mythreesuns

Celiac, fibromyalgia, ulcerative colitis, Chrone's, Lupus, Lyme, RA.......

I fit the profiles for every one of these diseases, how do I choose which to focus on first!?

Luckily, the rheumatologist I was referred to can help with the fibro, the Lupus, Lyme, and RA, and the gastro is following up on the Chrone's and colitis. But sheesh...at this point I've passed ALL the tests so I'm still a medical mystery!

Oh, how I would love to know! I love eating there, and so do my kids, but I'm afraid to eat anywhere at this point.

Plus, I can't have milk, so what's the point anyway? LOL

This is not OCD this is common sense!

Yeah, but it sucks when making a simple salad takes almost an hour.

Oh, I'm TOTALLY OCD right now! And I had an already diagnosed anxiety disorder, so I didn't have far to fall. LOL

What I'm OCD about is my own home. I wish I could be as strict as some of you, but I have DH, 3 small children and two pets, so it would not be fair (or cost effective) to only allow gluten-free foods in the house.

I do have a shelf for just my stuff, and a door shelf in the fridge, but every time the kids make toast in their toaster, you'd be surprised how far the crumbs fly.

Before I make anything for myself I scrub my "safe area" of the counter, I scrub the pot and utensil, the knives, put my gluten-free cutting board on the freshly scrubbed counter, etc. And then I still worry that there was something on the plate, that I touched something with gluten on it....

Well, the symptoms are certainly the same. My dr is convinced I don't have celiac ("passed" the tests) and since I was still having symptoms gluten-free he's testing me for Chrone's and ulcerative colitis.

I figure its worth ruling those things out, but more and more I'm thinking gluten is my issue. I keep waiting for a good time to "test" myself with a slice of pizza or something, but I'm afraid to! LOL

Plus, I'm not sure I've actually made it a whole week truly gluten-free (eating out, etc.) so I'm waiting for a good week or so before I "test" myself...maybe. Then again, maybe I'll just skip the test and stay gluten-free! LOL

Anyhow, with slightly positive blood tests and a glaring negative biopsy.... I will continue to be gluten-free.

With the slightly positive blood test, why bother with a biopsy anyway? I mean it's good to rule out other conditions, but I wouldn't count on a biopsy for confirmation. There's no other reason your blood test would be positive without you having a reaction to gluten, right?

All the negative biopsy means is that they didn't see any damage in the FEW places they looked, most likely at the upper couple of inches of the small intestine.

I think you're doing the right thing, keep on with the diet whatever the dr tells you.

Staying on the diet? So you're gluten-free right now? This could be the reason for the negative/inconclusive results. You have to be eating gluten for blood tests and biopsys to be positive.

I didn't go gluten-free until several weeks after my blood test, stool test, and biopsy.

So many of you have asked how I'm doing and have encouraged me along on getting healthy again, I thought I ought to post this quote of something I wrote on another thread that updates you all about my doctor visit. I think this doc is a keeper! An MD, but one who has branched out into alternative treatments because she understands that there are so many of us who are subclinical in our ailments but are too sick to function normally.

Thank you all for your support.

Interesting.....I would love to have more information about adrenal functioning. Any suggestions of where to look?

Did they check your levels of B12, folate and ferritin?

I don't think they checked any of that stuff.

I'm picking up copies of all my labs, etc., next week when I get my referral so I'll be sure to look through them thoroughly.

The dr just called to tell me that all my bloodwork (sugar, RA, ANA, lyme titer, thyroid, sed rate, etc) was all normal.

I guess I should be glad, but I just want to cry! Why am I in so much pain if everything is "normal"?????

Because I AM still in pain (from what I thought was arthritis) I'm being referred to a rheumatologist. What could he do that my primary and gastro couldn't? I ask that sarcastically, not hoping for any real answers anymore from the medical community.

Everyone, please remember to get a hard copy of any test. Do not just take the answer that is given to you.

I just started to do that a couple of months ago. Glad I did, because no one told me my sugar was high with the previous test!!!

Back to the original post...I'm feeling like this is going to be a D day. Isn't that sad, when you know as soon as you get up you're going to be running to the bathroom all day?

I am wondering if your arthritis is rhuematoid? It seems that the night shade foods make that worse, they are potato, tomato,peppers and eggplant. Am sure you do not want more food restrictions but might be worth a try. My pain started in ankle too, late winter before DX and spread to wrists, bit better now there.

Last test I had no arthritis but recently read thyroid lack can cause tendon pain, especially in wrist..my thyroid needs to be upped rahter often. Just an idea for you, wishing you relief yesterday!!

Have best day you can. evie

Thanks, dr tested my thyroid and RA during the last round of tests. Won't know the answers until Wed or Thurs.

As for the nightshades, I really don't eat a lot of those things, especially now. Well, tomatoes in my salad, that's about it. Haven't had a potato since I cut out butter (early June), don't eat peppers or eggplant, and only eat tomatoes in my salad, maybe 4 or 5 salads a week.

Does anyone else get the retaining water thing or the cravings?

I don't know about reaction to glutening (still new, trying to figure out if I've been glutened or not) but I do know that before I went gluten-free I had an insatiable hunger. Even if I just ate, sometimes I would be so hungry my stomach hurt and I would eat EVERYTHING in sight.

That's probably why I'm overweight.

Thanks so much, everybody!!

I did get my own cookie sheets and utensils, but I haven't used them yet because I can't figure out how to store them properly.

I use stainless-steel pots, and I don't put them or the cooking utensils in the dishwasher anymore, I hand wash them. Is that sufficient? Although, I don't have a strictly gluten-free washrag, so that will change as soon as I get home. LOL

I stay far away from the towels, as it is just too hard to figure out what's really on them. I wash my hands frequently in the kitchen these days, and I use only paper towels.

I do have a "safe zone" on my counter, but it's hard to keep gluten-free, so I scrub it, wipe it, and wipe it with a paper towel before I use it (which means putting my gluten-free cutting board on it).

I did get my own toaster. I have my own shelf in the pantry, too. I have my own butter and peanut butter, but I suspect I'll need my own jelly as well. Everything else is a squirt bottle, so assuming no one touches their food with the bottle I'm safe, right?

Thanks again for all the tips! With the kids using the kitchen, I can't rely on anyone else to keep my stuff clean.

Thanks so much Jenn, Laura, everyone else.

I was told there was "no chance" of gluten intolerance or celiac because the blood tests and the biopsy were both negative. The gastro dr is the one who told me that. The continuance (though lessening) of the D and the arthritis is leading him toward testing me for Crohn's (finally, got the spelling right! LOL) and/or ulcerative colitis.

The primary doc is going along with the no celiac bit, but not discouraging me from continuing on a gluten-free diet. He is also vigorously pursuing the cause of my arthritis, which is a good thing I suppose. My fear is that the tests they ran last week will be negative...like every other test I've taken for anything.

What I don't understand is why the arthritis is SOOO bad, now that I'm gluten free. Now, to be fair, the arthritis had showed up in my foot first, and that is what prompted me to finally go gluten-free, but after 3 or 4 weeks gluten-free (mostly) the arthritis is EVERYWHERE and the fatigue from it is overwhelming.

I understand why it wouldn't have gone away right away, but why is it so much worse?? Ahh, well, I asked that question here before, so I won't expect any new answers. I'm just so tired from being in pain all day. ALL. DAY.

If I'm really going to stick with this, I need to figure out how to keep my kitchen "clean." Impossible, I know, but if you're the only one gluten-free, how do you keep yourself free from contamination? Any and all tips welcomed!

Since I have two drs telling me there's no way I have celiac, but most likely a combination of an auto-immune disorder and Chrone's (I know, another AI disorder).

First of all, do you think commercially prepared sausage has gluten in it? Although I'm sure it doesn't matter, since I'm positive the tongs weren't gluten-free and the exchange of food in the car on the way there pretty much ensures I ingested some gluten.

I brought a huge salad to eat on the way to the picnic, but I gave in and had a sausage because I was so hungry and everyone else was eating.

Now, if I had Chrone's, would the diarrhea get better on a gluten-free diet??? I have diarrhea one or two days a week now as opposed to 5 or 6 days a week pre-gluten-free. Hmmm. Not perfect, but sounds like improvement to me! And as far as I've read (haven't talked to anyone with Chrone's though) diet makes little difference.

Although, the progression of my diarrhea to arthritis would be better explained by Chrone's rather than, say, Lupus or RA.

Aargh! All I want is freakin' answers. For once I gave in to my arthritis this weekend and spent most of my time at home in bed. But, sheesh, that doesn't work with 3 kids running around dirtying dishes and clothes! And of course the medicine the dr gave me for the arthritis gives me diarrhea so I don't take it anymore.

Hope everyone else had a better weekend than me.

Funny both of you had right side and I had left. I am left-handed. I doubt it means anything, but just interesting.

Just to add to the confusion....I'm left-handed and although my "gout" is in my left big toe, most of the other pain is in my right side from my ankle to my fingers!

Press him to continue tests or refer you. Don't let him fob you off.

My dr's been pretty good so far. He's already confirmed arthritis from the x-ray on my toe; this was before everything ELSE started hurting, so he is not taking the pain lightly. He's already pointed out that some things don't make sense; I'm young for osteoarthritis which seems to making him curious about what's giving me the arthritis, and I didn't develop migraines until I was 31, which is very uncommon.

I have a feeling I'll end up with a rheumatologist. I'll make sure of it.

Can you be referred to a rheumatologist?

The dr said if anything iffy shows up on all the bloodwork he's referring me to a rheumatologist. I USED to have a PPO but now I have an HMO.

But I have a fairly good primary who listens and is willing to refer if he thinks something is over his head.

As Ursula said, one of my daugthers was positive for it, the other negative. I was positive.

The diet is the best indicator, even Enterolab says that.

If you don't get better off gluten alone, try eliminating dairy as well. I believe it was Enterolab's website that said about 50% of people intolerant to gluten are intolerant to casein as well.

Thanks, like I said it was a stupid assumption, given that people who tested negative most likely wouldn't bother with a gluten free diet (thus go looking for support on this website).

I'm still too early into the diet to know if it's helping. It's been less than a month. The diarrhea is different now, though. The days I have it...I HAVE it. But it's not every day now. 2 or 3 days a week, more or less. Less bloating, too. Still gassy sometimes. That's something, right?

I started this quest by eliminating dairy. I've been dairy free a month or so longer than I've been gluten free. I saw great improvement right away, then it got worse than BEFORE I eliminated dairy.

Thanks for all the comments. After I hung up with the dr I started thinking my mother was right and I WAS a hypochondriac.

Is 25 normal, positive or what?

I just got a copy of my bloodwork for all three tests. I can't remember which was which, but for one 3 and below was negative, one was 4 and below, and the other one was 9 and below.

That's according to the lab that performed the test.

If and when you do challenge it though please just have 1 or 2 slices of that pizza. When I did my challenge I went 'whole hog' for a couple of days and when the reaction hit it was so severe my intestines bled.

Have you thought about going with Enterolab? Their tests are the most reliable out there and especially if you suspect you may have other intolerances may be the way to go.

Hee hee.....yes I know. I was just joking, trying to look for some light at the end of this dark tunnel.

I would LOVE to go to EnteroLab for testing (for everything, not just gluten) but there are two things stopping me. First, of course, is the money. I'll only be able to do it if DH gets a full-time teaching job, and as its nearing the end of August, that's looking less and less likely. He is waiting to hear about one job, but if that falls through we're still broke.

Second, I know I have a limited perspective reading about EnteroLab on a celiac message board, but does EnteroLab ever say someone DOESN'T have gluten intolerence or celiac? Stupid thought, but it just occurred to me today that I've never read anyone post about negative results. Which is REALLY stupid given that they wouldn't stick around if they DID turn up negative. Duh.

Anyway, thanks everyone for your insights. I'm definitely keeping up with the diet at least until I get some definitive diagnosis, of celiac or otherwise. It has helped *some*. A little. But it's still early.

Ugh! So then, how do I know??????

I'm planning on staying on the diet (despite continuing diarrhea, though not as bad as before) at least until the rest of the tests are in (Lupus, Lyme, RA, colonoscopy, etc.) because if it DOES turn out to be celiac I don't want to lose that time getting gluten-free. Oh, and if it DOES turn out to be something else I'm eating a whole pizza.

But still....I thought I was close to having an answer and the dr just blew my bubble.

After reviewing my bloodwork, stool tests, and biopsy, the GI doc just told me there's no chance I could have celiac or gluten intolerence.

PLUS, he said all the auto-immune diseases my primary doc is checking me for won't cause the diarrhea! But he did say it could be ulcerative colitis, which is also an auto-immune disease.

He's recommending that I come in for a colonoscopy.