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Mum in Norway

Could This Not Be Celiac?

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To make a short question long (feel free to skip this part): I have known for many years that bread, pasta and other wheat-based products make me unwell. I have gradualy come to have a diet that doesen't include many of these foods, but without beein totaly glutenfree. About 6-7 years ago I did the bloodtest for celiac that you can do at home, it came back negative. A year later i tryed it again, and it was still negative. I continued having problems with gluten, and mentiond this for my doctor at the time, who said that if the tests I'd taken at home were negative, there was no point in any more testing, as they tested for the same thing at the doctors office. So I figured it was just an intolerance or something, and stayed away from most gluten.

Then, this spring, I went to have an allergy test done. I askd the doctor about symptoms of whete allergy, even thou I knew my symptoms were not allergysymptoms, just in case. By now I have mooved, and as my regulare doctor was not available one of the others doctores at the office was doing the test, and she said she wanted to test me for celiac, even thou I said I'd taken the home test twise.

I then got the testresults by mail, with a lether from the doc that had taken them saying that it was mostly normal, apart from DGP-IgG, wich was slightly elevated, but not enough to be considerd positive, and that this was most likely unsignificant.

I then called my regular doc and told him this and the fact that I have been eating very little gluten for several years, so he wantet me to do a gluten challange for a month and then have a new test. After two weeks I was not able to do it anymore (working alot, beeing a stundent with exames coming up, children to look after...) and did the new test. It came back even a little more elevated, just enough to be considerd positive. So doc sendt me off for biopsy at the hospital. I'm having it done early september, with strickt orders to 'eat normaly' untill then. As I'm trying to do that I notice more and more symptoms i never related to gluten getting worse, I'm realy ill now, pretty much the whole list of symptoms

 

So my question is; with only DGP-IgG elevated, and only slightly but getting worse after gluten challange, and the fact that gluten makes me realy sick, much more so than I have ever been aware of, could it still be somthing other than celiac causing it? It could always be NCGI, but that would not explain the elevated IgG, would it?

 

Guess I'm afraid they won't pick it up on the bio, and people are gonne think I'm just imagine things. Feels like it already, caus I never made a big point out if staying away from gluten, and I'm not the type to complain about headaces or jointpain, stomaceaces, nauchia and 'little' things like that, so my family feels taht this is just out of the bue..

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My blood test results came in as "mildly positive".    I continued to eat gluten (a lot -- almost a loaf of bread a day since I knew in my heart that I had celiac disease and I binged on all my old favorite gluten foods) until my biopsy (endoscopy) seven weeks later.  My biopsy results showed Marsh Stage 3B.   My prior symptoms before testing only included anemia and Hashimoto's Thyroiditis.  After my blood test and eating tons of gluten foods, I developed stomach pain (felt like a "rock" was in my stomach).  Indigestion, nausea, gas, etc.  -- just about every abdominal symptom.  Extreme fatigue and irritability as well (though my thyroid and anemia may have been the contributing factor).  

 

About following the gluten-free diet for seven weeks, my abdominal symptoms resolved.  I'm okay as long as I don't ingest gluten and avoid those foods I have an intolerance to or any allergy (e.g. milk, eggs, garlic/onions, mushrooms and nuts).

 

To answer your question, you may very well have celiac disease.  Since you have gone this far, I suggest that you continue to consume gluten until your biopsy in September.  

 

Good luck!  You can do it!

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Mum in Norway, I can totally relate to how you're feeling, but I would say continue to eat gluten and get that biopsy done!!  Make sure they take at least 6 samples from the duodenum and jejunum.  I know you had said that if you get it confirmed via biopsy, you get financial assistance in Norway.  You've come this far, and September isn't too far off.  You can make it!

 

I've gone round and round with the positive DGP IgG score, but I ended up having a negative biopsy.  The doctor I had didn't go into the jejunum, and I wish he would have.  I also wish I would've gone to a celiac center to have a biopsy done, but shoulda, coulda, woulda  :)  I'm off gluten, and my BM have normalized!  I didn't have to do a gluten challenge, and I'll admit I'm curious as to what would happen, but not curious enough to become constipated, bloated, full of anxiety etc.  

 

If your score was a weak positive, but increased with gluten consumption, I say it is celiac.  Here are some threads I've started regarding DGP IgG. 

 

My advice is to eat at least 4 slices of bread a day.  If that's all you can handle for the day that's fine.  Eat it at night, so that hopefully your symptoms won't affect you as much.  Just keep eating it until after that biopsy!  

 

https://www.celiac.com/gluten-free/topic/100245-other-known-causes-of-high-dgp-igg-besides-celiac/

 

https://www.celiac.com/gluten-free/topic/101686-chicago-celiac-center-response-regarding-dgp-and-ttg/

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