Looking For Advice On Symptoms

[happygirl38]

Hey everyone..I've been reading some posts here this evening as I'm trying to find out what is going on with me. I wanted to post my symptoms and see if anyone here can relate to them. I'm going crazy trying to figure this out.

I weigh 120, after losing an unhealthy 30 pounds. An I must admit, it's felt great. But for the last few months things have been happening that just aren't normal for me. To make this as short as possible, here is a list:

major bloating of stomache after eating, even when I wake in the morning stomache isn't flat as it should be and my middle area is larger then usual.

stomache will gurlge after eating

edema of legs and ankles, on and off, but on a water pill for it

anemia, pale and face breakouts

fatigue

joint pain, mainly elbows

don't sleep well

either D or C, i never seem to be regular

I have hypothyroid, have for years

my equalibrium is off, go through dizzy spells and disorientation, fog quite often

I'm probably forgetting something...but my largest complaint is the stomache. I can't wear my usual clothes and my jeans fit too big every where because Ihave to have them big enough for my waist/stomache region.

Could someone please tell me their opinion on if they think this all sounds like Celiac? An how in the world do I begin going gluten free? Sorry if that sounds stupid. I have spent my whole life eating what ever I wanted, and LOVE food. I've never had to be careful.

Thanks for your time....and my heart goes out to everyone here who has had to make life long changes in their eating habits.

shelly

[CMCM]

Hey everyone..I've been reading some posts here this evening as I'm trying to find out what is going on with me. I wanted to post my symptoms and see if anyone here can relate to them. I'm going crazy trying to figure this out.

I weigh 120, after losing an unhealthy 30 pounds. An I must admit, it's felt great. But for the last few months things have been happening that just aren't normal for me. To make this as short as possible, here is a list:

major bloating of stomache after eating, even when I wake in the morning stomache isn't flat as it should be and my middle area is larger then usual.

stomache will gurlge after eating

edema of legs and ankles, on and off, but on a water pill for it

anemia, pale and face breakouts

fatigue

joint pain, mainly elbows

don't sleep well

either D or C, i never seem to be regular

I have hypothyroid, have for years

my equalibrium is off, go through dizzy spells and disorientation, fog quite often

I'm probably forgetting something...but my largest complaint is the stomache. I can't wear my usual clothes and my jeans fit too big every where because Ihave to have them big enough for my waist/stomache region.

Could someone please tell me their opinion on if they think this all sounds like Celiac? An how in the world do I begin going gluten free? Sorry if that sounds stupid. I have spent my whole life eating what ever I wanted, and LOVE food. I've never had to be careful.

Thanks for your time....and my heart goes out to everyone here who has had to make life long changes in their eating habits.

shelly

I experienced most of your symptoms....and finally got scared and had to figure out my problem after I had an extreme dizziness episode that appeared to be related to eating a LOT of gluten items over about a 12 hour period. Getting gluten out of my diet changed everything for me, and since I wanted something more definite than dietary response, I went to Enterolab.

You could be celiac, or at least, gluten sensitive. You have a couple of choices:

1. Easiest is to do a 100% gluten free diet for at least a couple of weeks and see if your symptoms diminish or go away entirely. Longer than 2 weeks would be even better. If you get better, you kind of have your answer. If nothing changes, you need to search in other areas for possible reasons for your symptoms. But if you want a definitive answer, do #2 below.

2. You could get a testing panel at Enterolab....they send a test package, you return it to them with a stool sample. The best of their tests is the complete panel, which tests for antibodies, malabsorption, a gene test to see if you have the celiac/gluten genes, and they throw in a casein sensitivity test (many celiacs are also casein sensitive...this can cause similar symptoms to the gluten). Cost is $369, you get your results in about 2 weeks. Their website is www.enterolab.com, and there is a lot of information there to read, too.

You said you lost 30 lbs....was this because you were trying to lose weight, or was it out of your control and you just lost the weight?

In any case, you are smart to take charge of finding out for yourself. Most doctors are clueless about this, and you will spend far more than $369 doing a lot of tests and doctor visits while they scratch their heads with your symptoms and possibly prescribe all sorts of expensive meds that really won't help you if you are celiac.

[happygirl38]

I experienced most of your symptoms....and finally got scared and had to figure out my problem after I had an extreme dizziness episode that appeared to be related to eating a LOT of gluten items over about a 12 hour period. Getting gluten out of my diet changed everything for me, and since I wanted something more definite than dietary response, I went to Enterolab.

You could be celiac, or at least, gluten sensitive. You have a couple of choices:

1. Easiest is to do a 100% gluten free diet for at least a couple of weeks and see if your symptoms diminish or go away entirely. Longer than 2 weeks would be even better. If you get better, you kind of have your answer. If nothing changes, you need to search in other areas for possible reasons for your symptoms. But if you want a definitive answer, do #2 below.

2. You could get a testing panel at Enterolab....they send a test package, you return it to them with a stool sample. The best of their tests is the complete panel, which tests for antibodies, malabsorption, a gene test to see if you have the celiac/gluten genes, and they throw in a casein sensitivity test (many celiacs are also casein sensitive...this can cause similar symptoms to the gluten). Cost is $369, you get your results in about 2 weeks. Their website is www.enterolab.com, and there is a lot of information there to read, too.

You said you lost 30 lbs....was this because you were trying to lose weight, or was it out of your control and you just lost the weight?

In any case, you are smart to take charge of finding out for yourself. Most doctors are clueless about this, and you will spend far more than $369 doing a lot of tests and doctor visits while they scratch their heads with your symptoms and possibly prescribe all sorts of expensive meds that really won't help you if you are celiac.

Thanks Carole, for your reply. My first real bad dizzy spell ended me in the ER, as I was also having chest and arm pain and thought I was having a heart attack. Very scary. I thought I was going to pass out. Couple of weeks ago I had a nother real bad one while driving. Bad enough that my periphial (sp) vision was gone and it felt like everything was fading away. Not enjoyable.

I lost the weight on purpose. My doc had ran a cholesterol test and found I was high enough to use a restricted diet. I have two boys and the last thing I want is to fall over from a heart attack. So I started walking 2-4 miles 5 days a week and watching what I ate. It took nearly a year to lose it so it wasn't falling off. Although I found myself a bit ago down to 118 and wasn't trying to lose more. Even when I ate extra, I couldn't seem to gain any of it back for quite some time.

I'm going to try the gluten-free diet and see how I feel. I'm going to fast today and then start it tomorrow. Where is the best place to learn about the foods that are gluten-free? Also what is casein? I have alot of research to do. Just started this last night!! Thanks again.

Shell

[CMCM]

Thanks Carole, for your reply. My first real bad dizzy spell ended me in the ER, as I was also having chest and arm pain and thought I was having a heart attack. Very scary. I thought I was going to pass out. Couple of weeks ago I had a nother real bad one while driving. Bad enough that my periphial (sp) vision was gone and it felt like everything was fading away. Not enjoyable.

I lost the weight on purpose. My doc had ran a cholesterol test and found I was high enough to use a restricted diet. I have two boys and the last thing I want is to fall over from a heart attack. So I started walking 2-4 miles 5 days a week and watching what I ate. It took nearly a year to lose it so it wasn't falling off. Although I found myself a bit ago down to 118 and wasn't trying to lose more. Even when I ate extra, I couldn't seem to gain any of it back for quite some time.

I'm going to try the gluten-free diet and see how I feel. I'm going to fast today and then start it tomorrow. Where is the best place to learn about the foods that are gluten-free? Also what is casein? I have alot of research to do. Just started this last night!! Thanks again.

Shell

I really suggest starting with just plain, ordinary foods you cook yourself. Lean meats, fish, fresh or frozen vegetables, fruits without added sugar. Lots of water. Doing this will get all the gluten out of your system and allow things to calm down. Casein is the protein in milk, and intolerance to gluten often goes hand in hand with intolerance to the milk protein, which is apparently similar enough to cause some of the same problems. Other people are simply lactose intolerant....lactose is the sugar in milk, and for some people, over time without gluten, they can later do fine with the lactose in their diets. If you are casein sensitive, it will always be a problem for you.

Later, you can learn about all the gluten free foods. I had trouble with them since I am early in the healing process, so I'm not eating them at all right now (I'm talking about the various brads, crackers, cookies, cakes). And in the future, even if I do eat them, it will always be in limited amounts and not every day because they really aren't good for you...lots of sugar, starches, calories. You just can't go wild with them and expect to keep your weight normal. Sad fact of life!

For reading, I really suggest you get "Dangerous Grains" and "Wheat Free, Worry Free". Both excellent books that will teach you a lot about celiac disease, gluten, dairy, and other sensitivities and how to deal with them. I got mine on Amazon, $10 each.

The important thing here is to not be passive.....go out there and get the information you need. And you can find out a lot here, too!

[julie5914]

Sounds just like me before diagnosis (except I wish I were 120). You need to be on gluten to be tested if you want to be tested. If you do want to be tested, I would just be real straight-foward and firm about it. "I want the blood test for Celiac." Decide from there if you want endoscopy.