10 Months Gf -- And I Still Have Symptoms

[celiac3270]

Hi everyone,

I think I've asked this before when it weeks turned into months with minimal progress. My symptoms included stomach pains (due to gas, the doctor said), vomiting, nausea, bloating, gas, low weight, and loose stools. I was diagnosed with celiac on February 17th through after numerous tests: bone age, bloodwork (allergies, celiac), sonogram, etc. I was told to remain on gluten until my endoscopy, which was maybe 7-10 days later--I tested positive again. Anyway, I was on the gluten-free diet by the end of February.

I should probably explain the progression in my symptoms over the past ten months. Prior to diagnosis, I had a constantly bloated belly and gas. I had occasional diarrhea, but it wasn't severe or persistent. I was 5' 67-72 pounds (I would lose weight when I got sick). Every 2-3 weeks, I would get stomach pains, which I dealt with by curling up into the fetal position. Later I started using a heating pad, which also helped greatly. After numerous hours of the stomach cramping, I would vomit. A couple hours later I'd vomit again, and perhaps a third time after that. After 10-24 hours, I would feel better.

The gluten-free diet helped with my minor problems. After a few months, loose stools were rare. My weight slowly increased, as did my height (I'm now nearly 5', 4" and 82-85 lbs.. My stomach was no longer constantly distended, but I still had the gas, vomiting, and stomach pains. Surprisingly, over the past ten months, the stomach pains and vomiting have become more frequent. Midway through, I was getting sick every 1-2 weeks, then by about the 8th month it became every 7-10 days...and now, over the past week or two, I've been getting sick every 3-5 days...most recently, for example, I was sick on the 21st, then the night of the 24th into Christmas, and now today, the 28th.

On the positive side, the sickness is less debilitating. I can still do homework hunched on my bed, whereas I wouldn't have been able to 10 months ago. It does not take 24 hours of stomach pains and vomiting to get better, but rather, I start to feel queasy, and then 2-4 hours later I get the full-fledged symptoms, which then take maybe 8 hours and some vomiting to go away.

Anyway, it seems like longer than ten months. I've been to a GI who diagnosed me, but within a few weeks, knew less about celiac than I did. I'm now going to a good celiac dr., but he doesn't know what else we can do besides wait it out and maybe it'll get better. He's also thinking of trying a medication: Domperidone, but only to alleviate symptoms slightly, not eliminate them. This doctor also did a biopsy 1-2 months ago to make sure I was healing. My villi have completely grown back but my stomach is still red and raw from the damage inflicted prior to the gluten-free diet. I am also seeing a homeopathic dr. and we are trying a third remedy to see if it works.

Basically, I would like to hear from people who have taken a long time to feel totally better--either people who are currently in a similar situation or those who took 10 months to over a year to get better...I need a success story to encourage and reassure me or someone to commiserate with.

-celiac3270

P.S. I should mention that one suspected problem is my digestion. When I vomited today, I hadn't had any lunch and it was 3:30...that must have been my breakfast, which I ate at 8 AM....the fact that after 7 1/2 hours, my food hasn't digested makes both me and my doctor suspect that my body isn't digesting food fast enough--I don't know if it helps to include this or not.

[Guest jhmom]

celiac3270, I am so sorry to hear you are not doing much better. I am not sure what to say or recommend as I am in the same position as you. Have your doctors mentioned Crohns to you or tested you for this and if so how long ago? I know with my problems my GI doc thinks its in my small intestines because of the gas and pain that I describe to him and as you know it's hard to get in there to "see" what's going on and impossible to take a biopsy (to my knowledge). However there is one test that is available now called a "capusle endoscopy" you swallow a pill with a tiny camera in it and it goes through your GI tract taking pictures every few seconds. Here in GA I think you have to have some serious problems for insurance companies to approve it.... figures and I was told the capusule alone cost $500.

P.S. I should mention that one suspected problem is my digestion. When I vomited today, I hadn't had any lunch and it was 3:30...that must have been my breakfast, which I ate at 8 AM....the fact that after 7 1/2 hours, my food hasn't digested makes both me and my doctor suspect that my body isn't digesting food fast enough--I don't know if it helps to include this or not

In regards to this have your doctor mentioned doing a "Gastric Emptying Scan"? This was the first test that my doctor ordered for me because of the abdominal pain and nausea. My food digests normal however this was before my Celiac dx and I ate oatmeal for the testing and had to get up during the test to use the bathroom

Hang in there and keep your doctors well informed of symptoms, food diary, etc. I do hope they figure it out soon! I know it's miserable to feel bad and constantly have abdominal pain, nausea, etc. I am still waiting to find out from my docs too, I did find out that my 2 GI docs both suspect Crohn's. I possibly have Lupus and that could be my entire problem or the doc said it could be overlapping (Crohns and Lupus).

Take care ((((((hugs)))))))

[bmorrow]

celiac3270,

I am sorry that you are not doing any better. I have been gluten-free since March 2004, and have seen some improvement, but not enough. I am still having chronic diarreha and nausea. I can't vomit, because I had a procedure for Gerd called a Nissen Fundo. that wrapped my stomach around my esphogahus. My stomach bloats until the gas moves through which usually takes about four to five hours after I start getting sick. I can make it to work approximately 3 to 4 days a week.

My GI doctor has referred to me a GI specialist in Dallas to try to figure out how to control the diarreha. I have to do something, or I will end up having to quit my job, or lose it.

I know that it is very frustrating to try to do everything right and still be sick. Don't give up and try to think positive. I will let you know how my appointment goes with this doctor. It is scheduled for January 31st at Baylor Medical Center. I am supposed to be there for five days.

[Carriefaith]

I totally understand how you feel, and I was actually going to post a topic like this...

I started the gluten free diet on March 3rd, 2004 (about 2 weeks after you) and I'm still not better. I was diagnosed in March after a positive biopsy and + blood test. Like you, I was extremely sick before dianosis. I was underweight, diarrhea, excessive bloating and gas, stomache pain, joint pain (I was 22 at the time and felt like an old lady), my hair was starting to fall out more than usual, I was extremely tired all the time, and no energy. I was a mess.

I started the diet and was so excited to get better. But by June/July I hadn't seen much progress. My hair stopped falling out, my joints felt a little better, and I gained about 5 pounds, but I still had diarrhea, gas, bloating, fatigue, and lack of energy. It got to the point where I couldn't play on my soccer team for awhile because I felt like I was going to pass out during games. I was told I probabaly had IBS by my GI doc and was put on Modulon (an IBS med). The Modulon helped for about 2 months. I was never "better" but I had diarrhea less often and seemed to have more energy.

Then in the middle of September the Modulon stopped working and I started getting diarrhea and stomach pain almost every day and I started loosing energy and getting tired all the time. And then for about a month, I started feeling sick to my stomach almost every day. It would just hit me all of the sudden out of no where. I would feel like I would vomit, then I would take Graval and wait it out, but I would eventually just end up having severe diarrhea.

I've recently had a colonoscopy and they found nothing serious. My GI doc. says that my intestines are still irritated because of the gluten damage and that they are sensitive to food, resulting in IBS (I haven't had a follow-up endoscopy to see if the villi are healing). Now almost 10 months gluten free, I get severe diarrhea about 3 times a week (which is better than almost every day), I have some bloating and gas, I still don't have my energy back. The vomiting feeling is gone for now.

I really don't know what to think about all this. Maybe it just takes some people longer to feel better than others? I sure hope that these symptoms aren't permanant. I too would like to hear from someone who took a long time to feel better.

I hope that you start feeling better soon. I'm sorry to hear that you are still getting sick and that it's getting worse. Keep us posted on how you're feeling.

-Carrie

[lpowmacback]

I haven't yet been officially diagnosed w/ celiac disease, but my doctor highly suspects it... and I am certainly a "newbie," but I imagine that prior to anyone being diagosed and prior to going gluten free, the damage caused by years and years of eating gluten would probably take a long long time to heal!

[pturse]

I was diagnosed in early 2003 via biopsy. I guess you can say I have been strictly following the diet since Jan. 04. My symptoms before were just diarreah which I didn't think was odd because I have had it since I was born. I was pretty much used to it. The other symptom that was more annoying was the gas and bloating. No pain really.

Since being on the diet I now have pain, gas, bloating and constant diarreah. I have never had a solid bm. This diet is frustrating in that I was hoping to feel some what better. I gained 10 pounds, not that I needed to either. My iron levels are up but I am also eating more fish & iron rich foods then I did a year ago.

I am becoming very discouraged. I told my husband that I want to get another biospy in February to see if the villi have healed at all. If they haven't then I plan to go off the diet. I know that is going to cause an up roar on the board but I am frustrated and tired feeling sick. I feel worse being ON the diet then I did when I didn't know I had celiacs. If I could turn back time I would never have had the biopsy. I was a happier person before I knew I had it.

[celiac3270]

Thank you for all the replies I've received thus far. It's nice to know you're not the only one--that there are others who, if not with the same symptoms, have been on the diet just as long or longer than you and are having similar problems.

Stacie, I'm not sure if I've been tested for either Chrons or Lupus--my mother said she thought I had been tested for Chrons...I'll find out, though and I'll do a little research on both to see if they could match up with some of my problems. I will also research and look up the capsule endoscopy and the gastric emptying scan.

Bmorrow and medaka...no offense and I'm not wishing anything bad on anyone else, but it's nice to know you're not alone in this situation. My mother gets really concerned that it's taking this long, and I'd tell her that I remembered reading of a few people who aren't better either...I've been showing all the replies here to her, cause it gives both of us reassurance that I'm not totally abnormal.

Lpowmacback -- my dr. said that after 7 years of poisioning myself, possibly more, it can take awhile to get better. He made the analogy to a speeding train. Once you start the diet, it's like slamming on the brakes, but it still takes awhile for the train to stop. Like the stopping of the train, the symptoms and damage from celiac disease aren't corrected overnight. What surprises me, though, is how after only about 7 years undiagnosed, I can take this long and not be better, while someone who ate gluten w/ celiac for 20 years has his or her symptoms vanish in a few weeks.

Finally, pturse, similar to you, I've found that my situation has, in some respects, worsened on the diet. Although the pain might not be as harsh and my weight has gone up, I used to get sick every 2-3 weeks and now I'm sick 1-2 TIMES A WEEK!

Thanks to everyone who has replied thus far and I'd love to read some more posts of this sort, or even some with happy endings

-celiac3270

[cmom]

Wanted to let you know that since committing to a gluten-free diet, I am SO much better. Before the diarrhea was so bad that many times I could not leave my house. However, I still have attacks of the cramping and diarrhea (Had a horrific experience in WalMart a couple of weeks ago) at times but not as often. Also, I have gained weight and exercise but can't seem to lose any pounds. Have the bloated stomach also. So I also have some negatives. Still wouldn't be able to hold down certain jobs such as assembly line worker, cashier, etc. where I wouldn't be able to go to the bathroom when I needed to.

[Carriefaith]

No offense taken, I actually feel better knowing that I'm not alone as well. I try not to get discouraged but it's hard when I'm not feeling better. It seems to me that my gastro-intestinal track does not like any type of food. As soon as the food goes in, it bothers me until it's out. Today was a bad day... I have been feeling sick all day (diarrhea, gas, bloating, nauseated) and I just know tommorrow will be bad too

What surprises me, though, is how after only about 7 years undiagnosed, I can take this long and not be better, while someone who ate gluten w/ celiac for 20 years has his or her symptoms vanish in a few weeks.

Celiac Disease and the gluten-free diet seems to affect everyone differently. I've read that some people get better in several weeks and I've read that it takes some people up to 1 - 2 years! And then there are those with silent celiac that get no symptoms and don't have to wait at all to feel better (if the disease is detected in the first place). I guess since everyone is different, our bodies will respond differently to the disease and to the diet. Maybe we are the unfortunate few that have to wait awhile (ok a long while...) to feel better. I just hope we don't have to wait much longer... and I hope we do get better.

I just try and stay happy hoping that someday I won't have to deal with these symptoms any longer.

[cdford]

and some of us see saw for a while. I have been gluten-free for a year and a half now. I go through periods of time when I am seeing progress, then hit a plateau for a while when it seems as though I am never going to get better. A couple of times I fell into a temporary "hell" and the only explanation the doctors could give me was that I must have gotten into something hidden in another food.

One note is that my endocrinologist says that once your body begins to know what it is like to be gluten-free it will often react far more strongly to even a tiny amount of gluten. He says it is as though the gut wants to yell at you for even thinking that it wouldn't catch on. He assures me that this is a positive thing in that my body is "helping me" know what it will handle. I must admit that there have been a couple of times when I almost lost my temper at him for a comment like that. It sure doesn't feel like "help".

To the one of you who is struggling to work: I finally gave in a went out on disability several years ago before we had any inkling that it was "just celiac". By that time, so much damage had been done to my system that I will never work again. Hang in there as long as you can. I wonder sometimes if I had know then what I know now if maybe I could have prevented so much of the damage.

Donna

[luvs2eat]

As soon as I was diagnosed, via blood test, I became obsessive about my diet... and was COMPLETELY wheat/gluten free... and it still took a whole year before I decided things were as normal as they were gonna get. No more gas, or diarrhea, unless I've eaten something I shouldn't have.

[KaitiUSA]

Definately don't feel alone on this. I have been gluten free since I was diagnosed around January of 2004. I have been seeing improvement but then I will have really rough days. The major thing is after I eat I get nausea(not to the point of vomiting but to the point of making your life miserable) and then it will go away when I have enzymes after about 5 minutes...until I eat again(which I love to do) Once your body recovers from the damage of the small intestine things will get even better for you. Your already seeing improvement which is awesome. I have had to cancel plans at last minute sometimes and I don't like to eat before I know I have to go somewhere because I of course don't want to be miserable. So just know your not alone in this and you will def. get better. Have you tried enzymes? They really help...and probiotics do as well. God Bless

Kaiti

[burdee]

I agree about using digestive enzymes and probiotics. However, watch out for malt diastase (barley source) in enzymes. I took enzymes recommended by a naturopath for almost 18 months, believing they helped my celiac disease related indigestion, before I noticed that gluten ingredient. Now that I have eliminated that last gluten source AND found a safe enzyme capsule, I am doing SOOOO much better. No more bloating or celiac disease related constipation (which I had instead of diarrhea) or that awful 'bits of broken glass stuck in my intestines' cramping pain. YAY!!! However, if I get contaminated, I get all those symptoms back for 5-7 days. I've also noticed that even a tiny bit of contamination can give me a more severe reaction than when I was consuming gluten regularly. But it took me almost 8-1/2 months to begin to feel normal (whatever that is ) again. I also have antibody/intolerance reactions to casein and soy and can't tolerate any sorbitol related sweetners. So I would recommend to those still suffering to hang in there, get some safe digestive enzymes and probiotics, gluten 'sleuth' obsessively and consider other food intolerances which may cause symptoms.

BURDEE

[celiac3270]

Thank you, once again, everyone for replying . I posted this topic in part for proof for my mother that I'm not the only one. I think knowing that there are others in the same situation is what gives both of us hope

I tried one enzyme, Lipram Cr-10, and it is gluten-free, but it still made me nauseaous. Whenever I took it, I'd feel nauseaous 10-15 minutes later and the nausea would stay for numerous hours.

I'll probably try some different enzymes, etc. once school settles down--I'm applying out for high school this year, and in NYC it's REALLY competitive--lots of interviews, lengthy applications, etc.

Thanks again to everyone ,

celiac3270

P.S. 6+ days without symptoms!....it had been getting pretty bad--getting sick every 3-5 days. I'll keep my fingers crossed.......

[lovegrov]

deleted by poster

[KaitiUSA]

I am sorry it offended you. It was not meant to do that or get anybody mad. This is America though don't judge people by who they vote for and get mad about it. I'm not even old enough to vote I'm 17 years old but I was just showing my support for him..I happen to like Bush. Have a good day tho and sorry if it offended anybody

[darlindeb25]

i love your name kaiti--it's no one's business but yours and i agree with you, i like bush too, so much better then the alternative, we bush fans stick together --may not have anything to do with celiacs, but neither does darlindeb or lovegrov--this is a free country--you can have any name you want and any opinion too--keep your name and keep posting--dont let anyone upset you--we are all here for each other and to give support whenever we can--deb

[lovegrov]

deleted by the poster

[YankeeDB]

Back to the topic: celiac3270, I assume you've been tested for pancreatic insufficiency and other food intolerances?

[celiac3270]

i love your name kaiti--it's no one's business but yours and i agree with you, i like bush too, so much better then the alternative, we bush fans stick together  --may not have anything to do with celiacs, but neither does darlindeb or lovegrov--this is a free country--you can have any name you want and any opinion too--keep your name and keep posting--dont let anyone upset you--we are all here for each other and to give support whenever we can--deb

I concur...btw, I'm also a Bush fan...Republican New Yorker here

Back to the topic: celiac3270, I assume you've been tested for pancreatic insufficiency and other food intolerances?

Yep...everything is normal--villi grown back and all--it's just the red stomach. I did an experiment yesterday--ate an orange (acid) and I started getting stomach pains. They went away without vomiting or anything, but it told me that the acid still isn't okay. I have been able to add it in small amounts (a little bit of ketchup once a day, etc.). But yes, been tested for pancreatic issues, other allergies/intolerances, etc.

[mela14]

You are not alone. I have been having a rough time with all this too. I amy be better for a few days and then suddenly something sets me off and I'm sick for a week. The nausea, stomach pain and gas are always there at different levels. I've finally gotten better with the diahrea.

I have been working with a dietician but it hasn't really helped as she is NOT a food allergy speicalist or knowlegeable enough in gluten. I think I might cancel my appointment with her this week. It gets expensive and I'ld rather be working with someone who has more experience in this field.

One thing that did help...was keeping a food diary. I was able to pinpoint things a lot better. Some things that might have been over looked were very clear to me in black and white. I've uncovered other food intolerances. Maybe that's the case with you too.

Hang in there better days have to be coming....especially when you are doing all that you can.