Success Stories

[aklap]

After Wendy's post, I thought I'd be nice to have a thread dedicated strictly to success stories. As I told Wendy, I think it very important to share our stories so that others can see that it is possible to feel better. That's really why I tried it. I saw others with the same symptoms and thought I'd give it a whirl!

So, anybody that has had success with the gluten free lifestyle - please share!!

OK - here's an abreviated version of my story. I can't remember the un-abridged version any more LOL!!!

In 2001 I had finally had enough of the heartburn/reflux/abdmoninal pain problems (that had been getting worse over the prev. year or 2) and went to the doctor. In that year, I tried a number of acid reducers and acid blockers, an upper GI series <burp - belch - yuck> and I was still not feeling any better.

I was stilling feeling ill, "hungover", abdominal pain, stomach that would grind, gurgle & glurp, some "D", losing weight at a fair clip (50 lbs in 1 - 1.5 years), buzzing feeling in my arms, "bee stings" all over my body. I demanded to be sent on to a Gastro doc. After doing scopes (both ways), he found nothing more than inflammation in my stomach (hmm imagine that) and a polyp in my colon. He did to the biopsys (per my request) for CD and found nothing. He dismissed my food journal. He said I have chronic reflux and to stay on my meds. Yet they had no answers as to why I felt half past dead all the time. I was literally wasting way in front of everyones eyes. I truly thought I was dying. I recently found out Peg (my wife) did too. She would cry in the shower most mornings - unbeknownst to me.

I didn't not like or accept that answers and continued my research on what my problem was. Not only was I researching my gastro/overall illness - I was researching my neuropathy. The neuropathy research lead me to board (Braintalk) and I found out about the neurological aspects of this thing called GLUTEN. I started seeing people with symptoms similar to mine. They were feeling better after removing this from their diet.

I started out removing the large offenders 1st. Breads, pizza, crackers, BEER I did start to see a difference. I would go back and forth between eating and not eating large gluten offenders - tracking how I felt. Trying to determine if this was all in my head. After returning from a badly needed trip from Jamaica I decided to try a gluten challenge (FWIW - I felt the best in Jamaica that I had in the prev. 1 - 1.5 years due to eat primarily GF). I lasted 5 days doing my gluten challenge. The heartburn was coming back, I was starting to feel the "bee stings" again, started feeling yucky.

It was at that point (May '03), I decided to give up on the idea of getting an offical dx and to go fully GF. This is when I started weeding out all the hidden forms of gluten. This was a frustrating time for myself and my wife (Peg). We would buy something and then find out it wasn't GF. The local Food Pantry got a lot gluten filled food the 1st 3 months. Thank God for the Safe & Forbidden ingredient lists and the GF food list!!!

I started to feel human again. I was able to slowly ween myself off of the acid reducer/blockers. Gone were my abdominal problems. Gone were some of my neuro problems (unfortunately my PN still remains). Gone was the 'hungover' feeling. During that 1.5 years of being sick - I had been to the doctors office more times than 10 years combined!

I can now eat tomato products, chocolate products (limited amounts), GF alcohol. All of these caused reflux/gastro issues. (I remember my 40th birthday - my BIL had gotten me a shot of Goldschlager. I took 1 sip and it burned ALL THE WAY down <ouch> - I told him I couldn't drink the rest of it).

So - there's my story and I'm stickin' to it I am glad I get to be GF!! I hope others will realize this as well.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[momma3love]

Hmmmm.....I don't have much of a story. Other than the fact that I had an idiot for a doctor, who never picked up on the fact that something was wrong with me. I finally went to a new doctor and she right off the bat said Celiac. I got tested, had the biopsy, and yup I have it. I have been GF since November and feel so much better, stomach/intestine wise! It will be nice to read other peoples' stories.
_________________
Hugs and healing thoughts to all,
Carrie

[mchess]

My story is kind of long. When I was just 22 yrs. old I had my first baby. I was young and healthy, so I thought. When he was 7 months old. I got diareah and I wasn't even sick!! It was new years eve night and I paid a baby sitter $30.00 for a babysitter for my son all night long. Before 11:00 pm It started, but I didn't make it to the restroom. I tried to hide the fact best i could and went home. $30.00 for a %%^itty night out!! Not to mention a #^%&itty year to go along with it. lol Anyway after that night It wouldn't stop. It lasted 7 months no control at all. Went down to a size 0 at 80 lbs. I had to move back in with my parents. ( I was a single mom). My parents helped me best the could. Taking me to doctor after doctor. No one could find what was wrong with me. Eventually it stopped. I met a nice man and got remarried. I was pregant again. I didn't have any problems while i was pregnant. I was thinking that all those months with uncontrollable diareah was behind me. After 2 baby was born she was 6 months old and it started all over again!!! I can't even begin to count how many days i was crying and depressed. Not one doctor could help me. back down to 80 lbs. I was told I had IBS and was told to deal with it. Deep down I knew it had to be something else cause I was so sick. Couldn't even keep water down. I am surprised I lived through all that!! 3 more babies after that. Each time I was pregant I had no problems, But right after the baby was born it would start all over again. By the time my last one was born I was having sharp pains on my right side and my right leg was numb and feeling really weird. I had already had a kidney stone and problems with my kidney. I had days where I couldn't urinate at all.
Finally in October of 2002 I went to a doctor who was willing to stick by me and find out what the heck was wrong with me. After several test and not finding anything he said I have one more test to try and if it is positive then you wont be able to eat any more wheat. I said i can't handle that! He said not more breads and stuff like that. And me being hearing imapaired thought he said SWEETS and when I finally heard him correctly I was like oh ok I can handle no wheat!!! Good Lord I didn't know the half of it!!! Well since I am here in this forum you know what the result of that test was. I had the biopsy too. I stayed on the diet for 8 months and quit. for like 7 months and the pain and stuff was so bad i had to get back on it. That is when I found you guys . I may not post that often but i am here every day reading post from people just like me. I am in the process of starting a support group for the people in my town. I called the newspaper to get an idea of just how mony people with celiac are right here at home. I should start getting phone calls in the next day or two. fingers crossed!! anyway thats my story and I thank you for listening . Sorry it was so long.

Melissa
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Melissa

[mchess]

I am so sorry I forgot to say how much better I am doing now. I feel so much better and now can't keep the weight off. lol I have to go join a gym or something!! The only problem I am still having is my right leg but it is not as bad anymore. the pain in my side is gone and I can urinate again. And no more direah. You'd think I would know how to spell that by now since I had it for so long , but I don't . sorry . I think people know what I am trying to say . LOL anyway I hope you all have a good day.

_________________
Melissa

[aklap]

[Maggie1956]

Well, I started life as a breast-fed baby, so there weren't any symptoms till Mum started to wean me onto cereals and such.
She has told me that I used to scream with stomach pain as a small baby.
As a child, I used to get severe cramping in the stomach. Mum & Dad just thought it was probably a tummy wog, and indeed, I would 'get over it' in time, only to have it recur.

The symtoms seemed to go away a bit as a teen, with the occassional cramps. But I never had any energy as a teen, and caught any bug that was going around as well, including scarlet fever. I also developed what I thought was psariasis (sp), which really got bad during my twenties.

I developed hypothyroidism a bit later and got what I think was glandular fever in my twenties as well.
My health really got bad after having shingles about six years ago. I developed chronic fatigue, fibromyalgia, anxiety/depression..etc...etc.

I finally got sick of being sick and saw a doctor. I asked if I could be tested for celiac disease, as I had a lot of the symptoms by them. That was in November 2004. The blood test came back positive, and I was scheduled for a biopsy, which also came back positive. I have celiac disease.
At least I had an answer now.
I have been gluten free since December 2004. I've been feeling a lot better, especially the past month. I am still tired, but i can go without a 2 hour afternoon nap now, which was impossible before GF.

My energy is slowly beginning to return. I can now spend time outdoors, which was impossible 12 months ago.
It is really good to not have the cramping and constipation aafter every meal. That, I think is the greatest thing so far.
I believe that generally speaking, I can only improve from here!

_________________
Diagnosed by blood test & biopsies Nov 2004
GF since December 1st 2004

Maggie

[wendycs]

[Yvonne]

Suppose this can't technically be called a success story yet - only been totally GF for a week but wheat free for 6 months. But the difference in this last week is unbelievable. Don't even look 6 months pregnant right now!

Also been told I had IBS for the past 8 years - what a load of bolony! Had constipation for 15 years, bloated stomach my whole life. Had really bad anxiety attacks, depression. Everything got really bad 6 months ago -bloating, constipation, nausea, pains, so tired all the time, headaches, heartburn - you name it.

Been to surgeons in the UK, GP's, homoeopaths, dietitians here in South Africa. FINALLY after finding this forum and realising what it was, got diagnosed a week ago.

Half the battle is just knowing what is wrong with me. I feel that I might die just not been able to eat bread though!

This is a fantastic site. Thanks everyone.

Yvonne

[aklap]

Yvonne,

That sounds like a success story to me!! That's great! So....you had to ask them to test you for this?? If so, were they reluctant to do so?

Keep up the good work! Try to tough it out on the bread cravings - that feeling does go away and you won't even miss it!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[luvscowznh]

[Guest]

Great thread Al!! We have much to add to this as well.
it may be long, please forgive me.
Matthew was born 2 weeks early by c-section. I had many problems with pre-term labor.
He had problems right off the bat. One or two of them are still unexplained, but 99% shoot straight back to Gluten.
He was breastfed for over 15 months. I would have gone longer (on a gf and dairy free diet myself, as well as him) had I had the support from the doctors, but they were good at making me feel like it was my problem, and a poor milk supply. (which was not the case after all) There are many MANY things I would have done different from the beginning, had I known all that I know now.
Anyway.. I won't get started with that again... They (as I have posted before) collected many stool samples, blood tests, 2 Endoscopies (sp?) which the 1st showed he had Eosinophilic Esophagitis and Gerd. The 2nd one they came back saying it was only Gerd. Well.. after many many visits to doctors, and hospitals for dehydration (after having 20-40 diarrheas in one DAY! for 30+ days), MANY MANY contradictive tests some showed an allergy to dairy, others showing wheat. He's even had a Low pos for Celiacs, which was dismissed by the GI doc.. Needless to say, mom got fed up, and was broken hearted for my son, so I decided to take matters into my own hands. It's nearly been a year since he's been to the doc for his condition. However, other than having a confirmed dx.. He's doing GREAT!!!!
It is my feeling that gluten has been a problem from the beginning for Matthew, but because it was overlooked for nearly a 1yr and 1/2 of his life, that it was the cause of the major problems he had with Dairy and Antibiotics. I could be wrong about this, but I feel that the antibiotics and dairy won't be as much of a problem for us now, but part of me is afraid of being wrong. So I will continue to do what I can to avoid them for his sake.
Now that he is completely gf and dairy free, we have MAJOR success. He's overcome all weight issues, infact.. he's the only 38 lb 2 1/2 yr old I know. He is wearing 4's and 5's. He LOVES to eat!!!! He's sleeping good, He's having normal stools. and as long as we don't allow any cheating, it stays this way. However, on the flip side of that, I can notice the effects right away if he does eat someting with gluten in it. Which makes me wonder again just why the doctors couldn't find something that obvious
Over the last couple of months, I've started talking to him about what foods he can or can not have, and why. I was worried about how he would react to it early on but I have to say, he's doing wonderful! At church he knows he has to bring his own snack, a couple of weeks ago, I saw him telling one of the other kids that he can't have their animal cookies, because "it'll make me poop alot". He knows he can have Soy milk, but can't have cows milk. We still have some tweeking to do on certain foods. for example, I let him have a couple of Junior mints one day a few weeks ago, and he reacted to it. (modified food starch has gluten right?) anyway.. last night we gave him some skittles (which by the way, I read it, and it has modified food starch in it, so I said,... buddy I don't think you can have these.. he didn't agree.. His reply was... "No mommy, they won't make me poop alot, them good for me!" I'm just watching and seeing how he does, I'll know today or tomorrow if they are problematic or not. I usually don't let him have much junk food anyway, so it won't be a big deal if he can't have them again. He's just as happy with a rice cake!
The short of it is, I don't have the support from the doctors, and very little support from family, However, Matthew is happy and healthy with his gf and df diet, and that my friends is all this mommy needs! I'll be happy to go through it alone, as long as I know it's the best for him. That's all that matters!

Ok.. I'll shut up now
Kristie