long time since i posted (and if i'm not at work, i don't care a bit about capitalization so i apologize) - any other celiac been diagnosed with idiopathic hypersomnia (IH)?
3.5 years ago, i was diagnosed with celiac, 1.5 years ago they added microscopic colitis to the list of my problems, then after being on entocort for the colitis (no idea if it's related) i started falling asleep... at work, in meetings, while driving. i also sleep for 16-18 hours on days where i don't have to work (and make sure to get 8 hrs on week nights - with some napping if i can swing it). two sleep studies and an MLST later, narcolepsy was ruled out (thus, my insurance will only pay for generic stimulants like adderall)... this is getting absurd. no dose of adderall/focalin will keep me awake anymore. they never really did, but kept me from falling asleep at the wheel or at work.
my new sleep doc (got a second opinion after my original sleep doc decided to try me on extremely high doses of focalin, saying there was nothing else he could do) had me try samples of nuvigil. it helps a LOT (i can't afford the cost without insurance, so i'm hoping a cheaper generic provigil comes onto the market soon)... but only for about 6-7 hours. i feel sane again during those hours - intelligent, awake (but not cracked out) and back to being my articulate self. but then i crash (in today's case, while driving) and when i do crash, i become this dizzy, inarticulate, almost drunk person.
i was diagnosed with RLS, periodic limb movement disorder and REM sleep behavior disorder during the sleep studies. i have since gotten off any meds outside of those absolutely necessary (apriso for colitis, horizant for RLS, stimulants for daytime, triazolam for night)... still on a completely gluten-free diet.
anyone else have a similar diagnosis? i'm 31, female, never had a baby, work 6:30am-4:30pm, exercise regularly, have a healthy diet and take care of myself. worth noting that when i had celiac, i hit about 110lbs (i'm 5'10") then leveled out at 125lbs. since the IH (and stimulants) i'm at 140lbs. had a "bod pod" yesterday indicating that i'm about 31% body fat and was told to try to reduce my caloric intake to 1500 cals/day since i already work out 4-6 times a week (strength training, running, dance).
seems like when i eat, it sits in my gut for hours... i have been trying to build up strength and cardio endurance, but my muscles don't seem to want to cooperate.
frustrated and tired of dragging myself through the day so i can afford to take care of my basic needs...
Those of you who are supportive and loving with us crazy celiacs really deserve some kind of honorary title or award or something. It's not easy watching someone you love hurt, and my boyfriend tells me the worst part is being helpless.
I can't take any aspirin, ibuprofen, aleve because it does tend to irritate my stomach and worsen my collagenous colitis. I would suggest tylenol and/or tramadol to help with the pain (though in my most extreme glutenings, I will take vicodin) - other than that, I usually eat bland foods (broth, rice, plain chicken) when recovering from a glutening just so it allows my body to heal and not have other issues come up. My heating pad is always nearby also!
Hope this helps!
I've been diagnosed with Celiac for 2.5 years and I was diagnosed with microscopic colitis (collagenous) in January of this year. The doc had me on the gluten free diet (which I follow religiously) and started me on asacol, then added entocort when I was still having problems, then it was hurting to breathe and he noticed that in my endoscopy two years ago I had esophagitis and gastritis, so he gave me prevacid. I'm already on 20mg/daily of prozac for migraine prevention, ultram as needed for pain, vicodin as needed for when I get glutened, maxalt for migraines as needed, then ativan for when I can't sleep.
Asacol wasn't working, so he switched me to apriso, and now (after having a few weeks of peace followed by a week of pain, D, and daily extreme pain and D in the afternoon - especially if I exercise) he's added bentyl to the list. I'm beginning to wonder if these meds are doing more harm than good.
Does anyone else have experience with these meds or the afternoon pain/D? What has helped? I've tried liquid diet, rice only, rice/bananas/applesauce/chicken, etc. I am really feeling embarassed by all of this, especially with my live-in boyfriend. I almost don't want to tell him when I'm in pain, but he sees it. It used to be all bad days, now I'm grateful to have some good ones, but it seems like I get better for a while, then go back to bad again. Frustrating. Sometimes I want to remove it all: stomach, intestines, all of it.
Thank you - I'm going to ask my doc today about SCD - at this point I'm willing to try anything.
Was awake most of the night with gas and headache (I'm sure the headache was due to not eating) - but it was a welcome break from the constant D - I know not eating isn't the best plan, but I needed a break.
Wondering if anyone has experience with Crohn's - my old doc (who insists I'm somehow ingesting gluten) did some serum test for it and said I don't have the gene, but I can't find anything online about genetic tests.
Ugh - hopefully the new doc can shed some light on this. Also, a new pain developed - lower left side of the front - but more in the back. My boyfriend thinks it's my kidney due to dehydration, so I'm drinking as much liquid as I can handle.
Been diagnosed celiac for a little over 2 years now - watched my antibodies go from 100+ to 6 right now. Health has been a real issue for me - a few months ago I took a supplement with iron and wound up so constipated my intestines were literally filled to the brim (my doc showed me on the x-ray). For the past 6 weeks, it's been the opposite - D anywhere from 5-15 times per day. I am gluten-free of course - tried eating just bananas, applesauce and rice for a week, then went just to liquids for two days because I couldn't handle embarassing myself by running to the bathroom at work so many times per day. Then I tried just rice for a week. Fortunately my weight is stable. My gastro doc insists I'm getting glutened and have IBS. I am in so much pain I wind up taking 3 ultrams a day minimum. Tried lomotil so many times in the past 6 weeks. Taking align probiotics and getting a new gastro doc - til then my family care doc put me on antibiotics in case it's intestinal bacterial overgrowth. Of course, that just makes me more miserable. If I eat anything, the tension in my abdomen and the pain is so much that I don't even want to think about food or water or anything. And it all makes me sick. Tomorrow I go see the new gastro doc, then in 2 weeks I have an appointment with another gastro doc. UGH! This is humiliating! And of course being on pain meds causes my doc to raise his eyebrows - well I've tried everything else! These anti-spasmodics and anti-depressants for pain just don't work on me.
Any tips or help would be sooo much appreciated. My doc ran some sort of Crohn's test a while back and he said it was negative (a blood or serum test) - so frustrated.
Ok, I'm freaking out. I went to Carl's Jr. to get my delish gluten-free natural cut fries and an avocado burger with lettuce wrap for lunch and made sure they knew I couldn't have wheat at all and to change their gloves, etc., etc.
I got back to the office and tore into my burger (usually I carefully check it first) but I was hungry and five bites in before I realized there was no avocado and it was covered in sauce. They gave me a teriyaki burger.
I've been accidentally glutened quite a few times in the past year since I was diagnosed, but never on purpose, and I never realized before the pain started. So to realize this as I'm swallowing teriyaki-coated burger freaked me out. I threw the burger away and am trying to work while I freak out about how the teriyaki sauce was probably not gluten-free. I called the Carl's Jr., but the manager didn't speak the best English, though he did say the bottle didn't include wheat as an ingredient. But what if he was just in a rush or it had soy sauce as an ingredient? I don't know what to do and I really don't want to make myself sick over this if I'm not glutened, so I don't know if the bubbles going on in my guts are gluten or nerves. I only ate those bites maybe 20 minutes ago... any advice would be great. Knowing that you might be in terrible pain soon because you were too hungry to check your food is a miserable experience.
Sorry - I forgot to say that yes, I take probiotics. I have kombucha at least twice a week as well - tried enzymes but I think they were causing more harm than good and I've tried lots of natural "intestinal calmers" and the like.
I have an appointment with my gastro doc today - the nurse relayed a message that since my endoscopy was clean back in Feb/Mar, I shouldn't have an ulcer, so he wants to see me. I'm not sure how long ulcers take to develop but I wasn't doing anything I can think of to cause one.
I've printed out my pharmacy history (tried everything from antispasm meds to antidepressants to narcotics for intestinal pain - of course the only thing that worked was the narcotics, but my doc clearly hates filling that med and I'm scared to death to take them unless I'm in so much pain I can't move) and put together a detailed list of my symptoms ranging from the ulcer to the intestinal pain to things that I think are probably unrelated like my flu symptoms from last week. I also put together a list of my daily meds, my as-needed meds and my discontinued meds (along with reasons).
Hopefully this will help him help me. If not, I guess I'm back to square one and get to try the elimination diet yet again. The smell of sweet potatoes still makes me sick. My poor hubby - he has enough on his plate without being married to a 28-year-old stuck in the miserable body of a 95-year-old.
Be back with good news (I hope!) later!
You know, I've eliminated dairy multiple times in the past year (initially it was quite a problem, but after 3 months of going gluten and dairy-free, I seem to do fine with dairy. Obviously I've remained gluten-free - just had my first sandwich in 8 months - thank goodness for Kinnikinnick!) and I have done the elimination diet multiple times as well, but maybe I haven't been patient enough. Are there accurate allergen tests that can be done?
And on the ulcer - get this - back in Aug 08 when they did my first endoscopy and discovered my atrophied villi they tested for H. Pylori. I told the doc that so I guess he found no reason to test for it. I need to do more research on ulcers. The base doctors are so busy I can't really blame them for moving through patients quickly.
I haven't been on this forum since March (I think) when I had D for a month and my gastro doc finally did the endoscopy/colonoscopy and found that after being gluten-free for 6 months my villi had grown back! Yay! The doc had been blaming my symptoms on somehow getting glutened... at any rate, I was diagnosed with IBS. I was diagnosed with Celiac disease a year ago and have been extremely careful about being gluten-free since I'm super-sensitive to the slightest amount of gluten.
It seems like every 1.5 to 2 months, I get severe belly pain accompanied by either D or C and I have my Ttg levels tested and last time they were at a 12! Quite a change from the 100+ in Dec 08. I do everything I can at home (am super-careful with food, avoid going out to eat, I've done the elimination diet a few times) and then finally go back to my doc, who usually throws my symptoms into the IBS category. About 2 months ago, I developed severe abdominal pain in the upper left quadrant (usually gluten causes pain 1 or 2 inches above my belly button and my so-called IBS is of course in my small intestine - which is odd since I always thought it hurt the large intestine and is relieved by BMs - my intestinal pain is not). My doc didn't run any tests, but diagnosed me with an ulcer and started me on meds. After a few days, the meds seemed to help! I still get what I think must be ulcer pain every time I forget to take my 4x per day carafate or 2x per day zantac.
But now I'm back to that point where I'm having pain again. I can't even tell where exactly it is. Sometimes it seems like it's higher, then lower, then it's so excruciating I can't even focus and I roll up in a ball. I have no desire to go to my gastro doc because he'll do the same thing he always does, "Well, you must have ingested gluten or it's an IBS symptom. Go to the lab and we'll test your blood's Ttg levels." It's a waste of my time and I don't have a ton of sick leave. If I go to my doc on base, they'll just tell me to go to the gastro doc. I'm nearly convinced these doctors "diagnose" and then figure it's all in your head or you're just stupidly sabotaging yourself.
What I really love is when my gastro doc says, "All my other celiac patients went gluten-free and all of their symptoms went away." Like that's supposed to magically heal me. Ugh. At least I can still go to work and do what I need to do and I have backup pain meds if necessary. But that's just a temporary band-aid. I keep telling myself I just have to get used to having abdominal pain daily - and I've actually gotten used to some of the pain. But some of it is just too much.
I don't know if I'm venting or asking for help, but either way I do feel better talking about it I don't talk to anyone else about it because they either go too far one way (like my mom, who worries sick) or the other (like my husband, who seems to think that "mind over matter" can cure the pain). Everyone around me is sick of me not feeling well, so I just keep quiet. It's easier that way I guess.
Good evening all,
Another night in pain - I don't know what I'm doing wrong. My hubby thinks that sleeping with the cats on my bed may be a problem, and petting the dog. I'm very good about washing my hands. Another gluten-free day/week/month and I'm still in pain. I think Gemini is right - it must be something else. But how do you get a Dr. to test for something else? My doc seems quite set on the idea of me cheating - I must be a masochist! I stopped drinking for a week - no good (I have a Bard's Tale Beer here and there), did the whole simple diet, didn't help. I don't know what to do.
I feel like I've hit a brick wall and I'm begging for help but this doc that the base referred me to seems to think it all goes back to me being glutened. I'm going to look into gluten-free food for the animals - no idea how two cats at the foot of my bed would gluten me, but I suppose that's another possibility to eliminate. This is so frustrating. I'm keeping my chin up (my mom insists) and I've got a gluten-free list from Burt's Bees (all of my skin/hair care is wheat free, there are a few products that I'm learning the Vit-E sources from - waiting on responses and not using until I hear from them).
Tes - I don't use chicken broth - I use boullion that has to be refrigerated - but I rarely use it at all - no gluten ingredients! And my household is gluten free - I threw out any contaminated appliances months ago. This disease is costly
I'm in too much pain right now so I have to go, but thank you for the support - I really need it right now with my hubby gone.
I'm relieved to report that the colonoscopy and endoscopy showed no abnormalities that the doc could see. He did take another duodenal biopsy. He definitely thinks I'm sneaking gluten. I'm happy that I don't have anything serious going on, but unhappy because the pain and all the D definitely wasn't in my head. And I already tried the elimination diet. When I was on rice, carrots, and chicken I still had D and pain. Same with when I replaced rice with sweet potatoes.
So tomorrow I'm making the calls on all of my lip balms to verify that they're gluten free (most of them have vit E), then I'm tossing any remaining items that may be suspicious unless the company confirms gluten-free status. I've gone off all of my supplements for over a week now and it hasn't helped (they all have clean ingredients and are marked free of gluten). So now I'm going to call the pharmecutical companies again to check the meds I've been taking. I've been working so hard to be gluten free, I just can't imagine that I brought this on myself.
I also bought two books on Amazon regarding celiac. Still can't believe that my local B&N didn't have anything on it but cookbooks.
Anyways, thanks for the support - any new ideas would definitely be appreciated! It's been a rough month.
Wow, it's been a crazy past few days. Woke up Monday with intense abdominal pain - couldn't stand up straight. Then I had three BMs in the next 20 minutes (which is weird, I don't usually feel so terrible in the mornings) and I saw blood. I called in sick to work, took a vicodin, and waited til 9am for the gastro doc's phone lines to open (I get up at 5am for work so it was a long wait). So I explained my symptoms for the nurse and they had me in for a CT scan Monday at noon, then around 230 they wanted more blood work. The nurse told me to start a liquid diet just in case the Dr. wanted to do a colonoscopy.
So I haven't eaten in 29 hours (finally got the go to add broth and 7-up, the first 24 hrs were just water). The nurse called today around 3pm to let me know that the CT results and blood tests were normal - weird... so the doc wants do do a colonoscopy tomorrow at noon (yeah, they started me on all that fun "cleansing" stuff... fun fun) and if he doesn't see anything in there, while he's already got me under he's going to do an endoscopy. A gal from work is giving me a ride (wish family lived closer, it's a bit embarassing). At any rate, I just wanted to give you guys the update.
So what happens if they don't find anything? Am I just crazy? Switching food didn't help, so I really hope they see something tomorrow that is easily fixed. This body is driving me nuts!
I went through the same thing with McD's fries - I had read their website months ago that they were gluten-free, but then checked it after getting sick, and yep, wheat and dairy - in fries!!! You have to check the websites/labels on foods consistently because something always changes.
On the "back to square one" thing - I decided one day after getting glutened that since I was already back to square one, I should enjoy some candy that I knew sometimes got CC'd in the factory. This was back when I was first diagnosed (Oct 08) - I was miserable and glutened for the 2nd time - hubby was furious. You can't think about it as back to square one - it's more like "hey, I learned something else today," and you stick to it and move on.
If they ever find a cure for this disease, I'll be on cloud 9 - I can go without gluten just fine - it's the CC and hidden sources that always get me.
I'm feeling better tonight - after making that post I called my Dad who is an RN. He said the same thing you said Cat - that it would take months if not a year for my antibodies to get to the level where the gastro doc wants them. I'm glad the base docs finally referred me off base - military docs don't really have time to listen to you, so it's always nice to be given the ok to go to a specialist. But even my gastro doc doesn't seem too educated on celiac.
My house is completely gluten-free and for the past three weeks I have been on a very simple diet. Initially it was white rice, well-cooked carrots and chicken, then someone on the forum suggested that rice might be causing the pain and D, so I eliminated that for a while and did sweet potatoes instead. Well, the base doc gave me lomotil so my D has decreased, but the pain is still there, it seems unrelated to the food I consume (with the exception of dairy and of course gluten). My hubby is gone so I'm on my own, but I think that's probably better anyways. He feels so helpless when I'm in pain and he can't help. I have vicodin for when I get glutened and I asked my base doc if I could take it if I was in severe pain. He said ok, so I've been taking a half at a time.
The upside to all this is that my medical bills are nonexistent. Granted, that comes at a cost - my husband is in the desert right now. He's in the USAF so all of the tests, diagnosis, etc were free. We live in Utah so if anyone knows of a celiac specialist I would have to pay out of pocket, but at this point I'll do whatever I can to get better. I don't eat out, I threw out any glutened utensils, pans, lotions, meds, etc. This disease is so frustrating. Hopefully I'll have the abdominal CT scan next week and that will tell the doc something. I'll let you guys know. Thank you for the support - I don't know what I would do without this forum
I would like to cuss out myself and everyone else right now. Since October, my tTg antibodies have gone from 100+ to 86 in late December. I got referred to a specialist for my constant intestinal pain. My test (I provided the blood Wednesday) shows antibodies of 81. Seriously... what am I doing wrong? I've stopped taking supplements (and have no energy because all I'm eating is rice), I rarely take pharmecuticals without knowing they are FOR SURE safe... I use gluten free lotions, shampoos, lip balms, etc.
What the heck is going on? Why am I still so miserable? My doc is ordering an abdominal CT scan and honestly, I'm about ready to be done with putting ANYTHING in my mouth. He thinks I'm cheating... I'm not... but he's very accusatory with me. It ticks me right off - you don't try this hard to be healthy then get slammed with this. It's BS to be honest. And I have no one to back me up.
I'm so tired these days, and in pain, and miserable. I'm 27 and still hope to get prego someday. But will I ever be healthy? I don't know what to do... and I went to the only non-religious book store in my region to find nothing but cookbooks. I am feeling very alone right now.