Jump to content

  • 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

Did Your Persistance Help Lead To Your Diagnosis?

Anya78

By Anya78
in Doctors

Recommended Posts

Anya78 Explorer
Anya78
Posted

I'd like to hear stories of people who experienced persistent symptoms but were either misdiagnosed or their doctor insisted the problems were all in your head. Specifically, I would like to hear stories from individuals who took a very active role in getting their own diagnosis of Celiac (or any other disease, really).

I have Celiac disease but my story isn't particularly dramatic. I was told I had IBS for years until I insisted my doctor test for Celiac after my dad was diagnosed.

Please share your stories. I'm looking for people to talk to for a project I'm working on. (Don't worry, I won't use your story unless I've communicated directly with you.)

Thanks!

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

Celiac.com Sponsor (A8-M):


Morrisun Newbie
Morrisun
Posted

I was misdiagnosed for over 10 years! I went to different Dr's (military) multiple times and was told that it was either normal to have constant diarrhea to the point where I could hardly leave my house, or I had IBS. When I was pregnant it got so bad that I literally only left my house if I absolutely had too. I told my OB/GYN and she told me all I needed was more fiber!! Another Dr. told me that it was totally normal for someone to take the max dose of Immodium every day. She didn't seem to care when I told her I was doing that and I STILL had uncontrollable diarrhea. It was a nightmare, complete nightmare! That entire time they never once thought I needed to see a GI doc.

happygirl Collaborator
happygirl
Posted

I was given multiple diagnoses, but none of them seem to fit. I was sick for about 8-9 months after a severe bout of mono.

Had seen a GP, rheumatologist, infectious disease dr., and gastroenterologist, and none of them ever suggested it.

My mom read an article about Celiac in Time magazine (July 2004) and asked me to be tested for it.

None of my doctors ever considered it.

psipsina Rookie
psipsina
Posted

I haven't been tested for celiac but I definitely have gluten intolerance with some assorted other intolerances and I had a systemic overgrowth of candida. I was never diagnosed by a MD. A friend gave me a book about food allergies and I realizes that all sort of what I thought were seperate issues could be traced back to food allergies. I went to see a naturopathic doctor (ND) who did an IgG allergen test and diagnosed me with the candida. Since my diagnosis my arthritis and migraines are gone completely. I also feel much healthier over all and less brain-foggy. None of my doctors ever thought of food intolerances because my problems weren't GI related. To this day they accept that I have these intolerances but I don't think they really understand them. The last time I was in the hospital and I tried to explain my diet the doctor wrote on my chart that I needed a "diabetic diet" and the food people brought me a gluten filled dinner!!! My poor husband had to bring me my food thru a multiple day stay because they couldn't understand gluten free, cows milk free, yeast free foods!

HouseKat Apprentice
HouseKat
Posted
I'd like to hear stories of people who experienced persistent symptoms but were either misdiagnosed or their doctor insisted the problems were all in your head. Specifically, I would like to hear stories from individuals who took a very active role in getting their own diagnosis of Celiac (or any other disease, really).

I've had symptoms since approximately age 11. I'm 34 now. When I was in high school I started doing my own research on digestive problems because I the doctors I was dealing with were clueless. As soon as I read about celiac it sounded like my symptoms exactly - except for the weight loss aspect. For the next fifteen years I brought it up with each new doctor and each one dismissed it because I was overweight.

Five years ago, my grandfather was diagnosed with celiac. I told my doctor at the time who said, "Celiac disease isn't hereditary." In summer of 2007, my aunt was diagnosed with celiac and told me that it was indeed hereditary. She suggested that I go gluten-free and I started feeling better immediately.

My primary care physician sent me to a GI specialist who proceeded to tell me that celiac was not hereditary and that the blood test results would be conclusive even though I had been off gluten for three months. The blood tests of course came back negative, so then he tried to talk to me about IBS.

I don't care that I don't have an official diagnosis, I feel better off gluten and I will never go back.

Kate

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    2. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
    3. Scott Adams
      - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

      This idea comes up often, but it’s important to separate theory from what’s actually supported by evidence. In celiac disease, the immune system does not “forget” gluten in a permanent or reliable way, even after long periods of avoidance, and the celiac genes do not turn off. While antibody levels (like tTG IgA) can normalize on a strict gluten-free diet an...
    4. Scott Adams
      - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold...
    5. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Medications

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fa...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      need help understanding testing result for Naked Nutrition Creatine please

      By Scott Adams · Posted

      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medications

      By Scott Adams · Posted

      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Gluten tester

      By Scott Adams · Posted

      I am not aware of an air detector for gluten, but Nima Partners sells a device that can detect gluten in minutes in a small sample of a meal or food that you eat. They are also a sponsor here for full disclosure: https://nimanow.com
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.