Now What?

[JRock]

I'm at a loss - for the past 1.5 weeks I've been having abdominal pain, intestinal pain, and D (sometimes every five minutes, sometimes not so often, but always D). I've tried all of the OTC anti-Ds with no luck. I've been on a diet of rice, broth (gluten free), chicken, well-cooked carrots, grape juice, and bananas for the past week (pretty much the SCD with rice). But it's still happening! I take donnatol for the intestinal pain when I can't handle it, I haven't taken any vicodin in a week because the pain lessened, and I keep popping the anti-Ds. I've stopped doing that as of today because it's obvious that they aren't helping. Cutting out the dairy HAS helped decrease the pain.

So I call the front desk at my doctor (I never get to speak with my Dr. without an appointment) and the nurse calls me back. She says one thing, "Eat some cheese." Now, I've pinpointed that cheese causes me pain, but I'm getting downright embarassed considering I have a ladies room at work that an entire building shares (with probably 50 women). So now what? Do I eat the cheese to get rid of the D? What if it doesn't help? I don't know what to do. My mom told me to eat some yogurt with probiotics. Again, dairy. It's a constant pain, but it's not terrible, I can handle it, but it's been 1.5 weeks of this pain and D! I've gone through everything I put on and in my body with a fine-toothed comb!

I don't know what to do next... I almost want to just stop eating because this is getting ridiculous. And I can't imagine 1.5 weeks of D is good for me. Sorry for ranting, I just don't know what to do next.

Jen

[lizard00]

Try not eating the rice and see what happens. If I eat too much of it, it's not so good.

As for probiotics, try acidophilus. Acidophilus is especially helpful to the small intestine, which is where we celiacs need all the help we can get. You can buy it in a capsule or a powder, and forgo the yogurt. My doc says it's like eating 10 yogurts at once. It's much more potent and effective.

[DreamWalker]

Your doctor suggested cheese? Really? That surprises me, especially if you already know that you have a problem with dairy.

Have you tried sheep or goat milk yogurt or cheese? I cannot tolerate dairy and those have yet to cause problems plus they have the same probiotics. Also, have you ever had kombucha? Although it's pricey, I've found the raw organic kombucha they sell at Whole Foods helpful, especially the ginger flavored version. It's a fermented tea with good bacteria like yogurt.

For me, grapes cause stomach upset and rice tends to pass right through me. But, that's just me. Bananas aid diarrhea though. Yet, only if I eat quite a few of them.

I hope you feel better soon.

[ravenwoodglass]

That nurse was a twit and you should mention her advice to your doctor the next time you see him. If this doesn't clear up soon do get into the doctors and have them do stool tests. You could have picked up something like salmonella or another foodborne bacteria. When antidiarheals don't work and it has gone on as long as this has it very well may not be gluten related. I would be very tempted to call them back tomorrow if this hasn't ended yet and tell them you ate some pnut butter snacks and want to be checked to be on the safe side, even if you haven't touched anything with pnut butter paste.

[YoloGx]

I agree--its either something you are still eating that you are allergic to or its bacterial/microbial or candida overgrowth. Besides the pro-biotics (of which you can get some that are not milk based) I suggest you also try taking slippery elm and/or marshmallow root to sooth your intestines and heal your villi. For me, I would be allergic or react to the fruit, especially the grape juice. Blackberry leaf helps against D. Some kind of Ipecac or Pepto Bismol might help too...

Bea

[billmac]

I don't know if this is a help or not but a very, very old remedy for diarrhea is a heaped tablespoon of corn flower dissolved in a glass of water. You would have to be pretty sure the corn flower had no traces of gluten though.

Bill

[dilettantesteph]

In yoghurt the lactose is pretty much predigested and supposed to be O.K. even if you are lactose intolerant. I found probiotics really helpful for me during healing. I took BioK (dairy).

[ang1e0251]

In yoghurt the lactose is pretty much predigested and supposed to be O.K. even if you are lactose intolerant. I found probiotics really helpful for me during healing. I took BioK (dairy).

Don't believe it. I cannot tolerate yogurt. If you have a problem with dairy, fresh dairy like yogurt is especially problematic. I can have aged cheeses and a little butter but yogurt really gives me pain.

If I were having D and pain problems, I personally wouldn't go near it.

[ksymonds84]

Something you may want to consider. I discovered this little trick on the IBS forum and it does work for me (I still deal with the IBS issues from time to time when I am really stressed out). I take caltrate D 3 times a day WITH my meals and it really worked but had to cut back to twice a day because I went the other way. It has to be calcium bicarbonate with D and make sure its gluten free and doesn't contain any extra magnesium if you get a generic other than the pink and white caltrate bottle. You should start off with a half tablet each meal because your body can produce more gas as its getting used to extra calcium (which you need anyway) so go slow for a few days. It only took 2 days for it to control my diarrhea! It is extremely important to take with food and allow about 4 hours in between. Just a thought since it has worked wonders for me.

[JRock]

Thank you for all of your suggestions - I'm going to get some Caltrate-D on my lunch break. I've been taking acidophilus for the past month, maybe I need to step it up to another type of probiotics? I'm going to make an appointment if it doesn't stop in the next two days. I can deal with it at home, but at work I'm downright humiliated. Oh well.

I'm also going to get some goat cheese - I'm pretty desperate I'm worried about cutting out rice though, I don't know what else to eat. If I don't eat enough, I get a migraine. So maybe I should switch to potatoes? I need some kind of starchy carbs in my diet or I'm hungry every hour. What a pain this body is. I really hope it's not like this for the rest of my life, I'm only 27 and I want to get healthy so I can have a baby, but at this point, I can't imagine dealing with all of my body issues plus morning sickness and everything else.

Just another curve ball from life I suppose

[ang1e0251]

Are you really sure it's the rice? You might want to try cutting the fruit first and see what happens between that and the Caltrate D first. I couldn't tolerate any fruit for months and now I limit myself. The rice is my staple.

Of course do what you think is right for you. I would just suspect the grapes first.

[ksymonds84]

I was told to eliminate any unnecessary vitamins, supplements etc and just do the caltrate d for 3 days and see how it goes. You can add back in the probiotics if you think you still need them later. Good suggestion on eliminating the fruit for awhile too! Hang in there and keep us posted!

[YoloGx]

I have found yams and sweet potatoes safe starches. Same with (washed!) cooked quinoa. Teff is also easy to digest. Potatoes can be iffy for some. They are for me...

Bea

[JRock]

Hi again,

Two weeks now of this. I'm not sure this has anything to do with it, but my husband deployed right before it started. I'm not really that stressed and I can't imagine stress over him being gone could cause it for this long, could it? My mom suggested switching to better acidophilus, which I just bought, and I've been taking the Caltrate-D and of course my digestive enzymes. I've cut out all of the other supplements. I've also cut out the grape juice and bananas. Because of convenience, I didn't cut out rice during the work week, but I'm cutting it out this weekend. I just bought some sweet potatoes. So I'll let you guys know what happens. Oh, and my mom also suggested bottled water for a while - I guess I had belly problems when I was a baby and it turned out there was a leak in one of the pipes outside our house and that was making me sick. Because of all the D, I bought some smart water along with a big jug of spring water.

I'm curious about the possibility of something like salmonella, but wouldn't I have other symptoms? I'm tired and irritable, but I imagine anyone would be after two weeks of this. Ok, enough of my whining, I'll let you know what happens. I'm making an appointment with my doctor Monday.

Jen

[ksymonds84]

Hi again,

I'm curious about the possibility of something like salmonella, but wouldn't I have other symptoms? I'm tired and irritable, but I imagine anyone would be after two weeks of this. Ok, enough of my whining, I'll let you know what happens. I'm making an appointment with my doctor Monday.

Jen

It's a good idea to go the doctor. It could possibly be a bacterial infection. My daughters friend who is twenty has had diarrhea for over two weeks and went to the E.R. and found to have a bacterial infection in her colon. When stress triggers my IBS symptoms, I can get diarrhea everyday but its only usually in the morning which is a typical IBS pattern. Sounds like more going on than stress. I hope you can get an answer on Monday{{Huggs}}

[ravenwoodglass]

I'm curious about the possibility of something like salmonella, but wouldn't I have other symptoms? I'm tired and irritable, but I imagine anyone would be after two weeks of this. Ok, enough of my whining, I'll let you know what happens. I'm making an appointment with my doctor Monday.

Jen

Not neccessarily. I had a real bad bout of salmonella a few years ago. I was still undiagnosed at the time and of course had D on a daily basis anyway so for a little bit I thought it was just my "ibs" becoming more severe. The thing was that antidiarheals always had helped with my daily D but when I had salmonella they were only effective for about an hour then the D would start again. The only other indication I had was the first day when I felt lightheaded before the D begans. I had to badger my doctor to do a stool test and she was extremely apologetic when she called after she got the results. A short course of an antibiotic and I was back to my 'normal' D.

With all the stuff they are recalling right now with the peanut paste contamination it would not be out of line for you to ask to be tested.

[JRock]

Thank you for your support - today I only ate eggs and potatoes for my meal - honestly I don't want to eat. I wonder if a liquid fast might temporarily relieve my symptoms. I've been drinking the smart water to help with electrolytes. Today has not been good - lots of D and pain - to the point where I've been laying in bed in the fetal position with a heating pad on my belly. I tried donnatol and an extra dose of acidophilus, but an hour later, the pain was almost unbearable, so I finally took a vicodin.

Maybe I need to take a closer look at my lotions, lip balms, I don't know. I'm definitely calling the doctor first thing tomorrow when they open - this has gotten to the point of being absurd. I don't know what it is, but I'm going to insist the doctors test for everything from parasites to bacterias. I'm going to keep on my diet of bottled water, no supplements outside of the Caltrate-D and acidophilus, and sweet potatoes for now. I don't want to eat because I know I'll wind up in pain, but I'm sooo hungry

It really sucks that my hubby isn't here - he's the strongest support I have. Anyways, I'll let you know when I get an appointment.

Jen

[JRock]

So... I had my appointment with the doc Monday - he ordered poop cups and referred me back to the specialist who gave me the endoscopy (but didn't have the manners to call my himself with the diagnosis). The first batch of cups showed no parasites, e. coli, salmonella, or other food poisoning-type sickness. And yet I'm still in pain with D. So I saw the specialist yesterday who ordered a blood test. Tell me if this is weird. He said the initial blood test was 100+ for Ttg antibodies. I participated in a research study and just got the results from December which showed 125 Ttg antibodies. My test in late December showed an 86 on the Ttg antibodies and my Dr. insists I'm getting glutened! But I've been so careful! Of course they think I'm cheating but come on! It's not worth it! So he's running another blood test, and when those results come back, he says he wants to schedule a CT scan for my abdomen. He said sometimes intestinal tumors can be present in celiac patients causing my symptoms.

So I haven't relayed that info to my hubby who is deployed (why worry him with possibilities? Unless I know anything...) but I'm hoping the CT happens ASAP because this pain is terrible. It runs from right beneath where my ribs come together to my belly button then spreads out through my intestines. This is not fun. Luckily I have the vicodin if I need it. My Dr. says using it for this pain is ok. So that's the latest, we'll see what happens. This disease is a pain in the butt!

Jen

[RiceGuy]

While I haven't an answer for you, I do know many acidophilus supplements contain milk. Might that be worsening things, or elevating your Ttg? Other than that, I'd suspect CC. If everything is really gluten-free, then what about the glue used on boxed items (on the flaps), stickers, something at work perhaps? Laundry detergent/softener?

It's obviously something you'd not normally suspect.

[ravenwoodglass]

So... I had my appointment with the doc Monday - he ordered poop cups and referred me back to the specialist who gave me the endoscopy (but didn't have the manners to call my himself with the diagnosis). The first batch of cups showed no parasites, e. coli, salmonella, or other food poisoning-type sickness. And yet I'm still in pain with D. So I saw the specialist yesterday who ordered a blood test. Tell me if this is weird. He said the initial blood test was 100+ for Ttg antibodies. I participated in a research study and just got the results from December which showed 125 Ttg antibodies. My test in late December showed an 86 on the Ttg antibodies and my Dr. insists I'm getting glutened! But I've been so careful! Of course they think I'm cheating but come on! It's not worth it! So he's running another blood test, and when those results come back, he says he wants to schedule a CT scan for my abdomen. He said sometimes intestinal tumors can be present in celiac patients causing my symptoms.

So I haven't relayed that info to my hubby who is deployed (why worry him with possibilities? Unless I know anything...) but I'm hoping the CT happens ASAP because this pain is terrible. It runs from right beneath where my ribs come together to my belly button then spreads out through my intestines. This is not fun. Luckily I have the vicodin if I need it. My Dr. says using it for this pain is ok. So that's the latest, we'll see what happens. This disease is a pain in the butt!

Jen

If I am repeating stuff you have already checked please forgive me. Do you have pets or feed the birds? Food and litters can be sources of CC. Do you do crafts? Are you remodeling? There are products there that can be a problem. Have you checked all your personal products, shampoos, lotions, conditioners, hair color, soaps all can be an issue. Have you checked to be for sure and for certain that all meds and supplements are gluten free? They do not have to be labeled and a call to the maker of each is a good idea. Script drugs that are generic can change their binders at will so even if a generic script was safe when you started taking it formulation of the binders may have changed. One last thing if they are doing any testing on you that requires you to drink a barium mix do make sure it is gluten free. The ones they usually use aren't. It will be thin and closer to the consistancy of water than the milkshake solutions that are commonly used. Your GI seems to be competent so I am assuming he will know this but not all do. I do hope you get this figured out soon.

[Del]

I take caltrate D 3 times a day WITH my meals and it really worked but had to cut back to twice a day because I went the other way.

I also learned this little tid bit from the IBS forum.....by saying you had to cut back because you went the other way.....do you mean taking the three a day Caused diarrhea? I was doing fine on 3 a day until recently....now the watery diarrhea is back with a vengence. I have had the flu so it may be due to that. Who knows with this difficult disease?

[ksymonds84]

I also learned this little tid bit from the IBS forum.....by saying you had to cut back because you went the other way.....do you mean taking the three a day Caused diarrhea? I was doing fine on 3 a day until recently....now the watery diarrhea is back with a vengence. I have had the flu so it may be due to that. Who knows with this difficult disease?

[Del]

Hi Kathy....

Thanks for the reply....no, I didn't change formulas....take Kirkland's Calcium 500 mg + D (Costco). I did cut back to two yesterday and seem to be better today. But I really do suspect my problems have something to do with the flu I had.

Hope you're having a good day!!!

Elaine