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Input?

quakenbake

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quakenbake Rookie
quakenbake
Posted

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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sahm-i-am Apprentice
sahm-i-am
Posted

I'm so sorry you have suffered for so long! It sounds like you are on the right track though. I have heard doctors recommending eating 3- 4 slices of bread a day (or the equivalent) when doing a gluten challenge before Celiac testing. Hopefully your tests are soon. You can also have Pepto Bismol, Zantac and various other medicines on hand to help deal with the symptoms. It stinks you have to go through this, but once you have your diagnosis and go gluten free for good think of how great you will feel! :D

quakenbake Rookie
quakenbake
Posted
  • Author

Thanks. The doctor's office actually called today, and I can get in tomorrow for my consultation. I have all kinds of medicine (prescription heartburn medication, dicyclomine for stomach aches, Pepto Bismal, you name it), so I've been loading up on that while I load up on bread and pasta. I'm just worried at this point that they'll tell me that it's not Celiac.

txplowgirl Enthusiast
txplowgirl
Posted

Hi Quake,

Hope you get to feeling better. Just to let you know, there is a high negative rate on the tests, so you may show negative on the tests but you still can have a gluten intolerance. So, after all the testing is done that you want I would go gluten free. You don't have to have a dr's permission. Since you seemed to find a little relief in just the brief time you were gluten free I am willing to bet in about 6 months you will marvel at just how good you do feel.

Hang in there.

sahm-i-am Apprentice
sahm-i-am
Posted

Hi Quake,

Hope you get to feeling better. Just to let you know, there is a high negative rate on the tests, so you may show negative on the tests but you still can have a gluten intolerance. So, after all the testing is done that you want I would go gluten free. You don't have to have a dr's permission. Since you seemed to find a little relief in just the brief time you were gluten free I am willing to bet in about 6 months you will marvel at just how good you do feel.

Hang in there.

TOTALLY agree with this - you do not have to have a doctor's "note" to go gluten free. If it makes you feel better then do it! (Gosh, that sounded like bad parenting advice, didn't it?!)

quakenbake Rookie
quakenbake
Posted
  • Author

Haha I don't think it's bad advice in this instance; although, I might be a little hesitant trying it with kids. I am planning on going gluten-free as soon as I can- I've only been back on gluten since Sunday and I already feel miserable. I'm so tired of feeling unwell that I don't care if I get an actual diagnosis (there seem to be a lot of false negatives from what I can tell, so I doubt I will pay much attention to a negative result). It'd obviously be nice to have overwhelmingly positive results, but I won't know anything until I at least go in for my consultation today. I suppose I could always eat another bowl of Grape-nuts before I go in :P

TOTALLY agree with this - you do not have to have a doctor's "note" to go gluten free. If it makes you feel better then do it! (Gosh, that sounded like bad parenting advice, didn't it?!)

quakenbake Rookie
quakenbake
Posted
  • Author

Well, I just got back from the doctor a few hours ago. He didn't want to say this is Celiac until I had some tests done, but he definitely acknowledged that there was something wrong. I can certainly respect not wanting to say "I think this is what you have" after not seeing any kinds of tests, nor would I want him to. He's apparently been in the field for 40 years and comes highly recommended. I've had blood drawn for the full screenings for Celiac (including genetic testing, I believe) as well as for IBD- he didn't want to exclude anything just yet. I was also fortunate to not only get in due to a cancellation today, but I get in for my endoscopic biopsy next week! I thought it'd be at least a month or two away. I had been worried, but I was told that even though I had eaten gluten-free for 4-5 days last week, it wouldn't be enough time for anything to heal or mess up the tests, especially since I've been back on gluten for the past few days. My plan is to load up on gluten this next week and eat some of my absolute favorites while I still can (New Orleans style bread pudding anyone?), and then eat gluten-free as soon as my biopsy is done. I'm really hoping that this means something since I've been able to get in to everything so quickly and easily. I could use a little Christmas miracle.

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GFinDC Veteran
GFinDC
Posted

That's great they are getting you i for the endoscopy so quickly. It would be goo idea to go ahead and go gluten-free after that regardless as even the endoscopy can miss damage. There just are no perfect 100% tests for celiac right now. But a change in diet is the only treatment anyway and also the best test. If your symptoms resolve or improve due to the diet it tells you that your body is reacting in some way. Even if your body doesn't know how to do a perfect 10 on the test scores it can react in it's own way.

quakenbake Rookie
quakenbake
Posted
  • Author

That is my plan- I'm just going to eat the gluten until next Thursday, and I will be gluten free unless I'm told otherwise. I hadn't thought of IBDs before, and I can't say I'm not worried it will turn out to be one of those instead. I never thought I'd be hoping for Celiac so much; it seems kind of strange to want to be diagnosed with Celiac. Things like Crohn's and UC seem really scary to say the least. I keep telling myself that my symptoms fit more with Celiac, I think (I hope they do), and the fact that my stomach stopped cramping and feeling so nauseous when I ate gluten free for the 4-5 days last week should be a good sign. I don't know what I'll do if it's an IBD...

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