Completely Disappointed

[Black Sheep]

Oh, nooo.... My sweet, thoughtful son and d.i.l. just bought me a bag of that mix, along with some other g.f. stuff when they went to the store. Just 'cuz they love me! No really, they do love me! They just don't know anything about g.f. stuff!

I don't remember if I've ever tried the baking mix. A couple of years ago, hubby and I went on a detox diet, and gluten was not a part of it. So I bought--I think--a pancake mix from Bob's. I'm pretty sure it was pancake mix, and not the baking mix. Yeah, because I don't think you'd use a baking mix for pancakes. Anyway, the pancakes weren't horrible or anything....we did eat them, but they tasted a little "off".

I wonder if I could return the unopened mix to the store,and exchange it....

[gary'sgirl]

Okay everyone! Do not keep bashing Bob's Red Mill! They really do make some really great gluten free stuff, and the best thing about it is they have a dedicated facility for all their stuff that says gluten free on it. There are not too many companies that do that.

I know that many of you have had a particularly bad experience with the all purpose mix, but I'm wondering if maybe the mix only works well with savory stuff and if perhaps some stores don't rotate it and it goes bad, because I have been making home made bread with it for my husband (who is a very picky eater and is not gluten free) and my picky four year old as well as a couple of friends and they all like it. Now maybe my bread recipe is just extra ordinarily good , but I don't think any recipe could cover up what ya all were describing.

Anyway, you probably should return the flour if you don't like it, but at least give some of their other stuff a try.

[newgfcali]

Didn't mean to Bash Bob -- he's my go-to guy for most things. I can eat his gluten-free oats, and use his baking soda and many other products. It's just the baking mix I didn't particularly care for. BUT... I will continue to buy his other products. It's so hard to find a completely gluten free company, so I want to support his as much as I can.

Sorry if I came down hard on the whole company... not my intent.

[JNBunnie1]

Didn't mean to Bash Bob -- he's my go-to guy for most things. I can eat his gluten-free oats, and use his baking soda and many other products. It's just the baking mix I didn't particularly care for. BUT... I will continue to buy his other products. It's so hard to find a completely gluten free company, so I want to support his as much as I can.

Sorry if I came down hard on the whole company... not my intent.

Actually, the products people don't seem to like are usually the ones with bean flour in them. Just try to keep an eye out for it if you don't like the taste. I find the pizza mix makes really good hamburger buns. No bean flour!

[gary'sgirl]

Didn't mean to Bash Bob -- he's my go-to guy for most things. I can eat his gluten-free oats, and use his baking soda and many other products. It's just the baking mix I didn't particularly care for. BUT... I will continue to buy his other products. It's so hard to find a completely gluten free company, so I want to support his as much as I can.

Sorry if I came down hard on the whole company... not my intent.

Oh! Newgfcali, you are great! I didn't think you were bashing the whole company at all. I was just teasing a bit. I'm sorry - I hope I didn't make you feel bad. I should have added some "ha ha's" and "lol's", because I was really just saying that in good humor. Besides, I want to hear what you all think about different products - it's really helpful.

I really don't want to be a discouragement to anyone here - heaven knows we have all had enough of it to last a life time. (kicking myself )

I find I'm not a very good communicator.

I hope you are having a good day. I just got home from the neurologist - so it's not such a great day for me.

Let me know if you have any good baking advice to pass along. (Even the stuff that you didn't like or didn't work )

~Sarah

[newgfcali]

Oh! Newgfcali, you are great! I didn't think you were bashing the whole company at all. I was just teasing a bit. I'm sorry - I hope I didn't make you feel bad. I should have added some "ha ha's" and "lol's", because I was really just saying that in good humor. Besides, I want to hear what you all think about different products - it's really helpful.

I really don't want to be a discouragement to anyone here - heaven knows we have all had enough of it to last a life time. (kicking myself )

I find I'm not a very good communicator.

I hope you are having a good day. I just got home from the neurologist - so it's not such a great day for me.

Let me know if you have any good baking advice to pass along. (Even the stuff that you didn't like or didn't work )

~Sarah

No... it didn't make me feel bad at all. That would be the accidental glutening I got yesterday that made me feel bad.

Will continue with my science experiments as soon as I'm feeling brave again. :)

Hope you're ok... bad report from the neuro?

[jerseyangel]

I know this is too late for your party, but I make a very simple pineapple upside-down cake with Gluten Free Pantry Cake and Cookie Mix. It's a bit denser than other white cake mixes but with the butter, brown sugar, and pineapple to moisten it, it's perfect for this.

You can make it dairy free by using water (or pineapple juice from the can, which is what I do).

[newgfcali]

I know this is too late for your party, but I make a very simple pineapple upside-down cake with Gluten Free Pantry Cake and Cookie Mix. It's a bit denser than other white cake mixes but with the butter, brown sugar, and pineapple to moisten it, it's perfect for this.

You can make it dairy free by using water (or pineapple juice from the can, which is what I do).

Thanks, Patti. Do you know if it has soy in it? I'm finding many of the premade mixes have either casein or soy in them, so they're on my no-no list right now. Hopefully in a few months I can start adding back a few things. In the meantime, I'm saving all of these great tips for the brighter future.

[jerseyangel]

Thanks, Patti. Do you know if it has soy in it? I'm finding many of the premade mixes have either casein or soy in them, so they're on my no-no list right now. Hopefully in a few months I can start adding back a few things. In the meantime, I'm saving all of these great tips for the brighter future.

No soy in the ingredients, but a "may contain traces of soy" warning.

Ingredients: white rice flour, sugar, potato starch, sodium bicarbonate, xanthan gum, salt, sodium acid pyrophosphate, monocalcium phosphate.

[gary'sgirl]

No... it didn't make me feel bad at all. That would be the accidental glutening I got yesterday that made me feel bad.

Will continue with my science experiments as soon as I'm feeling brave again. :)

Hope you're ok... bad report from the neuro?

My symptoms have not gotten much better after being gluten free for 5 going on 6 months now. The Doc thinks it's possible that I could have MS as well as Celiac. We'll just have to see. Mostly it's just hard because I'm trying to figure out how to get all these test done and get to all these appointment while feeling crappy and having an infant, 2 yr old and 4 yr old. All the while my husband is trying to finish up this last semester of school with a really needy wife on his hands. Yeah, I guess that's it in a nutshell. Sorry about the rambling.

[newgfcali]

My symptoms have not gotten much better after being gluten free for 5 going on 6 months now. The Doc thinks it's possible that I could have MS as well as Celiac. We'll just have to see. Mostly it's just hard because I'm trying to figure out how to get all these test done and get to all these appointment while feeling crappy and having an infant, 2 yr old and 4 yr old. All the while my husband is trying to finish up this last semester of school with a really needy wife on his hands. Yeah, I guess that's it in a nutshell. Sorry about the rambling.

Well, that's a lot to handle. But you're not "needy" -- you're sick. "Needy" implies spoiled and whiney, whereas you have a VERY good excuse for needing help. So go easy on yourself.

Is it possible you have other food intolerances that are causing you to feel crummy? Have you tried cutting out soy, dairy, eggs, legumes, nightshades? Any and all of these can cause reactions in gluten-sensitive people. What makes your neuro think it might be MS? Have you had an MRI yet? Do you have neuropathy, tremors, eye problems, weakness in hands and feet? Even if it is MS, there are new treatments that are quite effective. My step-daughter has it and is back working full time, thanks to her meds.

Keep us posted. Hope you're feeling better soon.

[Black Sheep]

"Okay everyone! Do not keep bashing Bob's Red Mill! They really do make some really great gluten free stuff, and the best thing about it is they have a dedicated facility for all their stuff that says gluten free on it. There are not too many companies that do that."

This is too funny! Sarah, I wouldn't worry about it! Not that I can speak for newgfcali. But I could tell you were just kidding around in your "Don't Bash Bob" post! lol And I agree, Bob's other stuff is great! Most of the g.f. stuff around these parts is Bob's....probably because his co.'s in OR, and I'm in WA, so it's almost "local". Once of the closest (and cheapest) grocery stores to me carries more of Bob's stuff than anyone else in my area, so I load up on the sorghum, millet, tapioca, potato starch, teff, xanthan gum, and rice flours. I need to check and see if they have quinoa flour, and if so, the price. I haven't bought amaranth flour yet, although I'm dying to try it--because even at my "cheap" store, it's almost $9 for a 2 lb. bag!

[Black Sheep]

Maybe someday my neurons will grow back. I'm such a dork--Sarah, I replied to your "Bob's" post right from page 2, never realizing there was a page 3! So I get to page 3 and find an entirely different direction.....like you health, with your kids, and hubby in school....good grief, you have a lot on your plate!

Sorry about the screw-up....and I agree with newgfcali, you are not being "needy"! Cancer patients who have lives to juggle, all the while having to go to and fro for more tests, chemo, etc., while feeling like crap, are not called "needy" when they say how they feel. Nor should they be, of course--they're called "sick". So it should be no different for a person with celiac, who must endure a lot of exhausting stuff, while in the testing and healing process.

[gary'sgirl]

Thanks for the encouragement newgfcali and black sheep. I maybe do need to try going off of dairy again. I have taken dairy and soy out of my diet three times in the past two years. I surprisingly enough didn't seem to be having any dairy problems specifically at the time I took gluten out of my diet (surprisingly because I had been lactose intolerant since I was a kid). I have been off of soy and just tried it again with so far no aparent reactions. I do have a prob with nightshades, legumes, all meat (I seem okay with fish), nuts, and I was cutting out most grains (rice, corn, etc...). I haven't tried eggs, but have been paying attention to when I eat them and it doesn't seem to be a problem, but I may try cutting them out just to see if things don't improve soon.

I am going to have an MRI next Friday, and they are testing me for neuropathy, as well as doing a whole bunch of blood tests for various things. This was actually my first appointment with a neurologist, so I don't really know all the ins and outs of it yet. I have had some symptoms like muscle weakness and eye problems. One of the problems I am have that is quite frustrating is vision/migraine problems - the visual disterbance has not gone completely away since January.

How long have you guys been gluten free and are your issues resolving? Have you had neurological problem? I have been quite disappointed with my seemingly lack of recovery since going gluten free.

[newgfcali]

{snip}

I am going to have an MRI next Friday, and they are testing me for neuropathy, as well as doing a whole bunch of blood tests for various things. This was actually my first appointment with a neurologist, so I don't really know all the ins and outs of it yet. I have had some symptoms like muscle weakness and eye problems. One of the problems I am have that is quite frustrating is vision/migraine problems - the visual disterbance has not gone completely away since January.

How long have you guys been gluten free and are your issues resolving? Have you had neurological problem? I have been quite disappointed with my seemingly lack of recovery since going gluten free.

The combo of vision, migraine and weakness does sound like it could be MS, but these symptoms can also be attributed to many other things. Sound like your neuro is determined to get to the bottom of it, which is good.

I'm going on 6 months gluten-free also. I stopped gluten when I found a link between it and neuropathy. A few months into being gluten-free I did the enterolab tests and found that I was sensitive to gluten, yeast, soy and casein, which are now all gone from my diet. As far as my GI problems go, they are mostly improving, although I go up and down with random glutenings (at least I think that's why I'm getting sick). But the nerve problems continue, and have actually gotten worse, which is why I have my first appointment with a neurologist coming up. I'm hoping he can give me a definitive answer as to what's causing it. I actually found one that specializes in peripheral neuropathy, so here's hoping.

Good luck with your tests next week. I hope they find an answer.

[JNBunnie1]

The combo of vision, migraine and weakness does sound like it could be MS, but these symptoms can also be attributed to many other things. Sound like your neuro is determined to get to the bottom of it, which is good.

I'm going on 6 months gluten-free also. I stopped gluten when I found a link between it and neuropathy. A few months into being gluten-free I did the enterolab tests and found that I was sensitive to gluten, yeast, soy and casein, which are now all gone from my diet. As far as my GI problems go, they are mostly improving, although I go up and down with random glutenings (at least I think that's why I'm getting sick). But the nerve problems continue, and have actually gotten worse, which is why I have my first appointment with a neurologist coming up. I'm hoping he can give me a definitive answer as to what's causing it. I actually found one that specializes in peripheral neuropathy, so here's hoping.

Good luck with your tests next week. I hope they find an answer.

If it helps you guys at all, I had a big problem with peripheral neuropathy when I went gluten free. I actually developed the symptoms AFTER going gluten-free, and it lasted about nine months. Along with balance issues, vertigo, mild ataxia & cognitive issues. I couldn't feel it when I hurt my hands for nine months, and would drop things without noticing too. Had me totally freaked out. I did not have health insurance at the time, so did not get tested for anything, hoping it was just a gluten thing, and I was right, it all went away and hasn't come back for years. Well, I hope I was right!

[newgfcali]

If it helps you guys at all, I had a big problem with peripheral neuropathy when I went gluten free. I actually developed the symptoms AFTER going gluten-free, and it lasted about nine months. Along with balance issues, vertigo, mild ataxia & cognitive issues. I couldn't feel it when I hurt my hands for nine months, and would drop things without noticing too. Had me totally freaked out. I did not have health insurance at the time, so did not get tested for anything, hoping it was just a gluten thing, and I was right, it all went away and hasn't come back for years. Well, I hope I was right!

That's the first I've heard of anyone developing PN after going gluten free. I'm very glad to hear you no longer have any of these issues.

[gary'sgirl]

If it helps you guys at all, I had a big problem with peripheral neuropathy when I went gluten free. I actually developed the symptoms AFTER going gluten-free, and it lasted about nine months. Along with balance issues, vertigo, mild ataxia & cognitive issues. I couldn't feel it when I hurt my hands for nine months, and would drop things without noticing too. Had me totally freaked out. I did not have health insurance at the time, so did not get tested for anything, hoping it was just a gluten thing, and I was right, it all went away and hasn't come back for years. Well, I hope I was right!

What specifically is peripheral neuropathy? And also what is ataxia? I have seen it mentioned several times.

[newgfcali]

What specifically is peripheral neuropathy? And also what is ataxia? I have seen it mentioned several times.

Wiki has some very detailed info on each of these conditions:

Open Original Shared Link

Open Original Shared Link

There is good evidence linking gluten sensitivity/Celiac with both neuropathy and ataxia. Dr. Marios Hadjivassiliou has written a bunch of papers on the subject:

Open Original Shared Link

[Black Sheep]

Oh, I'm glad for those links! For years, my balance has been "off". Sometimes I'll be walking along and suddenly reel like a drunk for a moment. In my house, I'll be walking to or from a room and hit the doorway! Not run into like from walking directly into it, but like, suddenly lose my balance a little and bump into it. My daughter was here a couple of weeks ago and doing the same thing, and commented on it (she's certain now she has a gluten problem, too, from this and other symptoms). And last year around this time, after "overdoing" it one day, my limbs suddenly felt really funny---weak and shaky, but also just....strange. I couldn't describe it. So, thinking I'd been doing to much, I decided to sit in a lawn chair in the sun and rest. Now I'd been getting sicker and weaker for awhile, and that day we were going to be raking the garden area into raised beds and paths so it could be planted, so I was trying not to overdo it. It was my workout day (weight training), so I did a quick, easy workout, vaccumed just a little, then went out to rake. I felt awful, and was trying to rake a walking path between the beds. Hub looked at it and said, "You call that a path? The chickens could have raked a better path than that!" He's quite the joker. I couldn't figure out what was wrong with me, so that's when I sat down and watched him work. My muscles felt so weird, I later decided that maybe I should take a long, hot bath, so that hopefully, I wouldn't ache the next day. That night we sat on the front porch, sipping wine and talking, and after going into the house for a minute, when I tried to walk back out, I could hardly walk. And no, I hadn't drank that much wine! Less than one glass. The next time I got up, to go in for the night, I couldn't walk at all without hubby holding me up and helping me. It was the same the next day--if I wanted to go from room to room, I had to hold onto furniture, or get help. Finally I was able to walk on my own, but for the next several days my limbs were still really weak. I also had a lot of tingling/pins and needles in my limbs.

I later learned that these are classic symptoms of MS, especially when the symptoms got so much worse after sitting in the sun and the hot bath tub. But I don't have insurance, so there was no way I could get an MRI. But it got to the point where I couldn't work out anymore, and due to my plantarfaciitis, I can't walk far enough to get in even a halfway decent workout. I'm thinking of trying a stationary bike.

So we'll see. I've only been g.f. for 5 weeks, and since I haven't worked out in a year, I guess I won't really know until I get back into it. But last year my doc had me get tested for heavy metal poisoning, and I was high in mercury, lead, and off the charts in tungsten. And mercury or lead--I've forgotten which--can give MS-like symptoms.

[newgfcali]

But last year my doc had me get tested for heavy metal poisoning, and I was high in mercury, lead, and off the charts in tungsten. And mercury or lead--I've forgotten which--can give MS-like symptoms.

A quote from the Quest Diagnostics website:

"Peripheral neuropathy may also be caused by several heavy metals. Lead toxicity is associated with motor neuropathy, whereas arsenic and mercury cause sensory neuropathy. The 24-hour urine heavy metal test is the most useful test for diagnosis of heavy metal toxicity."

Since MS can present with both motor and sensory dysfunction, the combination of lead and mercury would give you both symptoms.

How did you get so much heavy metal in your system? Are you getting treated to remove the toxins from your body?

[newgfcali]

Isn't it amazing that we can go from talking about pineapple upside down cake to heavy metal toxicity? I love this forum. I learn so much!

[JNBunnie1]

Isn't it amazing that we can go from talking about pineapple upside down cake to heavy metal toxicity? I love this forum. I learn so much!

I was just thinking that! At least the mods haven't yelled at us for going off topic.... yet....

[Black Sheep]

How did you get so much heavy metal in your system? Are you getting treated to remove the toxins from your body?

Ummm....you know, I'm sure it was all that pineapple upside-down cake I'd been consuming!

In answer to your question--and I hope I don't get in trouble here--I'm not sure. I drink filtered water, don't use pewter plates or anything...I did however, grow up sort of between 3 military bases, and found on the EPA's site reports of the horrific poisoning of the wells in the area (we had a well) in the area. I live across a narrow bay from another base, and the same site listed at least 52 or so "known" heavy metals in the bay.

My doc said that she's getting as many of her patients as are willing to do this test, and that they all say, "How in the world could I have heavy metal poisoning?" And she tells them "Because it's in the air, the water, the ground---pretty much everywhere. Because you live on Planet Earth."

[Black Sheep]

Pineapple upside-down cake. lol