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

Gp Referring Me To Gastro

skbird

By skbird
in Doctors

Recommended Posts

skbird Contributor
skbird
Posted

Earlier this summer (June) I had gone to my GP to basically brag about how well going gluten free was going for me and could I just get some basic tests for autoimmune stuff just to make sure nothing else was going on. I then tested neg on all thyroid stuff and most arthritis stuff but had a positive ANA so my GP sent me to a rheumy who tested me for everything and determined that while I still had a positive ANA, I was ok. The weird thing was about the time I got the first tests done, I started having joint pain, was already having increasing chest pain, and lots of stomach problems (IBS, etc). I spent about two months this summer not feeling well about 80% of the time. But the rheumy said I was ok and I really should see a gastro for my stomach stuff.

So I called my GP and he said I had to come in first (grrr, I have to pay for everything until I hit $3,500 so that wasn't very cool) but I went yesterday and saw him, after trying to decide if all this was really going to be worth it. Turns out the problem was that about 2+ years ago this GP of mine had referred me to a gastro (I forgot...) and I'd cancelled on the gastro because I was not symptomatic at the time. My GP had referred me because I had told him in my initial appointment that I was diagnosed with IBS at 22 (I was 32 at that point) and that I did have some food reactions, but wasn't sure what all else.

Evidently, the gastros in my town are so busy (uh, that says something, doesn't it?) that if you cancel on them, they may not take you again. So my doc wanted to warn me of the difficulty in getting me back in and to tell me how gastros operate. I was feeling like I was being scolded and so I asked if that was the case, or if I had "difficult patient" on my chart and he said no, but that he knows me and appreciates my abilities to think and that while I don't always come to the same conclusions he does about my health, this is because he thinks from a clinical point of view, while I don't and that he's also sure I know lots about some things he knows little about, as he's into breadth and I'm into depth. He also said the gastros diagnose by algorhythm, meaning they start in one place, and if the result/answer is yes, then they go to this next step, and if it's no they go to this other step. He said they don't have a lot of time to talk so don't expect that at first, and that they will be very thorough. And if they need to give me a med to calm something down first, then I need to do that.

I asked again if I was being scolded and he said no, he was just trying to prepare me for this experience. He said that after a certain amount of testing, they would either know what was going on or wouldn't and then they could talk more about it and we could come up with a more "exquisite diagnosis" - his words. And that if they had no luck, he could send me to Davis or Stanford - both big medical schools. I kind of freaked at that because anyone I've known who's gone to either of those has been REALLY sick (or dying) and I told him that. I also apologised for not going to the gastro at the time but said I was not having symptoms, this has happened before in my life where it all goes away. He said that is the nature of IBS, which he also said is a diagnosis of exclusion (which I already knew).

I told him that I was concerned about the gastro looking at gluten as a problem because I don't eat it, unless glutened (which to my knowledge, only happened once this entire summer, when I had Tums). He said, Gluten is everywhere! how do you know? I said, yes it's everywhere, but you have to understand I am so fastidious, I have done things that not even most people know to do, like toss my no-stick pans, etc. Also I know very well my gluten reactions now, and how miserable I was for two weeks when I had 4 Tums. He then said that I may find that gluten isn't my problem. I said definitely it is a problem, but he said, it may not be the *big* problem. Well, yeah, that's a certain possibility, why would I have been getting so sick all summer?

Anyway, I am of mixed feelings about all of this. I am not crazy about having to submit to a series of tests with little dialog with the gastro. I don't think I'm so sick I should be sent to a medical school center. In fact, most of the time I have a hard time wrapping my brain around the idea I'm sick at all. (denial? or what? I just don't know.)

One thing I am certain about, I am pretty sure my goal of going to England for my birthday next June (35th birthday - we went to England for my 30th) is just about shot. I have a small savings account that will get wiped out ($1,000) by this as I already owe about that much for my rheumy stuff this summer, and I will be on the hook for the next $2,000 until my insurance kicks back in, and then Jan 1 it starts over again (another $3,500 to pay out of pocket). So I am confused, mildly depressed, and wondering what will/can come of any of this and will it be good. Sigh.

Anyone have any analysis of this? If I bail on the gastro again, my doctor may never speak to me again! :)

Stephanie

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

Celiac.com Sponsor (A8-M):


Guest GITRDONE
Guest GITRDONE
Posted

Hello Stephanie, I can recomend a doctor in Reno (I know it means about a 3 hour trip +$), but as I stated in a earlier thread I think I have seen about 10 different doctors over the past 16 years, and I walked into Dr, Sande's office and did the same symphtom speech I give all the other docs (blah-blah-blah) and he picked right up on Celiac. Something I had never even heard of. I think after being so sick for so long, so misdx, same doc just different meds, that we say the same thing over & over like a memorized speech. I tend to forget the little changes and/or you just seem to "deal" with it because you don't want another med or hear that something "else" might be wrong with you, something else you have to deal with. And also like you, why would I go to the doctor if I feel good???? I find it so easy not to go for the follow ups, beacuse I do feel good. But I have to admit that since I have been reading all I can in this forum I have made a list of blood tests I want ordered before my next follow up visit (next month), just so I don't have to make two trips to Reno (I live near Susanville, Ca.).

My hat is definetly off to you. I don't have near the allergies or illnesses you have to deal with, (I don't think, one the tests Im requesting is a food sesitivity test).

Also, I have never heard of a doctor refusing to see someone if they skipped a appt., maybe charged them, but not refuse them.

Good luck, and if I can help let me know.

Susan

skbird Contributor
skbird
Posted
  • Author

Yeah, I think the bit about making it harder to get me in is a little odd. I mean, I can understand they are busy, but that isn't enough of a reason. I have also heard there is a great gastro in Grass Valley or Nevada City, posted by someone on this board or another. Anyway, if I have difficulty, I will look into other docs. I am having a bad IBS flare up this week, it's making me mad because I thought this was all based on my food issues but since I have eliminated so much and am still having flares, there must be something else going on.

The worst is that I don't at all think of myself as sick. Not at all. I think there must be a missing cog in my brain! :D

Thanks, and I'll keep this in mind in case I can't get in, at least this year! (would like to have all testing done before Jan 1, when my insurance renews...)

Stephanie

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 wellthatsfun's topic in Gluten-Free Recipes & Cooking Tips
      1

      heaps of hope!

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to bui...
    2. Scott Adams
      - Scott Adams replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fruits & Veggies

      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate...
    3. Scott Adams
      - Scott Adams replied to yellowstone's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Cold/flu or gluten poisoning?

      Your satiation is challenging and a common dilemma for those with celiac disease or non-celiac gluten sensitivity: distinguishing between a routine viral illness and a reaction to gluten exposure. The overlap in symptoms—fatigue, malaise, body aches, and general inflammation—makes it nearly impossible to tell them apart in the moment, especially with a h...
    4. Scott Adams
      - Scott Adams replied to hjayne19's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac Screening

      Your situation highlights a difficult but critical crossroads in celiac diagnosis. While your positive blood test (a high TTG-IgA of 66.6) and dramatic improvement on a gluten-free diet strongly point to celiac disease, the gastroenterologist is following the formal protocol which requires an endoscopy/biopsy for official confirmation. This confirmation is...
    5. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Related Issues & Disorders
      2

      New issue

      Your experience of being medically dismissed for decades, despite a clear celiac diagnosis since 1994, is unacceptable. It is a tragic common thread in our community that the systemic failure to understand celiac disease leads to a cascade of other diagnoses—like SIBO, IBS, depression, and now the investigation of MS or meningioma—while the core autoimmune con...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,090
    • Most Online (within 30 mins)
      7,748
    LVanderbeck12
    Newest Member
    LVanderbeck12
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      heaps of hope!

      By Scott Adams · Posted

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
    • Scott Adams
      Fruits & Veggies

      By Scott Adams · Posted

      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate or histamine intolerance. The instant burning, heart palpitations, and anxiety you describe are classic systemic reactions to food chemicals, not typical celiac reactions. It makes perfect sense that your body rejected these foods from birth; the gagging was likely a neurological reflex to a perceived toxin. Now that your gut has healed, you're feeling the inflammatory response internally instead. The path forward involves targeted elimination: try cooking fruits and vegetables (which often breaks down the problematic proteins/chemicals), focus on low-histamine and low-salicylate options (e.g., peeled pears, zucchini), and consider working with an allergist or dietitian specializing in food chemical intolerances. 
    • Scott Adams
      Cold/flu or gluten poisoning?

      By Scott Adams · Posted

      Your satiation is challenging and a common dilemma for those with celiac disease or non-celiac gluten sensitivity: distinguishing between a routine viral illness and a reaction to gluten exposure. The overlap in symptoms—fatigue, malaise, body aches, and general inflammation—makes it nearly impossible to tell them apart in the moment, especially with a hypersensitive system. This ambiguity is a significant source of anxiety. The key differentiator often lies in the symptom pattern and accompanying signs: gluten reactions frequently include distinct digestive upset (bloating, diarrhea), neurological symptoms like "brain fog," or a specific rash (dermatitis herpetiformis), and they persist without the respiratory symptoms (runny nose, sore throat) typical of a cold. Tracking your symptoms meticulously after any exposure and during illnesses can help identify your personal patterns. Ultimately, your experience underscores the reality that for a sensitive body, any immune stressor—be it gluten or a virus—can trigger a severe and similar inflammatory cascade, making vigilant management of your diet all the more critical. Have you had a blood panel done for celiac disease? This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Celiac Screening

      By Scott Adams · Posted

      Your situation highlights a difficult but critical crossroads in celiac diagnosis. While your positive blood test (a high TTG-IgA of 66.6) and dramatic improvement on a gluten-free diet strongly point to celiac disease, the gastroenterologist is following the formal protocol which requires an endoscopy/biopsy for official confirmation. This confirmation is important for your lifelong medical record, can rule out other issues, and is often needed for family screening eligibility. The conflicting advice from your doctors creates understandable anxiety. The challenge, of course, is the "gluten challenge"—reintroducing gluten for 4-6 weeks to make the biopsy accurate. Since your symptoms resolved, this will likely make you feel unwell again. You must weigh the short-term hardship against the long-term certainty of a concrete diagnosis. A key discussion to have with your GI doctor is whether, given your clear serology and clinical response, would be getting a diagnosis without the biopsy.
    • Scott Adams
      New issue

      By Scott Adams · Posted

      Your experience of being medically dismissed for decades, despite a clear celiac diagnosis since 1994, is unacceptable. It is a tragic common thread in our community that the systemic failure to understand celiac disease leads to a cascade of other diagnoses—like SIBO, IBS, depression, and now the investigation of MS or meningioma—while the core autoimmune condition is neglected. The constant, severe flu-like symptoms and new neurological concerns are absolutely valid and warrant serious investigation for connections to celiac-related autoimmunity or complications like refractory disease. It is enraging that you must fight so hard to be heard. While I don't have a medical answer about MS or meningioma links, your instinct is correct: relentless symptoms require a specialist who understands celiac disease beyond the gut. Regarding the California proclamation, it is a symbolic advocacy effort; reaching out to the women mentioned may provide supportive community, but your advocacy with your local representative is the most direct action. 
×
×
  • 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.