The Usual Question: Help Needed on Test Results

[bmarsh28]

Hi all. Very frustrated here (as I have noticed the trend with the pre-diagnosis!) I just joined but have been reading countless threads on my journey since October 2017. I figured it was time to ask and be involved in a community because my doctor seems to overlook all my results and just seems to quick to write off anything thought provoking in my labs. 

 

Long story short, ongoing maybe 15 years (if not more, I'm 24) of bad stomach GI symptoms. Eating food and immediately bloating to the point of actual pain, sour stomach, constipation for days then crazy diarrhea, cold sweats and horrible stabbing pains. What I would have described as just IBS episodes and what was originally what I thought it was when I went to the doctor for the first time in Oct. Other times I just wrote it off as just bad luck. 

Throughout the months I've undergone blood work, endoscopy and colonoscopy, genetic tests and diet options. Surely all this would give me an answer! Alas I'm still just as lost and frustrated as before I even came in. 

Let me break down the results:

Blood work came back incredibly high for Ttg Igg. Negative for all else, ttg iga, Ema, the other dpg iga and igg. (I will come back to this in a minute). 

Endoscopy reports increased intraepithelial lymphocytes, normal villous architecture. No signs of h pylori or other gastrointestinal bacteria out of the ordinary. Latent gastritis. 

Genetic test comes back positive for DQ2.2 (and DQ8.1 for what it's worth.)

Colonoscopy I had some polyps that needed to be removed but quite irrelevant to any celiac (to my knowledge). 

After I had my endoscopy and colonscopy, I thought that maybe the polyps were the issue and okay good to go. I had a horrible episode which left me lying in the floor for half an hour in pain, sweating, bloating etc. I knew that I needed to make a dietary change or something that I could have control over, so I tried low fodmaps. 

Did that for the time allotted and went into the reintroduction phase with little issue. Only problems I had with a food group was gluten. So here I felt like going gluten free would be the best option. At this point I had already gone under endoscopy and had blood work twice. The first blood work I had was the full celiac panel, as mentioned before ttg igg was so off the charts, dpg iga and igg was fairly median, and ttg iga was really low with Ema low. When I told my PCD that I was starting low fodmap (I had been low fodmap for three or four days and was still trying to figure out what I couldn't eat) she ran another celiac panel. I had been off everything including gluten, and the panel came back very low now for dpg igg and iga, still pretty low for ttg iga, neg for Ema and still pretty high for ttg igg. 

Anyway, I stuck to the gluten free diet for a month and had some major withdrawal. Depression, anxiety, sickness, you name it. But about two weeks after I felt like I had seen the sun for the first time in decades. My physical fitness is better, I have not had an episode since I started the gluten free (two months total while writing this) and I have (what I assumed to just be female scatter brain) no brain fog. I am shocked at how going gluten free has changed me, I'm literally a new person and I haven't felt this good in along time. Mentally, I'm so much healthier. 

So after being on the gluten-free diet for a month, I went back to the GI doc who did my endoscopy and told him what I had experienced. At this point because I had such a positive reaction to gluten-free, I was considering a gluten intolerance or celiac. I pointed out my lab work (which he seemed to overlook previously because he actually had to leave the room and go look at my results again) and came to the conclusion that he felt it was the early stages of celiac (he called it subclinical celiac). I asked for a genetic test because both my parents have food intolerances but we are a family that really never goes to the doctor, we just suck it up and chalk it up to a bad meal, so neither of them have been tested or allergy paneled, etc. 

I came back positive for the DQ2.2 and DQ8.1, but when the GI called me, he was so quick to write me off that I was negative on genetic tests, it was not until I went to physically collect my results to read myself that I realized I actually did come back positive, despite being told I was negative. So needless to say I was upset because I've done enough research to know that while it is not the most common, the DQB1*02:02 and others that make up my positive genetics are still important. This has left me so angry because it's a rollercoaster of "am I diagnosed, am I not?" the GI doctor over the phone said still possibly celiac so check up in a year. A YEAR! For, not a "no," but a still possible! 

I should be satisfied to know that my symptoms have cleared and I feel so much healthier on gluten-free, but I'm just feeling lost again. 

To add, I have been diagnosed on and off as anemic through my life, since my IGAs were so low, my PCD and I were looking into an Iga deficiency, but I haven't been confirmed that, not sure how I would. I have plenty of symptoms of that, to include annually in high school and college getting pneumonia (bacterial and viral), strep (skin rash included), bronchitis, etc. To the point I almost had to get a pneumonia shot at age 20! 

So I guess what I'm looking for is feedback and the comfort of knowing I'm not the only "possibly kinda sorta maybe" celiac out there that just can't get a straight forward answer. I hate to go on about it to my family because they are so sweet and supportive, but they really just don't understand even if they try. 

[Ennis-TX]

Sounds like celiac, they can miss stuff in the endoscope and biopsy due to she sheer are size of the intestines, and you had some blood positives so something is going. At the very least elimination diet confirmed gluten to be a major issue, so your either celiac or NCGS. Either way gluten free for life no cheating, or chances is your cure/treatment....I would chock it up to a idiot doctor who is not celiac savvy.

[cyclinglady]

At this point, consider just going gluten free and be done with it.  While I am formally diagnosed, my hubby is not.  He has been gluten free for 17 years (12 years earlier than me).  The goal is to feel well, isn’t it?

[Anitamarie]

2 hours ago, bmarsh28 said:

Hi all. Very frustrated here (as I have noticed the trend with the pre-diagnosis!) I just joined but have been reading countless threads on my journey since October 2017. I figured it was time to ask and be involved in a community because my doctor seems to overlook all my results and just seems to quick to write off anything thought provoking in my labs. 

 

Long story short, ongoing maybe 15 years (if not more, I'm 24) of bad stomach GI symptoms. Eating food and immediately bloating to the point of actual pain, sour stomach, constipation for days then crazy diarrhea, cold sweats and horrible stabbing pains. What I would have described as just IBS episodes and what was originally what I thought it was when I went to the doctor for the first time in Oct. Other times I just wrote it off as just bad luck. 

Throughout the months I've undergone blood work, endoscopy and colonoscopy, genetic tests and diet options. Surely all this would give me an answer! Alas I'm still just as lost and frustrated as before I even came in. 

Let me break down the results:

Blood work came back incredibly high for Ttg Igg. Negative for all else, ttg iga, Ema, the other dpg iga and igg. (I will come back to this in a minute). 

Endoscopy reports increased intraepithelial lymphocytes, normal villous architecture. No signs of h pylori or other gastrointestinal bacteria out of the ordinary. Latent gastritis. 

Genetic test comes back positive for DQ2.2 (and DQ8.1 for what it's worth.)

Colonoscopy I had some polyps that needed to be removed but quite irrelevant to any celiac (to my knowledge). 

After I had my endoscopy and colonscopy, I thought that maybe the polyps were the issue and okay good to go. I had a horrible episode which left me lying in the floor for half an hour in pain, sweating, bloating etc. I knew that I needed to make a dietary change or something that I could have control over, so I tried low fodmaps. 

Did that for the time allotted and went into the reintroduction phase with little issue. Only problems I had with a food group was gluten. So here I felt like going gluten free would be the best option. At this point I had already gone under endoscopy and had blood work twice. The first blood work I had was the full celiac panel, as mentioned before ttg igg was so off the charts, dpg iga and igg was fairly median, and ttg iga was really low with Ema low. When I told my PCD that I was starting low fodmap (I had been low fodmap for three or four days and was still trying to figure out what I couldn't eat) she ran another celiac panel. I had been off everything including gluten, and the panel came back very low now for dpg igg and iga, still pretty low for ttg iga, neg for Ema and still pretty high for ttg igg. 

Anyway, I stuck to the gluten free diet for a month and had some major withdrawal. Depression, anxiety, sickness, you name it. But about two weeks after I felt like I had seen the sun for the first time in decades. My physical fitness is better, I have not had an episode since I started the gluten free (two months total while writing this) and I have (what I assumed to just be female scatter brain) no brain fog. I am shocked at how going gluten free has changed me, I'm literally a new person and I haven't felt this good in along time. Mentally, Im so much healthier. 

So after being on the gluten-free diet for a month, I went back to the GI doc who did my endoscopy and told him what I had experienced. At this point because I had such a positive reaction to gluten-free, I was considering a gluten intolerance or celiac. I pointed out my lab work (which he seemed to overlook preciously because he actuary had to leave the room and go look at my results again) and came to the conclusion that he felt it was the early stages of celiac (he called it subclinical celiac). I asked for a genetic test because both my parents have food intolerances but we are a family that really never goes to the doctor, we just suck it up and chalk it up to a bad meal. 

I came back positive for the DQ2.2 and DQ8.1, but when the GI called me, he was so quick to write me off that I was negative on genetic tests, it was not until I went to physically collect my results to read myself that I realized I came back positive. So needless to say I was upset because I've done enough research to know that while it is not the most common, the DQB1*02:02 and others that make up that positive genetics are still important. This has left me so angry because it's a Rollercoaster of "am I diagnosed, am I not?" the GI doctor overthe phone said still possibly celiac so check up in a year. A Year! For not a "no" but a still possible! 

I should be satisfied to know that my symptoms have cleared and I feel so much healthier on gluten-free, but it's just feeling lost again. 

To add, I have been diagnosed on and off as anemic through my life, since my IGAs were so low, my PCD and I were looking into an Iga deficiency, but I haven't been confirmed that, not sure how I would. I have plenty of symptoms of that, to include annually in high school and college getting pneumonia (bacterial and viral), strep (skin rash included), bronchitis, etc. To the point I almost had to get a pneumonia shot at age 20! 

So I guess what I'm looking for is feedback and the comfort of knowing I'm not the only possibly kinda sorta maybe celiac out there that just can't get a straight forward answer. I hate to go on about it to my family because they are so sweet and supportive, but they really just don't understand even if they try. 

Hi, I am new to the group as I just discovered you all a week or ago.  I, too, suffered many years and was diagnosed with all but what was truly going on.  Finally, my primary care doctor referred me to a new gastro doc and upon doing an endoscopic biopsy, I was diagnosed with celiac Sprue as they called it.  They then, ordered the blood test.  Was told this was the backwards way of doing things, but meanwhile, the minute I heard "celiac", I went gluten free.  The blood test day arrived and it showed no signs....little did I know then and no one told me til my primary care doc, that once you start eating gluten free, the blood test will not show celiac!!  So, I told my gastro doctor and they just said "hmmm, well ok, if you feel better, stay with it".  Nice, I thought...they really care.  Anyhow, it has been almost a year gluten free and I am a world of better.  I suffered much of what you described and that is now all in the past.  My primary care doc has definitely put in my records that I am absolute celiac.  I felt so alone and when I found you all, I am so happy to share and read everyones experiences and thoughts.  Why are things so tough for doctors to find now?  I guess there is just so much out there.  Stay on your way of life now.....you are far healthier all the way around for it.  Best of luck!

[squirmingitch]

bmarsh28, Oh my goodness, if we had a penny for every time what happened to you has happened to someone else, I swear we'd be rich! Obviously gluten is a major problem for you so consider yourself celiac & stay off it. I feel more like you are celiac or pre-celiac than NCGI. There are actually other genes associated with celiac but it's rather rare. We have a couple people on here though who do not have the genes they claim are THE celiac genes yet these people were dx'd by blood as well as endoscopy. There is still much research yet to be done on celiac disease. It is officially estimated that 1 in 100 people has celiac disease but 80% of them are undiagnosed. You are a perfect example of why. If not for Anitamarie's Primary Care Doc realizing how she got screwed up by the backwards system used to test her & going ahead & giving her a dx of celiac then she would be yet another "undiagnosed celiac". Then there are those who never have a clue their problems are celiac b/c no one ever thought to test them & the entire world seems to think if you don't have raging diarrhea 24 hours a day then you are not celiac which is just so wrong!