• Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   04/07/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
  • entries
  • comments
  • views

About this blog

Pre-diagnosis to everything after

Entries in this blog


The 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.


Here 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.