cardine45

I'm trying to find other members that are near the Kalamazoo/Western Michigan area. I tried a few different ways of searching, but I haven't had any luck with it except finding previous posts they've left. When I do that, I can't find any way to private message them. Am I doing something wrong or is there a way to do this that I'm not finding? Any tips would be appreciated.

Thanks for the reply. I haven't gotten the results back yet, but they were able to tell me that they found and removed 7 polyps which don't look to be abnormal from what they could tell right away. They also could only get the scope in about half-way because there was an area that they described as very "tight" and they couldn't go any further. I have a barium swallow study (I think with a CT scan) for next Friday so they can see if there are any other areas like this and to see if they can figure out how big the area is and why it's constricted. I'm not looking forward to having another all-liquid diet day, but I guess I should get used to this because it sounds like I'll be having a lot more tests before this is over.

  snowbunnyok15 said:

Hello Everyone.

Yesterday morning I had some oatmeal and low carb wheat bread as I am working out with a trainer and losing weight, well more weight. My doctor calls me to give me the pathology results of my colonoscopy and endoscopy a couple weeks ago. She begins to tell me that in the small intestine the biopsy came back as I had a gluten intolerance. I said a what? She says, you can't eat anything with wheat, stuff like that.

Upon telling my mother she has a co-worker who has celiac disease and gave me the address to this site. I knew nothing about it really until a little over 24 hours ago. Anything I need to know Id appreaciate anyone telling me. I've been reading and reading it just all seems so overwhelming.

Even though this is a pain in the neck, I am very thankful for knowing I'm not crazy. The doctors made me feel stupid putting me on medications, nothing worked and making me feel like I was making all of this up. Different problems that made no sense. Then I finally found a "good" doctor. Who sent me to a specialist to find out the "problem" versus just giving me another pill that just wouldn't work. So, I'm very thankful that I know what's wrong with me. I just have no idea everything I must know.

Thanks for taking the time to read this...

Michelle

Claremore, Ok

My best suggestion for you when first going gluten-free is to do everything really bland and start with meats, veggies, and fruits. I just started the gluten-free diet about 2 1/2 weeks ago, and I'm so scared to mess up that I don't care that my food isn't incredibly flavorful. Until you do research on the best ways to find the "hidden gluten," it's easier just to avoid anything that might have gluten in it.

Be prepared to spend a lot of time making your own food. Also be prepared to be VERY frustrated when you do your first shopping trips. I would suggest sticking with the above mentioned items because I tried reading labels on my first shopping trip, and I almost walked out of the store in tears because I didn't know what items were actually safe. If you're interested in an item, start making a list of the product and manufacturer and do a quick google search when you get home. I typically search something similar to "gluten-free kraft." Most larger companies have some type of information on their websites, and otherwise you can find some other good resources through on-line product lists.

No one will claim it's easy, especially at first, and I'm definitely no expert, but I wish someone would have given me this same advice when I first started.

One last thing, if you choose to go out to eat, either be prepared to be VERY specific about what you can and cannot have, or at least make sure that they do things such as clean the grill and utensils before they make your steak (just an example) and that they don't put any spices on it. Also remember something as simple as a hamburger could have fillers in it to make it more flavorful, so actual pieces of meat are safer.

I thought I'd take today to introduce myself as I'm off work for prep for my colonoscopy tomorrow. I was first told by my doctor that he was almost positive I had celiac before even running any tests due to the array of symptoms I have. I know I should be asking more questions and getting more concrete answers from him, but the whole thing is so overwhelming and frustrating. I know from research that there are a variety of blood panels they can do, and I have no idea what ones he ran, but he said the tests came back negative. But he also said that he still thinks I have it, and he told me I could choose to go gluten free whenever I wanted. My Vitamin D and B12 levels were incredibly low, but he didn't test for hemoglobin/iron and had to draw more blood for it at my second appointment.

Sorry my thoughts aren't incredibly organized, I guess everything just hit me today because I haven't had time to sit down and think about it until now. I heard the doctor say the test came back negative, but he also said it was still likely that I have it, and it felt so good to have finally figured out what's wrong.

Now I want other people's advice, especially if they're from the Kalamazoo/Southwest Michigan area. My stomach issues started around the time I was in high school (I'm 26 now). I've always been scared to death being somewhere that I can't get to a bathroom quickly, especially if it's unfamiliar surroundings or if I'm driving on a road that I'm not familiar with where I can stop. My stomach issues pertain mainly to severe stomach cramping and chronic diarrea (recently up to 6-12 times per day). I recently started having breathing problems with a swelling of the throat feeling and severe tightening of the chest like someone was sitting on my chest. I also had a period of 2 weeks that I was getting severe chest pains under my left breast typically in the middle of the night. I could only breath shallowly and I couldn't move when I was having the chest pains. For a period of 4 months this winter, I constantly had a canker sore somewhere in my mouth, and I recently had one root canal done, and I'm waiting on 3 more with 4 more cavities to fill beyond that. I'm constantly tired, and I'm exhausted if I don't manage to get at least 10 hours of sleep each night. Lately if I try to walk my dogs the normal mile and a half walk that I take them on, my muscles in my legs will ache like I went on a 20 mile run for at least 3 or 4 days. Rarely do I have the energy to do that, so I'm not exactly in shape, but I don't think that that kind of pain is normal. My skin is also beyond dry, and if I don't want it constantly flaking off, I have to put on lotion at least twice a day. If I wear a black shirt, the inside is seriously almost completely white from the skin that came off throughout the day.

I have no idea if all of these symptoms are caused by celiac, though I've read the majority of them can be caused by celiac. I'd appreciate anyone's input on this.

I started the gluten free diet about 2 weeks ago, and I don't expect immediate results, and although I've referred to myself as feeling a million times better, I still have a long way to go to feel normal. Rather than running to the bathroom every single day multiple multiple times, I've been having more occasional bouts, typically on Mondays so far (2 weeks isn't much to go on though).

Ok, I think I'm done now. I need to get my dogs outside and run some errands before I start the colonoscopy prep at 3pm. I didn't ask a lot of questions about why I'm doing the colonoscopy, and I know normally they would do an endoscopy, but I feel better about making sure there aren't any other issues that they might be able to find. I also know they can't do a confirmatory diagnosis after you go gluten-free, and despite the negative blood panel, I wouldn't mind getting something concrete though I will continue gluten-free if it continues helping. (I already have a little more energy)

Ok, really done now. I needed that time to ramble.