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Newbie Cd Questions


GinaMarie

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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


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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

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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