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

So here's my story...any help greatly appreciated

Laura.D

By Laura.D
in Related Issues & Disorders

Recommended Posts

cyclinglady Grand Master
cyclinglady
Posted
5 minutes ago, ironictruth said:

"I was fine and then I wasn't".

Yup! 

I agree with cycling lady. Go get it checked. It may not go up after a few glutenings but have the old glidian tests done too. I never did. I  guess they are not reliable for diagnosis but good at measuring adherence to the diet. I read a bunch of articles on vagus nerve and celiac disease. I never had issues like this until I started my gluten challenge either. I was convinced they could not be related I'm still not a hundred percent sure. But it is the only thing that makes sense at this point. Keep following up with doctors if anything gets worse so that you don't automatically assume it's gluten. But just know that it can cause some wacky stuff, my brother is a confirmed Celiac and he had all sorts of issues. most of the doc's do not recognize this they just think that you should have abdominal issues only.

Researchers are not recommending the old Gliadin tests anymore because they have been replaced by the DGP tests.  The OP should request those.   The DGP tests are better for determining dietary compliance and can be just as good at making an initial celiac disease diagnosis.  

Open Original Shared Link

Open Original Shared Link

I am not trying to be a know-it-all, but I'm posting this to help future celiac members! :)

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

Celiac.com Sponsor (A8-M):


Laura.D Newbie
Laura.D
Posted
  • Author

Oh you're not being a know-it-all at all! I really appreciate you sharing your expertise! :)

cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, Laura.D said:

I actually had the celiac panel run last July and then also the colonoscopy/endoscopy, and was told it all came back negative, and since the doctors are all in the same health system around here, they don't seem to think they should run them again. Last week I did drive further away to a new health system though, so maybe they would redo the tests. 

So what?  That means you were gluten-free compliant and your celiac disease was not active (remission) last July.  Anything could have happened since then (and it obviously has).  Please find a celiac-savvy GI and keep every single record and document like crazy.  

Obviously your GI doctor is not following the standard level of care for celiac disease as recommended by the American College of Gastroentrology Association (same in Great Britain):

Open Original Shared Link

Print this off and take it to your doctor (if you choose to go back).  Be sure to send him a separate letter or email asking him why when you are so ill, does he refuse to order another celiac panel to determine is your celiac disease is active again.   Also, please take someone with you on your doctor visits.  It helps when you have someone taking "notes".  You can be too sick to ask all the right questions.  

Gemini Experienced
Gemini
Posted
10 minutes ago, cyclinglady said:

Researchers are not recommending the old Gliadin tests anymore because they have been replaced by the DGP tests.  The OP should request those.   The DGP tests are better for determining dietary compliance and can be just as good at making an initial celiac disease diagnosis.  

Open Original Shared Link

Open Original Shared Link

I am not trying to be a know-it-all, but I'm posting this to help future celiac members! :)

The older version of the DGP, the AGA or anti-gliadin antibody tests are fairly useful for both diagnosis and monitoring dietary compliance.  I know the DGP claims it is more sensitive but when I do repeat antibody testing every couple of years, I use Genova Labs because they were the labs where my blood work was done for diagnosis.  For the consistency thing and all.  What surprised me was that there was only a slight difference between the results for both.  I mean, like 1-2 points of difference, which is not much at all.  I  think you could really use either test for diagnosis or compliance but Genova uses both tests, which I found interesting and more unusual.  Maybe it catches more Celiac in people that way?

I think doctors need to be more consistent with Celiac testing and not do what they do with thyroid testing.....only using one test out of the panel.  They also need to stop using the tTg for dietary compliance!

Laura.D Newbie
Laura.D
Posted
  • Author

Just to clarify, I never went back to that same doc after he acted like he didn't take my Celiac seriously, After he did the procedure and told me I was fine I decided not to go back, so it's not that he's outright refused to do it again, it's just that he was sure I didn't have Celiac Disease in his mind all along, so I just decided he wasn't going to be helpful. I started going to a new GI doc and he is in the same health system, I've only seen him once so far, and since he works in the same health system as the former doctor, he was just going off the previous doc's records and results instead of running new tests - but I haven't asked him to yet either. He mentioned at my visit that the only way to get accurate results would be to have me eat gluten for a month, which would probably make me pretty sick. I'm going to make a new appointment with him because he seemed to be the most helpful so far. 

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. Wheatwacked
      - Wheatwacked replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      22

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      That is the goal, after all.
    2. Wheatwacked
      - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine. Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years. Doctor recently said to not stop. My 25(OH)D is around 2...
    3. Known1
      - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Thank you for sharing your thoughts. I respectfully disagree. You cherry picked a small section from the page. I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on ...
    4. Wheatwacked
      - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

      Here is a link to the spreadsheet I kept to track my nutrition intakes. Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/...
    5. Wheatwacked
      - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

      Hello @catnapt, That's so true. Every person with Celiac Disease has different symptoms. There are over 200 that it mimics. Too many still believe that it is only a childhood disease you outgrow. Or it's psychosomatic or simply a fad. Idiots. It's easy to get angry at all of them. You just have to pick at the answers until you find...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,414
    • Most Online (within 30 mins)
      7,748
    EBeloved
    Newest Member
    EBeloved
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Wheatwacked
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Wheatwacked · Posted

      That is the goal, after all.  
    • Wheatwacked
      Blood results

      By Wheatwacked · Posted

      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By Known1 · Posted

      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By Wheatwacked · Posted

      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • 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.