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Second Guessing Diagnosis

Jrg

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Jrg Newbie
Jrg
Posted

A week ago my Dr called me in for my blood work results. I was severely low on vitamin D, iron & b12. Plus I had a celiacs blood panel done and I came back positive for only 1 of the 4 tests (the deamiated gliadin iga). So off I went to the specialist to schedule my endoscopy. (Also I should note that I have hypothyroidism and have been dealing with that for almost 20 yrs, I'm 26).

Anyways, my normal Dr had me feeling quite confident that I had celiacs, I had all the deficiencies, the other autoimmune disease, most of the physical symptoms, but my specialist Dr left me second guessing if I really do have it just because only 1 of my blood tests came back positive. He seemed to think that unless the ttg tests came back positive, then it probably was a lab error, getting my one positive.

I'm doing the endoscopy in a week & I know that will make it official either way, but I'm feeling pretty defeated. I honestly was hoping for an end all "cure" (aka just go gluten free, etc) to my situation, but now I'm convinced my biopsy will come back negative. Anybody else go through this?

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GottaSki Mentor
GottaSki
Posted

Was this a gasterenterologist that specializes in Celiac Disease? - sadly not all do.

With deficiencies, AI symptoms and a positive DGP I would remove all gluten after the biopsies...regardless of results - then retest the celiac antibodies and nutrients at six months and a year. Sometimes AI symptoms take longer than digestive symptoms to resolve so the blood can show if you are no longer producing antibodies and are absorbing nutrients better.

Hang in there...either way give living completely gluten-free the opportunity to improve your health.

Ps...we do have members that were diagnosed by biopsy with ALL negative antibodies...not everyone produces them and you do produce one very specific to gluten already...I wouldn't wait for the others to become positive.

bartfull Rising Star
bartfull
Posted

Also, make sure they do at least EIGHT samples when they do your biopsy. Some "Doctors" only do two or three, and as the damage is often spotty, they miss the damaged parts.

nvsmom Community Regular
nvsmom
Posted

There are quite a few people around here who were diagnosed using the DGP tests, it seems to catch many celiacs that the tTG misses - the tTG IgA misses up to 25% of celiacs.

 

There are also many who were diagnosed using only the IgG version of tests rather than the Iga versions... doctors seem to doubt those too for some reason.

 

From what I have seen, many doctors want all the stars and moons to align before they will give out a definitive diagnosis... I have no idea why.  :rolleyes:  If the doctor thought your DGP lab result was a fluke, did he order a repeat test? If not, I'm guessing he is one of those reluctant to diagnose doctors.

 

Good luck with the endoscopy.  Keep eating gluten until your testing is done.

Jrg Newbie
Jrg
Posted
  • Author

Thank you everyone! Yes, I'll definitely be chowing down on gluten before my intestinal check! Now that I look back at my labs, my Ttg levels were very low, in the .7-1 so perhaps I just didn't have much gluten in my system? Either way, I feel more at ease with my blood work and will just try and be patient during this last testing phase.

AlwaysLearning Collaborator
AlwaysLearning
Posted

Even if your endoscopy/biopsy comes back negative, I say go gluten free anyway and let your body tell you if gluten is a problem for you. If you do have a problem with it, more than likely, when you go gluten-free, you'll notice lots of other changes in your body that you may not have even realize were troubling you before. I'd trust personal experience more than any test or doctor out there. But great that you're doing things in the proper order!

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      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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