Another Newbie, Kind Of.

[Chicklet]

I have been hanging out here for a few months now, oh maybe six in total. I'm not sure I have celiac disease but I saw a post on a board for homeschoolers and my symptoms fit. So I came here and found out more info. The symptoms sounded so much like what I had I decided to try going gluten free for a month and see what happened. Well I didn't need the full month, in two days I felt much better.

I have since gone back to eating gluten with bad results. So no Doctors diagnoses just find that when I eat gluten free I feel great and when I eat stuff with gluten not so good. So I'm now trying to get myself gluten free and keep it that way.

I do think that it might just be wheat for me but how would one find out for sure?

Oh, I only started suffering about 2 years ago or so, before that I could eat almost anything without much trouble except heartburn which is now gone. Don't know what else to say.

I had a muffin from Kinnickinnick, ate 1/4 of it last night and the rest today, it was so yummy. I haven't had a muffin in a while and really do miss them. I will be going out to Kinnickinnick this week to stock up.

Marie.

[Lisa]

Hey Marie

Welcome to our world.

I wish that I knew a little bit more about you so I can be helpful to you.

Some people here have a gluten allergy and other are intolerant of any gluten. We have a very wide spectrum of people with a wide variety of sensitivity. Never the less, gluten is not good for all of us.

I am glad that you have been feeling better with out ingesting gluten. Keep reading these post and I am certain that you will be more informed than any professional could provide for you.

If you have any specific questions to ask, please feel free...there are no questions that go unanswered.

Lisa

[breann6]

ya know, response to the diet is better than any test result because that can't be botched per say like lab results. you could get blood tests or biopsy; and confirm or deny your dietary findings- which have a good chance of being inaccurate....im a huge fan of trying the diet and diagnosing that way

welcome to the board!! hope your feeling better in no time....and those kinnickinick muffins are good- i made pamelas with fresh blueberries last weekend and i think they are better- but both are delicious

~breann

[happygirl]

Welcome to the board!!!! We are happy you have officially joined us. I encourage you to read, read, read, do searches, read some more, and ask ANY question! We'll be happy to help.

You said, "I do think that it might just be wheat for me but how would one find out for sure? "

Well, there are two ways.

1. Go gluten free. Which, you did! And you did much better on it. You don't need a doctor's prescription to know if gluten bothers you or not. Dietary response is a great tool that is often overlooked. Remember the days of, "Doctor, it hurts when I do this (insert action" Doctor says "Well, don't do it then." Apply gluten to this example

2. Go back to eating gluten for an extended period of time, and schedule the bloodwork and biopsy (preferably close together!) Make sure you schedule the full blood panel....www.celiaccenter.org/faq/ has the list. Print this out and bring it with you-doctors often only do part of it. You need the full one. Doctors will tell you that you need the bloodwork and biopsy...but they are not 100% effective in diagnosing Celiac, they can miss it. Also, you can be non-celiac gluten intolerant, which wouldn't show up on the tests anyways.

Those are your two main choices. Depends on what you are looking for....an official diagnosis or will you be ok just "knowing" that gluten bothers you. It is a personal decision, but we'll be here to offer you education and information so you can make the best decision for YOU.

Let us know what else we can do. Feel free to PM me anytime!

Laura

[kbtoyssni]

I diagnosed myself through an elimination diet. When I added wheat back in, I knew right away it was a problem. Then a few days later I tried barely and got just as sick. If you're not sure if it's gluten or just wheat, you could try something like this. The only problem is that I don't always react to gluten so if you don't react it doesn't necessarily mean that it's just wheat.

Or you could get testing done through enterolab. They'll be able to tell you if you have the [known] genes for celiac and if you're gluten inrolerant.

[Chicklet]

Oh thank you for the warm welcome. I will keep reading and have learned a lot from reading already. I have contemplated going back on a SAD diet and getting the tests done but it just isn't worth the pain of heartburn and the IBS symptoms. So I'll just be happy to stay on the diet. I might try some barley or other grain to see if it is just wheat but I might not. I'm finding it okay to eat this way although at the moment I'm not gluten free but I'm close.

I don't really have any questions at the time, of course I had one earlier and now it's gone and hid somewhere in between my ears. If it comes out of hiding I'll ask then.

It's great to have the support of this board and all you knowledgable people.

[Sweetfudge]

Glad you're here marie! by the way, i love the pic very cute!

[Ursa Major]

Hi Marie, I am glad you finally came out of hiding!

You could try some rye bread. You know, the German kind you find in the Deli section of your grocery store. There are varieties that are only made from rye, no wheat. If you react to it, you can be sure gluten is the problem. If you don't, try barley next (leave a week in between, as you may have a delayed reaction). If you don't react to either, it may just be wheat.

Make sure you note ANY possible reaction, including joint or muscle pain, headaches, grumpiness/depression, anger outbursts, tiredness etc. Because you can react in ways other than gastrointestinal symptoms.

[Guest nini]

It's Marie from the Aristocats! Oh how cute!

Welcome to the board! If you are going to do gluten-free do it 100%... as was suggested, an elimination diet is probably the best way to find out if it MIGHT be just wheat, but then again, not everyone reacts to all gluten all the time (even confirmed celiacs) so using reactions to judge sensitivity just doesn't work. A lot of people have had good results with Enterolab...

[Chicklet]

Yeah, I like the pic, since my name is Marie it is kind of fitting. And she is so cute.

I'm aiming for 100% gluten free, I have to eliminate a few more things. Corn Flakes which is what I started eating when I first found out about this, then I discovered that they aren't gluten free due to the malt flavoring.

Then there is the fish sticks and chicken fingers I eat at lunch sometimes, need to get gluten free ones of those.

I drink tea, Tetly and just found out that they can't say it hasn't been cross contaminated, so I have to change my brand of tea. Those are the few things that I still eat that have gluten.

I have other symptoms then gastrointestinal symptoms, but how do you know when it is from Celiac and not pms or perimenopause? I have also had neurological symptoms since 2000 that they can't explain, been tested for MS cause that is the type of symptoms I'm having but don't have MS so after reading here about the neuro side effects I'm thinking that might be where it is from.

I also have hypothyroid and am on Synthroid for that. Found it interesting that thyroid issues can be connected with Celiac.

Thanks for the advice ladies.

[happygirl]

Marie,

yes, cute avatar

Happy that it is helping...when your question comes back, just let us know. Its overwhelming at times! (What am I saying, it is always overwhelming in the beginning!)

Laura

[jerseyangel]

Ursula is right on about the reactions being varied. If you go about this yourself, please keep a food/symptom journal--things will pop out at you much clearer.

Rye makes me feel dizzy and faint

Anyway, welcome to the board!

[mom2jpb]

Yeah, I like the pic, since my name is Marie it is kind of fitting. And she is so cute.

I'm aiming for 100% gluten free, I have to eliminate a few more things. Corn Flakes which is what I started eating when I first found out about this, then I discovered that they aren't gluten free due to the malt flavoring.

Then there is the fish sticks and chicken fingers I eat at lunch sometimes, need to get gluten free ones of those.

I drink tea, Tetly and just found out that they can't say it hasn't been cross contaminated, so I have to change my brand of tea. Those are the few things that I still eat that have gluten.

I have other symptoms then gastrointestinal symptoms, but how do you know when it is from Celiac and not pms or perimenopause? I have also had neurological symptoms since 2000 that they can't explain, been tested for MS cause that is the type of symptoms I'm having but don't have MS so after reading here about the neuro side effects I'm thinking that might be where it is from.

I also have hypothyroid and am on Synthroid for that. Found it interesting that thyroid issues can be connected with Celiac.

Thanks for the advice ladies.

Welcome, Marie!

You might want to try Good Earth Teas. They are made in Palo Alto, CA, and there are some wonderful flavors.

Regarding the MS, I was misdiagnosed with MS, then with lupus, then with RA. Symptoms did not abate until I went gluten-free. I went gluten-free and casein-free because my son is autistic and the Gluten-free Casein-free diet has shown great results with autistic kids. I had the blood tests and colon biopsy done after going gluten-free, and all the tests were positive for celiac.

I occasionally get muscle cramps and I use arnica to help.

I'm glad you are here, but I wish you didn't have to be! I have found that people on this board are very welcoming and have great advise to offer. I hope you find the same thing.

[Chicklet]

Oh my, I think I will just go with the gluten free diet, rye doesn't really appeal to me and I think just going gluten free sounds easier then trying to figure out other stuff. I don't think oats bother me though. I have some oat cookies that are wheat free and organic, but I'm being careful with them.

About the tea, I was doing some research on-line yesterday. I like orange pekoe teas, regular black teas, so the herbal ones don't appeal much to me. I did find out that (according to their web sites so please let me know if it is different ) that Stash Teas and Twinnings are gluten free. They have teas I like and I can get them at the grocery store.

mom2jpb ~ Interesting that you were misdiagnosed with MS and other neuro diseases, that is sad. My neurologist told me that "you are having neurological symptoms but we don't know why, go home and call me again if you are still being bothered by this". HUH!!

I'm forturnate that I figured this out cause my Doc was at the stage of prescriping Prevacid for me and I had side effects from that stuff. So glad that I found out the true cause before any more diagnoses.

Thanks again ladies.

[happygirl]

Regular oats, even if they do not list wheat, are not safe for celiacs because of processing and how it is grown. This includes Quaker Oats.

Organic only means but so much to a celiac...organic gluten is till organic gluten, no matter how you package it

There are a few brands that are supposed to be safe---including McCann's irish oats. So it depends on which brand you are eating. If you are eating non-safe oats, you are not gluten free.

There is always a twist, isn't there

[Chicklet]

Happygirl, thanks for that info. Yes there is always a twist, humm. So why don't oats bother me? Though I have found that I can have a bit of wheat here and there and not have a lot of pain but I sure do have a lot of cleaning up on my diet to be gluten free. It will take time but I will get there.

[happygirl]

Just so you know, just because you aren't having a reaction doesn't mean that you aren't being damaged if you have Celiac (i.e., there are asymptomatic Celiacs who never have symptoms, but damage is being done...so the same theory can apply to regularly symptomatic Celiacs)

Another twist

[aikiducky]

How do you know that oats aren't bothering you? Have all your neurological symptoms resolved already? If they haven't you can't really know that they're not from the oats and other sources of gluten that you still have in your diet.

The way to know, that you asked about, is to go absolutely 100% gluten free and see what happens. Before you do that, you might not even recognise your symptoms as "symptoms", because they're always there. Especially with neuro stuff, you only see the difference after you start to get better.

Pauliina

[Chicklet]

I've kind of been thinking the same thing, that I might not be recognizing some of the symptoms as being from gluten.

As for the neuro symptoms, they have been in remission for a while but they are starting to come back now. It's been about 6 months to a year since I had any real neuro problems.

I went to my dh's company dinner last night, I'm not sure I was carefuly enough. Have a bad headache now. But what is one to do, I do try.

I still have a lot to learn.