What Do You Think?

[Wildgirl]

Because of having breast cancer, and the connecting with low vit D and recurrence, I found out that my D was low. Very high levels of prescription D were barely budging it. Celiac was one of the possibilities - Blood tests showed the deaminated gliadin iga to be >150 (normal 0-19). So I had an endoscopy at our local hospital which was negative. I had been avoiding gluten up to two weeks before the endoscopy, when I was told to start eating it. Not sure if avoiding gluten could cause such a high iga but neg iga -? (Other blood tests were normal). Soooo, my endocrinologist and GI drs (at a larger teaching hospital) both still suspect celiac. I was told to go all out with gluten for 6 weeks and they redid the blood tests - basically the same results. So now I'm going to be seeing the GI dr again next week.

What should I expect? Is it unreasonable to have another endoscopy at this better hospital? My endocrinologist thought the GI dr might just say to do a celiac diet - but I'm afraid to go on such a strict diet without more evidence that im really celiac. What would be reasonable at this point? What questions should I ask the GI dr?

[cyclinglady]

My tTG tests were negative.  Just one of the DGP's was positive, yet I had a Marsh Stage IIIB diagnosis per the biopsies.  The intestinal tract is vast (size of a tennis court), so celiac savvy doctors take the recommended six samples throughout.  How many did they take?  My visual endoscopy revealed nothing!  

 

How long were you gluten free?  Just gluten-free just prior to the endoscopy?  Usually you need at least four weeks of eating gluten daily before the endoscopy.  Doctors usually request that you keep eating gluten between the blood tests and the biopsies.  But many folks have to wait months for the endoscopy to get scheduled, so four weeks is usually the minimum.  

 

Exactly what celiac blood tests were ordered?   Can you post them?  

[nvsmom]

Welcome to the board.  

 

With a deaminated gliadin peptides (DGP IgA) that high, it is most likely that it was caused by celiac disease.  False positives are very rare, around 5% of the time (and those are weak positives like a 20), whereas false negatives are more common, up to 1 in 5 endoscopies of celiacs yield a false negative, especially if 4 or fewer biopsy samples were taken.

Info on the tests is in this report: Open Original Shared Link

 

My guess is that you have celiac disease but the doctors missed it during the endoscopy.  I would guess that at least half of the people around here had a mix of positive and negative tests - it's pretty common.

 

If you need more evidence before accepting a celiac disease diagnosis, by all means, do the endoscopy again.  Make sure you are eating gluten every day in the month before the test, and ensure that the doctors take 6 or more samples to increase your odds of having an accurate biopsy.  Get the other blood tests done too: tTG IgA, tTG iGG, EMA IgA, and DGP IgG.

 

Best wishes

[RMJ]

Another form of evidence would be to go gluten free and see if the antibody levels normalize.

[Wildgirl]

Here are the blood test results

Component Results

Component Standard Range Your Value

DEAMINATED GLIADIN ABS, IGA 0 - 19 units >150

Negative 0 - 19

Weak Positive 20 - 30

Moderate to Strong Positive >30

DEAMINATED GLIADIN ABS, IGG 0 - 19 units 2

Negative 0 - 19

Weak Positive 20 - 30

Moderate to Strong Positive >30

t-TRANSGLUTAMINASE IGA 0 - 3 unit/mL <2

Negative 0 - 3

Weak Positive 4 - 10

Positive >10

Tissue Transglutaminase (tTG) has been identified

as the endomysial antigen. Studies have demonstr-

ated that endomysial IgA antibodies have over 99%

specificity for gluten sensitive enteropathy.

T-TRANSGLUTAMINASE IGG 0 - 5 unit/mL <2

Negative 0 - 5

Weak Positive 6 - 9

Positive >9

ENDOMYSIAL ANTIBODY IGA Negative Negative

IMMUNOGLOBULIN A QT 91 - 414 mg/dL 143

So you really think I could be celiac? Considering how extremely strict the diet is, would you want another endoscopy to prove it?

[cyclinglady]

Well, I am not a doctor, but based on what you presented....Yes, I think you could have celiac disease.  You presented the same way I did with only  DGP being positive and the tTG negative!  I understand your denial.  I was shocked when my DGP was high.  My husband has been gluten free for 14 years based on some poor advice from his GP and my allergist.  Yes, he has healed and is doing great, but wishes he had a proper diagnosis, but is not willing to do a gluten challenge.  He knows that gluten makes him sick!  So, I needed that endoscopy to verify that I really had celiac disease.  I did.  

 

Perhaps, you should push for another endoscopy making sure you get at least six biopsies.  Or if your doctor is willing to give you a diagnosis without the endoscopy, go gluten free.

 

The damage that celiac disease can cause is great.  You already have been dealing with cancer.  Untreated celiac disease at worst, can cause more cancer.  The diet sounds daunting, but it is manageable.  It's just going to take some time to learn.  The results can be amazing -- feeling good and healthy!  

[Wildgirl]

Wow. I wish it wasn't such a big deal to do the endoscopy.... I'm concerned that I will have a hard time being sooo strict - especially when eating out or going to a friends house or picnic - if I don't know absolutely. If I had absolute proof, then I know I'd be determined... But then maybe the blood test really is proof and I'm just not wanting to accept the reality...

I spent so much time researching everything about breast cancer - I was done and wanted to move on with life. I don't see how I can avoid more intense research if this is celiac - there's so many things to be aware of ...

Another. Question then - are there ant other issues that tend to go along with celiac? Like if you're celiac, you could also have this or need to watch for that?

Thank you so much for your help - I have a LOT to learn!

[cyclinglady]

Here's a link regarding symptoms:

 

Open Original Shared Link

 

Once you have one autoimmmune disorder, you tend to accumulate more.  This includes:  Hashimoto's Thyroiditis, Type 1 Diabetes, R. Arthritis, Lupus, etc.  So, it can be important to have a diagnosis, so that doctors can be "on the lookout" for new diseases.   There are some hidden potential problems.  I had fractures two months into my diagnosis.  I had no idea that I had osteoporosis!  

 

 Others are not so lucky to get a diagnosis for so many reasons, but strict adherence to the diet is a tell-tale sign that you have gluten intolerance.  

 

I know that this seems overwhelming and it is....in the beginning.   I'm sure you went through a period of grief with your breast cancer.  It's the same thing each time you are diagnosed with something!  

[cyclinglady]

I forgot about vitamin defciencies. Those usually resolve on a gluten free diet. Haven't you been struggling with low vitamin D? I struggled with low iron, despite supplements, prior to going Guten free.

[Wildgirl]

Yes, D has been an issue - that's what began this whole process that is questioning celiac being the culprit.

That did make me wonder though - I have had other nutrient levels tested - like iron - and everything else is normal. Wouldn't they all be off if it were celiac?