anxious about all of this

[ironictruth 57]

Hello, I have the DQ2 gene, sibling with biopsy confirmed celiac and most likely a father with it. All my lab work was normal except a slightly elevated DGP IGA twice now. During the 2nd lab draw I was gluten free for 4 weeks after a 6 week challenge and gluten free 8 months prior. I was pretty gluten light for a few years beforehand. My biopsy in January came back negative. Unfortunately, my GI "forgot" to order the bloodwork for a month after telling me to go gluten-free. We went ahead and drew it for the heck of it. He also did not order the EMA. In fact, he also kept telling me the gliadin test is confusing at which point I realized he did not know the test had been replaced 10 years ago with the deamidated test.  In his defense, when I showed him new articles on it he ordered the test and was very gracious, not a know-it-all jerk. I actually think I will keep him despite my primary care asking if I wanted another GI because he is receptive. This day in age you have to both have a MD from a university and another degree from Google Medical University to keep up with your patients. Plus a personal life! So any doc who looks at something on my phone, takes it seriously and orders the lab is good with me. 

So I embarked on yet a 2nd gluten challenge to prep for bloodwork because I read you should do 12 weeks before bloodwork if you were gluten-free before and I did 6 weeks and 4 weeks off before the blood draw. 

I feel horrible. Much worse then the first time. Toward the end of the 6 weeks I started to get chest pain, tons of indigestion and trouble with my bowels in the mornings. It lasted 2 weeks past and then cleared up before I jumped into my 2nd gluten challenge. I am only 10 days in and my bowels are ok but I immediately got a spike in BP, swollen glands, sinus stuff, dizziness, back and neck pain, shooting pain in my neck to my ear,short temper, feelings like my vision might change and I might pass out. My son, boyfriend and dear mother have spent time with me and no one else is sick.

I am being proactive and getting cardio tests done because I am pretty freaked out. Once the biopsy came back negative I thought, "what the hell is wrong with me?" My heartrate goes from 50-60 bpm at rest to 80-90. I have had trips to the ER, starting to feel like a hypo who is a burden on those close to me which makes me want to shut down. It is hard to focus at work too. I really have to fake it.

A decade ago I had a bunch of visual changes that resulted in months of ill feelings and eye floaters started up then which never went away. I was also anxious about that because my sister has MS. But eventually, except the floaters, I started to feel better and I figured it had not killed me so I could chill. Plus, the floaters are sort of my driving buddies now (:

Since I am ranting my crazy here, I should also mention my frustration with docs, though I understand they are not god and cannot know everything, I just get annoyed with the ones who think they are god. My first pregnancy in 1997 was plagued by hours of upper GI pain and trips to the ER. I was told I could not handle labor if I was having trouble with false labor. He was 9lbs 14 oz. The delivery was fine. The 13 gallstones and infected bile duct was not! Nor was my second delivery, where I insisted I was YES, in fact in labor and wanted an epidural when my body shook. They said I was not and the epidural would slow it down. In 40 minutes my dear son, 9lbs 8oz  got stuck behind my pelvis and you can only imagine what had to be done to get him out with no epidural. 

Anyway, I guess I am just wondering, has anyone else had any of the above mentioned symptoms which improved on a gluten-free diet? As I said, I am trying to rule other stuff out, I hate to blame all this on 2 mildly elevated tests. The DGP tests are supposed to be great, but they really only have been around for 10 years, not a lot of time to know. 

Yes yes, I could again go gluten-free for a few months and see how I feel. But I hate to assume. I love my sibling who has confirmed celiac but we sort of joke in my family that he could be in the middle of a heart attack yelling out "it must be the gluten!!!!" 

[cyclinglady 1,592]

Welcome!

I just wanted you to know that I only have tested mildly positive to the DGP IgA (even on follow-up testing) and was negative on all the rest, yet I had Marsh Stage IIIB  damage per my biopsies.  My visual on the endoscopy was normal.  The small intestine is vast (size of a tennis court) and even experts like Dr. Joseph Murray (Mayo Clinc) have admitted that it is easy to miss damaged patches.

http://well.blogs.nytimes.com/2014/09/29/celiac-disease-diagnosis-gluten/?_r=0

i am not sure your GI followed current procedures and took a minimum of four to six  samples at the appropriate places.  Do you have copies from the pathologist?  Who diagnosed your brother?  Maybe you should think about a new GI who is celiac savvy.  I am concerned about your cardiac issues.  Is a challenge worth it?  You have the positives on the blood test (just need one positive).  I am assuming you are just doing the challenge for another biopsy?  In that case, four weeks is the time needed.  Some are recommending two weeks, but since you have one negative biopsy, I would go the extra mile as long as your heart can take it.  

Good lucK !

 

[ironictruth 57]

Thank you, they did take 8 biopsies of the same area, duodendum . I do have a copy. Not sure who dx my brother but he had high Marsh scores. Anemic as a kid, etc. Very reactive if he gets cross contaminated. His blood work was always negative though which was puzzling. He has a gene and so does his son. 

At this point, I do not even care about the biopsy. I figure that only comes back positive if your gut is totally destroyed. I guess I am just thinking if the bloodwork goes up, I have the gene, I am lucky to catch it early. I guess you should be eating gluten for 12 weeks for bloodwork. But I hate to assume all of this is due to early celiac with just 2 weak blood tests. 

Thanks for the support! My brother and primary care both think I should just go gluten free and see if I feel better. Guess I just feel "unresolved" and hate to give up a normal dietary life on such weak evidence.