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What To Do When It Seems Like It Just Isn'T Worth It


MagpieWrites

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MagpieWrites Rookie

What keeps you going gluten free when you are just tired, sick, and frankly wondering if its worth it?

I know going gluten free is the best - heck, only - thing for my body. But I'm just feeling pretty wrung out and wondering why I'm bothering at the moment. I was diagnosed in June with celiac and the first month was a bit bumpy as I started to relearn how to cook... but I was hopeful. A diagnosis at last! I was going to be healthy, get my life back.

But at the 4 week mark, just as my system started to feel better and I got energy back - I got hit with a tidal wave that has kept me under and ill ever since. We heat with wood, so July sees my husband and I tramping around carting lumber in all our free time. During one of those tramps I was bitten (really more chewed) by a brown recluse spider (a growing issue in this part of the country). It went septic and caused all sorts of badness. THAT set off shingles that had been slumbering in my system apparently. Not.. how I planned to spend my summer, fall, and 30th birthday. From the shingles, I still wasn't getting better. Fevers, round after round of antibiotics trying to battle some mysterious infection the doctors couldn't find... Ick. Last in the battle, a sudden searing pain in my jaw - the kind that makes it hard to breath and sorta wish you'd just die already. An emergency jaunt to the oral surgeon to discover a THIRD set of wisdom teeth had erupted at some point in the fall - and had all gotten infected in the back where they couldn't be seen. (If you are wondering who I pissed off in a past life, join the queue! When they told me it was a 3rd set of wisdom teeth... I started getting REALLY nervous in storms. My luck, I'm the perfect height for a lightening rod!)

Rather surreal to have a dentist looking at you in shock, trying to calmly inform you that had it gone the other way in a 50/50 split and the infection had just killed the nerves and not caused the pain.... the next thing would have been systemic and massive organ failure - that my body would have been too whomped to do much about. IE - dead. I've heard people say they would rather die than go to the dentist... but this was going to the extreme. (And why yes, my humor tends towards the sarcastic... )

So really... I feel like crap. I know I'm finally on the upswing, I know I'll finally start seeing some improvement and feel better at last here soonish, but. Crud. I don't know. I want a slice of REAL pizza. I want my mom's bread pudding. I want dinner to be EASY to plan tonight and not involve me staring at the stove and fridge for 2 hours. Intellectually, I know that gluten free is the only way. That there ARE good and tasty foods. That this is just one last little hump to crawl over (my mom's favorite phrase of "You've swallowed the elephant, don't go choking on the tail!" keeps running through my head), but, but... but.

How do you keep going when you don't see the benefit of gluten free eating? If you are still nauseous, still tired, still sick what keeps you on track?

Help?


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YoloGx Rookie

What keeps you going gluten free when you are just tired, sick, and frankly wondering if its worth it?

I know going gluten free is the best - heck, only - thing for my body. But I'm just feeling pretty wrung out and wondering why I'm bothering at the moment. I was diagnosed in June with celiac and the first month was a bit bumpy as I started to relearn how to cook... but I was hopeful. A diagnosis at last! I was going to be healthy, get my life back.

But at the 4 week mark, just as my system started to feel better and I got energy back - I got hit with a tidal wave that has kept me under and ill ever since. We heat with wood, so July sees my husband and I tramping around carting lumber in all our free time. During one of those tramps I was bitten (really more chewed) by a brown recluse spider (a growing issue in this part of the country). It went septic and caused all sorts of badness. THAT set off shingles that had been slumbering in my system apparently. Not.. how I planned to spend my summer, fall, and 30th birthday. From the shingles, I still wasn't getting better. Fevers, round after round of antibiotics trying to battle some mysterious infection the doctors couldn't find... Ick. Last in the battle, a sudden searing pain in my jaw - the kind that makes it hard to breath and sorta wish you'd just die already. An emergency jaunt to the oral surgeon to discover a THIRD set of wisdom teeth had erupted at some point in the fall - and had all gotten infected in the back where they couldn't be seen. (If you are wondering who I pissed off in a past life, join the queue! When they told me it was a 3rd set of wisdom teeth... I started getting REALLY nervous in storms. My luck, I'm the perfect height for a lightening rod!)

Rather surreal to have a dentist looking at you in shock, trying to calmly inform you that had it gone the other way in a 50/50 split and the infection had just killed the nerves and not caused the pain.... the next thing would have been systemic and massive organ failure - that my body would have been too whomped to do much about. IE - dead. I've heard people say they would rather die than go to the dentist... but this was going to the extreme. (And why yes, my humor tends towards the sarcastic... )

So really... I feel like crap. I know I'm finally on the upswing, I know I'll finally start seeing some improvement and feel better at last here soonish, but. Crud. I don't know. I want a slice of REAL pizza. I want my mom's bread pudding. I want dinner to be EASY to plan tonight and not involve me staring at the stove and fridge for 2 hours. Intellectually, I know that gluten free is the only way. That there ARE good and tasty foods. That this is just one last little hump to crawl over (my mom's favorite phrase of "You've swallowed the elephant, don't go choking on the tail!" keeps running through my head), but, but... but.

How do you keep going when you don't see the benefit of gluten free eating? If you are still nauseous, still tired, still sick what keeps you on track?

Help?

Yikes! a brown recluse and such a serious dental infection, that is a lot.

Sounds kind of like me your age, though I didn't know I had celiac, I did figure out I was "allergic" to all kinds of things including most of the wheat family.

You just have to keep trudging on at times like this. Some kind of meditation helps me. I do Hatha yoga. Going for walks. Go get a sauna and if you can manage it a massage. Doing some writing and/or art. Calling a friend. Watching a good movie or two or reading a good book.

Always helped me too to make up some herbal tea and do herbal investigations so I felt like I was nurturing myself.

Making the occasional legal gluten-free goodie helps too. Though given everything I would try to avoid sugary things. Use stevia for sweetener instead if you can.

A great pick me up actually is to blend up some fresh vegetables and drink. Really an ass kicker!

And think on this, at least you are only 30 and not nearly 60 when you figured out what you really needed to do to be healthy!

Bea

PS--do try taking olive leaf extract and/or tea if you continue to feel yucky. Helps kill off residual all kinds of things. If you get a Herxheimer reaction that actually is a good sign its working. Persist at a lower dosage and soon you will feel much better. Some dandelion root and/or other detox herbs may also be important given the possible residual poison from the spider. Avoid all alcohol tinctures/extractions due to likely gluten. Also enterically coated acidophilous is a godsend. You may be getting the blues due to all the antibiotics which saved your life but probably wrecked havoc with the rest of you. Plus hope you are avoiding all trace gluten. No kidding!

Ahorsesoul Enthusiast

You are amazing, you've had several brushes with death (recluse spider, 30th birthday, shingles and rare 3rd set of wisdom teeth) and you still are going with your great sense of humor!!!! You can do this!!

First find a store that carries Against the Grain pizza crust, drive half way across the country if you have too, so you can make yourself some pizza that doesn't taste like sawdust. Also grab some Udi's bread to make some bread pudding. You will feel so much better.

When I went gluten free I decided I was not 'living without'. I've learned to make my favorite meals gluten free and I found it was not as hard as I thought. I had to adjust my thinking more than anything. I am a quick cook person. I do not want to spend hours slaving over a stove. 2hrs, no way unless it's Thanksgiving and I'm making the Turducken!

Once a week take your favorite meal and figure out how to make it gluten free. Ask here, google it. You can find a way to do it.

You will feel so much better gluten free, you know how good it feels already. You've had your share of set backs, just keep some forward motion. You will get there.

P.S. Make sure that elephant is gluten free before swallowing or you'll have to pull it out by it's tail.

GFinDC Veteran

You know, one thing I think about, if I wasn't like this I might be like something else and it might not be a better something else. Celiac can be tough for sure, but at least we have a chance to get better with proper diet. After you have been at it a while the diet will probably seem easier to follow. At least it is for me after a little more than 2 years. I finally kicked soy completely out of my diet a few weeks ago and now feel much better. Sleep is improving, I have more energy, digestion is better, the sky is bluer, all good things. It's been a tough 2nd year for me but finding that one last (I hope) food problem has made a huge positive difference. So 2 years in I feel pretty good for a change after 12 years or so of not so greatness.

I made some mini muffins over the weekend and those are a nice snack. There's so much food to eat that doesn't have gluten in it after all. No need to fixate on that stuff. Just eat something else!

Did you hear about that kid out West that is 8 feet 4 inches tall? He would prolly make a better lightnin rod than you I bet.

Anyhow, relax and watch the boob toob, or take a nap, or do some art, or play some puter games or read the bible like a good kid would.

MagpieWrites Rookie

Thanks all. I know I need to keep trudging and that it WILL get better - I just needed a reminder that others have been there andtp put my head down and shove. Thanks for that. I'm definitely going to give a lot of the suggestions a try. I got myself up and about enough today to make the not terribly healthy, but still rather tasty, batch of gluten-free-chocolate chip cookies that are cooling on the counter. (Does brown rice flour mean they count as a good source of whole grains and fiber?) I'm going to look into some meditation and yoga info as I get a bit stronger - I'm still at the annoying "fall asleep at random moments" stage of getting better, and really.. I think that's the problem. I'm a happily confirmed fidgeting ADD twitcher - all this having to rest, stay still, and sleep is driving me batty!

Irritatingly, with all the weird things that happen - I'm STILL waiting for my dratted super powers. I mean, come ON. My entire right arm was chewed from wrist to elbow by brown recluse spiders. I should have gotten at LEAST x-ray vision by now!

Thanks again.

lynnelise Apprentice

What actually led me to a gluten free diet (I'm not diagnosed as celiac) is that vitamin deficiencies wore my immune system down so much that I was sick an entire year! I had three outbreaks of shingles last year, mono, the flu, strep throat 5 times (I don't even have tonsils), sinus infections, UTIs...ect. I know how you feel about being worn down and sick of being sick!

Of course my problems are miniscule compared to your near fatal dental infection and the brown recluse! I'm so sorry you've been through so much!!!

So basically I'm not much help except to say I know how frustrated you must feel! Also I wanted to second the olive leaf extract recommendation. It treats a whole myriad of things but taking it daily REALLY helps to supress shingles outbreaks!

Welda Johnson Newbie

I am in awe of you! I truly do think you have already developed your super powers, and they are the ability to find humor no matter what, the strength to put one foot in front of the other during the most trying of times (please don't trip on that supergirl cape), the courage to reach out for help, the stamina to just keep going, the determination to accept whatever comes your way with grace and dignity (a third set of wisdom teeth--golly gee, I've never heard of that happening), the articulation to share your story with others, the humility to accept what is happening with clarity and force, and, most of all, the good nature to open OUR eyes so we can be grateful that we are here to acknowledge your journey, and to accept that what we thought were our own challenges, were really somewhat miniscule in comparison to that with which you have been dealing. I hope you find your way successfully through the pain, the fog, and the uncertainty, to your path of good health. I feel privileged to read your story! Welda


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mysecretcurse Contributor

We have a lot in common. I also almost died from an oral infection! The only difference is I already have my superhero powers! ;) Hang in there girl... <3

VioletBlue Contributor

First off I love your sense of humor!

And to answer your question; chocolate ice cream.

Fortunately KNOCK ON WOOD lactose has never been an issue for me. So I made a point early on of always keeping a safe brand of chocolate ice cream in the house. On a bad day it can make up for a lot. So more generally I guess the answer is to find something you absolutely love and and make sure it's always around, whether it's food or music or a walk in the woods.

sandsurfgirl Collaborator

I can't believe you were hit with TWO major catastrophes like that. The spider bites alone are so dangerous!

Thank God you are on a gluten-free diet, because if you had not been diagnosed maybe the spider bites and infection would have been much more devastating.

Like others have said, you are amazing to come through this with such a great sense of humor! And don't worry about 30 girl! 30 is the new 20. I just turned 40 and despite all my celiac related sickness I feel young and my life is still really fun! You had the kindness to come and reply to my sad post and commiserate with me, when you have suffered so much, which shows your character as well.

When I am down I do two things. I pray and pray to God and I go to those who love me for support. I am processing a lot of emotions right now about my own situation but I know that I'm not alone and that when I pray I will get peace in my heart about this eventually. Big HUGS to you!! We can get through this and be the experienced ones giving newbies advice about "When I got diagnosed..." in no time.

DownWithGluten Explorer

What keeps you going gluten free when you are just tired, sick, and frankly wondering if its worth it?

I know going gluten free is the best - heck, only - thing for my body. But I'm just feeling pretty wrung out and wondering why I'm bothering at the moment. I was diagnosed in June with celiac and the first month was a bit bumpy as I started to relearn how to cook... but I was hopeful. A diagnosis at last! I was going to be healthy, get my life back.

But at the 4 week mark, just as my system started to feel better and I got energy back - I got hit with a tidal wave that has kept me under and ill ever since. We heat with wood, so July sees my husband and I tramping around carting lumber in all our free time. During one of those tramps I was bitten (really more chewed) by a brown recluse spider (a growing issue in this part of the country). It went septic and caused all sorts of badness. THAT set off shingles that had been slumbering in my system apparently. Not.. how I planned to spend my summer, fall, and 30th birthday. From the shingles, I still wasn't getting better. Fevers, round after round of antibiotics trying to battle some mysterious infection the doctors couldn't find... Ick. Last in the battle, a sudden searing pain in my jaw - the kind that makes it hard to breath and sorta wish you'd just die already. An emergency jaunt to the oral surgeon to discover a THIRD set of wisdom teeth had erupted at some point in the fall - and had all gotten infected in the back where they couldn't be seen. (If you are wondering who I pissed off in a past life, join the queue! When they told me it was a 3rd set of wisdom teeth... I started getting REALLY nervous in storms. My luck, I'm the perfect height for a lightening rod!)

Rather surreal to have a dentist looking at you in shock, trying to calmly inform you that had it gone the other way in a 50/50 split and the infection had just killed the nerves and not caused the pain.... the next thing would have been systemic and massive organ failure - that my body would have been too whomped to do much about. IE - dead. I've heard people say they would rather die than go to the dentist... but this was going to the extreme. (And why yes, my humor tends towards the sarcastic... )

So really... I feel like crap. I know I'm finally on the upswing, I know I'll finally start seeing some improvement and feel better at last here soonish, but. Crud. I don't know. I want a slice of REAL pizza. I want my mom's bread pudding. I want dinner to be EASY to plan tonight and not involve me staring at the stove and fridge for 2 hours. Intellectually, I know that gluten free is the only way. That there ARE good and tasty foods. That this is just one last little hump to crawl over (my mom's favorite phrase of "You've swallowed the elephant, don't go choking on the tail!" keeps running through my head), but, but... but.

How do you keep going when you don't see the benefit of gluten free eating? If you are still nauseous, still tired, still sick what keeps you on track?

Help?

. Oh my God. You were bitten by a brown recluse?? That's like the worst thing ever. I mean, maybe not, but I've seen shows about what happens when that happens and it appears extremely awful. If I leave my shoes in the basement I always hit them and make sure no spider is lurking in it. Many times I've been paranoid, and seen a spider that I think might be a brown recluse and will Google it later because I don't want it to be. Getting bit by one of those is like a nightmare come true. What part of the country are you in, since you said it's a growing problem? Remind me never to move there :ph34r:

I can see why you've got more learned helplessness going on than some of the rest of us, considering you have all these other nightmares on top of the gluten free diet. It's like, with all the other suffering you've gone through, having that extra daily-heartache of having to analyze every single little thing before you eat it is an extreme burden, I'm sure. But...hopefully now that the other bad things are cleared up, you'll have more strength to endure the gluten thing.

The way I get through it is...because I felt more like "life isn't worth it." BEFORE going on the diet. I had that thought beforehand, because the repeated and seemingly random debilitating gluten attacks I would have were making me very despondent. It seemed no matter what I tried, they just kept happening. And I was beginning to think "why do I even want to keep on living if I'm going to have to deal with this for the rest of my life." So when I start getting disheartened by the gluten free diet, I'm "lucky" in that I can remember back to how I felt before, and remember that it is so much better now that I have control over my symptoms. Heinously annoying as it is. And there is light at the end of the tunnel. It seems more and more people are becoming aware of gluten intolerance, where years ago it probably meant nothing. So, I'm hoping that being on the gluten free diet will increasingly get easier and easier as more food companies and restaurants gain awareness. It can only go up from here, eh?

And then I think. At least I can walk. At least gluten is my only intolerance. At least I'm not blind. At least I'm not paralyzed. At least I'm not horribly burned from a car accident. At least I have a roof over my head when it is 20 degrees outside. Etc. (Not that people with those ailments can't live a full life...I'm just saying...I try to be grateful for what I do have).

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    • marion wheaton
      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.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      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
      @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
      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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