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Super Cranky, Terrible Day. Thinking Of Hunger Striking

user001

By user001
in Coping with Celiac Disease

Recommended Posts

moosemalibu Collaborator
moosemalibu
Posted

I feel like this today. Everything is just too much for me. When I get home from work and work out I hope it will be better. If not, there is always tomorrow. Right?! Tell me I'm right!? *desperately searching for affirmations* The struggle is real. ((Hugs to OP)) sorry I hijacked your feelings.

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FruitEnthusiast Enthusiast
FruitEnthusiast
Posted

Jamie, so sorry to hear that :(  We're all in this together.

 

I'm also having a bad day and discouraged... yesterday was a great day. It changes so fast and it's hardest having a bad day after a good one. It's like a wave we ride as it goes up and down. When it's down, it feels like it won't go up again... but it always does!

 

I'm trying to remember that the good days are my life, and the bad days are just a temporary interruption, until I'm back to feeling like who I really am again. That could be as soon as tomorrow or even later today!

moosemalibu Collaborator
moosemalibu
Posted

Thanks Sara! ((hugs)) It is like a roller coaster... good days and bad days and twists and turns and upside down and all around. Most days are good.. but when they are bad.. they are BAD! The mental and physical draining takes a toll.

FruitEnthusiast Enthusiast
FruitEnthusiast
Posted

I know... the bad days are soooo BAD... and so long. It make me question my entire plan. Am I eating the right things, is there something I'm not doing? I want to outsmart the process somehow but I think it's really out of my control. I can't possibly do more than I'm already doing.

 

I wish I could take a day off from all of it, eating, water, supplements, and not think about it, just be... for one day. I figure I don't dare drop the ball though, so I try to stick to my plan.

 

I'll be glad when I get to the most days are good stage, I'm not there yet, but it gives me hope that I will be. That helps a lot. I believe I will get there.

beth01 Enthusiast
beth01
Posted

I didn't find out squat today.  My doc sent a referral for rheumatology.  A fat lot of good that did, they can't get me in until July 25th!!! Why the hell they think I can wait that long when I am in this much pain is beyond me.  The doc wrote me a script for some form of anti-inflammatory since my GI doesn't want me on narcotics (the 2 I'm not allergic to) since I already have problems with slow movement. Luckily for me the computer system was down at the pharmacy and they couldn't fill my prescription.  Some day's we have all the luck.  I was told to call the doctor's office every morning to check for cancelations. It's not like I have anything better to do. They also drew a lot of labs, 7 freakin vials.  Bad day, rant over.

user001 Contributor
user001
Posted
  • Author

Watch out for those anti inflammatory drugs. They are really harsh, thats why im in the position im in with the ulcer.Beth you should really try sucking down some ginger, it really is the only thing that helps my back. Although nothing seems to help today.

 

I have a endoscopy for the ulcer and celiac tomorrow. So nothing that might potentially thin the blood like ginger. I can barely make a fist today and it hurts to even press down on my feet to walk. My arms are continuing to go numb pretty frequently. my legs arent as bad, but still they go numb on occasion. I think the doctors main concern is the ulcer because he told me to stay off gluten. So i don't even know if he plans on checking me out for celiac tomorrow. He may be willing to make the celiac diagnosis from the blood? who knows.

 

I ate oatmeal for lunch, in case hes a quack and doesn't know what hes doing. He was on this website and others as a doc that treats celiac patients. I figure some cross contaminated quaker oatmeal might do the trick because I know it sure makes my intestines burn a bit. It also makes me like narcoleptic tired, which seems to be an indicator for me being contaminated. I go in at 6am and they said I should be out of sedation by 9. How exciting, meanwhile im signing over my life in case something goes wrong. I have never had surgeries or been under any sedation.

 

At this point my main worry is that they will find stomach cancer or something. This is the second time Ive had an ulcer from taking all these NSAID drugs for all my aches and pains. everything on me takes forever to heal, it always has. I got a flu shot in november, i had a bruise on my arm for 3 weeks and my arm is still tender. I also had the 3 shot series of hepatitis B shots around the same time and i can still feel where the last one was given. I thought I was healing quicker but i guess not.

 

Today is another down in the dumps day. I ate the oats, now im tired and depressed and just want to snuggle with my cats and I was tomorrow to be over already. Im hoping to feel better by saturday because some friends invited us to shakespeare in central park and we wanted to hit a bbq in brooklyn too. I REALLY want to stop by Jennifer Esposito's celiac friendly bakery on the way from brooklyn to central park. If i could have a freaking gluten free bagel, I would die a happy death!

beth01 Enthusiast
beth01
Posted

I am a pro at surgeries!  The endoscopy really isn't bad.  They start an IV on you, and give you a little something to calm down (at least they did me).  They ask a lot of questions, then you talk to the doctor who is going to explain the procedure, they tell you they are going to give you a little something to help you sleep, then BAM, you wake up.   A little groggy at first but it isn't bad.  My big thing was I thought I was doing so well and then I woke up the next day and didn't remember much from the day before.  I went grocery shopping after my procedure with my mom. She said it was quite the trip lol.  I had also been in the hospital for a few days previous so I was eager to do something not bed related.

 

I have been trying to not take a lot of stuff for the pain, but it's getting pretty bad.  I just have to keep hoping that someone cancels soon so I can get in to see the rheumatologist soon. I lost more weight too, pretty soon there isn't going to be anything left.

 

Sorry you are having such a bad day.  Hopefully soon we can celebrate some good days.

 

I am going to my first support group meeting on Saturday with my daughter so I am kind of excited about that, and so is she.  We even get to eat in a restaurant lol.  If it's good enough for the other celiacs, it's good for me.  Maybe you could look and see if they have anything like that in your area.

 

On another note, I found out that a woman running for Miss Wisconsin is a celiac and that is her platform.  Kind of neat.  She is trying to start a children's support group in this area if there are enough children.  Another kind of exciting thing for my daughter.

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user001 Contributor
user001
Posted
  • Author

That's really good Beth. The support group should be good for u two. I really hope we make it to NYC on Sat, because I know I will probably find some really awesome gluten-free places there like Jennifer's bakery.  just hope I'm feeling up to it! 

beth01 Enthusiast
beth01
Posted

Yes, it really is hard to make future plans these days. You just never know how you are going to feel on a day to day basis.  I hope you are up for it, those bakeries that make the gluten free goodies are so much better than the crap you have the option to buy in the store.  I think I need a peanut butter chocolate chip cookie now.  LOL

user001 Contributor
user001
Posted
  • Author

Oh beth! my friend is a model and has a recipe for grain free peanut cookies! I would imagine that you could add chocolate. I need to get that recipe!

beth01 Enthusiast
beth01
Posted

There is a bakery a few towns from me that does gluten free on Wednesdays.  I have some of the cookies in my freezer lol.  They are delicious.  I just don't eat them that often since the whole sugar thing is a bother for me. On a brighter note, I took Lactaid for the first time last night and had a 1/4 of a cup of ice cream.  Probably the best ice cream I have had.  Or maybe it's because I haven't had it in a while.  DQ just brought their Smores blizzard back the bastards.  I have to go by that retched place everyday and that was my absolute favorite blizzard of all time.

user001 Contributor
user001
Posted
  • Author

So just to keep you all posted. I went in at 6am for the endoscopy, after prep it was 7 am when i got wheeled into the operating room. They hooked me all up and the nurse put a mouth piece in my mouth and around my head and was telling me how its tight but she will loosen it up and WHAM, i don't remember a single thing after that till i woke up about 40 minutes later in recovery to a super b*tchy recovery nurse. I imagine i was only in there about 10 minutes or so and they made me get up and go sit in the other room and have my iv taken out and try to feed me a slew of glutenous crackers and cookies. I was like I TOLD THE PRE OP NURSE I CANT EAT GLUTEN. freaks. i dont even understand people sometimes. My doc also knows I have been eating gluten free and wants me to continue.

 

He said the ulcer looks like its almost gone, but he wants me to continue for another month on the prilosec to make sure. He also took a biopsy of the stomach to test for the h pylori virus because the other tests can have a false negative frequently. He thinks the ulcer was caused by the NSAID drugs, but wants to cover all his bases since it will just come back no matter what if the bacteria is present. He took a biopsy of the small intestine, he seems to think that I have had celiac disease my whole life and therefore the intestines will still show enough damage to diagnose me as celiac without going back on gluten. I hope so.

FruitEnthusiast Enthusiast
FruitEnthusiast
Posted

Excellent news about the ulcer improving! That must be a load off your mind. Really glad to hear that!

 

I had an endoscopy once and had the same experience. When I woke up I didn't realize it had already happened. I wanted to keep sleeping in the recovery room I guess and they had to make me leave after a 1/2 hour, I wasn't happy to have to get up and walk around and I remember them being very insistent about it. They were like... thanks for coming and everything, but, goodbye!

 

Don't people know at this point that there are many people out there with problems eating gluten, especially nurses...sheesh!

 

Thanks for the update :)

user001 Contributor
user001
Posted
  • Author

I would also like to note that the pre op nurse called me on the phone specifically to ask if I had any dietary restrictions, I also brought a snack but they refused to let me eat it.

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      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
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      By trents · Posted

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    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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