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

Newbie Cd Questions

GinaMarie

Recommended Posts

GinaMarie Newbie
GinaMarie
Posted

Hi all!

I've been reading the boards for a few weeks now just trying to educate myself. I have had some of the classic celiac disease symptoms for most of my life - I'm 31 now. I was diagnosed with IBS 7 years ago and the symptoms that I've been experiencing have gradually gotten worse over the years. My family dr. has put me on a dairy free diet for the past three weeks and there is a definite improvement in my bowel attacks, but not complete improvement and my other symptoms remain the same. I go back tomorrow and half expect him to put me on the gluten-free diet to see how things go. Is it a good idea to experiment with the gluten-free diet before any bloodwork or other tests are performed?

I understand that many people can have different reactions to the gluten and tolerance levels vary, but I typically do not feel ill after eating gluten and my bowel attacks occur only a few times per week, not every day. Going off the dairy has helped immensely, but I wonder what CAN I actually eat if I'm gluten-free and dairy free too?!

Thanks

Gina

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

Celiac.com Sponsor (A8-M):


gf4life Enthusiast
gf4life
Posted

Hi Gina,

It can be a bit more of a challenge to be gluten-free and dairy free. I have been of dairy for 7 months and off gluten for almost 5 months. There are a lot of foods you can eat, you just have to be aware of all the things to avoid. I highly suggest that you push for the bloodwork before trying the diet and then if it is positive ask for the biopsy as soon as possible, before going gluten-free. It CAN affect the results causing a higher frequency of false negatives if you are gluten free before the blood tests or biopsy.

The things I miss the most are ice cream and cheese, but I am able to get a satisfying and well rounded diet without them. And the good news is that most people outgrow the dairy intolerance after being gluten free and dairy free for a while. The dairy problems is most often caused by the gluten damage in many gluten intolerant individuals. So you may not have to stay dairy free forever.

Also, your symptoms sound a lot like mine did. The bowel problems would come and go. I tended to have bloating and gas most days, but the constipation/diarrhea would come and go. It also was much better being dairy free, even while still on gluten, but not great. I feel much better now. Not perfect yet, but it takes time...

Talk to your doctor about testing you first.

God bless,

Mariann

travelthomas Apprentice
travelthomas
Posted

Hi Gina,

From what you said in your post, I would recommend starting a gluten free life. The longer you put it off the more damage you do, and a lot of the damage can never be reversed. I will live with the pain and discomfort from the damage until the day I die. It would be nice to have a pain free day, but I am beginning to realize that is not going to happen at this point.

I did freak out a bit about the gluten and dairy free life a bit at first, but after living in India, and watching people picking through chicken scraps (bones and feathers) for a meal, I don

GinaMarie Newbie
GinaMarie
Posted
  • Author

Thanks a lot for the encouragement. I did go the dr today and had the bloodwork done, so we'll see in a few weeks what the outcome is. He told me to go ahead and start the diet - I'm a little apprehensive to do so before a biopsy, but I really want to see if it helps. I'm just ready to feel better and I'm hoping this will be the answer. Thanks so much for your advice!

Gina

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,133
    • Most Online (within 30 mins)
      7,748
    Exhausted-momma
    Newest Member
    Exhausted-momma
    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

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.