Lynayah

Everyone's covered what I would have said, but I wanted to commend you and your husband for going gluten-free with your son. That's awesome. My husband fully supported making our kitchen gluten-free and it's meant the world to me.

I agree! Good for you! I wish my family were as supportive (they're good, but they're not willing to go gluten free just yet).

I hope you'll keep posting and keep us updated as to your experiences in making your kitchen gluten-free. Bravo!

Aside from 24-hour Specific Carbohydrate Diet Yogurt, has anyone found a good, gluten-free pro-biotic supplement? I could use some help in finding one. Thank you for your help!

Malt Diastase: Yes, be very careful here. Malt Diastase, as far as I know, is a no-no for those who cannot eat gluten, due to the barley.

I am not aware of any way to separate the barley from the malt in supplements, but if I'm wrong, I would love to know.

In the meantime, I'd stay clear of this product.

Hi our son tested negative to the home test they sell here in Canada but now his poor little feet are cramping. Is this common in Celiac children? We are taking him for blood work through the doctor. I have heard from this forum test results in children are not that accurate so we will try him on gluten free either way. What causes foot cramping in Celiac?

I don't know if this will help, but as an adult -- probably at the onset of gluten-intolerance -- I had horrible food cramping, which only got worse over time.

Tests: Make sure Doctor looks for gliadin as well as celiac. A high gliadin level shows gluten-intolerance, which can be positive even if the "celiac test" comes back negative.

Here are a few more comments:

https://www.celiac.com/gluten-free/index.php?showtopic=65309

Thank you! I didn't see this thread and have subscribed to it as well -- nice that it has the entire article at the beginning. Much appreciated.

Here is a link you might find useful:

Open Original Shared Link

What was your vitamin D level? Was it over 50?

Make very sure that the doctor who tests you for vitamin D really knows what he/she is doing. I had similar symptoms, figured I was okay and ignored it.

It wasn't until my joints started swelling that I finally went to a good Rhumatologist. I thought perhaps the chronic fatigue, body aches and weakness were rhumatoid arthritis.

He sent my blood work to Mayo Clinic for a more complete diagnosis, it came back that, by that time, I had very little D in my body.

I was so weak, I couldn't even carry a tiny wallet purse that weighed practically nothing.

The fatigue I felt was a fatigue that is almost impossible to describe. The only way I can describe it -- it's like the tiredness I felt when I was pregnant, only 1,000 times more intense. I was so very sick.

Turned out the joint swelling was from lack of D, too.

He prescribed mega-doses (very important not to take them without professional supervision), which led to my feeling better.

Now hear this: He missed my gluten-intolerance, though. He tested me for celiac and when it came back negative, he said I didn't have it. BUT HE didn't read the gliadin when he did the celiac bloodwork.

Turns out that, even though I don't have celiac, I have acute gluten-intolerance, which is probably what caused my body to be drained for vitamin D, and goodness knows what other nutrients. Even though I don't have celiac, I had malabsorption issues -- nasty ones.

Thank goodness, University of Chicago Celac Center figured that one out!

Anyway, it pays to get second opinions!

Hi we suspect Celiac in our two year old even though his tests are negative so far. There is a family history of Celiac. Can you please share tips on how to make my kitchen gluten free and to avoid cross contamination? I am guessing throwing out my toaster and getting a new one would be a good start. What other household tools for the kitchen should I be getting rid of?(Plastic spatulas, plastic measuring cups, etc?) An y comments appreciated. Thanks

Good answers, above!

A quick question: Are you planning on making your kitchen completely gluten-free? That is, you will not be preparing any gluten items whatsoever?

I ask because I spoke with someone recently who purchased a new toaster thinking that it would be easier to "clean" after her family makes wheat toast.

You probably know this already, but whatever toaster you use for gluten-free toasting needs to be dedicated gluten-free only.

A dedicated can opener is a good idea, too.

Blender: I had good luck running it in the dishwasher for 10-15 minutes (I set a timer), then I take it out and hand rinse and dry it. This seemed to help really clean out the blade -- better than just blending soap and water in it.

I do the same with chef knives where I question if they may have been glutened -- sharp blades should not be run through the dishwasher. I make sure I get them out quickly -- maybe five minutes. Rinse and dry by hand.

This works best if you have a plastic silverware holder in your dishwasher. It is important to put the knife in a section by itself, and try to place it so it doesn't knock against anything as the water jets hit it.

It's nice to read that doctors are realizing that the diagnostic process needs to be re-evaluated so as to not cause the excessive health problems that are being seen because a patient doesn't meet the requirements... yet. Wonder how long it'll take to be revised?

I wonder as well. Since gluten sensitivity is getting more and more press these days, perhaps we are nearing a tipping point for progress. Hope so.

For those who are non-celiac gluten sensitive, here is an interesting article. Much of the info may be known to some here already, but it is worth a look:

Article: Gluten Sensitivity v. Celiac Disease- What do we know?

Open Original Shared Link

PS: The font on this page is too small for my comfort. If the same is true for you: If you open in as a PDF option on the page, it will be easier to read.

Best,

Lyn

I just wanted to add that, one thing that's worked for me when dining at someone else's house, I ask them to please, please not make anything for me and to please allow me to bring my own food. I will usually bring enough for everyone else, too.

I don't expect anyone to change a recipe or, well, ANYTHING just because I have to eat gluten-free.

The best part of this is that people feel free to invite me over all the time! Because they aren't intimidated by having to figure out how to cook for me, they relax and open the doors.

We all feel your pain! Many of us have gone through similar experiences and have had to learn -- sometimes over and over again, what works and what does not.

As someone said earlier, it really is all about educating those around you. If they don't get it -- REALLY get it, they won't know what to do or how to act. Part of the educating process is sticking to your guns, in an assertive (not aggressive and most certainly not passive-aggressive) way.

Many of us have special lines we use to help educate people. Some of my favorites:

"I'm so sensitive that I even have to use a separate can opener, toaster, chopping block, cookware than everyone else."

"I have to be so careful that I can't even allow someone to pass the bread plate over my plate . . . if even so much as one crumb of wheat falls into my food, I will be sick for at least a week . . . and the more often I mess up, the more the risk of additional disease and subsequently, early death, increases for me."

That one works particularly well.

Most people just don't realize the ins and outs. For example, a good friend of mine said to me "You can have the pizza . . . all you have to do is take the topping off the crust and eat it!"

People just don't get it, unless you let them know. Unfortunately, many of us tell our family and friends we can't eat gluten, and then we expect them to take it from there. When they don't act appropriately, we get angry or hurt (and for many of us, a bit passive-aggressive) because they didn't understand . . . when in fact, we didn't take the necessary measures to educate them and/or stand our ground. That's certainly been true for me!

A favorite "trick" with many for being assertive is to use the phrase "I need you to understand that . . ." followed with "because . . ."

So, for example, with the chicken nuggets: "I really wish I could bring chicken nuggets, but I need you to understand that it would be difficult for me to bring them, because I am keeping a gluten-free kitchen -- even my cookware or hands touching it could make me sick . . . especially if I accidentally drop a crumb onto something or put my hand in my mouth without thinking about it."

I have previously gone off all dairy. Now seem to do well with yogurt I make myself and ferment for roughly 24-26 hours to get rid of all the lactose. I believe the casein is OK. Maybe though I should go back to no cheese and eggs at all however...The cheese can get addicting, never a good sign. I was off all grains for 10 months and now use brown rice fairly regularly.

Meanwhile, certainly -- let's "talk."

Interestingly enough by the way my mother was part of a celiac sprue study at the University of San Francisco back in the late teens and through the twenties of the previous century. Unfortunately the results of the study were lost however.

Unfortunate for me when I came along doctors still thought one grew out of this condition, so they put me back onto grains when I was 4 years old--since grains no longer made me stop growing (as they had when I was an infant). Of course back then here in the States they didn't know (or should I say "accept"?) that it was the gluten (gliadin) at fault.

The good thing now with the advent of the Internet is that studies such as these are less likely to get "lost." Interestingly many of the things they are discovering now were previously discovered back then (at least according to my mom)! So I guess that has got to say something about the scientific validity of it all, eh??

I wonder if the research was inconveniently lost . . . or conveniently lost. What a shame that the research disappeared, both for you as well as the celiac community.

Thankfully celiac is getting more noticed. Am glad to hear that severe gluten intolerance is starting to be too.

I was reading the info below your posts and noticed you also have muscle and joint aches and pains. Its one thing that has stayed with me--fragile joint connections, try as I might old injuries still plaque me if I am not careful. I have to exercise gradually. I walk nearly every day and when am in good shape do push ups and use my Pilates machine, but can't always due to old injuries in my elbow/shoulder area from an old car accident. Its so frustrating! Am too hyper mobile. Seems a family trait. It would be nice to figure out if there was some kind of supplement(s) one could take to counteract this more effectively. I am much better overall being off all trace gluten and taking minerals and co-enzyme B complex and vit. D etc., but still must be careful. Latest discovery for me of late is to increase collagen and silica. Am actually drinking green tea to help with this... Am wondering if the trade off of now having caffeine is worth it...

Meanwhile let us know more about this study if you get a chance!

Bea

Bea, I feel your pain. Have you tried going without dairy altogether? Also, might you be available to talk privately?

Rereading this thread has convinced me to stick with WW. I had reached goal and then was diagnosed. Put on 30lbs. I have taken off 10 and have been struggling ever since. I would love thread on this subject.

Bravo! Thank you for your post!

The gluten challenge is what really did me in. It was 8 weeks of serious discomfort and hunger, hunger, hunger, bloat, bloat, bloat.

I thought that once I went gluten-free my old metabolism would return and the weight would start to come off again. NOT. My gliadin remains high, and the whole return-to-"normal" process takes more patience that I thought it would.

This week I am feeling better than I have in a while. I'm doing Core and using my weekly-points-allowance for glass of red wine with dinner, and I am experimenting with whole goat's milk in my coffee to see if I can tolorate it.

I have also eliminated soy, dairy and eggs. I have not been tested for sensitivity to these foods, but it seems I do better without them. Later, when I have had some time off of them, I'll reintroduce one at a time to see how I do, but for now, no.

I am trying to buy organic as much as possible, too. I am eating more legumes instead of meat.

I just found a local farmer who stocks organic grass-fed ground beef. $3.99 a pound -- for me, that's four 4-oz servings. Affordable!

COSTCO here also sells organic ground beef for about the same price, but I am not sure if the beef is grass-fed. I'm going to check on it.

Anyway, this personal version of the Core plan seems to be working for me better than anything else has in a while.

For those of you who are new to Weight Watchers: YOU DO NOT HAVE TO EAT THIS WAY in order to follow the program! There are many, many choices that you have, including eating anything you want as long as you count the POINTS (Flex Plan). Of course, if you have food sensitivities you just need to make sure you're choosing foods that are good for you.

The beauty of Weight Watchers is that it works for everyone -- with or without food allergies, with or without diabetes, etc. Because there are no forbidden foods, each individual can pick and chose the way that works best for them.

You also do not have to eat organic. Again, this is my choice.

Also, the Core Plan (a whole foods plan with limited non-whole foods allowed on the side, if wanted) allows for many more foods that I am allowing myself to eat right now.

Smithk6: Snacks: It looks as though you're not into a lot of processed sweets, but for those days when you might be (or for others here who are): Try this one: Any time you're craving something sweet, tell yourself you can have it, but only after eating a 1 POINT piece of fruit first.

Seriously, this works like a charm! You'll want the chocolate or the gluten-free brownie (which of course you can have as long as you count it), but you can have it only as a reward for eating a piece of fruit first.

It is amazing how often you won't want the processed sweet treat any more -- for me it is about 75% of the time! Try it!

Uhm, what is that... scary thing that the woman is staring at in the accompanying photo ? It looks like compost on a plate.

LOL! Well, if it is REAL chocolate cake and not gluten-free, it sure as heck is compost waiting to happen!

It is always wonderful to hear that more research on celiac is being proposed. Thank you for the link!

I had no idea however that there were mice that were affected by celiac. Are there?? I wonder what is done to either find or create that state in mice. I also wonder why more research concerning celiac and severe gluten intolerance isn't being done with actual humans.

Meanwhile I think the "97% undiagnosed" part is based on the fact that when doctors actually test for people who have celiac, they consistently find that its one in 133 who has it. However not that many people in our country actually have been diagnosed with it since the medical establishment isn't looking and most folks are ignorant or uninformed about the subject.

Even more folks are probably affected by severe gluten intolerance in my opinion. I say this based on the fact so many here on celiac.com cannot tolerate gluten despite having been tested and found not to officially have celiac.

Bea

Hi, Bea: Yes, I agree that this 97% draws merit from the current stats of 1 out of 133. It's quite an eye opener to see it described with the 97% slant, isn't it? It says the same thing (or almost the same?) yet gives it a whole new perspective.

I'm a little confused about the exact math they use, though. Ahorsesoul: I hope they answer your letter. I'd love to hear what they say. The next time I'm there, I'll ask as well

Bea, I agree with your gluten intolerance thoughts as well. I'm one of those folks who is "lucky" (HA!) enough to be so highly symptomatic (gliadin, gliadin everywhere, and not a drop to eat!) that U of C has asked me to be part of their research.

Seriously though, I do hope they learn a lot from us intolerant folks.

I roasted chestnuts last night! They were surprisingly easy to do and a nice treat -- something different.

Interesting new research being done at the University of Chicago:

Open Original Shared Link

This article was in the recent Living Without magazine. Its a great resource for newly diagnosed - and all - Celiacs and others with gluten intolerance.

Open Original Shared Link

Hi, Happy Girl . . . happy new year to you!

Thanks for your post. I get the mag. and had read the article, but there is a wonderful video featured on your link, too. I enjoyed watching it. Much appreciated.

PS: For those who do not subscribe to LIVING WITHOUT, it is wonderful.

It is working now - thank you!

Hang with us Lyn, we're gettin' there . . .

OK . . . I've spent a little more time with the "Watched Content" box.

First scenario: If you click on the "Topics" tab and you don't see your any of your subscribed threads but you see the "toggle topic with no new" button, this means none of your watched threads have any new posts.

Second scenario: If you click on the "Topics" tab and there is at least one thread listed, all of these threads listed have new posts. At this point, if you hit the toggle button (now at the bottom of the list of threads with new content), you would switch to all the other threads that you watch that DON'T have new posts. Hitting the toggle button again brings you back to the threads with new posts. If you select one of these threads that have new posts, it WILL take you to the first UNREAD post. Once you leave that thread, that thread name will be moved to the list of watched threads that have no new posts. (Note that if you use the back arrow to return to the watched content box, you will not see the updated thread list).

OK . . . As far as I know, I think the only way to access the Watched Content is from the home page. So the quickest way back to the Watched Content box is to probably hit "forum home" at the bottom of the page under the last blue border stripe.

Now, it strikes me that the toggle button should probably say "toggle topic with no new" when you are on the page with threads with new posts AND "toggle topic with new" when you're not. I'll ask Scott, but I might not fully understand this feature and it might be right as is.

Thank you! I'm so happy to learn this!!!!!

Just an FYI: My browser (Explorer) doesn't show "toggle topics with new," instead it just says "toggle topics with" -- the "new" doesn't show. If others view it this way as well, that may be adding to the new post confusion.

I reduced my watched topics to only two or three to make it more user friendly with the changes here -- but they have disappeared. I assume it is a temp. glitch as you continue to improve things here -- yes? Thanks.

Honey, I hear ya. I've tried tons of meal replacement diets that claim to be gluten free but they make my body react horribly. I found a good product that worked really well the first time - Kaeng Raeng (Open Original Shared Link) It's a fruit based meal replacement that makes you feel really full and "cleanses" your system. It might be worth a try. It's sort of expensive, but if you google Kaeng Raeng coupons you can find it for at least 20% off. It definitely felt the best the first time and then I had ok results when I did it a second time.

Hope that helps! Good luck!

Thank you. I'll take a look.

Hey Lyn checking in!

So good to hear that you are starting to feel better. And exercising consistently is a great start. The best exercise and diet plan is the one you can be the most consistent about, bottom line.

Thanks . . . and by the way, I want what YOU'RE HAVING! You look amazing! Great photo. Wow.