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Your Celiac History :)


eborzecki

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eborzecki Explorer

I am curious, about others...What symptoms did you have? What came from you blood results (numbers, tests, positive/negative)...Did you have a biopsy? (why/why not?)...How old were you when you were diagnosed? How did you find a knowledgeable doctor?

Thanks I am just learning about this disease and am curious, about others testing, their iga and ttg levels and how long it took to get them down, what did you doctor say about it, and did you opt for a biopsy or not


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atan91 Newbie

I was sick with debilitating stomach aches, fatigue, severe bloating, constant weight gain and fluctuations, amongst other things, for years. I was also sick with pretty much every cold that happened to be going around (or even not going around) at the time. At the end of July this year, I became incredibly sick. I had a severe stomach ache and nausea that lasted for days, my poops were oily and practically disintegrated when I flushed. I could barely move. I decided to cut out gluten and felt better after a few days- better than I had felt in 3+ years!

I continued with the gluten free diet for the summer. My tests came back negative because I had been off gluten for a while, though my doctor knew this and agreed that the tests are not always accurate. Mid-October I decided to start re-introducing gluten through cross-contamination, so I bought quaker oats and had them daily for breakfast. It didn't take long for the symptoms to show up. Lethargy, confusion, bloating, stomach aches, nausea, and mucus in my poop. I decided to attempt a real gluten challenge on October 31 and had to stop on November 1 because I felt like I was dying. I couldn't talk, could barely walk, horrible stomach aches, pooping mucus, constipation, numbness in limbs, lost function in right arm for a day, nerve problems, joint inflammation, bone pain, all-over muscle aches, nausea, serious weakness. I am still suffering the effects, and on top of it all, I caught my coworker's cold. Yuck.

I was diagnosed officially on November 7 based on my symptoms alone, though I knew for some time before this that I had this disease.

Edit- started when I was 16/17, I'm 20 now

samie Contributor

My symptons were iron defiency for at least about 10 yrs also diarriha, other vitamin defiency problems, also could not stop throwing up after having my last child. I dont know about blood work. I was sent to the hospital because my iron was so low the docter thought i might pass out. They decided to have a gastorligist meet me in the hospital cause i have gotten tested for all types of cancer through my hemotoligist all negitive. Got scope done while been there 2 weeks. After the scope they went ahead put me gluten free. I was 26 almost a year ago.

AVR1962 Collaborator

For me one of my first symptoms that something was not right was my vision which was blurred and sometimes double. I was also getting progressively more tired, then stomach issues (not real bad but I know something was bothering me). I did a liver cleanse to try and boost my metabolism and that's when it revieled itself. I had gone off gluten before I was tested and when I went back on for my tests I got too sick so typical tests were not performed on me. However, with all the other bloodwork and all the other testing I did docs were able to put it together. I was 48. I found a very good endocrinologist who determined what I was dealing with was not what my doc thought it was originally, he was recommended to me and tests done there (bone loss) were a turning point in my situation. My current doc seems to understand celiac and just happen to get him because of old doc left.

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      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
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