thleensd

JER. Perfect. =)

Absurd. She definitely needs a little gluten-free etiquette lesson!

I'm fascinated by this:

>also about wheat deamadization, which is pretty scary, what they do to wheat chemically to make it into a polymer. as if it was'nt scary enough!!

What's the deal with that?

oh im beyond pissed for u- why dont they just write down in our charts that we have JUSTIFIED EXTREME RAGE against the medical system for failing

(it's either laugh or cry) I love this. Maybe I'll email her and ask her to code in JUSTIFIED EXTREME RAGE instead.

I hear what you're saying, Korwyn, but I don't think that the diagnosis of a mood disorder is required to test my nutrients, iron, and thyroid. She could've easily written something that would've been more accurate like "anemia" or even "malnutrition". She's straightforward with me about the system sucking, so she shouldn't try to be sneaky and not tell me.

Went back to my primary care doc to address my ongoing issues (mostly major fatigue, but other left over recovery stuff, too).

I actually like her because she has a background in Chinese Traditional Medicine (though she doesn't use it... but nice to know she's more open minded than most). I think three times in the appointment she apologized for the limitations of western medicine, specifically the idea that doctors 1 - look for markers you can *test* for, ie abnormal blood work, then 2 - give you a pill to make the symptoms better. She admitted there is not much they can do for things that aren't treatable with drugs. She also admitted that just because an individual is in the "normal" reference range, it doesn't mean it is "normal" or healthy for them. Of course, then she said if it's in the range there's really nothing they'll do about it.

She did order the labs I asked for to check on the things I know I've had a history with (Iron, D, B-12), and rheumatology and inflammation markers... as well as a CBC.

She also (reluctantly) signed the DMV request for temporary handicap permit for those days I just can't lug all of my stuff a mile.

She supports me seeing a naturopath and acupuncturist (though she said she wouldn't give me a referral for the latter because she *always* gets her requests rejected - need to see the physical medicine guy for that). She said she didn't know much about supplements, but if they make me feel better I should take them, citing "there's just not much research....". Yeah.

Then she did something that made me angry. They give you a printed summary with diagnosis and instructions when you leave. I know the docs are pushed to give a diagnosis with EVERY visit. She wrote on my diagnosis "Celiac Disease" (duh) and "dysthymia" (huh?).

So, while waiting in the lab to "donate" blood, I pulled out my smart phone. Dysthymia is "A chronic type of depression in which a person's moods are regularly low. However, symptoms are not as severe as with major depression"

Open Original Shared Link

So, here's my issue: She didn't MENTION dysthymia or depression. She didn't ASK how my moods are. She didn't ASK if I'm low or down or if I have any depression symptoms. Not ONCE. According to the site I just linked, "The main symptom of dysthymia is a low, dark, or sad mood on most days for at least 2 years. In children and adolescents, the mood can be irritable instead of depressed and may last for at least 1 year." She certainly didn't tell me what to do about it! I did cry a little in her office. But that's what happens when I talk with a doctor about my medical troubles (that they routinely can't help). Been that way my whole life.

Do I get down? Yes. Am I frustrated with my symptoms and issues? You betcha. But, then I take a deep breath, and go do something fun. I've been screened for depression - I've seen a shrink to deal with the PTSD of the whole ordeal - he agrees that I'm not depressed. I would certainly like to know if I was, and what to do about it.... but why the #$%^ would my doc write something like that down and not even tell me about it? The more I think about it, the more it upsets me on so many levels. If there isn't sufficient evidence that I have it, don't write it down. If there is evidence that I do, talk to me about it, for crying out loud!

So, I throw my hands up. I'll see her when I need blood work, paperwork or break my wrist.

I'm going to go call that naturopath I keep meaning to call.

Not fear of heights, but yes to both anxiety and balance issues. Both are getting better. Before gluten-free I was having a hard time riding in the car (anxious) and I was prone to walking into walls from time to time

So, yeah... I could see that connection.

Just had a little mini emotional *moment* in the kitchen when there was NOTHING I wanted to eat. So, I'm looking for ideas for quick snacks... but there are restrictions.

-Since I need to eat a late night snack/meal (or I wake up in the middle of the night with anxiety and dizziness), it needs to have some lasting energy/protein. I can't just have a bowl of cereal or rice - too much sugar low when it wears off.

-I need to go kind of easy on dairy. Can have some, but not a lot, and not by itself

-No corn (I try to avoid xanthan gum, too)

-No oats

-I try to stay away from pre-packaged/processed stuff

-Easy to eat and digest (no raw veggies)

-Comfort-type food is best-I'm happier if it's warm, but that's not necessary

-It can't take forever to prepare since I don't want to wake myself up again before bed.

-No microwave at this time!

Things that have worked in the past that I'm tired of (or don't have):

-omlette/eggs

-rice/beans

-potato chips/sour cream dip

-roasted almonds

-leftover soup

-guacamole with whatever I feel like dipping in it

Ready, go!

I sat down with guy at the local MAC store- and asked him a ton of questions. He got out his giant ingredient book, but that was overkill. ALL of their products clearly label if there is gluten! They aren't all gluten-free, though. One of their mascaras has barley in it. Really? Barley? Just look at the label and it will use actual plain English. Not all of their lipsticks are ok last time I checked... but stuff changes.

I've read that the oil-filled soft-gels are better than dry. I take Country Life brand, 5000 IU (D3) per day. They make smaller doses, too. Certified gluten-free.

When I was super deficient, I got a prescription for 50,000 IU once per week. It looked just like the soft-gels I take now. Did that for eight weeks.

Hang in there. It's been two years since diagnosis for me. When I was at my worst I needed help eating and getting up to use the restroom.

As I progressed, there were little milestones... I could wash my own hair. I could take a shower without a nap afterwards. I could walk down the street. Then around the block. I'm not 100% yet... maybe 50 or 60, but I love the good days (hours, minutes).

Like eatmeat said, many (most?) people need to figure out what works for them in addition to gluten-free. I'm learning to pace myself. Not something I do naturally!

Patience is hard. I struggle with it daily, but I'm getting better. Acceptance without giving up the fight to get better is a fine line to walk, but keep at it. I've found reading and sharing stories here to be very helpful in my healing.

Best.

Wow, thanks! WIth the colors and the lighting in here right now (screen turned down because it's dark), I couldn't see the lettering! =)

Hey. When I was diagnosed I had read somewhere 6 months to 2 years. It's been more than 2 years for me and I'm still not better. On the 1-10, 10 being just kill me now scale (that was a good one, by the way), I'm between a 6 and 8 depending on the day, now with fleeting moments of "yay, I feel normal right now!"

I also am struggling to maintain/gain weight. There is a ton of info out there on it, much of it conflicting. What I've found, personally, is that it isn't helpful just to eat a ton of meat and potatoes and hope it sticks. The most reliable weight gain is adding muscle - so I need to do gentle muscle-building exercises. If I do too much cardio without enough calories (or enough BALANCED calories), I lose what I've gained and my body starts tapping my muscle stores for energy to burn.

Eat frequently. I imagine this is especially true with bypass.

Oddly, I found that if I didn't eat enough veggies and healthy stuff my body would get bogged down and not function well...so, calories aren't everything. Stay away from processed stuff as much as possible.

I drink a lot of smoothies - fruit with yogurt, or veggie smoothies (high speed blender a must for this). You can even add avocado or nut/nut butters. For a lot of calorie bang for my buck I shoot for foods that are calorie dense (like avocado and nut butters!) and try to get plenty of variety within the foods I eat.

I can't report that I've gained a ton of weight, but I'm not losing any more and I have glimpses of gaining (until I get too active again. =

There's a big support group that meets in SD, and make sure to check out an awesome site, Open Original Shared Link

Cheers.

Not a wimp. You gotta do what you gotta do.

I toughed it out for a long time which made my recovery slow, I'm sure. Probably should've quit sooner... Now I still can't work. It's different for everyone.

Take care of your body. It's the only one you get.

. . .The irony of all this? One $149. genetic test confirmed what I already knew.

There needs to be a better understanding of this disease. For starters, it is NOT an allergy (I cringe when people say that) and it can be devastating and someone doesn't even have to have the tell-tale gut/bowel issues. Silent celiac is frightening! Even after diagnosis, doctors (and others) say "oh just avoid gluten, you'll be fine"... they have NO CLUE what's involved in recovering full body and brain function! NO CLUE what body systems have taken a hit and what vitamin and mineral deficiencies and bone loss we have suffered.Even after DX, I had to go back and TELL my doctor what tests to run to find the folate deficiency and loss of bone density I had! I'll be in physical therapy for a year to regain lost muscle mass and strength and mobility.

For pete's sake...who's the med school grad here??? Again, if I had not READ so much, I still would be floundering around, in a wheelchair or a mental health ward.

But only a "gluten-savvy" doctor is going to recognize the symptoms and that will only happen if there is more emphasis on EDUCATING them, instead of coming up with new drugs or vaccines that will NOT solve the huge problem in this country--a nation of sick people who are mainly gluten intolerant.

Just my two cents! sorry, guys....I don't know where all that "rant" came from....

whew......

Preach it, girl! Seriously, this is so familiar to me. Gah.... (Curious how your physical therapy is going, or if you're still in it. I go just about every week.)

I'm fascinated by this thread in part because of how emotionally so many of us respond to the modern medicine quick fix. Don't get me wrong, if I have appendicitis or a broken leg, I'll be first in line at the doc's...but I've been burned by the influence of drug-pushing physicians. Those drugs made me worse more often than better. When I was at my worst right before I was diagnosed, my doc don't me the GI department "wouldn't even talk to me" unless I took Prilosec for two weeks. Since I wasn't assimilating nutrients properly at that time (read: starving), that "safe" drug pretty much made it impossible for food to break down. Fortunately, I only took it for a couple days.

There would have to be a LOT of explanation and testing before I would even BEGIN to consider a "vaccine" like this one.

While I'm sure that there are a lot of medical researchers out there that truly want to help, it's not the individuals that are the issue... it's the surrounding system and where the money comes from. Then docs are rushed through their patients each day and pushed to give them quick fix drugs, knowing very little about nutrition (unless they personally choose to research it).

Is the non-google search still available? The only search I see is "search forum via google", and that doesn't have options like the other. What am I missing?

I am diagnosed celiac with severe malabsorbtion issues. Anemia-being the worst. I am hoping you may be able to help- I started to exercise recently because I have become very weak. Within two weeks of starting I gained about 10 pounds and my period went awaycompletely.Also got a very intense yeast infection that was difficult to get rid of. The physical exercise is very difficult as my blood count recently was 26 and ferritin was 1.4. I stopped because of the missed period and weight gain. Two weeks after I stopped I have had a VERY HEAVY LONG(14 day) period, dizziness, nervousness. I have dropped about 5 pounds and I have joint pain mild shoulder pain- what in the world is going on. Have you experienced this? I feel like I am an old person. And my doctor doesn't understand this disease.(military spouse) HELP!!!!

-You're definitely not alone.

-You'll have to learn more than your doctor, because they probably won't go out of their way to do so.

I had similar iron issues (ferritin below 2, iron in the teens). Your doctor should be saying to you "how are you still walking"... and shoving iron at you. The only way I got mine into the borderline normal area was liquid iron.... the stuff is nasty, but it helped. Also read up on iron absorption. Things like calcium taken with it inhibits it. If it is stubborn, some people (here even) have gotten IV iron.

I can't really tell by your post, but inferring from your join date, you've been gluten-free over a year and are just now starting to exercise because you were too weak? That's just a guess, but I can relate to that, too. I can only speak from my experience, but for what it's worth, I find that if I push myself too hard at this point, my whole body gets wacky. I get skin infections, anxiety and more. If your iron is low, you're probably low on some other things as well (maybe D and B12? Those are common)

The body has fascinating ways of sending us messages (to which I often respond "what the @$#& are you trying to tell me, body!??") I wonder if it could be your body's way of telling you to slow down a bit and be gentle with the exercise? Take your vitamins and supplements, be diligent with your food, and keep looking. The answers are out there.

Best.

I for one am of the mind set that the FDA doesn't protect the consumer as much as they do the big business so it wouldn't be a shock if it doesn't have to be listed.

Agreed. I feel that way about a lot of organizations! =)

(Diagnosed a month ago - gluten free for 3.5 weeks)

I feel like over the last few months I've been having some problems. I often get side-tracked while telling stories and forget my place. Once I stopped talking mid-sentence and couldn't remember what I was talking about. Sometimes I also don't get the order of words right in a sentence (I'll flip the noun/verb and then correct myself), and it causes me to say stupid things. It's not a major issue for me and only happens occasionally, but it's annoying and embarrassing.

I'm thinking that this is what everyone calls brain fog? Or who knows, maybe I'm just a little loopy or tired - but I feel like it's just been happening over the past few months. If it is brain fog, when does it go away?

Yeah... sounds like the brain fog curse. =) I had a case of it for a good couple years before diagnosis (my friends joke about those being my "lost" years, since I can't remember much from that time!). I still have trouble with it, but it's getting SO much better, and I'm "normal" for longer periods of time. I still have moments where I'll just stop mid sentence... "what was I talking about?" Some people find relief right away within weeks... for me it's been two years. Try to take it in stride and allow yourself to find humor in it.

I've also noticed it's worse when I'm tired/haven't eaten in a while. I need to eat much more often now (and if you're low-carb from the lack of gluten I guess that's kind of expected). Or, sometimes it's just one of those days.

Your body working hard - it is in the process of healing... that will throw some things off.

Hang in there.

It's not just you. It's been two years and two months for me. I've been very strict about my gluten-free, including non-food products... Also eliminated corn, soy, nearly everything artificial or overprocessed, sorghum, and experimented with eliminating quite a few other things.

That being said, I was pretty bad (hospital stay) by the time I was diagnosed. I've been to every western and eastern doc I can afford, and now I'm just trying to eat as purely as possible, and trying to balance rest with getting stronger. I'm putting my fingers in my ears and saying "LALALALALALAICAN'THEARYOU" to the word refractory.

I don't have much to offer, just know you're not alone. Keep your chin up, and keep searching for answers.

I went shopping with the intent of buying millet flour... they didn't have any, but I walked out with Buckwheat Groats and Millet.

I have no idea what to do with them!

Ideas??

AH HA! Found a statement with some substance for us (um...sorta)! Check it out:

"The main hazard of creating novel proteins is their effect as a potential allergen. While TG itself is non-allergenic, there are studies that show that gluten can be made more allergenic if treated with TG. Gluten-free cereal products can contain a small amount of gluten. That small amount is below the threshold of activity for Celiac patients. If that small amount of gluten is made more allergenic by TG, there is the possibility that a “Gluten Free” product could suddenly pose a hazard*. Interestingly, there are other studies that claim that if gluten is reacted with mTG under the right circumstances, it can be rendered safe for consumption by Celiac sufferers**.

*(Microbial Transglutaminases Generate T Cell Stimulatory Epitopes Involved in Celiac Disease, E.H.A. Dekking, et al, Journal of Cereal Science 47 (2008), 339-346.

**Transamidation of Wheat Flour Inhibits the Response to Gliadin of Intestinal T Cells in Celiac Disease, Carmen Gianfrani, et al. Gastroenterology 133 (2007), 780-789."

...so, inconclusive, but at least someone at some point in time has considered it.

That's from Open Original Shared Link

Corn is a real challenge. Casein is milk protein, and as such is an allergen that must be disclosed on the label in both Canada and the USA.

"Unlisted ingredients" is a myth, although one with some basis. Everything contained in a food product in the USA and in Canada must be accounted for in the ingredient list. That is the law. There are some terms which are legally permitted that are ambiguous. As an example, malted barley (gluten) can be hidden in "natural flavor" although it almost never is.

In the US and in Canada, wheat is an allergen that must be explicitly labeled. Oats and rye don't hide. The concern is the possibility that flavor or seasoning might contain hidden barley.

I am quite familiar with the US labeling laws and the difference between most of the grocery store vs. meat (and who is responsible for the labeling: following the statutes of FMIA, PPIA, EPIA, etc). I've spent lots of time reading about them all...

But, you're saying that if they use this meat glue, they'll list it? I think the whole idea behind this was that they can use it and not tell us.

Meat products sold here (California) do not always list ingredients on the package - right or wrong, it's the case. At our local Henry's they have a rack full of meat (not in the butcher shop, but wrapped up) that is packaged that just says something like "fajita meat" or "parsley chicken" and when you look at it it is meat and veggies, seasonings, maybe breadcrumbs or in a marinade - and the ingredients aren't listed, nor are they obvious. I asked the employee about it and he offered to go get the ingredient card from the back. Nowhere on the package does it say what's in it. Same experience at bigger grocery stores. I assume a point of purchase loophole...but it's a very large loophole. (Off topic, but I started really noticing it when I found an unintended piece of parsley in a package of chicken!)

I'm not sure if "meat glue" is applied at point-of-purchase, or how that works.

I'm at the point in my life when I should be off carving my way through life, figuring our what I will do with myself, what my talents are, ect ect, but I'm to ..paranoid, I just can't think of anything that would be easy to manage with so many things I have to avoid, the best part of all this is I actually wanted to give being a cook a try at some point lol specializing in...pastries -.-

So what's your job

what do you do, how's it go for you?

did you lose or quit a job you had pre diagnosis?

Yep. Wrecked my work life. I had a pretty crazy job actively working 8-12 hrs/day working with kids. I'd been working at my position 8 years when I got sick, missed an entire month of work... all of my sick leave and vacation time. I found another position where I had an assistant, but felt terrible because she always had to pick up the slack when I was down. I'm still not healthy (tons of fatigue, etc), but now I can work for slightly longer stretches... but not like before. I TOTALLY understand the "what do I do now" dilemma... I've decided to allow myself a little experimental time - kind of like college when it's ok to not know what's next. I realize I'll have some debt to pay off, but finding a new career (at least for the next few years while I heal) is a big deal!

Now I'm setting my own schedule and teaching music lessons. If I came across a couple million dollars, I'd open a local gluten-free restaurant and hire someone to run it... then I'd go eat there for free every day

I have added to the title to indicate that the topic is controversial. While I understand your perspective, even bad publicity based on misinformation is worthy of discussion.

Better that we see it and rebut it than try to ignore it. My thought, anyway.

Thanks =) It is appreciated. And, of course "bad publicity based on misinformation is worthy of discussion". That made me chuckle, though I agree (thus my active discussion on it)

The article came up on my google news alerts and I see a lot of people blindly tweeting it/etc, so that is my concern. As you know, many people read something like that on the internet, don't research it, take it out of context, and next thing you know I'm ordering gluten-free meal at a restaurant and they give me a vegetarian meal.

Marz - To the "only in processed meat/sausages" comment... not so! Watch the video/etc and see the glue in action.

What worries me is the maltodextrin and casein... I'm trying SO hard to keep corn out of my diet. Much harder to avoid than gluten! ...and the whole idea of unlisted ingredients. Ugh.

BUT- i CAN say- that 75% of the time i canNOT eat Chickpeas at all- they will give me painful cramping. SOMETIMES i can survive a little hummus- but regular chickpeas NEVER

Wow, that's really interesting.... I'm not sure I've eaten whole chickpeas before (that is, in my "new life" ...since Diagnosis). I didn't even consider that since I eat hummus frequently. Now I'm trying to remember if I have. I eat beans nearly every day... and am fine with lentils. Can you eat beans? I've been ok with Hummus, but don't eat too much at once. My gut is still pretty sensitive, though (after two years! ugh!). If I eat too many nuts or sunflower seeds I get cramps.

I'm still cranky and "off" from yesterday though. Maybe I should make a t-shirt for these days ("speak to me at your own risk" or something).

black list: cardamom pods, cumin seeds, whole chickpeas....