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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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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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