Is There A Doctor In The House?

[Guest michneva]

I NEED HELP!!!

I am a 24 year old female fairly newly married and fairly new to my home town. We originally moved here for my husband to take on a y. pastor position...a position which did not include health ins. and he has recently resigned ....we both now work for two different personally owned businesses...mine offers health ins. but it is only partially paid...for now we cannot afford it...the ins. that is.

I don't have the money to mess around with going to several doctors and all the testing...

We were married may 2003 and it was a few months before that when I looked into the symptoms of gluten intolerance and saw that while i did not have "classic" symptoms I had MANY symptoms.

I went to a doctor to ask about it and saw very quickly that I was going to be given the run around...and even at that time could not afford it.

I was encouraged to try being gluten free and see how I felt...and eventually I felt totally better...and I was so releived because I really thought I was CrAzY or was going to have to be on a thousand meds for the the issues that were surfacing...

Since then I have tried to go on undiagnosed ....trying to take my husbands comfort that we basically have the best and most personalized diagnosis...but I am really scared....

I keep screwing up on the diet...most of the time the screw up is not intentionally and once in a while I know I wasn't careful enough and then I pay for it....

I think I need further care such as vitamins and don't know what to do when I get sick and need anti-biotics...and what if there is gluten in those??? I fear not being taken seriously since I am not officially diagnosed.

Of course the idea of having kids only rips all the questions and fears wide open and I am honestly afraid...I feel alone in this and afraid...I feel lost and helpless....

In the past two days I have had some unfamiliar discomfort. My arms from my elbows to my rists ache badly, my neck aches, the small of my back aches, and my right ankle oddly enough; oh and sometimes my lower stomach area. The ache on my neck follows with a tension across my shoulders....I feel like I was in a fight or worked out waaaay too much...this morning all of it was very stiff and I am scared....when I tried to google search it all of this stuff about Fibromyalgia came up....and I know that is something that can be a symptom to signify the core issue being gluten intolerance ...OR it can be a product of not properly taking care of the intolerance ( as there are other disorders that can develope as well...)

Please, can someone find it in their heart to help me as much as they can????

I just want to be healthy and I am really afraid and wish I had someone to hold my hand and giude me through all of this......

[angel-jd1]

There are over 200 symptoms associated with celiac. Muscle and joint aches and pains are among those. Possibly you are still getting some gluten. You could post a list of your diet here lately (including brand names) and people could check it over for possible issues. That always seems to help people out a lot.

As far as the diagnosis part goes, you have to make that call for yourself. You would have to go back on gluten for 3-6 months eating the equivilent of a couple pieces of bread a day in order for the tests to show accurate results. Meaning, for you to damage your intestines again. You have to decide if being sick again is what you want to do.

When you have children they are not guaranteed to get your gene for celiac. There is always a posability that they would be able to eat gluten and be fine. If they were to show signs of celiac, then you should have them tested. I wouldn't worry too much about that until the time comes.

Hope that helps a little.

-Jessica

[KaitiUSA]

Yes maybe you are getting gluten into your diet and don't know it. Even things like shampoo, lotions, cosmetics etc can cause reactions. I had some lip balm that had vitamin e derived from wheat that was causing a reaction. There are so many things to look into to make sure you are not getting any gluten into you. As Jessica suggested maybe you should write the brands of things you have been eating and using and maybe we can help you out. There are so many symptoms of celiac that is one of the reasons it is so underdiagnosed. Also many people don't even have symptoms.

You would have to go back on gluten for quite some time if you want an official diagnosis otherwise it may turn up negative and have inaccurate results.

If your body is better off of gluten I would listen to it. Your body can tell you way more then anybody could tell you about it.

[Guest michneva]

I appreciate your response so much ladies!!!

The most outstanding thing I recall eating which I can tell you right off the bat is making me think twice is McDonalds....

I downloaded a gluten free menu but I know that there is no absolute gaurantee...I think that the only thing I consumed which I assumed was safe that was not on the list was thier Shammrock Shake...perhaps there is a flavoring or something? I assumed it was okay since the other shakes are supposedly okay....???.....

Unfortunately I have had the shake 3 times in the past week and a half...on was large, and another was small and then the third time I had a couple sips of my husbands....

This might sound really funny, and I am not trying to be fresh, but my husband only eats gluten free when there is a homecooked meal prepared that we are sharing...otherwise if it is take out or something he always has a gluten option and ...well, if he kisses me after eating is he able to contaminate me???...lol....but seriously what do you think???

Oh, and I looked up info on something called entrolab where they do fecal tests and such and they say that the good thing about it is that you don't have to go back on gluten as it is THAT sensitive and far more accurate...they also consider that most people who have only been on the diet for a couple of years still have traces of gluten and there is also the honest point that most people get unnoticably contaminated and that is picked up as well...however....the test would not be considered well by a local doctor supposedly....I just don't get it....millions of people are sick and I just don't get at all why it is not taken seriously?!?!?!?!?

Anyway, what do you guys have to say about anit-biotics and vitamins????

Thank you again!!!

I feel a lot better knowing this ache situation maybe gluten related and I am not like wasting away or something...lol...no but serioulsy I was pretty uspset ....( couldn't find a crying emoticon ...but was crying just the same)....

The most familiar reaction I have had to being contaminated was to get moody, depressed, headache, fatigue, "mad-poops," and gas/bloating... and if near my period terrible cramping....Otherwise I think maybe two or three times have I ever had flu like symptoms where I felt like I was going to die...chills, my face is hot, clammy hands, achy body, can't get comfortable...can feel every hair...which always sucked especially if I needed to shave....lol.....but this ache thing I described earlier was totally new and scary....thanks for understanding...

I know I keep typing a lot, but I appreciate your time in sorting through it to answer my questions and show support...the best I can give you is to try to be more healthy and also share helps with others....so I look foward to hearing from you soon!!!

-erica

[Carriefaith]

In the past two days I have had some unfamiliar discomfort. My arms from my elbows to my rists ache badly, my neck aches, the small of my back aches, and my right ankle oddly enough; oh and sometimes my lower stomach area. The ache on my neck follows with a tension across my shoulders....I feel like I was in a fight or worked out waaaay too much...this morning all of it was very stiff and I am scared

My mom has almost all of these symptoms, it was like I was reading soemthing she wrote about herself. She has been to the doctor and had just been tested for lupus, rheumatoid arthritis, celiac disease, and lyme disease. These are all the things HER doctor thought it could be.

My advice: If you absolutely cannot afford to get testing done, and if the gluten-free diet makes you feel better, just stick witht he diet until you can see a doctor.

Jamieson Vitamins are gluten free it says right on the label.

Open Original Shared Link

Open Original Shared Link

Good luck

[angel-jd1]

The first thing that screams out at me is the mcd's shake. CONTAMINATION!!! They use the same equipment to make malts and shakes. Unless you asked them to clean the machine, it was probably contaminated.

Also, maybe you are having some issues with dairy!?! Many people do and get the same type of symptoms as when they get "glutened". You might start keeping track of how you feel after eating dairy products.

You CAN get contaminated from kissing. Ask the hubby to use mouthwash or brush his teeth after eating gluten. That should take care of things and you can be kissy.

As far as vitamins go, I take nature made. They say right on the labels if they are gluten free or not. You can get them at the regular store for regular prices.

Antibiotics and other meds, you will have to call the company on all meds. Ask the pharmacist for the name of the drug company and then do a search online for their number if the pharmacy doesn't have it. Give them a call and see what they say about their gluten-free status.

If you haven't called yet you need to check out your birth control, any allergy meds, and anything else that you might be on.

Have you checked things like your toothpaste, lotions, shampoos, hand soaps? Those are easy ways to contaminate yourself also.

It DOES get easier as time goes on. Hang in there. Pretty soon you will be an old hat at this.

-Jessica

[KaitiUSA]

Yes you can get contaminated from kissing so he should make sure he brushes really good before kissing you if he has something containing gluten.

McDonalds can't guarantee there stuff to be gluten free. No restaurants really can. So you have to be careful.

I take enzymes, probiotics, liquid vitamins, b complex, and a sublingual b12 vitamin. I also take more supplements but that is my core things I make sure I have.

You need to make sure all meds are gluten free. Also make sure the vitamins are gluten free as well.

It does get easier when you know the brands of things you can have and use and we are here to help you whenever you need it Good luck

[Canadian Karen]

I also use Jamieson vitamins....

Also, if you are wondering about over the counter medications, go to

www.glutenfreedrugs.com

they have a very good list of things that are gluten-free that you can take.

You have to be very careful with over the counter meds. I made the mistake of thinking Gas-X chewables were gluten-free and I was eating them like candy for the bloating.... turns out they had gluten in them!!!!! Another contamination I was getting was in the Clamato Juice I used to make my "weekend Caesar" (it's a Canadian drink.....). Turns out Clamato has gluten in it also....

There are soooo many possible sources, it takes a while to weed them all out....

Hope you feel better soon

Have a great day!

Karen

[celiac3270]

Well, about McDonalds, they can't guarantee anything, because the employees might cross-contaminate something--I'd ask if their fries, for example, are cooked in a dedicated fryer before ordering them. Their gluten-free list (for the USA) is here:

Open Original Shared Link

[stef-the-kicking-cuty]

Hello Erica,

yes, you can get contaminated, when your hubby kisses you and ate something with gluten before. Like the others said, just make sure, he brushes his teeth or uses a mouthwash.

I also take Nature Made vitamins, a probiotic (Primadophilus) and wobenzym N. The next couple of days I try the sublingual vitamin B. I think Kaiti mentioned it before. You can get all that stuff in a Health Food store or a pharmacy.

Here's a list of different brands that have glutenfree food:

Open Original Shared Link

I printed it out, put it in a folder and go shopping with it. Although it's 51 pages at the moment, it makes celiac-life a lot easier.

The Kraft company states gluten on the label. They write for example: "Modified Food starch (from wheat)..."

I had terrible cramps and pain with my period, too. As soon as I started with the gluten-free diet, that was history. However the first two weeks of my gluten-free diet, my intestines were all better, but I had terrible bone pain everywhere in the body, which I never ever had again after that. With me, I think, it was a kind of a "gluten-detoxification" or something.

OK, hope, I could help a little here. If you have questions, just post it on here. That's the wonderfull thing. The people in here always try to help you.

Hugs, Stef

[Guest michneva]

Okay it is now wednesday and I have been feeling a little better each day. As I am here typing I have no pain in my arms, stomach, back, or neck...although my ankles still are a little tender ( particularly right ankle,) and also lifting anything too heavy is still not happening...this is definitely progress. I also didn't even realize that I had appearantly been increasingly groggy as I noticed that I feel lighter and healthier as my aches go away as well. Thank you so much I was really scared and quite overwhelmed!!

I copied a crap-load of information and made files of it for easy access.

Thanks to JESSICA and all her files!!!

THANK YOU ALSO to KAREN who suggested the gluten-free drug sight where I was able to choose a vitamin that will do for now and I feel MUCH more secure approaching a doctor in the case of emergency and the need of drugs ....

THANK YOU STEF I did copy the food list which will also come in handy for food shopping and such!

THANK YOU TO THE REST OF YOU WHOSE SUPPORT REALLY MADE ME HEALTHIER, MORE PEACEFUL, and really just able to live life!!!!

talk to you soon.....heh-heh....especially if I freak out again!!!!!

lol

-erica

[Guest michneva]

OH WAIT!!!!

No. I am not freakn' out I just have questions on some of the responses.....

FIRST thanks also to KAITI as you seem very gentle and kind and offered great advice as well!

ALSO celiac3270 as I did check out the McDs sight!

AND CARRIE thanks !!

So as I was saying....

I do not understand all the mentionings of the various vitamins and such...how do you know what to take ???

OH and I am pretty concerned about the mention of needing to be watchful of my HBA products (???!!!) How would this effect me if my symptoms have never been on the surface...as in my hair or skin...??? And if I should take precaution what products do you reccomend? None of the food lists mention HBA products.....

Currently I use the following HBA:

Secret deoderant

John Frieda's Brilliant Brown shampoo and conditioner,finishing creme, and gel

Dove soap (sensitive)

( WAS USING A SAMPLE OF BATH AND BODY WORKS RELAX AEROMATHERAPY BODY WASH AND SAW AFTER I READ THESE POSTS THAT IT HAS BRAN IN IT SO THREW IT OUT)

Summer's Eve sensitive skin intimate wash

Barbasole's women's shaving cream with aloe

Suave lotion with aloe

Tom's natural toothpaste

Tom's natural mouthwash

Bath and Body works perfume scent Tutti Dolce Chocolate Fondue, and wash hands with thier anti-bacterial soap that is scented Sun-Ripened Rasberry

I work at a preschool where they use softsoap brand soap scented cucumber melon

My make-up is Origins moistorizer for day and Night-a-mins moisterizer for night, foundation, sheer powder, and eye shadow, and lip gloss.

I use NYC brand eye pencil

Maybeline brow pencil

Maybeline mascara

Blistex natural chapstick

OH, and someone suggested that I take note of how i feel after consuming dairy to see if I may have an issue there and I am keeping that in mind thank you.

Let me know what you think, thanks for your time!

-erica

[darlindeb25]

i cant remark on everything you listed--softsoap is gluten-free--i use it all the time--for my hair i use pantene, but i have a lot of hair and many shampoos just dont cut it with this hair--i read all lotions before i use them--i also cant have soy--some of bath and body works is ok, some isnt--i use sweet pea and white tea and ginger---the reason you must be careful with lotions, shampoo's, soaps, etc is because they can get into your mouth when showering--lotions are on your hands and can get on your food---so much to think about sometimes huh---you will be a pro at this soon too deb

[KaitiUSA]

John Frieda can't guarantee any of their products to be gluten free. I emailed them about 2 products 2 weeks ago.

Tom of Maines...most of their stuff is gluten free but there are some products that are not gluten free. I have a list if you would like that. I use Dove shampoos and soaps and hairsprays...they will not hide anything in their line. I use Crest toothpaste and Listerine freshburst mouthwash. I use softsoap for liquid soaps. I use purell as well. Bare escentuals makeup line is gluten free so I use that.

The problem with using these products is say you use shampoo with wheat in it, touch your hair its on your hands. Now if you eat something you could be getting traces in your system. Also with lotions it is especially dangerous because your hands touch your food all the time.

Well enzymes and probiotics I was told by my doctor to take and basically that is very good for celiacs and everyone else for that matter. Some of my family who are non celiacs also take alot of the stuff that I do

Liquid vitamins are absorbed by your body better and I highly recommend them as well.

Anything sublingual is supposed to be good because it gets into your bloodstream quicker..I use sublingual B12 vitamins too.

These things are very important to boost your immune system. I take many more supplements but I find it well worth it. You need to make sure that they are gluten free though because some are not. There are alot of good gluten free brands though. Good luck and don't hesitate to ask any questions

[watkinson]

The thing with deoderants, makeup, lotion, ect. is that trace amounts do soak into the skin and get into the bloodstream. Think of certain medications that are applied topically but get into your system, it's the same thing.

Vitamins are very important, especially ones with calcium and iron. Because the villi in the intestines are damaged when we are still ingesting gluten, so the villi can't absorb nutrients. When we stop eating gluten the villi grow back so it's important to get back all those nutrients that we lost. That should help with the muscle aches. You are problably potassium and magnesium deficient . Try Kirkland brand multi from price club.

About being tested, if you feel so much better being gluten-free you should stay that way but if you keep having symptoms you really should see a doctor beacause it could be something else. You should also see an allergist to see if your allergic to anything other than grain, like the dairy issue that was mentioned to you. I recently disscovered that I am extrememly sensitive to corn and corn products, like corn syrup. I get horrible aches like my bones are broken at the joints, with shooting pains going down my arms into my hands and then my hands tingle like they have fallen asleep. Terrible Fybromyalgia. When I gave up gluten things got much better but it was'nt until I gave up all corn that the pain has almost completely gone away. I also get the terrible aches if I eat anything with maltodextrin in it.

Remember it took your body a long time to deteriorate, so it's going to take a while to get back to normal. Don't stop researching. I don't think of it as a chore, it's like a game to me, a blast when I make a new discovery on something I can eat. I think it's exciting educating myself so I can do whatever it takes to keep feeling great.

One last suggestion... exercise! I promise it will make your muscles feel better, go out for a walk or run with your husband, but don't let him kiss you unless he's gluten-free or brushed his teeth.

Good luck, Wendy

[kabowman]

I have been tested for just about everything and it all came back negative (of course that was after I was gluten-free too). Anyway, my doc finally suggested a food diary that also includes all symptoms.

I created an area to show when/if I was running a fever, joint pain, stomach problems, you name it and that helped the most. The bad part is, I did it for 4 full weeks and when I was summarizing the info for the doc, that is when I realized that a lot of my pain has diminshed. Pain I have had for 13+ years.

I discovered that after I eliminated gluten, lactose/casein, soy, garbonzo, corn, yeast, etc...the list goes on that almost all my joint pain is gone, almost all my tiredness is gone, most of my stomach issues are gone, fever gone, etc.

I watch my vitamins and meds closely. I eat out carefuly. I clean the kitchen non-stop, etc.

I have checked with my PCP, allegist, Gasto guy, and they all say that minus the testing, this way works best and great that I found all these intolerances out. I enjoy simple things and learning to fix alternative foods. I started last July...good luck.

-Kate

[Guest michneva]

Just went through some of my stuff...HBA products and found a lotion that is the same type as the perfume i mentioned and it is NOT gluten-free

AS well as the JOHN FRIEDA BRILLIANT BROWNS FINISHING CREME.....both have some wheat crap in it....pretty frustrating to say the least .....

I was reading up on some of the comments on cosmetics...and I am trying to comprise a list for myself...and it is very difficult !

I am trying to consider cost and availability and then I keep reading where people are saying on one hand the product is gluten-free and then someone else says it is not.....very frustrating....

KAITI mentioned Bare Escentuals make-up which I would LOVE to try but it may not be cost -effective enough for now...and then also there is how i honestly don't want to wait and go make-up less for a week....and I am frustrated that some of the make-up products I have a just bought a couple of weeks ago....and it was at a dept. store so it was a planned out purchase...blah blah blah...well, I'll live....speaking of which that is the whole point of all of this so I'll shut up now !!!!

TTYL

-erica

[KaitiUSA]

There are some covergirl,maybelline, and neutrogena products that are gluten free as well. I know bare escentuals is on the high side price wise. Hope you find what you are looking for

[Guest michneva]

Okay so here are some switches I made so please people tell me what you think...I know that some of the stuff I got rid of could have been "potentially safe," but something is definitely irritating the crap out of me and so I replaced what I found to be "suspicious."

John Frieda hair products TO Garnier Fructise shampoo and conditioner

Suave body lotion with aloe TO Lubridern sensitive skin body lotion

L'Oreal balancing face wash and toner TO Nutrogena Bar soap

Origin's moisterizer in Have A nice day and thier Night-a -mins TO Nutrogena sensitive skin moisterizer

Origin's balancing foundation in Angel TO Cover Girl's Aqua-smooth in Creamy

Natural (but this has vitamin e and I do not know if that means it is pure vitamin e or

if it has wheat as I heard sometimes vitamin e noted in skin care can .....????)

Origin's sheer powder out ( new foundation is liquid to powder anyway)

Origin's lip gloss TO Cover Girl CG smoothers lipstick

Origin's eye shadow duo TO Cover Girl eye enhancers quartet

L'Oreal volluminous mascara TO Cover Girl remarkable in black/brown

and Cover Girl Fresh Look Concealer

--I saved the Origin's stuff for now maybe I will still contact them and see what comes of it...but the other stuff I was about to buy new stuff anyway since I was nearly out....and in the mean while I will see how my head and face feel....

Oh, and I still am going to plan ahead for ordering Bare Essentials in the future perhaps....

Let me know what you think please :-)

BY the way for those who suggested that I keep not of my dairy intake I noticed that when I overdo it with dairy ....meaning like within a week I have yogurts, milk, ice cream, and cheese often then by the end of the week I feel kind of "off" like I have sinus issues and some kind of chunky cough ( yum...heh-heh...sorry people...)

So, I have eased off of the dairy...and gone back to my usual of soy milk and other than that having gluten-free ice Cream product once in awhile only.

Gotta go to work now....oh, by the way I am a preshool teacher (AGH!!!!) Yeah, and I am wondering if I should probably wear gloves when we do art projects and when I prepare their snacks and lunches....probably healthier for them anyway when it comes to touching their food....but I was thinking of cross-contamination as well...I can almost already hear the unanimous YES so I will do that today anyway to be safe.

TTYL!

-erica

[KaitiUSA]

Michneva-All of cover girl is not gluten free you have to contact them. I received an email from them that said if it is directly added they will put it on the label but they said they purchase their scents for fragranced products from many suppliers and that there could be traces. I have 1 covergirl lipstick that I got an ok on but I would definately check to make sure your products are ok.Continous color by covergirl I know is gluten free that's what I have but anything else you have I would check. Vitamin E...I would def. check with the manufacturer. I was using some lip balm a while ago and I was having a reaction and I couldn't figure out what it was from. It turns out the vitamin E in it was derived from wheat so I would be very careful with that.

All of Burts Bees lip shimmers,lipsticks, and lipliners are gluten-free.

Dove will not hide anything you may want to try them.

I have a neutogena list and did not see some of the products on there. I would contact them for a list. There are moisturizers and soaps on the list and I didn't look over it thoroughly so it could very well be on there. I know some sensitive skin products on on the list but I did not see that moisturizer.

So even if that product is not gluten free there are alot of neutrogena products that are Good luck and hang in there it gets easier

[lshaffer1]

michneva,

I, like you, am guessing at this intolerance. For the last 10 years I have had constant diarreah, fatique, depression and a general feeling of malnutrition. It was only when I read an article in Today's Woman magazine about wheat intolerance that I changed my diet. I AM AMAZED! I have lost 10 pounds in 2 weeks and my dirreah is not as bad as it ussually is.

I have read the message board and see that many folks have worse symptoms than I do...but I am convinced that this is a problem for me. I do not have insurance...so will continue on with this diet. I have added flaxseed meal (gluten free) and a lot of fruit and nuts.

Fortunately, I do not eat many prepackaged meals...because they upset my stomach so bad. I had no idea why! I just avoided them. The added fiber in the fruit seems to be something my previous diet was missing. I thought pasta had fiber! I thought I had too much fiber! So I would eat more pasta! More diarrhea. Then I tried the all wheat pasta...boy that did NOT help the problem.

I have been so confused...this makes sense to me. I appreciate reading the messages that you more experienced folks post...thank you!

Linda

[KaitiUSA]

michneva-If you go to the product section I posted a list of neutrogena products that are gluten free...if you like that brand you might be able to find something on the list you like.

[Guest michneva]

Thanks KAITI I'll check!

[Guest michneva]

I have the Neutrogena list and my moisterizer and facial bar are on it (phew!)

I emailed Origins and Cover Girl...so hopefully I will hear back soon...

AND YOU CAN BE SURE THAT PUPPY WILL BE BLASTED ALL OVER THIS SIGHT!!!

By the way all that scary aching that I started this thread with is G-O-N-E ....that's right people! Gooooooooooooone!

hehehehehhehehehhhahhahahahhahhahhhahahHAHAHAHAHAHAHHAHAHAHHA.....sorry, just giddy to be alive agian...ankle is still giving me a little trouble...but it may be from a previous injury...

I am on vitamins finally and so psyched that I have not had to go to ONE specialty store yet in the past two weeks...seeing as I am ARMED AND DANGEROUS with my mainstream list...( yes, I walked into the grocery store like I was all BAAAAD...)

Seriously though....as you know a long way to go...new battle of HBA products and sloppily buying stuff when not fully informed and wasting money....grrr.....

Working out the kinks i guess...

Wore gloves at my preschool job during meal times and some co-workers sneered ( playfully of course,) and did I feel like the freak extremeist ...slightly, but I think that knowing that I am serving all kinds of gluten crap for two snacks and their lunches and I am lucky if in between I can sit to eat let alone to clear the whole area, wash hands, and then never have to touch thier stuff again...so gloves it is...and it is more sanitary anyway...

Still wish I knew of a local doctor or nurtitionist who understood and could help me.....

Well, such is the gluten free life (sigh).....until further adventures....this is me signing off......have a nice day people

-erica

[Guest michneva]

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