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

Doctor #1 Vs Doctor #2


MurrayM

Recommended Posts

MurrayM Rookie

Five years ago I told my GP (Doctor #1) about how I had been surfing the Internet looking for ways to heal a really bad case of plantar fasciitis, and how I kept stumbling into Celiac sites as I searched for ways to get more calcium into my system.

One day I checked out the symptoms for Celiac disease and found out I had a bunch of them. I took gluten out of my diet and was re-born! No more three squirty dumps every morning. No more heinous flatulence. No more fighting to stay awake in the afternoons and evenings. No more mental lethargy. No more emotional disconnection. I told all this to Doctor #1, so he sent me for a blood test for the gluten anti-bodies, and it came back negative...so I just figured I was gluten intolerant and have lived since then about 99% gluten free. I mean, I didn't have the anti-bodies right? How could the odd breaded seafood platter while eating out, or bowl of Corn Flakes hurt?

Lately, I've had some problems that made Doctor #1 send me to Doctor #2, our local general surgeon. When #2 said he was going to give me a colonoscopy, I said, "Hey that's great because I'm curious what's going on up there anyways..." and I related the story above.

He listened and then said, "You're a Celiac. You have Celiac disease. I'm willing to put money on the table right here and now, I'm so sure of it".

I was SHOCKED!

He further explained how there was no way the blood test could give a positive result, because I'd been gluten free for a time before the test.

Then the questions started. Did Doctor #1 know the blood test was going to be negative because I hadn't been eating gluten for quite a while, but sent me for the test anyways to put my crazy idea to rest? What damage have I done in the last several years? Is Doctor #2 nuts for giving such a firm diagnosis without laying a finger on me? What will my colonoscopy show? Why didn't I just believe myself, listen to my body, and disregard the blood test results?

Thanks! That's post number two and it got a lot off of my chest!!!

Murray


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

Well Murray--welcome to our world. We all have a doctor #1 and #2 and many of us have 3, 4, 5 ,6 and on and on. Your doctor #1 just is not as well informed as your doctor #2. I have probably seen 6 doctors now and the one I have now tells me there is no doubt in his mind, he says he is 99% sure I have celiac disease and would never put me through a challenge. He is always ready to listen to anything about celiac, welcomes info I bring him--he's wonderful.

Be happy your doctor #2 is willing to listen. You may have found a gem.

Ursa Major Collaborator

Hi Murray, I agree with Deb. Listen to your new doctor, and become 100% gluten-free! Even if it is 'only' a gluten intolerance, you still shouldn't cheat on the diet. Because even if you don't destroy your villi, you can have all kinds of other damage if you keep getting gluten.

kbtoyssni Contributor

Lucky you that your story only has two doctors! I think doctor 2 is absolutely correct, but that doctor 1 didn't mean any harm. Most docs aren't well educated on the disease and simply don't realize that if you're not eating gluten the tests will come back negative. Most blood tests will show up positive no matter what you're doing to your body so celiac testing is unique in that regard. The best part of celiac is that once you're diagnosed, most of the damage that has been done will generally be reversed within a year or so. As long as you stay gluten-free, you will be able to be perfectly healthy.

I'm not sure what he'd find in a colonoscopy. Most celiacs get endoscopies (intestine scope) to test for damage (which would also be likely to come back negative for you).

MurrayM Rookie

Hi again, and thanks for saying hello.

I'm not sure what he'd find in a colonoscopy. Most celiacs get endoscopies (intestine scope) to test for damage (which would also be likely to come back negative for you).

(*TMI ALERT*) He wants to take a peek as to why I'm having small amounts of blood leaking out about 1 hour after my last poop in the morning. That's what my appointment was originally for...the Celiac diagnosis came completely out of the blue after I told him my story. Not a speck of gluten will pass my lips knowingly again!!!

Murray

wowzer Community Regular

I sure wish there were more doctors like that. I have to say my family doctor agrees even though my blood work came out negative that I still could have celiac. The more I read on this site makes me think that it may be on both sides of my family. Some just weren't diagnosed. My little sister was diagnosed.

Jenny1972 Rookie

So glad I found this site. Mydoctor told me I have celiacs even though blood work didn't confirm this. been gluten free for two months and feel so much better. Then I saw specialist at hospital and he said i don't have celiacs. they want to do a bowl bi-opsy and expect me to eat gluten for two weeks before otherwise it will be negative. Clueless if you ask me.


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Patiently Waiting to See Results

    2. - trents replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      75

      How Come Gluten Didnt Bother Me In Italy

    3. - Gigi2025 replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      75

      How Come Gluten Didnt Bother Me In Italy

    4. - Rejoicephd replied to JulieRe's topic in Related Issues & Disorders
      7

      Oral thrush question

    5. - catsrlife posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Patiently Waiting to See Results


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,897
    • Most Online (within 30 mins)
      7,748

    Sgp
    Newest Member
    Sgp
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
    • Rejoicephd
      Thank you @JulieRe so much for sharing this extra information. I'm so glad to hear you're feeling better and I hope it keeps moving in that direction. I feel I'm having so many lightbulb moments on this forum just interacting with others who have this condition. I also was diagnosed with gastric reflux maybe about 10 years ago. I was prescribed ranitidine for it several years back, which was working to reduce my gastric reflux symptoms but then the FDA took ranitidine off the shelves so I stopped taking it. I had a lot of ups and downs healthwise in and around that time (I suddenly gained 20 pounds, blood pressure went up, depression got worse, and I was diagnosed with OSA). At the time I attributed my change in symptoms to me taking on a new stressful job and didn't think much else about it. They did give me a replacement gastric reflux drug since ranitidine was off the shelves, but when I went on the CPAP for my OSA, the CPAP seemed to correct the gastric reflux problem so I haven't been on any gastric reflux drug treatment for years although I still do have to use a CPAP for my OSA. Anyway that's a long story but just to say… I always feel like I've had a sensitive stomach and had migraines my whole life (which I'm now attributing to having celiac and not knowing it) but I feel my health took a turn for much worse around 2019-2020 (and this decline started before I caught covid for the first time). So I am now wondering based on what you said, if that ranitidine i took could have contributed to the yeast overgrowth, and that the problem has just been worsening ever since. I have distinctly felt that I am dealing with something more than just stress and battling a more fundamental disease process here. I've basically been in and out of different doctor specialties for the past 5 years trying to figure out what's wrong with me. Finally being diagnosed with celiac one year ago, I thought I finally had THE answer but now as I'm still sick, I think it's one of a few answers and that maybe yeast overgrowth is another answer. For me as well, my vitamin deficiencies have persisted even after I went gluten-free (and my TTG antibody levels came down to measurably below the detectable limit on my last blood test). So this issue of not absorbing vitamins well is also something our cases have in common. I'm now working with a nutritionist and taking lots of vitamins and supplements to try and remedy that issue. I hope that you continue to see improvements in working with your naturopath on this. Keep us posted!
    • catsrlife
      Back at the end of July I got this rash on both of my forearms. It started on my right and continued to the left. It was on the top and side. The rash has bumps that would pop with clear liquid if scratched. They would almost crystalize and scab up. They reminded me of chicken pox. They would scab for weeks and not heal much at all except for the blood clotting. If the scab was scratched off, it would bleed and bleed until it scabbed up again. The skin has lost its pigment where the scabs are. I figured it was probably either the plant I had trimmed around the 15th or some reaction to the magnesium complex I was taking or an allergic reaction to the asthma meds I was on. I stopped the asthma meds and the magnesium. The rash seemed to get better but when I took the asthma meds it flared up again so I went to the urgent care as my doctor was unavailable. The UC doctor said it probably wasn't the meds and asked about my diet. I said I was strict keto. I usually am, but there is a story around this. I feel amazing on keto. When I eat sugar, wheat, and starchy veggies I feel horrible. Blood sugar goes up, IBS type symptoms, brain fog, etc. But I have a horrible addiction to carbs so I blow it sometimes and after Mom died in 2023, I fell off the wagon. No rashes, just weight gain. I finally went back on keto and then around that time had a piece of pizza (or so, it's hard to stop the carb rush.) So I was strict keto, off and on. She ignored that and prescribed some allergy meds. It didn't go away.  What was happening by then was that the rash was now on my upper elbows, both of them, on the back of my arms. It starts with a very itchy bump, spreads around it and sometimes just burns like crazy and other times just itches. Then it started on the sides of my knees on the oustide, a little bit down the sides of the calves. It's not as bad there as it is on my arms even though it comes and goes (and so does wheat in my diet.) I then got three tiny blisters on each hand, 3 on the insdie of my index finger on the right hand and 3 on the inside of middle finger of my left hand. There is still a little scab there even though it was two weeks ago. No more have appeared on the fingers. But right now the back of the arms above my elbows are starting to itch. At some point I started to think mites from the possum that was sneaking into our house but it's been 3 months and they would be dead already. It wouldn't be from humans because I don't go near any humans although I did take an Uber to the doctor and the bus back. Plus, it's symmetrical. It starts on one side and is almost identical on the other.  I did my DNA with Ancestry and MyHeritage. I don't have the HLA-DQ2 or HLA-DQ8. I do have HLA-DQ2.2. I took the blood test but it was negative. Then again, I don't eat wheat every day. I rarely eat it except for lately when I've been preparing for the blood test if I have to take it again. I don't like to. It makes my joints hurt, gives me brain fog, stomach problems, I sleep in the middle of the day, etc. I have a doctor appointment tomorrow. I hope that she will be more serious about this than the UC doctor was.  So I have no idea. With my luck they'll magically disappear before the doctor appointment. That's what happens with everything.
×
×
  • 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.