Lynayah

I understand your joy! A year ago I could barely get out of a chair and wore slippers everywhere to lessen the extreme pain and gelling from my RA. Once gluten-free I found that the RA just started to melt away. It's hard for me to realize that a bad day now is still ten times better than my best days used to be. Hey, the Chicago Museum.... big place... lots of walking.. way cool!

CS

Oh my gosh, slippers! Yes, yes. I know. I used to always carry a pair of Isotoners with me (with support insoles inserted) just in case I couldn't handle the Crocs any more. Last year in Disney World, those darn slippers kept me from killing myself (well, maybe not that bad, but goodness knows, I thought I was going to die).

Before that, when I would go to fashionable functions - I used to have to give huge presentations in front of hundreds of people . . . I would wear normal shoes until I wanted to stab myself . . . and then when no one was looking, I would put on the slippers. This worked especially well at weddings. I just waited until everyone had a drink or two, and then off with the shoes and on with the slippers! (That was back in my pre-Croc days when I could still get by with normal shoes for a half an hour or so.)

What really kills me is that so many wonderful people out there have the same issues as you and I do, but they have no clue as to what is making them so miserable -- they believe they are destined to a life with pain.

With each passing day, I am becoming more of an activist. My heart breaks for the all the undiagnosed folks out there.

Perhaps all this is meant to be. As they say, everything happens for a reason.

You should go dancing in your not so fashionable leather shoes...and strut the heck out of them

Oh yes! I'm cranking up the celiac disease player tonight and dancing my heart out -- hey, who needs to wait for a crowd. I'm ready to dance! (I will, of course, draw the curtains first. Goodness knows that the world may not be ready for a crazy woman who is high on dancing in granny shoes!)

That'll be my next step . . . opening the windows!

Thank you for your fun post.

Congrats on the pain free steps and may a pretty and comfortable pair of shoes be in your future.

Thank you, Ravenwoodglass. If not for you, I don't even know how far I would have come by now. You have been wonderful in supporting my posts and telling it like it is.

So, I'm thinking that Sex in the City shoes must be in there somewhere! <laughing> Except I'd kill myself falling off of them (gluten ataxia?). <laughing more>

Burdee -- oh my gosh what you have been through!

Good point about enzymes. I had a number of digestive enzymes that I had to throw away -- no gluten listed on the label, but when I called the company they told me the enzymes were manufactured in a plant that also processes wheat.

Just want to say that I've purchased Bare Minerals and love it. However, there is a vitamin boost liquid that came with the kit that may have caused an allergy reaction -- not sure, I will have to wait and try it again on a morning when I can be at home and easily wash my face. Not a problem, it was free with the kit. If I use it, fine; if not, fine.

The mineral powders are wonderful, and I love applying the makeup -- surprisingly creamy because not really a "powder," and very kind to aging skin - helps me look younger.

As an update: I checked on the liquid. The name of it is Bare Vitamins Skin Rev-er Upper. It contains Avena Sativa made from oats, so those of you who have an alergy to wheat may get a reaction, as I did, if the oats contain wheat.

The longer I get used to all this, the more I realize I probably have an allergy to wheat as well as gluten-intolorance. When I used the liquid, I had a full-blown nasal, eye itch allergy reaction. What's weird is that I also had an attack of diarrhea and loss of bowl control. It was small and my symptoms faded after a couple hours . . . but I find it confusing since I didn't think anything applied to the skin would enter my GI system.

Wait . . . on second thought, I might have put my fingers in my mouth while flossing my teeth, or I might have put some on my lips without thinking about it, and then ingested it. THAT would make sense.

Good grief. Sometimes I feel like Sherlock Holmes trying to figure out all this stuff! It is just so easy to make a simple mistake and not even realize what it was.

Anyway, just wanted to post the warning: Mineral powder fine / Skin Rev-er Upper not so fine, at least not for me.

You can also read about testing on the website here: https://www.celiac.com/articles/57/1/Interp...ults/Page1.html

This is a message for everyone who wonders if there is hope out there.

Yes, there is.

For many years now, my feet have been in so much pain that I could walk for only short periods of time, and I could only wear Crocs, even with business suits.

I hated having to wear Crocs all the time, but I was very grateful for at least finding a shoe that would allow me to walk a little. I will always have a soft-spot for those horrible, ugly shoes. They saved me.

Well, it turns out the foot pain was part of my reaction to gluten. Slowly, I've been getting better every day (unless I make a mistake which causes some of the pain to return for about a week). After a while, I was able to wear Crocs all day with just a little swelling but much more comfort.

Then, I was able to wear leather shoes, as long as I was sitting most of the day or walking very little. This was a big deal because I couldn't do it for years.

Anyway, yesterday I went to the Museum of Science and Industry in Chicago and . . . or my goodness I am so excited to report this . . . I WORE REGULAR, LEATHER SHOES ALL DAY!

Okay, so the shoes still weren't the greatest fashion statement, they are made for comfort and not for style, but I WORE THEM ALL DAY without a problem. AND I had no foot pain or swelling at the end of the day, either.

If you are in similar pain due to gluten-intolerance, please know there is hope. Please know that despite going through the trouble of learning how to live gluten-free, and despite the horror of having to give up so much, the diagnosis can be a very, very great blessing once you begin to get on the other side of things.

Who the heck needs toast when, in exchange for it, you can walk like a normal person?

WHOOOOO-HOOOOO!

Sounds like me! I also had all of the above plus extreme body aches, HORRIBLE foot and lower back pain, vitamin D deficiency . . . the list goes on and on (see my signature).

Initially, my Rheumatologist gave me a "Celiac blood test," which came back negative. However, when I went to University of Chicago for a second opinion, they explained to me that he did not check my IgA, which is important.

Did the doctor check your IgA? Mine came back extremely high, indicating a strong gluten-intolerance but not necessarily Celiac -- some folks who are highly gluten-intolerant get as sick, if not sicker than some with Celiac.

I found it all very confusing at first. I found a book at the library that describes the testing process particularly well: Healthier without Wheat, by Dr. Stephen Wangen.

One mistake I made: I gave up gluten, felt better (despite making some mistakes), then when I went for my second opinion, I was told I needed to eat gluten for many weeks in order to be tested.

Going back on gluten was hell. It would have been much easier if I hadn't given it up first, and I probably would have had an even more accurate reading. During the challenge, I ate only one slice of bread per day. It was all I could handle. Augh!

If you want to go through the tests, you might not want to give up gluten just yet.

However, many people opt to just do the diet and not go through all the tests, particularly if they don't want weeks of sickness or if they are concerned about insurance coverage. For me, I wanted to know.

That said, I'm not convinced that the tests always show the results they should. Ravenwoodglass makes an excellent point.

For example, I spoke with a man who owns a gluten-free store. His daughter has the gene, but he and his wife tested negative. His wife can't eat gluten. Weird . . . and I hear stories like that all the time. Very confusing.

Whichever way you go, we are here to support and help you, just as Raven says. Glad you're here.

Found this here: <a href="Open Original Shared Link disease=1&hl=en&ct=clnk&gl=us" target="external ugc nofollow">Open Original Shared Link

"A recent study used lactulose hydrogen-breath assays to show that small intestine bacterial overgrowth (SIBO) is likely a routine cause of non-responsive celiac disease"

Were you able to tolorate the yogurt on SCD? Did you make the 24 hour version suggested in the book?

Have you had your vitamin levels and thyroid checked?

Also, are you absolutely sure you're not cross contaminating yourself? Things as simple as cast iron pans, cutting boards, etc. can do it . . . but of course you probably already know that.

Are you sure that everything -- ABSOLUTELY EVERYTHING that you put in your mouth is gluten-free, without assuming it is?

I found out that my toothpaste wasn't gluten free, and it really freaked me out! Who knew? Also, the flavored coffee I once enjoyed was a no-no.

It really pays to check everything . . . and just because a reference book says that something is gluten-free doesn't mean it is. Wal-Mart for example changes suppliers all the time. One month, a bag of frozen veggies will say "Gluten Free," the next month, the bag will say "manufactured in a plant that contains wheat." That one just happened to me this week!

Another one: A popular grocery store reference guide listed a Meijer brand product as gluten-free, but when I read the label, there was a wheat warning.

I am sure the reference book was right, at the time of publishing, but things change.

All this said, you are probably much better at going gluten-free than I was, and I'm probably just rambling here . . . but it is very easy to think that you are entirely gluten-free when you're not.

Just a thought.

Hugs,

Lyn

Last year, I was diagnosed as having basically almost no vitamin D in my body. I cannot even begin to tell you the exhaustion I felt. I was also in pain, my joints were swelling, and I was so weak I could hardly carry a quarter pound wallet purse. It was horrible . . . and I never, ever, EVER would have guessed my problems were from a vitamin deficiency. I was always so careful to take care of myself.

I had been taking a high quality multi every day, as well as extra calcium, etc., but my body was not absorbing D.

I agree with the other wonderful posters here: As soon as you are able, you might want to consider having a GOOD GI or rheumatologist check your vitamin levels -- or whatever assistance you can get right now.

Be careful -- it is important not to self-diagnose yourself and equally important not to take mega-doses of D (or other vitamins) on your own. You need a qualified professional to guide you. D can be dangerous if not administered correctly, as warranted, in just the right amounts.

You're in my prayers.

Lyn

I must say that I agree with the CC issue. In my area there are some restaurants who brag about having gluten-free pizza, but when you talk to them you learn that they do not have a dedicated oven, and the wooden paddle they use to transfer the pizza in and out of the oven is the same as the one they use on the flour ones.

If Papa John's could become certified gluten-free, I'd love it, but I am clueless as to how they could do it as their stores now stand.

I hope I am wrong. Someone please show me where I'm wrong! : ) I'd love to have a gluten-free Papa!

I have not tried the product so I cannot comment . . . but for those of you who feel you have issues with the product . . . has anyone tried to contact the media to report it? Maybe a bit of investigative journalism is in order here? If enough people have had problems, it might do wonders in opening people's eyes as to the importance of proper testing, labeling.

Of course, there should be a number of people who really have had problems who are willing to ban together on this.

Just a thought.

I have wondered if I have an allergy to wheat as well as gluten-intolorance. My nose runs when I'm "hit," and it happens right away. The GI problems hit shortly thereafter.

It's interesting . . . for YEARS I thought I had weird sinus problems as well as an allergy to mold. I ALWAYS had at least two full-blown sinus infections per year (horrible, HORRIBLE infections, and goodness knows to what extent the antibiotics messed with my GI system).

So far, since giving up gluten, my sinus passages have cleared. It was one of the first things I noticed after going gluten-free. I remember lying in bed, turning to my husband and saying, "I can BREATHE!" It has been such a blessing not to have a box of tissue in every room any more. My nose isn't a faucet now; it's a nose!

I can't wait to see if I can get through the rest of the year without a sinus infection. Dare I say it? . . . So far, so good! : )

So, bottom line: Your question about allergy is a good one. I am looking forward to seeing what others might post here. Thank you for this topic.

Just want to say that I've purchased Bare Minerals and love it. However, there is a vitamin boost liquid that came with the kit that may have caused an allergy reaction -- not sure, I will have to wait and try it again on a morning when I can be at home and easily wash my face. Not a problem, it was free with the kit. If I use it, fine; if not, fine.

The mineral powders are wonderful, and I love applying the makeup -- surprisingly creamy because not really a "powder," and very kind to aging skin - helps me look younger.

Gluten hits me very quickly, less than an hour to up to two hours.

i took a blood test for food intolerance and came up very high for cow and goat milk (and egg). should i try to make the yogurt? also i dont have a source for goats milk anywhere near where i live. can i make the yogurt with store-bought goat yogurt? or can you not re-yogurt yogurt...

(i could get goat yogurt at trader joes)

You might want to read Breaking the Vicious Cycle (Specific Carbohydrate Diet book) before deciding. Also, you might want to look at her website at Open Original Shared Link -- there are links there to SCD physicians, support groups/forums, etc.

Glad to hear the good news!

I struggled constantly trying to gain weight before going gluten-free. Then my body went completely haywire and I started gaining, out of control gaining, while on a low calorie, whole food diet and exercising like a dog. Now, at 4 months gluten-free and doing daily Kettlebell classes, I've stopped gaining, THANK GOD

I still eat low calorie, whole foods, nothing processsed (except the occassional Udi's) and do 35 minutes of hard core exercise everyday. Doc says body is in shock and metabolism is almost dead because of long term malnutrtion. He says give it a year to see a difference. So, i am trying not to stress about being 10 pounds overweight I went from literally skin and bones and looking like death warmed over to slightly plump in 4 months. Go figure! It will all even out, i think. Just give it time.

It is comforting to know I am not alone in all this! Thank you for this post.

Hello All,

I was diagnosed with Generalized Anxiety Disorder 7 years ago (or more). I was put on Paxil and gained about 20-25 pounds over a couple years. Now, maybe because I was getting older (I'm 34 now), maybe b/c Paxil is notorious for weight gain (but i didnt know that then, nor did doctors). I have always been a "gym" person. Nothing crazy but I go 3-4 times a week. Every now and then I fall off the wagon and only go 1-2 times.

Since I gained that weight (couple years ago now) I cant lose it. I switched to Lexapro and still nothing. I have been on Lexapro for 2 years. Weaned off and had bad withdrawal, went back on.

Since being diagnose with Celiac I believe that my anxiety could have been related to this all along. So I am weaning off slowly. I am just about ready to discontinue. My migraines have gone away since gluten free!!! Thats amazing, I struglled with Migraines since I was 11!.

So I hoping that once I get off the antidepressnts and since I have been stablizing on the gluten free diet and feeling better maybe a few pounds will drop. I still go to the gym, prob only three days a week. I have the Gluten Free down. I didnt good for 3 months then cheated in August (rookie mistake I guess) and payed for it. I am now strictly gluten free for life.

Could celiac have something to do with my body not respoding to eating right and working our or is it the antidepressent or is it just the way my body is???

Just was wondering what you all thought?

Hi,

I had to do a gluten challenge before I had my tests, and I gained 15 pounds that for the life of me won't come off. I have been gluten free since late Sept. I can appreciate -- at least in part -- how you feel.

I am giving myself 6 months to a year for my body to readjust. In the meantime, I am eating whole foods -- or trying to anyway -- and trying not to beat myself up too much.

I am no expert, and I do not know a thing about how the meds might be affecting you, but regardless, I would suggest two things:

1- Give your body time to heal, even if you go off the meds. It may take a while for your body to readjust to where you can lose more easily.

2- Eat WHOLE foods instead of processed. There are a lot of gluten-free breads, mixes, etc. out there, and many of them are life-saving yummy, for which I am most grateful, but in my humble opinion, our bodies respond best to foods we were born to eat: Meat, veggies, fruit . . . and watching not to over indulge too, too much.

OKAY, so now that I've said that, let me also say that this is easy to say but not always so easy to do! There's a weird thing that happens to a lot of us. I like to call it the "I can have it syndrome." Here's how it works . . .

Someone offers you a gluten-free cupcake.

Before being diagnosed, you'd seldom eat a cupcake because you're all about healthy eating. However, now that you have been told that you can't eat a-whole-bunch-of-stuff-for-the-rest-of-your-life, there's this thing that happens that makes the cupcake okay . . . not only okay, but a blessing! . . . not only a blessing, but an entitlement! Good grief, you HAVE to eat it BECAUSE YOU CAN!

This may not be true for you, but it is true for so very, very many of us here. What really makes it tough is that many of the breads, cakes, mixes, are much higher in fat and calories than the gluten ones. Ouch!

For someone suffering from depression, it can be even more of a challenge I would guess. I mean, what better way to soothe a soul than to eat? (Not the best or right way, but it sure feels like it at the time). Again, maybe this is not true for you, but oh boy is it true for countless others. I sure know that when I have down days, it's all-too-often all about the food . . . and it was REALLY all-about-the-food back in the days when I weighed over 300 pounds (see below).

The bottom line is that, now that you're diagnosed, your body will heal and you will get better every day. HANG IN THERE. Pray.

I am struggling, too. I know how to lose weight and keep it off. I've kept over 150 pounds off for over 18 years (and proud of it), and I've stayed within a healthy BMI, but now my body isn't responding to my efforts. I've been able to maintain the weight 15 pounds over, without gaining more, which I suppose is a blessing, BUT IT MAKES ME SO MAD I WANT TO SCREAM.

Again, I've decided to just love myself--and try not to scream-- and give myself time. I want the weight loss yesterday, but oh well, that's not happening right now, and I just need to be grateful that at least I now know what is wrong with me.

It will be okay -- I must believe this, both for you and for me, too!

Thank you for this post -- it's a great one. I hope others will respond, too.

PS: Thank goodness you have a diagnosis and you're on the road to getting better. That's the most important thing.

Hugs,

Lyn

Could you please tell me if they do any follow up and treatment, look at related disorders, or do they just diagnose? Thank you.

Could you please tell me if they do any follow up and treatment, look at related disorders, or do they just diagnose? Thank you.

Hi, Ivy:

I had my appointment at U of C today and, as promised, am writing to let you know what happened.

Dr. Semrad ordered another Vit. D (and E) blood test, also more IGA - she asked for one that tests the entire spectrum -- I believe she called it an "older version". She also ordered another regular IGA, if I understood her correctly.

She also ordered another colonoscopy for me -- I had one with another doctor last year, and he wrote "non-specific inflammation" on the test results. She does not like not knowing what the problem might be, and she also wants to check for, I believe she called it "microscopic colitis."

In addition, she asked if I would kindly make myself available for research studies since my case is a bit out of the norm. Of course, I said I'd welcome it.

My colonoscopy is scheduled in January. I'll let you know!

I hope you are doing well. Thank you again for your interest.

Warm regards,

Lyn

Converting cookie recipes from BHG cookbook. Banana bread muffins/bread. Most things that I make or family members make is from 'regular' recipes, just using gluten-free flour.

I finally got rid of all my other flours, and just have this and corn starch in my house now.

You've given me hope! My oldest daughter wants holiday cookies this year very badly, and I'm hoping I can use my old recipes with this flour.

Do you notice much of a difference in the taste?

I just need a moment to vent. I went to a very fancy hotel yesterday in Newport Beach for a luncheon. There were about 500 people there. I knew I might just end up with some lettuce, but i was ok with that. They served me a wheat laden plate. I politely explained that I couldn't have gluten. Got the blank stare. The I explained that I am allergic to wheat. Ok he says, I will be back.

30 minutes later the Captain came by and explained that they were preparing a special meal for me. Everyone else was finished with their lunch when mine arrived. On the plate was:

2 florets broccoli

2 florets cauliflower

2 stalks asparagus

one slice zucchini

2 halves baby carrot

I looked at the plate and burst into tears. It's been one of those weeks.

Thanks for listening, I just needed to vent. Please don't remind me to eat before, take snacks, etc. I know that. I was unprepared for the first time in a long time, and it just sucked. Vegetables made me cry, but undergoing invasive medical procedures does not. Go figure

OMG! I soooooo get what you're talking about!

A few weeks back, I went to a business conference in San Diego. The chef supposedly understood my gluten free needs . . .

At lunch on the second day, they served turkey sandwiches on white bread . . .

When the server came out with my order, she had it on WHOLE WHEAT bread instead.

Like you, I cried, or almost did. I've been following a gluten-free diet for only a couple months. I'm still trying to adjust. I mean, how the heck could I trust that anything they'd bring me after that would be trustworthy?

I became a raving witch with a "B" -- which is not like me. I was with a co-worker on this trip, and I felt quite sorry for her having to listen to my complaints.

It was just a culmination of things at that point.

The night prior I went through gluten-free heck at a restaurant where the manager and chef refused to speak to me (and I was really, really, really nice, I swear!) . . . and the afternoon before that, as I strolled through the restaurants across from the hotel, I went through heck trying to find a restaurant that undersood my needs.

I just gave up.

Thank goodnes, my last night in San Diego, I was lucky enough to go to Ruth Chirs Steak House for dinner. THEY KNEW EXACTLY WHAT THEY WERE DOING -- a great meal! (And the martini I ordered was excellent, too . . . I needed one after that trip!)

Hang in there -- or should I say: I will, if you will!

Sending a hug,

Lyn

About a week is what seems to be the norm for me. HATE IT!

I can't speak to Jules other than I've heard good things about it, since I have not personally tried it. However, I do know that I absolutely love, love, love BB flour and can't live without it!!!

What are your favorite recipes with BB?