Redvixen210GF hi everyone

[mycarson210]

Hi everyone my name is  DeDee aka REDVIXEN210GF,  46F with 3 grown babies and 5 grandbabies from Texas sharing my roller coaster of diagnosis with celiac

.For over three decades, I have navigated the complexities of living with atypical celiac disease. Diagnosed at the

age of 10, my journey has been marked not only by the common digestive symptoms but also by a constellation of

other medical challenges: severe iron deficiency anemia, malabsorption, hypoglycemia, mitral valve prolapse,

arthritis, migraines, and gastroesophageal reflux disease. These manifestations have made treatment and

management formidable task.

Throughout the years, I have engaged in an array of treatments-Venofer iron infusions, blood transfusions,

antispasmodics, antihistamines, pain management strategies, a gluten-free diet, folic acid supplementation, and

steroids. Yet, these interventions have offered only fleeting symptomatic relief. My body, in its complexity, has

sometimes reacted adversely to the very treatments meant to alleviate my condition. It's as though I am grappling.

with refractory celiac disease (RCD), a rare and severe form of the disease that resists conventional treatment.

approaches.

The trajectory of my health has been one of intensifying symptoms, progressing from severe to highly severe,

rendering my quality of life as something less than tolerable. Since 2006, I have endured this regimen, but on the side.

effects have been harrowing severe allergic reactions, rashes, welts, tachycardia, hypotension, debilitating bone.

pain, profound weakness, and anaphylactic episodes necessitating hospitalization. These reactions are not just.

distressing: they are incapacitating, adding layers of suffering to an already burdensome condition.

My symptoms emerged in childhood, yet a diagnosis eluded me until my mid-20s. Reflecting on a lifetime of

misdiagnoses, I recall the countless days lost to illness, the myriad visits to emergency rooms and doctors' offices.

for symptoms too often dismissed as mere bugs, allergies, or stress-induced migraines. It was only after

advocating for myself post-Medical assistant school and presenting my self-diagnosis to my hematologist/oncologist, that I was

finally referred to a gastroenterologist. The subsequent biopsy confirmed what I had long suspected.

Despite the myriad treatments I've tried, including those I tolerate only with the aid of steroids, my condition.

persists. I am physically deconditioned, short of breath, and plagued by a suite of symptoms: diarrhea, vomiting,

severe pain in my gastrointestinal system and joints, anemia, migraines, and brain fog. The first symptom,

diarrhea, has been a constant since childhood, a harbinger of the complex medical journey that lay ahead.

This is my story, a testament to resilience in the face of a relentless and multifaceted disease. It is a narrative.

shared in the hope of fostering understanding and compassion for those who live with atypical celiac disease and its myriad, often hidden, challenges.

 

[mycarson210]

Join the fight to raise awareness of celiac disease - Together, we can prevent misdiagnoses and irreversible health complications. #SilencedSufferersNoMore

[trents]

Welcome to the forum community, @mycarson210!

Quite a story! Have any of your three children been tested for celiac disease? A couple of more recent and larger familial studies found that well over 40% of the first degree relatives of those with celiac disease had celiac disease themselves when tested, even though most of them had no clue and many were of the silent type.

[Scott Adams]

Welcome to the forum! 

This article may be helpful:

 

 

[mycarson210]

8 hours ago, trents said:

Welcome to the forum community, @mycarson210!

Quite a story! Have any of your three children been tested for celiac disease? A couple of more recent and larger familial studies found that well over 40% of the first degree relatives of those with celiac disease had celiac disease themselves when tested, even though most of them had no clue and many were of the silent type.

No, none of my children have tested positive. However, my youngest granddaughter, Liliana Rena, who is 4 years old, is symptomatic. My oldest son and daughter-in-law are well-versed in handling such situations. We’ve started her on a gluten-free diet for symptom control and  until the doctors and nurse practitioners can figure things out. 😄or get her head out of her ***, the doctor knows me very well as I use to work for and she very diligent but she is very busy and the NP...has been handling the aka tummy aches or stomach bug...

I accompany them because they are not as vocal (I guess you could call it “MAMABEAR” mode) as I am. I’m not afraid to share my personal diagnosis and even drop the names of the doctors I work with. It’s just how I roll! 😎

I won’t let Liliana or any of the babies experience the residual complications that I’ve had to deal with. In a way, I’m the poster child for the cause-and-effect relationship of late-age diagnoses. 🌟

 

5 hours ago, Scott Adams said:

Welcome to the forum! 

This article may be helpful:

 

 

Thank you for shared info any knowledge or resources surmount to very powerful tools

 

[Scott Adams]

Both of my kids and my brother ended up having gluten issues--I'm positive for both DQ2 and DQ8, and got one gene from each parent. My mother also has celiac disease.

[mycarson210]

Im unaware of any relatives truly being diagnosed other than myself ,but I sure it's on  my MGM side as they have multiple dx of colon/ gi cancer history

[Scott Adams]

The current medical recommendation is for all first degree relatives of those with celiac disease to be screened for it on a regular basis. Hopefully you've let your relatives know, but if not, it's a good idea because you might help one of them from years of suffering or worse.