Jump to content
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?


Changed Dr's & Got Answers

Rate this topic

Recommended Posts

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.


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.



Share this post

Link to post
Share on other sites

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.

Share this post

Link to post
Share on other sites

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!!!

Share this post

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Top Posters +

  • Upcoming Events

    • May 29, 2019 04:00 PM Until 08:00 AM
      Celiac Emotional Healing Support Group
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • June 01, 2019 Until June 02, 2019
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
    • July 07, 2019 Until August 03, 2019
      For more information, visit www.kefss.com or call (407) 255-6550. info@kefss.com 

      KEF USA Summer Camps Announces the New KEF Gluten-Free Camp in Orlando, Florida for Youths with Celiac Disease.

      [Orlando, FL February 6, 2019]-KEF USA is excited to announce that we will offer a new 100% gluten-free camp program to give kids and teens with Celiac Disease a safe, exciting and healthy summer. KEF USA programs offer fun and unique experiences that can only be found in Orlando, Florida. Campers explore the theme parks and local attractions, make new friends, discover new interests and create memories that last a lifetime.

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
    David Kirkpatrick
  • Forum Statistics

    • Total Topics
    • Total Posts
  • Who's Online (See full list)

    There are no registered users currently online

  • Forum Discussions

    Hi Lfortson, I assume you are on the gluten-free diet?  So no wheat, rye or barley?  That's good, but there are about 10% of celiacs who react to oats also.  So you might want to get rid of oats for several months and see if things improve. Another somewhat common food issue is dairy.  Some people can't digest lactose (cow milk sugar), and some can't digest casein (cow milk protein).  So it might help to eliminate all dairy for several months also.  Almond milk is a possible substitute
    Thank you for all of the suggestions and information.  I will see a lot of the symptoms that I have that I didn't mention listed caused by lack of certain enzymes.  I have blood tests every 3 months. That is when I noticed my cholesterol, etc. not in check.  I eat too many carbohydrates because it causes less diarrhea than a lot of vegetables.  But in talking to 3 of my sisters they are already on medication for the problem.   One has Celiacs the other has Sjorgrens which I also have.  I'm conce
    For the fog and memory, it can be many things, the brain requires certain ratios and amounts of fat to function, it also requires b-vitamins the full spectrum among other amino acids, minerals and vitamins, nerve functions require magnesium, potassium and other things to fire right.  Celiac can hamper the ability to break down and absorb nutrients, digestive issues and enzymes can further complicate this, and trying to eat the right ratios of foods. I supplement with Liquid Health Mega B-compl
  • Blog Entries

  • Create New...