Introducing Myself

[thenamesbabe]

Hi, My name is Babe and I just found this website tonight. To make a long story shorter I have been sick for three years. I was told everything from brain problems to kidney stones, galbladder, and depression. I couldn't eat without getting sick, my wait was all over the place up and down day to day up to 10lbs different. After eating I looked like i was six months pregnant in the belly. (i'm 5'5 / 120lbs) I had chronic diahrrea (sp?) extremem fatigue, bone pain, terrible cramps, you name a symptom i pretty much had it. After 3 years i'd about given up, i thought i was just going crazy and it was all in my head. My first gastro doc said it specifically wasn't celiac because i wasn't african american so that was ruled out. I went another 2 years sick all the time until the pain had gotten so often i was in the ER about every other week and sent home on pain killers with no answers. We live in a tiny town so I went to the "big" town 1 1/2 hrs away to see another gastro doc. He did lots of tests, looked at 104 biopsy's done, etc. and said I have a severe case of celiac disease and sent me to a nutritionist. Let me tell ya, that guy didn't know as much as i did! I've been on a gluten free diet for about 6 months now and have cheated my fair share of times. I can't say that i really realized how important it was and how it would really damage my body if i didn't stop. The nutritionist didn't push that on me at all. Now i've realized that it is a poison to my body. I've done much better on my diet now that i've realized that. I'm 26, have 4 kids and used to be a healthy person.

These are my concerns that i hoped this site and forum could help me with....

7 years ago I was 5'7, a year and a half ago i was 5'6 and now i'm 5'5. That's 1 inch shorter in 6 years and another inch shorter in one year. That seems abnormal. Another thing is that the cramps have started back again and I'm not sure why. They are in my low back, my lower right side like by my pelvic bone and hip bone, and then in my belly button. The same cramps like all those years before. Why would they be starting back again? I didn't eat anything with gluten in it today yet the diahrrea was there everytime i ate. As if i was eating bread or pasta. I've been searching the web and found stuff like intestinal cancer and things like that but how do you know if you are getting worse? does the cramping mean i'm getting worse or have something else wrong? The new gastro doc did blood work and something that made me drink nasty soapy water and take xrays every 15 minutes. and then he looked at the biopsies of the upper GI and the " the the rectum" camera thingy. but he didn't take any new ones, and those were over two years old. things could have gotten seriously worse couldn't they? I had an abdoninal endoscopy thing in my belly button just a week before i went to the new gastro doc, my GYN did it thinking something was "female like" wrong with me. He said he found nothing but endometriosis.

So there's what's happened to me so far, I'm very confused and plan on calling the doc on monday to tell them they have to work me in, my cramps are coming back. I was hoping that someone on this forum might have an experience like mine or have greater knowledge that can steer me in the right direction so i can have a long happy life.

thanks ahead,

babe

[queenofhearts]

Welcome to the forum, Babe! This is a great place to find answers.

Your height loss is making me think osteoporosis-- a fairly common Celiac symptom, since we have trouble absorbing calcium. Have you been tested?

As to the gastric symptoms, are you sure you are really gluten-free? Have you checked your cosmetics, cross-contamination issues, & so on?

Leah

[thenamesbabe]

thank you leah,

i don't wear make up so that shouldn't be a problem. As far as cross contamination, the nutritionsist that knew nothing said that i could use the same pots and pans that i cook other food with if i wash them well, but not to use the same spatual to flip a pancake and then use it right away to stir eggs. What other cross contamination is there?

[queenofhearts]

Do you use hand lotion, sunscreen, lip balm, moisturizer, shampoo? Any of these could pose a problem.

You might look at Nini's Newbie Kit to get a fuller idea of cross contamination issues... they're actually quite complicated, but worth pursuing because those tiny glutenings add up.

Nini's site: Open Original Shared Link

Leah

[Lisa]

Babe:

Leah is correct. You sound like you have classic Celiac Disease with major bone loss. Please get a bone density test.

In the interum, make sure that you cosmetics, shampoos, lotions, toothpaste or anything you can ingest into your mouth. Gluten is everywhere. Dove shampoo, Dove soap, Crest toothpaste, Burt's Bee's lip gloss are all gluten free.

Also, LaChoy Soy Sauce, Leah&Perrins Worst. Sauce are gluten free. As well, some meds do contain gluten.

It is very apparent that you doctors have NO clue.

Until you have your appointement. Please ask about gluten free foods.

Please go gluten free asap. And, ask away. Your health is very important to us and we have all been in your shoes.

Lisa

[Ursa Major]

Hi Babe, and welcome to this board.

I won't have all the answers for you, but I'll try to give you some tips. The loss in height is not a good sign, it looks like you may have developed osteoporosis, a very common problem with celiac disease, due to malabsorption of Vitamin D, Calcium and Magnesium (and you can't absorb Calcium and Magnesium without Vitamin D). I suggest you ask your doctor to send you to have a bone density scan done.

Also, you need to be tested for vitamin and mineral deficiencies, specifically iron, vitamin D, vitamin K, potassium, calcium, magnesium, so you know what you need to supplement with.

You might have other intolerances besides dairy and gluten. I find that the nightshade family, specifically potatoes, will cause bloating, gas and diarrhea in me. Also, all grains do that for me as well, and eggs. Check my link on lectins to find all about that problem. Lectins will also cause me to have back pain and cramps.

Have you checked all your personal care items for hidden gluten? Check your shampoo, conditioner, lipstick, lotions, soap etc. for things like wheat germ oil, oat bran and barley extract, as well as vitamin E (it's most often derived from wheat germ oil). Also, you need to replace your toaster (or buy your very own one if you have other people in your house eating gluten bread), as well as wooden cutting boards, wooden spoons, plastic colander and scratched non-stick cookware. The reason is, that it isn't possible to get all the gluten out of those.

Also, if your family eats butter, peanut butter, jam etc., and they put some on their bread, and then put their knife in to put on some more, and you then make a sandwich for yourself with it, you'll inevitably get some crumbs (even if you don't see them, they're there), and bingo, you're glutened. One crumb is too much. Meaning, you need your very own mayonaise, peanut butter, jam or whatever it is you use. Label it, and tell people they CAN'T touch it!

I'm sure I forgot a lot, but others will let you know what I forgot, I'm sure.

[thenamesbabe]

thanks ladies,

my nutritionist said cross contamination isn't usually a problem, but he was obviously wrong. we have two kitchens in our new home and i don't use the other but for storage, but tomorrow i'm going to make that my kitchen. my pots and food and utensils, etc. That nutri guy was WAY off. In fact, i've been specifically rubbing vitamin E lotion on. never even thought to look at it.

I wonder if cutting up my kids pancakes or touching them with my hands is bad? or anything with gluten, touching it?

i read on another site tonight about it getting so bad and going un diagnosed that you can get many bad things, like intestinal cancer. that scares me. how would i know!?

[queenofhearts]

Just touching your kids' food probably isn't be a problem if you wash your hands thoroughly afterwards. But if you cook for them, the flour in the air can be a problem.

Leah

Some vitamin E is derived from soy, but you do need to check!

[Ursa Major]

I wonder if cutting up my kids pancakes or touching them with my hands is bad? or anything with gluten, touching it?

i read on another site tonight about it getting so bad and going un diagnosed that you can get many bad things, like intestinal cancer. that scares me. how would i know!?

If you touch something with gluten, you have to absolutely wash your hands before you prepare your food, or eat with your hands. Your nutritionist is an idiot (excuse my language), don't bother going back to him, he knows nothing about celiac disease.

If you prepare your kid's pancakes, that is a huge problem. In fact, if you bake with normal flour, or even somebody else baking with gluten flour in your kitchen is a big problem. Some flour particles will stay in the air for up to 24 hours, and might gluten you. NOBODY is allowed to bake with gluteny flour in my kitchen. I didn't take that seriously either, until I baked a cake for my husband back in February, and was sick with diarrhea for several days after (and no, I didn't eat any of the cake ).

Why don't you just make your kids gluten-free pancakes? They might not even know the difference.

About the cancer: Yes, your risk of getting it is much higher, until after you've been gluten-free for several years, your chances of getting cancer will eventually return to being no more likely than for everybody else.

By the way, celiac disease is genetic, so, if you have it, there is a good chance that your kids could have it, too. As well as the rest of your family (parents, grandparents, uncles, aunts, brothers, sisters, nephews, nieces).

[queenofhearts]

Why don't you just make your kids gluten-free pancakes? They might not even know the difference.

This is what I do. Gluten-free flours make great pancakes since pancakes are best with low-gluten flour anyway.

[thenamesbabe]

i kept thinking that the taste of gluten free food, i would just get used to and realize, okay babe this is the foo dyou get to eat, get used to it and like it. but that hasn't happened well yet. mostly i'm just starving all the time. tired of eating rice and junk. i'm thinking about ordering from that website that makes gluten free food freezes it and ships it to you for like 35$ a day or so. just so i can feel like i'm eating again.

i tried to get my regular physician to test my 4 kids but he said there isn't a test that can give us the answer so don't bother. so i didn't get it done. two of my kids are very small framed, petite, easily bruised, and always have dark rings under their eyes, that's why i took them in to the doc thinking they wern't getting something they needed. and he told me the thing about no tests can be done.

sounds like i'm going to have to go back to the big town with all my kids. man i just feel like getting this wealth of information really angers me about my experiences so far!!!!

[AndreaB]

Another option if you have the funds is to get them tested by enterolab. If nothing else, starting off with the 2 you believe have problems. Enterolab does a stool test that is much more accurate than the blood draw. Check out enterolab's website Open Original Shared Link

If you eat meat you can eat that along with fruits and veggies, nuts, seeds, beans (if you can tolerate them), gluten free goodies....etc.

I left the vegan diet due to alleries and intolerances. My problem is recipes....there are also a lot of recipes on this forum.

Welcome.

[Rachel--24]

Hi Babe,

Welcome to the board.

Lots of good advice already. I was very sick like you....gaining up to 10 lbs. in a day and losing it just as fast. Eventually I just kept losing. Have you had a bone density test?? Sounds like you may have osteoporosis as previously mentioned. It also sounds like you've had your share of clueless docs...another similarity we share.

First, you've only been gluten-free for 6 months....it sounds like you were pretty sick before being properly diagnosed. Its going to take some time to heal. However, cheating...even once in awhile...is going to keep you from healing. I feel like your doctors didnt tell you how serious it is to stay off of gluten 100%. It is serious and yes, the risk of cancer is there. Cross contamination is also a real issue...always wash your hands after handling foods with gluten....also pet food (most contain gluten).

Your kids need to be tested. Since you've already been diagnosed your doctor should have tested them....Celiac is genetic. With your kids having dark rings and bruises I'd be very concerned. I hope you can get them all tested as soon as possible....even the ones without symptoms. If the doctor refuses find one that will test them. Your doctors dont seem knowledgable. Especially the one who said that you cant have it because you're not African American.

Celiac is more common in people of European decent...Italian, Irish, etc..

You really can learn alot from this board...its probably your best resource. I hope you stick around and learn the ins and outs. Also are you still eating dairy?? If you're still having problems....with no cheating on your diet....you might want to consider going off all dairy products while you're healing. Its very common for Celiacs to have lactose intolerance and also many Celiacs are casein intolerant. Casein is the protein in all dairy products and some have to avoid it the same as gluten.

Also I'll be having the surgery where they go in near the belly button...with the scope. They will be checking for Endometriosis...did you say they diagnosed you with this? How are they treating it?

[thenamesbabe]

Also I'll be having the surgery where they go in near the belly button...with the scope. They will be checking for Endometriosis...did you say they diagnosed you with this? How are they treating it?

[2Boys4Me]

Hi Babe, welcome to the board.

Just a quick note to say that if you are in Canada Lea & Perrins is NOT gluten-free. Only in the States. I won't bother to repeat everyone else's good advice.

The kids can be tested by a blood test. There are 5 tests in the panel. My son only had two but they were overwhelmingly positive. The only concern about testing is that is children under 5 (I think) it can be unreliable. Many members will tell you they saw a dramatic improvement in their kids right after starting them on a gluten-free diet. Many members and some doctors agree that improvement on the gluten-free diet is pretty much a confirmaton of a gluten intolerance if not celiac.

Good luck!

[Rachel--24]

I was diagnosed with endometriosis in the beginning of the year by my GYN. He said there were many options for me but right now he wanted to wait till i was older. I wanted it all taken out because my monthlys are horrid! The cramping is so severe i take several darvocet and i'm knocked out all day or i just can't cope. my DH knows that the first day of my monthly he will be totally in charge. i can't even walk, the pain is that bad on that day. but my doctor wants to wait because he's hesitant about doing a hysterectomy on someone so young until it's just necessary. well i think it is. so as of right now, absolutely nothing. my paps keep coming back abnormal tho. that's weird to me.

Thanks for the info Babe.

I dont know if I have this but they're gonna look for it when I have the surgery. I definately dont have the pain you're describing. That must be awful. Sorry you have to go through all this all at once.....hopefully things will improve after you've been strictly gluten-free for awhile. I would not be surprised if you found the cramping got better after you were 100% off gluten for awhile.

[Guest nini]

endometriosis is nothing to sneeze at... meaning the pain and distress from it can be very debilitating. I had Laparoscopic surgery (where they go in through the belly button) to remove it. The Dr. used lasers to clean up all the adhesions and scar tissue in there. They told me it might come back and sometimes my cramps are so terrible, I'm convinced they have, but as long as I'm 100% gluten-free then I seem to be pain free.

Cheating at all is very detrimental to your health, you know this, as well as cross contamination. You have to be so very careful.

As far as the height loss, Def. get tested for Osteoporosis. It is VERY common among Celiacs and if you have it, better to know now while you still may be able to do something about it.

As far as getting your kids tested is concerned, try Enterolab, don't even mess with other Dr.s, sounds like you just keep running into a bunch of lu lus that don't have a clue about Celiac. If you can't afford Enterolab, it won't hurt anything to TRY THE DIET with the kids. Positive dietary response is the most valid diagnostic tool anyway and it would be much easier on you if the entire household was gluten-free so that you don't have to worry about cc in your own home. (I know not as easy as all that, my hubby still eats gluten) But if you are preparing meals, there is no reason you should have to make separate gluten meals for everyone else while you eat gluten-free. If you get your entire household gluten-free, keep the kids gluten-free for at least 3 months (even at school... send lunches and snacks) then after that, let them try gluten outside of the house and see if they react to it.

If you haven't already gone to my website and downloaded the newbie survival kit, please do so. The link is in my signature below. Once you click on it, just scroll to the bottom of the page for the link that says Newbie Survival Kit.

[happygirl]

babe-welcome to the board. you will quickly learn that most people on this board know more than the average doctor and nutritionist!

have you tried tinkyada pasta? it is a gluten free pasta that almost everyone on this board LOVES. we serve it to guests and no one knows the difference. they sell it at some grocery stores, health food stores, and you can order it online.

where are you located? sometimes board members can recommend local drs who are decent.

xoxo

[evie]

i kept thinking that the taste of gluten free food, i would just get used to and realize, okay babe this is the foo dyou get to eat, get used to it and like it. but that hasn't happened well yet. mostly i'm just starving all the time. tired of eating rice and junk. i'm thinking about ordering from that website that makes gluten free food freezes it and ships it to you for like 35$ a day or so. just so i can feel like i'm eating again.

i tried to get my regular physician to test my 4 kids but he said there isn't a test that can give us the answer so don't bother. so i didn't get it done. two of my kids are very small framed, petite, easily bruised, and always have dark rings under their eyes, that's why i took them in to the doc thinking they wern't getting something they needed. and he told me the thing about no tests can be done.

sounds like i'm going to have to go back to the big town with all my kids. man i just feel like getting this wealth of information really angers me about my experiences so far!!!!

Hey Babe; Welcome, welcome. Stick with us and you will learn a lot here, we have the experts!! We have so many people who know more than the Dr's and all the "experts". haha when you know you have celiac and gluten gives you problems the meat, veggies, fruits and occasional alternate grains and flours taste pretty good. you just learn to eat diferently and not expect to eat as much bread or such as often.

Also I am wondering if you might want to give the gluten diet (stick with it ver closely) a longer trial before going for surgery. so many have had good luck/ problems like that being better after gluten gone. I know a lot of mothers send gluten free foods to school with their children and going to a gluten free kitchen would make it easier for you to stay away from it. Rest of your family could get tested by entero lab , does not matter there. How long has it been since you were tested and went on gluten free foods. Just giving you a few suggestions, hoping everything works out for you soon, no fun to be sick!! I went from Dr. to Dr. for over 20 years trying to find an answer to my problems, finally got lucky but had to get close to life and death situation first!! I am getting better after diet for 6 months. Hang in there, it works!!

let us know how things go for you, we care, we can be a sounding board. evie

[oceangirl]

Hi Babe, welcome to the board.

Just a quick note to say that if you are in Canada Lea & Perrins is NOT gluten-free. Only in the States. I won't bother to repeat everyone else's good advice.

The kids can be tested by a blood test. There are 5 tests in the panel. My son only had two but they were overwhelmingly positive. The only concern about testing is that is children under 5 (I think) it can be unreliable. Many members will tell you they saw a dramatic improvement in their kids right after starting them on a gluten-free diet. Many members and some doctors agree that improvement on the gluten-free diet is pretty much a confirmaton of a gluten intolerance if not celiac.

Good luck!

Hello, Babe

Welcome to Board. Everyone gave you the great advice, so, please, get the celiac blood panel done for your kids and, plase, find a doctor familiar with celiac! (Probably easier said than done.) Better health to you soon!

lisa