Help

[bknutson]

Be honest, do any of you really wonder if this is all true or if it is just a scam that drs use to make a big deal of ? Ya Know at first I hurt but I had for along time. Now I dont and I have eve went as far as to see if I could eat stuff and it didnt hurt. The one day it did. but then not for a while again. Is this really celiac do you think or am I just an idiot. The doc that diagnosed me was over this big celiac thing in slc so I wonder sometimes if he just wanted to get it going good like the big lymes disese scare. I feel like I am crazy I lost weight and now I am just putting it on like crazy which depress's me. Every one i work with thinks It is all silly and they eat all this stuff in front of me. I dont get diarea I get the oppisite. I just get pain. I dont throw up. Then I get gas and it last about 5 hours. But that only happens sometime. Please help me staighten up or just play russion rulett or tell me some of you have felt this way,

Barb

[tarnalberry]

If you tested positive, you have it. Period. It's not a game, and if you have the time, there's an awful lot of studies to read on pubmed.com (redirects to the site that archives journal studies).

Not everyone has the same symptoms - even the diahreah. Many people do *not* throw up. Not everyone gets severely sick. There's a wide range of symptoms. If you feel better gluten free, you *need* to stay gluten free.

I know it's tough to get started, but once you get past the learning curve, it does get easier.

[darlindeb25]

Barb, only you can decide to do the right thing. We can't force you. If you were diagnosed with celiacs and the doctor did an actual test to diagnose you, then I would not doubt him/her. If you know you feel better when gluten-free, then that should be all the proof you need. Maybe you do not have symptoms when glutened, some people don't. Being celiac is very real and something we all wish was not true for us, yet it is and we all need to learn to live a gluten free lifestyle.

[Rachel--24]

Barb,

If you tested positive for Celiac...its no game. You gotta play by the rules or risk your health by playing Russian Roulette.

If the Dr. just *looked* at you and diagnosed you with Celiac...well then that would raise questions. If tests were run and this is what you've been diagnosed with...even though it may not be easy....it is what it is.

Its not such a bad thing if the Dr. is "big" on Celiac....it just means that he is more aware and more likely to diagnose people who might have otherwise been overlooked.

I dont think the Dr.'s are playing games to make money off Celiac. How much money can you make off of something that requires no treatment....other than diet change??

[bknutson]

Barb,

If you tested positive for Celiac...its no game. You gotta play by the rules or risk your health by playing Russian Roulette.

If the Dr. just *looked* at you and diagnosed you with Celiac...well then that would raise questions. If tests were run and this is what you've been diagnosed with...even though it may not be easy....it is what it is.

Its not such a bad thing if the Dr. is "big" on Celiac....it just means that he is more aware and more likely to diagnose people who might have otherwise been overlooked.

I dont think the Dr.'s are playing games to make money off Celiac. How much money can you make off of something that requires no treatment....other than diet change??

Rachael, I cant beleive you have all that. And I tested positive for Lymes a couple of years ago too but brushed it off. I thought the dr was a quack. And yes I had and upper GI and they took a biopsy, blood work. It just seems that the times I do eat something it doesnt hurst any more so what the heck ya know. So I get thinking is this just a joke or what. I did lose alot of weight befor and now I have gained a lot back so I have to wonder about it. Why would I. I live out in the sticks where I cant go to any support groups or anything. It is just really hard. And i am an old woman. But thankyou so much to you and all of you for the supporting answers, I really appreceate you. You are angles..

Barb

[Rachel--24]

Rachael, I cant beleive you have all that. And I tested positive for Lymes a couple of years ago too but brushed it off. I thought the dr was a quack. And yes I had and upper GI and they took a biopsy, blood work. It just seems that the times I do eat something it doesnt hurst any more so what the heck ya know.

Barb,

I can totally understand your questioning things....especially if you dont have good support around you.

This board is my support...everyone here understands.

Positive bloodwork and biopsy = Celiac Disease. You do not need to question a diagnosis based on these results. Not everyone gets pain after they eat gluten but if the biopsy was positive then it shouldnt be questioned and the diet should be followed.

The fact that you gained weight back supports the biopsy results. When you follow the diet you will not suffer malabsorption and weight loss.

A positive diagnosis for Lyme should be taken just as seriously and if untreated can lead to some very serious consequences. The Dr. may have been a quack but the tests dont lie. I would see another Dr. about this.

Its very possible to have both Celiac and Lyme Disease. It takes a blow to the immune system or some type of stress to trigger Celiac...is it possible Lyme could have been that trigger? I'm not sure which came first for you??

I dont think a positive diagnosis of either Celiac or Lyme Disease should be brushed off. They are both very damaging to the body if ignored. Please take the diet seriously and please see another Dr. who is knowledgeable about Lyme.....these things are no joke.

[Ursa Major]

Barb, I have to agree with the previous posters, especially Rachel. She knows first-hand what Lyme disease is about, too.

Did you replace a lot of gluteny things like bread, cake, cookies, pasta etc. with gluten-free ones? The officially gluten-free foods are much higher in carbs and sugar, and will make you gain unwanted weight.

Constipation, stomach ache, gas and bloating are all common celiac disease symptoms as well. Not everybody gets diarrhea. And most people with celiac disease don't throw up from gluten, I never have.

Please do yourself a favour and stay on the gluten-free diet in order to avoid eventually getting severely ill and possibly dying of cancer of the digestive tract.

And I second Rachel on the Lyme disease thing. You need treatment for that, too. Lyme disease is very underdiagnosed (just like celiac disease), and it is actually hard to get a diagnosis. If you tested positive for either one, you have it.

Some researchers are now saying that Lyme disease causes Alzheimer's. They have biopsied a lot of people that died of Alzheimer's, and found the Lyme bacteria in all of their brains. I don't mean to scare you, but please don't brush it off.

[GlutenWrangler]

I'm sorry, but I can't for the life of me understand why celiac disease would be a scam created by doctors. It may not be easy to deal with the diet, but there are worse things in life. You have a cure right in front of you; the gluten-free diet. Many diseases don't have cures, and many people die because of this. By following the diet, you will live a longer, healther life, period. It's not up to anyone else but you.

-Brian

[ianm]

In my experience celiac is the one disease that doctors don't want to diagnose because they can't make any money off of it. Think about it. To treat celiac you eat a gluten free diet and that is the only thing you can do about it. There are no pills or expensive treatments of any kind for celiac, just the diet.

[bknutson]

You guys are all really nice and I thankyou. I am going to go back to my Dr and give this all another go. Maybe I will feel better. I have no support system out here except my husband and some people think I am a quack. So I will stick with it and get on board. I hope you dont mind if I chat with you guys all the time. Thank you so much.

Barb

[tarnalberry]

Please post, vent, ask questions, and offer your own opinions as often as you need to. That's what we're here for!

[Ursa Major]

Barb, I am glad you are giving it another try. And yes, absolutely come and ask any questions you need to ask! That's what this forum is all about.

[GFBetsy]

Barb -

In the Celiac Meeting Room section of the board, there's an "Anyone from Utah?" thread that might be of some help to you. You may find out that there are more people in your area dealing with the disease. Are you in northern or southern UT? There are free gluten-free cooking classes at the Provo Macey's about once a month that might be helpful, if you could make it. Check the website www.eatingglutenfree.com for class dates. Also, there's a gluten free store called Against the Grain in Taylorsville, or the store Water2Go in St. George has quite a selection of gluten-free foods.

Good luck!

[quantumsugar]

Barb--

I don't have too much practical advice for you, but I just wanted to reassure you that all these feelings are kind of normal. I was really, really ill when I was eating gluten. When I cut it out, I started feeling better (a bit) immediately, and kept feeling progressively better. And I would still wonder if I "really" had it (I wasn't originally diagnosed by a doctor).

Everyone has a different emotional reaction to this diagnosis. That's normal. For me, it was very, very obvious that I was ill and cutting out gluten made me better. But I had a really hard time dealing with the emotional stuff--knowing that I couldn't eat what everyone else did, missing my favorite foods, handling friends that didn't believe me at all (they do that even in the big city ) , not getting better as quickly as I'd hoped.... It was incredibly difficult in the beginning, and I felt all alone in it. It sounds like you might be having trouble dealing with the emotional side of it a bit. Reading this forum helped me a lot, and there are a few good books that talk about that (Danna Korn's Wheat-Free, Worry Free is one), and also discuss the disease and why it's important to stay gluten-free.

This is a disease. If you have it, you can't eat gluten. That sucks, but you'll end up hurting yourself if you don't. There is a huge list of associated conditions that you could develop if you keep cheating. Like stomach cancer and diabetes and osteoporosis... It's not worth it to play russian roulette (it's not even really russian roulette--even if you don't show symptoms, it does damage to your body every time).

And for the gaining weight... I started to do that at first, too. Something that can help keep your weight (and Celiac) under control is eating very simply. Most of the time I have rice, plain meat, lots of fresh fruits and veggies, olive oil, beans, and potatoes. It's low enough on fat and simple carbs, high in fiber, and super yummy. (And the fiber would help with any lingering opposite-of-diarrhea problems).

Good luck... it's so amazing to watch your health improve (very slowly sometimes...) on this diet. I'm really proud of you for going back to your doctor and giving it another shot. Hope you stay around the forums, they were a huge help for me.

[larry mac]

Barb,

I'm 55 and had a messed up stomach for several years. Eating my favorite foods that I had been eating all my life started making me feel ill and have bad intestinal problems. Finally was diagnosed 6 weeks ago with blood and biopsy tests. Haven't had a bite of gluten in 6 weeks and feel 1000% better. I sleep all night long and don't get sick when I eat anything now - ever!

Of course I was really bummed out at first, nobody loves bread and all things flour more than me. But what my doctor told me would happen has happened exactly like he said. He said "larry, you are going to feel so much better that you will be happy to be on this diet and it will not be a problem for you". He was so right.

You have a computer and internet access. Use it every day. Use the links on the main page of this site and read all the medical papers. Do a "google" on celiac disease, read all you can about it. When you do, you won't be wondering if this is a scam. When you are knowlegeable and confident, people won't be able to doubt you or call you crazy. You just tell them to shut-up, you know what you're talking about and they don't.

When your convinced, throw yourself into the diet, it takes work and commitment. There's no crying in baseball and there's no cheating in gluten-free. Get the stuff you need and start baking. Everything you need to know is on here and other places on the internet. Make your own bread, muffins, cookies, pancakes etc. Keeps you busy, and active. You can do it!

best regards, larrymac