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quakenbake added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsIs This Crazy?Hello, this is actually my second post here (my first was just a general "Does this sound like Celiac?"), and now I'm in the middle of being tested and such. Before I went in to the doctor, I ended up going gluten free because I was in the middle of college finals as well as participating in a friend's wedding. It was only 4 or 5 days, and I was back on gluten as soon as that was all over. It's been 2 weeks since I've fully been back on the gluten. Since going back on the gluten, I have been very ill, so ill in fact that I just can't handle 3 gluten filled meals a day- I eat gluten free once a day just for my own sanity. I should add that I'm not being extra careful or anything to avoid cross contamination since I'm supposed to be back on gluten. Anyways, this brings me to why I'm posting.
After getting incredibly sick after breakfast and lunch, I had some Annie's gluten-free macaroni and cheese for dinner last night. My stomach started cramping afterward, which I thought was peculiar. That had never happened after eating any gluten free meal the past 3 weeks. I had a glass of milk this morning with my gluten free meal of the day, same thing except much worse. My stomach and abdomen are cramping quite painfully. I know a lot of Celiacs have problems with lactose, which is what got me thinking. It seems very sudden, however, that I should be having problems with it now after never having issues with milk before (one of the very first potential diagnoses was lactose intolerance, and cutting out milk seemed to do nothing). Can problems with lactose develop in a matter of weeks? Have I lost my mind, or is it just possible cross contamination because I'm not being careful?
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quakenbake added a blog entry in Coeliac, or just plain unlucky?Update: The Big Day- First Trip To The GastroenterologistThe doctor's visit went really well, I think. I am so thankful to have the GP that I do and that I am in Houston right now with some really amazing medical care. My GP sent me to an absolutely wonderful specialist who's been in the field for 40 years, I believe, and seemed incredibly knowledgeable, friendly, and helpful. He didn't want to say I had Celiac/Coeliac just yet, which I can certainly understand and respect since I haven't had any tests yet (although part of me was kind of hoping for an instant diagnosis). He did, however, acknowledge that something was indeed very wrong. He wants to see all of my scans, tests, etc. that I've had over the past year or so. He's hoping that maybe one of the many CT scans I've had will show something- he said a CT scan is like a computer, a good one can do a lot and really tell you all kinds of things. I have to make calls to Canada, Florida, and to hospitals here in Houston (I should really not travel so much) to get the information I need, but it will be worth it. On top of that, he has ordered a full blood screening, including genetic testing, for both Celiac/Coeliac and for IBD.
I'm still really hoping for the Celiac/Coeliac- it seems so much easier to cope with than something like Crohn's. I'm not sure if my symptoms really fit any of the inflammatory bowel diseases anyways, but better safe than sorry. He also looked at my hypoglycemia (which I had been treating as a disease itself due to the large amounts of diabetes on both sides of my family) and the fatigue that I had associated with it (apparently that wasn't right) as symptoms of something bigger. He said that people naturally had hypoglycemic tendencies, but the fact that mine was so severe was most certainly because something else was causing it. Same with the fatigue- low blood sugar should only cause the shakes and general woozy feeling, not make you this tired. He certainly seemed interested in the fact that my stomach cramping and such stopped with the gluten-free diet during the 4-5 days, so hopefully that's a good sign. I can't believe I'm saying that Celiac/Coeliac is a good thing, but I would be so relieved if that's what it was (it could explain everything as far as I can tell).
The other tests! I almost forgot about all of that. I was originally scheduled to go in to see the doctor for my consultation January 3rd, but due to a cancellation, I was able to get in today. Due to some other miracle cancellation, I am able to get in for my endoscopic biopsy NEXT WEEK. Talk about lucky or some sort of Christmas miracle. It does seem silly to be praying for something like Celiac/Coeliac, but words cannot express how much I wish that's what it turns out to be. I've already scoped out gluten-free restaurants and bakeries in all of the cities I tend to haunt. I'll be going back to eating gluten-free right after my biopsy since I did start to feel so much better last week. I will probably eat gluten-free regardless of what the tests say, to be honest. Let's just hope that since everything is happening so quickly and smoothly right now that it's a sign of good news and good health to come.
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quakenbake added a blog entry in Coeliac, or just plain unlucky?The Big Day- First Trip To The GastroenterologistHere it is- the big day, or at least it is in my opinion. I am hopeful that after years of trying to figure out what's wrong with me, I might finally have an answer. Not only would it be an answer, but it could explain all sorts of those little random things that you don't think matter or could be connected to anything. I wasn't supposed to get in until the first week of January, but I had to call last week after not being able to eat for 2 days to see if they could please call if and when they got any cancellations. I suppose I got lucky, but now I'm very anxious to see what he has to say. After having done a fair amount of research, I can't tell you enough how hopeful I am that this is it. This is a list of pretty much everything I've ever had wrong with me and I have found some sort of connection to Coeliac (plus this will help me know exactly what to tell the doctor in a few hours):
-have been "diagnosed" with IBS and GERD
-fairly constant nausea (I'd say a good 90-95% of the time)
-heartburn requiring prescription medication
-stomach aches where I break out into a cold sweat, start shaking uncontrollably, and feel like I'm going to vomit (although I very rarely do)
-inability to have a BM (chronic C), and when I do, I don't think it's very healthy
-sharp pains in my abdomen (typically on the right side), sometimes so bad that I can't get out of bed
-for the past year or so, I've had bouts each month where I vomit for a day, then have the big D for the next couple days, then I have the abdominal pain so badly that I cannot move for what seems like weeks at a time
-I can't maintain my weight (I jump from anywhere between 105-130lbs. and I should be 115-120lbs.)
-fatigue (I can sleep for 10-13 hours and feel like I haven't gotten any sleep at all, and not just in an oversleeping kind of way) and I just look tired (I have dark circles under my eyes that make it look like I've been punched)
-I'm either starving or I can't put anything in my mouth without feeling like I'm going to be sick
-when I was a baby, I had horrible colic and needed to be put on a predigested formula
-when I was in high school, I had to have 2 surgeries for chronic sinusitis
-for the past year or so, I seem to be breaking out in a red, lacy rash (sometimes with bumps) randomly, similar to an allergic reaction
-I have had problems with depression and anxiety for the past 2 years
-I get dark spots on my teeth and have had comments from my dentist and orthodontist when I saw him years ago about the enamel on my teeth
-bloating and a general feeling of being full or like there is undigested food in my stomach
-fairly severe and painful abdominal cramping
-pain in my lower back and neck
-my skin has gotten much paler than it had been in high school
-family history of bowel problems
There you have it, probably way more information than you wanted to know. I'm actually having a hard time staying awake while writing this. Oh, something else I should probably add: I was busy with university finals as well as being in a friend's wedding last week. The weekend before, I couldn't eat for a couple days, and when I did, I was very sick to my stomach with the big D (that's when I called my doctor about getting in earlier). I ended up losing 4lbs. over the 2-3 days, which isn't unheard of because of how often and how much my weight fluctuates, but I was at the end of my ropes. Not eating or sleeping because of being so sick does not generally lead to good performances on big tests or standing up at the alter as a bridesmaid. Since I had no idea what else to do, I went gluten free for the few days (I know I'm not supposed to before my tests) to see if that would help me get through the week. It was the first time in I don't know how long that I was able to eat without feeling nauseous or getting stomach cramps. I was only gluten-free for 4-5 days (hopefully not long enough to mess up any tests I'll have in the near future), and have been back on gluten since Sunday. I feel miserable. We'll just have to see how to doctor's appointment goes.
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quakenbake added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsInput?I was just wondering if I could get some input and opinions from people who know a little more than I do. My diagnosis has been a mystery for well over a year now, and probably much longer now that I think about it. My doctor recommended that I go see a gastroenterologist to be tested for Celiac/Coeliac; he called it sprue, but from what I understand that's just an old name for it (he said nothing about Tropical Sprue, which I think is a little different).
Anyways, I guess it might be helpful to see what you think if I list some of my symptoms. For the past year, I've had excruciating abdominal pains on my right side about once a month or so. The pain lasts about two weeks and generally follows a week of vomiting once then not being able to get off the toilet due things as equally unpleasant from other ends. I ended up having a laparoscopy to look for endometriosis, and I just had a cyst. While in there, the doctor also noticed that my intestines were very swollen, alarmingly so actually. I have always gone to the bathroom rather infrequently, so we were thinking it could be IBS.
I started increasing my fiber, did a colon cleanse (one of the ones prescribed before a colonoscopy), and tried to change my diet accordingly to accommodate IBS. I started having problems again, which is what led to my doctor suggesting that I be tested for Celiac. After he said that, I started noticing that most of my symptoms generally occur after I eat. I'd say I'm nauseous at least 95% of the time. I get abdominal cramps and awful heartburn as well. In fact, I had a bowl of grapenuts, thinking it would be good for the IBS, and was in tears later due to the pain in my abdomen. I got the point, again, where I could only eat a little before I'd have to rush off to the bathroom because I felt like I was going to be sick. I've had problems with my stomach all my life (I get these stomach aches where I feel like I'm going to vomit, break out into a cold sweat, and start shaking uncontrollably), so this wasn't unheard of for me to not be able to eat due to stomach aches. My weight is constantly bouncing around from overweight to under (I'm supposed to weigh 115-120, but I can be anywhere from 105-130 and have in the past year).
I started doing more research since a lot of things started to make sense. I was able to start making connections to things I had no idea could be related. I suppose I could just list all of my health issues that I've had, and then since hopefully you know more than I do, you can tell me what exactly is related and what isn't.
I had colic as a baby and needed predigested formula. I was diagnosed with hypoglycemia 5 years ago when I was 15, and over the next two years, I needed two sinus surgeries over the next two years due to chronic sinusitis. I have just about every GI symptom known to man: constipation, diarrhea, nausea, heartburn, vomiting, bloating, gas, cramping, you name it. I have pain in my lower back, and I've started noticing dark spots on my teeth (I generally get comments on my enamel at the dentist's office too). Have I mentioned that I am always exhausted? It doesn't matter if I get 13 hours of sleep- I'm always tired and look like I've been punched under the eyes. My great and great, great grandmothers also both had terrible stomach problems requiring them to take a laxative or have an enema every day, so I could have the hereditary factor, but we are not sure what or why they had problems. I'm only posting all of this because I've heard it can all be related to or caused by Celiac/Coeliac.
Oh, I feel like I should add that for the past 4 or 5 days, I have eaten gluten free because I couldn't eat or sleep, and I had university finals and a friend's wedding to be in this week. I know I am not supposed to before I have my biopsy, but I didn't know of any other way I could try and make it through the week. I had no idea if I'd feel any better, but I just had to try something. I could start to tell an immediate difference because I could eat an entire meal and stop when I got full rather than stopping when my stomach would start to cramp and feel sick. I genuinely have felt better, not completely well, but better than I have in a while. I've gone back to eating gluten again and the heartburn and nausea are back in full force (I had a few bites of bread with dinner that was otherwise gluten free, and this is the first time I've had problems since I started eating gluten free). I don't want to mess up any tests by not eating gluten, and I'm scared I have. I am hoping that since I can't even get into the specialist until the first week of January for a consultation and I only ate gluten free for less than a week that I will be fine for the tests.
Since I feel so sick after just a few bites of bread, does anyone know if I can cut back the gluten and still get good results for a test? I could use any sort of tips, if there are any, to live through the symptoms until the tests and diagnosis. I just hate to go back to feeling so sick, especially since it's the holidays and I had been feeling better. I'm still not even 100% if this is what I have, but it seems like it could be. After years of having so much wrong with me and so many problems, I think it would be great to finally know. It's even better if it could explain most if not all of my other health problems as well. Any input would be greatly appreciated, and I'm sorry this post is so long. I could just really use some sort of guidance right now.
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