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Trouble With Healing - Could It Be Celiacs?

Energy Seeker

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Energy Seeker Newbie
Energy Seeker
Posted

I have been struggling with my energy levels since I was 17. I've been on iron pills on and off since (I don't care for the constipation and try to get iron from broccoli and other veggies). I have always been very active and am currently playing at a high level of ultimate frisbee and thought the low energy levels was a result of my active lifestyle.

In my fourth year of university I was told I have acid-reflux disease. I've taken nexium twice, (2 month stints) it stopped the esophagus scarring heartburn but still have some serious upset stomachs. I have stopped eating spicy/starchy/sugary foods to control my heartburn.

After a meal I would get so fatigued I could fall asleep sitting in my chair before dessert was even served. At first I thought it was the potatoes because they are so high in starch, so I stopped eating them.

Last summer A friend of mine was diagnosed with celiacs and explained her symptoms so I went and got tested but the blood test came back negative. Regardless of the negative results I decided to cut bread out of my diet completely because of the "explosions in my intenstines" after I ate it.

My parents are irish and dutch, my mom (irish) also has trouble eating wheat.

In august I sprained my ankle and the swelling never subsided. My phsio can't explain the inflammation and constant irritation I'm experiencing because normally in a sprain that would have subsided by now. I am worried that if I have celiacs eating gluten is affecting the healing process for my ankle, is this possible?

I have been on a gluten-free diet for 1 week now and have dropped one dress size, at a time where my physical activity is at an all-time low due to my ankle injury.

Since I've already have a negative blood test I don't want to adapt a gluten-free lifestyle unless I know for sure I have celiacs. I also suspect I have other GI problems which would be easier identified if I knew whether or not I had celiacs.

Any advice?

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gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

Entero Labs might be a lower cost option for getting a celiac test without the scope.

I've tested blood negatve, biopsy positve to Celiacs. Always had shockingly low iron and gastro problems of all sorts. Some celiacs never get an official diagnosis-the blood work is questionable and the biopsy never showed enough damage to call it celiacs. You may be in that group. Stick to the gluten-free diet and see how you feel. After a few months, maybe earlier, you shoudl have a noticable reaction to gluten if you are a celiac.

Good luck

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Son's legs shaking

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      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
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