Another "could I Be..." Thread

[Tranquillity]

Hi everyone!

I've posted on lots of different forums regarding what might be wrong with me, and I'm currently investing gluten/wheat intolerance/allergy/celiac disease, whatever the differences are

Anyway.

Extremely long story, so I'll keep it down to what might be relevant.

I've had some kind of health problem constantly since I was a child (21 now; male by the way), it started out with me not eating propely, too little that is. I had that for a long time and I'm still not 100%, but it's no longer a big problem.

I've also had problems with anxiety/panic for the last few years or more, but the last 6 months have been hell for me, on every level. I don't get outside at all right now, due to not only anxiety but dizziness ("motion sickness", from EVERYTHING that moves, everything. Including web browser scrolling, TV/movies, taking walks (which I don't anymore)), and nausea of course, much due to the dizziness I think. I've had some stomach problems too, mostly diarrhea now and then. I usually get nausea when hungry too, nothing helps except eating, which isn't easy since I feel nauseous!

Some other symptoms:

Freezing (always cold feet, sometimes hands too, runny nose), dark/purple circles below my eyes, quite low blood pressure (between 101/70 to 108/64 most times) including orthostatic/postural hypotension (more dizzy when I get up), usually a high pulse rate. I always feel stressed/never relaxed and I can't take any form of stress/pressure whatsoever, it just feeds my extreme anxiety.

Most if not all of these symptoms are constant (except the stomach), that is, I always feel equally bad, and haven't noticed any ups or downs before/after eating. No "good days" or such when I get out and feel better.

Could this be some kind of food allergy, and perhaps more specifically gluten/wheat? It seems people can have all kinds of weird symptoms, but I don't know if having them constantly (rather than up/downs daily) would be normal in that case.

Other things I have suspected are among others low thyroid function (tested; doesn't seem like it), adrenal insuffiency/low cortisol (not tested, still suspecting a bit) and candida overgrowth, which seems to be quite controversial...

I'm thinking about trying a gluten-free diet for a while (how long?). I realize that you can't take accurate blood tests etc while not eating gluten, but my life is soo crappy right now, that I can't take any tests anyway!

Any help is very appreciated!

[darlindeb25]

To begin with, your blood pressure is not low, it's very good. Your numbers are just where you want your blood pressure to be, so don't worry about it. Ok, we can take that off your list. So many of your other symptoms could be alleviated by eating properly. First though, it sounds to me as if you do need an anxiety med, just to help smooth you out, calm you down.

I understand totally, those feelings you have, I have had them, honest I have. I was diagnosed with anticipatory anxiety, agoraphobia, and panic attacks when I was 27 yrs old and this all started, I feel, because of my undiagnosed celiac disease. I too, had motion sickness, anything moving made me dizzy too, I do understand. Have you seen a doctor? God knows, I knows its hard.

I had my first real, terrible panic attack after my daughter was 2 months old and I had to take her to see the doctor, yet one more time for her plugged tear duct, and I could not get out of the car, I could not open the doors to get out and I thought I was going crazy. This was when my family doc put me on Xanax and then I went for some therapy, which didn't help. Xanax is not the proper drug for anxiety, not to be given daily, and truthfully, until I was gluten free, nothing was going to help me because as long as the celiac monster was being fed, the anxiety was going to continue. Later, the doc put me on Paxil, which did help, I started out on 5 mg and by the time I went gluten free I was taking 40 mgs and still having panic, once I was gluten free for a time, I weaned myself off the Paxil and now, I keep Xanax on hand, just in case I have that rare panic attack.

I think checking into celiac disease is the next step for you, if you absolutely feel you can't do the testing, then yes, go gluten free and see what happens--feeling better is what you are striving for. Gluten free can not hurt you, but if you are going to do it, remember, gluten is in so much, you will have to research. It's in medicine's, soaps, shampoos, lotions, not just foods.

You really should have your doctor do a full blood work up first though, if you can get there and something like Celexa for your overall panic--just to calm you would be a good thing to try for now. Celexa is gluten free, but you should call on any generics, just to be safe.

Feel free to email me. Deb

[Tranquillity]

Wow, not only a very fast reply but a great one too

To begin with, your blood pressure is not low, it's very good. Your numbers are just where you want your blood pressure to be, so don't worry about it. Ok, we can take that off your list.

Yes, I know that it's good - as long as you feel healthy. As you can see, I don't

Might not have anything to do with blood pressure, of course. Some seem to have symptoms when below ~100-110 though.

So many of your other symptoms could be alleviated by eating properly. First though, it sounds to me as if you do need an anxiety med, just to help smooth you out, calm you down.

Actually, I'm on two already and have been on one for years. Not getting much help from them I'm afraid, but it did help for a while, a couple of years back. To be a bit more precise I'm on a SSRI (Fluoxetine, aka Prozac) and Remeron/Mirtazapine.

I've been on anti-anxiety meds too, the addicting kind that is, but not for a long time since both me and my doc knows about the addiction thing.

I too, had motion sickness, anything moving made me dizzy too, I do understand. Have you seen a doctor? God knows, I knows its hard.

Wow, really? So far it feels like I haven't found a single other person with that problem!

I think checking into celiac disease is the next step for you, if you absolutely feel you can't do the testing, then yes, go gluten free and see what happens--feeling better is what you are striving for. Gluten free can not hurt you, but if you are going to do it, remember, gluten is in so much, you will have to research. It's in medicine's, soaps, shampoos, lotions, not just foods.

Yes, it does seem to be a lot of work... Even before I knew about soaps and shampoos! Wow.

You really should have your doctor do a full blood work up first though, if you can get there and something like Celexa for your overall panic--just to calm you would be a good thing to try for now. Celexa is gluten free, but you should call on any generics, just to be safe.

I have a blood work from 3 weeks back, no celiac/gluten tests though, just the common stuff and some thyroid values. I do have an appointment, but in almost two months! I'm going crazy, I can't wait two months to BEGIN some kind of "treatment"/diet.

Anyway, many thanks, and I'll definately keep looking into it after reading your post!

Edit: I read a bit about common blood values, and it seems low B12/Folic acid/Iron is common in celiacs. All those values are high in me (iron is even slightly too high!). That doesn't rule it out though, right?

[Nyxie63]

Would you mind posting your thyroid values (with ranges)? Quite often, docs will tell us we're normal when they haven't a clue about optimal values. Huge difference.

I'd also definitely pursue the adrenal angle as well. Have you done a positional BP test? Lie down for about 5 minutes and then take your BP. Then stand up and take your BP again. If it goes up, that's normal. If it drops, then you could be looking at an adrenal issue. There are other self-tests you can do at Open Original Shared Link. You might want to consider doing a 24-hour cortisol saliva test. I recommend Diagnos-Tech's test as its the most comprehensive. I think canaryclub.org gives you a discount on the testing rate.

Going gluten/dairy free wouldn't be a bad idea either, particularly with the GI symptoms. It seems that a lot of these things are all interrelated. I'm just starting to learn about it myself.

[Tranquillity]

Sure. Thing is, the T4 value is high, but most of my symptoms makes me feel hypothyroid... Anyway.

TSH 3.24 (0.3-4.0) - I know it's a bit high.

Free T4 18.4 (9-18) pmol/L

T3 1.48 (0.9-2.5) nmol/L - it doesn't say "free" so I'm guessing total.

I did the stand-up-blood pressure test twice last week, it dropped by 15-20mmHg the first time and INCREASED by 15-20 the second. I should probably try a few times more... Anyway, it definately feels like it drops, a lot.

[Nyxie63]

Sure. Thing is, the T4 value is high, but most of my symptoms makes me feel hypothyroid... Anyway.

TSH 3.24 (0.3-4.0) - I know it's a bit high.

Free T4 18.4 (9-18) pmol/L

T3 1.48 (0.9-2.5) nmol/L - it doesn't say "free" so I'm guessing total.

I did the stand-up-blood pressure test twice last week, it dropped by 15-20mmHg the first time and INCREASED by 15-20 the second. I should probably try a few times more... Anyway, it definately feels like it drops, a lot.

You're probably not converting the T4 into T3. Either that or you're producing reverse T3, which isn't usable by the body. I suggest getting both your FreeT3 and your rT3 tested. You're not on any thyroid meds, right?

Keep track of how much salt you're consuming. I suspect when your salt consumption is higher, your positional BP is fairly normal. If you want to test this, do a salt fast for 24 hours and then try the positional BP again. If it drops significantly, then its most likely your aldosterone is low. This can also be determined by a blood test. Its best to get it tested first thing in the morning and make sure they run your sodium, potassium, and renin at the same time. You'll also need to do a 24-hour salt fast before getting your aldosterone tested.

[Tranquillity]

You're probably not converting the T4 into T3. Either that or you're producing reverse T3, which isn't usable by the body. I suggest getting both your FreeT3 and your rT3 tested. You're not on any thyroid meds, right?

Keep track of how much salt you're consuming. I suspect when your salt consumption is higher, your positional BP is fairly normal. If you want to test this, do a salt fast for 24 hours and then try the positional BP again. If it drops significantly, then its most likely your aldosterone is low. This can also be determined by a blood test. Its best to get it tested first thing in the morning and make sure they run your sodium, potassium, and renin at the same time. You'll also need to do a 24-hour salt fast before getting your aldosterone tested.

Heh, I've actually thought about the whole not converting and/or rT3 thing. It seems most if not all doctors considers that quackery, though.

Open Original Shared Link

Open Original Shared Link

Having that said, I don't think the whole thing is completely impossible. However, it could very well be caused by malnutrition and/or mineral deficiency (zink, selenium, and vitamin A/D - all those are needed to convert T4), which could in turn very well be caused by gluten intolerance.

I don't think my aldosterone is low. If I do have adrenal problems, I suspect it's secondary (the problem is in the pituitary gland), which would mean low cortisol but normal aldosterone. Blood levels for potassium and sodium were OK and pointing away from Addison's, too. (low-normal potassium, mid sodium).

The two blood pressure tests were taken the same day as I recall.

Anyway, thanks for the answers

It does seem like gluten can wreck havoc with pretty much anything in the body.

[CarlaB]

You might also check out Lyme Disease. Here's another thread with a lot of info on it. Open Original Shared Link

I had many of your symptoms (plus some) .... there is a complete symptom list on the thread I gave the link for.

[Nyxie63]

You're welcome! Sorry I couldn't be more help.

I don't buy into Wilson's Syndrome either. I've read his protocols and its much too wide a description and too simple a treatment. I think its really a combination of thyroid and adrenal issues which need to be addressed separately and treated by more than just T3. That being said, rT3 is real, although rT3 dominance is extremely rare.

And you're right. Its entirely possible that the conversion of T4 to T3 is suppressed by nutritional deficiencies brought on by gluten intolerance.

If you suspect hypopit, have you talked to your dr about an ACTH stim test?

[Tranquillity]

Thanks again for your replies

I've looked into Lyme a bit, and I don't know... It's not impossible, but I've felt slightly bad for almost 10 years (although much worse the last 6 months), so it seems a bit unlikely. We had a dog when I was a kid, though, and ticks are pretty common around here. I haven't been in many places where I might have been exposed recently (and I sure haven't noticed any odd rash or such). Again, not impossible, I'll keep looking into it a bit.

There aren't any rT3 blood tests around here unfortunately.

I have an appointment in mid december (ugh!) where I plan to ask everything I've been gathering up on, for instance thyroid antibodies, ACTH/cortisol test (+ stim test I guess) and much more. I can't stand waiting until then without doing anything though, so going gluten-free is my current idea.

I've been reading a couple of celiac stories, and most weren't very similar to mine, unfortunately. I suppose that doesn't rule it out, but still.

My high iron/B12/folate values are also pointing away from it, I guess?

Still, I'd MUCH rather have a life-long disease that is treatable/manageable (like celiac, or low adrenals), than to feel like this and just "accept" it.

[CarlaB]

I was exposed to Lyme over 35 years ago, and was only "really" sick for the past four years. Your immune system can keep it under control on its own for a while, sometimes forever .... for me, it was stress that made it turn to illness. I had various minor symptoms for years, but only got sick a few years ago.

There are many who have more of a chronic illness from Lyme than an acute illness. So, don't write it off too quickly.

I do NOT live in an endemic area ... I live in town ... I never saw a rash, though I did have ticks. Over half of those with Lyme never see a tick at all.

[gfpaperdoll]

High IRON ?? Check into Hemochromatosis - got any Irish genes in your family? I think this originally came from the celtics or Vikings, my Irish family has it, my father's brother died of hemochromatosis. The only other people that I know with this genetic illness happen to be people that also have celiac...

But if you catch it in time, the only treatment is to just give blood - under a doctors care...

for depression take a sublingual B12 about 5,000mcg a day (my friend take two of those a day) & see if that helps... even if your B12 level checked out okay - any excess will not hurt you it will be excreted thru your urine.

[Tranquillity]

High IRON ?? Check into Hemochromatosis - got any Irish genes in your family? I think this originally came from the celtics or Vikings, my Irish family has it, my father's brother died of hemochromatosis. The only other people that I know with this genetic illness happen to be people that also have celiac...

But if you catch it in time, the only treatment is to just give blood - under a doctors care...

for depression take a sublingual B12 about 5,000mcg a day (my friend take two of those a day) & see if that helps... even if your B12 level checked out okay - any excess will not hurt you it will be excreted thru your urine.

Hmm yes, I've heard/read about it a bit. You don't happen to know which blood values are used to calculate the transferritin saturation (which seems to be the most useful test), do you?

The values I have are (translated):

S-Iron 37 (9-34) umol/L

P-Transferrin 2.02 (1.94-3.26) g/L

P-Iron saturation 72% (15-60%)

My doc didn't think much of it, I guess, since I've heard nothing about it whatsoever.

The blood test was taken in the morning by the way.

Edit:

I've been reading more about all this (gluten). How careful do I have to be in order to notice the difference? It seems some people are extremely(!) sensitive, would I have to be super-careful to start with as well?

By super-careful, I don't mean check the contents of what I eat which is obvious, but rather do I need to wipe the table clean to make sure there ain't anything there, keep wheat-containing bread sealed in a safe, etc?

[gfpaperdoll]

Not sure about the hemochromatosis tests, there is a web site for it, you can goggle & get the site...

re being careful, you have to be more careful than you can imagine. do not open the flour canister - for instance that is the worst. & if you have people in the house eating bread/crackers everywhere, do not touch any of your food until you wash your hands, you touch the remote after someone who is sitting there eating pretzels or a sandwich & you touch an apple that you are eating - you will get zapped. Plus it just makes it harder to get over the craving, if you keep getting residual amounts each day. Your body will crave it until you get over the addiction, takes about 3 weeks.

re cross contamination, you might not notice this from day one but the longer you are gluten-free the worse it gets...

[Ridgewalker]

I second what gfpaperdoll just said. She is absolutely correct, even if you are not as "sensitive" as others, and even if you don't know for sure if you have a problem with gluten.

As a matter of fact, it's even more crucial for you to be that 100% careful, because you don't know. If you're not that careful, and the diet does nothing for you, you'll never know if it's because gluten isn't your problem, or if it's because you weren't careful enough.

For the trial diet to be valid, you need to be extremely strict with it.

[Tranquillity]

This doesn't seem to be very easy

Still, to stay on subject, do you think it's possible (likely?) for me to have some kind of food intolerance, going by the symptoms? Needless to say everybody might have some intolerance, but...

Anyway, I'm trying to remove gluten. I *think* I haven't had any since lunch yesterday. I look through everything I eat (plus toothpaste etc) but this is my first/second day so I'm no pro yet.

[darlindeb25]

I'd also definitely pursue the adrenal angle as well. Have you done a positional BP test? Lie down for about 5 minutes and then take your BP. Then stand up and take your BP again. If it goes up, that's normal. If it drops, then you could be looking at an adrenal issue.

Nyxie63, I guess I live in the clouds or something, I never heard this before or never paid attention. I may just try this one out. I have been trying to get an edge on this thyroid/adrenal angle all summer and am getting no where fast. Now, out of the blue, my blood pressure is on the rise. The doc I work for is sure it's the Topamax I am taking for headaches, prescribed by my neuro, but, I truly do not think it's the Topamax only because the blood pressure does not stay high. It's my life that is causing the pressure rise, it's stress, it's work, work stress and I just can't handle it anymore. My blood pressure has always run low, numbers like Tranquillity has and I have always been happy with that. This summer, the numbers started to rise, 120/70, 125/70, 130/70, 125/80, then the day it was 149/90, my doc says--hmmmmm lets do a echocardiagram of your heart, just to be sure. Thank God, my heart is good. Now I check it everytime I come across a blood pressure checkpoint and Sunday, while I was shopping and relaxing, of course, it was 105/65--it's not my Topamax.

Yes, Tranquillity, gluten does a number on many people in many different ways. Some people never even know they have a problem. They will find out they have celiac disease while being tested for a entirely different problem. Some people never even know they when they are being glutened once they go gluten free, personally, I feel they are the unlucky ones, because they can cause further damage and not know. My gluten reaction was always very severe, or at least I thought so, now, after the recent announcement about Xanax not being gluten free, now I realize, I have been glutened by my Xanax and not realized it was a gluten reaction, so now I wonder how many times I have been glutened before and not known! Scary thought to me! Many celiac's do have thyroid problems too. Well, many celiac's have many other health issues.

You sound like you have a good handle on searching--keep at it. I do wonder about the meds you are on for anxiety though. You shouldn't be on more than one, in my opinion, anyways. That's like taking one to support the other. Seems like those are not working, so it's time to try something else, something that might. I stayed with Celexa for 6 months and my doc and I agreed, it wasn't doing what we felt it should for me. We both agreed, for me, I need something for the moment, not something all the time, some people need something to level them out all the time. For now, maybe that is what you need.

Very interesting thread!

[Nyxie63]

Nyxie63, I guess I live in the clouds or something, I never heard this before or never paid attention. I may just try this one out. I have been trying to get an edge on this thyroid/adrenal angle all summer and am getting no where fast. Now, out of the blue, my blood pressure is on the rise. The doc I work for is sure it's the Topamax I am taking for headaches, prescribed by my neuro, but, I truly do not think it's the Topamax only because the blood pressure does not stay high. It's my life that is causing the pressure rise, it's stress, it's work, work stress and I just can't handle it anymore. My blood pressure has always run low, numbers like Tranquillity has and I have always been happy with that. This summer, the numbers started to rise, 120/70, 125/70, 130/70, 125/80, then the day it was 149/90, my doc says--hmmmmm lets do a echocardiagram of your heart, just to be sure. Thank God, my heart is good. Now I check it everytime I come across a blood pressure checkpoint and Sunday, while I was shopping and relaxing, of course, it was 105/65--it's not my Topamax.

LOL Deb! Don't worry about it. If I hadn't been dx'd with adrenal fatigue earlier this year, I probably wouldn't know about any of this stuff either.

There are some good self-tests you can do at home and info Open Original Shared Link. While that site refers to thyroid disease and adrenal function, its not uncommon for anyone who's had a long-term untreated or undertreated chronic illness to develop adrenal fatigue. I'm pretty sure your chronic stress isn't helping either.

My blood pressure has been slowly rising over the past few months as well. I'm not sure if its because my thyroid issues aren't being treated, or if its because drs appts are just becoming more and more stressful.

[darlindeb25]

Nyxie63, I remember trying that pupil test before and failing it badly! I just failed it again. My pupils constrict, then enlarge again and start to flutter, meaning adrenal insufficiency--yet the endo told me I am fine. When I saw the endo, my antibodies were high, my primary doc sent me to the endo because of my AB level and the endo just poopoo the level, told me I am high risk and to return in one year.

I eat maybe 900 calories a day, probably never over 1000 and I can't lose a #. People look at me and think I lie about what I eat, although people who know me well, know I am not lying about what I eat. I am overweight, but don't lose. My metabolism is not working at all, but I'm crazy.

I am at the point where I am ready to give up--throw in the hat. They tell me to walk, trick your metabolism, I do what they say, it drives my neuropathy crazy, all kids of symptoms start going crazy and I don't lose a pound! It's very aggravating.

[Nyxie63]

Nyxie63, I remember trying that pupil test before and failing it badly! I just failed it again. My pupils constrict, then enlarge again and start to flutter, meaning adrenal insufficiency--yet the endo told me I am fine. When I saw the endo, my antibodies were high, my primary doc sent me to the endo because of my AB level and the endo just poopoo the level, told me I am high risk and to return in one year.

I eat maybe 900 calories a day, probably never over 1000 and I can't lose a #. People look at me and think I lie about what I eat, although people who know me well, know I am not lying about what I eat. I am overweight, but don't lose. My metabolism is not working at all, but I'm crazy.

I am at the point where I am ready to give up--throw in the hat. They tell me to walk, trick your metabolism, I do what they say, it drives my neuropathy crazy, all kids of symptoms start going crazy and I don't lose a pound! It's very aggravating.

I fully understand your frustration. I fired my endo. She blamed all of my symptoms on perimenopause. Then when I asked her to test my hormones to find out for sure if that was actually the problem, she looked at me like I'd just asked her to do something obscene and asked "Why!?!?". She was arrogant and soooo patronizing! I half-way expected her to pat me on the head and give me a cookie.

I wouldn't have minded the cookie.

I think the biggest problem with adrenal fatigue is that most conventional medical practitioners don't believe in it. They think in terms of normal, Addison's, or Cushing's. They don't understand any inbetween. However, most alternative medical practitioners fully believe, test for, and treat endocrine disorders that the conventional medical establishment just brushes off.

A lot of endos won't treat thyroid disease until the TSH gets above 10 because that's what the guidelines say. What I just love (not) is the practice of "you're not sick enough to treat yet". Dude, wait. What? The patient has high blood pressure, high cholesterol, can't lose weight, lost a lot of hair and most of their eyebrows, tired, has joint and muscle pain, twitching, freezing all the time, anxious, depressed, and irritable....but their TSH is only 4.78 so they're not sick enough to treat. Gah!

I swear, some of these drs wouldn't treat us if we were on our death beds provided the test results all showed "normal". What they seem to forget is that there's a HUGE difference between "normal" and "optimal". They also forget that they're dealing with real live human beings, not just print on a piece of paper.

Hrm. Apparently this turned into a rant. Sorry about that. I tend to do that a lot lately.

Anyhoo, adrenal testing.... Check out www.canaryclub.org. You can order your own testing and it usually runs around $141. I recommend Diagnos-Tech's cortisol saliva test. The report is much more comprehensive than other labs. If you have the choice, I'd highly recommend finding another endo. Or maybe see if there's an Osteopath in your area. They're pretty good at not only listening, but actually testing for and treating people.

[darlindeb25]

So, let me tell you what my endo said to me about my AB level. When I told him my primary care doc sent me to him because my AB level was high he just laughed and said, "AB levels mean nothing, if your doctor sent you to me and said you have a uterus, so you might be pregnant, that would mean nothing either, just because you have a uterus certainly does not mean you are pregnant, does it?" That was the exact moment that I knew this arrogant ass was not going to be my doc EVER! That analogy had nothing whatsoever to do with thyroid and high antibodies, not in my book anyways. He was belittling my problems and I left there so upset.

Thank you for the ideas. My TSH has never gone over 2.58, but who is to say mine isn't normal at 1 and who's to say that 2.58 isn't way to high for me. I hate the words "normal range" because that just doesn't fit everyone. With eyes, everyone is an individual, why isn't it so with other things. I've never fit the normal range, why do they think I am normal now? I look at my eyebrows and I see the change, my hair hasn't thinned, but it is so much drier now and my hair has always been a source of pride for me, I have beautiful hair. My eyes are dry, driving me nuts, like I said, my metabolism is shot, my skin is dry, I hate this season coming, the static electric sets me on fire---rant, rant, rant!!!!!!!

Sorry Tranquilly, we are just kind of running away with your thread--sorry.

[Nyxie63]

Geeze! The endo was an idiot! Not only that, a dangerous idiot! If you have thyroid antibodies, you need to be on suppressive therapy.... yesterday! As long as your thyroid is producing, it will continue to undergo antibody attacks and you'll only get sicker and sicker. You need to be on total replacement therapy and looking at a TSH close to 0. No, I'm not kidding.

If you haven't done so already, I really suggest reading the rest of the STTM site. There's a lot of good info there. Also, if you want some really good thyroid/adrenal support or a place to vent about such stuff, check out the forums at Open Original Shared Link. I'm a regular on there and have found the people to be wonderfully supportive as well as incredibly knowledgeable. They might also be able to recommend a dr in your area who doesn't suffer from anal/cranial inversion.

I second that. Sorry Tranquillity! We seem to have gotten on a roll here.

[Tranquillity]

Haha, no problem. I'm not out of the woods regarding thyroid/adrenal problems myself, so this discussion could help me as well

I agree that having thyroid antibodies is a bad thing, and if somebody has them, AND low thyroid symptoms, replacement therapy should obviously be started ASAP!

Anyways, a bit more about myself

I've been reading a lot, but some questions aren't easily answered through searching, so a few questions if you don't mind...

1) Does it seem likely to you that I have some (especially gluten) allergy/intolerance? I think I asked this already though, lol, sorry if that's the case.

2) How long did it take for you to notice a difference? I don't mean full relief or anything, but rather, how long should I try this before I give it up and try something else?

3) I've been looking a bit at other allergies/intolerances (soy, corn, lactose, casein, nightshades). Avoiding ANY of those seems to be a real pain, and avoiding them all might just be impossible unless I literally live on fruits and water. Most of the gluten free stuff seems to contain one of potato/corn fluor or lactose, including my gluten free bread and pasta. Um, this wasn't a question. Anyways.

One last thing. My gluten free bread is made of wheat (de-glutenized somehow I guess), should I avoid wheat completely? It's made by the biggest gluten free producer around, so it's definately safe, UNLESS wheat itself is the problem.

If I have to avoid wheat completely things won't be as easy.

Also. "They might also be able to recommend a dr in your area who doesn't suffer from anal/cranial inversion."

[darlindeb25]

One last thing. My gluten free bread is made of wheat (de-glutenized somehow I guess), should I avoid wheat completely? It's made by the biggest gluten free producer around, so it's definately safe, UNLESS wheat itself is the problem.

If I have to avoid wheat completely things won't be as easy.

To begin with Tranquillity--WHAT????? Of course it's still wheat--wheat can not be de-glutenized--someone is lying! If you want to go gluten free, you most certainly must avoid wheat completely, wheat, rye, barley, and I believe oats too. No one said it would be easy, but if you really want to see if gluten is your problem, then avoiding gluten totally is the only way to know for sure!

The time frame is different for everyone. Some feel better immediately, some take a few weeks, some take longer. Some also have to give up dairy in the beginning, some don't--I didn't.

I can't have soy, corn, rice, nightshades, red meats, cruciferous veggies, and gluten. But, I did not lose them all at once. First was gluten. I felt much better, then I realized soy was giving me problems and I gave it up. Then on Christmas one year, I made cornbread stuffing and got very sick, that was when I started testing corn out and soon found corn was a problem. Soy and corn constipate me more so that anything, but also, if I get them in my system, I break out in a deep red rash on my tummy. Later in that year, Tomatoes made me very ill, then potatoes---each item was added singly--I never gave up anything all at once, except for the glutens. It all happens by trial and error. Finally, after 7 yrs, my tummy is pretty much on an even keel anymore, that's amazing in itself for me. I try not to "upset my applecart" so to speak.

Now I am focusing on my other medical problems and when doctors try to tell me that maybe I am not celiac, I tell them I know I am and that I am not seeing them for their opinion on celiac disease, that I am gluten intolerant, will be gluten free for the rest of my life and now, lets concentrate on why I came to see you. They sometimes do not like me for that opinion, but it doesn't matter, I am a celiac and they can't change that--lets move on.

So, you have to make up your mind if you want to try this gluten free life or not. It's not a diet, it's a lifestyle and for most of us, it's forever. We will help you as much as we can.

Nyxie, I am going to check out that forum later--gots to go for my walk now--thank you for the info.

[CarlaB]

Tranquility, in Europe there are different standards for what gluten-free means. They allow a certain number of ppm (parts per million). To be truly gluten-free, you need to avoid all gluten, which means ALL wheat, oats, barley and rye.