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Member Since 28 Feb 2012
Offline Last Active Oct 13 2012 06:18 PM

Topics I've Started

Good Greens Bars - Labeled gluten-free, But Not Really

10 October 2012 - 12:49 PM

Just wanted to share something I learned to help others...

I used to be enamored with Good Greens bars. They were my go-to food for portability. I swear, on my honor, that they used to be certified.

A while back I noticed some constipation with them, but figured I just wasn't getting enough fiber. Then, I had a PB&J bar, and noticed it was disgustingly sweet. I asked my husband, "Do these taste different to you?" He said, "I dunno"

He just called me from the grocery store to say that the box has a "Produced in a facility with wheat" statement. I went to the kitchen, pulled up the box, and sure enough, there it was. Also, the "Gluten-Free" is no longer the black and white certified gluten-free circle, it's just a generic grain pic with "gluten free" under it.

Looking closely at the ingredients, it has "grain dextrins" -- not sure how I missed those before; they don't list the dextrose source -- and "certified gluten free oats" -- that explains some things, for me at least!!

I am going to write the company to see if their formulas and certification status has indeed changed, that way I'll know if it's them or if it's me. When I first ate them, I was newly gluten free, and as time goes by, I seem to be getting more and more able to detect trace amounts by my reactions.

Just want to encourage you to read your labels of your Good Greens bars if you eat them.

Behavior Is The Biggest Manifestation Of My Disease: Anxiety, Trichotillomania, Collect...

10 October 2012 - 06:46 AM

I just want to put this out here for other people who may be struggling with these issues: You are not alone.

I have been a hair-puller (trichotillomania) for all my adult life. I get intense itching and feel that the only relief I can find is to remove the hair at the source of itching. When I first went gluten-free, I noticed that the intensity of the itching and the urge to pull went away. Then I learned about DH. When I'm accidentally glutened, the bumps on my head come back, and the urge to scratch/itch/pull is uncontrollable. I don't get any relief, and by the time I'm done ravaging my hair, I've got a bald spot.

Glutening also makes me a demon-possessed acquirer of things. I will go on shopping binges. It doesn't matter what it is...shoes, scarves, pens, whatever comes up as a need at the moment turns into a day-long mission to find as many of that thing as I can come up with. A couple days later, I look back, and I'm like "what was I thinking?" When I don't have gluten, I'm fine, and can easily use "executive decision making" to determine what is really needed and what is not.

My dad, who also had undiagnosed celiac disease, was the same way. When he died, and we cleaned out his drawers of things, we found collections of watches, pens, eraser refills, tie tacks...You name it...there wasn't just one, two, or three of things...but dozens. And we also heard that his brother did the same thing, but his penchant was for coffee. He had chest freezers full of coffee imported from Costa Rica.

My anxiety levels pre-diagnosis of gluten sensitivity were off the charts. I would stress at everything, My heart rate would accelerate to 180bpm for no apparent reason. I was diagnosed with dysautonomia, but Ativan would bring my heart rate down and my thinking more clear. I had an overwhelming sense of dread at everything.

Depression? Don't even get me started...No amount of Lexapro or Amitriptyline could lift me up....

Migraines were the worst. It was as if my brain was dying one quadrant at a time. The fact that low cerebellar volume has been associated with celiac disease is not surprising to me. I can actually feel my brain being killed when I'm glutened.

I would get dizzy, unable to walk a straight line.

Fibromyalgia? Intense. Everything hurt. All the time.

After being 6 months gluten-free, I am a new person. I can exercise again. I don't go in the the blank stare/anti-able-to-concentrate state. But even the slightest amount of cross-contamination sends me into hell. Bumps on my head, a feeling of worthlessness and hopelessness, I start packing things away like a squirrel saves nuts, I can't focus, and I get migraine more intensely than I have before.

I don't think there is enough research being done on the neurological impacts of gluten. I believe in my heart of hearts that the damage is just as severe, if not worse, than damage done to the gut in celiacs. I am convinced that so many of the behavioral problems we see in society today are gluten-related. ADHD, autism, insatiable appetite (hence obesity), OCD, chronic pain, Alzheimer's etc etc....

So if you are suffering, know that you are not alone. Stay away from gluten, eat lots of green leafy veg, fruits, and you will be fine.

Fiber (Metamucil, Heather's Tummy, Etc)

10 October 2012 - 05:45 AM

Hello - I know I've seen posts here before about the best fiber supplements for celiacs, but I can't seem to find any current ones using search! I'm only coming up with early years...let's get a topic going for late 2012?

Yesterday, hubby brought home some Metamucil capsules labeled as "Gluten-Free" but the gluten-free has an asterisk footnote *less than 20ppm. I have had reactions to these trace amounts in the past.

Online, I found some products: 1) Heather's Tummy acacia fiber 2) Now brand psyllium with apple pectin - Does anyone have experience with these?

Also, are there other recommendations? Is anyone using Metamucil caps or any other brand successfully?

Please Help - Endomysial Ab Iga Results - Should I Eat Gluten For 6 More Weeks Until Bi...

28 February 2012 - 01:12 PM

I have been suffering with many things intensely over the past 5 years. I used to be fairly healthy except for chronic allergies and sinus problems, then suddenly I was hit with 60 pound weight gain, migraine, fibromyalgia, intense diarrhea alternating with constipation, depression, anxiety, arthritis, cancer, on and on. I've seen 9 specialists (including a GI) who never once suggested celiac. For what it's worth, my father became lactose intolerant later in life, had diabetes, got really fat, became bowel incontinent with diarrhea, then wasted away, etc. Looking back I think he was an undiagnosed celiac.

I read Dr. Davis' book "Wheat Belly," and avoided wheat for a few weeks. I felt generally better, then reintroduced wheat. Within 12 hours I had a migraine, and within 36 hrs. I was on the toilet at least 5 times with the telltale stool (you know which one I'm talking about.) I continued to avoid wheat and gluten as much as possible until my appointment, because I didn't want to get sick again.

I made an appointment at the Cleveland Clinic to talk to an Immunologist. (I didn't realize this was considered the domain of GI. It's an autoimmune disease, after all). She ordered a blood panel, which came back abnormal. (I'm mad, because I told her I'd been avoiding all wheat for 3-4 weeks, and she said that wouldn't influence the results. I didn't know if she was running a genetic test or what. Here it was the antibody tests, which ARE influenced by gluten consumption. Grrrr.)

Are these indicative of Celiac with a great degree of certainty? What about the fact I had been gluten-free for almost a month? Here are my results:

IgA - 138
Endomysial AB IgA - 1:20 - ABNORMAL
Gliadin IgG Abs - 14
Gliadin IgA Abs - 5
Transglutaminase - 14

Today I heard from the Celiac Disease Ctr (Chicago) via Twitter that no blood test will confirm Celiac, and that I will have to resume consuming gluten for a biopsy.

I couldn't get an appointment with the GI until the end of March (and that's just for the initial consult). I'm sure the biopsy would be another 3-4 weeks on top of the month I'm already waiting. I cannot stand the thought of dealing with this sickness for another two months.

I am so tired of not getting good information. Should I just tough it out, and keep eating gluten until I get the diagnosis verified and in writing? Are the "benefits" of documented disease worth it? Are there amounts I can eat that will get the positive results without sending me into feeling like death? I'd appreciate anyone's advice, experience with these lab results, and most of all, the name of a good doctor in Cleveland. Thank you! PS - Nice Domino's Pizza banner ad on the left. :-< Sheesh.

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