Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Please Help Me if You Can

Gillianannpansan
 Share

Recommended Posts

Gillianannpansan Newbie
Gillianannpansan
Posted

For 3 months I had severe pains in my stomach and did not know what to do.   In desperation I decided to try eating gluten free.   I still got pain now and again.   I then ate Gluten and lactose free.   I was out of pain at last.

I went to the Doctor hoping to get a diagnosis.   He said the blood tests showed that I am not Celiac provided that I was not eating gluten free,   The problem was that I was eating gluten free when I had the blood test.   

Dr told me that I should now eat gluten because I am not Celiac but stay away from milk containing lactose.

My problem is that I am loath to try eating gluten again as I am a coward and I do not want to be in terrible pain again.   

What should I do next please?

Sincerely

Gillianannpansan

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

Celiac.com Sponsor (A8-M):


Wheatwacked Veteran
Wheatwacked
Posted
(edited)
7 hours ago, Gillianannpansan said:

I decided to try eating gluten free.   I still got pain now and again.   I then ate Gluten and lactose free.   I was out of pain at last.

7 hours ago, Gillianannpansan said:

Dr told me that I should now eat gluten because I am not Celiac but stay away from milk containing lactose.

Stay out of pain. What are the benefits to you of eating gluten?  Your test could be a false negative but the good result is that you are doing better on gluten free.

 

Quote

Wheat is the most important staple crop in temperate zones and is in increasing demand in countries undergoing urbanization and industrialization....Starch from wheat and other cereal grains is the predominant source of human dietary carbohydrate... in wheat, fructans and raffinose are the major components of a group of ... carbohydrates which have been termed FODMAPs... It has been suggested that a low FODMAP diet improves the management of irritable bowel syndrome (IBS) and inflammatory bowel disease (Crohn's disease and ulcerative colitis), by reducing fermentation in the colon    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4998136/

 

Edited by Wheatwacked
trents Grand Master
trents
Posted
(edited)

Welcome to he forum Gillianannpansan.

Do you need an official diagnosis of celiac disease for some reason? Dairy intolerance is very common among people with celiac disease. Sounds like you either have celiac disease or NCGS (Non Celiac Gluten Sensitivity) along with dairy intolerance. Either way, the solution is the same. Avoid gluten and dairy.

Edited by trents
knitty kitty Grand Master
knitty kitty
Posted

@Gillianannpansan,

Welcome to the forum!

Our bodies make antibodies against gluten (and casein the protein in dairy) as long as we are consuming it.  Where we stop consuming gluten, our bodies stop making the antibodies.  

So having a blood test for gluten antibodies after you stopped eating gluten will more than likely be negative.

You could do a Gluten Challenge and eat gluten (and dairy) again for six to eight weeks so your body will make enough antibodies to show up in a blood test.   An unpleasant option.  

Another alternative is to have genetic testing done to see if you have any genes for Celiac.  No gluten challenge needed.  Some doctors will diagnose Celiac based on positive genetic markers and improvement on a gluten free and dairy free diet.  This is how I was diagnosed.  

Hope this helps!

Gillianannpansan Newbie
Gillianannpansan
Posted
  • Author

Dear Knitty Kitty 

I really appreciate you taking the time to try to help me.   Thank you.   I am very grateful.

Gillianannpansan Newbie
Gillianannpansan
Posted
  • Author
14 hours ago, trents said:

Welcome to he forum Gillianannpansan.

Do you need an official diagnosis of celiac disease for some reason? Dairy intolerance is very common among people with celiac disease. Sounds like you either have celiac disease or NCGS (Non Celiac Gluten Sensitivity) along with dairy intolerance. Either way, the solution is the same. Avoid gluten and dairy.

The Dr. said he does not believe it is celiac because my iron levels are high.  I tend to think that it is more likely to be gluten sensitivity.   Is there any way that I can get diagnosed?   Thank you for replying.  I am very grateful.

trents Grand Master
trents
Posted

There are no diagnostic tools for NCGS. Celiac disease must first be ruled out. As you know, we do have diagnostic tools for celiac disease.

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

Celiac.com Sponsor (A8-M):


Gillianannpansan Newbie
Gillianannpansan
Posted
  • Author
1 hour ago, trents said:

There are no diagnostic tools for NCGS. Celiac disease must first be ruled out. As you know, we do have diagnostic tools for celiac disease.

Thank you Trent.   Much appreciated.

knitty kitty Grand Master
knitty kitty
Posted
23 hours ago, Gillianannpansan said:

The Dr. said he does not believe it is celiac because my iron levels are high.  I tend to think that it is more likely to be gluten sensitivity.   Is there any way that I can get diagnosed?   Thank you for replying.  I am very grateful.

The high iron levels could be connected to hemachromatosis.  Perhaps discuss this possibility with your doctor.

Here's an article...

Hope this helps.  

Gillianannpansan Newbie
Gillianannpansan
Posted
  • Author
26 minutes ago, knitty kitty said:

The high iron levels could be connected to hemachromatosis.  Perhaps discuss this possibility with your doctor.

Here's an article...

Hope this helps.  

Thank you.   It is indeed a very interesting article.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,113
    • Most Online (within 30 mins)
      7,748
    ArielGartner
    Newest Member
    ArielGartner
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • StaciField
      My bone structure is disintegrating and I’m having to have my teeth removed

      By StaciField · Posted

      There’s a Cosco in Auckland in New Zealand. It’s a bit away from where I live but it’s worth the travel for me. Very appreciative of your advice.
    • Wheatwacked
      Celiac Maybe a Possibility?

      By Wheatwacked · Posted

      It seems you have proven that you cannot eat gluten.  You've done what your doctors have not been able to do in 40 years. That's your low vitamin D, a common symptom with Celiac Disease.  Zinc is also a common defiency.  Its an antiviral.  that's why zinc gluconate lozenges work against airborne viruses.  Vitamin D and the Immune System+ Toe cramps, I find 250 mg of Thiamine helps.   When I started GFD I counted 19 symptoms going back to childhood that improved with Gluten Free Diet and vitamin D. I still take 10,000 IU a day to maintain 80 ng/ml and get it tested 4 times a year. Highest was 93 ng/ml and that was at end of summer.  Any excess is stored in fat or excreted through bile.   The western diet is deficient in many nutrients including choline and iodine.  Thats why processed foods are fortified.  Celiac Disease causes malabsorption of vitamins and minerals from the small intestine damage.  GFD stops the damage, but you will still have symptoms of deficiency until you get your vitamins repleted to normal.  Try to reduce your omega 6:3 ratio.  The Standard American Diet is 14:1 or greater.  Healthy is 3:1.  Wheat flour is 22:1.  Potatoes are 3:1 while sweet potatoes are 14:1.  So those sweet potatos that everyone says is better than Russet: they are increasing your inflammation levels.   
    • Scott Adams
      Weird Symptoms

      By Scott Adams · Posted

      My mother also has celiac disease, and one of her symptoms for many years before her diagnosis was TMJ. I believe it took her many years on a gluten-free diet before this issue went away.
    • Jeff Platt
      Weird Symptoms

      By Jeff Platt · Posted

      Ear pain and ringing your entire life may or may not be TMJ related but could be something else. A good TMJ exam would be helpful to rule that out as a potential cause from a dentist who treats that. I have teens as well as adults of all ages who suffer from TMJ issues so it’s not a certain age when it shows up.   
    • cristiana
      Weird Symptoms

      By cristiana · Posted

      Not sure if related to coeliac disease but my ear ringing  has stepped up a notch since diagnosis.  Even since a child silence really hurts my ears - there is always a really loud noise if there is no other noise in a quiet room - but my brain has learned to filter it out.  Since diagnosis in my forties I also get a metallic ringing in my ears, sometimes just one, sometimes both.  But it comes and goes.   My sister also suffers now, we are both in our fifties, but she is not a coeliac, so for all I know it could just be an age thing.  I do get occasional stabbing pain in my ears but that has been all my life, and I do appear to be vulnerable to outer ear infections too.  So not a particularly helpful reply here, but I suppose what I am trying to say is it might be related but then again it could just be one of those things.   I think in the UK where I live doctors like you to report if you get tinnitus in just the one ear.  I reported mine but no cause was found.  Most of the time it is nothing but sometimes it can have a cause that can be treated, so perhaps worth reporting to your GP.  
×
×
  • Create New...