Celiac Suicide Mission For A Positive Endoscopy Result?

[JenniBea]

Hi people!! I'm currently going through the motions to get a solid celiac diagnosis so I can start with the gluten-free diet that I am actually looking forward to by now.

Just after christmas I went on a diet, like many do. Nothing serious, just less chocolate, chrisps, pasta and white bread. Lost the few pounds I had gained and all was good. Went back to eating missed food, (but less than before to not gain unwanted pounds back!!) and started vomiting. A couple of times a week, and feeling really tired. I have a history of unexplained anemia and the symptoms I was experiencing were a dead ringer. Went for a blood test, came back b12 deficient. Which was odd because without much bread and pasta recently I have being into meat eggs and dairy instead. Was to go back for a re-test in a months time. Fair do's...? During this month I started playing around to try finding out what was making me sick then. Bread....barf. Sausage...barf. Bacon....fine. Egg....fine. Gravy....barf. Cake....barf. Pasta....barf. Salad....fine. Common denominator to my conclusion....? It's wheat that's trying to kill me! Feeling like I was onto something I ordered a celiac home testing kit off the Internet and it came back positive. My months wait was at an end now and I was go go back for my b12 blood test. I told the nurse about this and she (with doctors permission) sent off blood to test for celiac. 3 days later I was back at the doctors to start a life-long corse of b12 injections because my b12 was lower than before. Eventhough I have been eating b12 rich foods more once I realised it was not going to make me sick. Anyway, doctor has ordered an endoscopy for me and said it will take a few weeks for an appointment to come through. I decided to have a few days off gluten at that point and felt great for it, but knowing I have to continue eating wheat until I get an official diagnosis, I would kick off most days with toast or cereal, followed by barfing, then cracking on with a gluten-free-ish day. Gluten-light I guess. I figured I would have plenty of notice for my endoscopy and would gluten up properly when I had a date to go on. Told my friend about this and she got straight on the phone. Came off and said "your appointment is in two weeks." Her mum works at the local hospital sorting appointments out. So, I have 2 weeks. If I crack on with as much gluten as I can everyday until appointment, and I am willing, could the endoscopy work in my favour? I have not been strictly 'gluten-free', but have had a few days off here and there due to being sick of being sick! And also, I vomit every single time I eat gluten...will this actually leave enough gluten in my body to cause damage to my intestine? Thank-you for taking the time to read this essay!!

[MitziG]

Well...it is iffy. But my gosh girl, if the constant barfing doesn't clue your doctor into the fact that gluten is a problem, he needs his license taken away.

I began my celiac career at age 3 as a barfer. same story. Take away way wheat, stop barfing. Enter puberty, wheat no longer = barfing, so I'm cured, right?

Enter adulthood, spend the next 20 years randomly barfing, seemingly unconnected to what I eat. Guess what "came back"?

Now, I eat gluten, I barf. Welcome to the club.

[Skylark]

You are celiac. You have a positive blood test, violent reactions to wheat, and obvious malabsorption. If you want to tough it out for the scope it's fine but will the scope results really change your need for a 100% gluten-free diet?

[GFinDC]

Hopefully you are writing down a food log every day of your symptoms and what you ate. Your doctor should be able to read that and figure out something. What do you hope to gain by the endoscopy? There is no gold star for having your celiac endoscopically verified. The treatment is the same, follow the gluten-free diet. The usual recommendation is to be eating gluten for 3 full months before an endoscopy and biopsy for a good chance of detecting enough gut damage for them to see it. That is not a guaranteed thing though, you can still have a falsely negative result. As long as you are doing an endoscopy you may want to do a colonoscopy also, just to cover both ends as they say. Colonoscopy won't detect celiac but might be good for prevention type stuff

Some countries have a medical coverage for gluten-free foods, but I am not sure if it is worth anything. You can also more likely participate in gluten-free / celaic disease studies or research of you are endoscopically verified. For some people that is important.

[JenniBea]

Thank-you SkyLark, I'm pretty certain of what is going on here, and will be adopting a full-time gluten-free diet regardless of endoscopy results. I know my body quite well by now!! Just seeing it in black and white will be confirmation. Also I have two toddlers, and if I know for certain that I have it, then I know for certain that they are with higher risk, and will be able to pick up on symptoms/reactions should they need me to and could save them the trouble of all this poking and prodding, if I feel it's right for them at the time.

I'm not looking for a gold star GFinDC, just peace of mind. I am well aware of how difficult it is to diagnose, and I have had an endoscopy before to look for reasons to being so anemic I had to have a blood transfusion for a few years back, but I'm I'm wanting diagnosing properly. Also, here in England you do get gluten-free food on prescription after official diagnosis, which is quite expensive. Especially if it does turn out in the future that my children also need gluten-free diets.

[JenniBea]

.....and yes, my doctor has been given a long list of the same reactions to different foods, along with a long list of other symptoms that I thought I'd spare you with. It's not just barfing a being a little bit sleepy, hence the endoscopy being ordered. There is obviously something going on in there.

[GFinDC]

Sorry Jenni, I wasn't trying to be negative with the gold star comment. I know about the food reimbursement in England. It's perfectly ok to get the endoscopy if you want it. Sometimes doctors ask people to go back on gluten for 3 months after being off it to do the endoscopy. That's kind of barbaric IMHO. Some schools do make accomodations for children and that might be easier to get if they are diagnosed, not sure tho. There are some users on the forum from England, hopefully they can help with more info on how the food program works.