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cassP

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cassP last won the day on July 29 2014

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    Female
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    health, gluten-free, movies, dance, and love :)
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    Miami

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About Me

Hi. I've been lurking for awhile & finally decided to join. Looking back, I've had all kinds of symptoms as early as age 8. I started getting tested for Lupus at age 14- because of the classic "butterfly" rash on my face (which actually disappeared at age 27 when I went wheat free & gluten lite on the Bloodtype Diet for Type O).

Anyways, after 2 years of blood tests- a Lupus Diagnosis could not be made- and a Sjorgens test was negative. I never even made a connection till this year- that my elevated speckled ANA could be related to Celiac.

So, as I mentioned above- I found Dr. D'Adamo's Bloodtype Diet in 1999. I was truly, predominantly, wanting a diet to lose weight. I had no idea- that eating mostly meat & veggies, and removing wheat from my diet- would not only slim me down, but progressively cure every annoying physical ailment i had.

I only thought to ask my doc for a Celiac panel after my best friend mentioned it- after being Gluten Lite for almost a decade (with month long binges here and there)- it's no surprise I had 2 inconclusive blood tests... (TTG weak positive, Antigliadin IGA & IGG negative, Endomysial Antibody Positive, IGa serum LOW). I never had the small intestine biopsy because my Health Insurance denied me.

That was 2 years ago, and I just couldn't shake the non-diagnosis... as I looked in the mirror and realized the little holes in my teeth are possibly ANOTHER classic symptom- I decided to order the Gene test through Enterolab. I was expecting to only get one gluten sensitive gene & still be guessing- but I got 2 DQ8s.

Well, that was more than enough motivation to adhere 100%. After YEARS of GI pain combined with my own research, blood & gene tests- I suspect I am a Celiac with some Fructose Malabsorption. Now, I just want my G.I. to formally diagnose me- so that my parents and siblings will get properly checked.

Sorry so long- it's nice to be here- and I'm looking forward to sharing information and support with everyone :)

  1. icon MH0730 reacted to a post in a topic: Descriptions of DH "Types"
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  3. cassP
    my advice is: you have a dq2 & a dq8, you have SO MANY of the Gluten intolerant & Celiac symptoms, you've been on 2months now of heavy gluten eating.... ! Get a full Celiac panel NOW, and then GO OFF Gluten forever.. having 2 Celiac specific genes, PLUS having all the symptoms, and already having Anklosing Spondolitis.. i would assume if i was u,...
  4. ButterflyChaser started following cassP
  5. cassP
    what are u eating? is there a type of diet you're trying?? do u have any thyroid issues?? i have been on every diet in the world, and ive been dancing & dieting my whole life, even had a bout with anorexia.. i can say with all my experience- yes, exercise is great for your immune system, mental state, & quality of sleep- & great for your...
  6. cassP
    YES- i ALSO recommend SILVER.. i totally forgot i put it on my rash too... calmed it down a little bit while i healed and detoxified of gluten
  7. cassP
    hey that's so interesting that your doc was concerned about Parathyroid with low D, ihad never heard of that before. what about a full thyroid check up? have u had that??? so many of us have both Celiac & thyroid disease, and many that are Gluten intolerant or gluten sensitive also have thyroid disease. Thyroid disease ALSO screws up your digestion...
  8. cassP
    sorry, i hate to give bad info... it was only what i had read before while researching :/ but in original posters post of what doc wrote- the EMA DOES reach up to 100%, more than the others if im not mistaken
  9. cassP
    i did genetic testing thru enterolab .. it was about 150$ im happy i spent the money!
  10. cassP
    i never had the endoscopy- and wouldnt know how to read it- BUT maybe others on here could for you most doctors and medical journals in the US are just behind on this disease- they think it's only from DQ2 and DQ8-> but overseas they are diagnosing Celiacs with different DQ#s. believe me, it wont be the first or last time your doctors dont know anything...
  11. cassP
    the Endomysial antibodies were not tested on you. it's 100% specific to Celiac. im also curious which vitamin levels were tested on you and what was low! there are certain ones and more that are so common in those with Celiac, Gluten intolerance, Thyroid Disease, or anyone with digestive issues and some autoimmune disease. ie: D3, iron & ferritin,...
  12. cassP
    did u have ALL the antibodies tested???? this is such a hard disease to diagnose- you really need ALL antibodies tested- not just the ttg for example. PLUS if you are LOW in IGA serum, then your iga antibodies will be innacurately low. please consider going GLUTEN FREE even if you don't get a 100% dx.... i felt like i needed the dx as well, but now i know...
  13. cassP
    found this on a google search... gotta go to bed.. anyone still there??? ive been having a lot of bladder issues past year since my last UTI... off and on feeling like i have another UTI and often it happens after i eat yogurt or bananas... which is extemely weird!! didnt happen before... i DID notice in the past 4 years as i went gluten free- the bladder...
  14. cassP
    it's a very basic start to looking at your health- but with the celiac portion being only the TTG, and the thyroid portion only being the TSH... you're very likely to be UNdiagnosed when there could actually be something to diagnose... my Endomysial Antibody (part of a Celiac panel) was my only solid positive... and my TSH didnt go above 5 untill i was 3...
  15. cassP
    mine took 4 months of being gluten free to disappear.. but i also only had a small patch on my stomach and random bumps on my forearms
  16. cassP
    i searched and found this thread- because i had this paralysis THIS MORNING!!!!! i believe it could be gluten related-> as SOME Celiacs get Narcolepsy & Apnea-> so i ASSUME that Sleep Paralysis and other sleep disorders could be caused by gluten. im a little nervous tho- because i only had these episodes about 5 times maybe- on and off from Mid...
  17. cassP
    oh i am SO SO SO happy i found this thread!!! im going to Cape Cod in August for the first time ever, and i really need to know my gluten free options!!! especially since most of our eating will be out :/ we're staying at my bf's grandmothers- and he says her fridge is always STUFFED im worried, i need SOME room, and i really need daily veggies for regularity...
  18. cassP
    not a silly question.. i was wondering the same thing.. i havent flown in almost 2 years.. and im going to be flying in August... now that ive been dx w/thyroid crap- and i now have my Armour & Cytomel ... im starting to think i need to buy 1 supplement that has all the rest in one capsule.. cause i take A LOT of stuff... and i cant just carry my L-Glutamine...
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