Most of you will remember that I was told, a few months ago, by the specialist, that I have Celiac disease and that it was quite a shock.
But I adjusted, and as I adjusted, I prepared myself for the test that would confirm, 100% that I had the disease.
Well, now I've had the test, and a few others for good measure, (and I assure you while some of may have been uncomfortable, none of them were awful, so if you're going through any sort of digestive system tests and are nervous, email me and I'll tell you just how ok you're going to be.) and I've had my results back.
The tests I was most anxious about came back clear; a big relief.
And then my Celiac biopsy results came back.
And I don't have Celiac disease.
But I don't not have Celiac disease.
And I can't quite wrap my brain around it.
I just spent the last few months wrapping my brain around being diagnosed with an illness that I now don't have. That took a few days to process.
But before I was finished processing not having it, I went in to see my doctor who went over the results with me and showed me that while things look great, they don't look perfect, and we don't quite know what that means.
So I'll be back to see the specialist in a few months and meanwhile I'm going to stay off gluten. My best guess is that we've caught the disease in it's earliest stages (which rarely happens) and so while things are a little "off" (and my blood work points, most definitely to Celiac), nothing's damaged. So that's good.
But it's still not clear. It's not a specific, measurable, nameable answer, and it's not what I had wrapped my head around.
So I'm re-adjusting, but I don't know what to, and I won't know for several more months, if ever.
And that's a little odd.
To say the least.
11 comments:
Doctors visits are great, aren't they? You come out of them more worried about what you may have than you were when you went in..
Good luck with the diagnosis!
I was in a similar situation about 6 years ago. My gut started giving me incredible pain out of nowhere and I was missing days of work and school due to not being able to leave the toilet. It was 19 years old and went to a million doctors and none of them really knew what was going on.
Got tests for Celiac, gerd, uc, etc... none of them came out positive. Had 2 colonoscopies, and an endoscopy (which is the gold standard for celiac). The endoscopy was similar to your's. It wasn't definite celiac but it wasn't definitely not celiac. I tried no gluten for a couple of months but it didn't help me (I know, the food sucks). Supposedly you should see the results of no gluten in a couple of weeks if you have celiac but I read it could take up to a year for the villi on your intestines to grow back.
I lost 35 pounds the first month I got sick. Ended up dropping out of school. Didn't see my friends much because I didn't want to go out. It started to consume me. All I could think about 24/7 was my problem, and thinking about it made it worse. I read the internet for hours a day for a few years. Read medical journals... everything I could find. I would often go to my doctors with more knowledge than they, which was very discouraging.
All the doctors told me I had IBS, which is basically what the doctors come up with when they don't know what it is. supposedly 25% of the population in the US has IBS (to varying extents), mostly women (I am a man).
Here is some advice on what tests to take, if you haven't already.
-Endoscopy: for celiac and ulcers
-Colonoscopy: to make sure you don't have cancer (god forbid)
-Breath test: you drink some liquid and then breath into a bag for about an hour. This will show if you have a lactose problem and can show if you have some kind of bacterial imbalance.
-Stool sample: this is to test for parasites
-Bloodwork: they can test for certain antibodies related to celiac and other problems (minerals, protein imbalances, etc.
-Allergy tests: Do both the bloodwork and the ones where they do that thing to your arm.
I ended up sticking to the IBS diet very strictly (what is recommended on most websites). I ate very bland foods. Not fats, sugars, oils, creams, dairy... basically I avoided anything that was bad for me or tasted good. It took me a few months but I eventually found out what things bothered me. Cinnamon was really bad for me and anything with corn in it (which is everything). I ended up eating the same six or 7 foods every day for 3 years (apples, bananas, fish, potatoes, turkey, rice). No lie, that's all I ate for a few years. Didn't go out to dinner ever. I felt much better once I got my diet down.
About 3 and a half years after it started I slowly began to feel a little bit better. By this time I had graduated school (I went back) and had a job I liked. During this time I was working full time and going to school full time. Maybe it was stress related... I know stress made it worse. It wasn't all in my head though. If I ate something that I shouldn't eat, even if I didn't know I shouldn't eat it, I would have a physical reaction.
The brain/gut connection is pretty strong, and science doesn't fully understand it yet. And unfortunately, science doesn’t really understand intestinal problems either. I've tried every drug out there. Antispasmodics, antianxiety pills, digestive enzymes, bacterial flora pills, etc. Everything just made it worse. Since I had alternating D and C the pills either blocked me up or let it flow. Nothing regulated it (although benefiber helped a bit). The only thing that really made me feel better was marijuana, which was great for the short term but smoke isn't good for the gut and I think it was bad for the long term. I also don't want to be high all the time.
As of right now, I still have the problem, but I can live with it. My diet has expanded form before. I can eat red meats (non fatty) and I even have some alcohol now (although I pay for it). The best thing now is that I'm not in pain all the time and can live life, although I still hate going to restaurants.
I don't know what your particular problem is, but if you want to talk about anything or ask me anything just let me know and I'll give you my email address.
I had similar issues as well. Had every test known to man. The worst was the esophageal strength test. Although that is probably a tie with having to drink barium for the upper GI. The coolest test was a test to see how long it took my stomach to empty. I had to eat an egg sandwich laced with a radioactive isotope and then they put me under and active xray to watch it.
Basically, I had to narrow down the food/spices that bothered me and stay away from them. Pork, corn, milk, and anything with a high fat content are bad for me. For the most part, it's managable. The problem comes in when I either don't pay attention or I miss that a particular dish is made with something that doesn't like me.
Pretty much, don't give up on this. Stick with the specialist and get a second opinion if necessary.
Anonymous, my ex-boyfriend's mother is allergic to corn. She never eats out ever. EVER. There is corn in everything. She has done quite a bit of research too and she dates her allergy back to when they started growing Bt corn. And you're absolutely right, there's corn in everything. Corn starch, corn syrup. Other allergies that I know of first hand: citrus, onions, tomatoes, eggplant, zucchini. Those are all different individuals of different ages, backgrounds and races. I personally am allergic to eggs (also in a lot of foods) and am going to see an allergist in June to run some of those hokey tests.
The body is a weird thing.
i thought that they couldn't diagnose celiac unless you were eating gluten so if you were avoiding it after your initial diagnosis, the second test wouldn't necessarily find it...would it? or am i wrong?
Um, wow.
Our healthcare system continues to scare me. ;(
Though if it is Celiac's in the very early stages and you will heal, that is a good thing, right?
Dominic, sometimes they're a little more confusing, yes :)
Anonymous, thanks for sharing your story and your information. I've had most of those tests done too (fun!) I'm sorry you went through such a rough time and am glad you're managing with it now :) So, thanks. Good advice!
Erik, yeah, the barium wasn't one of my faves either. (Ick) And that stomach test does sound cool! And thanks, I won't give up on it :)
EB, the body is kind of wacky, eh?
Hope your allergy tests go well.
Dilling, you're right. And I was on glutens up until the test :) (And, man oh man, did I ever enjoy every bite of white baguette I ate!)
Yvonne, absolutely, if it is Celiac in early stages, I'll totally heal it and be good to go! Yay! :D
It is good to know you don't have Celiac's. But it is probably frustrating thinking you had it and still not knowing. I hope everything goes well. Good luck.
I have a couple of friends with Celiac's and they are doing great. They just have a super crazy diet and can't ever eat out.
Love and prayers for you from the States.
Yay, love and prayers from the States are always welcome! :)
I have never been tested for celiacs - but I get super sick whenever I eat wheat or gluten (and eggs) which is kind of enough proof for me. good luck with figuring it! It definitely sucks!
There are a ton of people that I'm discovering don't do well with wheat or gluten :)
We're all one big happy family!
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