10 Months Gf -- And I Still Have Symptoms
Posted 28 December 2004 - 02:28 PM
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.
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.
Posted 28 December 2004 - 03:10 PM
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)))))))
Posted 28 December 2004 - 08:10 PM
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.
Posted 28 December 2004 - 08:45 PM
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.
Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004
Posted 29 December 2004 - 06:25 AM
Posted 29 December 2004 - 11:06 AM
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.
Posted 29 December 2004 - 12:33 PM
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
Posted 29 December 2004 - 07:54 PM
Posted 29 December 2004 - 09:07 PM
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.
Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004
Posted 30 December 2004 - 05:23 PM
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.
9 yrs gluten-free
...also DH, fibromyalgia, neuropathy, osteopenia, hypothyroid...
After almost 10 years, I am doing soooo much better!
Posted 05 January 2005 - 11:13 AM
Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!
Posted 05 January 2005 - 05:37 PM
Gluten-free since January 2004
Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"
"One Nation, Under God"
Feel free to email me anytime....email@example.com
Posted 05 January 2005 - 06:59 PM
Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.
Posted 05 January 2005 - 07:24 PM
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 ,
P.S. 6+ days without symptoms!....it had been getting pretty bad--getting sick every 3-5 days. I'll keep my fingers crossed.......
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