Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Changed Dr's & Got Answers


wckdsxyceliac

Recommended Posts

wckdsxyceliac Newbie

I had been complaining to my old Dr ( Internal Med Spec to boot) for over a year and had gotten really diligent for the last 6+ months I had been in her "care".

From January Until May this year lost 20+ lbs. I had been having problems with diarrhea and guts......... etc for about 1 1/2 year but really didn't stress to much about it first year because it didn't seem too bad. Then got worse, and worse, and worse.

Background:

Back and neck problems for several yeasr to begin with.

Then in March '05 ended up with pericarditis ( inflammation of the heart lining with significant fluid build up - pericaridal effusion) It was REALY bad because I had left it go for several days figuriing I at first had slept on my shoulder wrong and then figuring I had just injured my shoulder. Guess what - when I finally went to the ER that Saturday night ( after I had cleaned my house, cooked a 20 course meal, bathed, fixed my hair, put on makeup and looked to die for ) I got there and they left me sit in the waiting room for 40 minutes. Took me back to a room told them my symptoms. Nurse moves around slowly to get the EKG machine slowlyyyyy hooks it up to me pushes the button prints out the paper. BAMMMMM 3 nurses, 2 doctors, 3 IV's, wires and tubing like I'd never seen on all my movies. Good God thought I was heading to the pearly gates and white light! 4 days in ICU and a new found appreciation of life.

Was told that I have a very high pain tolerance level - no dahh I was married to the first @ss for 10 years!! Only took his 2nd wife 2 yrs before wising up...LOL ( course could've just been stupidity too..:()

This 1st episode of peri was just the beginnning of many. Now have had it 6+ times in 3+ years. KNow the symptoms and just call to get a shot or meds to try and stop its progress before Holy Sh*t hits.

And this was one of my first warnings of Rheumatoid Arthritis, which took them until September of that year to figure out. But not before my house burned down in May 05 to create even more stress that set all the domino's in order.

Lived with those problems for a while and started having the bowel problems but ignored that for a bout a year.

Thanksgiving of last year stress in my life again became unreal and continued for several months. And everything spiraled and I mean spiraled out of control. Jan 3rd ended up back in ICU for heart.

Fought with the old doctor for 6 months and on the last visit I broke down crying in her office becasue I was not one bit better from when I started complaining in Nov/Dec.

She patted me on the back and told me she thought I was just having a breakdown and gave me a huge bag of antidepressants. All because I was crying in her office because she didn't know ow to do her job! At one point she told me I had never mentioned I was having diarrhea or nausea ( this is after monthly visits for MONTHS of repeating the same thig over and over and over) and that she can't treat something if in fact she doesn't know I'm having the problem.

Left her office that day and found a new doctor got in the next day. Ordered blood work like never before.

folic acid defiency

Vit B12 defiency

Vit D defiency

SEVERE anemia and dehydration

thyroid off the wall out of whack

hospitalized for 24 hours for IV's - felt like a NEW PERSON!!!!!

2 days later new dr had me at a GI Dr office within a week had upper and lower GI and several days later dx with celiac disease and posible crohns combo. Labs confirmed the celiac disease

One week later needed my thyroid removed.

One week later had DXA scan - Bone density severe osteoporosis

Now my windowsill above kitchen sink is my own personal pharmacy. 12 different pills not including vitamins and still trying to figure out the celiac.

Sick of salad, sick of fruit can never get sick of meat lov it to much. The bread products that they advertise for gluten free YUCKOOOOO sorry if it can be used for a murder weapon..... come on folks.

O.K. sorry for long winded ness - It's early on a Sunday and I can't sleep as usual.

Please forgive me.

Tracey

~Wckdsxyceliac~


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Welcome, It sounds like you found a good doctor at last. Thank goodness. You have also found a great place here to get you through the process of healing. Do make sure you check all meds and supplements for gluten, your doctor really has no idea so check with the pharmacy or even the maker themselves. Ask any question you need and don't worry about venting a bit. It is a bit of a struggle at first for many reasons, not the least of being the realization that so much of our pain could have been prevented if doctors even looked for celiac. There are getting to be more doctors like the good one you are seeing and I do hope it continues. I hope you heal soon.

ShayFL Enthusiast

Welcome to the boards Tracey. I hope you feel better soon. It is good to vent and thank goodness they found the Celiac!! Now you can finally start healing. No, you cannot get your thyroid back and you will need meds for life for it. But hopefully with enough time, you heal to a point to greatly reduce and even eliminate those other pills.

Please ask if you have ANY questions. There are lots of yummy gluten-free foods. I went for a real challenge and went all the way GRAIN FREE. And I eat very very well.

I make yummy curries in my crock pot. Baked winter squashes with cinnamon and honey. I make cakes, bread, crackers and cookies with almond flour that are sooooo good. I eat beef, chicken, turkey, gluten-free sausage, ALL seafood including fish, eggs....all veggies (steamed, roasted, raw), all fruits (raw, cooked with the almond flour to make cobblers yum!!), quiche with almond flour crusts.....soups.....meatballs with spaghetti squash.....pancakes with almond flour......smoothies.......and the list goes on.

I dont do nightshades either: tomatoes, peppers, potatoes, eggplant.

And I eat VERY WELL!!!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    2. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    4. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,813
    • Most Online (within 30 mins)
      7,748

    doodlebubbles
    Newest Member
    doodlebubbles
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.