When Should Iiii Start Improving?

[HelpinOhio]

I started on a gluten free diet about 2 days ago, after eating gluten while possibly having Celiac Disease for 7 years straight, if not my entire life of 18 years. I was having the mainly auto-immune symptoms similar to Lupus rather then D or stomach problems (other then discomfort and constipation).

When should I start improving and feeling better?

The 1st day of going gluten free my stomach felt different, I cant pin what it was but I wouldnt say it felt better or worse. You can check my other threads to see my whole story. I took the blood test for Celiac Disease 3 times and had the upper endoscopy done recently, all which came back negative, but my mom has Celiac Disease and I had a mystery illness that ruined my life for the past 7 years, the past 2 years Ive barely been able to do anything. Ive been tested many many times over the years for many many different things and they never found anything really wrong with me.

I guess Im just a little worried because Ive heard some people start feeling better after the 1st day, but then again Ive heard other people who didnt start feeling better for weeks or months, then they really started to notice that they were improving. Any help is appreciated, thanks.

[flourgirl]

It's just like you've said, and read here from other Celiac people.....some feel better right away, others take weeks, months, years to find relief. I think it depends largely on the amount of damage, strength of sensitivity, other food intolerances and other complications (other immune disorders for example). I hope you are one who feels relief very quickly! Good luck!

[sylviaann]

I started on a gluten free diet about 2 days ago, after eating gluten while possibly having Celiac Disease for 7 years straight, if not my entire life of 18 years. I was having the mainly auto-immune symptoms similar to Lupus rather then D or stomach problems (other then discomfort and constipation).

When should I start improving and feeling better?

The 1st day of going gluten free my stomach felt different, I cant pin what it was but I wouldnt say it felt better or worse. You can check my other threads to see my whole story. I took the blood test for Celiac Disease 3 times and had the upper endoscopy done recently, all which came back negative, but my mom has Celiac Disease and I had a mystery illness that ruined my life for the past 7 years, the past 2 years Ive barely been able to do anything. Ive been tested many many times over the years for many many different things and they never found anything really wrong with me.

I guess Im just a little worried because Ive heard some people start feeling better after the 1st day, but then again Ive heard other people who didnt start feeling better for weeks or months, then they really started to notice that they were improving. Any help is appreciated, thanks.

I took the blood tests twice (nine years apart) and was scoped once (1999) and I came back negative as well. My symptoms (myoclonus, weight loss, iron deficiency anemia and high autoimmune thyroid #'s) and and family history of IBD made me a high risk candidate. My doctor advised me that some Celiacs will have an IGA deficiency, which repeatedly causes their blood lab tests to return Negative results.

I have been gluten free since last October but made many unintentional mistakes during the learning curve. Your learning curve for totally eliminating gluten will be six months on the average. I am still finding food and cosmetic items in my diet that are cross-contaminated, which I previously thought were gluten-free. My mysterious illness was myoclonus (limb movement and twitching at sleep onset) which caused me immense suffering and severe sleep deprivation for 2.5 years. I will jerk and twitch when trying to sleep if I get glutened. I had my first normal night (I slept without twitches) last week!

My Celiac Specialist advised me me that it can take up to a year (possible two years) for your stomach to heal depending on your age and the extent of the villi damage.

[Leiana]

I took the blood tests twice (nine years apart) and was scoped once (1999) and I came back negative as well. My symptoms (myoclonus, weight loss, iron deficiency anemia and high autoimmune thyroid #'s) and and family history of IBD made me a high risk candidate. My doctor advised me that some Celiacs will have an IGA deficiency, which repeatedly causes their blood lab tests to return Negative results.

I have been gluten free since last October but made many unintentional mistakes during the learning curve. Your learning curve for totally eliminating gluten will be six months on the average. I am still finding food and cosmetic items in my diet that are cross-contaminated, which I previously thought were gluten-free. My mysterious illness was myoclonus (limb movement and twitching at sleep onset) which caused me immense suffering and severe sleep deprivation for 2.5 years. I will jerk and twitch when trying to sleep if I get glutened. I had my first normal night (I slept without twitches) last week!

My Celiac Specialist advised me me that it can take up to a year (possible two years) for your stomach to heal depending on your age and the extent of the villi damage.

wow ohio i was going to ask the same thing. been gluten free (i think) for about 3 weeks now. i do feel alot better and have been able to add foods i have not eaten in years like gluten free pizza!!!!!!! i would like to know when the stomach and intestines start to heal and how do you know when they are ok. i lost alot of weight and was told it is a malabsorption problem in the stomach and intestines. would digestive emzymes help with this? need to gain about 30-40 ilbs. is it ever gonna happen??? look like a skelaton. sylviaann you lost weight too....did you gain it back? and what is a celiac specialist? is that a gastro dr? any ideas anyone? it is getting scary cause i can eat and eat and gain nothing. ......trying to learn and understand....i know alot of questions. just trying to feel better

[FMcGee]

I was also about to ask the same question here! It's been two weeks. I've been getting terrible migraines and feeling pretty bad a lot of the time. I'm constantly thirsty. I want to get better so desperately, but I'm still not feeling good.

Leiana - I think Ensure is gluten-free (another friend who may or may not be celiac told me she drinks it). Might that help? Maybe it would be easier to absorb for you than food right now?

[sylviaann]

wow ohio i was going to ask the same thing. been gluten free (i think) for about 3 weeks now. i do feel alot better and have been able to add foods i have not eaten in years like gluten free pizza!!!!!!! i would like to know when the stomach and intestines start to heal and how do you know when they are ok. i lost alot of weight and was told it is a malabsorption problem in the stomach and intestines. would digestive emzymes help with this? need to gain about 30-40 ilbs. is it ever gonna happen??? look like a skelaton. sylviaann you lost weight too....did you gain it back? and what is a celiac specialist? is that a gastro dr? any ideas anyone? it is getting scary cause i can eat and eat and gain nothing. ......trying to learn and understand....i know alot of questions. just trying to feel better

Hi there,

A Celiac Speciialist is a Board Certified Gastroenterologist (GI doctor) who has specilized in diagnosing and treating patients with Celiac Disease, gluten sensitivity, and gluten intolerance. There are a limited number of CS in the United States. My doctor is located in Atlanta and I was blessed to meet her eleven years ago.

I lost approximately 10 lbs. and have regained 2-3 lbs. Since you probably have damage to your stomach vill, it could take a year for your stomach to heal from the damage. I STOPPED drinking regular milk and milk products (i.e. ICE CREAM, CHEESE, SOUR CREAM) because I had lower GI symptoms and became lactose intolerant. This commonly occurs due to the stomach villi damage. I am now drinking Pacific brand Vanilla Rice Milk (it is gluten-free) and I take a lactose intolerant enzyme everyday (Digestive Advantage brand-you can purchase over the counter). I am staying away from regular milk products for a few more months (total of 10 months) and I will slowly re-test myself. You should also seek the advice of a good nutritionist who has real experience counseling Celiac Patients. You need supplementation with calcium, iron, B vitamins etc.. Adrenal fatigue is also common and an experienced doctor and nutriitionist should understand and help you with this.

Did your GI doctor order an ultrasound to check your panceas?? My doctor did and I was normal. The pancreas can be affected by Celiac Disease or other illness. You should ask for an ultrasound just to make sure..sometimes patients with an affected pancreas have to take pancreatic enzymes in order to digest their food properly.

Hope this helps you,

SylviaAnn

[sylviaann]

wow ohio i was going to ask the same thing. been gluten free (i think) for about 3 weeks now. i do feel alot better and have been able to add foods i have not eaten in years like gluten free pizza!!!!!!! i would like to know when the stomach and intestines start to heal and how do you know when they are ok. i lost alot of weight and was told it is a malabsorption problem in the stomach and intestines. would digestive emzymes help with this? need to gain about 30-40 ilbs. is it ever gonna happen??? look like a skelaton. sylviaann you lost weight too....did you gain it back? and what is a celiac specialist? is that a gastro dr? any ideas anyone? it is getting scary cause i can eat and eat and gain nothing. ......trying to learn and understand....i know alot of questions. just trying to feel better

FYI..Most Boost nutrional drinks are gluten-free EXCEPT the chocolate MALT. If you read the side of the bottle, make sure it reads gluten free ad lactose free.

Sylviaann