Hit A Ceiling For Recovery, Maybe Even Taken A Step Back

[UpbeatPete]

At week 5 and feeling so much better than I did a month ago; however, my joint pain seems to have comeback a bit and my brain fog level seems to have stopped improving. Don't get me wrong, I am really happy about all the progress I have made in a short time, but was curious what it will take to get to the next level. (My problems are neurological)

My diet consists of meats, mostly grilled, all on foil

Potatoes, baked and fried, sweet too

All kinds of fresh vegetables, big fan of avacados

Fruit; bananas, berries, cherries, etc. No apples right now

Beans

All new Cookware as well

I have also went lactose free (officially today because I just realized last nite that Smart Balance has whey in it)and corn free.

Any ideas how to make that next step?

[sa1937]

Any ideas how to make that next step?

You're only five weeks into the diet...I'd just keep doing what you're doing! A lot of us are lactose intolerant right away so since you've just taken that out, I'd give it more time and then see if you improve even more. After I'd been gluten-free for about nine months, I started to eat more hard cheeses. I still buy Lactaid milk as I don't know how much I want to push it.

[GlutenFreeManna]

Have you had your vitamin and mineral levels checked? You may be deficient in something. Some common ones to have checked are vitamin D, Vitamin B12, iron, calcium, potassium, and zinc. B12 is important for helping with brain fog and vitamin D deficiency could make you have that joint pain. Since you have dropped most of the processed items which are fortified with all these vitamins you might want to at least add a gluten-free/DF multivitamin. Do check with your dr first however, especially if you are taking any medications because vitamins and meds can interact and cause side effects.

[UpbeatPete]

Thanks sa1937

I guess I am getting a little impatient because I got a taste of being healthy, and now I want the whole thing. I certainly miss cheese

Thanks GlutenFreeManna

I just called my Dr. and asked to have some blood work done.

It is interesting that you mention potassium; that is really what started me down this gluten free trail. About 3 years ago I started feeling really weak and groggy. My family physcian ordered a bloodtest, which showed really low levels of potassium; about 2.6 (The normal potassium level is 3.5-5.0 mEq/L). After a few months, I was sent to a nephrologist and she diagnosed me with Gitelman's Syndrome (low electrolyte levels.) Finally after about a year and half of trying to raise my potassium levels (they never increased) I decided to go to another Dr. He still pushed the potassium, while looking into other things. My K level finally made it to about 3.1 in April this year and I still felt terrible, in fact, worse than ever. I did more research on my symptoms when I should have been studying for finals, when I realized I could have Celiac. Got tested for Celiac, came back negative. Went gluten free anyway, symptoms have lessened in severity and my potassium went up a little more to 3.2.

[Skylark]

That's pretty severe malabsorption. I bet some extra B12 and D would help you feel better.

[Marilyn R]

Thanks sa1937

I guess I am getting a little impatient because I got a taste of being healthy, and now I want the whole thing. I certainly miss cheese

Thanks GlutenFreeManna

I just called my Dr. and asked to have some blood work done.

It is interesting that you mention potassium; that is really what started me down this gluten free trail. About 3 years ago I started feeling really weak and groggy. My family physcian ordered a bloodtest, which showed really low levels of potassium; about 2.6 (The normal potassium level is 3.5-5.0 mEq/L). After a few months, I was sent to a nephrologist and she diagnosed me with Gitelman's Syndrome (low electrolyte levels.) Finally after about a year and half of trying to raise my potassium levels (they never increased) I decided to go to another Dr. He still pushed the potassium, while looking into other things. My K level finally made it to about 3.1 in April this year and I still felt terrible, in fact, worse than ever. I did more research on my symptoms when I should have been studying for finals, when I realized I could have Celiac. Got tested for Celiac, came back negative. Went gluten free anyway, symptoms have lessened in severity and my potassium went up a little more to 3.2.

My first symptoms were neurological too. I found that after going gluten-free, I had to go Soy, Dairy (not just lactose) and Corn Free too. I don't know if that's your case. If you're grilling meats with marinades that contain soy (and there are a list of soy derivatives that is almost as mind boggling as the gluten list), maybe soy is the problem.

What are you drinking? (If you drink coffee in the morning, it can be what you're putting in the coffee.)

Hope you figure it out and start feeling better soon.

[UpbeatPete]

Thanks everyone for the input!

Currently I only drink water, about 100 ounces a day. And the only thing I season my meat with is salt. Pretty bland, but I am being very cautious.

I did notice that when I started taking a multivitamin the other day, which contained soybeans, I began to feel worse!

I am getting bloodwork done tomorrow; I'll let you know how it turns out!

[UpbeatPete]

B12 came back normal.

[domesticactivist]

The potatoes could be a problem. Nightshades are associated with joint pain. We avoid potatoes for that reason (son is celiac with joint problems) and also because they are very starchy and we avoid all starchy vegetables due to the sugar.

I am not celiac but have neurological problems... or, I should say, *had* neurological problems. Tingling hands, body parts not "waking up" in the morning, severe migraine auras, etc. I was evaluated for strokes and MS repeatedly but nothing showed up.

Anyway, the GAPS diet resolved these symptoms for me. I have posts on my blog about GAPS if you are curious.

[UpbeatPete]

I noticed a lot of people had nightshade free in the signature and I did a little research. Potatoes are my favorite food, so giving them up would definitely be a buzzkill.

[T.H.]

Things I've run across that might be an issue, just randomly.

- For me (and my kids, too) after being gluten-free a while, we had noticeable reactions to foods that we didn't have noticeable reactions to at first. :-) I don't know if we became more sensitive, or if our reactions increased to food that we always had trouble with, but that might be an issue for you, potentially

- Have you done a food journal? Might be worth your while, see if anything you're eating might be an issue, too. We have found foods that we're allergic too and some that we seem to be sensitive too, as well. Wouldn't have found these without some elimination and food journaling. We got rid of the 8 major allergens in the diet. While we had no trouble with some of them, and DID have trouble with some other foods, we had to go so 'basic' while on the diet that it helped track all the foods down quite a bit, for us at least.

- How corn free are you? Do you wish to eliminate it all, including corn derived ingredients, or only major sources? If you wish to eliminate all corn, if you haven't checked a corn allergy site for sources, you might want to do that. We missed some of the corn derived stuff that really seemed to be a problem, like all iodized salt (corn stabilizes the iodine) and vitamins (most of them, even many of the corn free ones, have corn derived ingredients, at the very least).

- Do you always use the same salt? Do you use any oil? I've found some of both that bothered me. Salt that was processed in a facility that had wheat-containing spice mixtures, and oils processed on lines that also processed wheat germ oil. We didn't really look at these as issues, at first.

- Where do you get your meat? Is it at a meat counter? Might it have some contamination? We've had some that were cut up near where the other butcher was adding flour to their coated meat products for the counter. Do you have any issues with antibiotics? I've noticed that after going gluten free, my allergies with antibiotics have extended now to problems with antibiotic residues leftover in meats. Fish and beef are especially bad with this.

- Fruits and veggies - do you wash with soap and water, even the avocados? Anyone who has touched these at the grocery store with gluten on their hand will have contaminated them, and especially with the stores often offering a 'free cookie' to children during the store trip, it's pretty likely to happen. Water won't get it off well enough, often times.

- Have you called up the company/farm that processes your beans? Beans, dried fruit, and nuts are very often processed in a facility that processes wheat. However, this information is optional, not mandatory, on the label. So you'll need to call 'em up to make certain.

- Do you know if you have any sensitivities to chemicals, pesticides, etc? Some things to look out for: non-organic berries often have a lot of pesticide residues. Root veggies that sprout, like sweet potatoes and potatoes, are often gassed to prevent sprouting, and non-organic potatoes are on the top ten list this year for the highest pesticide loads. Citrus, pears, and apples tend to have a shellac wax coating (even organic) which has casein or soy added for texture. Strawberries and button mushrooms can have oat or wheat straw covering them to keep them protected. (nice, huh? Sigh)

- Any pets? Most pet food is very high in gluten, for bunnies, cats and dogs, fish, you name it. Well, not snakes, I guess. ;-)

- Any construction that you live near or work near? Construction materials often have gluten, and the gluten dust in the air can be in high enough amounts that you can inhale enough (and get it down your throat) to make you sick. Sawdust from plywood and dust from drywall are two big offenders for this.

- Any gluten containing makeup or hygiene products? If you rinse the shampoo off and any gets on your lips, for example, then it can zap you. Or if you kiss someone who eats gluten, that'll get you. Or bite your nails if your lotion has gluten...that sort of thing, ya know?

Aaaaand...that's all I can think of. I swear, I've gotta write this down sometime - I always end up forgetting something! :-)

Good luck!

Shauna

[domesticactivist]

Wow Shauna - I thought I had it down but you brought up things I had never thought of. Thanks!

[UpbeatPete]

OT Sidenote: I did get the results from my sleep study this morning and everything was pretty normal accept I move my legs more than I should when I sleep. They were wanting to check my iron and seratonin levels now. They also mentioned a medication to keep them from moving so much; pretty apprehensive about that.

Wow thanks Shauna!

I just started a food journal yesterday and am looking foward to pinpointing my problem. I thought I might be able to get by without having to do one, but I have found that it is very necessary. I am pretty sure at this point I cannot have peas!

I am currently not on a vitamin, but trying to find a good, safe one! I use morton's salt out of the same salt shaker for every meal and to cook with. Is Morton's Salt safe? I cook exclusively with Bertolli's Extra Virgin Olive Oil; have you had any experience with it?

I eat Randall Beans and was unable to contact them via telephone; however their website says their beans are "gluten free." What type and brand of beans do you eat normally?

I never considered a lot of these things, especially using soap to wash my produce. I made a bad assumption about their gluten free status and never would have thought about any of those possibilities. One pet, dog, and I don't normally have to feed her. Luckily, there is no construction around where I am at.

I do use Baby shampoo now for my hair, which is supposed to be gluten free and I have been using Coppertone for my sunscreen (also supposed to be gluten free).

[T.H.]

I am currently not on a vitamin, but trying to find a good, safe one! I use morton's salt out of the same salt shaker for every meal and to cook with. Is Morton's Salt safe? I cook exclusively with Bertolli's Extra Virgin Olive Oil; have you had any experience with it?

...What type and brand of beans do you eat normally?

Soooo...hmmm...trying to figure out how to answer. I seem to be super-sensitive to gluten, more so than most, so a lot of things I can't have seem to be perfectly safe for most celiacs. I'm kind of a bad gauge of what's 'okay,' as a result. Although if I can have it, there's a pretty good bet that most celiacs can, LOL.

Morton's salt and Bertolli's are no good for me, gluten-wise. However, my father and brother, also celiacs, have used Morton's and bertolli's olive oil both and don't seem to have a problem.

Morton's does have corn if it's the iodized salt.

For Randall beans, I haven't tried these, nor do I think my family has. But they might be suspect, yeah (but could also be fine.). There is no law in effect governing gluten-free food in the USA, currently. For the proposed standard, though, if a food doesn't contain gluten in its natural form and it's unprocessed to a certain degree, then the company can say it's gluten free. Unfortunately, this doesn't mean that it's been tested or verified to be gluten free.

There are many who are concerned about this and wish to have it changed, because foods in this category can actually be gluten contaminated from points of gluten contact along the route from field to grocery store. One study (just on grains) tested a number of 'naturally gluten free' grains and flours to see if this was the problem they were thinking it could be. It was. The lowest gluten level was 8.5 ppm (the proposed gluten standard is 20 ppm or less). The highest gluten level in a 'gluten free' grain was 2,925 ppm.

There's an article on it here:

Open Original Shared Link

As to brands I eat. I have Field Day Mediterranean sea salt (but I have to take a liquid iodine supplement because I can't have the iodized salt), Bariani olive oil, and beans from Rancho Gordo. I have to wash the beans first or they are still not so safe for me. I have to order all of these on-line, unless I'm visiting a few select stores in Northern california. :-)

shauna