT!! And I told her that and the bloodwork says that.

my total IgA is 6.7 and the norm is 44-441.

SO..I made an appointment with the Celiac Center at Beth Israel Hosp here in Boston. If nothing else, I will have peace of mind, and if it really IS NOT Celiac then it must be an intolerance and I will just know. I go July 16th, was surprised I got in so fast.

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roxieb73 Contributor
roxieb73
Posted

DO NOT EVER GO BACK TO THAT DOCTOR!!! OMG what a quack! Ok sorry but what you have written makes me soo mad! You have the 2 classic DQ2 and DQ8? Those ARE the celiac genes! How is that low risk? Plus IGA deficient? You need to see a new doctor ASAP. I am glad you have an appt somewhere where they know what they are doing. BIG BIG Hugs!

KMMO320 Contributor
KMMO320
Posted
  • Author

DO NOT EVER GO BACK TO THAT DOCTOR!!! OMG what a quack! Ok sorry but what you have written makes me soo mad! You have the 2 classic DQ2 and DQ8? Those ARE the celiac genes! How is that low risk? Plus IGA deficient? You need to see a new doctor ASAP. I am glad you have an appt somewhere where they know what they are doing. BIG BIG Hugs!

no no..DQ2- and DQ8-..the minus signs are for negative...its from the Prometheus labs...

At the very least, I feel I have an intolerance and I just want to know that I am not imagining things. but I am IgA deficient and I feel that that means something. I am also mad the original GI for not even TRYING to help me find out WHY I am so sick, rather than tell me what is NOT causing it. know what I mean? She hands me some prilosec and says, see me in 3 months.

She tells me:

-my Vitamin D is DANGEROUSLY low..and hands me some supplements

-I have several ulcers and acid reflux, here are some pills

-Iron is VERY LOW..take some vitamins

-B12 is "ok" maybe take some supplements

-IgA is defficient

-I have "IBS"

-I have hypothyroidism...take your pills

OK BUT WHAT IS CAUSING ALL THIS??????????

roxieb73 Contributor
roxieb73
Posted

no no..DQ2- and DQ8-..the minus signs are for negative...its from the Prometheus labs...

At the very least, I feel I have an intolerance and I just want to know that I am not imagining things. but I am IgA deficient and I feel that that means something. I am also mad the original GI for not even TRYING to help me find out WHY I am so sick, rather than tell me what is NOT causing it. know what I mean? She hands me some prilosec and says, see me in 3 months.

She tells me:

-my Vitamin D is DANGEROUSLY low..and hands me some supplements

-I have several ulcers and acid reflux, here are some pills

-Iron is VERY LOW..take some vitamins

-B12 is "ok" maybe take some supplements

-IgA is defficient

-I have "IBS"

-I have hypothyroidism...take your pills

OK BUT WHAT IS CAUSING ALL THIS??????????

Ok I misunderstood. Can you get copies of your labs to see what they say? I would be interested to know what genes you do have. There are other genes that cause Gluten intolerance. I am double DQ1 and have most of the symptoms you talk about. Including the dangerously low vitamin d. Hopefully this new place will be able to help you figure it all out.

KMMO320 Contributor
KMMO320
Posted
  • Author

Yep...my DQ Genotype says:

DQ2-, DQ8- (with the negative signs after them) and next to that it says Risk: Extremely LOW.

I just love the part though, that SAYS right on the serology report that the test is invalid if IgA is not sufficient and she CIRCLED where it says "Celiac Unlikely"

Doesnt the fact that its tells you its not valid tell you something??

I just want a Dr to at least try everything..dont do it half way...what is the other blood test that they should do if someone is IgA deficient? I am trying to look to see if I had that done....

Also, with the biopsy..to me, it doesnt sound like she went very far in my small intestine..it sounds like she saw the ulcers...and said AHA! theres the problem!

Skylark Collaborator
Skylark
Posted

You are in a difficult position. The current two tests usually used used are TTG IgG and deamidated gliadin IgG. Some doctors also order anti-endomysial IgG (called EMA sometimes), which is an older version of TTG but not all labs run it. You may get some resistance, particularly from this ignorant-sounding doctor because many doctors don't realize that you can be celiac with a negative genetic test.

I think it's more likely that you are non-celiac gluten intolerant. Low IgA is a risk factor for celiac but the risk of celiac without the genes is fairly low compared to the risk of gluten intolerance. Gluten intolerance and the resulting inflammation can cause all the problems you've listed including the thyroid trouble.

So, once you've got your IgG tests, give the diet a good strict try.

squirmingitch Veteran
squirmingitch
Posted

Wait a minute. The op said in the dh forum that she had the rash with blisters just like the photos she saw of mine. I think she's celiac.

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squirmingitch Veteran
squirmingitch
Posted

So the gene tests say what you are NOT but fail to say what genes you DO have. Right?

And I'm copying & pasting here from another thread:

https://www.celiac.com/forums/topic/93450-please-help-me-interpret-my-4-yr-olds-celiac-panel-results/page__pid__802152#entry802152

This information is straight out of the book "Living Gluten-Free for Dummies" by Danna Korn. In this section, she talks about blood work and biopsy tests and how to read the results:<br style="color: rgb(44, 54, 68); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); "><br style="color: rgb(44, 54, 68); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); "><br style="color: rgb(44, 54, 68); font-size: 13px; line-height: 19px; background-color: rgb(250, 251, 252); ">"tTG (anti-tissue transglutaminase)-IgA: This test is very specific to celiac disease, meaning that if you have a positive tTG, it

KMMO320 Contributor
KMMO320
Posted
  • Author

This is the labs from Prometheus:

Reference

Deamidated Gliadin Peptide Antibody IgG (DGP IgG) <0.4 EU/ml <4.9 EU/ml

Deamidated Gliadin Peptide Antibody IgA (DGP IgA) <0.1 EU/ml <6.1EU/ml

Anti-Human Tissue Transglutaminase IgA ELISA (TTG IgA) <0.1 U/ml <10.3 U/ml

Anti-Endomysial IFA (EMA IgA) Negative

So, I am likely Intolerant and not Celiac, which is great. I am now wondering if I should bother seeing another Dr at all since I am likely not Celiac. I just dont know what to do. I dont want to go there and look stupid..like, the dr saying..hey you had all this work done you DONT HAVE CELIAC why are you here wasting my time?

Ugh. I just know something isnt right, you know?

Skylark Collaborator
Skylark
Posted

As Squirmingitch said, if you get a blistered, very itchy rash you may have dermatitis herpetiformis. The rash is autoimmune and if that's the case you DO have celiac. I don't know how the skin biopsy is done in someone with selective IgA deficiency but someone in the DH part of the forum might. Other than that, really all that's left as far as bloodwork is IgG TTG. It might be good to see if your Dr. will order it while you're still eating gluten, mostly so you don't keep wondering.

KMMO320 Contributor
KMMO320
Posted
  • Author

As Squirmingitch said, if you get a blistered, very itchy rash you may have dermatitis herpetiformis. The rash is autoimmune and if that's the case you DO have celiac. I don't know how the skin biopsy is done in someone with selective IgA deficiency but someone in the DH part of the forum might. Other than that, really all that's left as far as bloodwork is IgG TTG. It might be good to see if your Dr. will order it while you're still eating gluten, mostly so you don't keep wondering.

There is something here that says IgA TTG..

Anti Human Tissue Transglutaminase IgA ELISA (TTG IgA) <0.1 U/ml (Norm <10.3 U/ml)

If thats it and its negative I would be happy to cancel my appt and just eat gluten-free on my own and know that im not celiac , and am intolerant.

I am tired of doctors, to be honest

Skylark Collaborator
Skylark
Posted

There is something here that says IgA TTG..

Anti Human Tissue Transglutaminase IgA ELISA (TTG IgA) <0.1 U/ml (Norm <10.3 U/ml)

If thats it and its negative I would be happy to cancel my appt and just eat gluten-free on my own and know that im not celiac , and am intolerant.

I am tired of doctors, to be honest

Because of your IgA deficiency, IgA tests will always come out negative. There isn't any IgA to look for.

The only useful test you've had is deamidated gliadin IgG. If your doctor is willing, I'm suggesting you get the IgG version of TTG, just to be sure everything is negative for your peace of mind. :)

squirmingitch Veteran
squirmingitch
Posted

Just a reminder to remain eating gluten until the test is done or you risk scotching it. And IMHO it might not be a bad idea to keep the appt. @ the celiac center if you really want a firm dx. They may decide to retest you & even do another endoscopy so keep eating gluten.

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