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WhimsiKay

Anxious & Morbidly Hopeful

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Hello, everyone. I suppose now is as good a time to intro myself as any!

I'm pre-diagnosis at the moment (I get my results back mid-week, I think) but I've started a gluten-free diet in the hope that celiac disease or plain gluten-sensitivity is really what's wrong with me. I've gone through most of my life being incredibly skinny, but so has my brother and father, so we always assumed it was normal. I hated to eat as a child, and we thought it was because I was lactose intolerant: I was diagnosed as a baby with the inability to deal with milk, so I had to stop breastfeeding and was put on soy milk for the duration. It was supposed to be a temporary thing, so I was eating normally growing up, but I hated things like cereal and pizza because it would make me feel bad.

Well, long story short, I've spent most of my life just always having some sort of mild stomach issue, nothing worth mentioning even. Until two months ago, anyway. Well, technically, probably a few years ago, when I started losing a lot of weight. I was taken to a specialist who swore upside and down that I had "parasites" of some kind, and I admit that I did feel better after taking the pills for it. I also cut out dairy because I realized I was feeling bad with all kinds of dairy products. Things were going swimmingly until two months ago.

I caught that stomach virus that was going around, and it wiped me out for four days. I emptied my guts that first night, it was the most horrendous flu I've ever had, but ever since then, I've had these terrible digestive symptoms. Terrible gas and bloating, so much that it hurt to stand up straight, as well as horrible diarrhea, oily and yellow (I now realize it's a sign of mal-absorption). Some days have no symptoms but this at all, and then out of nowhere -- POW! -- painful cramps, nausea, chills like food-poisoning.

This flu hit on a day when we ate crab legs that were caught by a friend, so when the doctor learned I was uninsured (of course, this all kicks in just before my insurance starts!), she tried to go with the most likely (and less expensive) tests first: parasites and bacteria. I was in tears when the stool tests came back negative of anything; I was praying for a "quick fix". She took blood work that day,a nd now I'm waiting between Tues and Thurs of this week to hear back. She's testing for vitamin levels in the blood as well as gluten antibodies, but she suspects it could be Celiac or, at the very least, a gluten-sensitivity. She also warned that Crohn's disease and IBD or IBS are also in the running, but she said it won't hurt to get off the gluten and see how that works.

I've been off gluten -- or at least, as off as I can be, since I'm still learning about those sneaky ingredients -- since Friday afternoon, and I feel like there's already a difference. My stomach doesn't seem to be passively upset at the moment, when I got used to it being upset all the time. I'm still suffering diarrhea of the same consistency, but I'm also told that this is because the intestines need to heal before I notice any greater difference.

In the meantime, I've got a mild case of bloat, and I'm actually kind of heartened by this, because I'm told this happens when you get off gluten for the first week to month. I'll be getting some probiotics to help (any suggestions?), but I'm actually hoping that what I have is a gluten issue and not, say, Crohn's disease or something terrible like that.

I have to admit, though, that I'm scared to death. Being gluten-free seems so very hard, given that it's in everything I usually ate, and the gluten-free sections in my local stores aren't what I'd hope they were. I already miss the ability to make sandwiches -- gluten-free rice bread is like cardboard to me :( -- and I'm terrified of getting betterm, only to mess up and have to start it all over again. I have my husband's support, which is wonderful, but it seems like such an intimidating change to make. I feel like the list of products that I can't eat are so VERY long, how on earth is it possible? I worry about choosing not to eat at all, but that's ridiculous.

I realize I'm hardly the first to feel this way, but it's such a change from what I'm used to. Positive encouragement will be my best friend, I know, but it just seems so very intimidating.

Anyway, all that said, I'm hopeful that this is, actually, the reason for my being so unhealthy for so long, and I hope the fatigue I've been having goes away soon too. Now that I can take my vitamins again -- I take the GNC Women's Ultra Mega, which I couldn't take after my flu because it seemed to make my pain/bloating worse -- I'm trying to keep a positive outlook and hope my body flushes out all this bad stuff and heals soon.

In the meantime, I'm scouring these forums for every tip and trick and hint I can get! =)

Oh, also, this has been a very recent development: every so often, my arms or the top of my head will prickle, almost tingle, and I'm wondering if that's something to do with my sudden worsening in the past two months? I thought it may have to do with the fact that I dye my hair, so my scalp was just getting over the chemical shock, but it was happening even before I went back to chemical dye after henna, so that didn't make sense to me. Also, why would it affect my arms?

Thanks so much for having an open forum like this!

Best,

Kay


Goal Checklist:

100% Gluten Free Home [x]

Endoscopy [ ]

Entero Labs Gene Test [ ]

Weight Gain (current: 105lbs.) [ ]

Husband's Support [x]

Learn to Cook [x]

First House [ ]

Pregnancy [ ]

Unhealthy for 25 years. Always too skinny, always "diagnosed" by a hypochondriac mother. Pre-diagnosed by a walk-in clinic doctor April 2008 despite a negative blood-test. "Gluten-free" since then -- barring, of course, all the learning curve accidents I'm still suffering! Official diagnosis still pending.

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Celiac.com Sponsor (A8):

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Wow. Let me just start off by hoping you feel better soon!

As far as what to eat, shop around the perimeter of your grocery store where the simple meats and produce items are found. There is a lot of stuff there!

You will eventually be able to eat some processed foods but it's best to stick to basics at first. The diet can be a challenge but it beats the heck out of feeling sick all the time! You'll see!


Sandi ~ learning to live in a world obsessed and infested with wheat.

"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .

"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)

The person we most dislike is still a soul for whom Christ died. (David Jeremiah)

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Hi Kay! I too am awaiting test results, though I just had the blood drawn today. I think it'll be a couple of weeks. Part of me wants a positive result just because then I will know what is going on (and I can tell the dr "nah nah I told you so"), but the other part of me would like it not to be celiac/gluten issues so I could continue to eat pasta and pizza (I am living in Italy right now after all~at least gelato is gluten free lol). I am not going gluten free yet as I don't see the doc till the 17th and I think he will send me off base to a local specialist (and my hope is that all the info I read that says European docs are more up to date on celiac will be true) and so if they want to do a biopsy I don't want to mess that up. I guess I'm not feeling THAT badly right this moment!

I do have the advantage of having a son with food allergies so I've got a lot of the learning curve behind me, I'll just have to discipline myself which is probably harder than getting my son to eat right! My advice is first figure out what you CAN eat so that you aren't so focused on what you can't eat. When my ds was a baby, I had to go on an elimination diet (dairy and soy) and I wasn't well prepared at first with "safe" foods so I would either cave and eat something I shouldn't have (and ds would pay after nursing) or starve myself. Make sure your vitamins are gluten free. I have no idea if most vitamins are safe or not! Others on here say even your health and beauty products need to be gluten free as well.

Hang in there and good luck!

Nancy

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Part of me wants a positive result just because then I will know what is going on (and I can tell the dr "nah nah I told you so

Nancy

Please be aware that up to 30% of celiacs or gluten intolerant folks will show a false negative on blood testing. Be sure to give the diet a good strict try after you have completed all the testing you desire to do. The truest test of whether or not the diet is needed is the diet itself.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Thanks so much for the positive thoughts! And oh, Nancy, I'm so sorry to hear about your current issues! I can only imagine being in a place with as wonderful food as Italy and having to go without. I hope your problems are at least named soon.

I'm trying very hard to stay on a gluten-free diet. It's especially hard because there's no immediate difference. I guess until my intestines heal and the villa come back (assuming that is the issue), there's won't be any noticeable change, so I just have to keep hoping that I'm doing the right thing.

I have to say that nighttime is the worst for me. I seem able to eat just about anything by day (though I've been doing gluten-free for a few days now), but come night, the instant I eat, I'm nauseous, crampy, generally uncomfortable. It makes the evening hours very long.

Good luck with your tests, Nancy, and I'll wait for mine. I hope they find something!

- Kay


Goal Checklist:

100% Gluten Free Home [x]

Endoscopy [ ]

Entero Labs Gene Test [ ]

Weight Gain (current: 105lbs.) [ ]

Husband's Support [x]

Learn to Cook [x]

First House [ ]

Pregnancy [ ]

Unhealthy for 25 years. Always too skinny, always "diagnosed" by a hypochondriac mother. Pre-diagnosed by a walk-in clinic doctor April 2008 despite a negative blood-test. "Gluten-free" since then -- barring, of course, all the learning curve accidents I'm still suffering! Official diagnosis still pending.

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It seems that after writing this post, my stomach decided it hated the dinner of potatoes, steak and corn I gave it. I'm so dejected, I'm in tears because I just want to get healthy. I have to cut our soy, I suppose, to help things heal, but I don't even know where to start.

I have to stay strong and learn how to deal, but it's hard, isn't it?


Goal Checklist:

100% Gluten Free Home [x]

Endoscopy [ ]

Entero Labs Gene Test [ ]

Weight Gain (current: 105lbs.) [ ]

Husband's Support [x]

Learn to Cook [x]

First House [ ]

Pregnancy [ ]

Unhealthy for 25 years. Always too skinny, always "diagnosed" by a hypochondriac mother. Pre-diagnosed by a walk-in clinic doctor April 2008 despite a negative blood-test. "Gluten-free" since then -- barring, of course, all the learning curve accidents I'm still suffering! Official diagnosis still pending.

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Please be aware that up to 30% of celiacs or gluten intolerant folks will show a false negative on blood testing. Be sure to give the diet a good strict try after you have completed all the testing you desire to do. The truest test of whether or not the diet is needed is the diet itself.

I know, I just want to wait till all testing is done before I go gluten free (which I plan on doing regardless of test results).

Nancy

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