Progress?

[Mama Melissa]

Hey Guys,

Hope you are all well:)Just curious to know how long you have been on the gluten free diet??And where you are now in terms of Health??Symptoms??Other intolerances????Eating out experiences????Trying to figure this all out is soo frusterating i find a couple of good days thinking im in the clear then i will have a crappy day next,but the stomach issues and bowel issues have resolved 90%, i find its more neurological headaches on occasion,weak bones and extreme tiredness it comes in waves but i know i havent consumed gluten my whole house is gluten free and havent eaten out either, im thinking other intolerances. I have not had vitamin panels yet i do know im not anemic.Btw friday will make 3 months on the gluten free diet im soo proud:)Cant wait to hear from my fellow celiacs:)

[cO-ol]

I've been a month and I have a lot of good days and bad days. On Sunday I had to work and I was MISERABLE and moody as all get out. A lot of my coworkers weren't happy-go-lucky either, but I'd eaten a lot of chocolate with soy in it the night before, and I blame that. Monday it was more mood swings but I was overall better. I ate nothing but veggies and fruit. Today I have some heartburn, but no coughing after eating. I'm not pissed off at the world today though. I also am off, which probably helps. My period is late though. I should have it by now, but nope. My periods were starting to get pretty irregular though.

I think overall I'm getting better? I have more days of levelheadedness (still a little absent-minded, but less getting irrationally emotional). I rarely cough after eating. I have much fewer days where my belly feels so "gross" that anything touching it feels disgusting (hopefully one day I can wear normal pants without that "gross" feeling! I'm stuck with maternity pants till then.). I'm having a hard time getting the hang of it because I don't like cooking that much (and I especially don't want to cook on a day my appetite is wacky). But I'm working on it.

[diane64]

I have been gluten free since July 7, 2010. I felt better within a few weeks and now feel better than I have in years. I have more energy, am happier and the physical symptoms are gone( loose stools, joint pain, fatigue).

This being said, I don't think that I was as sick as many of the others I have read about on this board. I went to the dr within a few months of my "bathroom" issues and he tested me for celiac right away. I don't know if this all helped with my healing/feeling better sooner or not.

I mostly eat only what I cook. If I go to someone's house, I bring a dish to pass that I have taken a portion of (before anyone else) and that is all I eat. I don't trust others to understand the whole cross contamination thing. I have eaten out a few places, but only those who have a gluten-free menu. I talk to the manager first and make sure that everyone involved in my meal understands.

I don't have any other intolerances that I know of. Elimating gluten seems to have done the trick.

Good luck with the new diet. It is difficult, but it is worth it!

Diane

Hey Guys,

Hope you are all well:)Just curious to know how long you have been on the gluten free diet??And where you are now in terms of Health??Symptoms??Other intolerances????Eating out experiences????Trying to figure this all out is soo frusterating i find a couple of good days thinking im in the clear then i will have a crappy day next,but the stomach issues and bowel issues have resolved 90%, i find its more neurological headaches on occasion,weak bones and extreme tiredness it comes in waves but i know i havent consumed gluten my whole house is gluten free and havent eaten out either, im thinking other intolerances. I have not had vitamin panels yet i do know im not anemic.Btw friday will make 3 months on the gluten free diet im soo proud:)Cant wait to hear from my fellow celiacs:)

[ravenwoodglass]

I felt alot better tummy wise pretty quickly and my migraines stopped within the first week. By the six month mark the difference was just short of a miracle. I could walk again unaided and my joint and muscle pain had resolved for the most part. It did take a while for me to realize that I had an issue with soy and once I eliminated that my joint pain was totally gone, unless I get glutened or soyed. I am eight years into the diet and it did take much longer for my neuro issues to fully resolve to the point where ataxia was fully resolved and I could do stuff like remembering what I would read.

[Emilushka]

Gluten-free since 9/10/2010. My biggest problems were reflux and stomach-related symptoms (with some massive diarrhea, but I'd learned to schedule around it so what bothered me most was the pain). I am doing SO MUCH BETTER with those.

Occasionally I get some cross-contamination or accidental glutening, but I've learned that if I catch it at the time, I can stop eating, drink a bunch of water, and just be ready to ride it out. Understanding what's going on makes it all a lot easier to tolerate. Before I was petrified because I couldn't explain my symptoms and couldn't make them go away.

I cook almost everything I eat. I do go out sometimes and I do eat a lot of Lara bars (because I have to pack lunches without access to refrigerators for the most part). But mostly I cook. I cook a lot. I am starting to get sick of cooking sometimes, but a girl's gotta eat!

[pelsteen]

I have had

--increasing needs for sleep for a decade up to 18 hours in bed June-July 2010

--increasingly nasty abdominal cramping

--Restless legs at night, awake and asleep, for five years

--periodic diarrhea, probably after high gluten intake, for two decades and constant "borderline diarrhea" for at least five years

--Low iron levels for a decade

--Lactose intolerant for a quarter century

--Mostly sick for most of the winter for a decade, many doctor visits for sinus and ear infections, bronchitis, and pneumonia for two decades until taking Flonase, Singulair, and loratadine, and eliminating corn three years ago

On July 31, after two months of horrible cramping, restless legs, and needing 18 hours in bed to get inadequate sleep, I cried out to God for help, asking why life was worth living in these circumstances.

On Sunday August 1, God told me that I had Celiac disease. On Tuesday 8/3 my doctor said "maybe, go back on gluten for a blood test which misses 20%" On 8/17, I had my last intentional gluten and got the blood test. On 8/19, doc's message: test was negative, continue eating gluten-free it it helps

The first two weeks of August, I ate lots of wheat, but only in the morning, and spent 12.5 hours in bed each night, about half cramping and half really sleeping, but still spent my days in a fog. From August 17, off gluten, through mid September, I spent 16 hours in bed and felt more clear-headed when I was up. One month off gluten, I started sleeping soundly for at least half the night, and was down to 14 hours in bed, but still struggled to get back to sleep when awakened. Two months off gluten, it became easier to get back to sleep and I felt a "spell" which was pulling me back to sleep.

Three months off gluten, I began to really relax in bed most of the time and get awakened much less. I also started to feel tremendous energy and more mental clarity than I have had in at least 20 years! During these months, I spent lots of time in "fragmented sleep" during which I would repeatedly fall asleep only to awaken 15-25 minutes later.

From August through November, I had lots of narcoleptic symptoms ranging from fragmented sleep,sleep attacks, and dreaming when half-asleep, to sleep paralysis. My docs and I thought I had narcolepsy, but all of these have gradually disappeared.

Recently, four months off gluten, I finally started sleeping with almost no fragmented sleep.

[GFinDC]

gluten-free 3 years.

Food intolerances: gluten, dairy, coffee, tea, carrots, garbanzo beans, soy, turnips, tomatoes, peppers, potatoes, (nightshades).

I do fine if I avoid most processed foods. Once in a while I try something a little different and oops up tho. My latest blunder was eating some FFL gluten-free bread that has carrot fiber in it. Been quite a while since I tried carrot so thot it would be worth a shot. Nope!

I rarely eat out.

I had big problems with sleep, as in not being able to get much of it over the summer. Stopped eating Luigi's Italian Ices and got past that. I am pretty sure it is the food colorings in them that got me.

I had some pistachios from Trader Joe's recently and the did a number on me. Not sure why though.

Tried some Chebe bread mix with corn meal and got sick too. Not sure why again.

For the most part I do pretty ok though. Symptoms are much better than when I started the gluten-free diet. I am not in constant pain now, and have a lot better time mentally. gluten-free definitely makes a huge positive difference for me.

[plumbago]

Gluten free since May 2010. Celiac symptoms were not nearly as bad as others' I've read on here. Endoscopy revealed moderate villi damage (late April).

Used to have bad joint pain in my bunions, but it's improved a bit. PMS symptoms used to be very bad too, but slowly improving every month. I still get emotional and react intensely sometimes. I am not so sure it's always a matter of giving up gluten to quickly resolve a lot of emotional issues. I think for me, it's a matter of also getting into good habits and figuring things out. I do eat out sometimes, and feel like it's been ok. In restaurants where I get a feeling that they don't understand the whole concept, I just leave. Family is not that understanding - living with one family member for 2 weeks was hard: would not go gluten-free in the kitchen, and that upset me a lot, and I had to do a lot of cleaning.

Otherwise, I try to stay healthy by doing various things like using the nety pot (and washing it!) every day.

There is still a lot that I have not been able to square in my understanding. For instance, some say that my lowered readings on my blood test mean that I am slowly improving. Others say that no, if you are still in the low abnormal range, doesn't matter that they're low scores - that's like being a little bit pregnant. So I'm thinking of making an appointment at U of Maryland to get a handle on the blood tests. (My blood tests, conducted in October, as I say, revealed two normal readings, two low abnormal readings.)

There is still a lot of other stuff I don't understand, like why some people react instantly and/or very very strongly, whereas I will get a cramp, sometimes mild, sometimes bad, after ingesting gluten. And, how do we get rid of gluten? Off our hands from lotion for instance? Some say just get the crumbs up. But what if there was a liquid form of gluten on the counter? Lots of potentially annoying questions (at least I feel annoying constantly constantly asking them), but I feel like there's some baseline of understanding that I haven't gotten yet.

But overall, I do feel better. Much less gas. And no D in the a.m. like before (b/c I ate wheat pancakes among other reasons). I always ate lots of veggies and pretty good meat before, and even prior to diagnosis, I was not that into bread. But I do miss it, especially the homemade kind with the thick fresh crusts.

[Mama Melissa]

wow everyone thank you for taking your time to reply it means alot to me:)I see everyone has totally different experiences with this.I imagine that with time it has to improve i do see a big improvement in 3 months but when i have bads days its horrible im hoping those bad days nearly dissapear with more time

[plumbago]

wow everyone thank you for taking your time to reply it means alot to me:)I see everyone has totally different experiences with this.I imagine that with time it has to improve i do see a big improvement in 3 months but when i have bads days its horrible im hoping those bad days nearly dissapear with more time

Yes, at three months, I was still experiencing some symptoms. It will abate, provided you stay gluten-free.

[Mama Melissa]

plumbago thank you soo much i am 100% gluten free but i do not limit myself i eat anything that is gluten free so minimaly proccessed stuff.

I live by if it isnt in the igriedients and i know for sure then i eat it i guess sometimes there chances of cc for things i eat like fritos,tortilla chips,sodas etc but i need to have a different array of snacks hehe. I also successfully ate the chilli w cheese and baked potato at wendys yest i did go in and explain to them not to cut my potato and change there gloves i had a panic attack before i ate it because i was soo nervous,but next morning im fine with no ill effects i do realise my belly is starting to tolerate more:) I feel i have to live life and enjoy so i will always take my precautions but with a fast paced life i refuse to give up on the occasional eating out:)Thanx for giving me hope!