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

Blood Type Yes; Biospy No; 12 Monthes Later Symptoms Seem Bit Worse

None

Recommended Posts

None Newbie
None
Posted

Blood type yes; biospy no; 12 monthes later symptoms seem bit worse.

I'm not a hypochondriac; but I've gained 10 lbs which i never do (same, healthy weight more or less since 15); my stomach bloats out recently and i have bad gas and sometimes this overall bad odor to me (my BF doesn't notice it or hasn't said anything).

So I went relatively gluten free for two weeks, not nearly as strict as some people who post on this board. Felt better, belly was flatter, no smell etc. But when they did the biopsy a year ago I just wasn't celiac. I'm diabetic type one and keep good control of things. Honestly-- if u tested Neg. a year ago, with the biospy, by a a well established NYC doctor, could I contract celiac a yr later? I know my blood will always test positive, but I don't have the time to take biospies every yr. or anything? Need straightforwad, honest advice.

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

If your blood test was positive, you have it... plain and simple. Dr's are still reluctant to dx based on blood work alone, but I'm sorry to say that the biopsy is NOT as accurate as the medical community would lead you to believe. It is too easy to miss damaged areas as they can be sporadic, especially if they did not take enough samples. Also, they could have seen early signs of damage, yet refused to dx because currently the majority of the medical community is stuck on the outdated methodology of waiting until the the villi are completely gone before being willing to dx celiac.

My advice to you would be to forget having any more biopsies, they are useless IN MY PERSONAL OPINION, and go ahead and try the diet. How you respond to the diet is way more valid a diagnostic tool than the biopsy.

nikki-uk Enthusiast
nikki-uk
Posted
If your blood test was positive, you have it... plain and simple. Dr's are still reluctant to dx based on blood work alone, but I'm sorry to say that the biopsy is NOT as accurate as the medical community would lead you to believe. It is too easy to miss damaged areas as they can be sporadic, especially if they did not take enough samples. Also, they could have seen early signs of damage, yet refused to dx because currently the majority of the medical community is stuck on the outdated methodology of waiting until the the villi are completely gone before being willing to dx celiac.

Nini just about said it in her comment above.

A once in a lifetime test is not enough to detect celiac disease.It's possible that at the time of your biopsy you was in the early stages of the disease -the damage can also be patchy so it could easily be missed by a biopsy.

If you feel better G.F and don't feel the need for a 'formal' diagnosis then continuing being G.F would be your best option :)

nettiebeads Apprentice
nettiebeads
Posted

Nini and Nikki are right. More up to date drs now don't think of the biopsy as the gold standard for celiac. It takes 10 or more samples (I forget what the current recommendation is exactly) plus a WELL TRAINED lab to read it accurately. Believe it or not, some drs are re-thinking tests and now think that the diet challenge is the best dx, which is how I was dx'd almost a decade ago, before the blood tests and biopsies became the standard. If your body feels better w/o gluten, then don't eat gluten. You'll be saving yourself from lots of misery years from now--read the posts of those who weren't dx in a timely manner - ataxia, neurapathies (I suffered from that one - different story), thyroid problems.... Get the pic?

Take care and keep us posted!

Annette

jerseyangel Proficient
jerseyangel
Posted

I agree with everyone above! I would use your energy to go 100% gluten-free. Come here anytime you have questions about how to de-glutenize your life! :)

aikiducky Apprentice
aikiducky
Posted

Just a thought but could the original poster mean they had a blood test GENE test? That one would always be positive for a celiac gene even if you hadn't developed celiac.

To the original poster: celiac doesn't happen overnight. It developes. :) So yes, it could be that first you have an inconclusive biopsy where nothing much is to be seen, and a few years later, you do show celiac damage in a biopsy. So you could think of having another one. But some people never show much damage in their intestines, and still feel much better on a gluten free diet, so you should keep that in mind as well.

There's also the option of getting (stool) tested by Enterolab, I don't have a lot of info on that though but hopefully someone else will chime in...

Pauliina

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
      133,411
    • 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.