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So Many Questions


JustMe75

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JustMe75 Enthusiast

Ok, I am new here and still trying to figure this all out. I am 32 and have suffered with stomach problems since I was 12. I was sort of diagnosed with IBS a few years ago and I had my gallbladder removed about 9 years ago. My problems have only gotten worse over the years. After finding this site I made an appointment with my doctor and asked him if I could have celiac disease. He said it is very possible so I asked him to do the blood tests I read about and he said I needed to go to an allergist first. He also said to elliminate grains from my diet for 2 weeks. From what I have read it sounds like grains and gluten are the same(??) So if I stop eating grains will it change the test results, if he decides to give it to me?? Also, I can't figure out what exactly has gluten in it. Is there a list someone has made of common foods you can eat? Will I ever be able to eat out again? What about cereal, are any of the common brands ok to eat? I am very confused. I am a mother of 5 kids and not sure how anyone can actually cook for a family and eat the right foods. I am willing to try anything to feel better, but I don't even know where to begin. I would appreciate any advice!

Thank you


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lovegrov Collaborator

There's a lot here.

If there seems to be a good chance you have celiac, you don't need to go to an allergist. Celiac is not an allergy. You need to see a GI, preferably one who has experience with celiac. There are very specific blood tests you need (not Ige allergy tests) and possibly a biopsy of your small bowel.

You definitely should NOT stop eating wheat, rye or barley before tests as that could skew the results. Other grains are gluten-free.

IF you have celiac, every single first-degree relative also needs to be tested. With five kids, the odds are very high that at least one has or will have celiac. Also siblings and parents. When I was diagnosed my 70-year-old father discovered he has celiac.

You will be able to eat out again and there are many "common" foods that are OK, but you will definitely need to change things in your household. You simply cannot be preparing foods with gluten all the time, and you will need some separate appliances, like toasters. I do prepare some foods with gluten myself, but dinners in particular are often gluten-free. That doesn't mean my wife and son suffer, as we eat meats, vegetables, fruits, rice, potatoes, etc.

good luck

richard

kbtoyssni Contributor
From what I have read it sounds like grains and gluten are the same(??) So if I stop eating grains will it change the test results, if he decides to give it to me?? Also, I can't figure out what exactly has gluten in it. Is there a list someone has made of common foods you can eat? Will I ever be able to eat out again? What about cereal, are any of the common brands ok to eat? I am very confused.

Thank you

Gluten grains are a subset of all grains. You can still eat rice, corn, quinoa, and many other grains.

If you stop eating gluten and then get a blood test or scope for celiac, it will likely be negative because your body will stop producing antibodies and start healing. So if you ARE going to get tested, keeping eating gluten.

Check out the FAQ section on here - there's a list of things you can and cannot eat.

Yes, you will be able to eat out again. Many chain restaurants now have gluten-free menus and you can find gluten-free food at most other restaurants if you know what to ask for. It may take a few months before you feel comfortable eating out again, but you will be able to. Thai (rice based noodles), mexican (corn based tortillas) and Indian food are especially good. And "American" style can be ok if you get grilled chicken and veggies.

I know there's one or two mainstream cereals that are ok - hopefully someone else will post about those. Mainstream Rice Krispies and Corn Flakes are NOT ok - the contain barely malt.

For now I'd start reading posts. You'll find a ton of info about which brands are safe and which aren't. And feel free to ask anything - we're here to help. Ok, I have to run so that's it for now!

Ursa Major Collaborator

Why won't your GP order the Celiac panel blood test himself? That is usually the first step, and then, if you feel it necessary, you see a GI to have the endoscopy and biopsy to confirm celiac disease. Allergists have nothing to do with it, which just shows your doctor's ignorance on the matter. And you definitely don't want to start eating gluten-free before tests, or you will end up with a false negative.

You may need to do some research and educate your doctor, or find a doctor who understands celiac disease. And beware, strangely, there are plenty of GIs who don't have a clue about celiac disease, either!

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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.
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