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Need some advice.

Christory77

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Christory77 Rookie
Christory77
Posted

So this is all new to me. Had an endoscopy done. Showed inflammation, some biopsies were taken etc. researching going gluten free and I'm completely baffled. What I've read says even a trace of gluten can be "poisonous"( sorry for the dramatics) to a person with celiac, yet gluten free doesn't mean 0 gluten. How is that supposed to provide any peace?  Someone said to get rid of even appliances that had gluten in them due to contamination. How is it that crumbs in a toaster are worse than gluten in supposedly gluten free food? The diet itself doesn't scare me. I've actually found comfort in all the gluten free options. Baking mixes, doughs, pasta, pizza crusts, etc. I was very pleased that I could maintain eating what I like with relatively minor adjustments. The concern being that even doing this, there's still a possibility of consuming gluten just makes me feel like I'm never going to get ahead with this. Any advice?

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Ennis-TX Grand Master
Ennis-TX
Posted
30 minutes ago, Christory77 said:

So this is all new to me. Had an endoscopy done. Showed inflammation, some biopsies were taken etc. researching going gluten free and I'm completely baffled. What I've read says even a trace of gluten can be "poisonous"( sorry for the dramatics) to a person with celiac, yet gluten free doesn't mean 0 gluten. How is that supposed to provide any peace?  Someone said to get rid of even appliances that had gluten in them due to contamination. How is it that crumbs in a toaster are worse than gluten in supposedly gluten free food? The diet itself doesn't scare me. I've actually found comfort in all the gluten free options. Baking mixes, doughs, pasta, pizza crusts, etc. I was very pleased that I could maintain eating what I like with relatively minor adjustments. The concern being that even doing this, there's still a possibility of consuming gluten just makes me feel like I'm never going to get ahead with this. Any advice?

Everything with the gluten-free certification must be below 20ppm in a lab test. THAT is much much less then a crumb. Toasters are cheap just get a new ones. If you eat whole foods only your chances are much much less of getting CCed. We normally suggest no gluten-free processed foods (dough, mixes, chips, crackers. breads etc) for the first few months only eating whole foods to boost your healing also remove dairy and oats as they can be hard to process with the initial damage (Diary requires the enzyme lactase which is produced by the tips of the villi in the intestines which are the most damaged).   To make it much easier clean our your microwave really goods, put down some paper towels in the bottom when you use it and get some nordicware microwave cook ware, a new mixing bowl. measure cup, spatula, and some basic eating and cooking utensils and you can start fixing stuff that way starting off without worry. I love steamed veggies, omelettes, etc done this way so tender and easy to digest.  I might also suggest using freezer/butcher paper for a clean prep surface starting off also makes clean up a breeze since you just trash it when done.  You can get the rest of you appliances, pots, pans and everything else changed over later. And this makes it simple to get started....PS crockpot liners are a life saver and making huge pots of stew, or roast in them from raw ingredients is super simple and you can eat on it for days.

RMJ Mentor
RMJ
Posted

Many celiacs can eat 10- 20 mg of gluten per day (10-20 ppm in one kilogram of food) without adverse effects.  That is roughly equivalent to 1/16-1/8 teaspoon flour.  More than a trace, but still a small amount.  Some of us cannot handle that amount.

Christory77 Rookie
Christory77
Posted
  • Author

Thanks. Still figuring it all out. 

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

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    • knitty kitty
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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
      Son's legs shaking

      By lizzie42 · Posted

      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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