I had this done yesterday at my hospital. I had the four hour nuclear scan. I ate some egg whites after fasting for 12 hours. They rearranged the time so I could start at 12 pm because I’m nocturnal fortunately.
Then I was scanned while standing in front of a flat panel machine- the first one right after eating, then every hour for two hours and then the last one 2 hours later.
It was pretty hard because I wasn’t allowed to eat of course and I was pretty hungry towards the end, fortunately my bg didn’t crash and stayed at 150’s-160’s the whole time. I was afraid to correct it lower in case of lows. I was allowed to drink two glasses of water , one with the egg whites and one later and they said some juice/glucose tabs was ok in case of lows.
When I ate the egg whites I had to wear gloves to avoid contaminating things with radiation. The tech also gave me a label saying I had the test done in case the radiation set off any scanners! I have to say even though I know this is very low dose this made me nervous. I was even going to cancel the test when I woke up, but my father convinced me it is completely safe, it’s very low dose and will not cause cancer etc.
I don’t have my results yet, they should be online tomorrow. I’m just wondering how accurate this test is? I have IBS and my digestive issues vary a lot from very bad to more normal with constipation/runs etc.
Since right before I was in the hospital things are much worse though and I have noticed I have bloating now when I eat and feel very full with some stomach pain and nausea. I had that last night especially after my dinner and I wonder if that is from the test/radiation? I was constipated the whole day pretty much and then for about 24 hours until today so that probably means the radiation stayed in me longer. When I ate the egg whites I did feel that they went through my system but I guess it’s hard to tell for sure. I noticed a slight rise in bg but I had also turned off my basal for 2 15 minute periods due to feeling I was going to crash.
I’m wondering if this will accurately diagnose any problems because it can vary so much from day to day. I’m kind of dubious about the whole thing- I read some people’s comments last night that they have had different scans where the result was normal on one and abnormal on another.
Gastroparesis is notorious for being hard to get a clinical diagnosis. Some days are good some are bad. So the emptying scan really depends on if you are having a flare or not.
Also there is more to gastroparesis than just stomach emptying. It can affect the entire stomach and not just emptying. So the nausea you experience may or may not be related to emptying.
I think you have been checked for celiac disease, but did you get the entire panel or just the screening which comprises of just the TTG IgA and an IgA deficiency test? I ask, because test negative to the TTG IgA and TTG IgG tests even in follow-up testing. I tested positive only to the DGP IgA yet biopsies revealed moderate to severe intestinal damage. The screening test catches most celiacs, but not all.
The GES is just one measure that can help diagnose gastroparesis. Unfortunately, it can vary from time to time and does not always accurately depict the overall situation. It is simply a snapshot in time. Your GI can also help determine GP from an upper endoscopy and discussion of symptoms. Early satiety, bloating, nausea, and pain are all symptoms.
Yes I have been cyclinglady. I was tested years ago negative I was still eating gluten then and then tested about 3 years ago I think but I was not eating gluten for 4 months or so then, again negative.
I only had one or two tests I can’t remember which ones now. I asked the np I saw about this and about another test- she said an upper endoscopy/biopsy will show if I have it. I looked up the tests again and asked if they would do the other one, maybe one of the ones you mentioned here, I’ve got them all muddled up again, and she said there is no need because the endoscopy will show it… what do you think? I have to ask the doctor about this when I see her either at the endoscopy or an appointment. I will ask about Dgp Iga I can’t remember if I had that one.
I have lost about 14 pounds in 3-4 months maybe and I also have osteoporosis now and other things going on which could indicate celiac, but if I do have it it’s odd that it seems to have gotten worse after stopping gluten. I did eat some by accident in the hospital and my stomach etc. seemed to get worse at that point. I definitely have some sort of gluten sensitivity or wheat sensitivity and to some other grains too. My family eats gluten so I guess I could be getting some cross contamination too.
I’m having an upper endoscopy next week so hopefully that will show if there is something going on with celiac or gp maybe. I’m not looking forward to it but I know I will be totally knocked out this time.
Unfortunately, you have to be consuming gluten at the time of ALL tests to insure an accurate result. The blood tests require 8 to 12 weeks of daily gluten (about 1 to 2 slices of bread or equivalent) and the endoscopy/biopsies require 2 to 4 weeks. (Source: University of Chicago, Celiac website). If you have been gluten free or light, you will need to consider a gluten challenge based on your current health issues (talk to your GI who should be celiac-savvy). Make sure 4 to 6 biopsies are taken if you do the gluten challenge.
It sounds like you did not get a complete celiac panel years ago. To suggest another celiac blood test while gluten (even a screening TTg), tells me that your NP is not celiac-savvy and is not following standard American GI Association’s recommendations. The U of Chicago used to recommend just the screening test, but now has recently added all the celiac-related antibody tests most likely because they were not catching all celiacs (like me). I would strongly recommend maintaining all your lab results in the future.
Cross contamination is a huge issue for celiacs. It sounds like you were never truly gluten free but only gluten light.
It is incredibly easy to encounter cross-contamination if there is any gluten in your home. Being gluten-free is similar to being glatt kosher in that you pretty much need two separate kitchens. But if this is not an option (unless you have more money than I or just about everyone I know has), you definitely need two different sets of plates, flatware, all cooking utensils including pots and pans, cutting boards, etc.
If you are sharing kitchen equipment with them, then unless you are sterilizing things in between uses and avoiding things made of wood or other materials that can absorb foods, you’re almost definitely being exposed to wheat/gluten through cross contamination. Also, many “gluten free” (which has unfortunately become a fad label) products are exposed to cross contamination if they’re not produced in a dedicated gluten-free facility. (Ditto for “dairy free” and “vegan” items, if you’re also avoiding milk.)
When I was first diagnosed with eosinophilic esophagitis and told to avoid wheat and dairy, since I thought the allergies weren’t super severe (not anaphylaxis) I tried at first gong “mostly free” and not worrying about cross contamination. I ended up getting more and more sick and I thought I was becoming allergic to essentially everything because I’d react so often. I decided to try going really strictly wheat and dairy free, and it made a huge difference to my health. So even those small, invisible traces can make a big difference if your immune system is freaking out over these things.
I hope you get some answers with the endoscopy. I know how horrible and unpleasant having daily stomach issues can be.
Thanks CC, I don’t know what to do because I don’t want to eat guten for the test. I asked the np about the new test in australia which doesn’t require eating gluten, @Pastelpainter posted about that a few months ago I think? But I can’t find anything about that online. I can only find one that says you have to eat gluten for 3 days. I could try that I guess although with my stomach the way it is now I’m not sure if I want to do that.
The NP didn’t suggest testing while Im gluten free, I asked about the testing. She just said the endoscopy will show that. I didn’t realize you have to eat gluten for that too. But since I’m having all of these symptoms now and I have been gluten lite, doesn’t that suggest an endoscopy will show something? Because I wouldn’t be this symptomatic if it is celiac most likely causing all of this, unless there is some other primary cause.
I will try to speak to the doc but at the medicine groups I go to at my hospital it is nearly impossible to talk to and especially to see to your doctor without scheduling 3 months in advance, they use np very heavily. I even have to have a huge deal to get an early appointment with an np at the gastro clinic.
If I have damage enough to cause symptoms won’t that show up in abiopsy? I don’t really want to reschedule this, I just want to get it over with. I can’t do this during the teaching semester and this is the perfect time for me. I also can’t wait around with all of these symptoms and terrible bg either until september which was the original appointment they were going to give me. I’m not scheduled to see the doctor for 3 months! But I’ll see her at the endoscopy.
I don’t know what to do about cross contamination, obviously if I am truly celiac I will have to do something. My life is already a nightmare as it is now. I’m so exhausted dealing with all of the medical professionals too. I just don’t have the energy to navigate all of this anymore and feel like some of them think I’m crazy at times. I may have to go to an outside gastro doc but they will probably just say the same thing about the testing. Maybe I celiac center if there is one near me? Getting my endo to do or to test me for anything is a nightmare each time.
Thanks Jen, I hope I get some answers. I don’t know how I’m going to manage it if I am celiac, the cross contamination at home. The things I eat like rx bars are labeled gluten free with that stamp so I think they are ok. Otherwise I eat whole foods that I think aren’t cross contaminated etc. I I still eat dairy but not much, just some cream in my tea, cheese and now some yogurt. But I eliminated the cheese pretty much due to lowering fat content. I did have a very high eosinophil count when I was hospitalized and the week after too so something may be going on allergy wise. Nothing except grass allergies ever shows up when I do testing though so I’ve given up on that.
I’m wondering if I could have an adrenal problem due to my other symptoms.
As bad as intestinal issues are I would gladly go back to just having IBS for that I just lay down for a while or take some immodium etc. It is an invasion on your life and stops you from doing things but it’s nothing, at least for me, compared to all of this.
I wash the dishes on a sterilizing cycle. I guess I would have to stop washing/using any dishes washed in the sink and rearrange the kitchen and make a separate cupboard for my dishes only. It’s not going to be easy for sure. If I don’t test positive for it which looks like I won’t due to not eating enough gluten. Getting my family to do anything is going to be maybe impossible. I can’t get my father to close the catfood bag properly
If you have a dishwasher and use the sterilizing cycle, that will get rid of any cross contamination. It’s only certain things (pots and pans that can’t go through the dishwasher, shared toasters, wooden cutting boards) that can’t be shared if someone is trying to avoid cross contamination.
Meee, I had surgery for a bowel blockage a few weeks ago. which changed the way my gut acts. I can only eat small amounts of food at a time, and need to eat 4-6 times daily. A morning meal/snack is a slice of Udi’s GF toast with an over-easy egg on it . It actually isn’t bad!
GI symptoms can notoriously overlap. I have mild gastroparesis that rears its ugly head from time to time, but I also for several years had gallbladder symptoms that were very similar in nature to my gastroparesis symptoms. I also have IBS, which causes me similar symptoms. Having my gallbladder out though has lessened a lot of the symptoms I was having.
I have to say even though I know this is very low dose this made me nervous. I was even going to cancel the test when I woke up, but my father convinced me it is completely safe, it’s very low dose and will not cause cancer etc.