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JBaby

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JBaby Enthusiast

Based on 3 week diet experiment, my several visits to her over 2 yrs with no answers vs symptoms that came back when off diet, she feels I have celiac disease. We did blood work anyway(celiac panel). Told me they may come back negative but that doesnt mean I dont have it, just means tests are not conclusive. Advised me to get a nutritionist to help me stay on diet.... which is incredibly hard to stay on diet.


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zeta-lilly Apprentice

I'm sorry that you're having such a hard time! Look on the bright side, it could be much much worse! I'm allergic to close to 30 foods. My diet is so limited. Q-doba is a great place to get gluten free food. Wendy's chili and baked potatoes are also gluten free. You can make gluten free tacos at home. There are some decent gluten free breads out there. If you slather butter on them and grill them in a pan, you won't be able to tell much difference between a gluten free grilled cheese and a regular one. Van's waffles taste pretty close to regular waffles. Rice and corn chex are both gluten free. Amy's mac and cheese is exceptionally good. It's hard to get started because it's a change in your mind set, but I don't think it's that bad once you get used to it.

Amyleigh0007 Enthusiast

It sounds like your doctor is really on top of it. That's good. You are lucky. My main motivation to stay on the diet is my son. I must be a good example for him. It also helps me to think about how I will feel the next day if I consume gluten. I can't leave the house due to restroom issues and fatigue. Gluten just isn't worth it to me. What are your symptoms? If they are bad, that could be your motivation to stay on the diet. Also, family and friends will take your diagnosis more seriously if you don't cheat. It really isn't incredibly hard to stay on the diet. It gets easier. Good luck!

hez Enthusiast

I have two very strong reasons to stay on the gluten-free diet. My children and pain! I get very sick from cross contamination let alone a huge chunk of gluten. I stay sick for about 4 weeks. By the fourth week I am starting to feel better. Is eating gluten worth a month of my life? No. Plus there is a strong chance my kids will someday have celiac. I need to be the example, show them that my life is rich and full without gluten.

Find what motivates you and realize your health and life are worth a gluten-free diet.

Hez

ang1e0251 Contributor

It will help you to get into the mindset if you start very simply with your diet. Eat whole foods that you prepare yourself for awhile and let yourself adjust to shopping, cooking and eating in this simple way. When you feel you have it mastered, then add new foods one at a time every few days. That way you won't be overwhelmed in the market or the kitchen and you can plan ahead easily. When you are past the simple beginning stage and ready to add new foods, sit and write down the 10 most common meals you prepare. Then convert them to gluten-free. If this seems hard, come here for advice. Many of us have become a whiz at converting recipes and substituting.

It will get easier, I promise. It seems daunting to change the way you look at food but it is doable and the great benefit is the healthy way you will feel. It's no fun to live so sick that you can't remember what normal feels like!

tarnalberry Community Regular

It seems silly, but one thing that will make the gluten-free diet easier is not paying a whole lot of attention to those who think the diet is really hard. It's not hard, but it's a big, huge, gigantic *difference*. So, I would argue that it's not the diet that's hard, it's the change. If you just try to twist your current foods to not have gluten, but not otherwise change, you may find yourself frustrated. But, if you're willing to take a little more license with your notion of what makes a meal, then it can be easier.

For instance - sandwiches are made on bread, right? Yeah, but gluten free bread is expensive, and it takes a lot of trial and error to find one (store bought or homemade) that you like, so you get frustrated, "I can't have sandwiches!". Well, what if you don't use bread for a sandwich. Corn tortilla? Rice cake? Lettuce leaf? (And those are just ones I've done, there are all kinds of options out there.) It's a lot about creativity and a positive attitude towards unrestricting what labels are for food in the mind.

Of course, there is definitely a steep learning curve to the technical side. What ingredients indicate gluten? What companies label gluten ingredients? What ingredients do I have to call for? (Here's a hint - the less things you buy with ingredients, the less you have to ask these questions. ;) ) (Ooo... I think the heat wave is making me snarky... :P) Know that you'll make mistakes - we all do. Know that you'll make mistakes even after you think you're over the hump - we all do. But know that you *can*, with a lot of patience and practice, learn the nitty gritty details and minimize those mistakes.

LDJofDenver Apprentice

I agree with tarnalberry, it's really not all that hard.

The hardest thing is that gluten can be in things you'd just never suspect, like soy sauce, spices, licorice, ice cream. That and eating out.

It's a little bit of a learning curve at first, but within a couple months you'll have it down.

A couple months after my diagnosis I found these grocery guides and, man, they made a big difference.

They list mainstream products (Kraft, Heinz, Kroger, Hormel, etc.) by category (soups, chips, dressings, spaghetti sauce, etc.)

Gluten-Free Grocery Shopping Guides:

Open Original Shared Link

Open Original Shared Link

About $25 but sooooooooo worth it.

My only other tip is be aware that


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    • 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.
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      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
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