In Testing. So Much Pain. Oh My God.

[xxrandomnessxx]

Hi friends!

I'm going through testing for celiac right now (waiting on blood test results, they're taking DAYS for whatever reason). It's driving me crazy, so, when I came across this website I was like, Oh hey, people that probably get it.

So hi there, people that probably get it.

Things started getting noticeably weird back in December or so. I'd been in the ER with unknown-cause abdominal pain in late November, but I'm not sure that's at all connected. I noticed, though, that I was starting to lose some hair. I also felt nauseous pretty often. I felt really off somehow, and didn't know how to describe it. I felt really unsettled, more anxious and kind of foggy. I caught the flu in January, and my appetite decreased a lot. I got better, but I still felt sick a lot. I was exhausted constantly, not a normal sleep-loss tired but a really deep, heavy tiredness that made it hard to sleep less than ten hours a night. What's worse is I'd oversleep a lot and not be able to get up not just because I was tired, but confused. I'd wake up confused, like nothing made sense, and when my dad would come to wake me (I'm 19, living at home) I'd feel befuddled and stressed, and then quickly fall back asleep. I was getting more forgetful, too, although I'm not organized on the best of days. I had night sweats since late November. I felt really achy, like my joints constantly wanted me to pop them but I could never get it quite right. I continuously had a decreasing appetite, because I was hungry but I felt sick after eating. I was continuing to lose hair, lose weight, and weirdly had a bunch of bruises from God-knows-where. In mid-April, I thought I caught my friend's stomach flu. I was really nauseous and diarrheic, but felt a little better for a few days until bam, I felt terrible. I had a lot of joint pain, serious nausea, muscle aches, headaches... after one urgent care visit, two ER visits, three doctor appointments, four or five blood draws, and a radiologist, I was diagnosed with mono. This was weird, because I was tested for mono back in 2009 and I had inactive mono in my system. For those who don't know, mono is a type of herpes virus and once it's in your system, it's there forever. Most people either get sick once from mono, or don't get sick from it at all. 70% of people are immune to it, as I was. Somehow, though, my immune system was shot enough that out of nowhere, I got awful, painful, debilitating mono. I figured things would get better after I started to recover from the mono, but no. It's been two or three weeks since I last felt the effects of mono, but I've just felt worse, differently. I'm losing more hair, my nails are more brittle, I'm constantly broken out, I'm dropping weight but my stomach is so bloated it's gross, I'm still covered in random bruises, anything I eat either gives me (really gross, sludgy/pale/smelly) diarrhea or just extreme cramping, and I have aches and pains everywhere.

I looked all of this up, and the internet was all, "that sounds like celiac disease!". My grandfather died from Chron's disease, and there's some sort of genetic history of autoimmune intestinal stuff. My main problem now is that my stomach kills. I'm really bloated, but I'm losing weight such that these size 2 jeans I bought two months ago are falling down. I went to my doctor, who said celiac is possible, and ordered a CBC, ferritin test, and celiac panel. My ferritin was okay (I take supplements, as I'm a vegan/previously vegetarian [if you lecture me about protein you can go call my RD, I swear to God] and I'm chronically anemic without them), but I haven't heard back on the other tests yet even though there's been three and a half business days since I got them done. They always call, so I assume they're still testing them. I know that if celiac comes back positive, I have to do a biopsy, so I'm still eating gluten, but I limit it to dinner time and I dread dinner. Afterwards I get this terrible slump, like I can feel a wave of bloat/nausea/heaviness/exhaustion hit me within 10-30 minutes after eating. My dad said maybe I'm imagining that, so I figured, oh, okay, if I'm imagining it then I can unimagine it and be fine! I entertained that idea for half a meal, but I felt just as terribly sick and was kept up until 4 AM from stomach pain, so. Pretty sure I'm not imagining it.

I've been too sick to do anything for months, only leaving my house to go to appointments and the occasional *adventurous* trip to the grocery store. I can't eat much because my family all eats gluten and meat, and I'm scared of gluten and ethically opposed to meat, and my favorites of noodles and bread are making me feel too bad to function.

My gut instinct (pun definitely intended) is that it's celiac, but I want to talk about it. My parents don't want to talk about it and I can't see any of my friends (I don't have too many but those that I have are in college and really busy), and I just feel the need to complain about all this until something hurries up and changes. I miss being able to eat, and I miss my hair! The hair loss/thinning is driving me insane - I'm not even twenty. I'm tired of being hungry and I'm tired of being bloated and nauseous. Anyone have any words of wisdom?

[cyclinglady]

I am sorry that you are so ill! I can only offer a little comfort and encourage you to be patient. It is hard waiting for test results!

[icelandgirl]

That sounds awful...I'm sorry. (((Hugs)))

You could give your Dr's office a call to check on the tests? Just a thought. Otherwise...hang in there.

[xxrandomnessxx]

Hello! I'm back.

Haven't heard back from the doctors, and yet it's been a week since I got the labs done. Well, it'll have been a week in about five hours. I've been up all night because of my damn stomach, and it's 6 AM right now.

Warning: Could make someone squeamish. It's kind of icky over here in my body.

Problem: I'm super severely constipated, and on the rare occasions when I'm not, it's like a deluge of disgusting watery grossness. Sorry, tmi. But this IS a GI-problem forum

My doctor, whom I saw last Wednesday (eight days ago), suggested that I take laxatives and do a stool sample.

The problem is, the laxatives aren't doing anything! I had to stop taking dulcolax because it did nothing but give me intense stomach cramping. I'm taking miralax, and I had high hopes for it helping me out, but no. I'm taking over two tablespoons a day, which is a regular dose. I'm raising that a bit in desperation because I feel so bad, and miralax mixes wonderfully with Gatorade, but.

Basically, I don't know what to do about this, but the fact that my intestines aren't responding to medication makes me wonder.

Plus, the day that I went in for my blood work, I was like, I feel so dreadful, I'll just not eat gluten until dinner time so that I have enough in my system to continue testing. And that one day that I did that, there were 24 or so hours that I was careful about eating gluten free (prepared food on extremely clean surfaces, ordered lunch from a local gluten-free restaurant... it might be stupid but I wanted to see if it would change anything because I felt so awful). And those 24 hours, I felt amazing. Like, okay, actually I still felt awful, but I felt amazing in comparison. I had NORMAL bathroom experiences and I didn't feel on the edge of my seat-type irritable and jumpy. Still felt and looked super bloated, but really. I didn't expect that kind of difference at ALL, and I felt so much better.

Obviously none of this is a diagnosis, but everything I've read (which is way too much, what with all the free time I have from being stuck in my house) says that while most complain of diarrhea, many have constipation problems either instead of or as well as the diarrhea.

My dad thinks I've imagined all this and that my problems stem from not getting enough nutrition, and that I just need to eat more. And I'm like, I'm so hungry I nearly cry from it but it's not worth the awful pain that comes with most food.

I don't know why I haven't heard back from my doctor and I'm exhausted and I don't understand why this is going on.

I'm sorry to unload my (probably hypochondriacal) rants on you guys, but you all seem to understand.

Thanks for putting up with all this. I feel like everything I've just said is really gross and highly unnecessary. But thank you!

[jennp1313]

Hello! I'm back.

Haven't heard back from the doctors, and yet it's been a week since I got the labs done. Well, it'll have been a week in about five hours. I've been up all night because of my damn stomach, and it's 6 AM right now.

Warning: Could make someone squeamish. It's kind of icky over here in my body.

Problem: I'm super severely constipated, and on the rare occasions when I'm not, it's like a deluge of disgusting watery grossness. Sorry, tmi. But this IS a GI-problem forum

My doctor, whom I saw last Wednesday (eight days ago), suggested that I take laxatives and do a stool sample.

The problem is, the laxatives aren't doing anything! I had to stop taking dulcolax because it did nothing but give me intense stomach cramping. I'm taking miralax, and I had high hopes for it helping me out, but no. I'm taking over two tablespoons a day, which is a regular dose. I'm raising that a bit in desperation because I feel so bad, and miralax mixes wonderfully with Gatorade, but.

Basically, I don't know what to do about this, but the fact that my intestines aren't responding to medication makes me wonder.

Plus, the day that I went in for my blood work, I was like, I feel so dreadful, I'll just not eat gluten until dinner time so that I have enough in my system to continue testing. And that one day that I did that, there were 24 or so hours that I was careful about eating gluten free (prepared food on extremely clean surfaces, ordered lunch from a local gluten-free restaurant... it might be stupid but I wanted to see if it would change anything because I felt so awful). And those 24 hours, I felt amazing. Like, okay, actually I still felt awful, but I felt amazing in comparison. I had NORMAL bathroom experiences and I didn't feel on the edge of my seat-type irritable and jumpy. Still felt and looked super bloated, but really. I didn't expect that kind of difference at ALL, and I felt so much better.

Obviously none of this is a diagnosis, but everything I've read (which is way too much, what with all the free time I have from being stuck in my house) says that while most complain of diarrhea, many have constipation problems either instead of or as well as the diarrhea.

My dad thinks I've imagined all this and that my problems stem from not getting enough nutrition, and that I just need to eat more. And I'm like, I'm so hungry I nearly cry from it but it's not worth the awful pain that comes with most food.

I don't know why I haven't heard back from my doctor and I'm exhausted and I don't understand why this is going on.

I'm sorry to unload my (probably hypochondriacal) rants on you guys, but you all seem to understand.

Thanks for putting up with all this. I feel like everything I've just said is really gross and highly unnecessary. But thank you!

Hi there. I was reading your posts and I can relate to almost every word. The foggy mind and fatigue are very bad for me, so I apologize for any poor articulation in my response.

 

I am so sorry you are suffering :-( I understand exactly what your going through, with a few variations on the same general theme. I wish I could offer helpful words, but unfortunately I am no closer to answers than you are. But, I really hope things start to get better for you!

 

Have you still not heard back from your doctor? I have not even been able to get a test done yet (LONG story. Crappy insurance, small town, etc.), and, like you, I live in fear of eating and BMs. I am curious to know: Did you see an allopathic M.D. or did you go to a N.D.? 

 

I also want to encourage you not to give in to the negative self-talk, as hard as that can be. Most likely you are NOT a hypochondriac. That is a more rare illness than Celiac, Anemia, etc. I think it's great that you are listening to your body, using sound observational skills, critical thinking, and intuition to take an active role in your health care. I often find myself buying in to what family members or inexperienced health care "professionals" might say. I feel so desperate for a proper diagnosis and treatment that I sometimes ask myself the same sorts of questions (Am I crazy?? Am I manifesting these things?? etc.). But, the fact that we are asking probably means the answer is "no". Also, healthy people often can't imagine the reality of what it means to be chronically ill. It is often easier to stay in denial than to admit someone you care about is sick. I won't get into it here, but if you need a more in-depth pep talk on the hypochondriac fear, I can probably offer more points that will put your mind at ease. Personally, I am 99.9% sure I have Celiac and Iron Deficiency. It's just a matter of waiting for my test to prove it. And if not, ok. That doesn't mean I'm crazy. It just means I need to keep searching for the right answer. I sincerely hope you get your answer soon!

 

Please send me a message and let me know what the results of your tests are (if you are comfortable sharing, that is). Our symptoms are so similar that I find myself very interested in knowing what diagnosis you receive. Best wishes!

[xxrandomnessxx]

I've gotten referred to a GI! They're supposed to call me soon. Which is good, because I'm dying. My blood tests were negative but I don't know which ones my doctor ordered, and she doesn't seem to know much about celiac (she thought that blood tests are always correct, but upon me, my mom, and my dad all doing our own research, we've found that as 2-10% of blood tests are false negatives because of some deficiency with tTG-IgA). She's puzzled now lol which like. Same. She was like "Yeah those are celiac symptoms, but your blood test was negative, so... I'm referring you to a GI."

So I'll hopefully see that doc before the week is up. I KNOW I should keep eating gluten throughout testing but I haven't eaten anything containing gluten in about 48 hours (save for cooking things in pans that have previously held gluten-y things but been washed) and I feel so much better, it's weird. Energy, no bloating, happier, no more random middle-of-the-night anxiety rushes, no back cramping. I can hardly bring myself to keep gluten in my diet when I feel so much better off it, but I know I need to keep eating it. I'd love to be able to eat it forever, but alas, I'm suspecting that that will not be the case.

The other thing that's keeping me suspicious is this: I ordered a sandwich the day I got my blood work done (Thursday before last) that I thought was gluten-free, because I ordered it that way. But they just put their regular sandwich (the gluten parts of which are a tofu patty covered in a flour mixture, and breaded onions) on a gluten-free bun! Why on earth would they think that that's gluten-free? Anyway, I ate it, thinking it was gluten-free and I'd feel fine, but got incredibly, terribly nauseous and had to run to the bathroom. Which was then followed by super gross watery diarrhea and waves of nausea/acid reflux/stomach cramping/more diarrhea. I couldn't work out why I had gotten so sick! But the other day, I ordered the same thing again, and this time they made it ACTUALLY gluten-free. I could tell bc it has a different color, different cooking method, different taste, and I checked with them. I felt completely fine!

I keep testing myself, sort of, to see if this is all in my head, but the consistent violently ill reaction I get to gluten foods, and the weird way that I feel great when I don't eat it, is making me think that I'm right to keep pushing my doctor.

I've had some of these symptoms intermittently since I was maybe 12 or 13, and I had a blood test for celiac when I was 13 and it came back negative (I think they only ran one test, not all five). They all got nightmarish starting in December this year, after I had a really stressful event in late November. Everything keeps getting worse, even though I've kept expecting it to get better. I'm thinking that maybe I have a tTG-IgA deficiency going on, thus explaining why blood tests have previously come back normal, or maybe a non-celiac gluten intolerance (which seems sketchy to me, since there's no official diagnostic procedure for that). The GI will surely help!