Enough! I Just Need It All To Stop!

[book-worm]

I just want to turn the clock back 12 months to when I wasn

[lizzers]

I was in the same position as you - but was feeling bad for more like 15 years, in the end I went and got some antidepressants/ antianxiety meds because being sick was really getting me down. You get to a point where you think that nothing will ever make you feel good again, and to where you are cutting back all of your food to where you eat nothing and still have gut - aches...

But with this I'd say - just keep trying and use whatever crutch in the interim to make you feel mentally better - because it might be a while for a diagnosis..

[KimK]

I'm in the same boat as you are, right now. Once a month I'm sick, so sick I have to drag myself to the ER for an IV of anti nauseants and pain killers, even the ER dr's are getting annoyed with me, but my dr's can't find anything wrong with me. I have been on the gluten free diet for 6 months, it really helped at first, I wasn't sick for maybe a couple of months, but it crept back up and in the last 4 months I've been to the ER 6 times (I am also no where near sick as many times as I was previous to going gluten free).

Every test I've had has come back fine, stomach scope, colonoscopy, xray, ultrasound, blood tests.. It's like the dr's have run out of things to test for.. My GI suggested I try gluten free, and well I've stuck to it every since as I did see major improvement at first.

And on the family thing, I hear all the time that I must enjoy being sick, it's not the gluten, eat some bread..(my mom is in denial)so you are not alone there... I haven't been able to hold down a job for the past few years, I haven't had one month without vomiting at least once.

And I totally hear you about friends, mine know how sick I've been, so there's some compassion there, but I've had texts telling me it's "lame" that I have to cancel plans due to bouts of vomiting.. that one hurt just a bit..

It does make me feel a bit better I'm really not the only one..

[New-To-This]

I understand how frusrated you are! Still dealing with frustrations of our own. I think it might be time to check other food intolerances, not just gluten. Other foods can and will give you intense intestinial issues depending on the severity of your intolerance. If your docotr is not very understanding and supportive it might be time to find a different doctor. There are still a lot out there that don't understand Celiac and think its all in your head. If you have been gluten free for a year, nothings going to show on your gluten test results as unless you have been getting several cross contaminated the entire time. I hope this is helpful.

[tictax707]

I was in a similar boat when I first got diagnosed. I was negative for everything - no deficiences, nada. They only did the endoscopy + biopsy because it was the only thing they hadn't yet tested for. My Gi doc had to be very specific and insist that they do the biopsy no matter how things "looked." Because sure enough, they "looked" fine even when they finally went in to do the endoscopy. When the biopsy came back my villi were flat as freakin pancakes. The other posters are right in that you should also check for other food intolerances. Personally I also had lymphocytic colitis which would flare up randomly without warning and make me miserable even after going gluten free. It drove me BONKERS, and it took a full year for me to figure out that lymphocyctic colitis was my 2nd culprit. Now I have meds to help control the colitis and life is managable again... And we are here for the venting! Hope it helped.

[Ahorsesoul]

Gluten can cause these feelings. Have you gone to a specialist in Celiac Disease?

[miaryan]

I'm so happy i'm not the only one in this world that is feeling so sick! my parents bug me everyday asking how i'm feeling i always say the same! i can't help it i feel sick everyday!

so sick of going to the dr's every week for a dr's note for work saying i won't again be in this week!

so sick if my mother-in-law giving me the look like whats wrong now and why aren't you going in today?

she doesn't believe me that i'm in alot of pain. sometimes i wish i could give her my pain for at least a week and see how she likes it.

my hubby has been good but some times i wonder if he's not telling me everything.

once again just venting! glad you are all here and backing us up and knowing we aren't the only one not feeling good!

Mia

[book-worm]

Wow! Thanks guys, that helped so much.

It was sooooo good to say all that and not feel like I was talking to a brick wall.

I tried talking to my mother about all that just before I wrote it, and the best she could do was say

[T.H.]

Oddly enough, your name made me think of something you might want to add to your test list! :-)

parasite infections: they can cause all sorts of gut issues, they can be affected (positively and negatively) by what you eat, and a lot of doctors don't test for them. If you had one along with other food issues, I wonder if that might help explain some of the up and down issues with things?

And sympathy for the frustrating doctor and family experience. Been there, still there in some cases, and yeah, it's...it hurts, and it's demoralizing, too. Here's wishing for better things for you soon!

Wow! Thanks guys, that helped so much.

It was sooooo good to say all that and not feel like I was talking to a brick wall.

I tried talking to my mother about all that just before I wrote it, and the best she could do was say

[gary'sgirl]

I'm in the same boat as you are, right now. Once a month I'm sick, so sick I have to drag myself to the ER for an IV of anti nauseants and pain killers, even the ER dr's are getting annoyed with me, but my dr's can't find anything wrong with me. I have been on the gluten free diet for 6 months, it really helped at first, I wasn't sick for maybe a couple of months, but it crept back up and in the last 4 months I've been to the ER 6 times (I am also no where near sick as many times as I was previous to going gluten free).

Every test I've had has come back fine, stomach scope, colonoscopy, xray, ultrasound, blood tests.. It's like the dr's have run out of things to test for.. My GI suggested I try gluten free, and well I've stuck to it every since as I did see major improvement at first.

And on the family thing, I hear all the time that I must enjoy being sick, it's not the gluten, eat some bread..(my mom is in denial)so you are not alone there... I haven't been able to hold down a job for the past few years, I haven't had one month without vomiting at least once.

And I totally hear you about friends, mine know how sick I've been, so there's some compassion there, but I've had texts telling me it's "lame" that I have to cancel plans due to bouts of vomiting.. that one hurt just a bit..

It does make me feel a bit better I'm really not the only one..

Hi KimK, I just wanted to tell you that you could be having gallbladder problems. I had intense pain and vomiting about once a month for 2 years (with a few breaks here and there) and finally found out it was gallbladder attacks. I had stones in my gallbladder by the time they took it out, but I don't know if I started with them or not. My Dr. said that sometimes the gallbladder has problems without having any stones. Your doctors may have checked for that already, but I thought just in case I would share the info. The attacks were some of the worst pain I have ever experienced. Hope you figure out what's wrong.

[book-worm]

Yeah, my doctor did test for intestinal parasites, like everything else it was clear. The only thing that showed up for the first time in the last blood test was slightly elevated liver enzymes,

[mushroom]

I think it is time to do something else to help yourself since no one seems to be offering anything else.

I'm talking about digestive enzymes to help you digest your food. It is probable that you have an impaired GI system, and that your pancreas is not currently functioning as it should. The enzymes provide the gut with what it needs to break down the fats, proteins and carbohydrates, as well as adding some digestive acids. A good probiotic would probably not go amiss either to balance out the bacteria in the gut.

What is your current diet, because that could provide some clues of where some additional intolerances might lie. Often we have to give up more than gluten at the start until the intestines heal, which could take several months. Tell us what you are eating and we might be able to offer further suggestions.

[AKcollegestudent]

I'd recommend a food elimination diet, or at the very least, cutting out dairy and soy and maybe even the rest of the major eight allergens.

For me, I get massively ill if I have soy and was--though it's getting better--breaking into hives when I ingested dairy. So removing gluten helped, but it clearly wasn't the only problem.

[JNBunnie1]

You say this illness is striking once every month or so. Can I ask if it' always the same time in relation to your cycle? Hormones have been known to cause nausea! It may be that.

[caboheidi]

I'd recommend a food elimination diet, or at the very least, cutting out dairy and soy and maybe even the rest of the major eight allergens.

For me, I get massively ill if I have soy and was--though it's getting better--breaking into hives when I ingested dairy. So removing gluten helped, but it clearly wasn't the only problem.

What are the eight allergens?

[AKcollegestudent]

What are the eight allergens?

* Milk

* Eggs

* Peanuts

* Tree nuts (such as almonds, cashews, walnuts)

* Fish (such as bass, cod, flounder)

* Shellfish (such as crab, lobster, shrimp)

* Soy

* Wheat

I've got three of the eight, though wheat is out for celiac reasons and not a true allergy. A lot of my friends who have one issue end up with multiple "top eight allergen" issues, and others start with a minor reaction and get worse.

(And there are plenty of people on the board who react to allergens that aren't listed here. For me, this was a starting place and I was lucky to not have to go further. YMMV.)

[Black Sheep]

The only thing that showed up for the first time in the last blood test was slightly elevated liver enzymes,

[KateGrace]

Actually, the easiest way to "detox" the liver is to avoid animal proteins and fats. Gerson therapy, which is a well-known alternative cancer treatment, is entirely based on the cleansing of the liver. It advocates fresh juices and bans any meat, fat, and most dairy.

Besides secreting bile (carrying liver waste), the liver has two vital functions: breaking down and eliminating toxic substances; and metabolizing fats and synthesizing blood proteins.

So whenever I want to "cleanse" myself, I just go vegan for a week and cut down on olive oil. I've always heard that most vegans feel "amazing" for the first year or two of the diet...then, of course, get sick, because animals proteins are necessary. But in the short term, it's a great cleanse for the liver and the body!

[Lexi]

I understand!!! I really need to vent sometimes too (Luckily I have a very understanding husband). My family was so supportive at first (those who believed me, that is), but now it's like they just don't want to hear about it anymore. I know what you mean, I NEVER know how the day is going to be when I open my eyes in the morning. It's so frustrating! Every time I think I have turned a corner, I have some kind of health issue again - pain, headaches, bloating, flu-like symptoms,stomach issues, diarrahea, constipation, weight gain / weight loss, hairloss, candida, and on & on, you name it Ive had it. I hate making any type of plans. Sometimes it just FEELS GOOD to VENT because it is REALLY HARD to live like this. But, we just have to take one day at a time, and get through this life we have been given the best we can. It's defintiely hard, but I cherish every good day that I have now.

[K8ling]

I totally understand. Last year after I had my son, my husband deployed and I was constantly feeling sick. First they blamed my birth control, then they blamed my gallbladder, then they blamed stress because my husband deployed leaving me with my 6 month old and tried to put me on PROZAC (which anyone who knows me knows that is NOT the right answer for me). This past month after digging up my family history I went back to the doctor who gave me blood tests (but still said that it wasn't inconceivable for it to have been stress..jerkface). When I told him I had cut gluten out as an experiment and then had a bowl of cheerios and wanted to die, he looked a little more convinced. Now I know for sure I have a Gluten allergy (as well as coconut) and I hope he feels bad for pawning off my symptoms as "new mom stress".

Hang in there, I totally understand the frustration, which is why I am on this board!