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Gluten Free Girls

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Gluten Free Girls Apprentice

My 12 year old and 6 year old daughters have Celiac. We just had our 6 month visit with their GI and while my 12 year old's TTG counts went from 160 to 10, my 6 year old went from 160 to 127. They are on the same diet and I have made certain that my 6 year old does not ingest anything at school. She is so knowledgable and vigilant. We have not eaten at a restaurant in 6 months. We have gone through our entire kitchen and followed all the rules to a "T". We haven't licked an envelope or even worn lip gloss. The doctor seemed perplexed and ordered more blood work. I'm going crazy trying to figure this out. Does anyone have any advice or insights to offer? Her Gliadin Peptides went from 320 to 20 but the TTG is still up there. This Celiac rookie Mom needs help!


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How is she doing otherwise ?

Give it another few months and continue to be vigilant.

Do you have pets that eat regular food ? They can be a vector. We had to put all of them on gluten free food. I have a horse who reacts to bermuda/rye/barley/soy and a dog reactive to wheat, and cats eating cheap normal food going around drinking out of different water buckets could spread some serious havoc around here. My inside cat also licks people, besides having acted as the Ghost Glutener who drinks out of the dog water dish and started episodes of massive dog scratching and licking. My outside dogs routinely drink out of the horse's water tanks, too.

Have a look also at your soaps, shampoos and conditioners and hand lotions.

Some of us cross react to oats, even gluten free oats, even if we are not technically supposed to be doing so.

I'm reacting in a not definitely gluten but still upsetting way to me to some sort of home item, I have it narrowed down to a few guesses after having been trying to figure this out for two months now. I just trialed one of the suspects today at lunch and nothing yet, so this means that if it is item B or C, supposedly "gluten free," the manufacturer has changed something, as these are items in use for years.... to say I am not pleased is an understatement. And I am an adult with years of experience at this, not a child dependent to some extent on others in a public school (landmine :blink::ph34r: ) to not mess me up. Schools are really big on this hand sanitizer **** right now, but you need to get those little hands rinsed off. One of the things that was causing me a topical allergic reaction was that I changed brands of baby shampoo that I had put in a bathroom soap dispenser, going from a store generic that worked nicely, to a famous name brand that caused my hands to crack open and turn bright red. Reading the labels shows no obvious clue as to what ingredient could possibly be doing this, and this is my second big - time cosmetic reaction within a year, after the summer debacle with the new "natural, sensitive" deodorant which also had no clue on the label as to what the heck was really in it. At least the discovery that plain baking soda and some generic body talc imitation gold bond type, works MUCH better than anything else I tried for "sensitive skin" <_< has been interesting.

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    • lizzie42
      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! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      @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!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
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