Lynayah

"Thank you so much for understanding my need to bring my own food! I so wish I could have had your cooking, I am sure it was outstanding, but knowing that I was free to do what I needed to do allowed me to have a wonderful time with everyone here tonight. I really appreciate the understanding you gave to this."

Hi, Everyone,

For those of you who have been following my threads (or for those I have yet to meet), I have been diagnosed highly gluten-sensitive, non-Celiac. Gene tests (DQ 2 and 8), and biopsy negative.

Something haunts me, though. For nearly 10 years, I had reoccuring sores in my mouth -- slits that would appear out of nowhere and hurt like heck. Thay are gone now, thanks to eating gluten-free.

My question: Are sores in the mouth a symptom of gluten-intolorance as well as Celiac . . . or Celiac only?

I don't know much about dq1 and dq3--

As for should you be test for dq1 and dq3 - it will not make any difference since you have already seen improvement in a short time - seems you have your answer - live gluten-free.

That being said - your children may benefit if you know that you carry genes for intolerance - someone else will have to chime in, but I did learn that my pair of dq2 means that all of my children carry celiac gene - doesn't mean they are celiac, but that they can be -- if I had one copy my children could, but not definitely carry the gene.

So I guess the question is do you stay gluten-free, continue to improve and educate them on symptoms to look for. I also believe (but don't know for sure) that if you are intolerant of gluten, not celiac that gluten isn't causing damage to your body -- just giving you symptoms????

Hope others with more knowledge of the gluten intolerant genes chime in.

Thank you so much, Lisa!

I've been eating gluten-free for several weeks now. That won't affect my biopsy will it?

You should call your doctor and report that you have not been eating gluten. Chances are he/she will ask you to eat it for around 8 weeks before being tested.

I know this probably feels like a setback, but it is not. Just the opposite: GOOD THING YOU ASKED! You want to make sure that you are being tested as responsibly as possible.

See this resent thread as well -- it talks about the same thing, and it will help you feel better:

https://www.celiac.com/gluten-free/index.php?showtopic=64212

CONGRATULATIONS! That is wonderful!

I'm waiting on my follow-up results, so I can really understand how important this is for you. Way to go!

Isn't it wonderful to be on the other side of things?

Hugs,

Lyn

I've decided to take the plunge, go gluten-free, and hope that this DH-like rash will disappear. Question is, how long should I give it? A month? 3 months? Longer? Can others please share how long it took to see healing of the rash after going gluten-free? I'm not taking any other meds for it, and I'm even putting off acupuncture treatments so I can see what the diet alone is doing for it. I know acupuncture would help it tremendously, as it has in the past, but I don't want to muddy up the waters when it comes to what is helping it. Thanks for any thoughts!

Michelle in TN

Hi, Michelle!

It is different for everyone. You might want to take at a similar thread that was recently started here:

https://www.celiac.com/gluten-free/index.php?showtopic=64098

Hope this helps!

Lyn

Look at all the sources of possible gluten. For example, does the soap in the school washroom have gluten-free soap, and if not, might he wash his hands and later put his hands in his mouth?

bump

Take a look at the Carbohydrate Specific Diet at Open Original Shared Link

The information there may help you (it helped me).

Try not to be nervous about the actual test... it's a piece of cake. There's no icky prep (like w/ a colonoscopy) and they give you good sleepy meds.

I remember when I was in nursing school (in the mid 70s) and they gave endoscopy patients a VALIUM before the test... and then put this big tube down the patient's throat while he/she was completely awake telling them to "SWALLOW... SWALLOW!!"

Thank goodness for those awesome sleepy meds... you'll take a nice nap and wake up when it's all over!!

I agree! My biopsy went so very smoothly, as did the biopsy of others I've talked to. Really, really . . . it is indeed a "piece of cake" . . . let's make that a gluten-free piece of cake. It is a slice of heaven compared to a colonoscopy. You'll be fine.

Relax and know that all will be well. I promise you, the anticipation is the hardest part . . . that, and waiting for the test results.

Glad to hear you're finally going to get some answers. Relax and stay well . . . and be sure to let us know how you do.

Hugs,

Lyn

Everytime I drank a Whey Protein Shake, I would have problems. Is the following correct? Whey comes from Milk. Many Celiacs cannot tolerate lactose because their cilia is damaged. Until they become normal, they need to be careful with dairy products. I believe this could be correct. Am I right? Thanks, Rock(a new member just trying to learn about this disease).

It could be the milk, or it could also be that the powder is manufactured in a facility that also processes gluten or wheat . . . or it could be something added to the whey protein shake that is not gluten free.

Do you have a list of ingredients? If yes, you might want to post it here for everyone to take a look.

I found this link that has a recipe for a Better Batter bagel. Open Original Shared Link

I have heard wonderful things about Better Batter -- I purchased five pounds but have yet to use it. The people in my GIG group LOVE it and say it replaces regular flour extremely well.

Hope this helps!

Thank you for the voting and comments, folks. I think it's really helpful to get a handle on what we're dealing with here.

We don't have a lot of numbers yet, but so far it looks like twice as many people are OK with chex as are having problems. But that's still a pretty significant group of people having problems. Maybe after this poll runs a bit longer it might be helpful to contact General Mills with the information.

-Elizabeth

Elizabeth,

Thank you so much for caring about this issue!

Check this one, too:

Open Original Shared Link

Hi Mandy

I'm so glad you have a supportative family. That is a BIG plus...they may not get it right all the time but it is great that they are trying....

AMazon has tons of gluten-free products & reasonable to ship.Many have free shipping.

Cakes! Pamela's has two cake mixes that are very good. Betty Crocker has just come out with gluten-free mixes, brownies too. I haven't tried them yet but I have seen mixed reviews about BC.

A really great cookbook is Baking CLassics by Annalise Roberts (AMazon) wonderful recipes for cakes, wedding cake, ice cream sandwiches & much more.

Open Original Shared Link this is a great flour blend & she has soooo many recipes on her site. I make hot pockets, crossiants& more from her flour blend.

I also love Meister flour. both ship. You can also get better batter from Amazon.

If you Pm with your address I will send you a few excellent recipes...twinkies, danish & pop tarts & more. I don't have them on the computer so I will print them out for you...

My grandkids honestly don't even think about being gluten-free anymore .They have never been left out because of being gluten-free. I match everything. Funnel cakes ! Yum...

Here is a short list of what you can look for at your reg grocery store...

All gluten-free!

jello

pudding

cool whip

prego sauces

McCormick spices

contadina tomato products

Jif

herb-ox bouillon

ortega taco shells hard

cheese whiz

ore ida fries ( clearly labeled

delimex taquitos

Inland valley fries( clearly labeled

dinty moore beef stew -not the chicken stew

bush reg baked beans

hormel chili

hormel spam

philly cream cheese

kozy shack pudding

Hellman's mayo

Miracle whip

frenchs mustard

pam cooking spray

ragu pizza sauce or pizza quick

don pepino pizza sauce

Progresso soups:

creamy mushroom

lentil

chicken rice

chik & wild rice

chicken vegetable

clam chowder

chicken broth

Rachel Ray beef or chicken broth

crisco

hersey cocoa

lea & perkins worchestire sauce

Dietz & Watson deli meats

Boar's head deli meats

Bell & Evans la choy or wal mart brand soy sauce

Nature path has rice krispies cereal. I like Kinnickinnick brand of rice krispy cereal.

& their K-too cookies Celiac Specialities has donuts to die for, stuffin mix too & pot pies too..

Joans gluten-free great bakes has bagels, english muffins , pizza shells & scilian pizzas to die for!

conte's has ravioli, pizza , piergo's, & frozen entrees, yummy

seitenbacher has gluten-free egg noodles that do not break apart

bristol buns has wonderful buns for deli sandwiches & burgers. I take with me when I go out for a burger

everybody eats has the best baguettes & ficeille rolls...

these are mostly mailorder but that is how I must shop as we have nothing here......

Whole foods has several breads that make good grilled cheese...

Glutino pretzels are good.

Pamela's pancake mix

In arizona I believe Carol Fenster has a bakery tha tyou should be able to order from....

blessings

mamaw

Mamaw, your posts are always sooooo wonderful! You've reminded me of a few brands I've forgotten about. Thank you so much!

For people who ship to your area: Take a look at the food mall here, too.

The University of Chicago has a gluten-free care package that they send to people recently diagnosed. It is WONDERRFUL! IT IS FREE!

Here is the link:

Open Original Shared Link

Mine came with cookies, pancake mix, sweet and salty items, a shopping reference guide, and so much more.

Hope this helps.

im 15 and ive been trying to find gluten-free foods, and its been kinda hard.

ive spent hours in grocery stores reading labels and making sure there are no cheese or wheat in anything.

what i really miss, though, is bingeing out on stuff like cookie dough or rice crispy treats and even some kinds of chips with friends whenever im with them. now i have to take a bag of honey nut rice chex (which really arent that bad, they just look at me like im a freak or something) and make gluten-free pancakes at their houses.

im really frustrated with this disease, and trying really hard to cope.

sorry if i sound whiny.

anyone find junk food stuff to share with non-gluten-free friends that they might like too?

not against veggies or anything, just wanna figure out some more possibilities with food!

We ALL feel your pain. You are not alone! We have all been there.

Heck, I'm STILL there!

Do you have a Costco in your area? Costco brand tortilla chips are very good and they're labeled gluten-free, at least they are in my area (Midwest) as of today . . . I was just there this afternoon.

Also, in regular stores:

Act II Popcorn (except extreme butter)

Orville Redenbacher Microwave Popcorn; all varieties EXCEPT the caramel pour-over popcorn.

That said, as far as I know, these are still gluten-free. ALWAYS DOUBLE CHECK -- call the company to confirm they are still gluten free, or check the label.

I eat rice chex 2 or 3 times a week and haven't had any issues. Honey nut chex bothers me, but I don't think its a gluten issue, honey nut flavored things often bother me-which is odd since I can eat honey roasted nuts all day long and have no problems???

I haven 't had a glutening since I've gone gluten free (to my knowledge at least), so I'm not sure if people really can tell a glutening from just something that didn't sit right. But, certain foods for no apparent rhyme or reason just don't sit right. Before I knew I had celiac, I was a big cherrios eater. I never had any problems with cherrios, but I couldn't eat honey nut cherrios without getting a sour stomach. I don't think it was a celiac issue, or the regular would have bothered me also. I've had similar experiences with granola bars. Some granola bars are just fine, while other flavors of the same brand give me a sour stomach.

On my box the ingredients are: Rice, whole grain rice, sugar, salt, molasses, vitamin E (mixed tocopherols) and BHT added to preserve freshness

Then they list the vitamins and minerals: calcium carbonate, iron and zinc (mineral nutrients), vitamin C (sodium ascorbate), A B vitamin (niacinamide), vitamin B6 (pyridoxine hydrochloride), vitamin B2 (riboflavin), vitamin B1 (thiamin mononitrate), vitamin A (palmitate), A B vitamin (folic acid), vitamin B12, Vitamin D

It doesn't say anything about shared facility or shard equipment, but I'm not sure if they have to or not-granted that would only tell for wheat, but they do make wheat chex.

Chex ingredients: I remember reading somewhere that tocopherols sometimes have a, I believe it was, wheat germ oil base -- let me know if I am wrong.

Thank you, Peter!

I worry about what is going to happen to naturally gluten-free products if companies fear litigation or similar unfavorable action. We certainly don't need less gluten-free products.

Good point. The good news is that you may not have to worry.

From what I understand (and those more educated than I, please tell me if I am wrong), foods labeled gluten free or "naturally gluten free" are not necessarily saying they ARE gluten free. Something can be "naturally gluten free" and still be manufactured in a facility that also manufactures gluten or wheat.

So, because they're not really making any promises, they probably don't have to worry too much about losing a litigation.

That's the good news, at least for them. It is also good news for folks who are not so ultra sensitive to gluten that they must have products made in a dedicated facility.

The not-so-good-news is that many consumers are not educated in what the difference is between something labeled "naturally gluten-free" and products that are manufactured in a dedicated facility or labeled "certified gluten-free." Some highly sensitive folks get glutened without expecting it, and they often cannot figure out why. Words such as "naturally gluten-free" can trick people, which can be unfair.

So, the real worry is how to help people understand. Sadly, many manufacturers do not support that concern.

Swimmr,

Good post.

Has anyone noticed that if they eat free-range eggs they get a reaction, but not to regular store-bought eggs? (If this has already been discussed here, I apologize -- haven't read the entire thread.)

I would like to learn more about HLA DQ1 (and DQ3) and their link to gluten sensitivity, and I would appreciate hearing from those who have been tested for it.

I am a highly sensitive gluten-intolerant non-Celiac (Very High Gliadin). My DQ2 and DQ8 and biopsy came back negative.

All of my symptoms completely mimed Celiac disease (see my signature for the partial list).

Anyway, I've had a few folks here tell me I should ask for a DQ1 and 3. I would like to know more about how taking the tests may have helped others.

Right now, my biggest question is: If either comes back positive, will it really help me if I'm already following a gluten-free diet?

Of course, I know it would isolate genes that might alert my children to watch themselves, which would be important.

On the other hand, I worry about insurance. If something comes back positive, I do not want to put myself at risk with my coverage, costs?

Mostly, I'd like to hear your stories. Any personal histories, information appreciated. Thank you!