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

Feel like my world is upside down

gatewaytobeing

Recommended Posts

gatewaytobeing Rookie
gatewaytobeing
Posted

I'm 48, have had a lifetime of health problems, a long list of diagnoses (including degenerative osteoarthritis, early osteoporosis including a broken hip at age 26, fibromyalgia (if that's real), hashimoto's thyroiditis, thyroid nodules - 1 of them over 1" large and recently biopsied and genetic tested with a result of 40% chance of cancer - , years of severe period problems with flooding, anemia, huge ovarian cysts, finally culminating in a total hysterectomy 3 years ago which also diagnosed stage 4 endometriosis, and the list goes on. I have SUSPECTED gluten off and on, among other things, but gluten most of all. I don't have a lot of the classic intestinal issues, although I do get random bouts of nausea and have daily constipation from my meds for chronic pain. ETC!

Anyway, I had the blood test done twice over the years, celiac panel, and both times negative. Then before my hysterectomy after doing more research and still suspecting gluten, I went gluten free for 8 months (first month was strict and total, but subsequent months involved tiny cheats based on me not being 100% sure the diet was necessary). I felt AMAZING the first 2 weeks and thought I had finally found the answer to everything. But as time went on, not so great anymore and then went back to a normal diet.

So, having suffered some more, I decided to revisit the gluten possibility this month. I went online to EnteroLab and ordered the stool test. I just got the results yesterday and had a Fecal Anti-gliadin IgA of 159 Units (normal is less than 10). My reaction was mixed, but mostly happy and feeling validated. And I thought I'd probably go ahead and enjoy gluten a few more days up to a week before jumping back in 100%, but this morning woke up and realized I just didn't want one more bite - I wanted to be done hurting my body. So I had zero gluten today - day 1. Spent the day researching, writing lists, and then re-finding this group that I have not been a part of since 2009.

I made a post about my lab results, and got only one response - basically saying that the EnteroLab test is crap. Now I feel like my world is upside down and I'm so frustrated I'm about to cry. Very depressed. I could really use some support, advice, encouragement...

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

Celiac.com Sponsor (A8-M):


gatewaytobeing Rookie
gatewaytobeing
Posted
  • Author

Oops, forgot to green light the reply notification bar. Guess you have to post again to do that? Got it now.

kareng Grand Master
kareng
Posted

I am not trying to make you feel bad.  I just want you to have the facts, from a reliable source.  I, also, don't want you to miss something that might be your issue.  I believe I suggested you might check on FODMAPS, if you are negative for Celiac.  If that is your problem, it's a lot less restrictive gluten-free diet than Celiacs must follow.    I gave you a link to just one section of the Celiac Center at the Univ of Chicago.  You might want to look around that site as they have lots of good info.

cyclinglady Grand Master
cyclinglady
Posted

Wow!  You have been through the wringer like so many of us!  Has your anemia resolved?  Has the osteoporosis improved at all?  You would think that your doctor would try to get to the bottom of your health issues.  

My anemia was blamed on my fibroids and perimenopause, plus I have a genetic anemia.  Still have the Thals, but my iron-defcient anemia was really caused by celiac disease.  My GYN pushed for surgery, but my GP disagreed.  He found the Thals and later, my GI found the iron-deficient anemia when I went for a routine colonoscopy and I had passed into menopause.  

The good news is that I not longer have thyroid nodules!  Maybe being gluten-free helped or I calmed my body down somehow.  

If you do get tested again for celiac disease, please make sure it is a complete panel and that you have been consuming gluten for 8 to 12 weeks daily.

So, you have a choice to make.  You know what is best for you.  We really don't know your situation.  We are here to help!  :D

Vitaminman Newbie
Vitaminman
Posted

Had vomiting issues with arthritis , stomach issues, , ibs. For 30 years. Lots of fatigue and pain all over. I quit eating wheat, took serrazimes. (Protelitic enzymes) these digest undigested proteins called ( fibrin, scar tissue)..

all symptoms went away. Anyone with these symptoms should at least invelestigate what I have done. Light a small candle, you will get some light

Vitaminman Newbie
Vitaminman
Posted
20 hours ago, gatewaytobeing said:

I'm 48, have had a lifetime of health problems, a long list of diagnoses (including degenerative osteoarthritis, early osteoporosis including a broken hip at age 26, fibromyalgia (if that's real), hashimoto's thyroiditis, thyroid nodules - 1 of them over 1" large and recently biopsied and genetic tested with a result of 40% chance of cancer - , years of severe period problems with flooding, anemia, huge ovarian cysts, finally culminating in a total hysterectomy 3 years ago which also diagnosed stage 4 endometriosis, and the list goes on. I have SUSPECTED gluten off and on, among other things, but gluten most of all. I don't have a lot of the classic intestinal issues, although I do get random bouts of nausea and have daily constipation from my meds for chronic pain. ETC!

Anyway, I had the blood test done twice over the years, celiac panel, and both times negative. Then before my hysterectomy after doing more research and still suspecting gluten, I went gluten free for 8 months (first month was strict and total, but subsequent months involved tiny cheats based on me not being 100% sure the diet was necessary). I felt AMAZING the first 2 weeks and thought I had finally found the answer to everything. But as time went on, not so great anymore and then went back to a normal diet.

So, having suffered some more, I decided to revisit the gluten possibility this month. I went online to EnteroLab and ordered the stool test. I just got the results yesterday and had a Fecal Anti-gliadin IgA of 159 Units (normal is less than 10). My reaction was mixed, but mostly happy and feeling validated. And I thought I'd probably go ahead and enjoy gluten a few more days up to a week before jumping back in 100%, but this morning woke up and realized I just didn't want one more bite - I wanted to be done hurting my body. So I had zero gluten today - day 1. Spent the day researching, writing lists, and then re-finding this group that I have not been a part of since 2009.

I made a post about my lab results, and got only one response - basically saying that the EnteroLab test is crap. Now I feel like my world is upside down and I'm so frustrated I'm about to cry. Very depressed. I could really use some support, advice, encouragement...

I had many symptoms as you. I went gluten free, don't eat any modified food starch, read labels, it usually is made from wheat. Pain, IBS

vomiting was common. All symptoms gone now. Also took serrazymes. Really helped. 

GFinDC Veteran
GFinDC
Posted

Hi Gateway,

Well, I am sure you didn't come back to the forum for no reason.  It seems to me you know somehow that gluten is a problem for you.  Tests or not.  Some people never test positive on the standard antibody tests, but they still have celiac disease.  It's not necessarily an easy condition to diagnose.  If celiac were easy to diagnose, maybe there would be a lot less than 85 to 90 % undiagnosed celiacs walking around.  It doesn't help that some doctors won't test for it either.

You can get the blood antibody tests again, it may show something now.  Or it may not.  But you can still go gluten-free anyway.  Just don't expect everything to be perfect in a few weeks.  It can take months or years to fully recover, depending on age and the amount of damage etc , etc.  Sticking with the gluten-free diet is the only way to get better though, if it is celiac disease.  So you may as well stick with it this time.  Not for 8 or 9 months, but for 3, 4 or more years.  For life if it is celiac.

There is plenty of other food to eat that is nutritious and gluten-free.  Stick with meats, nuts, veggies and fruit and you should be fine.  Try to mix it up some though and not eat the same things all the time.  You may need to stop dairy for a few months also.

Going gluten-free is a great thing for people with celiac, and keep make our lives /heath much better.  It may take some time, but getting healthy again is worth it.

You can do it! :D

 

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

Celiac.com Sponsor (A8-M):


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 Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess...
    2. Roses8721
      - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    3. Roses8721
      - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    4. Scott Adams
      - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    5. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy

      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,474
    • Most Online (within 30 mins)
      7,748
    Silk tha Shocker
    Newest Member
    Silk tha Shocker
    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
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
    • Roses8721
      gluten-free Oatmeal

      By Roses8721 · Posted

      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
×
×
  • 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.