Can't Take This Disease Anymore!

[GFreeMO]

Hi,

I'm going to make this the condensed version.  

 

Gluten free for 3 years and doing ok.  Had several life stresses like illness in the family, both of my dogs that we had for 14 years passed and had to move to another state.  Went to a doc who said I never had celiac and that I had severe IBS due to those stresses. I started eating gluten again.  I was "ok" for a month or so and I blamed any symptom that I had on "IBS"  then I went back to that doc b/c I started getting migraines and a rash (which I now know is DH) all over my body and severe joint pain.  She ran a lupus test. Neg.  My blood test showed elevated liver enzymes.  She sends me to a GI who then diagnosed me officially with celiac disease back at the very end of Jan.

 

The symptoms that have subsided are the joint pain, muscle pain, migraines. My GI issues and DH are persisting.  I have lower intestinal pain, light colored floating stools with oily or a mucus type discharge.   TMI but my stool sinks then floats back up.  I believe this is fat malabsorbtion.  

 

I don't eat any packaged foods..nothing..and I don't ever eat out.  I gave up corn and soy and dairy.  On Sat.  I made some organic popcorn and I woke up the next day with the damn DH EVERYWHERE and intestinal pain, floating stool and the mucus again.  

 

I don't get it!  I am getting really annoyed with the GI issues.  I sort of feel like since I am eating gluten fre now that I shouldn't be having these issues anymore.  

 

Does this just take time?  Does it take a while for the GI issues to resolve?  My GI said that I probably had celiac for the last 14 years and didn't know it.  

 

I just want to take my diagnosis and eat gluten free and put this ALL behind me but I can;t when I have a searing gut and raging DH every day.

 

[shadowicewolf]

Can't never could do anything as the saying goes...

 

Yes, it takes time. For some it can take years to get back to 'normal' while others heal quicker than that.

[GFreeMO]

Thanks Wolfie.  I am not a patient person at all.  I want this all gone like antibiotics to an infection.  I guess if it took me 14 years to get like this, I wont be all healed up in a matter if a few months.

[Adalaide]

I was diagnosed and went gluten free in January of last year. At this point I am still fighting with a doctor to get anyone to test me for Addison's. (I'm always nauseous, my hair is falling out, I could pretty much eat salt from a spoon and still want more, my blood pressure is on the low side of normal and I feint walking into air conditioning, getting out of hot showers, etc, I'm always tired and everything always hurts.) My next neurologist appointment will (hopefully) finally be an official CRPS diagnosis so I can move on to trying to get proper medical care for it. Both of these are autoimmune diseases which probably could have been avoided by having a proper diagnoses of celiac at any point in my life.

 

On top of this, I have struggled my entire adult life with my weight. I am finally starting to drop a little weight now that I have been gluten free for long enough for my body to adjust to getting what it needs. This can't have helped with any health issues either. Plus I have this stupid fake tumor crap that has me off soy, MSG and a bazillion fruits and veggies or I will lose my vision in my left eye. Permanently. The neurologist said that one of the contributing factors to this was my weight, which I couldn't control because of my stupid celiac that no moronic doctor ever managed to diagnose.

 

When I was diagnosed with celiac a doctor told me to more or less stop having dairy and to go home and google gluten free and best of luck.

 

So, here I am... just over a year after my diagnosis. I am thrilled to have been diagnosed. I feel better (really I do) than I have in a long time. (CRPS aside) I'm not saying I feel good. And I know that because I have CRPS that I never will. I also know that, because I had celiac for 34 years undiagnosed, I will spend the rest of my life with lasting effects. Some specifically caused by the celiac itself, the fog, aches, bowel issues and whatnot are largely non-issues at this point. On the other hand, many people have many issues that never get better. I have an issue that will worsen for the rest of my life. I have accepted this for what it is and simply look for ways to manage at this point and I think that is what we need to accept sometimes.

 

I just thought maybe it would help to know you aren't alone in stuff. Doctors seem to think, and seem to imply to us that going gluten free is a magic bullet to our symptoms. It isn't always. I am not a patient person, but if there is one thing you will learn from celiac, it is patience. Even if it has to be beaten into you.

[1desperateladysaved]

Popcorn is corn, Ya know?

 

I hope you are feeling better soon.

[GFreeMO]

Adalaide, if celiac isn't bad enough, you have to go through all of the other crap.  I'm struggling with just the celiac and thats bad enough.  I hope that you finally will get some answers and get the help that you deserve!  I went to 2 doctors to try to get a fibromyalgia diagnosis.  They sent me out the door with antidepressants.  Didnt help so I went off of those.  I know that I have it but can't get a diagnosis for that either.  Fibromyalgia can add to the bowel issues because IBS is part of all of that.  I can really understand your frustration with trying to get a diagnosis.  Hey, at least we both finally got the celiac one.  

 

desperateladysaved, yeah..I know..I was doing a test.  Dumb I know.  

[Adalaide]

But see, my point is that all this other crap is just piled on because the celiac was undiagnosed for so long. Some days I'm bitter. Mostly though I just try to let it go because there isn't really a damn thing I can do about it except to simply accept my life as it is now and do what I can to make it better.

 

My first "chronic" diagnosis was actually fibromyalgia and that was a few years ago. After several months gluten free, it really helped a lot with the pain from all that. It really only gets truly bad again when I am glutened. I've just began wondering though with all my other Addison's symptoms if it isn't truly a symptom of that rather than simply fibro.

 

Hopefully the meds, when you can get them help you. I've been on Cymbalta and Lyrica and both were completely useless to me. Lots of people say they help though so hopefully you'll be one of the ones they help.

 

I know that the frustration is the worst. Like I said, I just wanted you to know you aren't going it alone.

[GF Lover]

1. Life stresses will get anyone off balance for awhile.  Eat right and keep your feet on the ground.

2. Recheck all your meds and supplements. 

3. Start that food journal to get down to your basic foods.

4. Not all aches, pains and conditions come from celiac, there are a number of autoimmune diseases that should be treated separately along with gluten free.

5. Some diseases come along that have nothing to do with all of the above. But all of the above will most likely help you through your next crisis. 

 

2 vegetables per day, 2 fruits per day, 1 meat or fish per day, easy on beef and buffalo is good for you. Throw in some seeds, nuts, eggs, salads and voila, the perfect celiac and disease fighting diet.  And always low sugar.

 

Good luck and keep at it and work on that positive attitude,  play ABBA if you have to. That does it for me.

 

Colleen 

[GFreeMO]

Thanks everyone for the advice and support.  It means so much to me.  One of these days i'll get this all figured out.  

[bartfull]

CHECK YOUR MEDS! Almost ALL pills are full of corn starch.

[Takala]

Never assume the word "organic" means "less likely to have been in contact with gluten" 

[CaliSparrow]

Is there anyone out there who goes through their first year of this and say it's not daunting??

I'm so sorry. Stress exasperates this as well (as it probably does everything). I screwed up Saturday and ate a piece of chicken at Whole Foods without questioning that it could have broth in it or something not listed on the label (or CC). Then did it again on Sunday! My arms are so weak and have rash of petechaie. I had been gluten-free longest ever for 35 days. Started this at end of October 2012. Hematology appt is on the 20th. Last two blood labs showed miraculous rise in Ferritin & Hemoglobin which said a lot to me. Neutrophils and lymphs off kilter but figure because of the hell this is putting my body through. Of course, because I'm not feeling well, I worry that something else more sinister could be wrong.

Lesson #3726385958: Don't go to an eating establishment overconfident and famished.

I have to go visit my ailing, elderly parents today. Would also like to send niece's shower gift, make soup for a friend having hysterectomy today who lives 80 minutes away (along with driving it to her) and must call mother-in-law to discuss travel plans for wedding. Need to go to blood lab today to prepare for next week's appt. Seriously doubt I'll accomplish but the bare minimum. Just feel like a schmuck. My body is under attack and my outlook is not so happy, chirpy.

Oh, and the water heater broke :/

I hope you feel better soon. Please report when you do because I need something to go on! Thanks for letting me rant here on your thread. I don't hear of many stories where someone starts the diet and then are diagnosed three years later. At least they'll listen to you now (hopefully!). Maybe this helps you in knowing you are good at listening to your body?

Take care,

Cali

[alesusy]

thanks you all, you are such a comfort for being there.

I've been gluten-free for a little over three months now and my GI issues are still there on and off and I have bad days and better days even when I'm positively sure that I have not been glutened. I'm keeping a food diary and trying to keep me to the simplest possible diet. I've cut out dairy and in the last weeks also wine because it really does not agree with my bowels.

Indeed it is hard. Not the eating (that's all right) but feeling so often tired, just - awfully tired - and my colon playing at knotting itself. Since you all tell me that it is going to get better (repeat it, please...?) I'm more than willing to believe it...

 

One question though. I guess to do a really useful experiment I should cut out all sorts of cereals for a few days, right? That's going to be hard. And then, which is the most likely NOT to bother me? I adore rice and It seems to me that almost nobody is quoting rice as a possible culprit...

 

alessandra from Rome Italy - DX in January but gluten-free since beginning of December - severe lactose intolerance too and waiting for a whole host of labwork on glicemia, tyroid antibodies etc

[GFinDC]

Hi Mo,

 

I hope the doctor who told you that you never had celiac disease got an earful!

 

Aleuesy,

 

Rice can be a problem just like any food can be a problem.  The simple way to find out is to eliminate it from your diet for a couple weeks.  Actually, elimianting all grains for a couple weeks and then adding back one item at a time is a good way to go.

[Gemini]

Hi,

I'm going to make this the condensed version.  

 

Gluten free for 3 years and doing ok.  Had several life stresses like illness in the family, both of my dogs that we had for 14 years passed and had to move to another state.  Went to a doc who said I never had celiac and that I had severe IBS due to those stresses. I started eating gluten again.  I was "ok" for a month or so and I blamed any symptom that I had on "IBS"  then I went back to that doc b/c I started getting migraines and a rash (which I now know is DH) all over my body and severe joint pain.  She ran a lupus test. Neg.  My blood test showed elevated liver enzymes.  She sends me to a GI who then diagnosed me officially with celiac disease back at the very end of Jan.

 

The symptoms that have subsided are the joint pain, muscle pain, migraines. My GI issues and DH are persisting.  I have lower intestinal pain, light colored floating stools with oily or a mucus type discharge.   TMI but my stool sinks then floats back up.  I believe this is fat malabsorbtion.  

 

I don't eat any packaged foods..nothing..and I don't ever eat out.  I gave up corn and soy and dairy.  On Sat.  I made some organic popcorn and I woke up the next day with the damn DH EVERYWHERE and intestinal pain, floating stool and the mucus again.  

 

I don't get it!  I am getting really annoyed with the GI issues.  I sort of feel like since I am eating gluten fre now that I shouldn't be having these issues anymore.  

 

Does this just take time?  Does it take a while for the GI issues to resolve?  My GI said that I probably had celiac for the last 14 years and didn't know it.  

 

I just want to take my diagnosis and eat gluten free and put this ALL behind me but I can;t when I have a searing gut and raging DH every day.

 

 As one who had severe fat malabsorption and horrific GI symptoms, I get how bad this is for you.  That will take time to get better BUT you really need to be using digestive enzymes because otherwise, you won't be able to eat any fats for awhile until your gut is working better again.  Your pancreas is probably not working properly, either, and this would be the direction you have to look if you have "floaters".  Between that and the damaged villi, certain foods are going to be off limits for a bit.  I still cannot digest lamb and had to give it up because, each and every time I ate it, it came back up the same way it went in and I apologize for that visual but that's how it is.  Lamb is very fatty and I just cannot digest the stuff.  There are messenger chemicals that are released by the small intestine to your pancreas that call out for specific enzymes to be released for digestion but if your small intestine is compromised, then the message doesn't get sent and your pancreas can atrophy a bit.  I think this is what happened to me because there are still foods I cannot eat without enzymes....fats.

I will always have trouble with certain fats.  Doesn't mean I can't eat some, and it has gotten much better, but lamb and fast food are out forever.  I can live with that, though.

 

Forget popcorn for now...hard to digest and it obviously caused a DH flare.  I use Digest Gold enzymes and they work great for me but I am not sure if they are soy and corn free also. You can check this on-line if you are interested.

 

I have to add this comment and I hope I don't offend but fibromyalgia and IBS are not a diagnosis of anything.  It's the thing they do today....put a label on a set of symptoms and then treat the symptoms.  These symptoms you are having, the ones that come with those labels, are all symptoms of celiac or some other food intolerance or allergy. Or you could have another AI disease...a real one that isn't a labeled symptom, that they are missing.  I get joint pain if my thyroid gets too low but otherwise....no joint pain.  All I know if a doctor even mentions IBS, I rip them a new one because it's total nonsense.  You are experiencing symptoms of Celiac and I think the one that told you it wasn't Celiac should be dope slapped because you just re-injured your gut. 

 

The DH is a problem because it can take up to 2 years before the deposits clear up from your skin.  I hate to say that but this is what I have read.  The stress is most definitely causing things to be worse but life is just chock full of stress these days so it's hard to isolate yourself from that.  I'm sorry about the dogs....I put mine down 5 years ago and still miss her deeply.

She was special to me so I feel your pain on that one.

 

You will have to go back to basics.....even more basic than what you do now and please take some form of digestive enzyme and a good probiotic.  It really does help but at least take a digestive enzyme because you need help digesting your food right now.  That's what happened to me and it was horrible.  I wasn't absorbing anything I ate at the end and if you want to heal, you need to take the enzymes.  Keep that diary to document what you react to but hopefully, if you can at least digest what you do eat, things will start to turn around.

 

Maybe you should have a scope to see if there is anything else that is causing you grief?  An ulcer perhaps?  Have you been checked for H. Pylori?

[Gemini]

thanks you all, you are such a comfort for being there.

I've been gluten-free for a little over three months now and my GI issues are still there on and off and I have bad days and better days even when I'm positively sure that I have not been glutened. I'm keeping a food diary and trying to keep me to the simplest possible diet. I've cut out dairy and in the last weeks also wine because it really does not agree with my bowels.

Indeed it is hard. Not the eating (that's all right) but feeling so often tired, just - awfully tired - and my colon playing at knotting itself. Since you all tell me that it is going to get better (repeat it, please...?) I'm more than willing to believe it...

 

One question though. I guess to do a really useful experiment I should cut out all sorts of cereals for a few days, right? That's going to be hard. And then, which is the most likely NOT to bother me? I adore rice and It seems to me that almost nobody is quoting rice as a possible culprit...

 

alessandra from Rome Italy - DX in January but gluten-free since beginning of December - severe lactose intolerance too and waiting for a whole host of labwork on glicemia, tyroid antibodies etc

  It will get better....it will get better.....it will get better. 

 

Rice is one of the least allergenic foods out there.  Very few people are rice intolerant or allergic.  That's why one of the first cereals that are given to infants is rice cereal....easy to digest and pure.  I am not a big fan of cereal myself because gluten-free cereal is not very good and it's loaded with sugar.  I tend to eat more protein these days.  You could try Cream of Rice but you would have to make sure it is gluten-free and not cc'd.  Maybe make some breakfast risotto and add nuts or raisens and a little sugar?  There must be gluten-free arborio rice in Italy!

 

I feel so bad.....you are in Rome, the epicenter of gluten and wine and you can have neither?     The gluten is easy to dump but no wine??????    Italy does produce amazing gluten-free pasta so if you need a recommendation, let me know.  Hang in there because 3 months is not very long to be gluten-free and things will improve over time.

[JNBunnie1]

MO, yes to the digestive enzymes and probiotics. Also please consider activated charcoal.

It's what they give people after a drug overdose, and can be picked up at pretty much any

health food store. I used it the last time I was glutened and it was like magic. Be aware that

if you do take it, charcoal should be taken at least two hours away from any other medication

or supplement, because it will suck them up and keep them from working.

 

I've been wondering if anyone with DH has had any relief from charcoal. I think I'll go ask on

the DH board...

[GFreeMO]

Gemini, thanks so much for all of your help and advice.  I am going to get some digestive enzymes, drink my water and be extra careful and realize that this is all going to take time to feel better and to heal.

 

Bunnie, thanks for the info on the charcoal.  I never would have thought of that.

 

Everyone else who responded, thanks so much for the support and help.  It means so much to me!

 

-MO