
squirmingitch
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Everything posted by squirmingitch
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ARCHIVED Jumped In Feet First!
squirmingitch replied to SLLRunner's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Good for you!!! I know this has been such a long painful journey for you SSLRunner but you've reached the end now & I hope you have no more doubts and can live with not having an official dx. After all, your body did give you an official dx, it just isn't signed by a doctor right? I am thrilled to hear you're feeling so much better! Yaaaaaaaaaaaaaaaaaaaaaayy... -
ARCHIVED Thoughts on symptoms and tests results for my 8 yo daughter
squirmingitch replied to bessebc's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I'm sorry but I have to agree with cyclinglady. I really don't think she's being too harsh. We see it all the time where docs say a patient should go off gluten & see how they do. The problem is the patient has to go back ON gluten for 12 weeks for the blood panel or for 2 full weeks for the endoscopy. MOST of the time the reactions after being gluten... -
Good advice from Fundog. NSAID's are also known to aggravate the rash. If you have to take something Tylenol is the least offensive. Ice packs help too.
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ARCHIVED extreme muscle wasting
squirmingitch replied to carle's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
I do carle. I had unbelievable pain. Muscles, tendons, bones, joints. Bone pain not just in joints. For instance, in the middle between the elbow & the wrist. I thought I would be in a wheelchair within a years time. No painkillers could touch it, they did zilch. Body parts would swell and the nerves were screamingly sensitive. At times I would just about... -
ARCHIVED extreme muscle wasting
squirmingitch replied to carle's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
It takes time to heal and regain weight. I didn't gain an ounce for a solid year & 1/2 at least. I am 5'2" & celiac had me down to 91 lbs. Sometime between year 2 & 3, I got back up to 95 lbs. & then stayed there forever. I got so discouraged that I quit weighing myself at all because the scale never changed. Then one day I weighed myself... -
ARCHIVED medication
squirmingitch replied to razzle5150's topic in Gluten-Free Foods, Products, Shopping & Medications
You're welcome. -
ARCHIVED DH Biopsy while on gluten-free diet?
squirmingitch replied to AIMama's topic in Dermatitis Herpetiformis
Hi AIMama, From all that I have read in medical texts, a dh biopsy will show negative if you have been eating gluten free. Open Original Shared Link Open Original Shared Link Open Original Shared Link Open Original Shared Link This is VERY IMPORTANT!!! Note WHERE the dh biopsy is done! Open Original Shared Link Open... -
ARCHIVED Gluten, potato, corn, and more oh my!
squirmingitch replied to Awol cast iron stomach's topic in Food Intolerance & Leaky Gut
Eat a cruller for me please. -
ARCHIVED Potential Celiac Diagnosis?
squirmingitch replied to jen4az's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Your daughter is absolutely positive - no question about it. No, people with high IgA do not get false positives. Very telling results on your daughter. EMA positive, TTG IgG positive, Gliadin Ab IgG positive - really high! Keep her on gluten until you get the endoscopy for her. Your hubs is also positive so on to an endoscopy. Keep him on gluten. -
ARCHIVED Hidden gluten
squirmingitch replied to Froggymom3's topic in Gluten-Free Foods, Products, Shopping & Medications
No one with celiac should be using "real flour" at any time. You inhale it & that's all she wrote. It also hangs in the air for hours. No one in your house should be working with wheat flour at any time. Not making gravy, cookies, cakes, pasta or anything else out of it.- 13 replies
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- taco sauce
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ARCHIVED Platelets
squirmingitch replied to andersonfdbn's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Were you eating gluten right up until the endoscopy? We'll all just have to wait for your lab & endoscopy results to know if you have celiac or not. Anemia & B-12 deficiency are certainly symptoms of celiac disease but that alone doesn't mean you have celiac. -
ARCHIVED Gluten, potato, corn, and more oh my!
squirmingitch replied to Awol cast iron stomach's topic in Food Intolerance & Leaky Gut
I believe AWOL is talking about doing a gluten challenge for small intestine biopsies to dx celiac disease NOT a colonoscopy. Totally different things. AWOL, I haven't done a challenge so can not help you from personal experience. I do admire what you're about to embark upon and think it's the smart thing to do. I wish you the best in your gluten filled... -
ARCHIVED Freezing rice flour
squirmingitch replied to Marciep's topic in Introduce Yourself / Share Stuff
Marciep, go to the thread where you read that & read the last post. I made it & included links for VALID info. about how to store all kinds of different flours. Here's a link to the thread: -
ARCHIVED Reactions to rice flour?
squirmingitch replied to Irene Joanne's topic in Food Intolerance & Leaky Gut
Can you provide links for where you found this info. saying you shouldn't use any flour that has been frozen? I found these links about storing flours of all kinds. Open Original Shared Link Open Original Shared Link Open Original Shared Link -
ARCHIVED loose diagnosis, pls check out my labs
squirmingitch replied to mirror~pool's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
Is your doctor willing to give you an official dx of celiac based on your labs without getting an endoscopy? If so, then by all means, forget the biopsies. I agree that you are celiac. Geez, any idiot could see that with your blood panel results. -
ARCHIVED Positive deamidated gliadin, iga and negative ttg, iga
squirmingitch replied to shellyb11482's topic in Dermatitis Herpetiformis
That is just until the antibodies are purged from the system --- the antibodies that are lurking UNDER the skin. From the research I have read, that can be anywhere from months to 2years to 10 years. Some texts say it can flare for life but I noticed those were generally old, (outdated) texts. I have to believe that was due to people not really knowing how... -
ARCHIVED So frustrated with my doctor! Where do I go from here?!?
squirmingitch replied to kkay's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Does your insurance REQUIRE you to have a referral in order to see a specialist? Some insurances do not, some do. If yours does not, then call the GI back & inform them your insurance does not require a referral. I've had that line before b/c the office staff just assumes your insurance requires a referral. My insurance does not & when I inform them... -
ARCHIVED So frustrated with my doctor! Where do I go from here?!?
squirmingitch replied to kkay's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
You need to LOOK at the lab order YOURSELF right there in the office before you leave the doctor. LOOK at it as he's writing it!!!! BEFORE he leaves the room. Yes, darn well, you question him & make him SHOW you the order. You have the right! You need to follow that procedure all the way down the line including when you're at the lab for the blood draw... -
ARCHIVED Positive deamidated gliadin, iga and negative ttg, iga
squirmingitch replied to shellyb11482's topic in Dermatitis Herpetiformis
The blood was positive. Period. The rash can present OR NOT whether you're eating gluten OR NOT whenever it darn well feels like it so you eating gluten & not immediately breaking out does NOT mean it isn't the rash. IMO 99.9% chance any dh biopsy is going to be a false negative. Ask for that blood test I told you about -- there may be a chance... -
ARCHIVED Do Wild Oats contain Gluten?
squirmingitch replied to Nomi2's topic in Gluten-Free Foods, Products, Shopping & Medications
Nomi2, Here is a link to some fantastic information about oats, celiac and gluten free. I think it's something you will want to learn about. Open Original Shared Link Follow the links provided there. -
ARCHIVED Glutened by ocean spray cran raspberry.
squirmingitch replied to Kurasz's topic in Gluten-Free Foods, Products, Shopping & Medications
Kuraz, it's just possible that you have developed a food intolerance to cranberries. Sometimes we get "other food intolerances" & I understand from others that the symptoms can be just like getting glutened. I'm not saying the chemicals aren't what's getting you but it could just be the berries themselves. The only way you could test that would be to... -
ARCHIVED reactions to coffee or coffee based drinks??
squirmingitch replied to Megan16's topic in Coping with Celiac Disease
Both the statement about the wheat flour on the coffee beans and the wine corks being dusted with wheat are ridiculous, absurd & completely false. More likely this all came from the endless internet myths of where gluten lurks. Firstly, wheat is one of the top 8 allergens & would, by law, be required to be listed in the ingredients list. I... -
ARCHIVED Biopsy done - do my results show celiac?
squirmingitch replied to kkay's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Here's the FULL panel. Make sure he orders the whole shebang. Anti-Gliadin (AGA) IgA Anti-Gliadin (AGA) IgG Anti-Endomysial (EMA) IgA Anti-Tissue Transglutaminase (tTG) IgA Deamidated Gliadin Peptide (DGP) IgA and IgG Total Serum IgA Also can be termed this way: Endomysial Antibody IgA Tissue Transglutaminase IgA GLIADIN... -
ARCHIVED Positive deamidated gliadin, iga and negative ttg, iga
squirmingitch replied to shellyb11482's topic in Dermatitis Herpetiformis
You're more than welcome! Make sure to take copies of those print outs to be passed out at grand rounds. -
ARCHIVED Positive deamidated gliadin, iga and negative ttg, iga
squirmingitch replied to shellyb11482's topic in Dermatitis Herpetiformis
There is also this from: Open Original Shared Link Under this section: Diagnosing DH With Skin Biopsy and Blood Tests The skin sample must be taken from skin directly adjacent to the suspected dermatitis herpetiformis lesion, as opposed to directly from the lesion, since inflammation in the lesion can destroy the IgA deposits. Read more at Open...