Lost

[Jmartes71]

I was diagnosed in 1994 with celiac disease by Kaiser with biopsy and was told to stay away from wheat and I'll be just fine.I have and Im not.Had my first baby in 94 and my tolerance level was horrible.Having a celiac episode we all know how its horrible with the vomiting and digestive issues. Never googled because internet wasn't around.Still pushing through that's my normal.In 2001 was busy with my sick baby that went through the ringer with severe chronic Neutropenia it was horrible times he out grew it now almost 24 years old this month. In 2007 still digestive issues had blood drawn and have many food allergies.  told my primary im celiac ( i had primary Dr 25 YEARS up til May 2025.My savior was tramadel thats what my doctor gave me and thats what ive been on up til 2023 stopped when i got covid for the 3rd time to give my body a break. Been through  every test.Gi Dr as well who said I wasn't. celiac in 2024 Ive been glutenfree for 30 years at the time now 31 years. Im going to Standford this year and had breath test and sibo which is positive. I have ulcers on my body and I asked how when it was diagnosed as staph 4 years ago, not wanting to admit its from my dismissed celiac condition. Currently dealing with that.My last job was a bus driver last day of work was in March 2023. I was released from my job because of being out so long dealing with health issues. Disability is not helping at all, no income stressed.Currently doing more test and will be going under again next month with new GI doctor at Standford. Depressed because Im literally falling apart and it seems as if menopause is activating it more.Not eating what im not supposed too,always feeling full, tired, eye sensitivity to sunlight, constant bumps in back of my throat, pain down my left leg. Going through more test.Why is it so hard to get help or is it because I was dismissed all these decades?Should I take legal action?Im Currently not doing well which is keeping me from holding a job and im getting older.I can't push through anymore.Im very much into natural supplements that help but im still declining with one thing after another. What miracle will help so I can get back in the production line to make money.

[Scott Adams]

I’m so sorry you’ve been struggling for so long without the answers or relief you deserve. It’s incredibly frustrating to have a celiac diagnosis yet still face debilitating symptoms, especially after decades of strict gluten-free living. Your history of chronic health issues—SIBO, food allergies, recurrent infections, and now potential complications like nerve pain (left leg) and mucosal ulcers—suggests there may be overlapping conditions at play, such as autoimmune comorbidities (e.g., Hashimoto’s, Sjögren’s), nutrient deficiencies, or even refractory celiac disease (though rare). Stanford is an excellent step forward, as their specialists may uncover missed connections.

The medical gaslighting you’ve endured is unacceptable, and while legal action is an option, focusing on thorough testing (e.g., repeat endoscopy, micronutrient panels, autoimmune markers, skin biopsy for dermatitis herpetiformis) might be more immediately helpful. Menopause can absolutely exacerbate underlying inflammation, so hormonal imbalances should also be explored. For symptom relief, some in the celiac community find low-dose naltrexone (LDN) or mast cell stabilizers helpful for systemic issues, but a functional medicine doctor (if accessible) could tailor supplements to your needs.

You’re not alone in this fight—keep advocating fiercely at Stanford. Document everything meticulously; it strengthens both medical and potential disability claims. Sending you strength—this shouldn’t be so hard, and you deserve real solutions.

[knitty kitty]

@Jmartes71,

What a stressful journey!  I'm so glad you found your way here.  

Have you been checked for nutritional deficiencies?  Doctors don't recognize vitamin deficiency symptoms.  Which supplements are you taking?  Just herbal ones or vitamins?

[knitty kitty]

@Jmartes71,

Please do get checked for nutritional deficiencies.  A good B Complex, Vitamin D, Benfotiamine (a form of Thiamine Vitamin B1 that promotes intestinal healing), Vitamin D and magnesium are a good way to start.

Correcting nutritional deficiencies with Thiamine supplements (like Benfotiamine), B Complex, and Vitamin D were my miracles.

How are you doing?  Sending prayers.