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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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    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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