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

gluten-free And Still Have Problems? This Might Help/

Sulevismom

By Sulevismom
in Coping with Celiac Disease

Recommended Posts

Sulevismom Apprentice
Sulevismom
Posted

Hi everyone,

I've know about having celiac disease for almost a year now, and I'm one of those people for who a gluten free diet alone does not seem to work. I was constantly thinking I was getting 'gluttened' by my husband and my son's crumbs, or by some cosmetic that I had not checked. Frustrated, I dedicated a significant amount of time searching. What I found might help many others.

Like many other people with celiac disease, I came to the conclusion that I have a 'leaky gut'. When I was first diagnosed, reading those two words together was repulsive. I did not want to consider that in addition to the realization that I have a disease, I also have significant damage to my intestines.

For all of you out there who think they've tried everything, and are so frustrated because you get 'gluttened' every week or few days, PLEASE pick up the books the Specific Carbohydrate Diet and Gut and Psychology Syndrome. These books go into quite a bit of detail explaining why people with celiac disease and other digestive disorders have permeable intestines and how this is connected to many other ailments.

The diet that these books (and websites-just google them) recommend is to have no grains and no starches (potatoes, yams, etc.), and most importantly, NO SUGAR. After the introductory protocol to this diet is followed, it is basically the same as a paleo/primal diet, which makes sense, because these diets are fashioned after what humans are known to have evolved eating before agriculture only 10,00 years ago. It makes sense that many of us have not evolved to incorporate high carb foods well, especially the overly processed versions of the last 50 years.

I am doing so much better now that I'm following the diet. I can't even begin to describe. I can even brush off the croissant crumbs from my son's shirt with my bare hand without freaking out that I'll get contaminated!

I hope this helps some people. SCD/GAPS, Etc., is a pretty strict diet, but there is tons of online support.

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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,115
    • Most Online (within 30 mins)
      7,748
    Catherine Driscoll
    Newest Member
    Catherine Driscoll
    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

    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      I assume that you already know that genetic testing for celiac disease cannot be used to confirm a celiac diagnosis. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. It can be used to rule out celiac disease with a high degree of confidence, however, in the case where the genetic testing is negative for the genes. Until and unless you are actually diagnosed with celiac disease I would not raise this as an issue with family. However, if you are diagnosed with celiac disease through blood antibody testing and/or endoscopy with positive biopsy I would suggest you encourage first degree relatives to also purse testing because there is a significant chance (somewhere betwee 10% and almost 50%, depending on which studies you reference) that they will also have or will develop active celiac disease. Often, there are symptoms are absent or very minor until damage to the small bowel lining or other body systems becomes significant so be prepared that they may blow you off. We call this "silent celiac disease". 
    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
    • trents
      High DGP-A with normal IGA

      By trents · Posted

      Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      My genetic test results have arrived - I’m homozygous for DQB1*02, meaning I have HLA-DQ2. I’ve read that this is one of the genes most strongly associated with celiac disease, and my symptoms are very clear. I’m relieved that the results finally arrived, as I was getting quite worried since my symptoms have been getting worse. Next step, blood test. What do these results imply? What should I tell my family? I’m concerned that this genetic predisposition might also affect other family members.
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      Two months. In extreme situations like this where it’s clearly a smoking gun? I’m in LA so went to a very big hospital for pcp and gi and nutritionist 
×
×
  • 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.