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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995
Everything posted by squirmingitch
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Desperately Seeking help or advice
squirmingitch replied to Coley-Q's topic in Coping with Celiac Disease
You don't need a new toaster if you use toaster bags: https://www.google.com/search?client=safari&rls=en&q=toaster+bags&ie=UTF-8&oe=UTF-8 https://www.walmart.com/ip/Toast-It-Model-1814-Reusable-Toaster-BAGS-2-Pack-Perfect-for-Pop-Up-Toasters-Sandwich-Makers/25861614?wmlspartner=wlpa&selectedSellerId=2160&adid=22222222227... -
Waiting for endoscopy
squirmingitch replied to Tko2341's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Also, since this is a genetic disease, and can present at any time in life, all your first degree relatives should be serum tested about every 2 years in the absence of symptoms and immediately if symptoms present. That means your kids, parents, siblings. If any of them have been gluten free or gluten light, they will need to have been eating gluten every... -
Waiting for endoscopy
squirmingitch replied to Tko2341's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Um yeah, you're off the charts high there on both tests. The first test there, the IgA that says sufficient is just a control test to make sure you react to IgA. Sometimes when a patient is off the charts high, the doc will dx based on blood work alone. That plus the Vit D deficiency pretty much says it all. So welcome to the club you never wanted to... -
Help with diagnosis
squirmingitch replied to Jo hay's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Get a copy of your celiac panel blood work. You should always do this as a matter of course anyway. If you post the results of the blood panel here, along with the reference ranges, we can help interpret it & tell you if you were given the full panel. Lots of docs are misinformed & think you have to be off the charts high in order to be celiac which... -
Serology testing wait time
squirmingitch replied to Tutuology's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge. ...- 2 replies
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Aw, you're welcome hon. It sounds like you've had a time of it for a while. You don't need anyone coming along & upsetting the apple cart just now. I don't think I will ever truly understand why so many people are so against having to be gluten free. They act like it's a death sentence or something. Okay, so it's not fun & it does change your life...
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New to this and so so clueless!
squirmingitch replied to KTgoesGF's topic in Coping with Celiac Disease
Read this. It will help you keep yourself safe. Gives you lots of tips & info. Let's you know safe foods. -
Waiting for endoscopy
squirmingitch replied to Tko2341's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Do you have a copy of the labs for your blood test? It would help if you could post the #'s for the celiac panel along with their reference ranges. Did you ask the doc what prompted him/her to do a celiac panel on you? Did they mention anything about anemia or anything like that? May I ask how old you are? Generally, the gold standard is positive blood... -
So yes, your son is positive. I completely understand about life getting out of control (more often than not unfortunately). Yes, it's totally up to you if you wanted to go through with an endoscopy or not. As to your son, my only thought there is school, after that college & keeping him safe by being able to prove he has a valid dx. Now, you could...
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Here's the link for a low iodine diet. Leave off the gluten of course. http://www.thyca.org/pap-fol/lowiodinediet/
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First off, did the same doc dx you, your son & your niece? Was this a traditional doc? You need to get copies of your records, copies of the blood work he based his dx on. Always, always, always get your lab records & keep copies. Call, email or write or stop by his office & request copies of the records. When you get them , if you post them...
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Feeling like a burden to family/friends?
squirmingitch replied to SugarySpiceSassy's topic in Coping with Celiac Disease
That is fantastic Ennis! I am so happy for you & your mother to be truly reconnecting. Good too that she will get tested. -
Thanks Cyclinglady! Yes, we DO need a discussion on this. Great idea for it to have its own thread too. Moggy, Can you afford something like this? Do you have the space for it? https://www.walmart.com/ip/Cuisinart-Deluxe-Convection-Toaster-Oven-Broiler-TOB-135N-Stainless-Steel/55464716?wmlspartner=wlpa&selectedSellerId=8154&adid=2222222...
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I am glad to hear that Ennis
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Ennis, I truly don't want people thinking that coconut flour is going to gluten them! It is certified gluten free & I don't doubt that. I am positive that the vast majority of celiacs can eat that as well as they can eat anything else certified gluten free so I don't want to scare off your "average" celiac from using that flour. It's just that I reacted...
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Moggy, I get it. I am super sensitive. I also have dh. I have been gluten free for 6 years as of this past December. I can't say for absolute certain that I was always this sensitive or if I became this sensitive somewhere along the line. At any rate, I ended up being put on the Fasano diet. I was down to 86 lbs. http://www.todaysdietitian.com/newarchives...
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Need help desperately now!
squirmingitch replied to gluten-free girl 67's topic in Coping with Celiac Disease
Exactly. Thank you Karen. Moggy, someday you might want to look up my photos on the dh photo bank. Start with my post on 1/22/13 & continue through the next page. -
Need help desperately now!
squirmingitch replied to gluten-free girl 67's topic in Coping with Celiac Disease
My goodness, the whining! This is our disease. It is up to us to keep ourselves safe by being responsible for our own food whenever & wherever we go. I would never ask someone to get special food for me to have at their house. Taking that one step further by asking someone, even my sister, to ask the hostess if she will get foods specifically for me sounds... -
Need help desperately now!
squirmingitch replied to gluten-free girl 67's topic in Coping with Celiac Disease
I could not have said it half as well. -
The best way to find out for sure is as Ennis pointed out, a dh biopsy. Make a print out of that link Ennis gave & take it with you to a derm. Preferably a derm who has experience with the proper way to biopsy dh. Bring a friend or relative with you so they can help advocate for you. If the derm takes the biopsy on your back, you won't be able to see...
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Basically celiac, but not quite
squirmingitch replied to Jmun5's topic in Related Issues & Disorders
From what I am seeing, this is a test that costs $199 to $399 & you can go up to $599 for a package deal, by a company called Vibrant America which is somehow also connected to Vibrant Wellness. Seems like a Dr. () Joseph Debe pushes it. He is not a medical doctor at all; instead he is a nutritionist calling himself Dr. -
Antibodies still super high?
squirmingitch replied to SahiraHyena's topic in Coping with Celiac Disease
That is wonderful news SahiraHyena! Keep up the good work! -
Confused and scared :( Help
squirmingitch replied to kdixon's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
You have to be eating gluten every single day EVERY SINGLE DAY EVERY SINGLE DAY or you risk a false negative on the blood tests OR the endoscopy. You can't go off gluten & then "load up" a day or 2 before the tests! -
New diagnosis
squirmingitch replied to Ffergie's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Gosh I'm so sorry no one has replied to you guys. Ffergie, You need to keep eating gluten every single day until an endoscopy with biopsies is finished. Also weren't there other blood tests in the panel they did on you? You only mention the TTG IgA. If that's all they did, they may want to do more serum tests. The gold standard in diagnosis is positive bloods...