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

Newbie Cd Questions


GinaMarie

Recommended Posts

GinaMarie Newbie

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

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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,027
    • Most Online (within 30 mins)
      7,748

    toyatang
    Newest Member
    toyatang
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @Karmmacalling I'm very sorry to hear you are feeling so unwell.  Can you tell us exactly what sort of pain you are experiencing and where the pain is?  Is it your lower abdomen, upper abdomen etc?  Do you have any other symptoms? Cristiana
    • trents
      The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a strict gluten-free diet, the symptoms do not remit. These cases may be refractory celiac disease or due to gluten contamination; however, the lack of response could be related to other dietary ingredients, such as maize, which is one of the most common alternatives to wheat used in the gluten-free diet. In some celiac disease patients, as a rare event, peptides from maize prolamins could induce a celiac-like immune response by similar or alternative pathogenic mechanisms to those used by wheat gluten peptides. This is supported by several shared features between wheat and maize prolamins and by some experimental results. Given that gluten peptides induce an immune response of the intestinal mucosa both in vivo and in vitro, peptides from maize prolamins could also be tested to determine whether they also induce a cellular immune response. Hypothetically, maize prolamins could be harmful for a very limited subgroup of celiac disease patients, especially those that are non-responsive, and if it is confirmed, they should follow, in addition to a gluten-free, a maize-free diet." Notice that those for whom it is suggested to follow a maize-free diet are a "very limited subgroup of celiac disease patients". Please don't try to make your own experience normative for the entire celiac community.  Notice also that the last part of the concluding sentence in the paragraph does not equate a gluten-free diet with a maize-free diet, it actually puts them in juxtaposition to one another. In other words, they are different but for a "limited subgroup of celiac disease patients" they produce the same or a similar reaction. You refer to celiac reactions to cereal grain prolamins as "allergic" reactions and "food sensitivity". For instance, you say, "NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing" and "IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. I need to remind you that celiac disease is not an allergy, it is an autoimmune disorder. Neither allergy testing nor food sensitivity testing can be used to diagnose celiac disease. Allergy testing and food sensitivity testing cannot detect the antibodies produced by celiac disease in reaction to gluten ingestion.  You say of me, "You must be one of those who are only gluten intolerant . . ." Gluten intolerance is synonymous with celiac disease. You must be referring to gluten sensitivity or NCGS (Non Celiac Gluten Sensitivity). Actually, I have been officially diagnosed with celiac disease both by blood antibody testing and by endoscopy/positive biopsy. Reacting to all cereal grain prolamins does not define celiac disease. If you are intent on teaching the truth, please get it straight first.
    • Bebygirl01
      Perhaps you would still like to answer the questions I posed on this topic, because that is all I asked. I am curious to know the answers to those questions, I do not care about the background of Dr. Osborne as I am more aware of the situation than you are, and he is also one of the best known authors out there on Celiac disease. But did you even bother to read the three Research Papers I posted by NIH? You must be one of those who are only gluten intolerant and not yet reacting to all glutens aka grains, but I AM one of those who react to ALL the glutens, and again, that is one of the two questions I originally posted on this matter. NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing. I started with the failed FDA explanation of what Gluten Free is and I stayed sick and got even sicker. It wasn't until I came across NIH's papers and went off all grains that I realized that in fact, I am Celiac and reacting to all the glutens. IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. Those who are just getting started with learning about grains etc., can take it easy by just being "grain free' and eating a lot of meat, vegetables, etc. or whole foods as God has intended, without buying so called gluten free garbage out there that is making them sick and the whole reason they are not better. I tried the stupid gluten free garbage and it didn't work, and that will make anyone want to give up, it is better to teach the entire truth and let the patient decide, rather than give them misinformation and lies.
    • Nicola McGuire
      Thank you so much I will speak to the doctor for dietician apt . Thank you for your advice Beth much appreciated 
    • Scott Adams
      Oh no, I'm sorry to hear about the accidental gluten! This article, and the comments below it, may be helpful:    
×
×
  • Create New...