KMMO320
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Latest Celiac Disease News & Research:
Everything posted by KMMO320
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I am Non Celiac Gluten Intolerant and I dont react like a Celiac does with a minute amount of gluten, but a few small bites will start to make me sick, if I finish a gluteny meal, I will be ruined for the whole day. I am thankful I am not celiac, my heart goes out to everyone who has it. But in a small part of my brain I think...but what if this intolerance...
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It was nice.to have a dr who believed.in intolerance!
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ARCHIVED Misdiagnosed?
KMMO320 replied to MysteryDiagnosis2012's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
You sound so much like me. I dealt with my stomach/digestive issues for 18 years. It just became normal for me to know where the bathrooms are everywhere I go. It became normal for me NOT to eat at friends and family's houses because I knew I would end up in their bathroom with people waiting to use it, and having to go in after me (embarassing!). It just... -
They were great, I.went there yesterday and I was very impressed. I waited 5 mins and was brought in and they gave me all the time I.needed to explain everyrhing.that was wrong. They believe in intolerance unlike my.other GI so believed.that could be my.problem. I was happy because my other gi merely handed me some vitamins and said good luck, its not celiac...
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Haha I was stupid, wasnt thinking..I live an hour south of Boston...I should.have parked at the T station in Braintree and.gone by train, and after the appointment I could have mwt up with my sister who works at the Museum of Science and driven home with her when she got out, and at.least enjoyed a little free museum time until then. Silly me.
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Thanks! I think thats what I was looking for. It was very expensive day just to hear what I already knew though. Lol
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Well, I kept my appointment with the Celiac Center in Boston. They are doubtful that I have celiac, which is good, but the dr suspects I have an intolerance/sensitivity to gluten and possibly a wheat allergy and suggested to start the gluten-free asap. This was after my original GI said there was absolutley no reason to go gluten-free and she did NOT reccomend...
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ARCHIVED All The Symptoms But Blood Tests Negative
KMMO320 replied to toriabd's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
very true. I had negative blood work, but I am IgA deficient and they only tested using tests that look for IgA and I had the Endo (at 1000 out of pocket from me) only to have the Dr take TWO samples for biopsy and basically tell me that ulcers were my problem..only, I didnt go to her for stomach problems, I went to her for the head issues I was having. ... -
ARCHIVED Nevermind
KMMO320 replied to KMMO320's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
No, I was seeing Dr. Sheth on July 16th. -
I was supposed to go there July 16th but I cancelled. They sent me a letter informing me that they charge insurance as an outpatient hospital visit and not as a Dr office visit. with my ins, I would also have to pay a deductible and co-insurance. I cant do it, so I cancelled. good luck, my sis in law goes there and loved them.
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Well I decided to cancel my appointment at the Celiac center in Boston. I got a letter in the mail today basically telling me that they bill their appointments as outpatient hospital visits, and not as a dr visit. I called my insurance and I would have to pay a very large deductible and co-insurance on top of my usual copay. So my husband said really...after...
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I know I have been posting a lot, and a lot of what I post, I can search for, and I have, but I do like having an actual recent discussion so I guess that's why I post. lol. Anyway, I am 35 now and I really feel like I have been slapped across the face hard with reality. All of the problems I have had for 17 years..and I never once linked them together...
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I am back on Gluten after over 3 weeks of gluten-free because I am going to a new Dr on the 16th. For the last few days I have been really sick. Just extremely irritable, snapping at everyone, having hot flashes, crazy fog head, dizziness, stomach cramps, migraine every day. Today for dinner, I had a steak and cheese sub and a slice of pizza and I...
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The only thing the restaurant I work at charges for is salad instead of sides. Like if something comes with potato and veg and they want salad instead..it costs extra. I always tell people you may as well also get the potato and veg or extra veg and the salad because you are basically paying almost the full price of the salad. We dont use iceburg or romaine...
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Good luck with Boston :-) I understand how it's hard to let go.. everyone would love to know what's what and be sure about it.
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ARCHIVED Little Wins That Other People Don't Get
KMMO320 replied to Adalaide's topic in Coping with Celiac Disease
I went gluten-free for 3 weeks and during that time I felt like a real, normal human being. When I went to the bathroom it was normal, and I wasnt sitting there in agonizing pain with gut wrenching cramps like I am used to. I would come out of the bathroom with tears in my eyes. It felt like the greatest accomplishment to have a normal movement. I... -
gotcha! My doc doesnt even think I am intolerant at all, even though I proved that I was feeling so good when gluten-free for 3+weeks. She thinks its something else. After going through blood work and an endoscopy (1000 bucks out of pocket), I am going to the Celiac Center in Boston. Almost not sure its worth it but I have a hard time letting things go.
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Nope. My doc thinks I might be gluten intolerant but can't prove it without the tests, and I decided not to do them yet. I'm answering you here because I don't want the discussion to change in the photo thread :-)
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I was.diagnosed hypo 13 years ago. My only.symptom thar I noticed.was a goiter. i had just had my daughter and in one month I had her, was hospitalized with a horrible UTI then had my gall bladdrr.removed and then developed a goiter. Since then, when my meds are off (like now) I get tired, foggy headed, gain weight and I am freezing all the time. Also, my...
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Dani! ihave that all over my fingers right now! They are pale at the moment but 2 days ago.they were red and blistery. are you diagnosed?
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Thanks. I havent seen it happen.before and it hasnt happenes since, so it could be unrelated. I am not gluten-free anymore because I have to be retested.with a new.dr at a Celiac center. I feel like total garbage.right.now but everything.keeps coming negative. I am probably intolerant but I feel like I.need the validation.
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Does everyone get flares? I posted before on a different subject but now that I have been doing more reading, I am just wondering if what I experienced a few months ago could all be related.. Around January, I developed this CRAZY rash, like I have never had before. I have had eczema throughout my life but this was NOT the same. It was all over my neck...
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ARCHIVED Doctor Said It Is Not Celiac, Likely Ibs
KMMO320 replied to BuckeyeGirl's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I dont have answers because im in the same boat. Chronic D, headaches, muscle aches, fatigue, sinus.infecions...and all tests negative and they tell.me its Ulcers and IBS. I am not content with that. My GI even insists that Im not even gluten intolerant...yet when I went gluten-free for 3.weeks, I felt good. -
ARCHIVED Iga, Test Reults And Junk
KMMO320 replied to KMMO320's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
There is something here that says IgA TTG.. Anti Human Tissue Transglutaminase IgA ELISA (TTG IgA) <0.1 U/ml (Norm <10.3 U/ml) If thats it and its negative I would be happy to cancel my appt and just eat gluten-free on my own and know that im not celiac , and am intolerant. I am tired of doctors, to be honest -
ARCHIVED Iga, Test Reults And Junk
KMMO320 replied to KMMO320's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
This is the labs from Prometheus: Reference Deamidated Gliadin Peptide Antibody IgG (DGP IgG) <0.4 EU/ml <4.9 EU/ml Deamidated Gliadin Peptide Antibody IgA (DGP IgA) <0.1 EU/ml <6.1EU/ml Anti-Human Tissue Transglutaminase IgA ELISA (TTG IgA) <0.1 U/ml <1...
