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

Attempt To Get Diagnosis Or Self-Diagnose?

Emsstacey

Recommended Posts

Emsstacey Rookie
Emsstacey
Posted

I have a long, suggestive history of celiac. Lifelong difficulty gaining weight, mouth sores, lactose intolerance, ITP, anemia, family history, and gi symptoms. About 12 years ago had a scope looking for "malabsorption", celiac never mentioned. I don't remember any biopsies taken, the dr just told me afterwards that it looked fine. Fast forward to two years ago, started feeling awful with extreme fatique, body/joint aches, repeated shingles, nonstop mouth sores and osteopenia and extremely low vit d. My dr ran a celiac panel and everything came back negative except for a high deamidated gliadin peptide. I was told that it was not suggestive of celiac but I could see a GI if I really wanted to. I was sick of dr's and opted not to press it.

Now, I wonder every day whether I do in fact have celiac. I have attended a gluten free support group and noone in the group has had good luck with the local dr's. I would like to have an official diagnosis buti have been afraid of wasting my time with dr's who aren't up to date. I have been following the new research on the DGP test and it sounds very accurate and sensitive... Coupled with family history of celiac and many autoimmune diseases and my own suggestive history... It sounds unlikely that I don't have gluten issues.

I would love your opinons on whether I am foolish to self diagnose and forego a formal diagnosis? It seems so often that we have to take our health in our own hands anyways... Why not now?

Thank you!

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

Celiac.com Sponsor (A8-M):


DebbieM Rookie
DebbieM
Posted

I really don't know what to tell you except I am in the same boat. Although, I have seen a GI and had an edoscopy that told me I was "suggestive of mild/early celiac".My blood work was negative, but I did test positive for both the celiac genes on the DNA tests. SO...same here....do I just "self diagnosis" or keep trying for a more firm diagnosis. In my heart of hearts, I KNOW (and have been told by so many) I should just go gluten free and call it a day and I know I eventually will. BUT...I really want to know 100% if I have celiac. I was gluten free for 9mos (then did a 3 month gluten challenge before my test) and I am happy to back to that diet, but if I have celiac I will be so much more diligent and never cheat and I will be more watchful with my children. My doctor did not see "enough" to make an official diagnosis, but rather wants me to continue eating gluten for 3 more months and do the biopsy again. I don't know what to do....

Best of Luck....

Debbie

ciavyn Contributor
ciavyn
Posted

If you do a search on here, you'll find a number of threads on this topic. It's a tough call. I'm self-diagnosed, do not have any biological children, and am an adult. I do not need a doctor's excuse for anything, and my dr's are perfectly content to put gluten-free on my chart. I don't have the money nor the inclination to be sick for 3 months. So that is how I look at it. But it is your choice, and you'll have to decide what it is worth. More than anything, I just want to feel healthy. :)

Emsstacey Rookie
Emsstacey
Posted
  • Author

Thank you for your responses! I guess that I have either learned to live with my main symptoms or they just aren't that bad... that the diet doesn't make a huge difference noticeable. Of course, I have only gone 1 month at best. I do live with a lot of fatigue that I would expect to get better as well as general gas/bloating.

What makes me most worried is that if I have a more silent celiac-- then I am continuing to damage my bones as well as other issues. I was shocked to have mild osteopenia at 30 years old as well as a vitamin d level of 18. I also have had shingles every couple of years and I'm just not sure that if my immune system was not battling something like gluten-- that I would have already been dealing with such things.

Anyways, I think I know my answer, but it's so hard to commit when I don't get a pretty quick "sickness" from what I eat. It would be easier if I ran to the bathroom immediately and knew for sure even without an official diagnosis.

jackay Enthusiast
jackay
Posted

Thank you for your responses! I guess that I have either learned to live with my main symptoms or they just aren't that bad... that the diet doesn't make a huge difference noticeable. Of course, I have only gone 1 month at best. I do live with a lot of fatigue that I would expect to get better as well as general gas/bloating.

I suggest you stick with a gluten free diet longer. I have been completely gluten free for five months now. My anxiety went away as soon as I was careful to not get cross-contaminated. Other issues did not go away until I went on a combined elimination and candida diet. I also started a candida supplement. I still suffer from fatigue and lots of gas. The fatigue is getting better as time goes on. My doctor feels that the gas will go away with more healing and changing the strain of probiotics I use.

Foods other than gluten may be causing your fatigue and gas/bloating, as was my case.

I was diagnosed gluten intolerant but did not have the blood tests for Celiac until after I had eliminated gluten from my diet. There is no way I'd add gluten back just for additional testing. I know what I can and cannot eat and that is enough for me. Although I am a bit older than you, I also had osteopenia and low Vitamin D level. My Vitamin D level is now where it should be with taking supplements. I haven't had a repeat dexa scan yet but I do expect that the osteopenia is getting better since I eliminated gluten.

Emsstacey Rookie
Emsstacey
Posted
  • Author

I wanted to update with a response I received today from Vikki Petersen, author of The Gluten Effect.

I am not very familiar with her but signed up for her virtual book tour after seeing it advertised on the Pamela's facebook page. My question can be viewed here on her blog: www.glutendoctors.blogspot.com. I asked about what to do next after being positive for deamidated gliadin antibody and having my doctor not find it significant. She said that she found it very concerning and that I should have been told that my positive deamidated gliadin is an early marker for celiac and I should have been advised to remove gluten from my diet.

It is very nice to finally have someone give me a direct answer, although... I'd rather hear that I can eat whatever I want and not worry about it. ;) Deep down, I know this is what is best for me. I think at this point, living in a rural area with limited knowledgeable professionals on celiac and gluten intolerance-- I am going to go ahead and cut out gluten without worrying about a diagnosis. I hope that I don't second guess myself again in the future. If so, I will probably pursue genetic testing.

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

      Seeking advice on potential gluten challenge

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

      Seeking advice on potential gluten challenge

      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 ankle...
    3. marzian
      - 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)

      This is very exciting news. The research lends itself to preventing the immune system in other autoimmune disorders from getting out of sorts. As someone with a compendium of autoimmune disorders I feel a bit of hope.
    4. Jmartes71
      - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

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

      Blood Test for Celiac wheat type matters?

      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.
  • 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):

  • Upcoming Events

  • Posts

    • trents
      Seeking advice on potential gluten challenge

      By trents · Posted

      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
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      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
      Medications

      By Jmartes71 · Posted

      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
      Blood Test for Celiac wheat type matters?

      By Scott Adams · Posted

      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
      Airborne Gluten?

      By Jmartes71 · Posted

      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.