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):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Is It Worth Going To A Doctor?


glutenfreejenny

Recommended Posts

glutenfreejenny Apprentice

I don't have heath insurance because I'm a poor college student ;) Growing up I've been to MANY doctors who have been no help whatsoever. An allergist who told me I was allergic to soy, corn, and tomatoes and sent me on my way. I had to REQUEST an epi-pen. And he simply told me not to eat anything I couldn't. I've been to natural healers, regular docs, gastro docs, etc. After many years of trying to go allergy free and still being really sick I gave up gluten and now I feel waaaay better. It's only been about 2 weeks but it's going really well.

I still have a skin rash and trouble sleeping but my stomach feels 100% better and I'm finally properly digesting my food. My question is should i go see a doctor? Does anyone think it would be worth it? I've heard so many horror stories about docs and celiac, and since i've been Gluten-Free for a while I probably won't test positive. I know I have celiac and don't need a doctor to tell me that and don't want to waste my money if they are no help.

Any suggestions? I know there are some specialists around the SF area where I live, but it could get expensive. I really just want to spend my money on food. Thanks :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Smith & Truslow
Lakefront Brewery



Celiac.com Sponsor (A8-M):
Daura Damm


mushroom Proficient

Hi Jenny, and welcome. Glad to hear that gluten free eating is going well for you. Congratulations on figuring it out!

Yes, many of us have a very hard time finding doctors to take us seriously and who know much about celiac (the minority, it would appear). The answer to your question depends on what's right for you. If you are happy with your self-diagnosis and it resolves your symptoms, than the official diagnosis is not going to be of much use to you. What would be of use to you though is a blood test to determine your nutritional deficiencies. Or you could just decide to supplement in the things that you are likely to be deficient in as a celiac, such as Vitamins D, B12 (use a sublingual) methylcobalamin), folic acid, and calcium, magnesium, zinc, and take a good multivitamin and multimineral.

On the other hand, if part of you doubts your self diagnosis or if your symptoms do not resolve, testing could be of benefit (although it could come back negative too). You would have to resume eating gluten for a couple of months for testing to be valid and even then there are false negatives. The downside of an official diagnosis is that it can sometimes affect insurance issues (life and health).

Good luck on your gluten free journey. :)

  • 2 weeks later...
MrsClaus Newbie

The other info. was good advice. My two point to add is you seem serious most people need to be diagnoised to be convienced to go to that extreme.

2nd Celiacs have a hard time absorbing Iron and may need to get shots or IV therapy to get it built up in the blood. as well as the other things mentioned above. Celiacs are often allergic or sensitive to other things like Dairy so keep that in mind. I have just had 6 treatments of IV Iron.

  • 4 weeks later...
glutenfreeeugene Newbie

Yes if you can find a doctor that not just give you a drug. 25 years ago I had DH and I could

not find one doctor who would help me. They all said it was in my head, no it was on my arms.

I finally decided to go see a Naturopath physician and he ran the saliva test, and told me to eat gluten through the weekend. On Monday they would test me and I turned out to be positive for Celiac.

Now 25 years later the MDs are slowly coming on board. If you dont like your present doctor keep looking and I promise you, you will get some answers.

GottaSki Mentor

Seems to me that if you have found your answer by living gluten-free and your health continues to improve there isn't a compelling reason to get an official diagnosis.

If your symptoms don't continue to improve or you desire an official diagnosis in the future look for a gastroenterologist that takes/wants a Celiac case as many doctors, even GIs don't yet understand Celiac Disease -- although this seems to be improving.

Good Luck to you!

Serversymptoms Contributor
I don't have heath insurance because I'm a poor college student ;) Growing up I've been to MANY doctors who have been no help whatsoever. An allergist who told me I was allergic to soy, corn, and tomatoes and sent me on my way. I had to REQUEST an epi-pen. And he simply told me not to eat anything I couldn't. I've been to natural healers, regular docs, gastro docs, etc. After many years of trying to go allergy free and still being really sick I gave up gluten and now I feel waaaay better. It's only been about 2 weeks but it's going really well.

I still have a skin rash and trouble sleeping but my stomach feels 100% better and I'm finally properly digesting my food. My question is should i go see a doctor? Does anyone think it would be worth it? I've heard so many horror stories about docs and celiac, and since i've been Gluten-Free for a while I probably won't test positive. I know I have celiac and don't need a doctor to tell me that and don't want to waste my money if they are no help.

Any suggestions? I know there are some specialists around the SF area where I live, but it could get expensive. I really just want to spend my money on food. Thanks :)

I selfdiagnosed myself as being gluten intolerance, though lately I have been aware of other health problems. One is my thyroid, I need to get it tested. Second, I need to get my candidia diagnose, and basicall a look at my immune system etc... biopsy. I found out that many with candida may cause a food intolerance.... so I'm really just waiting for my next appointment, this is dire.

I would suggest you to take the candida home test, you can be a suspect of candida. Just google candida spit test, though you can only correctly do the test right after awakening in the morning.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):
    Little Northern Bakehouse



  • Member Statistics

    • Total Members
      129,672
    • Most Online (within 30 mins)
      7,748

    Kate cavanaugh
    Newest Member
    Kate cavanaugh
    Joined

  • Celiac.com Sponsor (A20):
    GliadinX


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):
    GliadinX




  • Celiac.com Sponsor (A21):
    Little Northern Bakehouse



  • Upcoming Events

  • Posts

    • StevieP.
      Thanks so much for that information!! That helps me out alot!!
    • Scott Adams
      It’s completely understandable to feel confused and anxious—colonoscopy prep can feel overwhelming, especially when you’re already dealing with symptoms like loose stools and elevated inflammation markers (that high calprotectin and CRP definitely warrant further investigation!). Regarding the senna tablets: The warning about avoiding senna with IBD (like Crohn’s or colitis) is typically because it can irritate an already inflamed colon. Since you don’t yet have a confirmed diagnosis—but your brother has colitis—it might be worth calling your gastroenterologist’s office today to clarify if you should skip the senna given your symptoms and family history. Some clinics have an on-call nurse who can advise quickly. For the prep itself: Plenvu is strong, so if your bowels are already loose, the senna might be overkill. Stick to clear liquids tomorrow (broth, apple juice, etc.) and stay near a bathroom! For anxiety, remember the procedure itself is painless (you’ll likely be sedated), and the prep is the hardest part. Bring a phone charger or book to the clinic, and treat yourself afterward to something gentle on your stomach (like mashed potatoes or yogurt). Hang in there—this is a big step toward answers. You’re doing great advocating for yourself!
    • Scott Adams
      Great question! Wheat straw dishes are typically made from the stalks of wheat plants (which are naturally gluten-free) combined with a binding resin. While the straw itself shouldn’t contain gluten, the safety depends on how the product is processed. Some manufacturers may use wheat-based binders or process the straw in facilities that handle gluten, creating cross-contact risks. To be safe, I’d recommend reaching out to the company directly to ask: 1) If their wheat straw material is tested to confirm it’s free of gluten proteins, and 2) Whether the production line avoids cross-contamination with gluten-containing ingredients. Many brands now cater to gluten-free consumers and will provide detailed answers. If you’re uncomfortable with the uncertainty, alternatives like bamboo, ceramic, or glass dishes are inherently gluten-free and worry-free. Always better to double-check—your diligence is totally justified!
    • 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.
    • Scott Adams
      Since you have a confirmed celiac disease diagnosis alongside severe IgA deficiency, consulting an immunologist is a reasonable step to better understand the implications of your immune status. While many IgA-deficient individuals remain asymptomatic, the deficiency can occasionally be linked to increased susceptibility to infections, autoimmune conditions, or other immune-related concerns. An immunologist can assess whether additional monitoring or preventive measures (e.g., vaccinations, infection screening) are warranted. Given your location in Atlanta, academic medical centers like Emory University may have immunologists familiar with IgA deficiency, even if they don’t specialize exclusively in it. Telemedicine is also a great option—consider reaching out to specialists at institutions like the NIH, Mayo Clinic, or Cleveland Clinic, many of whom offer remote consultations. If you haven’t already, checking with the Immune Deficiency Foundation (IDF) for provider recommendations might help. It’s always wise to gather expert insight, especially since celiac and IgA deficiency can coexist with other immune dysregulation.
×
×
  • Create New...