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Missing too much work

Nicoleilene

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Nicoleilene Newbie
Nicoleilene
Posted

I found out I had celiac disease in February. I was having problems and took 4 months off work on fmla. So December til March. I'm back to work as a cna on light duty and part time. I've been gluten free since January and I'm still having problems with feeling shaky and light headed. There's times I can't even drive because I feel too out of it. I've had to call in a lot already because I either can't drive or I'm afraid to pass out at work. I'm so afraid of getting fired and I need money to pay my bills. Does anybody else have this problem? I've been to 3 different doctors about this and all they tell me is to sit down if I feel light headed. 

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ironictruth Proficient
ironictruth
Posted

EAT PROTEIN!  My globulin dipped a bit and my protein was at the lowest end of normal during my gluten challenge. Nothing shocking lab wise, but boy did I feel it. I literally had times when I felt I would pass out and ended up in the ER. I was also afraid to drive with my son. I also realized this was connected to hunger even though I felt I should not be hungry. I swear, three weeks ago I almost had a metabolic crisis for lunch and dinner when I spent the day with my boyfriend. He was literally racing to find a place to eat when we were out.

I started just loading salads up with chicken breast, salami, eggs, ham, for 3 weeks straight.  Eating protein bars, (my personal favs are bounce energy balls and "the gluten free bar" and eat often (warning, high protein can constipate you a bit so keep fiber in your diet). Take a b multi-vitamin but do not go overboard on it.

My protein is now mid range and the globulin is back to normal. My alkaline phosphate is a bit low. I no longer feel like I am going to pass out though and was able to tone down my diet.

Has all of your blood work been checked?

Nicoleilene Newbie
Nicoleilene
Posted
  • Author

Yeah the only thing low was vitamin d. So I take multi vitamins. Maybe that is it. Work switched me to second shift so all I eat before work is bananas because I'm paranoid about getting a stomach ache if I eat anything else.

ironictruth Proficient
ironictruth
Posted

Plain chicken breast with that banana. Try it for a week. 

flutegal64 Newbie
flutegal64
Posted

It sounds like something else could be going on.  I would have hoped the doctor would run a blood test for other vitamin deficiencies?  A lot of people with Celiac are deficient in other vitamins. A lot of regular food is fortified with vitamins and most gluten free foods are not fortified with vitamins.  Also, your intestines are still healing probably so they may not be absorbing what they need to quite yet.

It could be other things besides Celiac.  Dizziness could be anything from throid, blood pressure, anemia, diabetes, etc... I'm not a doctor but it could be a lot of things. Go to another doctor until someone listens.  A lot of doctors figure if they wait long enough another symptom will appear to help them diagnose or they figure it will go away.  Medicine isn't clear cut a lot of the time.  If symptoms are vague it's tough for doctors to figure out.

I always keep a granola bar or a piece of fruit with me at all times... you can't always find gluten free food in a hurry.  And I know unexpected things happen so it's always good to have food on hand.  Protein is a good idea like someone said above.  Also sugar is a good thing for many people.  Charting how many calories you consume might be helpful too- with a change in diet you may not be getting the calories you used to.  But, really without medical advice it's tough to pinpoint what is making you dizzy.

SLLRunner Enthusiast
SLLRunner
Posted
2 hours ago, flutegal64 said:

It sounds like something else could be going on.  I would have hoped the doctor would run a blood test for other vitamin deficiencies?  A lot of people with Celiac are deficient in other vitamins. A lot of regular food is fortified with vitamins and most gluten free foods are not fortified with vitamins.  Also, your intestines are still healing probably so they may not be absorbing what they need to quite yet.

It could be other things besides Celiac.  Dizziness could be anything from throid, blood pressure, anemia, diabetes, etc... I'm not a doctor but it could be a lot of things. Go to another doctor until someone listens.  A lot of doctors figure if they wait long enough another symptom will appear to help them diagnose or they figure it will go away.  Medicine isn't clear cut a lot of the time.  If symptoms are vague it's tough for doctors to figure out.

I always keep a granola bar or a piece of fruit with me at all times... you can't always find gluten free food in a hurry.  And I know unexpected things happen so it's always good to have food on hand.  Protein is a good idea like someone said above.  Also sugar is a good thing for many people.  Charting how many calories you consume might be helpful too- with a change in diet you may not be getting the calories you used to.  But, really without medical advice it's tough to pinpoint what is making you dizzy.

So well said. :)

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    • 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?

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    • BlessedinBoston
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    • 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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