New Symptom; Doctor Won't Test For Celiac

[Nancy19]

Hi everyone -

I need to know if any of you have experienced what I'm currently going through. I wrote a post last fall with my suspicions about possibly being celiac. I got very ill in October with pneumonia, so I was unable to go to my doctor about getting tested for celiac because of the bills I incurred from the pneumonia - which I am still paying, BTW. Anyway, a week ago Friday I started getting diarrhea and thought I was coming down with stomach flu, but I never got the nausea, vomiting, fever and general "hit by a truck" feeling that generally accompanys it.

However, eight days later and I still have the diarrhea. It's strange - I have a very noisy, gurgly feeling in my intestines that almost feels like fluid or air moving through, like I'm going to pass the largest amount of gas in the world, followed by an almost immediate need to go to the bathroom. Immodium has had absolutely no effect on it. At first it was regular diarrhea - basically, liquid poo with some chunks thrown in for good measure, then on Wednesday it started getting kind of foamy on top. Thursday at work was brutal and I was getting worried that it wasn't going away so I made an appointment to see my doctor on Friday. She took all of my information, drew blood and had me give a stool sample. I asked her to test for celiac, and she flat out said it's not celiac. She mentioned it could be an infection, IBS, or a couple of other things, but definitely not celiac. She gave me omeprazole and told me to take Metamucil and eat a bland diet (plain rice, baked chicken, whole grains) pending the outcome of the bloodwork, which I will get on Monday. If the bloodwork doesn't show anything, I may have to have a colonoscopy. Meanwhile my liquid poo diarrhea has now become a cloudy, somewhat yellowish fluid with very little poo in it, and what solids it has are lighter in color than normal (probably because I haven't been eating much - Im kind of afraid to at this point). I still have the gurgling, noisy feelings and occasional cramping. It's getting very annoying as I have to run to the bathroom at least once an hour, and last night it seemed I was going every 20 minutes or so, and I went through two rolls of toilet paper. So you can imagine how my poor backside feels.

I recently discovered that I am lactose intolerant, and was feeling pretty good until this bout of diarrhea hit. I don't really like the tast of lactose-free milk or soymilk, so I bought Lactaid tablets and take one of those any time I eat dairy or drink milk. It seems to be working for me, and I am fairly certain this diarrhea is not related to the lactose intolerance.

Have any of you had diarrhea like this before and could it be a symptom of celiac? I've been suspecting I have celiac but haven't tried going gluten free and I'm wondering if I should, depending on what the bloodwork and other tests show. Or should I insist on testing for celiac?

[Kelly777]

Your story is the VERY reason I just did it on my own. I don't want to hear how I don't know my own body and don't know what is going on. I was really sick like you are describing for 7 months until someone suggested that I might have Celiac. So, I researched it and within 24 hours without gluten I was 150% better. So when one of these genius doctors tries to get all Godlike with me I get in their faces and tell them AS GOD AS MY WITNESS I WILL NEVER EAT GLUTEN AGAIN. Then they flat out know it is what I have and that I was right in giving it up. And if you can't go to another doctor, just do it yourself and tell her, "Yeah, I did it and I am sooooo much better you can't even believe it!!" Tell them how many times you are going and how it is interfering with your life and remind them if they are wrong about YOUR diagnosis or the lack of a diagnosis your continued consumption of gluten can lead to lymphoma and that is a sad state of affairs. One that shouldn't be minimized by anyone in the medical profession.

[Chiana]

However, eight days later and I still have the diarrhea. It's strange - I have a very noisy, gurgly feeling in my intestines that almost feels like fluid or air moving through, like I'm going to pass the largest amount of gas in the world, followed by an almost immediate need to go to the bathroom. Immodium has had absolutely no effect on it. At first it was regular diarrhea - basically, liquid poo with some chunks thrown in for good measure, then on Wednesday it started getting kind of foamy on top.

That actually sounds exactly like something I had 4 years ago, but it wasn't Celiac. It was salmonella. After 9 days of diarrhea I got into a clinic and got some hardcore antibiotics, which cleared it up. I had diarrhea for 11 days total. I was told that it was so severe because I 1. took anti-diarrheal medications, and 2. stopped eating, thinking it was food poisoning. Personally, knowing what I know now, I think the Celiac worsened the symptoms, but what you are experiencing is probably an acute infection.

[Nancy19]

That actually sounds exactly like something I had 4 years ago, but it wasn't Celiac. It was salmonella. After 9 days of diarrhea I got into a clinic and got some hardcore antibiotics, which cleared it up. I had diarrhea for 11 days total. I was told that it was so severe because I 1. took anti-diarrheal medications, and 2. stopped eating, thinking it was food poisoning. Personally, knowing what I know now, I think the Celiac worsened the symptoms, but what you are experiencing is probably an acute infection.

Really? Wow, I never thought of food poisoning, because I always thought that made you violently ill, and aside from the diarrhea I don't feel sick at all. I had been taking Immodium until yesterday morning when my doctor prescribed the Prilosec and told me to take Metamucil and I've basically been eating next to nothing because I am afraid to. I suppose the bloodwork will show if it is salmonella. Thanks!

[cassP]

wow- i cant believe your doc- usually the docs refuse to test UNLESS u have the diarreaha... geez...

1st of all- it is your body and your health- just takes a simple blood test- demand it- your doc has no right to refuse a celiac test to u.. thats just ridiculous!!!!! absolutely ridic

2nd- it could just be classic celiac... or a parasite ... or BOTH. i had salmonella in japan- i had D for 10 days- and it was just regular D... i didnt always have D with gluten- usually had a combo of C & D... also some malabsorption & fatty movements. and- i also had the foam you're talking about- not exactly sure what causes that. i also had the gurgling liquid going thru ur intestines sound and feeling.

you really really really need to get a celiac test before you go on the diet- to get those answers settled once and for all. and you also need to check for other things too- like infections- so that you dont miss anything.

good luck- and dont back down from your doc- your health is YOURS

[Chiana]

Really? Wow, I never thought of food poisoning, because I always thought that made you violently ill, and aside from the diarrhea I don't feel sick at all. I had been taking Immodium until yesterday morning when my doctor prescribed the Prilosec and told me to take Metamucil and I've basically been eating next to nothing because I am afraid to. I suppose the bloodwork will show if it is salmonella. Thanks!

Your situation sounds *exactly* like mine. Try to start eating again...it really helps. Let us know what your doctor says. I hope you get feeling better soon.

[cassP]

Your situation sounds *exactly* like mine. Try to start eating again...it really helps. Let us know what your doctor says. I hope you get feeling better soon.

yes me too- when i had salmonella- i didnt feel sick like u do when u get a "stomach bug" or food poisoning. i had some cramping-- but mostly just nonstop D. i would have to starve all day to make it thru work... id get home and eat cause i was STARVING.. and then i'd have maybe 2 minutes to lie on my stomach, and the rest of the night was in the bathroom

[Nancy19]

Well, all my tests came back negative - no virus, no infection, no salmonella or other food poisoning. Nothing. My doctor simply has no explanation for it. She told me to continue taking the Prilosec and the fiber supplements, stay away from dairy and keep eating the BRAT diet until I'm feeling completely better.

Today is the first day I actually feel close to normal. Had some d this morning, but there is more, ummm, *solid* content to it. In other words, it's looking more like poo than yellow fluid with a few small chunks. I made it through the entire work day without having to run to the bathroom! My stomach is still doing the rolling and gurgling, but definitely not as much as even two days ago. I think another few days and I'll be back to what serves as normal for me.

I asked about celiac testing again and she said that it's "highly unlikely" and that testing is unnecessary. Since I've incurred a slew of new medical bills, I am going to ask to be tested again when I go back in a few months to have my thyroid check up, because I do think something's going on. I always have digestive issues and while discovering my lactose intolerance and taking lactaste tablets before drinking my daily glass of milk or eating dairy has helped immensely, I don't think that's all it is.

Thanks for listening and for all your help!

[Nancy19]

Oh, one more thing that I forgot - my TSH level is 117, which is WAY high. It's alwlays high - at one point several years ago it was 398. I honestly don't remember the last time it was within normal range. Doc upped my Synthroid dose to 250 mcg and wants to see me in 3 months. To the best of my knowledge I do not have Hashimoto's, just hypothyroid.

But my blood pressure is excellent.

[cassP]

Oh, one more thing that I forgot - my TSH level is 117, which is WAY high. It's alwlays high - at one point several years ago it was 398. I honestly don't remember the last time it was within normal range. Doc upped my Synthroid dose to 250 mcg and wants to see me in 3 months. To the best of my knowledge I do not have Hashimoto's, just hypothyroid.

But my blood pressure is excellent.

a TSH at 117????? or 398???? surely you have that messed up with a different lab order right????? i mean usually when it gets in the teens-> doctors say it can lead to emergency situations.

and again- to be having unexplained crazy diarreaha and to have a doctor NOT allow a Celiac panel is just ridiculous. i want to go in and yell at them

[Nancy19]

No, sadly those are the real numbers. When it was 398 my doctor told me she didn't know how I was functioning, but I don't know that I was. I was severely lethargic, depressed, my skin was horribly dry, my hair was falling out, among other things. I was between doctors at the time, didn't have insurance and was out of work, so I didn't have money for testing or meds. I think I was off my meds for two years. Even at 117 it's not so bad, although I don't know if I'm just used to the way I feel. I was diagnosed as hypothyroid in 1989 and it's hardly ever been where it should be. It'll go down to the 2 or 3 range and stay there for a little while, then starts creeping up so at my next appointment my doc has to increase my dose. The best I felt was when it was around .5, but my doctor told me that was too low and lowered my dose, so of course it went up. I was such an uninformed patient at the time.

Anyway, about the diarrhea - I had two good days and then last night it came back. I went out for the day with a friend and I ate restaurant food, and as much as I really really (really) wanted the buffalo chicken sandwich, I settled for grilled chicken sandwich - chicken breast, lettuce and tomato on a bun with some kind of sauce (not mayo). Later I had soup. On the way home I started getting the rumbly feeling in my tummy and sure enough, when I got home, I had diarrhea. I had it twice last night and twice today. It seems to have settled down now but if this is just a temporary lull in the action, my doctor's getting a call Monday.

A friend of mine suggested I get a second opinion and get tested for celiac, without even knowing of my suspicions. My chiropractor suggested I try a gluten free diet and see how my body responds, but if I'm going to get tested I might not want to do that just yet. With my lactose intolerance, she said it wouldn't be surprising if I at least have a gluten sensitivity. I have goofy insurance so I will have to wait until the bills from this illness have been paid before I can even think of getting more tests done.

[ravenwoodglass]

Nancy if you can't afford testing right now and it will be awhile till you can you can just do the diet. There are folks here that are 'self diagnosed' because their tests were a false negative or they went on the diet, felt better and didn't want to do a challenge. You don't need your doctors permission to be gluten free.

[Debbie B in MD]

If your TSH is like that and your doc isn't doing something about that, you need a NEW DOCTOR. Also if she is refusing a celiac panel, you need a NEW DOCTOR!!!!! Hashimotos and celiac run together. Also you most likely are not absorbing your meds, yet another indication of celiac possibilites. I have had thyroid issues since I was 9. I am 44. Please, please, get that under control. I have just discovered the celiac and I am sure when I get my latest round of thyroid blood work back my tsh will be much better. Last year it shot up to 20. It was still in the 7's 4 months ago. Now I am gluten free. I am sure it will be better. Good luck and keep us posted.

[cahill]

Oh, one more thing that I forgot - my TSH level is 117, which is WAY high. It's alwlays high - at one point several years ago it was 398. I honestly don't remember the last time it was within normal range. Doc upped my Synthroid dose to 250 mcg and wants to see me in 3 months. To the best of my knowledge I do not have Hashimoto's, just hypothyroid.

But my blood pressure is excellent.

WOW I know how bad I felt recently when my TSH was 6.29 (range 0.34 - 5.60) I cant image 117

Did they test you for Hashimoto's?? recently ??