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

No Official Diagnosis, But....

albauer94

Recommended Posts

albauer94 Apprentice
albauer94
Posted

I have had problems most of my life that I now know are symptoms of celiac (IBS, GERD, mouth ulcers, headaches, mystery rashes, infertility, miscarriages, I could keep going but I'll stop).  Anyhow in February I saw a chiropractor/nutritionist because I was totally exhausted and just all around felt like crap.  He suspected it was gut related and ran a organic acid urine test and a celiac HLA DQ screen to check to see if I had the markers because my 13 year old nephew has celiac.  The test came back that I had the DQ8 allele.  He recommended that I start start a gluten free diet at the beginning of March to see if it helps any.  

 

March came and went and I felt much better.  Stomach issues getting better, no brain fog, and I wasn't nearly as exhausted as before.  On April 1 blood test results for my 3 year old son came back positive for celiac.  I resumed a gluten filled diet and called my PCP and requested celiac testing.  Test results were negative but the some of the tests they used were outdated and they only ran IgA, not IgG and didn't test total IgA so I'm still not convinced.  A couple weeks later I called my GI doctor (who I should have called to being with) and told them about a stronger family history (son with positive blood (now blood and biopsy), 1 brother with DH but no biopsy, 1 that can't eat gluten without getting sick but never tested, 1 nephew confirmed celiac-we knew about him for 2 years, and 1 nephew with positive blood test) than a year ago when I had a scope to look for an ulcer or any other reasons for constant hunger feelings and heartburn.  He looked for evidence of flattened villi but didn't see anything but didn't do a biopsy.  

 

Now with the stronger family history, DQ8 gene and positive response to a gluten free diet he said that he would do another scope to do a biopsy but after discussing it with my husband I decided against it, but now I wonder if I have made the right decision or if I should just assume I probably do have it and I'm going gluten free either way so it doesn't matter anyhow.  I have been gluten free for two weeks now after eating anything and everything in April and being sick most of the month.  I don't really want to resume a gluten filled diet just for the sake of a test that wont' make a difference either way.

 

So I guess my question is, are there any benefits to testing as an adult?  Other than knowing you need to stay on a strict diet.  I  don't need a doctor to tell me what I already know. I accidentally glutened myself yesterday eating a chef salad.  Lesson learned, lunch meat isn't always gluten free.

 

 

 

 

 

 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

My husband went gluten-free per the poor advice from my allergist and his GP. He was never tested for celiac disease. Turns out that after being gluten-free For 14 years he feels great! He refuses to do a challenge and I do not blame him. Gluten makes him sick! I was formally diagnosed two years ago. Hubby would be the first to say that I get a lot more support from medical, family and friends. It makes it easier for my kid to be tested as needed. Will it help in in the future? I do not know.

If your doctor could give you the dx by diet, family history and Gene testing, that would be great. If not, then you can be like my hubby and go gluten-free!

albauer94 Apprentice
albauer94
Posted
  • Author

Maybe I will call the GI and make an appointment to talk at the very least.  Maybe he has some compelling reasons to get tested.  At this point, all I really know is eating gluten makes me feel like crap.  The chiropractor I went to pretty much said that regardless of whether I stopped eating now or later, I would most likely develop celiac if I didn't already have it.

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. Rogol72
      - Rogol72 replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying...
    2. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    3. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    4. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    5. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,441
    • Most Online (within 30 mins)
      7,748
    Linda Boxdorfer
    Newest Member
    Linda Boxdorfer
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
×
×
  • 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.