KathiSharpe

Yanno if it was minute or trace amounts of peanuts or tree nuts and people were dropping dead, they'd be quick to adjust their labels ::fume::

I'm all for the gov't staying out of private enterprise and all - but IMHO food labels should be tightly controlled and labels should contain ALL information.

So I have a question. Actually, three. Or four. Or six.

#1 - if my new doc is unwilling to dx me on the spot and wants to send me for tests, what specifically do I need to ask for (to make sure she actually runs all the right tests!)

#2 - I see the big ads to either side of the forum Is the genetic testing worth doing? And I think there was an ad or discussion on stool sampling resulting in diagnosis when blood and even biopsy failed?? These all seem to be done through private labs. Are the same tests done by conventional labs with doc's orders? Will insurance cover this sort of testing?

#3 - I keep seeing people talk about iGa and iGg (hope I got the right letters capitalized?) and how if your body doesn't make these, or make enough of them, the blood test can be a false negative.

I googled it and came across something confusing about the relationship between these (antibodies??) and the immune system and that people who are low in these also have difficulty fighting infection - ranging from serious illnesses to just catching bugs that go around - and this inability to fight off infection includes difficulty in mounting a fever.

That'd be me, folks - I catch every little bug that goes around and I don't run a fever above 99.1 even with a raging strep throat. Normal body temp ranges between 96.6 and 97.0. Very hard to convince a doc that you have a fever at 98.6!

So is what I'm reading correct? Or am I extrapolating too much out of too little? (and if that is right, does eating gluten-free resolve the immune problems?)

If so, it seems likely that this may be a part of my problem - and would answer why the blood tests were negative a couple years ago.

Raw meat should have no gluten. What made you think it does? Frozen chicken in parts often has broth added to it. It will say so on the package and the ingredient list will say the contents of the broth. I've never heard of other raw meat with gluten additives. Can you tell us what to look for?

When I go to the store tomorrow I'll look to be sure - but I'm 99% sure both (some) raw and (lots of) frozen meat has the stuff in it. Chicken, pork, and beef (plain fish AFAIK is safe)

What you're looking for is any meat that has "broth" or "tenderizer" or is "enhanced" - sometimes an ingredient list is provided, and sometimes not (sometimes it just says something like "3% broth" or something stupid like that.) You can't necessarily believe an "All Natural" label because, well, gluten is "natural" after all.

There's one major brand of chicken that does not have this - Tyson maybe? I don't want to say without checking - and the Food Lion frozen chicken I just unearthed in the freezer doesn't seem to have anything evil added. But when I was gluten-free before I actually gave away a whole chicken I'd bought (and I'm 99% sure it was fresh!) that had added gluten.

The NY strips (which came frozen) have a "ficin" tenderizer and an "enhancement of modified food starch, sodium gezundheit-ate, lemon powder, and other I'm-sure-wonderful things that Ken can eat

Ah! I know where the "fresh" comes into my brain. Aldi's pork chops. Don't know about currently but they used to contain gluten.

Say, a moderator might want to split this post and the last off into a separate thread?

What meds are you doing without? Some meds are dangerous to stop suddenly. Some companies have programs for folks that can not afford their meds.

It's my progesterone. We (well, I - hubby doesn't know) chose between that and his diabetes meds. Unfortunately it's something that's compounded at a local pharmacy, so there's no assistance in getting it.

If this is DH it will resolve if you cut gluten out of your diet.

Yeah no kidding!

You also will need to use uniodized salt at first.

?????????????? That's a new one - explain? (Is sea salt "iodized" - that's what we use)

If seeing a derm is not possible then you may want to do a trial of the diet.

That's what I'm doing right now. I officially started yesterday (tho I think even the salad I ate at the restaurant prob had gluten in it Who the heck puts pimientos in feta cheese anyway?) My poor hubby thinks I'm going to starve to death...

I'm actually doing the trial in the hopes of seeing *dramatic* improvement before seeing the endocrinologist (2 weeks). If this time is anything like last time, day after tomorrow I should be seeing some results!

If she's willing to simply diagnose based on experience, well, there you go. If she's not, but she's willing to do the tests, it won't be much to go back to eating gluten for a couple weeks, then have the tests done.

If she's not willing to either dx or test, she's fired

This normally wouldn't be in an endocrinologist's purview, but all of my endo-related problems came about after I started eating gluten again, after being told I absolutely positively couldn't be celiac (based on blood test).

I don't think it's psoriasis - I've seen it before on others and this looks nothing like it at all. Last night I got burning/stinging/itching in my toe and heel and it feels like there are blisters forming there.

The callous on the tops of my toes seems to be a different thing - it doesn't "do" anything but look ugly.

It also occurred to me last night that I've got 4 places on my hands that are "blisters" that never go away. They periodically start itching like mad, then burning, and I pick at them, and they go away, only to return. I thought at first they were warts but they really look nothing at all like any wart I've ever seen. :shrug:

I really can't afford to see a doctor. We're usually not this tight financially but I'm doing without medicine this month so I can afford to see the endocrinologist on the 18th.

Some foods you can only find (at a reasonable cost) in bulk bins. Around here, yellow corn grits are one such food (seriously YUMMY! and gluten-free).

I would go have a heart to heart with the manager. See if you can schedule some time to talk with him. Bring a short article about the dangers of cross-contamination. Ask if it's possible for you to buy the food BEFORE it's added to the bulk bins, or if amounts could be set aside for you, or if you could just order bulk quanities (so they order 2 boxes of nuts instead of 1, and you buy 1).

Another possibility is to get together with other like minded gluten-free folks in your area and form a cooperative, and use United Foods or a similar company to deliver.

After reading through some of the threads here, I've noticed that apparently before a biopsy you need to have been eating lots of gluten. Is that true for blood tests too? I wasn't even aware of what had gluten in it or didn't prior to the test, plus I was tested for glucose/insulin at the same time so had to fast for 12 hours prior to testing. Would this have effected the results at all?

Most people have to try really hard on purpose not to eat gluten. If you've been eating a standard diet that fairly regularly has bread, pasta, breakfast cereal, pre-packaged meats*, McDonald's, candy bars, that sort of thing - it'll show up.

Besides, if my understanding's right, if you'd gone gluten-free before any tests, and the tests showed intolerance, that makes it more likely, not less. Going gluten-free can produce a false negative; I've not heard of too many false positives for any reason.

* on the meat thing - I'm discovering that most meat you buy at the grocery store these days has gluten added to it. So I'm looking at a whole freezer full of meat that I can't eat.

Oh - make sure the supplements the doc gave you, and your meds, are gluten-free.

So here's what I'm wondering about.

If a radical dietary change (gluten-free) results in the eradication of symptoms and alleviation of problems, how essential is it to actually pursue a diagnosis?

(In other words, if you eat wheat and get sick, but abstain and get better, it doesn't take an MD to say, "Don't eat the stuff ever again")

Would it be wrong to simply say that you're diagnosed as having gluten intolerance when you're the one doing the diagnosing based on experience? (You could always say you were diagnosed by one who is a knowledgeable expert in such matters!)

I can see where some people would need an official dx - for example, college students forced to eat on campus - but if, say, you were admitted to the hospital couldn't you simply tell them, "I require a gluten-free diet"

If you were allergic to nuts and told them so, they wouldn't bat an eyelash, would they?

Thoughts?

Time to fire your doctor.

A bit over a month ago, I got what I thought at first was a piece of glass in my foot. Then I thought it was a bite. It swelled up pretty awful, localized to a small blister-like spot (but it was harder than a blister, if that makes sense). It itched to the point of madness.

Then it burst, and since then all the skin has fallen off the ball of my foot. It periodically starts itching again, and almost looks like it's going to form another blistery-thing; but before it does, the skin starts peeling off again! The other foot is unaffected.

But on both feet, I also have huge callouses building on top of my toes (it's not from shoes; I rarely wear the things )

Does this sound like any sort of gluten reaction?

I would go and see a dermie about it, but our income is preventing most docs and meds right now

The point is if Whole Foods has the gall to charge us $10 a loaf, I think it should be fresh.

If WF is going to charge $10 a loaf, it really should be gold plated.

Just sayin'

Any chance you can homeschool?

Its not a case of 'him' believing 'me', its the other way around. I cant see anything in my bloods which indicates a problem, but that is what he is using to diagnose me. I feel he may just want all of his patients to be gluten free. My question is, can anyone else see a problem with these results?

Here's a question for you - what's stopping you from going completely gluten-free for, say, six months - just to see if it helps your symptoms?

If your only reasoning is not trusting the doctor, why not ask for a second opinion - get a referral to a GI who specializes in gluten-related troubles?

Or, would it hurt just to humor him and give it the ol' college try?

I think it's fair to say that most people with celiac or gluten intolerance will see a reduction or even cessation of symptoms in that time frame, as long as they follow a strict diet. I think it's also fair to say that most people who do not have celiac or gluten intolerance will see little to no change in symptoms over the same time period. In other words, if gluten is your problem and you completely remove it, you should see some sort of tangible change. If it's not, you won't. (someone correct me if my logic is wrong, please).

The reason I'm going back to gluten-free - regardless of whether I ever get a diagnosis - is because my thyroid and hormones have spun completely out of control and no one can tell me why. It only did that after I returned to eating gluten after the doc told me I didn't have celiac disease. In the process I've gained 80lbs

My research is showing links between gluten intolerance (in its many forms) and thyroid disease.

:::hugs::::

You might call the pharmacist back and ask him if he'd be responding differently if it was your relative's lawyer calling to report your death and a lawsuit...

Then you might cheerfully fill out the paperwork to file a formal complaint with Those Who Govern Pharmacies.

We should have the right to be safe (or as safe as possible) in the medicines we take.

That said...

I once had the pharmacy manager at my house with replacement drugs at 9pm because they'd filled a prescription with a drug that could kill me. The pharmacist had seen the flag, too :shrug:

It PAYS to watch these people because they surely aren't going to watch out for you.

Back when I made gluten-free bread often (and will do again, very soon), I froze my own bread. Doing the whole loaf made things awful, even if sliced! So, I made 2 loaves at a time, sliced them, and put it in bags, 4 slices to a bag. That way I could only take out what I needed, it would thaw quickly, and none was ever wasted or re-frozen (or chiseled!).

This also makes lunches portable - pack the bread with a small tub of tuna salad or PB&J.

Wow - it sounds like both you and your son have EDS, Heather.

EDS is a disorder affecting the collagen, which is the "glue" that holds joints and tissues together. A gluten connection seems to make sense because proper nutrition/absorption is needed for the body to make the stuff properly. (which leads to "which came first, the chicken or the egg" type "can it be reversed" questions)

EDNF is a great organization - they can likely help you to resolve the "arthralgia" vs. "eds" question if necessary, and help you find a local specialist. (If you're in North Carolina, Dr. Koman at Baptist Hospital ROCKS )

The #1 thing with EDS as I'm sure you know is joint protection. Don't let your son show off - he'll regret it later in life! If the fingers are that hyperextensible, look into doodads called "silver ring splints" - insurance covers them (sometimes you have to fight, but they WILL cover them!).

Wanted to add re: genetic testing -- EDS is a genetic disease. It comes in several different flavors (the docs re-classify them all every couple of years, based on new research and a need to keep things interesting). Some types are dx with a genetic test, others (including types I and III, the main "hypermobility" types) are dx by observation and ruling out other diseases. You may hear that EDS is deadly - the main risks for the hypermobility types are the aorta and uterus rupturing - both fairly uncommon. Screenings should be done periodically, as well as visits to specialist eye docs and dentists.

If you're looking to dress up plain ol' white rice, get some good basmati rice and rinse well (at least 3 times). Melt a knob of butter in the pot and add the rice, and "fry" until all of the rice is golden with butter and is starting to look a bit cooked. Add the water (2:1 ratio to the rice) and cook over medium heat, covered, until "holes" appear in the top. Don't stir it while it's cooking.

At the butter stage, add in any of the following: garlic, minced onion (or any veg), tumeric, whole cumin seeds, sesame seeds. You can also use saffron, but be absolutely sure you're getting the real thing!

You can also make Jamaican rice & peas ("peas" are kidney beans in the US) - Drain the liquid from a can of kidney beans into a bowl. Put the beans in the pot. Rinse the rice and add it, too. Then make a 2:1 ratio of liquid to rice, using the bean "juice", coconut milk, and water. The more coconut, the better! I add about half of a scotch bonnet pepper, but if you don't like hot stuff (and I do mean HOT!) you can leave it out or substitute milder seasonings. It's good as a side dish to any meal, or by itself for breakfast. If you want a one-dish meal add some cut-up chicken or pork or pre-cooked beef as it's cooking. [and if you want a GREAT vegetable with rice & peas, find some calalloo! it's sort of like spinach - only better and more nutritious!]

Hypermobility Arthralgia syndrome???

Is it connected to ehlers-danlos syndrome (EDS) - referred to by some docs as hypermobility syndrome (HMS)? (see ednf.org for more info) ... I can see a doc calling EDS type III/HMS "arthralgia" - it sort of makes sense.

If so - or maybe even if not - there's a good chance that it's all connected. A few years ago I was finding interesting links between EDS, fibromyalgia with hypermobility, and gluten intolerance. I don't think I ever found anything really conclusive, but what I printed off was enough to make the doctors go, "Huh."

In my experience, going completely gluten-free (and your son should go DF too even with a "mild" lactose intolerance!) does not resolve the hypermobility but will lessen it, and also help with the overall level of body pain.

I had an absolutely horrific experience on Cymbalta - the docs thought I had MS! I was falling down, slurring my words, couldn't think, couldn't use the bathroom (went six weeks without a bowel movement!) ... and they never considered the drug.

It was after I was released from the hospital with a grand "we just don't know..." that I found an obscure reference in the info provided for doctors (it wasn't echoed in the patient materials!) that these symptoms were possible.

I immediately stopped taking the drug. Withdrawl was horrific - especially the "zaps" which weren't just in my head, they were all over.

I echo a previous poster - I will never again take a drug that afflicts the brain chemicals in ANY way. Period.

Quite frankly I'm at a point where I distrust the pharma companies anyway... so I'm trying to avoid taking prescription drugs.

We just started using Lame Advertisement stuff, so I don't know how long it's been there.

If you go to Lame Advertisement.com and select your region (off to the right there's a drop-down list) you can see the products; most things if you click through to the actual product have three tabs - one that lists what the item is, the price, etc., another that shows the actual product label with ingredients, and another with additional info. Usually you can tell if an item is gluten-free from the label.

I'm going to write and see if I can get a complete gluten-free list.

I hope it's not breaking the rules to say, if anyone's interested in Lame Advertisement let me know

Does anyone know if Lame Advertisement Vitamins are gluten free?

I know this post is several years old but it's one of the first things that comes up on a google search.

I'm re-starting a gluten free diet, so meds and vitamins are a big consideration. I've been taking Lame Advertisement's Vitality brand vitamins (and love them so far). When I looked at the ingredient list my brain drew a blank on what's gluten-free and what's not, so I googled it and found this unanswered thread.

Some investigation later, and I still had no answer, so I looked on the bottle again. In fairly large print, right on the outside, it says, "GLUTEN-FREE".

I need to research what other Lame Advertisement products are gluten-free - if anyone's interested in results, let me know!

Wendy's at one point said that their FF's are gluten-free -- HOWEVER -- if you stand near the counter and watch how they are prepared at most stores, there is a problem.

The Chicken Tenders and Patties are to the left. The FF's are to the right. The Tender & FF heater-holder-thing is to the right of that. So when they pull the tenders out of the hot oil, all the crumbs and oil fall into the FF oil. It took me quite a while to sort out why I'd be reacting to supposedly-gluten-free FF's. One day I watched them making them ... AHA!

Not all Wendy's are set up this way ... some have the opposite fryer configuration ... so if the fries are still gluten-free you might be able to enjoy them there.

-Kathi