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- Jane07 replied to Jane07's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2any advice would be helpful
they gone down alot since my diagnosis . the ttg test was done in a hospital it still not in the normal range 2 yrs later. the last time went up by the one before a little. maybe it just takes more time really trying to be careful i need to look at everything i eat to make sure -
- lizzie42 posted a topic in Parents, Friends and Loved Ones of Celiacs0Second child with Celia
After my 3 year old daughter's diagnosis, we all got tested. My 5 year old son also came back positive with number 12x the upper limit. We will confirm with another tTG and the other 2 tests in the panel. He has zero symptoms that I have noticed. Maybe occasionally vomiting. He does have asthma. He's kind of an a**hole sometimes but also he's... -
- CJF posted a topic in Traveling with Celiac Disease0European travel with Celiac Disease
I'm heading to the UK for a vacation the end of this month on a tour with Road Scholar. I haven't been out of the US since my diagnosis so I'm a little concerned about exposure to gluten during my travels. Most of our meals are provided by the tour. Either the hotels we are staying at, or places we will visit. Road Scholar is aware of my dietary needs as... -
- RMJ replied to Jane07's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2any advice would be helpful
Were the two tests done by the same lab? Do the tests have the same normal ranges? Each test manufacturer uses their own system of units when reporting results. Have your results gone down at all since diagnosis? Are you sure you’re gluten free? Do you eat at restaurants? I would recommend that you take a really good look at your gluten free d... -
- Elizabeth hoope commented on Jefferson Adams's article in Gluten-Free Foods & Beverages1Is tomato paste gluten-free and safe for people with celiac disease?
I travelling to Spain Benidorm in July it’s worrying me with the food and ice cubes for drinks I will buy bottled water but it has taken me many years to get well with being gluten free I could never stay off the toilet so it’s a bit scared going abroad- celiac disease
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they gone down alot since my diagnosis . the ttg test was done in a hospital it still not in the normal range 2 yrs later. the last time went up by the one before a little. maybe it just takes more time really trying to be careful i need to look at everything i eat to make sure -
After my 3 year old daughter's diagnosis, we all got tested. My 5 year old son also came back positive with number 12x the upper limit. We will confirm with another tTG and the other 2 tests in the panel. He has zero symptoms that I have noticed. Maybe occasionally vomiting. He does have asthma. He's kind of an a**hole sometimes but also he's 5. He has SO much energy. Like miles and miles of biking, running, gymnastics. Never stops. Eats great, normal growth. It was comparing my daughter to him that made me push to figure out what was wrong with her! Is it possible for a tTG test to just be totally wrong?
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I'm heading to the UK for a vacation the end of this month on a tour with Road Scholar. I haven't been out of the US since my diagnosis so I'm a little concerned about exposure to gluten during my travels. Most of our meals are provided by the tour. Either the hotels we are staying at, or places we will visit. Road Scholar is aware of my dietary needs as well. Any helpful hints about navigating the restaurants in England is greatly appreciated. Also are there any medications out there to help mitigate the effects of exposure to gluten? Thanks in advance.
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Were the two tests done by the same lab? Do the tests have the same normal ranges? Each test manufacturer uses their own system of units when reporting results. Have your results gone down at all since diagnosis? Are you sure you’re gluten free? Do you eat at restaurants? I would recommend that you take a really good look at your gluten free diet. It took six years for me to get all my results down to the normal range (I was originally positive for TTG IgA, TTG IgG, DGP IgA, DGP IgG and EMA). I started just avoiding wheat, rye and barley. My results came down but one was still high. Then I made sure any processed foods were labeled gluten free. My results came down more but one was stubbornly positive. Then I would only eat processed foods if certified gluten free or from a manufacturer with an excellent reputation among those with celiac disease. All my results were finally normal. My results went back up a little when I started doing a lot of baking with a reputable but not certified gluten free flour. When I switched to certified gluten free flour my results went back down to normal.
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By Aretaeus Cappadocia · Posted
As a more generalized response to your question, I've been contacting Costco customer service for several Kirkland products because they are either unlabeled or contain the generic warning label about being packaged in a facility that handles all major food allergens. Each time I ask, my question is assigned to a specific person who researches it and emails me an actionable response that says, more or less, "no risk", "possible risk", or "definite risk". All of the answers have the caveat in the example below. Also, they recommend that you buy the product, submit the question ***with the lot # of your purchase*,** and then return it if you don't like the risk profile. This is because some products are made at different facilities with different risk profiles. Here is an example of a recent email response: "This is [name] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response: This item is gluten free. This information reflects the sender's knowledge on the date the information is being provided. Ingredients and processes are subject to change without notice. I hope this satisfies your inquiry about [product name and stock #]. If you have a follow up question for me about this item please don’t hesitate to ask. I am happy to help! If I do not hear back from you within 48 hours I will consider this case closed. " Like pretty much every food source, you have to decide who you trust and then live with that. I tend to trust these responses because a person investigates it, their answers are detailed (not generic), and also because sometimes they say "nah, don't eat it". Hope this helps.
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