kbtoyssni

Awesome! Congrats!

Yay! I'm glad you figured out what was wrong and that it's easily treatable. Make sure you take some probiotics after your antibiotics are gone.

From what I've read, the protein in oats is similar enough to wheat gluten that some celiacs will react, but some won't. And that's not just feeling sick, it's that some do get damage and some don't. I choose not to eat oats (I haven't actually tested myself), but some do successfully. The problem is that most oats are contaminated - manufactured on the same equipment as wheat so you have to make sure they are labeled gluten-free. Part of the reason why I've never tried oats is because all the mainstream ones will be contaminated so I can't eat granola bars, etc. It would just be me buying oatmeal to make hot cereal and I never liked hot oatmeal before diagnosis so I see no reason to start eating it now!

I think if I wanted to eat oats, I'd wait 3-6 months after diagnosis to make sure I'm completely healed and then do an oat challenge. If you keep eating oats right after diagnosis and you are one who reacts, you'll never heal and will probably have trouble knowing if it's the oats or if you're just a slow healer.

I think Stax are made on a dedicated line so those shouldn't have any contamination issues. The other products I know don't have their own line, but I can't remember if it's a shared line or just a line in close proximity.

That's fantastic, Ursa! I'm so happy you finally found a doc who could steer you in the right direction.

While the biopsy is considered the gold standard in the medical world, I feel a bloodtest or dietary response is a perfectly valid diagnosis. There's several things to consider here:

-Do you need a biopsy to commit to putting her on a gluten-free diet? Some need that final bit of proof to fully commit.

-Would you still keep her gluten-free if the biopsy comes back negative? Biopsies are tricky since you have no guarantee that the doc will biopsy damaged areas and you have no guarantee that your very young daughter has been eating gluten for long enough for have a lot of damage (which is a good thing!)

-Are you willing to have a positive diagnosis on her medical records? Some say this makes it easier when she gets to school if you want to do a 504 plan (although I'm not up on the details of all this and even if you don't have a 504 you can still give gluten-free instructions to teachers). This also means that it might be harder to get health insurance later in life if she's not covered by an employer (although I think this is silly because a diagnosed celiac on a gluten-free diet is going to be much healthier than an undiagnosed celiac eating gluten but that's a whole different topic).

-If the doctor suspects something in addition to celiac, a biopsy might be recommended, although that doesn't sound like the case here.

A side note:

-Do you have a good GP? If you have one that won't give you the evil eye every time you mention she's diagnosed through blood test or diet then I think you're fine. I don't think you need to keep seeing a GI after diagnosis so your GP is most important here.

I'm also concerned about the blood. If it's more like dried blood, you've probably got some internal bleeding and you should go to a doctor now. Even if it's not your own. It may not be celiac related at all.

My bet would actually be the Cheetos. Did you eat them within 3 days of this episode? Gluten can be a delayed reaction, for me it is a 3 day lag for tummy troubles. Cheetos have gotten me more than once, not everytime but often enough for me not to eat them again. CC issues are high with some companies and in my personal experience Frito Lay products are too risky to chance anymore. I have been got just too many times.

Do they make Cheetos on a shared line or just in the same facility as wheat products? I've never had problems with any Frito-Lay product and I do like the occasional Cheeto so I'm just trying to weigh my risks here.

In this thread, Emily Elizabeth says that the book "Celiac Disease: A Hidden Epidemic" states you have to be eating 4 servings of gluten for 2 months which is probably a better reference than my memory

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I've heard it's more like 5-6 weeks of eating around 4 servings of gluten a day to get a positive test. I did a two week elimination diet that included wheat (so I was certainly eating some gluten), then ate gluten for about a week to do a blood test and it came back negative.

Just out of curiosity - why do they recommend seeing a dietitian every year? (And I am assuming they mean a celiac-knowledgeable dietitian which can be hard to find!) It seems to me that if you continue reading food labels and calling companies, a dietitian wouldn't have any additional information for you. They may be able to help make sure you're getting proper amounts of nutrients, but that's really something everyone should be doing, not just celiacs.

I'd definitely replace wooden cutting boards and spoons. The plastic ones may be ok if they're not too scratched up.

If the blood test is positive, then he has celiac. There is no reason to do a biopsy unless there's something in addition to celiac that the doctor wants to look for. Many in the medical community consider a biopsy the "gold standard" of diagnosis, but you really don't need one if you have positive bloodwork. And a biopsy can often come back negative, too, especially in young children who haven't had enough time eating gluten to develop lots of intestinal damage (which is a good thing!). At this point you have a choice to make: keep him on gluten and wait for the biopsy or go gluten free now and start the healing process. Some people need the biopsy and its additional proof that he/she has celiac in order to 100% commit to a gluten free diet. If you're someone who is satisfied with the proof you already have, then I see no reason for a biopsy.

It's too bad it's your family doing this, because it's a little harder to cut them out of your life than friends. Do you ever bring yummy gluten-free food to share at family events? I know this probably isn't going to work with people like this, but I like to show everyone how yummy and normal my food is. I make gluten-free cakes all the time and bring them to work. About 30 seconds after I send out the email I've got a line of people waiting for a piece.

Seriously, though, you don't need this kind of negative influence in your life. I'd tell them to stop it and if it doesn't, stop hanging around at meal time.

At first the diet will seem more expensive because you're trying to buy gluten free substitutes for all your old gluten food. Going gluten-free takes some thinking outside the box if you want it to be cheap. Know your mainstream brands and which ones are safe so you don't have to buy the stuff with the "gluten-free" label on the front. I'm a huge shopper of sales - I'll buy 10 cans of beans at a time if they're on sale.

Corn tortillas (the mexican ones are $2 for 36) are a great substitute for things like bread. Or I do egg/tuna salad lettuce wraps. For crackers I often use corn chips.

Check out a local asian food store - they will have cheaper Thai-style rice noodles and rice flour. I can get rice flour for $2 for 4lbs - much cheaper than Bob's Red Mill!

For lunch I do baked potatoes or rice with cheese and salsa instead of sandwiches.

Cereal is a bit of a problem, but I've started eating more scrambled eggs (eggs are cheap!) or eating non-traditional breakfast food like fruit or soup or leftovers from last night.

I love tacos - you can make taco meat (or I make a bean salsa) for cheap and top it with your veggies or make a big batch of chili.

I have tried the New Grist Beer, and Redbridge. I like Redbridge better. It's pretty good.

I have never seen gluten-free beer in a Can. I think bottles are easier for smaller runs/batches/production.

That's funny - I like New Grist better!

It's very possible. This disease is full of false negatives. It also takes a while to develop villi damage so she may not be old enough for it to show up. Or the doctor might not have gotten a biopsy of the damaged area.

I had a negative blood test so I'm diagnosed by dietary response. Try the diet - you'll know if she has it soon enough.

I didn't read the whole thread, but I agree that IBS is just a label for symptoms and not a treatment for a disease. Every health problem is caused by something, and an IBS diagnosis means you hasn't found the cause of your digestive problems yet.

Eating on gluten-free meal probably won't make you feel all better. It's going to take days, or even a few months, of continuous gluten-free eating to feel well. If you do have celiac, your gut's damaged so anything you eat can irritate until it heals. Plus, cross contamination is so easy to overlook, that it's unlikely that your first try at gluten-free was truly gluten-free (I know mine wasn't!).

Sounds like you have celiac! And being mostly gluten-free isn't going to resolve your symptoms - you have to be 100% gluten-free. I was also diagnosed with fibromyalgia before celiac and all my FMS symtoms went away when I went gluten-free. I think it took me 2-3 weeks to realize that my muscles and joints didn't hurt as much as they used to and probably 3 months for my symptoms to go away entirely. I'd also lost a lot of strength from lying in bed all day so it took me maybe 6 months to regain that. Stick with the diet for a few months - I'm sure it will help you feel better.

I'm also someone who is extremely positive about the diet. I never look at it as "my life is so much different now, I hate it." It's more of a "yay, I'm not sick, and gluten-free is just what I do." I've figured out the brands, I've got fantastically supportive family and friends, and I love the way my life is now!

Good point, Mistresslsis. Aren't you supposed to be washing hands in a medical environment? What if a patient was celiac? (Not to say that a patient's health is more important than yours, but a patient does have suing-power). Might be something to bring up to a supervisor - just a friendly reminder to wash the hands after eating...

I've also called Bob's and gotten the same response. This is why their soy flour does not have the gluten-free logo on it, even though it appears to be gluten-free based on the ingredients. I used to just buy BRM products without looking at the packaging too closely, so I made this mistake.

I don't see any reason to waste another 2+ weeks of your life just for a doctor. It sounds like you're perfectly convinced it's gluten and don't need another medical diagnosis to make you stop eating it. You do not need a doctor's permission to stay gluten-free.

About one week of stomach pain.

Followed by one week of joint/muscle pain and brain fog.

Followed by another week of depression.

Welcome and congrats on the diagnosis!