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Recovery Is So Up And Down. Anyone Else Struggle With This?

MissBonnie

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MissBonnie Apprentice
MissBonnie
Posted

i was hospitalized 4 months ago and this is how i found out im celiac. since then i have good days and bad. i just wonder when the bad days will go and i will have only good days. has anyone else been sick for this long? and if so what was the recovery like? im getting really depressed being tied to my bed constantly. any positive thoughts or encouragment would be much appreciated thanks. im 22 if that helps anyone

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viviendoparajesus Apprentice
viviendoparajesus
Posted

i have also had ups and downs since my diagnosis several months ago. i think part of the problem for me is they keep finding other intolerances and allergies, so i cannot figure out what to eat. it is made worse by not having clear reactions where i can connect symptoms to problem foods. i am still in the recovery and healing process so your question is one of mine too. fortunately, i have not been so sick to be tied to my bed, but in some ways at least then people might understand i am sick versus now i look fine but feel anything but fine. i am also in my twenties. at least we are younger when we got diagnosed i think that should help in our healing and we will have many years to enjoy this knowledge and make choices for health instead of unknowingly eating something that is harming us. best wishes!

rosetapper23 Explorer
rosetapper23
Posted

Unfortunately, the journey is different for all of us. It took 18 months on a VERY strict gluten-free diet for me to feel "better." However, cross-contamination occurred from time to time, which caused me to have to receive intravenous iron on a weekly basis (which I have since overcome), receive B12 shots (still getting), and suffer numerous setbacks (e.g., two fractured feet from deficiencies that caused problems with my tendons and ligaments, breast cancer, etc.). Everyone heals at a different rate, and there can definitely be ups and downs because of cross-contamination, so all you can do is try your best to adhere to the diet. Even so, it will take time to heal....

Kim69 Apprentice
Kim69
Posted

Hi miss Bonnie. You may recall that I am 14 months gluten-free and am still having abdominal pain, morning nausea and fatigue. I haven't stopped trying to find out what else is wrong with me, in addition to Coeliac. Last week I saw a new gastroenterologist and he suggested I may have IBS and fibromyalgia.

I suggest that you look for other food intolerances, visit other specialists and keep searching. I am sitting in a room having a breath test today-to see if I have SIBO and last week I had heaps of blood tests. My Dr said that not to place too much hope on a diagnosis since some autoimmune diseases don't show up on blood tests for years.

I am really sorry you feel so bad. Don't give up - keep hassling your Drs to keep an eye on your vit and mineral levels. In the meantime keep up your healthy gluten-free diet. Perhaps keep a food diary?

Thanks for your post. Please let us know how your recovery goes.

ladymiss Rookie
ladymiss
Posted

hi miss bonnie, i've been wondering about you since i read a previous post. i don't want to say anything that seems to disregard how tough the day to day can be. it sounds hard. please try to hang in there!

i do want to say, try to infuse your day with things that you love and enjoy and make you laugh. laughter is good medicine as they say.... give yourself some small things.....flowers, sketching, looking at beautiful art in books...or whatever it is you love. things that elevate the spirit. do something that is gratifying. doing something small but nice for someone else can help you be 'away' from your struggles for a small amount of time. maybe writing letters for Amnesty International or some other nonprofit/charity group who needs many, small actions. these could be done at your own pace while resting at home.

where i live, there are a lot of mountain bikers and i like one of their analogies for staying on the course and not wiping out, "look where you want to go". it's incredibly simple....but reminds one to pay attention and focused in order to not get distracted and stay in control (of what can be controlled). Maybe we can remain focused on those things that keep us in better spirits, in between the bouts of YUCK!

all the best to you! hang in there!

dilettantesteph Collaborator
dilettantesteph
Posted

It took me a long time too. I had to be on a very gluten free diet too. You might be a super sensitive celiac like I am. Keep a journal of what you eat and how you feel. That can help you figure out cross contamination problems and possible food allergies.

Are you using a kitchen shared with gluten eaters? Can you make your own kitchen with a dorm fridge and microwave? Can you cut out processed foods and stick to produce and meat?

I hope you feel better soon.

MissBonnie Apprentice
MissBonnie
Posted
  • Author

thank you for all the replys. its just hard when you're literally stuck in bed from nausea every sinngle day and if you get a day without it then you have unbearable pain or headaches from stretching your neck in bed. it sucks thats all there is to it. if i didnt have yoiu guys on here id be completely alone. i cant do this anymore. im fed up. :( having a bad day...

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  • Posts

    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      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.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @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
      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!
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