Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Celiac Disease Diagnosis - 24 years later


NNowak

Recommended Posts

NNowak Collaborator

I’ve been a diagnosed celiac since 1995. I was fortunate to show improvement within 6 months and completely heal within 2 years. 24 years later I’ve dropped over 30 pounds in 2 years and have neurological symptoms too pronounced to ignore. In fact, I fell on my steps 2 years ago and fractured 4 vertebrae, 2 ribs and punctured a lung. My PC doc at that time ignored my family history of pernicious anemia and hemochromatosis when I had a follow up with her at that time. 2 years later she accused me of anorexia and told me I need to force feed myself if I really want to feel better. She humored me with a CBC and ran my B12, folate and hormones. Two nurses called twice with four different stories; pernicious anemia, folate deficiency, malnutrition and temporary vitamin deficiencies. My diet has consisted of high protein and veggies for the past 25 years. I tried to tell the nurses that my issue is clearly malabsorption as my B12 and folate should be through the roof with my diet. I asked for a ferritin level, vitamin D, calcium and vitamin K. Doc declined that and the obvious argument that I have malabsorption - I don’t have any risk factors according to the doc. 

The vitamins make me sick and dehydrated so I argued to be referred to a gastro. He decided I had too many problems, he didn’t treat folate deficiency, laughed when I asked him to test for an absence of intrinsic factor, said I was wasting his time when I inquired about SIBO, told me I wasn’t skinny (5’7” and 112#), asked if I was REALLY following a gluten-free diet then stated I was young but he’d order an EGD......and by the way, did I have an eating disorder. Next thing I know I’m talking to the nurse about colonoscopy prep. In 24 years I have NEVER been treated like this!!!

I’ve been treating my B12 deficiency with weekly Cyanocobalomin injections and incorporated bone broth, collagen and kombucha into my daily regimen. I continue to lose weight, but my B12 and folate are now within the normal range. Coincidentally, the emergency bathroom visits have subsided and my 12 year long headache is gone. My extremities are still affected neurologically and the right side of my abdomen remains sore, but I’m not doubled over in pain anymore. 

I apologize for the long message, but I’m absolutely flabbergasted with the lack of knowledge and compassion from the docs in GR, MI.  We are supposed to be cutting edge with our medical community and this is the extent of their knowledge. I ordered a ferritin level and celiac antibiotics to prove I’m “clean” when I see the next set of doctors. Celiac antibodies are all negative. I’m certain I’m iron deficient as I’m allergic to beef and avoid it completely, so I’ll wait for that before supplementing. Hopefully returning to my original doc who diagnosed me in 1995 will be the right decision. 

Anyone have suggestions?  What am I missing? 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Wow!  Your story is so common, unfortunately.  ?

Once you have an autoimmune disorder, you can develop additional autoimmune disorders.  Your doctors should be screening you for other issues.  

A repeat endoscopy/biopsies done five years after my celiac disease diagnosis revealed a healed small intestine even though my DGP IgA test was still very elevated.  My GI found autoimmune gastritis which is common in those with Hashimoto’s Thyroiditis (which I also have).    My B-12 and Iron are okay for now, but my doctors are watching for lab result decreases.   Your doctors should not just label you as a celiac and then ignore new medical issues.  In fact, they should be following standard practices of follow-up care as recommended by leading celiac disease research centers like this one:

https://www.cureceliacdisease.org/wp-content/uploads/341_CDCFactSheets7_PostDiagnosis.pdf

It sounds like you do not have access to good doctors in your area.  Consider going outside your health network or document everything in writing.  That includes emailing or sending a letter with your symptoms and requesting lab work. Any doctor trying to avoid malpractice should comply or at least let you know why he refuses to do the tests (honestly, his or her reasons may be very valid).  

 

 

NNowak Collaborator

Thank you for your suggestions. I had correspondence with Dr. Fassano and Dr. Guandalini years ago after numerous miscarriages and infertility.  I was fortunate enough to attend a conference with both of them at the University of Chicago in 2003. Perhaps I need to pursue treatment there rather than prolong the frustration in GR. 
 

Thanks again!

cyclinglady Grand Master

Chicago is not far.  Definitely worth pursuing.  

Before I had that repeat endoscopy, I had a gluten exposure almost a year prior.  I have no idea what I consumed, but I suspect it was the antibiotics.  I took three rounds for a bad tooth infection (old root canal gone bad), then got the flu and then a cold all within a six week period.  I suffered for about a month trying to digest food without pain.  But worse, was the development of chronic hives which appeared daily in the afternoon like clockwork.  Always starting with abdominal pain and the head-to-toe hives.  My allergist diagnosed them as autoimmune related.  These lasted over six months.  Antihistamines helped with the itching.  I never really recovered.  I had new GI symptoms like GERD.  My GI suspected SIBO.   Wanted to do an endoscopy but I resisted. Instead, I opted for the “Fasano” diet (super strict gluten-free).  It did not work.  

The endoscopy found the root cause which was the Autoimmune Gastritis which was not there when I was initially diagnosed.  I learned that not everything is due to celiac disease.  

It is so important to have the support of your doctors.  My GI is great and my new Internist, while new to the profession, takes the time to read up on celiac disease.  I do tend to correspond with my doctors via the patient portal (email).   No sense in wasting their valuable time when I think I need a thyroid lab test.  

Keep us posted and keep on advocating for yourself!  

 

NNowak Collaborator

So many parallels!  My body reacts with hives to many foods/stress/whatever.  It seems once that hive reaction starts it’s nearly impossible to clear up. Prednisone has helped with that, and I actually feel the best on prednisone. 
 

Gastritis has been a constant for me my entire life. I was diagnosed with esophagitis for the pain that doubles me over, but I haven’t pursued an explanation for the right side abdominal pain. I’ve altered my diet over the years to the FODMAP diet and stay away from sugars and rice - not sure why I have an issue with either of those. Since starting the B12 injections the uncontrollable “bathroom visits” have subsided. The head of gastroenterology, who didn’t want my questions, has never heard of that happening. 

I’m relieved to hear your young internist is researching celiac in order to care for you, and I will definitely utilize the patient portal consistently. Thanks again for your suggestions. 

NNowak Collaborator

My bloodwork came back on my ferritin levels. It appears I also have hemochromatosis. I can’t help but be disgusted knowing I repeatedly told my PC about my family history of pernicious anemia and hemochromatosis. I’ve suffered trying to keep up with my teenagers these last few years despite crushing exhaustion, chronic pain and migraines the majority of time. The blood tests regarding my liver have been abnormal since 2006 and I was told it’s nothing to worry about. My fault I didn’t press for answers earlier. Now I know and will demand proper care with my updated research. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,363
    • Most Online (within 30 mins)
      7,748

    sarena
    Newest Member
    sarena
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.1k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Sicilygirl
      thank you Scott, what can I do to improve my appetite?
    • Sicilygirl
      My iron is good I had it checked 3 times prior to being diagnosed with Celiac. My energy is better at night which is weird. I need it more during the day to function. This  has been hard to deal with emotionally, mentaly and pysically. Thank God that this website exists. Its helped me considerably since the doctor was of no help. Every body is different and I know that it will take me longer to heal I just have to stay positive and wait.  Also are you hungry ever?
    • Rogol72
      We've got plenty Tiernan's over here across the Irish Sea! I think anything will irritate an open wound in the skin. My dermatologist suggested Aveno moisturiser and E45 Emollient shower cream when she thought it was Eczema. I'm sure they will help during a dermatitis herpetiformis outbreak, or be the least irritating. Rinsing off after exercise should give you some relief. Dapsone is an antibiotic and it does reduce the skin inflammation associated with dermatitis herpetiformis blisters as well as eliminating the itch. I don't think it affects the immune system like oral steroids though. My GP said it can affect the bone marrow ... I believe in terms of red blood cell production. It causes them to break apart prematurely. They measure the reticulocyte count (immature red blood cells) in your blood while on Dapsone to see it's effects. People with a G6PD deficiency are more susceptible to Dapsone side effects. Here's a leaflet from the British Association of Dermatologists explaining Dapsone in more detail ... https://www.skinhealthinfo.org.uk/condition/dapsone/ Your dermaotolgist would need to determine how long to be on Dapsone. I guess if the antibodies in the skin are reduced over time with a strict gluten-free diet, then the need for Dapsone is less likely when glutened. So, Knitty Kitty's advice on Niacin and all things dermatitis herpetiformis related is spot on.  Have you had the skin biopsy yet?
    • disneyfamilyfive
      Good morning, I thought I’d quickly update this post.  A week or so after my test results were posted, my doctor’s nurse called to say 2 of 3 blood tests showed elevated numbers and referred to GI for further evaluation.  It took about 3 -4 weeks to get into a GI, it was over the holidays too, so I’m sure that pushed things out a bit.  Met with the GI who was great, really listened and said that even though the main celiac test was still in normal range, there are 2 tests that are not and in his experience not all 3 tests need to be positive to take the next steps.  He said after listening to all my symptoms, and looking through my recent medical history he felt that celiac was very likely.  5 days later I was in for an endoscopy (and colonoscopy just to cover all bases at once) and 6 days later the biopsy results came back as positive for celiac sprue.  GI of course said a strict gluten free diet, referred to GI registered Dietitian and come back in one year for a repeat endoscopy to determine healing. If symptoms don’t subside (or improve) after gluten free diet for a couple then return sooner. 
    • knitty kitty
      @Matt13  I understand where you're coming from.  Seemed I was reacting to all sorts of foods there for a while, but a low histamine Paleo diet really helps.   We make histamine in our bodies as a useful  neurotransmitter (causing alertness), and also as a response in the immune system.  Histamine is made and released by Mast Cells.  Mast Cells can become hypersensitive to stimulus and release histamine easily, like having an itchy trigger finger.  Mast Cells need Thiamine Vitamin B 1 Benfotiamine in order to NOT release histamine.  Mast Cells that do not have sufficient Thiamine release histamine easily and at the slightest provocation.   Plants and other animals make histamine, too.  By removing high histamine foods from the diet, more histamine can be removed from the body.  We need Pyridoxine, Vitamin B 6, Vitamin C, Cobalamine, B12, and Thiamine B1 to make Diamine Oxidase, an enzyme that breaks down histamine.  If we don't make sufficient DAO ourselves, DAO supplements are available over-the-counter.   Removing Nightshades (tomatoes, potatoes, eggplant and peppers) was very helpful.  Nightshades contain alkaloids that cause Leaky Gut Syndrome wherein large molecules of food can pass through the walls of the intestines into the bloodstream, traveling to other organs and structures where they promote inflammation.   After a few days on the low histamine Paleo diet, the Autoimmune Protocol diet, I started feeling better.  My diet was really restricted, but I felt so much better, I stuck with it.  Eating foods that were easy to digest and low in histamine allowed time for healing.  After a few weeks, I was ready to add one food at a time (two week period) back into my diet.  I had setbacks when I ran into a food my body didn't like, and had to go back to the start, but it was worth doing.  Celiac is a marathon, not a sprint.   Blood tests are not accurate measurements for various B vitamin deficiencies.  Vitamin levels in the bloodstream are different from the amount stored inside cells inside organs where they are utilized.  You can have symptoms of a deficiency yet have "normal" blood levels.  The best way to test for a B vitamin deficiency is to take it and look for health improvement.  B vitamins are easily excreted because they are water soluble.  Malabsorption in Celiac can affect all the vitamins and minerals our bodies need, not just one.  Do talk to your doctor and nutritionist about supplementing while healing.  
×
×
  • Create New...