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The Long Awaited Appointment Is Near
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After about a 2 month wait, my appointment with the highly recommended celiac specialist is on Friday (10/8). Yeah!! I met him during a local GIG meeting and spoke with him for a few. He's a GI spec and is head of nutrition at one of our leading hospitals. He'll be running the HLA tests (gene typing) and will probably repeat the endoscopy (since I got it 2 years ago and only 3 samples were taken). I've been in gluten limbo for all this time, so it will be nice to get all these tests done and possibly get some answers. I've been reading much and feel well-prepared by the forum community.. so my thanks.

PS... anyone in doubt of whether they should change their current doctor should request a copy of their medical records. :lol: My previous doctor totally lied about continuing tests and made it out like I didn't want to do them... he's the one that suggested I not.

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Good Luck and I hope all goes well. Please let us know how it goes on friday.

Lisa :)

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I must say that I'm very pleased with my visit to the doctor... he was extremely thorough. I spent over an hour in his office speaking with him about everything I knew and why I was there... I didn't leave out a thing! I even mentioned my recent vertigo spells (which haven't occured in a while). They drew about 4 vials of blood and he is re-running the thyroid (because I'm very cold intolerant), a complete metabolic panel w/ sed rate, will check for b12 & some other common deficiency which I can't remember, he'll also re-check my liver (because my ind. bilirubin is always high), re-run some celiac tests, check for intestinal inflamation and here's my favorite and the most anticipated... the HLA (gene typing)!! It will be a couple of weeks before these results come back. In the meantime, he gave me his card with his e-mail address and told me if I had any questions or concerns that he'd be sure to get back with me asap.

My anti-gliadin antibodies are positive, but low-positive... he's wanting to make sure that celiac is not down the road for me.

I like this doctor and the downtown trip was certainly a pain in the butt... but so worth it.

Gretchen

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I received a call from my doctor today (less than a week from the test date!!). Anyway, it's good news! He performed the HLA (gene typing) and I'm negative for both DQ2 & DQ8. Apparently I will never develop full blown celiac.

After the wedding sometime (which is 11/6), he might want to perform the ELISA testing to see if that's where the cause of my symptoms are coming from.

Gretchen

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    • Celiac - How many symptoms can there be?
      Hi Everyone I am new here and wanted to see if anyone else is experiencing the same thing I am.  I was diagnosed positive for celiac in 2/2016 via biopsy from an endoscopy.  I was negative for blood work because I self-eliminated gluten 9 months prior; so I guess I had not antibodies register in my lab work.  Prior to 2/2016 I was having symptoms for almost an entire year.  Despite cutting out grains in general for 9 months, I would have a gluten attack at least once a month.  I have had a history of sinus, bronchial infection.  I remember as young as 17 getting sick but I always bounced back and was active in sports and working out.  But in the past year I developed the following symptoms - Sudden desire to pass out, nausea, headaches, heart palpitation, crashing exhaustion as if I was recuperating from the flu, wheezing in my chest. I was bounced around to an allergist at this and was told I was asthmatic and I had food sensitivities to dairy, nuts, corn or corn derivatives (including corn syrup) and grains.  so I cut everything out!  Despite cutting everything out I was still have episodes at least monthly, possibly cross contamination.  In April 2015 I traveled to the Carribean for 2 weeks,  I became very ill with a urinary tract infection, stomach bug and severe back pain with constant fever.  I was treated with antibiotics (Bactrim) for 10 days which did clear up the situation. I came home and dismissed everything to a coincidence.  Six weeks later the GI distress woke me up in the middle of night.  The pain was so excruciating that when I sat on the toilet thinking I had to go, I almost past out from the pain.  I lay myself down on the floor until it subsided.  The next day I contacted my primary and was immediately seen.  She referred me to a GI specialist but the appointment was not until August.  Then 2 weeks before my GI appointment they called and rescheduled for late September.  I saw him and by then I was feeling better; no epsides for almost 2 months.  So we did nothing.... boy did I talk to soon.  Immediately after the appointment I had an attack.  These were the symptoms: Nausea, crashing fatigue (as if I was hit with the flu), diarrhea, dizziness,, loss of appetite,  lower back pain, specifically in the middle; intestinal discomfort and body aches which lasted 10 days!! and abruptly disappeared, thank God.
      . I had to wait to see the GI until 1/2016.  Once I saw him he did labs which were all normal.  He checked my liver, kidney, pancreas, blood count which was all normal.  He also scheduled the endo/colonoscopy for end of 1/2016.  Speeding forward in time....since the Endo/Colonscopy procedures, I had attacks January through March which last 7-10 days each time.  I finally had a break for 2 months and today as I type this I am on day 6 of another episode.  What I wanted to see if anyone has experience the following.  For me each episode is getting worse with the following symptoms: Nausea (horrible), back pain on the left side both in the rib cage (the front and back) at times this pain also gravitates toward my left hip.  I also get diarrhea, bloating, intestinal distress, crashing fatigue and loss of appetite.  What really hits me hard is the rib cage pain that is in the front and back on my left side.  I will be seeing the GI doctor in August; but I am hoping to see him sooner Any input in reference to symptoms is appreciated.    
    • Depression / anxiety issues
      Hi all  10 weeks ago i was diganoised with celiac with blood work and a endoscopy. I have had the worst 2 years of my life that started with blood being in my stool everyday. I have always suffered with anxiety for as long as I can remember but I always just pushed trough it. I then I started having panic attacks, insomnia and major depression that I could not handle, I could not function, I lost my job because I could not leave my bed, I shaked as I lay in bed everyday uncontrollably. I met with a doctor who put me on lexapro (antidepressant) I finally gave in after 6 months and started taking them, they made me worst than I already was so I had to stop after 14 weeks. Fast forward to 15 months later and the symptoms still persists including the bloody stools, I was in and out of hospital every week and told I had all sorts of conditions, then the blood work and endoscopy Finaly discovered the celiac. I have been on the diet now for 10 weeks, the first week my anxiety went away, the horrible knot in my stomach that I have had everyday, the hot flushes, the tingling I had run trough my legs. This all left but only for a couple of days then it came back, the depression also lifted but has now came back, I have been more than strict with the diet, I check everything twice before I eat it, me and the misses have thrown away everything from our kitchen and replaced it with new things. I had my Vitiam levels checked and I'm deficient in b12, Vit D, all B vitiams. It's like one step Foward 2 steps back in tearms of healing, I know these anxiety / depression feelings are not me but I've had them for so long that I can't seem to see light at the end of the tunnel. The couple of days that they left me when incredible I felt human and alive. Just wondering if any of this has happened to anyone else with celiac or gluten intorlance. Any advice or hope In tearms of healing or am I to feel like this for the rest of my life (I'm 28) by the way. Thanks a lot   
    • So I've been glutened....
      That sounds like a plan JMG.  If things aren't working then make a change, hopefully a positive change.  It seems to me we have more noticeable symptoms sometimes after being gluten-free a while.  I made a mistake last night and ate some tuna canned in water.  It definitely wasn't boring.  I usually have more sense than to eat tuna canned in water but screwed up last night.  They canned  it in broth of some sort.  Ingredients say vegetable broth and soy.  Yuck, not good for me.  It sure tasted good though, just ouch.  I am not saying it had gluten in it, but it does have soy and some kind of unnamed veggie monsters.  So it could be soy, or carrots or some other disgusting vegetable that got me.   Not all celiacs have additional food intolerances beyond gluten, but some do.  My gut could testify to that.  Anyway, if you have bloating, cut out all carbs and sugar for starters.  And try peppermint tea or Altoids.  Over here we have something called Pepto Bismol that helps soothe gut pain and another neat thing called aspirin.  And gluten-free beer as needed.  
    • Gluten free apparently not helping entirely
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    • Gluten Free baby food pouches?
      Anyone know of any baby food pouches that are gluten free?  We love to have them on the go for our kids (not just baby), but I have no idea which ones to get now!  We used to get Meijer brand and Plum.   Thanks!
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