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creativemuse

Stuck in the gray zone and so frustrated

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I am so beyond frustrated. I have been having gastro symptoms for a while, accelerating recently, so I called my GP a few weeks ago. He was out for the week at the time, so I saw someone else in the office. She ran a DPG IgG and IgA as part of a bunch of tests and the IgG came back elevated (29 ref >20). She referred for an endoscopy. I took the first available and now know why he was available. He took one look at me and decided that I didn't have celiac. He ordered the rest of the celiac panel (TTG, total IgA, EMA) but was very huffy that I was even there, making several comments about "wrong test" and "not anemic" left unsaid was that I am overweight.  TTG came back positive (39 ref >20) and the EMA was negative. He called and said the bioposy was "showed inflammation but no celiac" but that I should go gluten free and see if it helps. I got the pathology summary today. He only took 3 samples and the results say "chronic peptic injury of the duodenum, no evidence of celiac or parasites". We are still waiting for the official genetic test to come back, but I did the Ancestry DNA test years ago and ran it through Promethease and it says I have the DQ2 and do not have DQA. So here I sit in the "maybe, probably, don't really know" zone. I feel better already after a week gluten free, I am sticking with it, but a true answer impacts whether my 3 kids and my siblings should have a lifetime of testing, how vigilant I have to be about cross contamination. I am so so frustrated that there is one shot at the "gold standard" test and he blew it by not taking enough samples. And "chronic peptic injury"? What the heck does that mean and should we be doing something about it? I saw a second GI this week for a second opinion and he was wonderful, but didn't have access to the pathology, so I have to wait for him to call me back when he gets the full report - and he can't go back in time and do the endoscopy correctly.

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Posted (edited)

Hopefully the 2nd GI will get the pathology and see a clear indication.  Unfortunately though celiac disease is somewhat difficult to diagnose.  There just isn't a foolproof way to get 100% accurate testing done right now.  Even the best tests have a small chance of error.  Having a positive on one antibody test is enough to show a problem IMHO.  I hope you get a clear answer.

Being overweight is not an excluding factor for celiac disease.  Sometimes peoples bodies store extra reserves when they are missing certain nutrients.  Did you have an vitamin deficiencies?  Low on D, B or iron?

Edited by GFinDC

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I used to be overweight....fact is when the body is being starved of certain nutrients it assumes it is being starved and for some people these means it stores everything it can like a hoarder....so you end up with a bunch of fat. Changing your meal composition and healing will help you shed it, but from my experience and dealing with many people here, weight and body size for this disease can be on either end of the spectrum.

The few positives you had, I would say something is going on and probably celiac....the intestines have the surface area of a tennis court.....always a chance your going to miss something with a tiny biopsy. He saw inflammation so something is irritating/causing damage.

Either go back on gluten and get tested done with a doctor that is not a entire asshat, or go with the partial positive dia you have and keep on gluten free. Go ahead and read the newbie 101 thread here . https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

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56 minutes ago, GFinDC said:

Hopefully the 2nd GI will get the pathology and see a clear indication.  Unfortunately though celiac disease is somewhat difficult to diagnose.  There just isn't a foolproof way to get 100% accurate testing done right now.  Even the best tests have a small chance of error.  Having a positive on one antibody test is enough to show a problem IMHO.  I hope you get a clear answer.

Being overweight is not an excluding factor for celiac disease.  Sometimes peoples bodies store extra reserves when they are missing certain nutrients.  Did you have an vitamin deficiencies?  Low on D, B or iron?

The second doctor I saw felt the same, that 2 positive antibodies + inflammation was enough to at least be proactive about screening for vitamin deficiencies, etc. but he is hoping for more clarity when he sees the biopsies. I had blood drawn Tuesday and so far D is low (not shocking, upper midwest after a looooong winter). Iron and B were ok and we are waiting on a few more. I know that being overweight is not an excluding factor at all, but sadly it is a prejudice from many doctors - lose weight and all your problems will be solved. I'm actually quite active and nearly a black belt in Taekwondo, but it is easy to judge by appearance.

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I dropped 30 lbs after going gluten free in a MONTH.  It seemed to be a lot of water flushing out of my body.  Underneath I was underweight and looked emaciated.  I've since built back 10 lbs of good weight in muscle and probably bone, and much healthier.

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On 6/15/2018 at 1:31 PM, creativemuse said:

The second doctor I saw felt the same, that 2 positive antibodies + inflammation was enough to at least be proactive about screening for vitamin deficiencies, etc. but he is hoping for more clarity when he sees the biopsies. I had blood drawn Tuesday and so far D is low (not shocking, upper midwest after a looooong winter). Iron and B were ok and we are waiting on a few more. I know that being overweight is not an excluding factor at all, but sadly it is a prejudice from many doctors - lose weight and all your problems will be solved. I'm actually quite active and nearly a black belt in Taekwondo, but it is easy to judge by appearance.

Hopefully the biopsy results will tell the tale as they say.  I am on rx D myself.  You can find info on vitamin D at the vitamin D  council site.  Seeing they just announced higher levels of vitamin D can help prevent colon cancer it's even a better reason to take some.  You can get natural vitamin D from oily fish like mackeral, sardines, salmon and tuna.  Other than that they do add it to milk and some orange juice in the USA.  The sun is another good source but only during certain hours of the day depending on your local latitude.

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I had a negative biopsy, but was able to get a diagnosis of Celiac. I had positive blood work across the board with a ttg-IgA of 76.9, normal being < 15.  When the biopsy came back negative I was sent for a genetic test. The genetic test came back positive with DQ2. 5 which labeled me "high risk". So I was put on a trial gluten free diet.  My antibodies went to normal in 12 weeks. I was later tested for vitamin deficienies and a bone density scan. I was found to also have osteoporosis and a vitamin D deficiency. Since then my daughter has also been diagnosed. Keep on it.

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Followup - nurse sent me a note via mychart that "the gene test was negative" but if I feel better gluten free, I should continue it. This was a big surprise, since I already ran the info through Promethease and it said Dq2 Positive Dq8 negative. So I went to the test results themselves. Sure enough Dq2 positive, Dq8 negative with a note from the doctor saying "patient carries only the dq2 gene, not the dq8. This means she is much less likely to have celiac sprue."  I could spit nails. I am educated, I know that 80% of people with celiac carry only DQ2. I have already had a followup with a different GI who was wonderful. But this is how people go 10 years undiagnosed and only find it when they are so sick.

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It is so frustrating that so many in the medical field know so little about celiac disease!  After you have been on the gluten free diet for 6 to 12 months perhaps your new GI can order the antibody tests again to see if the levels have gone down.  Lower antibodies on a gluten free diet would point towards celiac disease.

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After I posted this, he called me because I replied to the note questioning if I was reading the test results correctly because they didn't look negative to me. He told me that A. diarrhea is not really a symptom of celiac (huh, wonder why all the poop jokes about it then...) B. if I had both genes plus a positive antibody test, that would mean that there was about a 95% chance that I do have celiac right now, not a potential to develop it and C. if I stay on a gluten free diet (which I don't have to because he says I don't have celiac) then he won't retest the antibodies because of course they will go down and there is no need to test. I'm pretty much speechless. It is abundantly clear why he was the first available when others had a wait.

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2 minutes ago, creativemuse said:

After I posted this, he called me because I replied to the note questioning if I was reading the test results correctly because they didn't look negative to me. He told me that A. diarrhea is not really a symptom of celiac (huh, wonder why all the poop jokes about it then...) B. if I had both genes plus a positive antibody test, that would mean that there was about a 95% chance that I do have celiac right now, not a potential to develop it and C. if I stay on a gluten free diet (which I don't have to because he says I don't have celiac) then he won't retest the antibodies because of course they will go down and there is no need to test. I'm pretty much speechless. It is abundantly clear why he was the first available when others had a wait.

Fun fact, google your doctors name, 2-4 review sites will have them and their info. You can submit a public review of your doctor.......inform people of this story on the review sites and this doctors "incompetence" in relation to your disease.

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