kbtoyssni

I have been looking for a gluten free fish food for years. I haven't found one yet. I did find a gluten-free weekend feeder (Tetra brand) but it hardly matters when I'm feeding them gluten everyday.

I'm not in that area, so I can't help with doctor's names. You could see if there's a local celiac support group or ROCK group - they might have some suggestions for you. Unfortunately your experience with a dietitian is a very common one. Most on this board have found that unless you live this everyday, it's impossible to really know everything that contains gluten. And many dietitians have very outdated information (like that you can eat the common brands of rice krispies and corn flakes - not true!) I usually ask all my questions on this board - if it's happening to me, odds are very good that someone else has had the same thing. I feel like I've got to be my own advocate and do my own medical research before I even go to the doctor.

Yes, celiac is often triggered by a trauma to the body - illness, stress, injury, pregnancy, etc.

Doctors are convinced that the blood tests are quite accurate, because that's what the studies show. But if you look at real-world cases- the story is very different. I'm not sure why this is. I believe that something in the method of the studies throws them off.

I wonder if this is because the blood tests are pretty accurate for those with total villi atrophy (i.e. those who would also have a positive scope) because that's the population that the studies could say for sure had celiac. It's the rest of us that haven't reached total villi atrophy that they aren't accurate for.

But pester your g.i. - call every day looking for a cancellation or a day when you can be squeezed in. Explain how bad it is and if they can't fit it in sooner, you'll go somewhere else. When they hear you're that serious, they often will accommodate you. In the end, most of them (despite what it may seem like, I know, no matter how bad they are) actually are in this to help people. It's just that even the best of them get caught up in the routine like the rest of us.

Anther option is to have the referring doctor call the GI to get you in for a scope. I've had waiting time reduced from 2 months to 2 weeks this way.

But I agree with Ursa - is a positive scope really going to make a difference in this situation? This does seem like more of a teenage rebellion than a uncertainty in whether he has the disease. And what will you do if the scope comes back negative (a strong possibility since you've been trying to keep him gluten-free for a while)? I would also recommend setting clear consequences/punishments for him eating gluten while you feed him only gluten-free meals and make sure there are plenty of gluten-free foods for him to snack on when he gets hungry. If there are gluten foods that he tends to cheat on, I'd get those out of the house.

I never use soy flour alone. I do like to use about 2/3 mix of rice flour plus a few other flours plus 1/3 soy flour in things like cake. The soy flour is very smooth and helps even out the more gritty rice flour.

I am registered with the disability office, but as far as I know I'm the only one with Celiac there because anyone I asked about or mentioned it to has never heard of it. I guess I didn't explain...that building is basically halfway in between the building I walk in, and the one where my classrooms are. Now that it is winter, I am not wanting to walk outside for 15 straight minutes and go all around the campus. If it was spring time, I wouldn't really care. When I was leaving some guy was VACUUMING the dust. Which I'm sure just stirred it up more.

Unfortunately there is a strike going on right now so all services, INCLUDING the disability office, is closed so I couldnt even go talk to someone

~ Lisa ~

You might have to ask your professors if there's any accommodations that can be made. I am working on my masters as a distance student so my lectures take place on campus but they are taped and I watch the tape online. On campus students have access to the tapes a few weeks after the lectures, but someone in your situation could probably get access to the tapes the day of the lecture so you wouldn't have to attend class. Of course, that would probably require some administrative assistance which I'm guessing is on strike right now.

Could it be related to constipation or larger, hard stool (which is a symptom of celiac)? It could be that the stool is irritating them. As for a itchy bum, I haven't heard of that symptom, but I would not be at all surprised if it goes away when gluten-free. It seems like nearly everything can be a celiac symptom.

I haven't tried Noodles... what can a celiac eat there?

I have also had success at Noodles. They have a whole binder with all the ingredients of everything in it that you can look at. I've had the Pad Thai and a salad there - both with a few modifications. They have special pans that they use when making allergy meals. The first time I went there I asked for Pad Thai and when I mentioned the gluten thing the guy at the cash register turns around and yells at the top of his lungs to the cooks "Use the allergy pan!!!" It's become a bit of an inside-joke phrase that my friends use now.

I love the smell of baked goods, gluten free or not. And I love walking down the bakery aisle in the grocery store for the smell. I've never had a problem with it, and since I'm not walking by where they're baking and breathing in flour, I don't see a problem with it.

I think I'll just leave her a note or send her a text and be like...I can't take out the trash anymore and am going to use my own and can't waipe the counters either.

And I live in Saskatchewan, hard to get away from the farming, even in the city.

OK what an evil gluten week. As of today in the university the building that I CANT AVOID walking through is continuing their construction...inside...ABOVE the 1st floor, ANDDD there is DRYWALL DUST in the air and all over the ground. and we all know what drywall is made out of!! . I swear if there wasn't people around I would have probably had another panic attack by now...

~ Lisa ~

I would be sending an nice letter to the university on that one. The construction is not going to help you learn at all, especially if you get sick. I'm sure they have no idea, but someone needs to let them know to get awareness out there. In the future maybe they can plan drywalling for times when classes are not in session. I'm wondering if this is another time a 504 plan might help a college student...

It sounds like you might have a diagnosis based on dietary response! Why don't you try going completely gluten-free for a while and see how it goes? It's also very common for celiacs to be overweight - being underweight is an outdated medical misconception. I think it's something like 40% of all celiacs are overweight pre-diagnosis. The good news is that if celiac is what's keeping him from losing weight, going gluten-free could help that.

I also think it's somewhat relative to a person's normal bowel movements (if you can even remember what those are like!!!) I have days where I'm more D-like and days when I'm more C-like, but I wouldn't say I ever truly get D or C compared to what some of you deal with or compared to any medical definition. But for me it's a change and enough for me to know that something's wrong.

If you've been mostly gluten-free for the past few months, you probably won't get a positive biopsy. You have to be eating about three slides of bread for several months to even hope to get a positive. And scopes are notorious for false negatives. They only biopsy a few places in the intestine and those places may or may not be the ones that show damage. I would try the diet - you have nothing to lose. And if your husband does have celiac, then I think a negative is a good thing. It means he doesn't have a lot of damage yet. You could try enterolab if you want a more official diagnosis than dietary response.

The problem with dairy is that the lactose is digested by the tips of your villi. If you villi are damaged from celiac, it will be hard for you body to digest it until you heal. Maybe taking lactaid at the same time would help?

I think it's nearly impossible to properly clean wooden spoons. I don't care if there's a little rice residue stuck in them, but if they've been used for gluten products in the past, I'd be very nervous about continuing to use them. I'd also consider replacing badly scratched pots and pans, getting rid of scratched tupperware, replacing your collindar/strainer, definitely get a new toaster, scrub the cupboards. The other day I was going through my mum's cookie cutters and found wheat flour residue at the bottom of the container - we've been gluten-free for over two years!

I feel 100% better. I'm lucky in that celiac is the only intolerance I have (expect for peanuts, but that wasn't too hard to figure out and eliminate). Once I figure out the celiac, I didn't have to keep investigating for more health issues. Hang in there - you'll figure it all out eventually.

I read another article on this when the lawsuit was just beginning. She choose the horse because it would outlive her. A dog wouldn't last her entire life so she'd have to go through the hassle of getting another dog in 10-15 years. What I'm confused about it whether the horse is a trained service animal (the comments about he can be house trained make me think he isn't). There's obviously a service dog association that oversees dog training and what behaviors the dog must exhibit to qualify as a service animal - is there something similar for horses? If there's a horse service animal organization that has addressed all the issues we've brought up, then I guess it's a legitimate service animal. But I can't imagine that horses would get approved to be service animals just because of all these issues. There's nothing you can do about the amount of waste a horse produces - that fact alone would disqualify them from being an approved service animal.

She will say to her, "You can't have potatoes, right?"

Heehee, this reminds me of my first day of work. They took me to eat in the work cafeteria. I asked the chef what seasonings were on the potatoes because I couldn't eat gluten, and she told me that the seasonings were gluten-free but that potatoes had lots of gluten so maybe I shouldn't eat them.

It sounds like there's not much you can do to change your MIL. Seems like she's very set in her ways so it's up to you and your husband to keep you safe, unfortunately. For someone that self-centered, it can't see her being able to step outside that and think of you and your feelings instead of herself. And something as ingrained as good healthy wheat-based food, it would take a lot of compassion to understand that you can't eat it anymore.

Have you tried eliminating dairy? Many celiacs are temporarily intolerant until they heal.

Have you checked all your personal care products, pet food, gotten rid of wooden spoons?

What is your living situation? Just trying to figure out if there are ways you could be getting contaminated.

Sounds like you might have your answer. I agree with Momma Goose - no matter what the VA says, I'd go ahead and try the diet. With your family history, it certainly can't hurt. And remember that gluten is wheat, barley, rye and oats - not just wheat (I noticed you just mentioned wheat in your post and wanted to make sure you go completely gluten-free!) Welcome and good luck!

Blood tests and scopes are notorious for false negatives. To get a positive from either test you need to have a lot of damage. So until you've done all that damage to your intestines and the rest of your body, you won't test positive. I tested negative but knew I had an issue with gluten from an elimination diet. I decided to go gluten-free right away - there's no way I was going to ignore what I knew was making me sick. I couldn't wait to get better.

I think you should try the diet, too. It's very difficult at first and there is a huge learning curve, but after a few months you'll have it down. And in my opinion, giving up gluten is a small price to pay to live a healthy life free of all my debilitating symptoms.

The fact that he didn't have a positive blood test is a good thing in my opinion. It means he doesn't have enough damage yet to get a positive. If you see a positive response to the diet, I would consider that your diagnosis. I wouldn't want to keep making my kid sick for months just to get a positive blood test.

So, I guess what I am really asking is if I am negative for Celiac is there another kind of doc I should go to or just stop eating gluten and be happy? thanks! (sorry, I am feeling frustrated by this whole situation)

Usually a GI is the only doctor you can see about celiac. However, some people choose to see a natural remedies type doctor if they have a lot of vitamin deficiencies and other health problems caused by celiac. I would probably go gluten-free for a few months and if you continue to have major problems then look into these types of doctors. Some people also see a nutritionist, but most have found that you'll get more information from this site than from a nutritionist. If you don't live the disease, I don't think you can understand everything you need to consider to have a truly gluten-free diet. I did not see any doctors for additional help after I diagnosed myself

I also sent them an email: "I would like to comment on your article "Celiac disease: Should I use gluten-free skin-care products?" While the article is technically correct in stating that personal care products are only an issue for celiacs if they are ingested, I would argue that it is a lot harder to avoid ingesting all personal care products than this article implies. I know I get shampoo in my mouth on occasion. It may only be once or twice a year, but that's one or two glutenings a year that I'd like to avoid. I know I fidget with my hair and touch my face a lot so if I used products that contain gluten, I would often have traces of gluten on my hands which would lead to traces of gluten all over my house and end up in me accidentally ingesting gluten. As a celiac, I have chosen to minimize my risk of getting sick by eliminating all sources of gluten from my life - even those that are not intended to be ingested.

Thank you,"