Questions About Possible Diagnosis

[knittymama]

Greetings!

 

I have been 99% gluten free for the past 1.5 years at request of my accupuncturist. My lifelong symptoms pretty much include everything on the list of common celiac symptoms: chronic gas and diarrhea as a child, respiratory  and sinus issues my whole life, chronic skin rashes, and as I have gotten older (now 40) severe joint and muscle pain, IBS, anxiety, fatigue and more.  The only exception of my gluten free diet has been beer (I have such a weakness for a good craft IPA!), of which I usually have 2-3 a week, and then occasional ingredients in restaurants or at a friends house...things like soy sauce, yeast extract, that sort of stuff.

 

At my last physical my GP noted that while my symptoms have greatly improved they are not gone and wanted to do a celiac test on me. She thought that the beer alone might be enough. My test results were that my IGa was >2 and my IGg was a 33. Because of these odd results she referred me to a GI. He ran a "more complete panel" on me and just sent me a message saying my results were "normal" but told me no numbers. He wants to do a biopsy because of the different results. 

 

My question is, I know that I feel better off gluten but would like to know if it is celiac or not as it would motivate me to be %100 gluten free. I also have children with potential gluten sensitivity and a diagnosis for me may help family members take my childrens' issues more seriously. However, after all this time of being  99% gluten-free, with the biopsy show anything? Is it worth it? Money is no issue as I met my deductible so this is a "freebie" it's more about going through an unpleasant procedure. 

 

Any thoughts? Thank you!

[nvsmom]

Welcome to the board.  

 

A few beers a week may or may not be enough gluten to give you accurate celiac disease tests.  The tests are most accurate when the patient has been eating the equivalent of 1-2 slices of bread per day in the 2-3 months prior to testing.  A beer would probably qualify as a slice of bread, in that case you are consuming approximately 25 to 40% of the gluten needed for a test.  Beer has a fair bit of gluten in it, so combined with the other smaller sources of gluten, you are probably not as gluten free (or gluten light) as you thought.... But you probably should eat more gluten before getting tested.

 

If you can, delay the test a couple of months and try to eat more gluten in the meantime.  You don't need to overload yourself with gluten so you are very ill, but if you eat a bit more than needed, you stand a better chance of accurate blood tests.

 

I'm not sure which tests were run on you. I'm guessing it was the tTG IGG and tTG IGA.  These are the blood tests for celiac disease:

• tTG IGA and tTG IgA - tissue transglutaminase - most common tests
• DGP IgA and DGP iGG - deaminated gliadin peptides - newer tests
• EMA IgA - endomysial antibodies - very similar to the tTG tests, detects more advanced damage
• total serum IgA - a control test
• AGA IgA and AGA IGG - antigliadin antibodies - older and less reliable tests that were replaced by the DGP tests

The endoscopic biopsy only needs 2-4 weeks of gluten. 

 

Some of the symptoms you mentioned can take a couple of years to go away on a gluten-free diet (they won't go completely on a gluten-light diet if you have celiac disease or non celiac gluten intolerance NCGS).  Joint pain is one that can linger for a long long time. I'm over 2 years gluten-free and it is mostly better for me now.

 

You should have your kids tested if they have gluten issues.  If they are negative, you could try the gluten-free diet for 6 months to see if it helps.  As long as you are strict with them, then other peoples' opinions won't matter much.  Go 100% gluten-free though if a problem is suspected. 99% gluten-free won't cut it.... Think of it like a nut allergy - a small amount can hurt.

 

My kids had gluten issues but tested negative.  I treat them as though they have celiac disease.  At this point for us, their improved health  is worth the hassle and the inconvenience. But that is just us.

 

Good luck with whatever you decide to do.  

[ravenwoodglass]

It would be so nice if acupuncturists, naturopathic and chiropracters would advise folks to get tested before trying the diet. It would make things so much easier on us. Nicole gave you some great advise and I hope after doing a challenge you get clear answers. If not then it would be a good idea to get strict with the diet after all your celiac testing is done. Being gluten light won't help if you really need to be gluten free because it won't stop the antibodies from forming. There are some good gluten free beers out there. Maybe when you get strict you could switch to those. Green's is one that comes to mind.

[kareng]

Just an FYI- many beers are very low gluten. I wouldn't feel confident that the negative means you don't have Celiac.

[SMRI]

I agree, your acupuncturist really did you a big disservice by not getting your testing done before you went gluten-free.  Also, your symptoms are not gone because you are really not gluten-free.  Which IgG test did they run?  If that is the Tt IgG then the 33 is a positive.  Did the GI know you were basically gluten-free when they ran their tests?  

 

I think it would be worth it to do the scope before the end of the deductible year just to confirm but I would start eating more gluten foods between now and then for more accurate results.