Okay so for about a year I have had a possible Celiac diagnosis based on skin rashes. They biopsied me and said its 99.9 % sure its celiac. I have had a LOT of trouble staying gluten free...in fact I haven't. What will happen to me if I don't find a way to do this? I need some motivation. I have periods where I don't have a rash and periods when its so bad I can barely stand it...like now...the Dapsone helps but I want to have another baby and I don't want to be taking medicine everyday. Can someone give me some motivation to do the right thing and cut the wheat out!
You might want to read "Dangerous Grains" and get some idea of what could be in store.
I think the thing to think about is how sick do you want to be when you hit middle age or beyond? It is easy to slough it off now because you're not feeling all that ill, but it'd be a shame to be down the road 10 or 20 years and regretting that you lacked the will to keep yourself healthy.
I think in a lot of respects this isn't much different from giving up a drug habit or smoking. Sure, you feel healthy (sort of) now.
Let's see... well, you want to have another baby, consider that DH IS Celiac period, and your chances of miscarrying or having a very complicated pregnancy are greatly increased if you are not following the gluten-free diet. If you are following the diet, your risks go down to that of the average "normal" population.
Gluten is poison to your body PERIOD. POISON POISON POISON POISON POISON. Repeat after me... POISON!
Well, I think a lot of us look at gluten as if it's poison. And to us, it might as well be for all the good it does us. And it is hard to stay 100% gluten-free when the reactions are not noticable. But believe me, your body will turn on you at some future date and let you know you shouldn't have been eating gluten for lo, those many years. I ignored the little four letter word malt in cereals and alcoholic drinks for years, thinking that it wasn't hurting me. But then I developed neuropathies - face was numb, hands were numb, I'd get out of bed in the a.m. and it felt like I was walking on stumps. After joining this board I finally realized what I was doing to myself and cut out EVERYTHING I could find that contained gluten and have felt better than I have had in years!!!
So, you can find out years from now that gluten is bad for you, or you can go gluten-free now and think healthy happy baby thoughts. (you do want another baby and be healthy enough to enjoy him or her in later years, don't you?) Think of going gluten-free as preventive medicine.
Ditto to what everyone else has said and you might want to consider the following information as well if you really want to have a baby. One of the most missed groups of Celiacs are those that have infertility issues due to untreated Celiac. This is fact, not fiction. And since not many fertility 'specailists' have ever heard of Celiac, they don't test their patients for it. Instead they just give them very expensive fertility treatments that WILL NOT work on undiagnosed Celiacs.
Good luck starting your new gluten free life. If you want to PM me for more help getting started please do. I've only been on the diet for 2+ weeks and I've not once looked back to my old way of eating. There is so much fantatic gluten-free food out there that I'm worried I'll gain weight! I'm saving different things to try each week and I'm having so much fun with this diet that I think something is wrong with me. I understand that I'm in the minority here but I grieved for what I may lose back in the fall pre dx. And I'm sure I'll have my fair share of bad days. But I really believe that a positive attitude is the key to going on and staying on this diet. I'm anemic and I already feel better than ever. I never knew my stomach was bloated 24/7 until I went off gluten and my stomach got smaller while I was stuffing my face with too many gluten-free goodies. It's pretty freaky to me really how much your body can change just from eliminating gluten. Please start your healthier life today!
Want motivation? We believe it KILLED my grandfather, but took YEARS to do. A slow, disgusting, humiliating withering death. Thats what I see anytime I think of someone eating glutne when htey have celiac disease.
I think once you realize the consequences of ignoring the diet and commit yourself to staying healthy...you'll find that its not that bad to stay off gluten. There are plenty of gluten-free options available to us. I second the suggestion to read "Dangerous Grains"....it will give you a very good idea of what gluten is doing to your health. There are so many health risks involved its just not worth it in my opinion.
Want to be around to see your grandchildren? My kids never got to, celiac killed my Mom first. I wish I had been diagnosed when my only trouble was DH, maybe I wouldn't live with the fear of cancer looming over me every day. Stop eating that poison and don't feed it to your kids.
Clearly you need to see a better doctor. Not going gluten free is akin to ignoring chemotherapy if you have cancer. You will end up with some horrible disease, most likely, and will probably take a good 10 years off your life. Don't do that to your kids!! And, get them tested as well because it is genetic.
In terms of motivation PLEASE ask us for help! We are here with all kinds of suggestions for everything you need! Believe me, there are resources and we are one of them! You CAN do this and should do this for your child and your future children!
Oh, and 99% is not a possible diagnois. It IS a diagnosis and DH is the same thing as Celiac with the same bodily harm.
I don't think there is anyone of us on here who didn't have a problem giving up gluten. Over 15 years ago when I was told I had a wheat allergy and should give up the gluten, I figured as long as it was not shortening my life then I would continue. Well, as it was really Celiac but know one knew or tested etc. I did not know then the hazards of having Celiac. At that time I couldn't give up the wheat and gluten. If my sister hadn't pushed me to have the test and impressed upon me her friends who had colonoscopy and has to have a bag the rest of their life, or the possiblility of stomach cancer and other problems. Then with the positive testing of DH I am now vigilant over being gluten-free. All I have to think of is the pain, the DH and all the other problems I had and got with being on gluten and it stops me.
Just like others have said it is like quiting drugs, smoking, alcohol. You have to hit rock bottom first and my rock bottom was realizing that this can kill me, slowly and painfully and I am not one who likes pain.
Jodikris- it must be hard to be gluten-free when you don't really feel THAT sick. I get extremely sick from just the smallest amount but there are times when I'm feeling really good and I wonder what would happen if I just ate that cookie or whatever, but the risks are far too great and i've been sick long enough and too often.
What everyone said here is true- I watched my mom, who was my best friend, die of stomach cancer in 4 months. It was the biggest heartbreak of my life.
Hi. I had to go gluten-free without ever having a symptom. It has been HARD! But, ultimately, I want to be around to see my kids grow up, and I want to be a healthy mom to them, so I do it. I think we all find our own motivation for doing it. For me, it is a chance to be proactive about my future, there are a lot of things I want to do in my life and I won't be doing them if I am crippled by osteoporosis and fighting cancer. For others, the obviously horrible physical symptoms are all the motivation many of the posters here need. When I think about quitting, or think of cheating cuz no one would know (not even me, at least not physically), I just remember that not only do I want to live, I want to live well. It all comes down to quality of life. I do sincerely hope you will find ways to make it easier for you, it's not an easy way to eat, but I don't let it control my life. Best of luck.
I just recently learned from my sister that my mom was celiac and knew it. She wouldn't give up her breads, though. She died in 2004, at the age of 63. She had been in and out of intensive care for 1 1/2 years, with ruptured bowels. She didn't get to see my youngest two kids graduate, nor did she get to see my grandson. I want to rock my greatgrandchildren to sleep, so I stick faithfully to the glutenfree lifestyle.
BTW i have NO fertility problems. I have been off the pill once in 10 years and I got pregnant within a month.
Jodikris, I weighed 260 when I was dx'ed... 3 years later I am at 160 and eating more food than I ever did.
A gastroenterologist is generally the best dr. to see, but you will want to make sure that the one you see is not only knowledgeable about celiac, but dh as well. If you are not comfortable with their level of competence with this disease, find another dr. Ask members of a local celiac support group who they would reccommend. Or for that matter, who they wouldn't!
I have it, my mom had it, and we both are/were overweight. Celiac messes with the immune system if you keep eating gluten, so it shows itself in vastly different ways. Symptoms exhibited by one person can be the exact opposite of what another shows. Have you had an endoscopy? A GI doc needs to take samples from the lining of your small intestine for biopsy. Your dermatologist ran tests on your dh and said you have celiac, so chances are an endo will show the same. Do you know what blood tests were run? Did your doc do a celiac panel, or just a screening?
Motivation - I can give you motivation.
I have been sick off and on my WHOLE life (I'm 47 now). I was finally diagnosed with Celiac 2 years ago (2 days ago was my anniversary). I ate some form of gluten every day until 2 years ago - for most of that time it didn't seem to affect me. I went months - sometimes years without a problem. I would have "spells" where I would have problems that the doctors didn't know what to do about. I had cat-scans, MRIs, x-rays and blood tests, but nothing would be found wrong. So I would be send home with no help or hope of getting better. When I felt good I would be out there doing everything at once. It just slowly got to me to where I thought it was normal to feel pain all the time, normal to have to know where all the bathrooms were located no matter where I went, normal to be tired all the time, and normal to have to rest a lot. I thought all of those things were normal up until the point I found myself praying that I would die today so I wouldn't have to go thru this anymore and being disappointed to find myself alive the next morning.
Today, I have several health problems: Diabetes, Fibromyalia, Chronic EBV, GERD, Adrenal Insufficiency, Aluminum toxicity, mind fog & memory loss to the point I thought I had Alzheimer’s, my thyroid, pancreas, metabolism and pituitary gland all for the most part have decided to stop working, I have many food allergies, and....well are you starting to get the picture?
If you have Celiac Disease and keep eating gluten you will eventually pay the price. I wish any one of those many, many doctors that I went to for help had the smarts to diagnose me before I got ill. Most, if not all of my health problems would have been avoided. At this point I am taking 40+ pills a day, just to keep going.
I hope you find the motivation to go gluten free.
Think of stomach or colon cancer. If you don't think you have suffered enough it is your right to suffer more. Personally, I don't enjoy suffering and that is all the motivation I need. I do not enjoy DH or suffering with it and having my face look like some kind of leper. However, I guess if you enjoy pain and suffering then you will never give up the gluten. Everytime I have a craving for a pizza, I make myself a gluten-free one. If I crave a cookie I either make or buy the Kinnickinnick chocolate chip cookies.
I could tell you my story, which started with DH 25 years ago. Unfortunately, it wasn't recognized as DH, so now I have Many, many more health issues. I only found out what I had a few months ago and have been gluten free since. You questioned how you could be overweight and celiac - the problem most people (and most DOCTORS) forget is that a main symptom of celiac is MALABSORBTION. They think of it only as under absorbing things, like iron so you get anemia. But something like 30% of celiacs have an OVER absorbtion problem, and gain weight or get HIGH iron levels (which can also be dangerous) or high calcium levels, etc. Malabsorbtion shows up as food not being absorbed CORRECTLY, both more and less than is normal. Celiac may well be the CAUSE of your weight problem, and going gluten free might be all you need to lose weight. Adding eating right and exercising would be the best thing you could do for your body, and your children, born or unborn.
Okay well you guys convinced me to make an appointment with a gastroenterologist for Tuesday at 8am. Thank you all for posting.
Yes, please keep us posted.
Thank you all for caring. I feel very alone right now and part of me feels so silly for feeling this bad about it.. I can't tell you what your posts meant to me. I showed my mom and dad and all the people in my life!
We have all felt this way and sometimes I still do at times. However, I remember I have everyone on this list just like me. I know I am not alone and I have the best support group right here and so do you.
Sweetie, please don't ignore this. You owe it to yourself and your family and friends to be as healthy as you can be.
My dad died of stomach cancer at 61, I now believe that he had undiagnosed celiac. At first, you might think that 61 isn't bad, but it was. At 61, my dad had retired, and was married to the love of his life. He was working on getting some of his inventions patented. He had never been happier in his life.
He got his cancer diagnosis in late June; the day after Father's Day 2004, and two weeks before his only granddaughter's 2nd birthday. He lived only 6 months after his diagnosis. Up until mid-October, you wouldn't have even known he was sick to look at him. By Thanksgiving, he weighed 120 pounds and was in a wheelchair. He fell into a coma early in the morning of December 24th. He died at 12:03 am, December 26th, 2004. His only grandson's first birthday was January 21, 2005.
You might get hit by a bus tomorrow, but don't let the bus be something you could have prevented, because it can come during the best years of your life.
You can do this. Without this board, I would have felt lost and overwhelmed too. It's not silly at all to feel overwhelmed. Just keep coming to this board for support, and you'll do fine.