Celiac Disease Diagnosis - 24 years later

[NNowak]

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? 

[cyclinglady]

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]

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]

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]

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]

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.