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

First Gi Appt Today


Megan

Recommended Posts

Megan Rookie

Going to my GI today...first time

And it's my COUNTRY Docotor from abck home, so I got in within like two days, from what my mom has told her...I do not have Celiacs and I am NOT Gluten free, it could be a million other things!!! Hopefully we figure it out because I don't really care what it is at this point so long as I can feel better soon. Any advice?

WISH ME LUCK!!


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



Celiac.com Sponsor (A8-M):



dlp252 Apprentice

Good luck! Take a list of questions and/or symptoms with you, lol. I forgot to mention two very important things to my GI when I saw him that I wished I'd mentioned. I see hime on Monday again for my endoscopy/colonoscopy, so I hope to have time to mention them then.

moonunit Apprentice

Hi! I didn't reply before because I figured I'd be too late for a "good luck" to matter, but good luck anyway!

How did it go?

The only piece of advice I would have maybe suggested is to know before you go what the latest procedures and tests are. My primary care was VERY convincing and adamant that her information was correct and mine was wrong. If I hadn't done my homework I might have believed her.

I'm mostly posting to find out what happened! :)

Megan Rookie

She thinks that their is a very very low chance of me having celiacs...even if having the food does make me feel SOOOOOO much better

but she did the bloodwork anyways

she thinks I have a spastic colon and put me on....LEVBID

I won't get the results frm the blood test for a week and a half...and I'm still feeling like crap every time I eat, it is making my life miserable, but at least I'm on the right track!!

debmidge Rising Star

Oh boy, where have I heard this before? If gluten-free is doing well for you then don't return to old foods.

My husband was misdiagnosed for 27 years with spastic colon, irritable bowel, IBS ....

Good luck and question, question question the doctors if you need to.

schuyler Apprentice

I was also misdiagnosed with many things over the years (spastic colon, IBS, reflux, etc.). I hope that you feel better soon!

Danielle

ravenwoodglass Mentor
She thinks that their is a very very low chance of me having celiacs...even if having the food does make me feel SOOOOOO much better

but she did the bloodwork anyways

she thinks I have a spastic colon and put me on....LEVBID

I won't get the results frm the blood test for a week and a half...and I'm still feeling like crap every time I eat, it is making my life miserable, but at least I'm on the right track!!

I hope your on the gluten free diet now and not waiting for the test results, the tests miss a lot of us. You may not need the meds if the diet works. Some of us get relief from symptoms within days. And releif from symptoms is the true test


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



Celiac.com Sponsor (A8-M):



shayesmom Rookie
She thinks that their is a very very low chance of me having celiacs...even if having the food does make me feel SOOOOOO much better

but she did the bloodwork anyways

she thinks I have a spastic colon and put me on....LEVBID

I won't get the results frm the blood test for a week and a half...and I'm still feeling like crap every time I eat, it is making my life miserable, but at least I'm on the right track!!

This is just part of an article by Kenneth Fine, M.D. that truly hit a chord with me. You see, my "symptoms" were NOTHING compared to what most people here have gone through. Just seemingly random incidents of D and chronically being tired or depressed (I blamed it on stress at work). I have never been biopsied nor have I felt the need to see a doctor. I just haven't felt THAT bad as yet. But when my dd showed symptoms and then my aunt was diagnosed via biopsy, I figured, why the heck wait and see if I get the full-blown version??? With my dd being gluten-free, I went gluten-light (because I was too tired to deal with separate meals for everyone). I began having energy and having less of my "random" D incidents. A little over a month ago, I decided that I wasn't going to wait around any more and just try being strictly gluten-free to see if I really had an issue too. Turns out, I DO have a problem with gluten. And I am happy that I went gluten-free without waiting for a doctor's permission to do it. I figure I may have saved myself YEARS of suffering by just listening to what my body was telling me.

Unfortunately, the tests (and some doctors) used to diagnose Celiac are archaic and unreliable. There is a huge amount of subtlety to Celiac where the symptoms are continually being re-defined. And even if Celiacs is relatively "rare"....gluten sensitivity is not. So maybe the small bowel isn't being attacked by the immune system. Instead, maybe it's the pancreas (as in diabetes), or the liver (lupus), myelin sheaths (MS), joints (rheumatoid arthritis), brain (autism, schizophrenia, depression)......ALL are related to gluten sensitivity. And I have seen ALL of them improve with a gluten-free diet at the heart of dietary treatment.

I am not trying to be critical of your decisions for obtaining a formal diagnosis, but rather, I hope that if at any point the tests aren't working out, you are able to say, "enough is enough" and trust in yourself to find solutions that work for YOU. Don't let someone else to tell you how you are feeling when in your heart, you know differently. No one knows what you are feeling and experiencing more than you. And THAT is the most valid point of all.

So here's that excerpt from Dr. Fine.

"I am here to report on a scientific paradigm shift regarding early diagnosis of gluten sensitivity based on about 30 years of medical research by myself and others. My message is that earlier and more inclusive diagnosis of gluten sensitivity than has been allowed by blood tests and intestinal biopsies must be developed to prevent the nutritional and immune consequences of long-standing gluten sensitivity. Imagine going to a cardiologist because your blood pressure is high or you're having chest pain, and the doctor says he is going to do a biopsy of your heart to see what is wrong. If it all looks 'O.K.', you are told you have no problem and no treatment is prescribed because you have not yet had a heart attack showing on the biopsy. You would not think very highly of the doctor utilizing this approach because, after all, isn't it damage to the heart that you would want to prevent? But for the intestine and gluten sensitivity, current practice embraces this fallacious idea that until an intestinal biopsy shows structural damage, no diagnosis or therapeutic intervention is offered. This has to change now because with newly developed diagnostic tests, we can diagnose the problem before the end stage tissue damage has occurred, that is before the villi are gone, with the idea of preventing all the nutritional and immune consequences that go with it."

The article in its entirety can be found at: Open Original Shared Link

Archived

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

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

      Seeking advice on potential gluten challenge

    2. - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    3. - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

    4. - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

    5. - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Blood Test for Celiac wheat type matters?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,139
    • Most Online (within 30 mins)
      7,748

    kathleen apodaca
    Newest Member
    kathleen apodaca
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
    • Jmartes71
      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • 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.