Uh-Oh. I'm New At This

[Black Sheep]

Bob's oat flour--could that be why, after 2 weeks on the "challenge diet" or whatever they call it, I feel no different?

I just now registered after having read several posts, and I must say, it sounds as if I've found a lot of kindred spirits here! I was always a sickly child....always getting the flu (and always the worst kinds w/high fevers and days of throwing up), colds, strep throat, tonsillitis, and even a kidney infection when I was 5 that they thought might kill me. Had pneumonia a couple of times, too. They never did figure out the cause of the infection though, and I got a couple more before I turned 10; at least they were milder. Finally at age 10, my pediatrician told my mom that my nasty tonsils were probably the root of most of my infections, and it was time to yank them out. After that, I didn't get the flu nearly as often, nor did I have any more kidney infections. But I still was never what you'd call real healthy, and never had the energy the other kids had, although I was very active, and loved playing outdoors, climbing trees, riding my horse, whatever---same as them. I wasn't overweight, but I grew way too slowly and too little, and pretty much stopped growing at 13. When my parents bought my last horse when I was 10, my dad had to punch extra holes in the leather to shorten the stirrups enough for my short legs--I still have that saddle, and the stirrups are still the right length for me! Some docs have measured me at 5'2", some have said I'm 5'3".

When I turned 30 I started gaining weight, and simply cut back on the fat, as always before I could lose weight (like after my 2 babies were born) by simply cutting out a few calories. This didn't work so I began exercising more. I continued to gain, so I began exercising more earnestly, and sad to say, since it was the early '90's the "conventional wisdom" at the time was, "very low fat, lots of carbs." I kept piling on the weight, and had nearly every sign of hypothyroidism, but no one believed me 'cause the blood work kept coming up negative (I have since found that the Barnes Basal Test is actually more accurate). I was working out 6 days a week, doing weights at the gym and a variety of cardio, and got fatter and fatter.

Finally, at the age of 42, I went to a Naturopath who realized that my very low internal body temp upon waking was indicative of hypo., and put me on a natural thyroid med. She also found I had Hypochloridia--low stomach acid--in fact I had almost no stomach acid. This had caused a host of problems (so many I don't think I can remember them all), so I thought that between the thyroid meds and now taking HCL with my meals, plus sublingual B-12 for the pernicious anemia, my problems would be solved. She also suspected a gluten intolerance, and had me do the challenge test for 1 month to see how I felt. I did it and felt no better, so she concluded that gluten wasn't my problem.

3 more different thyroid meds and 1 Naturopath later (I had no problem with the one I was seeing, she was just too far away), I am now nearly 48 and, after some improvement for a few years, have in the last 1 1/2 years really gone downhill. Morbidly obese, fatigued to the point of barely being able to walk around at times, daily diarrhea for the last 11 years, diagnosed by various docs along the way with IBS, Chronic Fatigue, Fibromyalgia, Arthritis, Plantarfaciitis in my feet, mild Tachycardia, Heavy Metal poisoning (lots of mercury, lead and tungsten in that test--ever hear of tungsten?), etc. And last spring I started having many of the classic MS symptoms. After "overdoing it" with a workout on my home gym, vacuuming one small rug, and having the audacity to try to go rake some dirt in the garden, then taking a hot bath (oops), I found that by that evening I was unable to walk without hubby holding me up. Not cool.

So now this new doc has me doing the no-gluten-for-1-month thing, it's been 2 weeks and I've made some amazingly fabulous g.f. breads that even finicky hubby likes. And using Bob's Red Mill Oat Flour, that is not labeled g.f. And once I ate some Bob's Steel Cut Oats, also not labeled g.f. I thought my local grocery store had a wonderful selection of Bob's stuff, but when I think back on the stuff labeled in large letters as g.f., there were only a few, and they were all mixes. So what about his teff, amaranth, and rice flours? Have I totally screwed up beyond redemption?

[ravenwoodglass]

"Have I totally screwed up beyond redemption? "

No you haven't. Do drop the oats for now though, some of us react to even the gluten free ones. You can try them after you have healed and see if you tolerate them. For now go with as much whole unprocessed foods as you can. I would go easy on the gluten free replacements for now. Concentrate on fresh whole foods as much as you can with single ingredient frozen veggies and fruits.

Also read as much as you can here. You need to be careful of cross contamination and take precautions especially if there are folks in your home still eating gluten.

I am also going to advise you to call your doctors office asap and ask for a lab slip to get celaic screening done. Do this now while you have been and still are eating gluten. If you have a day or two before you can get the blood test go back on gluten for that time. You may have been gluten light for long enough for it to lower your postive, if you are someone who shows up in blood tests, or even cause a false negative. It is your choice whether you want testing or just go with dietary response but I wanted to let you know that you can not be screened by blood test if you are already gluten free without making yourself sick again.

[Black Sheep]

I am also going to advise you to call your doctors office asap and ask for a lab slip to get celaic screening done. Do this now while you have been and still are eating gluten. If you have a day or two before you can get the blood test go back on gluten for that time. You may have been gluten light for long enough for it to lower your postive, if you are someone who shows up in blood tests, or even cause a false negative. It is your choice whether you want testing or just go with dietary response but I wanted to let you know that you can not be screened by blood test if you are already gluten free without making yourself sick again.

The problem there though is that I don't have insurance....we're self-employed, and I'm trying to convince my husband that at least some type of a high-deductible, catastrophic policy would be nice! I pay cash for all my dr. visits, and when she orders blood work, the lab lets me make payments. She was trying to save me a small fortune by not having me be tested, as when I saw her just over 2 weeks ago, she wrote up a draw sheet for for all the thyroid tests, since it's been quite awhile since I've had that checked, and that alone is around $250. She also wants me to have my hormones re-checked as soon as I can (which won't be until after we've forked over a substantial sum to the IRS!); those will run around $350. That on top of her fee, plus the fact that I have to go back next month, and....whew! $$$$$$$$$$$$$$$!!!!

I went yesterday to have the thyroid labs done, and insisted also that she test for anemia, as although I've been tired all my life, I've never been as worn-out fatigued as I've been the last 6 months or so. The reason I insisted on being checked for anemia was because the other day I read somewhere--not sure where, as another thing going on with me is a severe brain-fog and horrific memory--but it was saying that gluten intolerance/celiac disease can cause people to become anemic. And that also, taking calcium or eating beans with an iron-rich meal will block absorption of the iron. Something in the beans does this. And I always take my cal/mag with meals, which often include red meat because at one time I did have pernicious anemia (I take a sublingual B12, too). As if that weren't bad enough, I had been taking a carb-blocker, as well, which is derived from white beans. Oops. So anyway, I was asking the lady drawing my blood about the celiac test, and she said it's very expensive.

But I thought I read something here, in a post, that said something about the stool test being accurate even if you've been off gluten for a little while....this is day 15 for me. Is that so? And does anyone know if it's less expensive than the blood test?

I said in my original post that I wasn't feeling any better, and as far as energy goes, that's true--I fell awful. But on the other hand--and perhaps it's too soon to tell, but--I have noticed that the last few days I've been sleeping better (I've also been a chronic insomniac for many years), haven't felt the "pins and needles" in my feet and legs, and wonder of wonders--the diarrhea seems to have eased up! After 11 years! Like I said, maybe it's too soon to tell....maybe I've just been having a couple of unusually "good" days?

Or maybe gluten's been at the root of most, if not all, of my health problems from the beginning.

[ravenwoodglass]

You could look into Enterolab testing, they can test if you have been gluten free for up to a year. They have a web site that will have all the info for you. It does sound like the diet is starting to help. It does take a bit of time to heal and we all have ups and downs in the beginning. There are folks here that were self diagnosed so it is not uncommon for folks to go that route. Some of us have false negative blood tests anyway so it is certainly not 'required' that we have blood work and endo done. It sounds like you have a good doctor and I hope you are feeling better soon.

[Black Sheep]

I think I'll check out Enterolab. Thanks for all your help. It's good to be somewhere where there are others like me! When friends and acquaintances ask what's wrong with me, why do I always feel so lousy, never able to do anything, and I 2 or 3 of my various health problems, they look at me like I'm from another planet! I never make a.m. appointments (not knowing if I'll sleep the night before or not) and never tell people that I'll "for sure be there," or "absolutely" be able to be able to follow through with things on a long-term basis; I always say I'll give it a try and see how my body handles it. Like going into our county jail with a group every week as jail chaplains; boy, that worked well (not)! After 4 1/2 hours of running around cell-to-cell and sitting on concrete, or hard chairs where my feet couldn't touch the floor, I was hurtin' for certain! Now I stay home and write letters to prisoners. Even sitting at the computer hurts, but not nearly as much.

So I never thought I would ever hope for anything resembling a gluten intolerance--after all, it's a complicated pain--but now I found myself hoping it is, if it's the answer to even a few of my nasty problems. Bring on the meat and veggies!

[meatslayer]

I think hidden in there you asked a question. No don't eat the oats. The other flours, read a list of what you can eat.... you need to know.

[Black Sheep]

The reason I insisted on being checked for anemia was because the other day I read somewhere--not sure where, as another thing going on with me is a severe brain-fog and horrific memory--but it was saying that gluten intolerance/celiac disease can cause people to become anemic. And that also, taking calcium or eating beans with an iron-rich meal will block absorption of the iron. Something in the beans does this. And I always take my cal/mag with meals, which often include red meat because at one time I did have pernicious anemia (I take a sublingual B12, too). As if that weren't bad enough, I had been taking a carb-blocker, as well, which is derived from white beans. Oops.

Well, isn't this just great! I've realized I need to clarify something here. I found the article re. iron deficiency that I referenced above, from the Nov. '09 issue of Better Nutrition (which incidentally is the mag that recommended this site). One of the monthly features in this mag is a g.f. feature written by nutritionist Melissa Diane Smith. In this particular issue, she is talking about how red meat is a good source for heme iron; she then says: "Fish is relatively low in iron, but the iron in it is easily absorbed. Plus, adding fish to a bean meal can significantly increase absorption of iron from the beans." She then talks about how you should increase your vit. C consumption when eating iron-rich meals, as the vit. C will help increase iron absorption. Then in the next section--and here is the part that threw me off--she discusses things that inhibit iron absorption: "....factors that inhibit iron absorption include high-dose supplements and calcium-rich foods; phytic acid, which is found in grains and legumes(emphasis mine)....reduce your intake grains and legumes, or try soaking grains or legumes before cooking to reduce phytic acid."

Hence my confusion, since everything I've read about beans says they are a legume! So I'm not sure what she's saying here, as it seems contradictory--perhaps she means don't eat legumes other than beans with an iron-rich meal?

Perhaps some of you out there in Celiac Land know; but at any rate I just wanted to clarify what it was I read, as I didn't want to to give out wrong info! Sorry about that.