only DGP Iga positive and strong symptoms

[mam]

Hi,

I went to several doctors and I have the feeling they don't believe in Celiac disease. Since 4 years I have decreasing iron levels in my blood (anemia), despite taking supplements. I'm very skinny, I have mouth ulcers, infections, fatigue for over years and years, constipation, anxiety, acid reflux, intolerance for dairy.

 I asked the doctor to test the celiac panel:

IgA tTG: 0.4 (levels 0-4 are normal),

DGP IgG (< 0-4) so negative, 

DGP IgA: 16 (>7 is positive, >10 is strong positive).

Doctor didn't take much attention to it and gave me again iron pills.

I went to specialist and he said, he only looks to IgA tTG results which are negative so no celiac disease.

I don't know.. celiac disease would explain a lot. And why I do have a positive DGP IgA? Can it be false positive? And what could be another reason?

In meantime I tried out a gluten free diet and I love it! No acid reflux anymore, no constipation anymore. Rest is not changing (yet) but I only started 3 weeks ago and I must admit I'm cheating a bit. Yesterday I ate some gluten and within half an hour I had bloating, gas, itch all over the body.

Is there a chance I have it? How to continue?

[cyclinglady]

Excuse me, I have to scream!  Ugh!!!!!!!!

Any positive on the celiac panel requires a GI doctor to order an endoscopy and take four to six biopsies of the small intestine to diagnosis celiac disease!  

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Who dismissed your test?  A GP or a GI doctor?  You need to find a celiac-savvy doctor.  Out of the complete panel, I had only one positive, like you, on the DGP Iga test.  My biopsies revealed a Marsh Stage IIIB which is moderate to severe intestinal damage.

I am so sorry that your doctor in incompetent!

Since you are cheating and are still consuming gluten, I would insist on a GI referral and insist on an endoscopy (keep eating gluten until all testing is complete).   Okay, so the cure is going gluten free.  But it is for life!  And NO CHEATING!  See, you are already cheating!   It is so hard to maintain a diet when you don't really know if you have the disease. Plus, this is genetic, so all first degree relatives, even if they do not have symptoms, need to be screened! 

I am formally diagnosed.  It took me two years to feel really well and I knew for sure that I had it.  My hubby went gluten-free 14 years ago based on very poor advice of my allergist and his GP, "Aw, try going gluten free and see how you feel."  Well, it worked.  But it was hard. He's the first to say that I have had way more support from medical, family and friends that he has had.  Most people think he's nuts.  But, seriously, autoimmune runs strong in both our families, so we are pretty sure he has it or a sensitivity to gluten.  HE NEVER CHEATS as the consequences are to severe.

Please do some more research and find a better doctor.  Take care!  

[mam]

Thank you so much !!

It's how I felt also, not understood and taken seriously. 

First time it was my GP (where I had my blood tested), then I took the results to my GI who didn't take it seriously. I'll go to another GI for sure.

Indeed, it's difficult to stick strictly on the diet. And it's so difficult to know where there is gluten. Like sauces or other threated food.

So I need to get my kids tested when it's diagnosed on me? My oldest is quite skinny also and has delayed growth so it's possible we're having celiac..

[cyclinglady]

Yes, if you are diagnosed with celiac disease, your kids (parents and siblings too) should be tested even if they are normal or above normal weight.  Celiac disease is genetic, but environmental triggers (stress, illness, etc.) set it off.  You can skip testing if you have the genetic testing done.  This will tell you that they can develop celiac disease (some 30% or more Americans carry this gene but only about 1% ever go one to develop celiac disease).  If negative, your kids may never need to be screened again (unless they discover new celiac genes in the future).

Be sure everyone is consuming gluten or the tests will be invalid.  

The Ttg test is the most popular celiac disease screening test.  It is effective, catches MOST celiacs and let's face it, it is cheaper to do this one test and hope to catch a celiac, than run an entire panel which costs more!  Doctors figure the Ttg test is best, but that is not the case.  My own insurance and provider (sadly) allows GP's to only order the TTG test (save money.....).  So, for follow-up testing, I have to go to a GI who is authorized to order the complete panel which includes the DGP.  I never am positive on the TTG.  My research reveals that this is common in infants and toddlers.  But I am over 50!  Just goes to show you that some folks are just special!  

Find that new GI.  It is hard to take advice from strangers on the internet, but finding a doctor who can help you is critical.   Let me tell you that two months after my diagnosis, I fractured my back doing NOTHING!  Yep, I have osteoporosis.  Last bone scan showed that I am holding my own.   Hidden damage is a real issue for celiacs.

 

 

[mam]

OK, thank you!

So in fact if I'm doing the genetic test and it's positive, I have a big chance to have it? I believe I have it, that's why I keep searching on the internet for it. I'll find another good GI now.

Indeed. The anaemia started after I gave birth to my 3rd child, and since I'm coping with lots of stress since 1,5 years it was all getting worser. I had more symptoms. 

I believe that Europe is not that far in knowledge and research as in America. Less known by the doctors here. 

The consequences seems to be severe, yes.

take care !

[cyclinglady]

No, the having the genetic test come out positive means that you are one of 30% or more Americans (not sure if Europe is included) who have the gene that could turn into celiac.   Only about 1 in 130 people with the celiac gene get celiac disease.  It's a pretty rare disease.  The genetic test just rules out celiac disease.  It is not for diagnosing celiac disease.

For example, if a person tests negative for the celiac gene they can never get celiac disease.  They never have to worry about developing it ever.  If the person has intestinal issues, this tells the doctor to investigate something else like a parasite, cancer, Crohn's, etc.  

Read the link and print them off to show your next doctor.  The list for the blood tests is there.  

Celiac is well known in many countries of Europe.  Where are you from?  

[mam]

I'm from Belgium. On the paper to have blood tested of my GP there was DGP IgA, on the paper of this GI doctor there was no DGP IgA, only Ttg and AGA IgA but he didn't test it because the Ttg from GP showed already negative results. So it was excluded for him immediately. And anyway, he said, the testing is not yet reliable so the results say nothing.

OK, got it :-)

Maybe 1 more question, if it's celiac disease, I would need to take antibiotics to have the infection gone on the gut or "just" take the gluten-free diet?

thank you so much!!

[Irene Joanne]

6 hours ago, mam said:

I'm from Belgium. On the paper to have blood tested of my GP there was DGP IgA, on the paper of this GI doctor there was no DGP IgA, only Ttg and AGA IgA but he didn't test it because the Ttg from GP showed already negative results. So it was excluded for him immediately. And anyway, he said, the testing is not yet reliable so the results say nothing.

OK, got it :-)

Maybe 1 more question, if it's celiac disease, I would need to take antibiotics to have the infection gone on the gut or "just" take the gluten-free diet?

thank you so much!!

Just the gluten free diet. No need for antibiotics. I needed a dose of antibiotics over Christmas for strep throat- with my intestinal damage from celiac, my body did not handle the antibiotics very well.... 

[cyclinglady]

Mam,

I think you need to do more research about celiac disease.  It is not an infection (though it could be triggered by one but no one knows what triggers celiac disease).  It is a life-long autoimmune disease and the only cure is eating gluten free.  It is the only autoimmune disease that can be managed by diet.  

The only test that is now considered outdated (unreliable) is the AGA which as been replaced with the DGP and is just as reliable as the TTG.  

[SLLRunner]

17 hours ago, mam said:

I'm from Belgium. On the paper to have blood tested of my GP there was DGP IgA, on the paper of this GI doctor there was no DGP IgA, only Ttg and AGA IgA but he didn't test it because the Ttg from GP showed already negative results. So it was excluded for him immediately. And anyway, he said, the testing is not yet reliable so the results say nothing.

OK, got it :-)

Maybe 1 more question, if it's celiac disease, I would need to take antibiotics to have the infection gone on the gut or "just" take the gluten-free diet?

thank you so much!!

If you have celiac disease, you are not supposed to knowingly eat gluten ever again because to do so further damages your intestines. It's not an infection, it's a disease of your immune system--antibiotics don't come into play here. 

[mam]

Yes, I agree. I read a lot in meantime. If I would have followed my doctors and missed the diagnosis of celiac disease.. (if I have it, but big doubts)

It's not an infection but an auto immune disease, but it causes an infection when celiac is not treated. Gluten free for life is the only treatment and in meantime check-ups of vitamines etc

thanks !

[mommida]

I don't put full trust in the genetic testing.

There may be a  language barrier to how you are explaining Celiac.  It is an auto immune disease~ the body's immune system attacks and destroys normal healthy tissue of the small intestine.

If I remember right the starving children of Belgium during World War 2 helped find the gluten free diet treatment of Celiac.  (During the 20's "banana babies" or children found to be suffering from malnourishment/wasting no matter how much they ate of normal diet.)  Well the children that suffered from this severe malnourishment did better during the famine.  When the normal diet was then introduced, the children became sick again.  It was the biggest clue that the diet was the root cause of the illness.

If you are Belgian or northern European descent you have very good odd of being genetically predisposed to Celiac and pregnancy or stressor to your immune system acts like a "trigger" to activate an auto-immune disease.