Could Use Your Opinions

[ali11]

(I am a 20 yr old female) For more than 5 months now, I have been nauseous most every morning. I have to force myself to eat something, and usually the only thing I can tolerate and get down is something really sweet, like a dessert, which I know is not healthy but it's all I can handle. Lately, even just looking at food or thinking about what to eat in the morning makes me gag. By lunch time, the nausea is gone, but I have no appetite. I'll force myself to eat little meals so again, I'm eating something. Then by dinner time, things are normal and I'm very hungry. Not every time, but often when I eat out at restaurants I have diarrhea after. And my stools have been orange in color for about 5 months too. I also have suffered from fatigue for over 2 years. Lately I have been getting headaches a lot and occasionally will have numbness in my feet and toes, as well as pins and needles in my hands and fingers. Finally, I have had bad knee problems for almost a year now, and they are not healing near as fast as they should. My muscles are also really weak in my legs too. I'm wondering if I do have celiac disease, if it could be prolonging my recovery from the knee pain and also causing the rest of these symptoms. For anyone who has personal experience, I would really appreciate your input. Thank you.

[wschmucks]

It sure sounds like you have Celiac. Get to a good GI pronto and demand a Celiac panel blood test. The pins and needles is a big tip off, I had the same thing too-- my finger or foot would get totally numb for a few hrs (soo wierd!). Take it really seriously though, you need to get tested. Also an idea for breakfast-- do you think maybe you could do a protein shake? or some sweet flavored yogurt? Chocolate covered almonds? Try to get snack throughout the day if you cant eat. I had the same problem.

[mommida]

I recently had my gallbladder taken out after having the worst nausia of my life. That is after 5+ years gluten free. Hashimoto's for 15 years. Recent diagnoses of Pernicious anemia too. The pins and needles pain is most likely from a vitamin B12 deficiency. Get to the doctor pronto and try and get this figured out. You should get a refferal to a gastro.

Start putting together a timeline of symptoms and a food journal. That could help the doctor realize how serious your case is and how you need care.

[ali11]

Thank you so much for the replies, sorry it took me so long to respond. I have been trying to be more aware of symptoms after eating, and I've noticed that whenever I eat bread, for instance, I have bad stomach pain after. The nausea in the mornings has also been getting worse, the last week or so I am nauseous and gagging upon waking before I even think of eating breakfast. I'm going to try to get in to see my doctor as soon as possible.

[Mskedi]

Hopefully you'll figure out what's going on soon.

I don't know how bad your nausea is, but when mine is annoying, but not quite debilitating, I can usually down a small fruit smoothie made with yogurt, soy milk, and frozen berries & fruits. I think the fact that it's not solid and it's cold helps it stay down. Several months ago when I had a particularly bad reaction to an accidental glutening, that's all I could eat for about a week. (I also got some chewable vitamins to suck on in an attempt to get SOME, albeit minimal, nutrition).

I don't know if that will work for you, but I thought I'd throw it out there.

[Megs613]

I would get in to see a GI or at least demand a Celiac panel. I've had terrible nausea and sometimes mine would go on all day, worst in the morning though. I'd have occasional diarrhea too. My blood test panel was positive, scope was negative....enterolab showed gluten intolerance and that I carry one of the celiac genes and one of gluten sentivity genes.

I've been on gluten for 6 weeks, and most days it is better, but I still have bad days here in there and mornings are always the worst. Sucking on a peppermint really helps me too.

[ali11]

Thanks for the advice. I finally went in to see my GP today, because I needed a referral from her first, and the first thing she said after I told her my symptoms was "it sounds like celiac disease". She said there's also a chance it could be the beginning stages of colitis as well. I made an appointment with a GI, but it isn't for a week and half. My doctor told me to try to avoid fatty foods and dairy, and she wants me to come in for a blood test on Monday. For the most part I should continue to eat how I have been, even if it causes pain, because if I don't it could skew the results of the test, right?

[ravenwoodglass]

Thanks for the advice. I finally went in to see my GP today, because I needed a referral from her first, and the first thing she said after I told her my symptoms was "it sounds like celiac disease". She said there's also a chance it could be the beginning stages of colitis as well. I made an appointment with a GI, but it isn't for a week and half. My doctor told me to try to avoid fatty foods and dairy, and she wants me to come in for a blood test on Monday. For the most part I should continue to eat how I have been, even if it causes pain, because if I don't it could skew the results of the test, right?

Yes you do need to stay on the gluten until your blood and endo (if your having one)testing is finished. As soon as that is done go ahead and get on the a trial of the diet. You don't have to wait for the test results.

[newgfcali]

You might try chewing on a little ginger in the morning if you can. It might help to soothe your stomach.

[kareng]

I hurt my knee a year ago skiing. Not bad enough to be treated but annoying. Wouldn't completely go away. After being gluten-free for 2 weeks, it really got better. Still hurts a little when I do a lot but almost gone.

Also, the scent of lemon is good for nausea. Suck on a lemon drop or sniff some lemon juice.

[ali11]

I hurt my knee a year ago skiing. Not bad enough to be treated but annoying. Wouldn't completely go away. After being gluten-free for 2 weeks, it really got better. Still hurts a little when I do a lot but almost gone.

Also, the scent of lemon is good for nausea. Suck on a lemon drop or sniff some lemon juice.

That's really encouraging to hear. I talked to my physical therapist yesterday about the possibility of me having celiac disease, and she said it could definitely be contributing to my pain. She seemed kind of relieved, honestly, because she's been treating me on and off since July 2009, and I'm still in lots of pain. So I don't know, I don't have the blood test results yet or anything, but it would be kind of amazing if that's why my knees haven't gotten better.

I just can't wait until I see the GI and hopefully find out an answer.

[Pac]

That's really encouraging to hear. I talked to my physical therapist yesterday about the possibility of me having celiac disease, and she said it could definitely be contributing to my pain. She seemed kind of relieved, honestly, because she's been treating me on and off since July 2009, and I'm still in lots of pain. So I don't know, I don't have the blood test results yet or anything, but it would be kind of amazing if that's why my knees haven't gotten better.

I just can't wait until I see the GI and hopefully find out an answer.

Adding a bit of hope for your knee:

I hurted a tendon at the back of my tight about six years ago. It looked like it's never gonna heal. I tried everything, ointments, letting it rest with no exercise for months. Every time I got back to the gym, no matter how slow I started, the injury was back within a week. Last spring, after only a few weeks of gluten free diet, it healed. It didn't just get better, it was gone - no trace of pain, no movement restriction, as if nothing was ever wrong with my leg.

[Black Sheep]

I also have found that ginger is very good for nausea. Ali, if you don't like to eat fresh ginger, you can always slice some up and make a tea out of it, even add peppermint, which is also good for nausea. I can't stand peppermint, so I substitute spearmint leaves. Not sure if the spearmint helps or not, but it sure is tasty! Another good way to take ginger, if you don't like the tea, is in capsule form. It's also quicker and easier than making tea.

That's very encouraging, what I'm reading about knee problems vanishing after going g.f.! I have an old (minor)knee injury as well, from slipping in a spilled drink at a grocery store and falling smack on my kneecap. It flares up if I climb more than a few stairs, so I'm hoping being g.f. will help this annoying problem.

Keep us posted on how you're doing, Ali. This is a great place to come for empathy and understanding, as well as advice!

[ali11]

I saw the GI's PA today (they asked if I was ok with it and I said yes). He was really nice and took the time to make sure he understood all my symptoms. The blood tests I had done came back normal, but with my allergies, asthma, and being prone to sinus infections, I guess there's a good chance of a false negative. So two weeks from today I'm having both an endoscopy and a colonoscopy done. Yikes. And in the meantime, I'm going to start going gluten-free. I really hope this helps. It's so great to hear these stories about knee and leg pain getting better too. I really hope that this can help my pain. It's been almost a year now that I've been going through it, and all of the doctors say that I shouldn't still be in pain, but none of them no what to do to help me. If being gluten-free can fix both my stomach and knee problems, it will be well worth the sacrifice.

[ravenwoodglass]

I saw the GI's PA today (they asked if I was ok with it and I said yes). He was really nice and took the time to make sure he understood all my symptoms. The blood tests I had done came back normal, but with my allergies, asthma, and being prone to sinus infections, I guess there's a good chance of a false negative. So two weeks from today I'm having both an endoscopy and a colonoscopy done. Yikes. And in the meantime, I'm going to start going gluten-free. I really hope this helps. It's so great to hear these stories about knee and leg pain getting better too. I really hope that this can help my pain. It's been almost a year now that I've been going through it, and all of the doctors say that I shouldn't still be in pain, but none of them no what to do to help me. If being gluten-free can fix both my stomach and knee problems, it will be well worth the sacrifice.

Do not go gluten free until after the endo is done. You need to be actively eating gluten for the endo to have any chance of being accurate. Wait until the endo is done and then go gluten free that day.

[ali11]

Do not go gluten free until after the endo is done. You need to be actively eating gluten for the endo to have any chance of being accurate. Wait until the endo is done and then go gluten free that day.

Yeah, I realized that was probably not a good idea. What if I tried going gluten-free for 3 days to see how it goes, and then start eating gluten again until the procedures. That way I would be off for 3 days and back on for 10 days. Would that be ok?

[ravenwoodglass]

Yeah, I realized that was probably not a good idea. What if I tried going gluten-free for 3 days to see how it goes, and then start eating gluten again until the procedures. That way I would be off for 3 days and back on for 10 days. Would that be ok?

I would just stay with the gluten. It is not a long time to go and you can use the time to 'study' up and prepare the house, go through your toiletries etc. There is a chance if you eliminate it even for just a couple days that your reaction when you add it back will be worse than it is now. IMHO you should just hang in there.

[sa1937]

Ali, I would agree with ravenwoodglass. Stay on gluten until the bitter end. My endo/biopsy was on April 9 and I continued eating gluten through April 8 (unpleasant as it was and oh so tempting to cut it off a bit early). I have no idea what the biopsy will show, but yesterday (only 3 days gluten free), I felt amazingly well. That has continued through today.

At this point in time for me, I don't give a squat what the biopsy shows. I only know I was desperate to feel better and actually had very low expectations for feeling so much better so soon. I was hoping I'd feel better in two to three weeks. Crossing my fingers that it stays that way. I know this is a strange disease and everyone reacts so differently.

Wishing you well!!!

[ali11]

Ok, I had my endoscopy/colonoscopy yesterday. I took your advice and kept eating gluten all the way through. The doctor who did the procedures has never seen me, but he said they took a lot of biopsies. I have to wait until May 3rd to follow up with my doctor though (who has also never seen me, just his PA) and get the results. The nurse said they found some gastritis and that my colon was spasming, which is probably why I remember being in a lot of pain at one point during the colonoscopy, but that's all she saw on the report. I told her I was just going to start going gluten-free now, and she said that's a good idea. When she was putting the IV in before the procedures, the tourniquet turned my arm really red and she asked if I was being tested for celiac disease, because I "fit the bill". So I guess I just have to wait the 9 days to see what the doctor says, but at the very least I think I must be gluten intolerant if I have bad stomach pains after eating gluten and no stomach pains when I don't.

[skates79]

Ok, I had my endoscopy/colonoscopy yesterday. I took your advice and kept eating gluten all the way through. The doctor who did the procedures has never seen me, but he said they took a lot of biopsies. I have to wait until May 3rd to follow up with my doctor though (who has also never seen me, just his PA) and get the results. The nurse said they found some gastritis and that my colon was spasming, which is probably why I remember being in a lot of pain at one point during the colonoscopy, but that's all she saw on the report. I told her I was just going to start going gluten-free now, and she said that's a good idea. When she was putting the IV in before the procedures, the tourniquet turned my arm really red and she asked if I was being tested for celiac disease, because I "fit the bill". So I guess I just have to wait the 9 days to see what the doctor says, but at the very least I think I must be gluten intolerant if I have bad stomach pains after eating gluten and no stomach pains when I don't.

ali11 - i'm so glad you posted! your symptoms are remarkably similar to mine. i've been sick on and off for years - am 30 now, had my first colonoscopy at 20 with no findings. since september 2009, i've been nauseous everyday, i lost 16lbs., i'm extremely fatigued, and also have been dealing with horrible wrist and arm pain that was diagnosed as tendinitis. your post and everyone's helpful feedback made me go back to my primary and demand further celiac testing, even though my results came back negative. thank you so much!

[ali11]

ali11 - i'm so glad you posted! your symptoms are remarkably similar to mine. i've been sick on and off for years - am 30 now, had my first colonoscopy at 20 with no findings. since september 2009, i've been nauseous everyday, i lost 16lbs., i'm extremely fatigued, and also have been dealing with horrible wrist and arm pain that was diagnosed as tendinitis. your post and everyone's helpful feedback made me go back to my primary and demand further celiac testing, even though my results came back negative. thank you so much!

I'm glad I could help Even if you're celiac tests came back negative, you still might be gluten intolerant. That's what I figure for myself, so I started going off gluten while I'm waiting for the biopsy results and I'm already noticing some improvements. I really hope you start feeling better soon!