I Feel Terrible

[jaten]

I've been gluten-free for about 4 mos. I have never once "cheated," but I have had several accidental glutenings. Going gluten-free began making me feel immensely better almost immediately. About 2 wks ago, I started feeling bad, and thought I must have been glutened, but I still feel terrible, getting worse, and I really, really don't think I'm being glutened.

My symptoms are different than I had pre-diagnosis because I'm not having severe D, I don't feel like my gut is being scrapped, and I'm not dropping weight. I do have severe cramping, that even the NuLev is not helping much with. I have pain in my right side and just under my sternum. Side to side and sternum to ... everything about my gut hurts and feels raw; the pain has become chronic.

I give! I'm calling my GI today. Just feeling so very lousy I had to express it.

[Guest nini]

Please be patient, it really takes time for your body to adjust, AND if you have been getting accidentally glutened, you haven't been 100% gluten free. You may be intolerant to dairy (at least until your damaged insides heal)... I swear, it took me at LEAST six months before my body started to feel like I was making some progress. And now 3 years into this I still have some really bad days occasionally. I also still suffer from fibromyalgia pain and am under a tremendous amt. of stress in my personal life.

It took your body a long time to get this way, it is impossible for the damage to go away completely even in four months. At this point you are still getting the hang of the diet. And, I bet you that you may still have some hidden glutens in your diet... I just found some in mine a few months ago. (in my generic coffee... yep, they put flour on the lines to keep the lines moving smoothly... brilliant )

Anyway. Don't give up, I don't know what you expect the Dr. to be able to do for you at this point. From what I've read, refractory sprue is extremely rare, and really only seems to be in fact, not refractory, but hidden glutens.

Good luck and keep us posted.

[flagbabyds]

you just have to go slow, make sure all your cosmetics are gluten-free and everything that you put near your mouth or on your body, b/c if one of those has gluten in it, you coul dbe gettting constant gluten posioning.

[jerseyangel]

I agree with the others--there's really not much a doctor can do right now. My best advice would be to go over your diet and make sure you are not getting any hidden or CC gluten. Do the same with your personal care products. Eating out early on is not a great idea, either. I would hold off on that for a while. I did not even begin to feel better until the 4th month. Then I had a relapse of some symptoms, and reflux for the first time after 7 months. The healing can be uneven--and it's different for all of us. Stay gluten-free and try and be good to yourself--rest when you can, maybe take a multivitamin, drink lots of pure water. It will get better

[Lollie]

This won't be very helpful for you, sorry! I am into this for 4 months now myself. I too was feeling great almost immidiately. But now I have more bad days then good. Why? I wondered if there is some turning point in the healing at this particular time, because it seems to be common.

I'm trying to just keep on the course, and I have great hope that eventually I will get back to normal!!!! I hope that this happens for you too!

Lollie

[jaten]

Thanks you for your support! Reading your posts was reassuring. It just helps talking to other Celiacs. I wish there were a support group around here. I'm really glad we have each other.

When I said, "I give." I didn't mean I give up, I just meant "enough already." The pain is so bad that it wakes me at night and is also hugely interfering with work and anything that involves concentration. (Just like pre-gluten-free) I suddenly realized that I have to make a point to smile when I meet people, because the pain has turned my countenance to what appears to be a scowl...actually, it's just PAIN.

I am re-abandoning dairy. I'm not sure it's caused pain, but it definitely causes bloating. I'd given it up once and reclaimed it WAY to soon. I'm also going to completely re-abandon soy. Soy caused major pain and glutened symptoms earlier. I've continued to avoid soy to a degree, but not as diligently as I should. I think when I started feeling somewhat better (I was really, really, really sick pre-gluten-free), I stayed away from gluten like the plague, but wasn't as cautious with other intolerances.

When my GI diagnosed me with Sprue, he said then that he was very concerned that I was having gall bladder issues as well. (He was also concerned that my Celiac would be refractory, but I don't really think it is...I just was not coping well this a.m.) I was so tired of the all the tests I'd been through on my way to a diagnosis, that he agreed to put off gall bladder testing and to take a "wait and see." In addition to the symptoms I was having that indicated to him gb, he said that gb problems are very common in Celiacs.

I can't continue this way, steadily downhill for 2 wks. I called his office today, and his nurse said that even before he sees me, he's ordering two gall bladder tests. (1 is a gallbladder emptying, and I don't remember the other one. She said each test would take about 1 1/2 hours) I don't know when I have the tests. She's scheduling those and will call me back.

I'm really not a complainer, by the time I go to a dr. I usually hear, "Why didn't you come in sooner?" I may do more venting here before it's all said and done.

Thanks again everyone for your ideas, support, and for listening!!

[jaten]

I did switch coffee brands about the same time this started. I moved from Community Between Roasts to Folgers Gourmet Supreme. But all folgers are supposed to be gluten-free, right?

[Guest MyKidsMom]

I would try Aloe Vera Juice. I buy mine from GNC and it takes the pain away immediately so I can sleep. It is supposed to heal from the inside out. It is my number one survival tool, although someone recently suggested Red Bull for brain fog and it worked very well for me, too.

Oh, forgot to mention...had my gall bladder out b/c of lots of stones and haven't noticed great results. I wouldn't rush into removing it and would try other suggestions first, like you mentioned the flush.

[debmidge]

Hi - my husband has celiac disease and since he doesn't like computers I do the typing for him

He still had symptoms for at least the first year after he went 100% gluten-free. He still gets some crazy symptoms of gas but no D. He was misdiagosed for 27 years and finally diagnosed in 2003.

So the wait is worth it, your body will eventually catch up with your gluten-free Diet. But it doesn't hurt to keep regular appts with your GI in the event that you really have an IBS or colitis along with celiac disease.

I have to say that this week my husband doesn't feel well...we've analyzed sources of gluten ...and can't think of any as he eats pretty much plain, unprocessed foods; no eating out for him. So I guess it could still come and go as much as 2-3 years into diet....I know he's not getting gluten from his make up .

Hope your improvements happen soon

Deb

[jaten]

MKM, Aloe Vera juice? I'll have to try it. Is there a GNC brand? Is that what you buy? How will I know if the juice I find is indeed gluten-free. I'll get some today.

No, I won't rush to have my gallbladder removed. Geez, I've had so many surgeries in the past few years, I'd like to keep what's left. I am in the very fortunate position that my GI's family is longtime family friends of my family. He doesn't specialize in Celiac, but he is knowledgeable, and he does have a vested interest in my health. I think he's about, we need to look and see exactly everything we're dealing with and then we'll go from there. The severe malabsorption I was in is resolving with gluten-free, but still pain high on right side (in addition to cramping that is due to the Celiac damage, or possibly IBS too, but....one issue at at time, please)

I was scanned for stones in the multitude of tests that were run, prior to dx. I had no stones, GI has said there are 2 scans that show how the gallbladder is actually functioning. That's what he's ordered. Something about in Celiacs its common for the gallbladder to be slow to empty or something. He's never said, we may have to remove your gallbladder, so I'm trusting that if it's a poorly functioning gallbladder, he changes diet (oh, no!) or adds a med to improve function....

[Nancym]

I think some of us have additional food issues. I felt great on removing gluten then back slid (in symptoms) after about 30 days. I went on the SCD diet and identified nuts and milk as additional problems for me. I'm also thinking some of us might have problems like an IBD. I'm getting a colonoscopy done mid-month.

The SCD diet has done a good job at helping me find my issues.

[jaten]

I think the SCD would be great to determine additional intolerances, and I know I have them. I also think, from what I've read, that the SCD is very regimented. I'm not ready to commit that kind of time. I certainly may reach that point. It really is looking more and more tempting. How do you do it, and feed other people in your house? So far, my husband has been very supportive, and eats the same meals I do. I'm not ready to ask him to do the SCD because I need to. I hope that doesn't sound like a cop out.

For the next several days I am just going to eat very plain, easy-on-the-tummy foods. Chicken, rice, and some cooked fruits and veggies.

Wed., 4/12, my GI has scheduled me for a "gall bladder emptying scan."

Thurs., 4/13 he scheduled me for a "gastric emptying scan." I am to see him, on the 19th, so it will be a while before I know anything. (They're closing the office for a couple of days for Easter)

BUT, meanwhile I will be very dedicated to sticking with foods, that I'm quite certain will be easy on the digestive system.

Thanks everyone for your suggestions and for being there!

[Nancym]

I'd think it isn't that abnormal of a diet once you get beyond the first couple of weeks. You can stick to meat, veggies, eggs and fruits and that isn't difficult for most meals. Some people take awhile to figure out breakfast, but for me I do just fine on eggs/sausage in the morning. So I usually do most of my cooking on the weekend, like make enough meat to have at supper all week. Yeah, it gets a little repetitive, but I'll vary the veggie and have fruits.

[Felidae]

At four months gluten-free I felt pretty lousy too. I had to cut out dairy. Also, some people react to soy.

[jaten]

At four months gluten-free I felt pretty lousy too. I had to cut out dairy. Also, some people react to soy.

Yes, soy has been a big problem for me. I pegged that one quickly. Just within a couple of weeks of gluten-free I realized dairy caused a problem. I switched to Silk....arghhhh! Then recognized it was soy in other products to. I love Amy's frozen meals, but most of them have soy, and they have always made my tummy hurt.

So, here I am a few days into my new Gluten-free Casein-free soy-free diet. I have to say, I'm already feeling considerably better. The constant cramping isn't gone, but so much better and not constant. The bloating is much better, in fact, dropped 2 1/2 lbs immediately, that I know was just "bloat."

I am keeping the appointment for tests next week. One thing that hasn't altered is the deep bruised feeling under my right ribs, that GI has always believed was likely gall bladder. We'll see.

Felidae, how long have you been gluten-free? When you gave up dairy did that help significantly? Are you also soy intolerant?

I think one reason I took soy and dairy back into my diet so soon was because it's really hard to find mainstream foods that are Gluten-free Casein-free and sf! I know others are having to do it also. I would appreciate their weighing in and offering suggestions.

[jinches]

Yes, soy has been a big problem for me. I pegged that one quickly. Just within a couple of weeks of gluten-free I realized dairy caused a problem. I switched to Silk....arghhhh! Then recognized it was soy in other products to. I love Amy's frozen meals, but most of them have soy, and they have always made my tummy hurt.

So, here I am a few days into my new Gluten-free Casein-free soy-free diet. I have to say, I'm already feeling considerably better. The constant cramping isn't gone, but so much better and not constant. The bloating is much better, in fact, dropped 2 1/2 lbs immediately, that I know was just "bloat."

I am keeping the appointment for tests next week. One thing that hasn't altered is the deep bruised feeling under my right ribs, that GI has always believed was likely gall bladder. We'll see.

Felidae, how long have you been gluten-free? When you gave up dairy did that help significantly? Are you also soy intolerant?

I think one reason I took soy and dairy back into my diet so soon was because it's really hard to find mainstream foods that are Gluten-free Casein-free and sf! I know others are having to do it also. I would appreciate their weighing in and offering suggestions.

My son had to have his gallbladder removed. He was having really bad pains under his rib cage going around to the middle of his back. They've done so many tests on him that i'm not sure what the test was called but he had to be sedated for the test. He had a CT scan also and it showed stones. It could be your gallblader you can be very sick if you have stones. My husbands uncles gallblader was really bad and it came on him suddenly. He had really bad stomach cramps said he felt like he was dieing. They had to do emergency surgery on him.

[Felidae]

Felidae, how long have you been gluten-free? When you gave up dairy did that help significantly? Are you also soy intolerant?

I have been gluten-free since June 05 and I was off and on cf since Oct 05. I haven't had dairy for the past two months and I feel great. I eat soy, mostly as in Silk soy milk but I try not to have it everyday. I don't think soy is bothering me. But you are right, it is difficult to find things to eat without dairy, especially because I rarely eat meat.

[jaten]

My son had to have his gallbladder removed. He was having really bad pains under his rib cage going around to the middle of his back.

YES! That's the pain.

They've done so many tests on him that i'm not sure what the test was called but he had to be sedated for the test.

I bet it was the same, a gall bladder emptying scan. I won't have to be sedated, just very still on my back for 1 1/2 hours. If my gall bladder doesn't show up, they'll have to give me morphine. Not because the test is painful, but somehow that makes the gall bladder show up or start functioning, or something so they can see more clearly. I had a CT scan late nov early dec. that showed no stones. They were actually looking for tumors to explain sudden, rapid weight loss. They found none. Celiac diagnosis wasn't far away at this point.

It could be your gallblader you can be very sick if you have stones. My husbands uncles gallblader was really bad and it came on him suddenly. He had really bad stomach cramps said he felt like he was dieing.

Uh, huh, those are the cramps!!! So how are your husband and son both since gb removal. THANK YOU for posting your experience here! I truly hope it doesn't come to that for me, but it helps talking to you

[jaten]

I had the gallbladder emptying scan yesterday and the stomach emptying scan today. My GI's nurse called this evening and said they don't have the results of today's test yet, but my gall bladder is not functioning at all. Nada. Zip. She said I'll be referred to a surgeon to have it removed. She said that when it's not functioning at all, there's really no alternative.

Does anyone have experience with this? Research indicates that it is not uncommon for someone with Celiac disease to have a poorly on non-functioning gall bladder. If I understood what I read, and what my GI has said, what really happens is that the damaged small intestine doesn't send the trigger that should cause the gall bladder to contract and release bile.

I'm really bummed.

[Guest nini]

if you can, get a second opinion about the gall bladder... not saying that they are wrong, but anytime you are advised to have surgery, it is always prudnt to get another opinion. If it's correct then the second opinion will confirm it...

I'm sorry to hear that though, but that would explain why you aren't getting better.

[jaten]

if you can, get a second opinion about the gall bladder... not saying that they are wrong, but anytime you are advised to have surgery, it is always prudnt to get another opinion. If it's correct then the second opinion will confirm it...

I'm sorry to hear that though, but that would explain why you aren't getting better.

That's good advice, cause I'm really, really bummed. I am anxious to feel better, but I've had to have several surgeries in the last few years and not looking forward to another one. Plus, I wonder what life is like without a gall bladder. I believe body parts have purposes. Of course, I guess if it's not doing anything at all....then....

Ok, so how much of a 2nd opinion would you get? That may sound like a dumb question. I'm guessing you wouldn't repeat the test, just get someone else to read it and get their suggestion for treatment???

I don't know. Really blue. I feel terrible. Just got this news about 5:30 last night. (Yes, nurse called after hours.) In-laws coming in today for a few days. They're great, and I was looking forward to their visit. Now I'm just in the dumps, and need to finish getting ready for company. I feel terrible.

[Guest nini]

no don't repeat the test... get another specialist to review the test results and get their opinion. the test results aren't going to change from one testing to another UNLESS the tech doing the test made an error, but that's not as likely.

[Guest Robbin]

I agree with nini about the 2nd opinion, some ins. cos. require that also. I do want to say that you need to act on this very quickly. If his dx is correct, you can possibly get liver damage if your gallbladder is not functioning properly. Are your liver enzymes elevated? ( Maybe you said before, sorry-eyes giving me a prob. today.) Are you noticing any yellow-ness in the whites of your eyes? Things to absolutely avoid are fatty foods. Also, sometimes salad (lettuce, raw cruciferous veggies) can irritate. I have had gall -bladder "flare-ups" alot --have "sandy" stones. It is not something that hurts constantly. If you have constant pain, though no matter what you should do the surgery asap. This is really not something you can "baby" like mine--yours is non-functioning and that can be serious. Take care and keep us posted on your recovery.

[Guest SusieQ]

Sounds to me like it could be gall bladder disease. A lot of middle aged women with weight problems have gall bladder disease. I count myself as one of them. As long as a I limit my fat intake I don't have a problem. However, I know I'm just putting off the inevitable and will have to have it taken out one day. the gall bladder is on the right hand side of the body.

I'd certainly check in with a doctor for this kind of pain.

[jaten]

Good advice. Thank you all for listening and for the practical advice/support. I'll check Monday about a 2nd opinion somewhere. I suspect my insurance will take the surgeon as a 2nd opinion, but I'll find a non-surgeon GI for a 2nd opinion. My GI (who isn't a celiac specialist but in whom I do have confidence) is the one who diagnosed my Celiac in Dec. and has suspected that I already have Celiac complications. He ordered the test and is now refering me to a surgeon. Sure, a surgeon will want to do surgery, but ....I don't know even know, but what......

This board is phenomenal. I would be so very lost without the support, experience of others, and just the understanding of the emotions that go with all of this.

Robbin, I knew that liver problems could be an issue with Celiac, I did not know that one of the causes of liver issues could be a malfunctioning/non-functioning gall bladder. Ok, sounds like I need to move quickly in my proactivity. I know that I can't go much longer feeling the way I do. The good news, is that I don't have any signs of jaundice yet. No yellow in my eyes, etc. I don't think my liver enzymes have been checked recently....or they were normal so no mention was made. BUT, the GI nurse when she called Thurs. evening was pretty adamant that this needed to move rather quickly.

My GI hadn't mentioned liver concern, but he has mentioned concerned about gastric emptying, so that was the test that was done on Thurs. I'll be certain to ask him about my liver when I see him Wed., and request a liver enzyme test if one wasn't done in the huge battery of tests I had in the fall.

Thank you all! A deep thank you.