nettiebeads

A Very BIG CONGRATULATIONS!!!!

I agree with those who recommend the diet challenge for your child. Non-invasive, and with children you usually get noticiable results fairly quickly. I haven't ever had any of the blood work or biopsies or anything like that. My gp dx'd me via the diet. No gluten = no D. Voila! Dx!! And believe me, I know I have celiac disease. Give me gluten and my body and mind are messed up for a week. The only test I'm interested in for myself and my dd is the gene testing. Anyhow, another mother here tried the diet for her toddler son and was impressed within two or three days! Her post was about two days ago. I can't remember her name, but you could search the site for her posts.

I've been gluten-free since Sept 28th and I know I'm not getting glutened. When I went gluten-free I felt 100times better for a long time but the last few weeks it is like I'm back to square one again with awful acid reflux. I'm getting more tests on thursday and my doc recommends doing a new colonoscopy and endoscopy after Christmas. I'm on protonix for now, but he thinks there is a possability for refractory sprue (lets pray not)...any one else go through this?

Hugs

Bridget

I've noticed that certain types of gluten-free breads give me really bad heartburn. Have you been able to tie it to a certain food type, or is it everything? I haven't been able to tie mine to any particular grain, as all of the gluten-free breadstuffs use so many different flours. If I crave baked goods I know I'll be going for the gluten-free antacids later.

Annette

Thanks everyone for the validation. 2 days now gluten free and I am actually feeling better already. I think I'll stick with the gluten free diet and get back to life. Does anybody know where I can go to find a list of prescription drugs to avoid in this situation, or are drugs even an issue when it comes to staying gluten free?

That's the wonderful thing about celiac. No prescriptions. That's one of the reasons I think that drs underdiagnose it. You stay gluten-free by carefully watching what you ingest, watch for cross-contamination, and always be on the lookout for hidden gluten sources - hand lotions and such that contain oat and wheat germ oil. Be very careful when dining out. If you do dine out regularly, the Triumph dining cards are highly recommended (I have a set. Don't leave home w/o them )I also take selenium (gluten-free of course) which helps me with my concentration. You will become a seasoned label reader in no time. And at first it seems intimidating, but like anything else, after awhile it will be second nature. Good Luck!!!

I have been diagnosed since the end of July. It has been a battle and I still am not totally gluten free since I am a stupid idiot and didnt realize I was getting it in some differant places. My hair is falling out. It is getting thinner and thinner. Does anyone have any answers? Also I lost a ton of weight and that was good even though I was way sick. I needed to lose weight. Now I have stopped and I am afraid I will gain it back. I still hurt all the time and sometimes I feel like what the heck. I am gratefull to know that what I

have is so much better than cancer or so many other things, and I am so lucky to have the good health soI dont want to complain to bad. It just gets way frustrating at times.

Thank you to all you for being her

"Barb

Sorry to hear you're still having problems. Are you feeling any better at all? Maybe you have something else going on - some of the posters here mention leaky gut. Are you taking supplements? If so, are the gluten-free? And whay kinds? You may be still getting glutened from hidden sources.

Hi all, Just moved to Oregon from Ann Arbor, Michigan. Before I moved, my last call before my phone was disconnected was from my MD stating my blood tests showed Celiac Sprue as the reason for my varied health probs. He said get hooked up with a GI specialist in Oregon ASAP.

Well, I've moved the remote Oregon southern coast...lovely here, but no medical centers. Had to drive 3 hours to see a specialist who was (not to mention rude/dismissive) skeptical about my diagnosis. Said I should get an endoscopy/biopsy, but wasn't clear on whether I should resume a "gluten-full" diet to get a proper reading.

I know I should switch to someone more receptive and knowledable, but options are not many here. Any advice? Should I go back to gluten-free diet to get a proper reading? And is a biopsy the way to go in the first place?

I have felt better since doing a gluten free diet for 2 months. I do still have symptoms, but instead of 7 days a week of pain and non-glory, I have only 2 days on average. This specialist seemed to think it was proof I was not a celiac. Please advise.

I think your "specialist" is specializing in B.S. The bloodwork said celiac. There you go. The biopsy is NOT the gold standard it was thought to be. The samples could be taken from areas not damaged, slight damage could occur where it is misread as normal...You have had a positive test for celiac disease. Two in fact - the diet challenge. The fact that you are feeling better w/o the symptoms every day would be proof enough for me. BTW, the diet challenge is how my dr dx'd me 9 yrs ago. The 2 days avg/week of symptoms could be from a variety of things. I don't know how long you had symptoms, but the longer you were un/misdiagnosed with celiac disease, the more damage was done to your system and therefore more time to heal completely. And you could be getting hidden gluten or be victim to cross-contamination which would cause the symptoms. Your body is telling you it likes the gluten-free diet much better than a gluten diet. Listen to it.

Annette

Hey Joe!! It sounds like yes, you do have definite gluten related issues. You could stay on gluten, keep a food journal and go through drs to have you officially dx'd. Or you could realize that you have had a positive diet challenge for gluten when you went on the low-no carb diet. I was dx'd just with the diet. It was enough for my dr. But the problem is that I was stubborn and continued to consume gluten in the form of malt (flavorings for cold cereals and in coolers). I didn't understand just what that was and didn't have any overt symptoms like I had with wheat, so I thought I was okay. But it was all I could do to get through the week (and I'm a desk jockey) and was terribly unproductive. Then I started getting neurapathies - mornings I would get out of bed and felt like I was walking on stumps! And the brain fog. One Monday I went back to work and it was all I could do to remember how to run my software accounting program - and it was the same program I had used for 4 years!!!!! But thanks to this forum (and Scott who should be nominated for sainthood) I learned what I was doing to my body. I'm totally gluten-free now and am feeling great and am so much more productive at work. Try the gluten-free diet - what have you got to lose, and look and what you could gain!!!

Annette

I just read on another forum that a person

gave up wheat and had an improvement in her

vision.

Has there been any research on the relation of

gluten and vision?

This is important to me as I have 2 sisters with

macular degeneration. If there is a relation I want

to send them the info.

Man, that's interesting. My daughter's grandmother has that - said it's hereditary in that family. I'm really trying to steer my daughter into the wheat free life. Me with celiac disease and being half swedish, and then her dad's family is definitely from an Irish extraction and half of them complaining of stomach problems. She already has PCOS so I'm wondering if she's in for more problems.

Could someone please explain the mental issues that can happen with gluten intolerance? I have some severe mood swings, and I wonder if it is gluten. I am talking major mood swings, too the point of needing therapy.

BamBam

Have you kept a food diary to see if there is a correlation between what you ingest and mood swings? I know that my depression would just overwhelm me after I had been glutened, even though I'm on 50mg of zoloft daily. (the zoloft is for long term depression pre-celiac disease). But I do know what you are talking about. If I've been glutened I get such a rage that even my husband's breathing irritates the h**l out of me. I just isolate myself with a book or a needlework project until the gluten is out of my system.

Annette

Hi Cami. I would think that your body is telling you that it doesn't like gluten. You could keep a food journal with dates, what you ate, and any and all or no reactions. Maybe if you did that for 3 to 4 weeks and took it to a dr., he might have some recommendations. Or you could "self-diagnose" as another poster or two have done and go gluten-free anyhow, just because your body feels better. And by the way, you have already tested positive for gluten problems - you did the diet challenge. That's how I was dx'd by my dr. My curren gp admits that the tests aren't realiable or as sensitive as the medical community would like them to be. There is something going on with your body, listen to it!

Annette

thanks for the info, i just got dx...so i havent ventured out yet....but im not going to be scared just very picky! just wanted to ask though, did u get the all cuisine one? whats the difference?

thanks a bunch

I have the all cuisine one. Well, really six. All of them are printed in English on one side and the other in whatever language - Spanish, Japanese, Thai, and I foget. (not that many options in my town). It explains to each nationality what we cannot have and what possible cross-contaminations can occure. And there is differences in soy sauces. Thai cooking uses a differently prepared sauce than other cuisines that, if original, we can have. There is a load of infomation on each card in very concise but easy to understand terms. You will not regret having them.

Annette

Listen to your body - it's trying to tell you that it needs more. More of what is the problem. Your body is healing itself, which takes up energy that you supply in the way of calories. I would suggest more foods, but try to make them as protein dense as possible. I don't know what exactly to suggest as I'm not a vegetarian and haven't ever read up on it. But I do know that a high protein diet has been recommended for those with celiac disease; I've read it from more than one source. Hope this helps.

Annette

Hi Craig, and welcome to the forum!! I noticed on your post you mentioned being 100% cured. But as celiac goes, it's an autoimmune disorder with no cure. What you are doing is altering your diet for 100% elimination of symptoms and gluten reactions. Just like a person with type II diabetes can alter his/her diet so no more sugar is spilled into the urine and the body will act like it's cured. And as for increased risk of complications - the longer you are gluten free the increased rate of complications returns to that of the general non-celiac population. So keep up the good work in being gluten-free, watch for cross contaminations and hidden sources such as OTC and lotions and such.

Here's to healthy living!!!

Annette

Yep, that is so cool! Not that I think it's great to have celiac disease, but I am so looking forward to the day when it'll be like saying you have diabetes - and get an understanding and/or sympathetic nod instead of the blank stare and endless questions.

It's true that the younger one is, the easier it is for them to develop compensenting skills. I'm glad the audiologist recommended an ENT. I wish I had been sent to one years ago by my gp. But then again, this was the same gp that dx'd my celiac disease via the diet challenge.

And wasn't it in one ear that his hearing seems to be acutely affected? And btw, I think he's getting even cuter. Thanks for updating his pic.

Annette

My 2.5yr old has been gluten-free for a few months now and I have noticed that his skin rashes have cleared (they were just eczema type rashes on his torso), his poop is slightly darker, now "sinks" most of the time, and more formed and down to about 3 a day opposed to 5-6. I was thinking this was quite good, but I'm questioning whether it is "enough" progress. His poop still looks quite full of undigested food. Why I'm starting to doubt myself is we finally had our Paediatrician appointment yesterday and he gave me a bit of a hard time about not having the biopsy done for my son. When I said that surely because his bloods came back positive and that I was seeing positive results from the diet then wouldn't that mean Coeliac? Anyway, he kind of grumbled his agreement, but it's left me wondering if I'm *imagining* the changes in his poop since it's not a dramatic improvement iykwim?

How long would I expect to see his poop completely change?

I'm glad you stuck up for your decision not to have the biopsy. And I doubt if you are imagining things. A biopsy could have shown how much damage was done to the villi, but then again, it could have not shown anythig wrong. Just keep your baby on the gluten-free diet, all people, regardless of age, respond at different rates to going gluten-free after being dx'd with celiac disease.

Most of my gluten dreams are of eating something that I used to love, and then realizing after I'd taken a bite that I shouldn't have done that!!!! The dreams used to be rather frequent, but since joining this site and becoming more vocal and proactive about celiac disease and finally bothering to bake some of my faves in gluten-free form, the dreams have drastically decreased. I think it's your subconsious mourning the loss of your former eating style. But what's kinda of funny to me, I just realized, is that in my last dream I can't remember exactly what I was eating, because I can't remember how it was supposed to have tasted. Some kind of cookie maybe?

Annette

Same here. I felt so isolated before joining this site. Now it's part of my regular morning routine. My health is so improved because of what I learned here. I can't begin to express my thanks adequately, but a BIG thank you, Scott.

Annette

I have to bite my tongue here. I could really make somebody really mad!

Gluten does nasty nasty damage to the body.

Certainly you can test by eating it continually until real damage can be 'proven'. By then you have a problem or maybe many problems - instead of what you have now. If you push your luck you will most certianly develop other autoimmune diseases. Your intestinal lining will be a mess. Or perhaps your brain will be damaged and you will have to deal with the neurlogical results of that.

How could there possibly be any choice here?

Sorry, I am opinionated. Claire

Nope, not opinionated, just bluntly factual. Even though I was dx'd with celiac disease 9 years ago, I didn't want to do w/o my cereal and light drinks. I ignored the word malt for years thinking I was okay - I didn't have the overt symptoms of being glutened. But after nine years of this, I finally joined the forum and realized what I was doing to myself. I had been experiencing numbness to my face and legs (felt like I was walking on stumps most mornings) and had attributed to aging or something else. This forum made me realize the link between neurapathy and gluten. I confessed what I had been doing to my dr, he believes it'll take 12 to 18 months of being REALLY gluten-free this time to undo the damage. But my legs are getting better. DO THE gluten-free diet if your dr recommended it. It's only your health for the rest of your life.

Annette

When my son was born he had one of them there infant hearing tests, and passed with the absolute best score possible. He is around 2 1/2 years old now, and is not speaking yet, at all. So via a program with the state we have 2 speech tutors come to our house weekly to work with him (on 2 dif days) been that way for several months now, and at our request they sent an audolgist to our house to test his hearing. He failed!!! His left ear got about the worst score you can rate on the meter. They redid the test with several weeks inbetween and used different equipment to be sure. So now we have an apt with an ENT to check him out...

Does this happen with celiac disease? Any relation? Probably not I guess.. but man.. poor kid been through enough already!

Poor lil guy! Since he had great hearing at first and then it deteriorated, something must have happened, and I can see how you would blame celiac. All I know is that I've had congestion for months now and I think it is related to my consistant low poisening of myself w/ gluten (I ignored the word malt for years). My dr said that it'll take 12 to 18 months to reverse the symptoms. Anyhow, on the positive side, you are taking a proactive approach w/ your son's hearing. I suffered from repeated ear infections when in grade school and have suffered permanent loss of high and some low frequencies. Remember, this was before the term "glue ear" was around and the seriousness of congestion in the ears wasn't fully understood. But it did give me some empathy with the hearing empaired.

Annette

We now know that there are way more false negatives with these tests than are positive. My dr said that the tests still aren't sensitive enough to thoroughly test for celiac. But since you had a positive, you know what you have to do. And believe me, after awhile the gluten-free diet will become second nature. And you will SO enjoy being healthy that it will be very easy to avoid gluten items. It will become ingrained Gluten=bad,

gluten-free=GOOD!

Annette

I also highly recommend them. I got mine the same day we were taking my mother out for her 84th b'day. I showed the american to the waiter and told him I was thinking of the beef tips. He took it to the chef, came back with the report that the meat comes preseasoned with soy sauce and couldn't recommend it. But any of the grilled chicken or fish dishes would be okay. Saved by the card! The only negative experience I had that night was my brother sitting next to me waving the freshly baked bread sticks under my nose and chanting "wheat........wheat.........wheat"

Annette

Hey guys,

I need advice. I know splenda is a gluten free product, but could it be contributing to my symptoms. I been gluten-free for three months now, but still feeling kind of sick. My mom suggested that I should eliminate any artificial sweetners from my diet. Has anyone had reactions to Splenda??? Come to think about it, I use Splenda everyday- in my coffe and 10 cups of tea a day, plus any products like diet soda that I drink. Any comments or experiences would be appreciated. Thanks!

There are posts on the web from people who cannot tolerate Splenda. Even though it is made from sugar, the source of the sugar is the problem - methyl alcohol I believe, or commonly known as wood alcohol. Anyhow, it's hard on the liver supposedly. I would highly recommend trying going w/o and see what happens. Couldn't hurt.

I agree with Rice Guy. It wouldn't hurt, and you might be surprised by the results.

I was the one who poasted about getting glutened at work because I got stuck in the bakery.

I found out that "aggravation of a pre-existing condition" leading to the cause of missing work means that I can file a workwoman's compenstaion claim. When I called H.R. and did just that, the reaction was stunned scilence. Go figure, she was shocked that my boss didn't do ANYTHING after the first time I got sick and was allowed to miss more and more work.

I'm on leave right now, waiting for another deparement opening and will be returning shortly.

Thanks for all who left support.

Good for you!!!!! We have to be so proactive to the point of others thinking that we're plain obnoxious. But that's their problem. Here's to a healthier future.