New Here, Lots Of Questions

[freedomart]

hello, everyone,

I'm Amy. I just want to tell my story here as an introduction to who I am and possibly to get some feedback from others who have gone through similar issues. I'll start from the beginning. I am a female, 27, 5'1, mostly Irish descent, living in Upstate NY. My grandfather (without Irish ancestry), mother and 3 out of 6 siblings are officially diagnosed with Celiac Disease (the other 3 have not been tested, though all have some of the less striking symptoms). I took the test last year (though not the best one) and it came back negative, but did not have the biopsy (money issue). Three days ago, I decided to go on the gluten free diet because I am sick of being sick and everything points to Celiac. Out of money issues and just fear of invasive procedures, I do not wish to, nor do I think I need, a diagnosis, to change my lifestyle, and there is no guarantee I would get one even if I do have Celiac. Although the money issue is going to be interesting in buying gluten free products.

My health history goes a little like this:

toddler-allergy to corn recognized, which I subsequently do not have (or at least not as strong or not manifested the same way)

late childhood-late teens--extreme constipation and bloating (I went years barely going once a week), which has changed to moderate

12-allergy to red #40 recognized---neurological and digestive reaction

13-20-debilitating PMS, still a bit of an issue, large breasts somewhat the cause of cysts.

14-diagnosed with Hypoglycemia, Lymes Disease (though never had the ring) and osteoarthritis in the cervical vertebrae (caused or exacerbated by a fall down the stairs...though, osteoarthritis at 14?)

15-diagnosed with Fibromyalgia, hit a major depression which went undiagnosed. Put on 10 mg amitryptyline to help me sleep.

16-extreme neurological reaction to MMR vaccine---numbness and tingling for a few weeks (I since avoid vaccines)

16-current today--chronic sinusitis

20-diagnosed with Myofascial Pain Syndrome, changed to notryptyline, allergy to peanuts diagnosed.

21-diagnosed with Obsessive Compusive Disorder (had symptoms from 5 years of age), put on Celexa, along with nortryptyline

24-diagnosed with Major Depressive Episode and Post-Traumatic Stress Disorder (lots of life changes and losses happening at the time), changed to Zoloft and Anafranil and went off nortryptyline

routine medical tests through the years have also randomly revealed anemia, low blood sugar, low blood pressure, tachycardia, slightly high white blood count, etc.

I recently decided, after reviewing my medical history, especially the one connected to the psychiatric system, and because of the relative stability of my life right now, to go off of psychiatric drugs. Going off of Zoloft was very succesful. Ananfranil has been harder, as far as withdrawal, even going off over a period of months, but I started noticing the most astounding thing...how I feel physically when I eat certain foods. Psych. drugs can really make you zoned out to how you feel on an emotional and physical level. Reading the literature, I wonder if these drugs I have been on for so long have gluten as a binder. Anyway, I realized I feel the best after just having fruit (love fruit), most veggies and rice, and more bloated and irritable after breads, and even dairy and soy. I used to gorge on dessert items in an effort, I believe, to get a sugar high from lack of nutrition, but am realizing when I am full I do not crave them.

Beyond the absence of diarhea, the profile looks pretty typical for someone who is uncovering Celiac later in life. (I haven't mentioned other things that might contribute, like not having been breastfed, birth canal trauma, being the child of older parents, etc.) I truly believe I am starving, and have been for some years. Thank God my siblings took the bull by the horns and got diagnosed.

Getting diagnosed is not a priority for me right now. I know there is that whole controversy about needing the diagnosis, but, honestly, after only 3 days on the diet, I feel better (if only that I don't have as much bloating and irritability after meals), so I don't ever plan to go back, esp. if I notice more improvements in the long term. The medical community has failed me and I am ready to do this on my own, with their consultation (vs. their direction). I am looking in the area for a good nutritionist. I still need to find what foods I am sensitive to, beyond glutenous ones. I also know I will need vitamin and mineral supplements, at least initally. I have never been one to cook much so this transition will be very hard, though I suppose anything is better than starving! I have over the past few years become somewhat of a vegetarian, only eating white meat occassionally, b/c of the cost of non-GMO meat. I am very politically radical and eat mostly organic. I do believe I will have to add chicken and turkey back into my diet (I especially love turkey!) and possibly take most dairy and soy out. Will need to find a recipe for a good vegan pizza w/o soy cheese! For right now soy and dairy are still in.

Anyway, that's the long and short of it. I hope that this community is open minded to folks who have been daignosed with mental health disorders. It is an inescapable part of my struggle, I believe, with gluten. It also is part of my history as an adult survivor of childhood emotional and physical abuse...at the hands of my mother who, although diagnosed as Celiac, was not on a completely gluten free diet---unbeknownst to her). I choose not to think of myself as having a mental illness (as these are clusters of thoughts and behaviors rich people put a label on), so I am not looking for medical help with any of that, but I do associate as a trauma survivor, with all of the emotional and physical issues that go along with it. My time on medication and in some therapists offices has stalled my healing process, but I believe, so has my time starving my body of nutrients.

As I said before, I was just looking to say hi, and put myself out there. If you have any thoughts or tips, (I can use all of the help I can get as I embark on this journey) feel free to respond. Know that I won't entertain a discussion or advice on letting big pharma back into my life. I will similarly respect everyone's wishes on here. In my day job, I am a community organizer and advocate, and have a strong spiritual belief in the importance of put lucks and non-violence.

More than anything, I need a cheap, fast way to be gluten free and healthy (don't we all?)

In solidarity and no longer a victim of Big Pharma and Big Agriculture,

Amy

[Jestgar]

Wow, painful story. I'm sorry that you had to go through all that to get here, but happy to hear that you're already starting to feel better.

I think you'll a lot of people on this forum who don't feel the need for an official diagnosis, and respect the fact that you are taking charge of your health.

Welcome!

[dlp252]

Hi, don't really have any advice or tips other than to say that perhaps staying away from the "processed" and/or "packaged" gluten free foods might help save a bit of money...sticking to the basics like protein, veggies and fruits might help.

Really just wanted to say welcome!

[hez]

Hi Amy! Welcome to the board.

There are many people on here that do not have a official dx. I feel all forms of dx are acceptable! I would think that the cost of gluten-free food would not be too different. You will continue to eat organic fruits and vegies as you have already been doing. You thought the only added cost would be for orgainic chicken/turkey. Since you are single a small amount will go far!

I am glad you are here.

Hez

[elonwy]

Welcome, I hear you on the drug issue. I have no problems taking stuff I know I need, but the tendency to throw antidepressants at people instead of trying to actually figure out whats wrong with them is rather appalling.

Over the years before we discovered Celiac I was told over and over again that I was depressed and needed to be medicated, or that I had Fibromyalsia (spel?) and anti-depressants and taking it easy would make me feel better. That was the last thing I needed, and I fought every step of the way. Anti-depressants make me feel worse, not better.

Now that I've been gluten-free ( I was lucky to have a positive blood test and a semi-positive biopsy, so I've got a diagnosis, though i had already figured it out before they'd done the tests) I no longer have the symptoms ( other than with occasional accidental ingestion).

Funny thing is, I was talking to someone just the other day about OCD. I used to have borderline OCD behavior with certain things, that was remarked upon over the years but never really done anything about because it didn't interfere with anything. I haven't had that twitch in who knows how long. Not saying the diet will cure you, by any means, just an observation on my part of "hey that wierd thing is gone now too".

But I ramble. Welcome. My mom is pretty successful at doing the vegetarian/gluten-free thing, though she should eat better than she does and can have dairy, though we're wondering about soy now. Its not impossible.

Hope you feel better

Elonwy

[hathor]

Congratulations for taking charge of your health. That's the first step. Then realize that each day you take care of yourself you are going to be getting a little better.

My suggestion -- and feel free to ignore it if this isn't what you are up for right now -- is that you should go on an elimination diet. You have found a number of food allergies/sensitivities so far. Rather than finding them out by chance or luck, it might be worth it to you to figure out, once and for all, what you can eat or not. Here is one explanation of the different problems food allergies can cause and how to diagnose them with an elimination diet:

Open Original Shared Link

Basically, you start out with those foods that hardly anyone reacts to. Then you add in other foods, one at a time, slowly enough that you can tell you WHAT you are reacting to if you do have a reaction. It is a time-consuming process, but may end up more efficient than finding this ingredient or that over the years that you can't tolerate.

I have read the stories on the McDougall site of those who went on elimination diets, cut out what bothered them, and solved any number of health problems. (The McDougall diet is a no animal product/ no added fat approach; if you are interested there is a lot of medical information on the web site -- it may be a diet that works for you, given what you say about the food that seems to agree with you the most).

I don't know why you say you will "have" to add back in chicken and turkey. Could you elaborate?

Vegan pizza without cheese isn't that difficult. You just make a pizza and leave off the cheese. It is more important to find a good sauce and add some nice toppings, though. I can't make a recommendation for the crust because I've only been gluten free for a little over a week now and I haven't solved that problem yet

[freedomart]

Thanks for the reply! Lots of helpful info...I will be checking out the elimination diet web info. I think I will have to add back in chicken and turkey as I really feel soy and dairy are a problem for me (though cheese not as much as milk and yogurt) and there is little other source for protein, other than nuts and beans. I am allergic to peanuts and can't imagine just stuffing almond after almond down my face...and beans, though good, cannot be my only proten source. As a rule, I am not against killing animals for food...and there is a long history of hunting game (esp. turkey, deer, etc.) that I believe is part of what our bodies now, evolutionary-wise, desire. I am against the way animals are treated and farmed, which is why I will be buying free range and non-engineered meat. The newer meat sources, like beef, are as problematic, I believe, as the relatively new addition of dairy and wheat into our diets. There is an interesting article on this site about the evolution of Celiac with agriculture and the more recent food industry.

As far as pizza, I make a kick butt tomato sauce. again, the lack of protein issue arises, but, I am sure I will find a way around all of this.

thanks, again, for your help. and good luck as you start the diet, also!

take care-

Amy

Congratulations for taking charge of your health. That's the first step. Then realize that each day you take care of yourself you are going to be getting a little better.

My suggestion -- and feel free to ignore it if this isn't what you are up for right now -- is that you should go on an elimination diet. You have found a number of food allergies/sensitivities so far. Rather than finding them out by chance or luck, it might be worth it to you to figure out, once and for all, what you can eat or not. Here is one explanation of the different problems food allergies can cause and how to diagnose them with an elimination diet:

Open Original Shared Link

Basically, you start out with those foods that hardly anyone reacts to. Then you add in other foods, one at a time, slowly enough that you can tell you WHAT you are reacting to if you do have a reaction. It is a time-consuming process, but may end up more efficient than finding this ingredient or that over the years that you can't tolerate.

I have read the stories on the McDougall site of those who went on elimination diets, cut out what bothered them, and solved any number of health problems. (The McDougall diet is a no animal product/ no added fat approach; if you are interested there is a lot of medical information on the web site -- it may be a diet that works for you, given what you say about the food that seems to agree with you the most).

I don't know why you say you will "have" to add back in chicken and turkey. Could you elaborate?

Vegan pizza without cheese isn't that difficult. You just make a pizza and leave off the cheese. It is more important to find a good sauce and add some nice toppings, though. I can't make a recommendation for the crust because I've only been gluten free for a little over a week now and I haven't solved that problem yet

[/quo

[freedomart]

thank you, Elonwy!

I think the psychiatric issues that stem from malnutrition can really be profound. I work as an advocate for people who have a mental health diagnosis, and I wouldn't be suprised if for 1/3 of them, it wasn't dietary in some way.

It was comforting to hear you have had a similar history with diagnosis and drug pushing. From what I have heard, lots of folks with Celiac have or have had Fibromyalgia.

look forward to hanging around!

take care-

Amy

Welcome, I hear you on the drug issue. I have no problems taking stuff I know I need, but the tendency to throw antidepressants at people instead of trying to actually figure out whats wrong with them is rather appalling.

Over the years before we discovered Celiac I was told over and over again that I was depressed and needed to be medicated, or that I had Fibromyalsia (spel?) and anti-depressants and taking it easy would make me feel better. That was the last thing I needed, and I fought every step of the way. Anti-depressants make me feel worse, not better.

Now that I've been gluten-free ( I was lucky to have a positive blood test and a semi-positive biopsy, so I've got a diagnosis, though i had already figured it out before they'd done the tests) I no longer have the symptoms ( other than with occasional accidental ingestion).

Funny thing is, I was talking to someone just the other day about OCD. I used to have borderline OCD behavior with certain things, that was remarked upon over the years but never really done anything about because it didn't interfere with anything. I haven't had that twitch in who knows how long. Not saying the diet will cure you, by any means, just an observation on my part of "hey that wierd thing is gone now too".

But I ramble. Welcome. My mom is pretty successful at doing the vegetarian/gluten-free thing, though she should eat better than she does and can have dairy, though we're wondering about soy now. Its not impossible.

Hope you feel better

Elonwy

[freedomart]

thanks, Hez!

looking forward to seeing you around cyberspace

Amy

Hi Amy! Welcome to the board.

There are many people on here that do not have a official dx. I feel all forms of dx are acceptable! I would think that the cost of gluten-free food would not be too different. You will continue to eat organic fruits and vegies as you have already been doing. You thought the only added cost would be for orgainic chicken/turkey. Since you are single a small amount will go far!

I am glad you are here.

Hez

[freedomart]

hi, dlp252,

thanks for the welcome! I will be researching good sources of protein, esp. if I decide to go off soy and dairy (though cheese doesn't seem to bother me as much)...and I have an allergy to peanuts. any ideas?

well, I just look forward to getting involved in this whole gluten free lifestyle.

thanks!

Amy

Hi, don't really have any advice or tips other than to say that perhaps staying away from the "processed" and/or "packaged" gluten free foods might help save a bit of money...sticking to the basics like protein, veggies and fruits might help.

Really just wanted to say welcome!

[freedomart]

Thanks!

I feel better just having this support for the diet.

good to meet you!

Amy[

quote name='Jestgar' date='Jan 16 2007, 02:49 PM' post='258071']

Wow, painful story. I'm sorry that you had to go through all that to get here, but happy to hear that you're already starting to feel better.

I think you'll a lot of people on this forum who don't feel the need for an official diagnosis, and respect the fact that you are taking charge of your health.

Welcome!

[Rusla]

Welcome Amy, you will find good information and good people on this site. With your family history and history of problems I feel you pretty well have all the diagnosing you really need.

[dlp252]

hi, dlp252,

thanks for the welcome! I will be researching good sources of protein, esp. if I decide to go off soy and dairy (though cheese doesn't seem to bother me as much)...and I have an allergy to peanuts. any ideas?

well, I just look forward to getting involved in this whole gluten free lifestyle.

thanks!

Amy

I can eat beans, so that helps for me. I do eat meat too, but stick to turkey, game hens and beef mostly... I can't have dairy at all and I really miss it, lol. Also love peanuts but I'm thinking they don't love me. I am currently trying an elimination diet to find out all the various foods I might be sensitive to and peanuts, soy and mangos have so far been problematic. I was also relying on nuts fairly heavily but they also are out right now.

[missy'smom]

thank you, Elonwy!

I think the psychiatric issues that stem from malnutrition can really be profound. I work as an advocate for people who have a mental health diagnosis, and I wouldn't be suprised if for 1/3 of them, it wasn't dietary in some way.

Amy

Welcome.

Good for you. Glad to hear that there is someone out there doing this. I agree. My mother was institutionalized by my father 2 decades ago(long painful story) and I believe that most of her problem came from undiagnosed Celiac(I've done some detective work recently).Unfortunately she didn't get any help and so much damage was done that she has always lived in assisted living facilities. This is heartbreaking for me now because I know now how much better life can be gluten free and think of all her suffering and wonder if she's even getting the help she needs now(she's on a gluten free diet now but I don't know if they can handle it).

[hathor]

If you eat a normal plant-based diet, you will get enough protein. It isn't necessary to have meat, dairy, soy, nuts, or stuff yourself with beans. Actually Americans on average get way too much protein and it isn't good for them.

See Open Original Shared Link and the linked articles.

I don't eat meat or dairy. I only have a smidge of soy over the course of the week and nuts I've limited to special occasions; I could do fine without either. Beans I have, or don't have, as the mood strikes me. I don't feel the need to have them every day and I don't. The starches in my diet provide as much protein as I need. Of course, the US government is never going to admit this, given the power of the meat and dairy industries. But you can read about the studies yourself and make up your own mind. (Don't rely on my bare opinion -- I'm just some stranger on the internet )

I'm not trying to get into an argument about the pros and cons of vegan diets, since this board is not about that. I just wanted to give you some resources for further study, if you are interested. If you want to talk about this issue more, you can always come over to the McDougall discussion board. Check out the information on his site, order his DVDs, or check out one of his books. Whatever you decide about that, I still think it a good idea to try methodically to find out what all you may be reacting to in your diet.