Where To Go For Assistance?

[Julie M]

I started feeling bad in May, had colonscopy, CT scan of abdomen, and complete blood work and no answers - save the dx of IBS. I finally found a naturopathic doctor who steered me toward the saliva and stool tests. I am gluten, soy, and egg intolerant. Severely gluten intolerant. This diagnosis has allowed me to a new GI doctor who is going to biopsy to look for celiac.

The naturopathic doctor is not covered under my insurance. As much as I appreciate her help, I feel like I am in the trap of her vitamin/supplement business. My MD is appreciative of her diagnosis, but doesn't know what he can do for me.

I can't afford to keep going to her, to keep taking her supplements. The first month I spent $450.00 on vitamins and supplements alone. I have been faithful in my diet. While I feel much better than I did in July, I still feel lousy. I still can't fit into some of my clothes from the bloating. She has diagnosed me with too much bad bacteria in my gut, with osteopenia, with hypothyroidism. I am starting to feel like I am being taken.

I have become my body's advocate over the last few months - but- my knowledge is limited. Is it possible for me to get to the point where I know what is best for me?

You all have more experience with this than I. I am just so grateful to have stumbled on this website. If I sound like a whiner, please forgive. I have never known anyone with food intolerances. I feel rather isolated.

Another question- My naturopathic doctor thought that it would be impossible to be glutened from using the same toaster as I use for my daugther's wheat toast. But - I am sure that I read that in more than one place. Do any of you know of some resources that will help me from being glutened?

Thank you for listening.

[dlp252]

Welcome Julie!!!

I know now you feel about being taken...it really seems sometimes like that's what's happening. I DO think supplements can help some people, but I don't think they're always the answer for some of us. There are several of us here who are struggling to find all the answers. For me personally, I improved a great deal after cutting out the gluten and dairy (both of which I showed intolerance to on the stool testing by enterolabs)...for instance, I used to have nearly continuous sinus infections before that, but after cutting out the gluten/dairy haven't had even one in almost a year! Still I am not completely well either...the struggle to find out why is sometimes frustrating...so just really wanted to welcome you and to say that there are quite a few of us out there still trying to find all the missing pieces (if you are brave you can check out the VERY long thread "OMG, I think I can eat dairy again" thread (it's almost 500 pages long now, lol)...there is a lot of chatter there, but there is also a lot of information from those of trying to find the missing pieces)!

[CarlaB]

This is your best resource for education to keep from getting glutened, and yes, you can get glutened from a toaster.

If you are gluten-free, the biopsy will not be accurate. Even if you were eating gluten, they still have a high false negative rate. Dietary reponse is actually the best indicator of gluten intolerance.

I wouldn't keep going to your naturopath if you can't afford it. I don't spend NEARLY that much on supplements and I take A LOT of them! You CAN find substitutes for her recommended ones that you feel are helping you at a health food store.

Does your naturopath have you off dairy? I'd bet there's a good chance that's where your bloating is coming from.

I'm sure others will chime in with good advice ... we all come at this with a slightly different angle, and you just have to research and find the best fit for you. I found that a diet to support my adrenal fatigue, in addition to gluten-free has been a lifesaver, literally. Others have vitamin deficiencies, candida, anemia, diabetes, etc. There is a wealth of information here! Just keep asking questions!

Welcome! You won't feel isolated here ... this is where we all come to feel normal!

[happygirl]

Yes, you can be glutened through a toaster that has wheat crumbs all in it. Its referred to as "cross contamination" (i.e., safe ingredients, but prepared in a way that has touched gluten containing source." The same goes for butters, mayos, dips, etc (they need to be used exclusively for only gluten free food...so if there is double dipping, it is SAFE).

Hope this helps answer a part of your question.

[kbtoyssni]

You may want to reconsider whether or not you want to get a biopsy done to test for celiac. If you already know you're gluten intolerant, you need to be on a gluten-free diet. Whether or not you have celiac is not going to change that.

Right now you may need vitamin supplements because your intestines are unable to fully digest your food, but you can probably get cheaper ones at the local drug store. After a few months of being gluten-free, your body should start absorbing more food, and you may be able to discontinue some of the supplements.

Yes, you should get your own toaster. You'll also want to make sure you're not sharing wooden spoons/cutting boards, scratched pans, or sponges for washing dishes. If you spend enough time reading threads here, you'll probably learn everything you need to know.

[tarnalberry]

Celiac disease often leads to osteopenia, is well documented to be connected with hypothyroidism, and some believe it leaves you prone (before going gluten-free) to growing too much bad bacteria in the intestines. So the 'multiple' diagnoses are not surprising - these are things that go together quite well, actually. That said, there is *no* reason to take that much in the way of supplements.

It will take some time on the gluten-free diet to feel better. While you are trying to master the diet and the nuances, please keep reading the forum for the little things - like contamination from the toaster and cutting boards and cast iron pans and hidden ingredients and vitamins, and working with both doctors (if it feels right), but don't be afraid to say "no" when you need to.

[eleep]

Everyone else is giving great advice, so I'm just going to chime in to say that I also don't spend nearly that much money on supplements either and I take quite a few of them as well! I did consult with my doctor, but I also used this board to do research on the kinds of supplements that might be most effective for me.

eleep

[Julie M]

Thank you all so much...I had to take a day from work today, as I have contaminated myself in some way. Reading about cutting boards, toasters, wooden spoons, and cast iron pans - well- I have used all of these in the past day or two. Good grief, it's all a bit overwhelming at first, isn't it?!?

I spent a few hours on the forum today reading. I am so grateful for such a large community of folks who 'get it.' I am going to a yearly event with dinner tomorrow and have already planned the dinner that I will have to take.

Did any of you ever get to the point where you had too much input? I would like to stop time for a day or two to process.

If there weren't this forum, this would be so incredibly difficult.

Thank you again.

Julie M

[kbtoyssni]

Thank you all so much...I had to take a day from work today, as I have contaminated myself in some way. Reading about cutting boards, toasters, wooden spoons, and cast iron pans - well- I have used all of these in the past day or two. Good grief, it's all a bit overwhelming at first, isn't it?!?

I spent a few hours on the forum today reading. I am so grateful for such a large community of folks who 'get it.' I am going to a yearly event with dinner tomorrow and have already planned the dinner that I will have to take.

Did any of you ever get to the point where you had too much input? I would like to stop time for a day or two to process.

If there weren't this forum, this would be so incredibly difficult.

Thank you again.

Julie M

Yes, it is extremely overwhelming at first. And you can't take a break to let some of the information "digest" (pun intended You can't just not eat for a few days while you think about things. At first I found it helpful to have several "safe" foods - rice, apple sauce, tortilla chips. It wasn't the healthiest, but it gave me time to research other foods and slowly introduce them once I was convinced they were ok for me to eat.

[dlp252]

Did any of you ever get to the point where you had too much input? I would like to stop time for a day or two to process.

Oh yes! Almost daily sometimes, lol. My brain can only process so much at any one time.

[eleep]

My head just about exploded with all the "newness" last spring and it's only now that I'm starting to feel like there's enough room in it for me to start having opinions about anything but my diet and health again!

eleep

[annacsmom]

Just another note - please be sure the supplements you take are gluten free. And make sure if you take a vitamin e, that's it's not from wheat germ oil. We found out the hard way. And welcome - this forum is a wealth of information.

[2wheels4eyes]

I was told by my doctor (affiliated with the Mayo Clinic, no less) that taking supplements the first few months isn't actually all that helpful since your gut hasn't healed yet so you're not really absorbing them anyway. Our bodies don't process most of what we take in pill/concentrated form anyway. There was a study done a couple of years ago, I think at Hopkins, that concluded that North Americans have the most medicated, vitamin'd, etc., thus the most expensive, pee on the planet. The typical supplement-consuming American has more nutritional content going out daily than the average third world citizen has going in. Sad and stupid.

That said... taking a general multivitamin, a calcium citrate w/ vitamin d, and iron if you're female is probably a reasonable, and reasonably priced, thing to do. Just don't take the calcium and the iron together--they compete for absorption.

Maybe it's my science background but I'm wary of diagnoses in the absence of clinical tests. That might make me unpopular around here... I have no problem with people experimenting with their diets, etc., and becoming as informed as possible about their health and their choices, deciding to go gluten-free on their own, etc. But I'm *extremely* suspicious of alternative health care practitioners who are unlicensed, do not have to answer to any professional or peer review board, give multiple diagnoses in the absence of clinical proof (e.g. were you given a bone scan to verify the osteopenia?), *and* who charge hundreds of dollars for services that they say will be necessary for indefinite amounts of time.

Despite my youth, I have had ongoing back problems for years and have seen a number of massage therapists, physical therapists, chiropractors, etc. I met several who told me I was "just a bad back person" and would require (frequent, expensive) treatments for life to manage my pain. Then I saw a sports medicine/chiropractic doctor with actual credentials, extensive training, an ongoing research program, professional affiliations, etc. Within 3 months I was pain free and my back stronger than it has ever been. Real health care practitioners want to heal you. They're not afraid of "working themselves out of a job" if they're too successful--because they know for every patient they heal they've got a waitlist of referrals.

Sorry for the rant... some of my best friends are reiki people, lol... just angers me when I see people whose choices have been limited, rather than expanded, by their health care.

[Adelle]

My gut (no pun intended) tells me that you are being taken advantage of. $450/month is rediculous. I'm all for supplements (provided they are gluten free ofc), but that is just too much!!

And yes, this is overwhelming!! You certanly aren't alone! Don't worry too much, it's impossible to NEVER get glutoned. It takes everyone a while to get used to this.

[pixiegirl]

Hi Julie,

I wanted to say hi and lend some support... (as so many others have done, this list is a great place for info and support).

It can be overwhelming at first... and because there are so many "side" issues with gluten, like cutting boards, wooden spoons, wheat in many vitamins... it takes most of us a while to get totally well, partly because of the time it takes us to figure it all out and because it takes time to heal.

I'm really organized and when I found out I had Celiac I went at it like a vocation, I'd say in a month I understood what I needed to do.... however it did take a few months at least to get it all done (especially to figure out what vitamins I could take, which soaps, shampoo's etc.)

I got a lot better.... however I did not get totally well, so a year after going gluten-free I finally had a GI scope both ends (too much info, I know...) and we found out I had another condition as well... called Eosinophillic Gastroenteritis. This condition is related to food allergy and I'm now dealing with that.

So... while I had another issue (and a number of people here have other things going on as well) I think if you find a good GI to work with it will help (and many of us have lost a lot of faith in doctors, it took me 11 years to get diagnosed), but a scope I think will give help you figure out what is going on. Make sure the doctor tests/looks for other things while he is in there! We went looking for... well it was more exploratory then anything else we didn't know what we were looking for, but I'm thankful my GI knew about EG and did the biopsys for it. The good news is my avoidance of gluten is working my scope showed no signs of Celiac!

My point is, its a long road and it takes a while to figure it all out, hang in there and this list will help you. I'd skip the vitamins at this point a lot of them contain gluten and I don't think anyone needs $450. a month worth of vitamins.

Susan

[imsohungry]

Hi Julie!

I had a chiropractor get me caught in the same type "circle" you speak of. He came up with many things wrong with me and then wanted to put me on many different products that he sold (and like your case, he wasn't covered by my insurance). I did it for a few months, and then the money (and my patience) ran out.

If you can find a good GI or even a good GP, who will support you, you can actually get a prescription for the more powerful vitamins. My prescription folic acid, etc. costs 3.00 a month each! (a lot cheaper than when I was buying them off the shelf)

I would say to go with your gut instinct on this. Also, one of my most supportive doctors is a DO instead of an MD. They have medical training...the only difference is that a DO treats the "whole person" (instead of looking at one physical part at a time, they recognize that the body interacts with itself and the person's "psyche").

Yes, and like others said, get a seperate toaster.

Hope you feel better and find answers soon! -Julie

[tiredofdoctors]

Welcome Julie! It IS overwhelming at first . . . and as someone else said, sometimes on a daily basis, as well!!!!

I got caught up in the whole supplement thing with my GP -- he was a big believer in naturopathic medicine, but he was really running a racket. We have since found out that he has opened yet ANOTHER clinic, in another town closeby, under a DIFFERENT name. This is the fourth one he has opened in as many years. Makes you kind of wonder, huh???

I was spending a LOT on supplements from him. I finally found a regular ol' GP, went to a dietician, and SHE told me, according to my lab values, what she recommended with regard to food choices, and sent me to FREEDA Vitamins. They're EVERYTHING free!!!!! I've been very happy with all the products which I have ordered.

Have you gotten a "Newbie" kit yet? Nini (Nisla) has put together a fantastic kit for people newly diagnosed . . . I don't know what link it is, but I KNOW the others who have posted here do!!! It will give you a really good beginning with regard to going gluten-free.

Good luck to you . . . . like pixiegirl said, this IS a great place for info and support . . . . sending ((((hugs)))),

Lynne