Lynayah

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!

Yolo,

Coincidentally, I also had pneumonia as a baby -- I was not 4 months old, but I was still in a crib. I know because my mother was a nurse, and she somehow talked the doctor into allowing her to set up an oxygen tent over the crib -- promising to watch me carefully, so I wouldn't have to go to the hospital. This story was told many times throughout the years.

I can remember very far back to early childhood, and I also have a memory of being in the tent, in the crib.

For the record: This was back in the 1950's.

I guess I am a little confused as to why my body seems to want to hold onto weight when I do not have Celiac. (I am highly gluten-intolorant.)

So, if my villi are absorbing nutrients, why does my body still rebel?

I've been gluten-free since Sept and had a lot of D for a couple years prior, so I guess that if my body is reading that I have a toxin in my system, it might still hold on to everything for as long as possible, even if not Celiac?

It is all so confusing to me!

I am trying sooooo hard to lose weight (the gluten challenge I went through was killer for me, and I gained 15 pounds).

Right now, I'm eating mostly whole foods with an emphasis on meats and low-carb vegetables. I also have a cup of fat-free homemade SCD yogurt every day.

My body just doesn't seem to want to budge, and it's driving me crazy.

I know how to lose weight and keep it off. I used to weigh over 300 pounds . . . lost the weight and successfully kept it off for over 18 years, and now this.

Please, I need as many tips as I can get right now!

HELP!

Thanks for the reponse, Yolo. Were you diagnosed with Hypogammaglobulinemia, or were you put on the shots as a preventative measure against disease? Thank you, thank you. I hope more will respond to this.

I want to add that I missed most of second grade to to my having reoccuring infections -- had to have a bedside teacher.

I am on a quest to find a link between this and gluten. I know there may very well be one.

I am also a hairdresser in the same position. I've been using Redken color and I think it has wheat protein in it.. I e-mailed Redken and Matrix and neither one would give me a list. Their responces are on here under Cosmetic / Household Product Company Responces thread I started. I'm not sure what I am going to do yet. I love my profession and want to continue it until my hands do not work anymore lol.

I love Redken products and recently called the company for information. They were able to tell me that All- Soft Shampoo has gluten but the conditional does not. I asked about All Soft Velvet Whip -- they weren't sure but said they'd check and get back to me. It took over a week, but they eventually called and said it is gluten free. They also told me that Smooth Down Shampoo is gluten free.

Many of the products do have gluten -- everything needs to be looked at individually, from what I gleaned.

When you call, it helps to have specific products in mind. Perhaps if a professional called they could answer to all products, but for me they wanted just to know what I was using.

Anyway, I found them to be extremely caring and helpful. I'd suggest calling instead of writing to see if you get better care. Let us know!

Michelle: Welcome!

I'm not sure what this has to do with the topic of product lists.

Simple: What I'm saying is that many of us all too often blame a product or label as being wrong, when in fact we might be doing something else wrong that causes a gluten reaction without knowing it. If we happen to do it at the same time as trying a gluten-free food, it is easy to assume the food is glutened or the label is wrong.

I've made that mistake a number of times, but I'm learning. For example, at one time the toothpaste I was using had gluten in it . . . and another time the shampoo I was using had gluten it it, which was fine as long as it did not go into my mouth while shampooing (but sometimes it did).

I have found gluten in hairspray, dish soap, hand soap, spices, and many other things. I did not know and blamed the reaction on other things.

This might not be true for you, but it may be true for others reading this thread, hence my posting what I did.

Good question. Thank you for asking.

For those who are not reading the entire thread, I just want to say once again (as posted earlier here), that I went on to discover it was not the baking mix that was causing problem. It was my making other mistakes (things such as using lotion that contains gluten and then putting my hands in my mouth to floss my teeth).

Many folks here stressed that I needed to be particularly careful that I wasn't getting glutened from anything else . . . and I swore I was being 100 percent perfect. (Well, I really thought I was!) Truth be told, I was still learning, and still making mistakes.

I've since used the baking a mix a few more times with great results.

That said, I still find I do better and feel my best when I eliminate refined foods of any kind -- especially when trying to keep my weight down, but when I used the mix again, did not cause any D, C, etc.

If I have a bag of bob's red mill baking mix and it expired in september, is it still good??? I'm doing an elimination diet, so it will be quite awhile before I can have anything.

Probably . . . the date on the label is often the "sell by" date. Also, if it says "best ued by" that doesn't mean you can't use it thereafter, at least for a time. If you are unsure, you might want to call Bob's and ask.

thanks for the responses! another thing... it feels like there is so much gas rumbling around in my stomach/intestines...i can hear and feel it constantly. sound familiar to anyone else?

rflynn,

Yes, I know that feeling all too well. It will get better once you go gluten-free (if not, be sure to tell your doctor).

Have a very happy Thanksgiving . . . I know you're not going gluten-free until after . . . know that you will have a lot to be thankful for once you do. In time, you will feel so much better.

I was given gamma globulin as an infant. I had pneumonia at age 4 months plus stopped growing. Fortunately I was put in isolation and the doctor figured out it was my diet. He was originally from the Mayo clinic so knew something about celiac sprue--which I was then diagnosed with. Unfortunately I was put back on gluten at age 4 (we had already moved twice by then). I kept growing so they thought I was OK--however my health deteriorated rapidly... Nevertheless I think the gammaglobulin made me more resistant to certain diseases than I otherwise would have been--I never got the mumps or strep throat for instance... so I don't think it hurt me to get the gamma globulin, it probably helped instead.

Thanks for the reponse, Yolo. Were you diagnosed with Hypogammaglobulinemia, or were you put on the shots as a preventative measure against disease? Thank you, thank you. I hope more will respond to this.

I wear stainless steel inserts and those saved me a number of years ago. Since going gluten-free, two years ago...HEY, it's my 2 year anniversery!...so much more pain, neuropathy and other foot pain have gone by the wayside. I still need the inserts and I replace the rubber stopper thingees every couple of months but it's a huge difference. I can relate to being able to wear leather shoes even sometimes pretty shoes for awhile. I used to revert to wooden Dr. Scholls as my fall back shoes.

I congratulate you on walking for a whole day in leather shoes and no follow up pain!! I used to have to massage castor oil into my feet 2-3 times a day to combat the pain but I seldom do that any more.

I say paint your toenails and go try on pretty shoes. You don't have to buy them, just take a picture of your feet in the shoes and meditate on them until you are well enough to wear them for real!!

Castor oil? That is a new one for me. Did it help? Interesting . . .

Paint toenails: Yes! I think a pedicure is definitely in order. What a wonderful way to celebrate - thank you for the suggestion! I'm going to pick a CRAZY color, just for fun.

Looking for opinions: I have severe bloating, gas, and "D" conditions periodically throughout the month, more often than not, which have worsened over the last two to three years. I've also been going under some of the worst stress of my life the last two to three years. Coincidence?

Anyway, two years ago, a friend recommended I go with the gluten free eating when we compared symptoms, and I put it off as it seemed too limiting. Fast forward to the last two months or so, and I'm barely human. The symptoms are awful. So I decided to try it, and I've felt some relief intermittently over the last week. From what I understand, this takes some time and anything that might help is welcome, so I'll bide my time and stick with it.

So, question #1: Is it worth it to try and get tested for celiac? My doctor suspected I had IBS several years before, but since no one had any real concrete steps with which to proceed, so nothing ever happened. I DO NOT have health insurance, so if I go for testing, it's something I'll have to make payments on at my dr's office. Since it appears from what I've read that testing is often not very reliable, is it worth it to be tested?

Question #2: being currently self-diagnosed with issues with gluten, possibly a IBS or celiacs or an allergy (see question #1), I have no idea how to answer people when they ask me why I'm doing this strange eating thing right before the holidays. For example, today I talked to a friend, I said it's possible I have an allergy to gluten or celiacs, and in that wonderfully snotty tone, he said, you're not self-diagnosing, are you? And my MIL thinks I'm over-reacting...which I suppose is easy to think when you are not the one embarrassed in public, a stomach three times it's normal size when affected, and D so bad I occasionally haven't made it to the restroom. Yep, I'm over-reacting. Grrr...I digress. What do you say that gives you some credence, and avoid the reactions?

Yes, it is worth it to see a doctor. Please do.

Others' opinions: All that matters is how you feel about YOU. Do what you think is right. If others understand, fine. If they don't, so be it. Do not worry about them.

Come here, and we'll give you all the support you need. Not everyone understands, but we do.

It was within days for me, too, although because I had so much learning to do, AND because I made some mistakes, it was a couple months before things really started to get better. I am still in the processes (went gluten-free in Sept) and feeling incredibly better all the time.

It is different for everyone.

Because I am 56, I don't expect my body to feel fully healed until six months to a year. The good news is that the pain I was in is just about gone! This feels like a miracle to me.

I am still struggling with losing weight, but that will probably take time.

Anyway, there's hope! Please anticipate feeling better, day by day, from the start . . . as long as you're following orders and not making mistakes.

You're in my prayers!

I've eaten products that say they are gluten free and had reactions. I figure there is something else I'm reacting to in them. Or that someone was leaning over inspecting the product line while munching a ritz cracker.

LOL!

It is interesting how reactions happen, is it not?

That aside, for me, there have been times when I swore the gluten-free-labeled-food I ate caused a reaction, only to later discover that I maybe had gluten on my hands (hand lotion, for instance) and then, without thinking, put my fingers in my mouth (to floss teeth, for example) . . . or that a plate I used had something with gluten in it previously . . . and the person who used it didn't wash it well enough . . . or that my daughter fed the dogs OVER a plate I had sitting on the counter (AUGH!) and maybe something dropped in.

Not long ago, I was serving food at a fund-raiser. I was wearing surgical gloves as protection. Two dear friend were leaving the event, and I blew them a kiss . . . which of course meant I touched my hands to my lips . . . GLUTENED!

At work, I was putting peel-and-stick stamps on envelopes and eating an apple at the same time . . . GLUTENED.

How easy it is to make a mistake. Maybe not for others here, but I'm an expert at it!

Hypogammaglobulinemia - Has anyone else out there ever been diagnosed with this?

I took shots for this for years in my childhood and teen years. I was told years back I was misdiagnosed.

Now, as I look back, I wonder if the diagnosis was due to problems I was having with gluten.

Any thoughts out there?

My family thinks I am a bit loco because I see symptoms of this everywhere now. I. too, have become an activist of sorts and take any chance I can to educate those willing to listen as long as they don't get that glazed over look in their eyes (is that the gluten glaze talking???) Even though people want to have pity on me for having to "give up so much" dietarily I really feel it is the other way around. Yes, and while the food commercials and cooking shows shows like Diners, Drive-ins and Dives that my family loves to watch do get me every once in a while I will never trade that for this. I have never, and I truly mean never, felt this good in all my living years. The last few were dying years..but now I am back to living and I am going to chose that any day over the other!

May you have many years of slipper free dancing.....oh, but slippers are still good. I have fun with the thought that since people expect me to wear inappropriate footwear, I do so unapologetically with no hesitation anymore even though I can now run like the wind and wear real shoes too.

CS

What a great post!

I know what you mean about "dying years" -- all too well.

Yes, yes, me too -- I see symptoms in so many people -- people who have white spots on their teeth, people who have been diagnosed with RA, IBS, etc., people who cannot understand why they have a very difficult time losing weight when they eat gluten-ridden foods. (I am not as sensitive to those who do not gain and cannot gain since I've not experienced that side of things.)

I sometimes speak up, but not always. I am acutely aware that I am now looking at the world through gluten-intolerant eyes . . . and that cognitive dissonance has taken over . . . so I would guess that I am over-estimating how many others may have it.

That said, I bettcha a lot of them do.

Most do not want to look at it, sadly. I must admit that, back in the days when I could eat gluten without debilitating symptoms, I probably would have been the same way.

I actually thank the heavens that I was finally pushed into life-threatening problems. Without it, I would have just suffered through until the day I died. If someone told me I should give up gluten, I would have done everything in my power to prove them wrong. I loved gluten almost as much as life itself -- a/k/a gluten addiction.

I have only been gluten-free for a very short time, so it is too early for me to comment fully, but so far I am amazed at how DELIGHTED I am to give up gluten. Not a problem!

Of course, it helps that, should I want them, there are so many wonderful recipes out there for gluten-free breads, pancakes, etc. It wasn't so easy a few years back.

Everything is a lesson . . . EVERYTHING is a blessing when looked at the right way.

Thank you for your wonderful words!

I have had foot pain (not to the extent of you and not gluten related) due to plantar fasciitis and flat feet. No shoe would be comfortable. The foot problem started causing me leg, back and hip pain. In my neverending search for a comfortable shoe with a good arch support, I found Keen shoes. I love them. The first time I put them on I was in heaven. They were comfortable right out of the box. I now have one pair of sandals (almost worn out) and three pair of regular shoes and I want more. They are a little odd looking but the comfort factor makes up for it. They do have some cute sandals and mary jane type shoes that would look good with buisness casual. I am glad you are doing well and have continued health.

Wow -- checked out Keen online. Looks great! I'm going to give a pair a try.

Lynayah .... so happy you are doing so well!!!

Hi there! Thanks!

Off topic I know, but what happened to your adorable photo?

I have been using Hymalyan Salt Drink every morning to help combat dehydration. If you search the term on YouTube, you will find videos that explain it.

There is also a book: Water and Salt, The Essence of Life.

I am not smart about it, but I've been using it, and it has helped me very much.

Also, Hymalyan Salt on food is AMAZINGLY WONDERFUL. Really, really, really good.

I am learning that if the label doesn't specifically say "gluten-free," that I need to call the company to check.

Also, I've found that some products are gluten-free one minute and then NOT gluten-free the next. Wal-Mart frozen vegetables are a good example, at least in my area. The bags that used to say gluten-free now say that the item has been processed in a plant that may contain wheat.

They change plants.

Also, just because a label says that a product doesn't contain gluten ingredients doesn't mean that the product isn't produced in a facility that also processes wheat.

Those who have posted this are right: Always check the label. Always. . . .

And call the company if you are not sure. Give them hell -- ask about everything. That is the only way they will learn.