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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,930
    • Most Online (within 30 mins)
      7,748

    Mhp
    Newest Member
    Mhp
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • AnnaNZ
      I forgot to mention my suspicion of the high amount of glyphosate allowed to be used on wheat in USA and NZ and Australia. My weight was 69kg mid-2023, I went down to 60kg in March 2024 and now hover around 63kg (just after winter here in NZ) - wheat-free and very low alcohol consumption.
    • AnnaNZ
      Hi Jess Thanks so much for your response and apologies for the long delay in answering. I think I must have been waiting for something to happen before I replied and unfortunately it fell off the radar... I have had an upper endoscopy and colonoscopy in the meantime (which revealed 'minor' issues only). Yes I do think histamine intolerance is one of the problems. I have been lowering my histamine intake and feeling a lot better. And I do think it is the liver which is giving the pain. I am currently taking zinc (I have had three low zinc tests now), magnesium, B complex, vitamin E and a calcium/Vitamin C mix. I consciously think about getting vitamin D outside. (Maybe I should have my vitamin D re-tested now...) I am still 100% gluten-free. My current thoughts on the cause of the problems is some, if not all, of the following: Genetically low zinc uptake, lack of vitamin D, wine drinking (alcohol/sulphites), covid, immune depletion, gastroparesis, dysbiosis, leaky gut, inability to process certain foods I am so much better than late 2023 so feel very positive 🙂    
    • lehum
      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
    • Hmart
      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
    • trents
      Welcome to the forum, @Hmart! There are other medical conditions besides celiac disease that can cause villous atrophy as well as some medications and for some people, the dairy protein casein. So, your question is a valid one. Especially in view of the fact that your antibody testing was negative, though there are also some seronegative celiacs. So, do you get reactions every time you consume gluten? If you were to purposely consume a slice of bread would you be certain to develop the symptoms you describe?
×
×
  • 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.