Why Do Some People With Celiac Disease Look So Healthy And Other's Don't

[mattathayde]

Hi I'm new to this site. For the last 14 years have had different bouts w/colon problems, was diagnosed w/ IBS,after colonoscopy. Still have colon probems on an off, went for food allergy blood test and found out allergic to wheat, diary, soy, etc. Never heard of celiac different doctors didn't tell me about it. Most said it was mostly due to "stress".....previously held executive positon for a long time, plus many major health problems with two adult children (heart, bone disease,etc). It seems no matter what I tell them about my colon problems they go back to too much stress).

After researching your questions/replies, it surely seems that I have celiac along with the food allergy. My problem is:

No diary, No soy, No wheat, rye, barlely, oaks.

I went shopping yesterday, not much out in the local supermarkets. Right now I have Almond Milk (unsweetened), smoked turkey, indian bread (lunch) or corn flakes, banana and strawberries. For dinner each night I have a turkey t,.v. dinner, sponge out the gravy w/scott towel....add carrots, green beans, the dinner has mashed pototoes. I eat cantalope on and off to get in more fruit. In the morning I eat a pc. of cornbread (I make w/almond milk) yes it has wheat, but it doesn't seem to bother me too much. Any ideas for breakfast?????

Again, I'm going for a food allergy test. When you get the booklet back showing all the different foods your are allergic too it is amazing we are not all sick w/something.

I am a seeker for good health and am amazed that the doctors cannot tell you really what is wrong, it seems like a guessing game for them.

Can any one help with what tests you "really" can take to find out if you do have celiac, or is it a combination on IBS, food allergeries?

the tests are blood (you have to be eating gluten) and then a biopsy of your intestine.

if you want to go gluten-free here is my response to your food choices:

im not sure what the india bread you eat has in it but that might still have gluten, the cornflakes probably are still glutened unless you are buying a gluten-free version, sponging out the gravy to take the glutened part out doesnt work, and the corn bread even though you dont notice it bothering you its not helping at all and might not hit you until later when you eat other stuff.

-matt

[Northern Celiac]

I have been on the celiac diet less than 1 year now. I see so many people with celiac disease on television and etc. Everyone looks so healthy and they seem to be a great weight also.

Someone people here seem to have gained weight with celiac disease and others lost weight.

I have always been a skinny girl.. I am on the losing end.

It is hard to maintain this lifestyle at times without the occassional gluten accident..

I have tried to bake my own breads and things... everything turns out terrible.

I wasn't a great cook pre-celiac disease....

When, does it get easier????

Hi Skinny chic,

I am going through the same thing as you are at the moment. I was just diagnosed and am having a hell of a time with the transition. Eating the foods isn't the problem, there was just so much damage before I was diagnosed that my body is repairing itself. As for being skinny, I know how you feel, I look like a walking scarecrow and hate whats happened to me. But as one of the books I have says"you are now in control of your own destiny, so you must have courage"

[peacebwu]

the tests are blood (you have to be eating gluten) and then a biopsy of your intestine.

if you want to go gluten-free here is my response to your food choices:

im not sure what the india bread you eat has in it but that might still have gluten, the cornflakes probably are still glutened unless you are buying a gluten-free version, sponging out the gravy to take the glutened part out doesnt work, and the corn bread even though you dont notice it bothering you its not helping at all and might not hit you until later when you eat other stuff.

-matt

Hi Matt - thanks for the advice! When I looked over the "booklet" quite extensive from my blood test food allergy not only am I allergic to rye, malt, barley, wheat, but also dairy, soy, etc. etc. I called up the Lab that analyzed the test and was told that if you eat the same thing constantly, (at least two - three weeks) and your tested.... in good probability you will show positive. I was told that if everyone was tested most would be allergic to something or other. The main one is dairy, than wheat. I questioned does allergy cause the same condition as cealic and IBS, etc.

I was told that all are closely related; that it varies from person to person.

Quite honest, it's just a merry go round. I passed all this by my internest who also is a friend (highly regarded as a Dr.) and he told me to just find out "myself" what agrees w/my own system, and what does not. The colon small and large plays a big part of this. He said if you get an immediate reaction stop....if you can tolerate it....eat it. If not your body does not get the right balance of nutrients.

I don't know, it seems the more questions you ask, the different answers you get. No one really wants to state this is what it is!

You went thru my food list (I'm trying my best to just stay on some type of "regular" food! ) What do you eat basically??????

Again, thanks for your reply....it is appreciated! d

[mattathayde]

Hi Matt - thanks for the advice! When I looked over the "booklet" quite extensive from my blood test food allergy not only am I allergic to rye, malt, barley, wheat, but also dairy, soy, etc. etc. I called up the Lab that analyzed the test and was told that if you eat the same thing constantly, (at least two - three weeks) and your tested.... in good probability you will show positive. I was told that if everyone was tested most would be allergic to something or other. The main one is dairy, than wheat. I questioned does allergy cause the same condition as cealic and IBS, etc.

I was told that all are closely related; that it varies from person to person.

Quite honest, it's just a merry go round. I passed all this by my internest who also is a friend (highly regarded as a Dr.) and he told me to just find out "myself" what agrees w/my own system, and what does not. The colon small and large plays a big part of this. He said if you get an immediate reaction stop....if you can tolerate it....eat it. If not your body does not get the right balance of nutrients.

I don't know, it seems the more questions you ask, the different answers you get. No one really wants to state this is what it is!

You went thru my food list (I'm trying my best to just stay on some type of "regular" food! ) What do you eat basically??????

Again, thanks for your reply....it is appreciated! d

honestly i am slightly confused with all that you did and were told. ibs is not a real condition, it is what doctors say instead of"well we dont know whats wrong with you and we dont know enough about digestive stuff to be able to figure out what is setting you off"

if i were you i would try to go gluten free, not gluten light but gluten free. if you get no results from it at all then ok what ever but if you get any results its probably one of the things thats is messing with you

as to what do you eat, any thing that doesnt have gluten in it, just dont eat baked goods, you will have to cut out a lot of stuff and just deal with not having it but you just have to get over it, after a few weeks you will get used to it.

-matt

[Crayons574]

I am an overweight celiac as well (why couldn't I get the weight loss symptom!) Any ways people tell me the same thing that I don't look sick. Untill I actually don't feel good. Then they can tell. I look "toxic" as my father puts it, my eyes are glossy, I am not bright and cheerfull and my face looks paler (I am already pale to begin with) but it's strange....I always felt sick and I thought I looked sick. But I guess it's different for everyone.

have you had your thyroid checked? this sounded like me and i was diagnosed with hypothyroidism. i am now taking thyroid hormones and finally feel great.

[darlindeb25]

I haven't been here for a while, this is an interesting thread. I was the fat, sick celiac. As someone else said, our bodies go into overdrive and keep whatever it can stored in fat cells. When I went gluten free 9 years ago, I lost 60#. When I was my sickest, I was my heaviest. Now, whenever I get glutened, or something else goes haywire, I gain. It's very discouraging, yet it's my body's survival mode.

I think there's a point of no return for a small portion of celiacs who went very long getting diagnosed.

I agree with Deb...I think some of us were sick for so long, and so much damage was done, there comes a point of no return. We get some better, yet never fully better. That's why we have so many other intolerance's.

[mamaesq]

I was also at my heaviest when I was diagnosed, despite trying everything possible to lose weight. Once I went gluten-free, the weight started coming off immediately. I have lost close to 30 lbs in nine months. I would love to lose another 10, but if I don't, I'm still happy with how I look and feel. I never EVER thought I would feel this good again.

[LBethanyC]

When I cut gluten out of my diet, I lost 14 pounds in two weeks, and it continued from there. I was never a big girl, but I had bloat weight on my tummy. Now I'm becoming toned and a healthy weight. But the weight loss is very noticeable. Before I went gluten-free, I excercised constantly, but it was barely noticeable. Now, it makes a difference.

I always used to have colour in my cheeks, and look healthy. But in the past year or so, since my symptoms have REALLY gotten horrible, I have been told, and noticed, that I look pale and sickly. I'm ALWAYS tired, and just look it.

I recently moved into my own apartment in the city, and began cooking for myself, as opposed to eating my mother's cooking constantly. I eat balanced gluten-free meals, and have begun to feel a lot better in terms of my symptoms, except for the times that I have a flare-up. The fatigue is horrible right now, but I am looking into what supplements to take, and trying to make sure my diet includes the proper foods. Anyway, my roommate told me last night, and I also noticed, that since I moved over a month ago, a bit of the colour has returned to my cheeks, and I look a lot better most days. I think, for me, it has a lot to do with my diet, and making sure that I'm eating healthy and gluten-free. For example, last night I accidently ate some gluten, and had a bad reaction. Later, my roommate said I had dark circles under my eyes, and I looked pale. So for me, it seems to be directly linked to what I'm eating, and not just the illness in general.

Things are different for everyone, anyway. I hope I helped a bit .