What Does A Bad Day Feel Like?

[Cornhusker]

So I've just finished up Week 7 post-diagnosis. By and large I'm feeling pretty good. Actually starting to put a little weight back on (only a couple pounds, but it's a start). We have been very alert about gluten exposure and I'm comfortable in saying that I've been gluten free.

During the seven weeks, I've had roughly 3 bad stretches lasting a day to 4 in duration. One of them I'm able to attribute to some medication reaction, so that is understandable. The other two have been more of a puzzle. I understand that recover takes time. There will be bad days as well as good. I wouldn't say the bad days are a result of gluten. They're not as bad as prediagnosis. The nausea never builds to anything worse. The D never really becomes 'D', if you know what I mean. Soft and unpleasant, but no real cramping or explosive pressure.

So, after that preamble, what were your immediate, post-diagnosis, non-gluten caused bad days like? I have a life to lead outside of this condition, so I'm going to work and trying to do the things I've always done (without overdoing it, of course). During these bad days I've had to miss a bit of work. Any recommendations (medication or otherwise) to help get through these stretches without having to go 'hermit' for a day or so?

I'm keeping a food log (mostly to track calories) and have not noticed any connection between what I've been eating and when the bad days occur. After only 7 weeks, I'm not willing to go searching for additional food problems when it's highly likely this is part of the 'normal' recovery.

Thanks.

[penguin]

Personally, I have 3 different kinds of bad days:

Type 1: Not that bad, just generally sleepy, foggy, and a burning stomach with waves of nausea, not quite d

Type 2: Bad, very sleepy, barely functional, in and out of the bathroom all day

Type 3: Very bad, stomach spasms, nausea, sleepyness, extreme pain, not functional AT ALL

I manage to work with types 1 and 2, but with type 3, I'm down for the count. Type 3 isn't related to gluten at all, and types 1 and 2 can be related to gluten, though not necessarily.

I cope by using red bull, tylenol, and antispasmodics (sometimes immodium too) on types 1 and 2 and it keeps me functional. Lots of water, also. If my stomach is going wonky on me, I try not to eat too many raw fruits and veggies, as my system has trouble digesting cell walls on a good day. If it's a type 3 day, I have very strong drugs for those that I hate taking but I have to to make it go away long enough to stop, but they put me to sleep.

[JennFog]

In my case, the only time, I have a bad day is when I have been glutened.

When I had bad days, I could not accept that it was part of the healing process, so I went through everything I ate, every little last detail of what I ate the day before and always came up with gluten somewhere that day.

Just be careful, being glutened happens by accident. One time, missed the malt flavoring another time it was triticale and then dextrin. Another time was a rice krispie treat which was gluten free but that day i bought a different brand and it wasn't gluten free.

[jlinc]

Hi Cornhusker,

I agree with JennFog: I don't have bad days unless I've been glutened.

I would download the food lists and pay particular attention to the food additives (like dexTROSE vs. dexTRIN). Print the lists out and put them on the refrigerator, keep a copy in the car for when you (or someone else) goes to the grocery store. Make sure your prescriptions are gluten-free (there's a list around here somewhere...). Study study study....

I've been fully gluten-free for about a year, but I was diagnosed 3 years ago. The other two years I was figuring it out... I'm not saying I'm quick or anything, I'm sure lots of people did it faster than I did. It was just a whole change in lifestyle.

Good luck, Cornhusker. You can do it!

Josh.

[blueshabooMoon]

  On 8/28/2006 at 6:08 PM, Cornhusker said:

So I've just finished up Week 7 post-diagnosis. By and large I'm feeling pretty good. Actually starting to put a little weight back on (only a couple pounds, but it's a start). We have been very alert about gluten exposure and I'm comfortable in saying that I've been gluten free.

During the seven weeks, I've had roughly 3 bad stretches lasting a day to 4 in duration. One of them I'm able to attribute to some medication reaction, so that is understandable. The other two have been more of a puzzle. I understand that recover takes time. There will be bad days as well as good. I wouldn't say the bad days are a result of gluten. They're not as bad as prediagnosis. The nausea never builds to anything worse. The D never really becomes 'D', if you know what I mean. Soft and unpleasant, but no real cramping or explosive pressure.

So, after that preamble, what were your immediate, post-diagnosis, non-gluten caused bad days like? I have a life to lead outside of this condition, so I'm going to work and trying to do the things I've always done (without overdoing it, of course). During these bad days I've had to miss a bit of work. Any recommendations (medication or otherwise) to help get through these stretches without having to go 'hermit' for a day or so?

I'm keeping a food log (mostly to track calories) and have not noticed any connection between what I've been eating and when the bad days occur. After only 7 weeks, I'm not willing to go searching for additional food problems when it's highly likely this is part of the 'normal' recovery.

Thanks.

Like you quote I am not a Celiac, i have celiac disease but that is not who I am. Well dang it I am going through rough patch again [newly diagosed], and I feel like I am the celiac disease, want to get a handle on this and live life outside the house & restroom again like a `hermit`as you so perfectly coined it.Bad days put in in panic mode, so afraid of relapsing and geting deathly ill for 12 weeks as I was from March-June this year before GI docs figured out lot of what was going on. Suspected intestinal virus that brought or triggered Celiac out of hiding, also small hiatel hernia & splinter gastroesophageal junction [swollen inflammed esophogus].

Learn so much valuable info from all of you who have been through this.I am supposed be the strong helpful one yet grown daughters have been put in charge of hosting all family gatherings etc because mom is always sick. Best advice I saw lately on forums here is eat simple whole plain live foods to start, I bought a whole range gluten free trying to substitute and have meals as normal as used to be & finding even though ingredients are gluten free I cannot tolerate anything tomato based in sauces, eggs, milk, no onions peppers, etc..Investigating L-Glutamine as reasearch shows excellent for healing intestines and stomach lining, and some digestive enzymes.

Envy that you are more highly functioning and able to work. Your great attitude shows in your posts. Thanks for sharing,Terri

[love2travel]

My bad days are not from celiac but chronic back pain/fibromyalgia where I have NO days without pain. I lie down to type, stand to eat, etc. My pain level is usually at a constant 5-6/10 but very bad is 9/10 like the other day when I tweaked my body - my pelvis and hips were way out. My husband had to dress me and help me to the bathroom, etc. Anyway, I cannot remember what it is like not to have constant bad pain as I have had it for nearly four years which means I rarely sleep well. But I am thankful I have TONS of hobbies such as cooking, testing recipes for companies, reading, etc. That is how I cope - in spite of pain I try to do things I love. I MUST LIVE WELL and I still love my life. My faith and family (especially husband) are very important to me, too.

[Fairy Dancer]

I was having a great day until I had corn on the cob for lunch!

Oh the flatulence...Its murder on the sinuses.

Not to mention I just don't feel good and I can feel my bowel starting to groan!

[GottaSki]

I had a rough time when I was newly diagnosed - some symptoms got worse, but my digestive issues improved over the first six months (very slowly) - digestive enzymes helped a lot.

[timothymichael]

Hey Cornhusker,

For me... each day is honestly a bad day compared to what I was before i had any issues with my digestion. With that said, I went thru a period of about 6 months where I was in a brain fog, lower back pain, joint pain, fatigue, nausea.. and I was like 21 years old.. I was freaking out, I thought I Aids or something crazy.

Once I figured out the connection between my diet and how I was feeling, it took me a while to eat correctly. After reseraching Candida and other thigns like that, I pretty much started eating on the anti-candida and gluten basis. I remember the week I began eating only chicken and veggies I would get acid reflux from it and just an overall toxic feeling in my stomaach and throat.

Once that week passed and I continued to eat that sort of stuff (no bread, just simple healthy food) my reflux subsided. That toxic feeling lifted and I began to read the newspaper at work. Literally, I couldn't even bring myself to read the paper at work, my brain fog was that bad.

Ever since I've committed to, and understood my food conditions... I say with respect to my body that every day is a "bad day." I am still recovering...

And I dunno if my condition is abnormal, but if I eat anything ANYTHING out of the ordinary, I will have constipation, the food will just sit in my gut and rot, reflux, lethargy, brain fog, and just a drunken feeling for a good day or two after eating that food.

If i eat wheat food, i will feel my lower digestive sytem move it slowly and make loud noises. My feces will look abnormal, and the "satisfaction" of a bowel movement is non-existent when I have something in my system I can't digest.

So, for taht reason, i can honestly say that every day is a bad day compared to when I had NO symptoms.

BUT, if I compare myself now with how I was for the 6 months i was suffering, I have never felt more in control of my body in my life.

Acutely if I eat improperly:

1. Food gets stuck in my stomach and festers

2. Toxic-gas like feeling in my throat

3. Brain fog, lethargy, moodiness, headache, nausea (the norm)

4. I will feel drunk for a good day... just out of control.

And once this happens, I will refuse to eat anything besides maybe some veggies or steamed fish... and once I do that, it takes about a day or two for it to pass my system and I will then be back to square one, and whatever I put in my body will either be digested or it wont. So... I eat things I can digest!

Again, not sure if my condition is more than just Celiac, I am still in the process of diagnosing... But i know for a god damn fact that I have food intolerances... its just so damn simple. Certain foods = no digest = feel like crap! Certain foods = good digest = feel energetic, sharp, and LIGHT.

Im sure you can all relate to that "light" feeling. When I get bad days, i feel heavy and weak and lethargic and like my gut has plastic ball in it.

So glad that my current "Bad Days" are avoidable, and my current string of bad-days compared to those 6 mos of suffering are pretty dang good. Again though, I havn't had a normal day since this all started 3 years ago. But, I am glad that the solution is to eat healthily and eat less. As such, I look and feel better.

Take Care!