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MK16

Help! DQ2 negative & DQ8 positive

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Had the genetic test done and one gene came back positive and the other negative.  Per my GI the negative gene is the major gene for celiac and therefore she does not believe I have celiac.  My upper Endo biopsy was also negative.  My initial bloodwork I had that started all of these tests showed celiac.  So now I'm so confused.  I've been gluten free for about 3 weeks and do feel an improvement but not 100%.   My symptoms pre gluten-free diet were bloating, gas and daily diarrhea.     Post gluten-free diet the gas and bloating has really improved.  Still have soft stool but that seems to be getting better.

GI dr now wants to put my back on antibiotics to treat SIBO which I have been on 3 different courses of.  I have continued to still test positive for SIBO.

so is celiac, SIBO, or something else?!

been dealing with all this since last June.  Just want an answer!!

 

 

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People with celiac disease can have ONE or BOTH genes.  Maybe your GI is not good at reading or understanding genetic celiac disease testing.  

https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/

or this in more detail:

http://emedicine.medscape.com/article/1790189-overview?pa=qsuhjzDuW9xIg8CC7fRRThp17JtzO2S4jAIDKazEyjejyi1chjUvZf3bTaxmeUIVVTSey3N5u9Pba%2BwszswXCCsFovC7sre62KO%2Fim3hebs%3D

Maybe post the actual results?  Exactly which celiac tests were positive?  Easy to miss damaged areas of the small intestine.  How many biopsies were taken?  

 

 

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Here is the celiac portion of my blood work

Tissue transglutaminase AB IGG 14. High

 
Immunoglobulin A. 77   Low
 
Tissue transglutaminase AB IGA  LESS THAN 1
 
Consider IGA deficiency.  Serological evidence of celiac disease
 
 not sure what that all means and still haven't been able to get explanation from GI

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On 23 January 2017 at 9:56 PM, MK16 said:

Had the genetic test done and one gene came back positive and the other negative.  Per my GI the negative gene is the major gene for celiac and therefore she does not believe I have celiac.  My upper Endo biopsy was also negative.  My initial bloodwork I had that started all of these tests showed celiac.  So now I'm so confused.  I've been gluten free for about 3 weeks and do feel an improvement but not 100%.   My symptoms pre gluten-free diet were bloating, gas and daily diarrhea.     Post gluten-free diet the gas and bloating has really improved.  Still have soft stool but that seems to be getting better.

GI dr now wants to put my back on antibiotics to treat SIBO which I have been on 3 different courses of.  I have continued to still test positive for SIBO.

so is celiac, SIBO, or something else?!

been dealing with all this since last June.  Just want an answer!!

 

 

Your GI may not believe its celiac but they have failed to exclude it. You have serological (blood) markers suggestive of it and you react to the gluten free diet, plus you have one of the genes... You may be one of those people who has damage further down the intestine only detectable via capsule endoscopy, or maybe yr non celiac gluten sensitive and don't have the atrophy they look for on the biopsy but still have a problem wi gluten. Unfortunately the diagnostic process isn't always clear and there are some that don't fit the criteria but do still have an issue with gluten. I'm one of them so I'm always worried when I read an account like yours that people will take he negative celiac diagnosis as proof that they don't have a problem with gluten. I think the best data you have in all of this is YOUR reaction to the gluten free diet, that's your body telling y something directly, listen to it! ?

Regarding SIBO I know very little, though a search of this forum will reveal a lot of experiences. From my ignorant standpoint however I agree with frieze, maybe it's time to ease off on the antibiotics and eat a really healthy gluten-free diet for a few months to see what level of improvement you can get that way?  

Good luck in whatever you choose to do, hope your improvement continues, don't let the tortuous process get you down!

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On 23.01.2017 at 11:56 PM, MK16 said:

Had the genetic test done and one gene came back positive and the other negative.  Per my GI the negative gene is the major gene for celiac and therefore she does not believe I have celiac.  

I'm not a doctor or in anyway good at understanding celiac disease, but this is the first time I see somebody differentiate between the genes as major and not major. Every other source I have seen thus far treats them equally, and says celiacs in 95% cases have at least one. So even if both genes test negatively, there is still a chance.

Anyway, have you read about low FODMAP diet? Is it better at explaining your problems?

http://bottomlineinc.com/before-you-give-up-gluten-try-a-low-fodmap-diet/

I've just tested negative on celiac disease myself, and I've decided to try to go both low FODMAPs and gluten-free for some time. If there is some improvement, I'll try to reintroduce later gluten or high FODMAPs (but not at the same time) to see if there is a reaction, and which diet is actually working out for me (or none, if there is a totally different issue). You might want to adopt a similar approach. And by the way, SIBO is the primary suspect for me right now.

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It would have been better for them to do the DGP  IGA and DGP IGG tests IMHO.  Although you seem to be IgA deficient so only the DGP IgG would mean anything.

Sometimes the only answer we can get is that gluten makes us sick.  And that's a pretty good reason not to eat it.  Celiac disease testing isn't perfect, and there are no tests for NCGS yet.  That's unfortunate since there are many more people with NCGS (around 6%) than there are with celiac (around 1%) and they have no test to prove NCGS.  There are no long term studies to say if NCGS is dangerous or not.  So it's up to the NCGS patient to decide if they want to eat gluten and be sickly or stay away and be healthy.

Not a tough choice IMHO, but some people do find it hard.

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