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ptotheoop

New...scared Of Gaining Weight

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Hi. I'm new here. I just found out my test results today. I have a severe gluten allergy...and I've never know it becuase I guess instead of getting the more common symptoms I had another symptom that was misdiagnosed. My allergic reaction to gluten was excessive sweating. I always assumed I had overactive sweat glands so I was doing electric shock therapy etc ...which helped but steered me away from knowing what was truly wrong.

Anyway, right now I am 5'4, 120 lbs. I think I look good now. I like this weight. Sometimes I think I have some extra fat, I wouldn't mind losing 5 lbs. Well the doctor told me that sometimes people gain weight once they eliminate gluten from their diet, he also said that I might gain weight but it would be HEALTHY weight. This majorly freaked me out. I was reading through the forum...and it seems like people either lose weight or gain weight...its all different.

However, what if you are at a healthy weight for your height already? I checked the BMI calculator and everything and I am like...20-21. So I must be getting adequate nutrients unlike a lot of people.

I don't have celiac disease yet...I have about 5 years until I could possibly get it (good thing I caught the allergy on time) and I think I can gain weight easy if I want. So if don't have issues with gaining weight, not overly thin etc. Is it likely that I will gain extra weight when taking the gluten away?

When I was a kid I was very chubby, got made fun of etc. I didn't get thin until I was 14...I weighed like 100 lbs then and slowly gained weight each year up until the weight I am now. I like being thin, I can't NOT be thin. I think its very possible for me to turn annorexic if I start gaining weight because I just have become accustomed to being thin and I still am scarred from being made fun of.

I don't want to get celiac disease and have surgery to remove a portion of my intestine so I will eliminate the gluten...I guess I have no choice :(

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Guest cassidy

If you have a gluten allergy, then you need to take gluten out of your diet.

I would not be concerned about gaining/losing weight. For the most part, I think the weight gain is based on what type of gluten-free foods people choose to eat. Yes, some people have thyroid issues or other issues but if you are otherwise healthy, the gluten-free diet isn't a fattening one. Lean meat, veggies and fruits are all gluten-free. There are also tons of gluten-free donuts, cookies and things like that. If you see the new diet as a way to start eating donuts everyday, then you will probably gain weight, but if you stick to healthy, non-processed foods then there is no reason you would gain weight.

Also, eating out is challenging so I know I eat out a lot less than before. I would always eat healthy at home but in a restaurant you can't tell if they add butter to everything or exactly how many calories you are consuming. I would think this would help people not gain weight because they can't just pick up fast food on the way home or go out for a pizza all the time.

You may or may not lose weight while you are finding new things to eat and your body is healing, but I don't think that is as much of a concern for you.

I'm curious about what you said about not haing celiac but you may get it in 5 years or so? I've never heard anything like that before, and if that is something your doctor told you, then I wouldn't call him an expert on celiac or gluten-free, so you might not put much stock into what he said about people gaining weight.

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I had a perfectly healthy BMI before I was diagnosed - I was even a bit on the chunky side. In the six weeks after I was diagnosed, I lost 30 lbs, which scared the crap out of my doctors. Once we figured out that I no longer respond to my body's conventional hunger signals and I went on a calorie-controlled diet instead of the "eat when you're hungry" theory, I regained about 15 lbs. My weight fluctuated by about 10 lbs either way for the next couple of years while I mastered the diet, but I'm now a very healthy 140lbs (I'm about an inch taller than you are and, as an ex-athlete, have quite a lot of muscle mass) which pleases my doctors (they still start to panic if I lose weight). You may find that you gain weight to start with because you continue to eat your normal portions: it turns out that I was consuming about 3000 calories a day before my diagnosis, and was still hungry frequently. Now I eat around 1500-1800 calories a day.

If I were you, I would have the celiac blood panels run by your doctor because he or she seems to be a bit confused (make sure you get a copy of the lab results and we can help you decipher them here). celiac disease is not something you 'develop' from an allergy, because it isn't an allergy - it is a systemic genetically inherited autoimmune disorder akin to diabetes, with a whole host of associated complications (just like diabetes), including several cancers, skin disorders, depression, diabetes and neurological problems (just to mention a few). If you get a diagnosis of celiac disease, ask to be referred to a nutritionist with experience in advising celiac disease patients, who can help you work out a diet that will maintain your weight at healthy levels. Explain, if necessary, that you think you may be at risk of developing anorexia because you have issues with your body image.

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Well the person I went to is a nutritionist...so I guess he's not really a doctor. He showed me a lab result paper that had a graph and showed the levels of cortisol through the day etc. Originally I was being tested to see how advanced my adrenal fatigue is. The nutritionist pointed at the bottom of the page, there were a bunch of numbers next to the word gluten and it said something like 'allergy severe'. The nutritionist told me that if I continued to eat gluten my adrenal glands would get more messed up and that I could end up with celiac disease in about five years or so. Practically my whole family sees this nutritionist and he's helped a lot of people so I'm guessing he must know a lot about these types of things, and he said he had patients with these problems before. For some reason he said that I didn't have celiac now...I'm guessing because I don't have problems keeping food in my system or don't have any of the other major problems.

I guess it makes sense that if you just eat healthy and don't eat too much of the gluten free products or eat out all the time and stuff everything should be okay. My sister told me she was put on a diet once by the same nutritionist a few years ago, and she had to take gluten out and she lost like 30 lbs from it and dropped to a healthy weight. So I am less worried now :)

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An allergy is not the same thing as celiac. One does not progress into the other, although it's possible to have both at the same time. My daughter and I both have food allergies. She to gluten, among other things. You'll be happy to know that both of us immediately LOST weight after we stopped eating the foods we were allergic to. Not only did we slim down but we felt a ton better too! The first two weeks were the toughest for me because I did not feel better right away. Then again, I'm older and have been eating those foods for much longer. Daughter felt better within the first 24 hours after stopping the allergens then got really sick for a day at about the 2 week mark due to detox. For me, I didn't notice a difference until the 2 week mark and then not only did I suddenly look and feel better but I'd lost 12 pounds seemingly overnight.

People who have celiac often lose weight due to malnourishment. But allergies can cause yout to gain weight because they can make your tissues retain fluid. You might be very surprised what will happen to you if you lay off the gluten! :P

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I've heard a lot about how eating a food you are allergic to actually makes your body hold onto weight instead of eliminate it. And that often when you remove the offending food you lose weight because your body knows how to deal with what it's been given. There's even a book on it, I think, I canno tremember the title.

I was also told by a person on another forum I frequent said that you can be malnourished but be overweight. That when your body doesn't know what to do with something, it stores it as fat.

That doesn't mean you CAN'T gain weight, but I don't see a reason why you'd HAVE too.

:)

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there is no way this guy could know that you will get celiac disease in 5 years. there is also no way that he could know that you don't have celiac at this time unless he ran the celiac blood tests on you----but since he is not a doctor, i'm sure he didn't run them. and, is he the one that told you that if you got celiac you would end up with surgery to remove part of your intestine????

this guy has absolutely no idea of what he is talking about----he doesn't know celiac.

if you have a severe allergy to gluten, i would hightly recommend that you go to a real doctor and get a celiac blood test run. if the doctor doesn't know already, ask to have a total IgA serum test and a tissue transglutaminase IgA test.

AND----stay away from that nutritionist!!!!


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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if you're healthy and have the correct calories for your body and activity, you won't gain fat. in addition, celiac is when you are aren't absorbing - if you don't have celiac, you won't gain the weight as you start absorbing again (because you don't need to worry about that!). take care of your body and listen to it -if you have symptoms that require you to stop consuming gluten, then do it! :)


Gluten-free, Vegan

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Well the person I went to is a nutritionist...so I guess he's not really a doctor. He showed me a lab result paper that had a graph and showed the levels of cortisol through the day etc. Originally I was being tested to see how advanced my adrenal fatigue is. The nutritionist pointed at the bottom of the page, there were a bunch of numbers next to the word gluten and it said something like 'allergy severe'. The nutritionist told me that if I continued to eat gluten my adrenal glands would get more messed up and that I could end up with celiac disease in about five years or so. Practically my whole family sees this nutritionist and he's helped a lot of people so I'm guessing he must know a lot about these types of things, and he said he had patients with these problems before. For some reason he said that I didn't have celiac now...I'm guessing because I don't have problems keeping food in my system or don't have any of the other major problems.

I guess it makes sense that if you just eat healthy and don't eat too much of the gluten free products or eat out all the time and stuff everything should be okay. My sister told me she was put on a diet once by the same nutritionist a few years ago, and she had to take gluten out and she lost like 30 lbs from it and dropped to a healthy weight. So I am less worried now :)

Yeah, no kidding he's not a doctor. That is definitely why you need to go to a real doctor and have him do the proper testing on you. THERE IS ABSOLUTELY NO WAY this guy could know whether or not you have celiac disease without running the PROPER tests and he should NOT EVEN pretend to know it!! How does he know you'll end up with celiac disease in 5 years?? He doesn't even know whether you have the GENE for it or not!!! It would be IMPOSSIBLE for you to end up with celiac disease in five years if you don't even HAVE the gene!! Is this guy a geneticist as well as a nutritionist? How in the world could he even know that you don't ALREADY have it???

Please, go get the proper tests done by a doctor who knows what celiac disease and gluten allergies and gluten intolerances are. You have NO IDEA what damage you could be doing to your body everyday. You think that poor self-image will be a problem for you if you gain weight??? That will be nothing compared to what you may go through, how sick you may become or what other health problems or diseases you may end up with if you follow this guys "diagnosis". You sound young but you found your way here so you're not completely helpless. Do some research on celiac disease and you will see how serious it is. Gaining weight will be the last thing on your mind after getting some bona fide information....

GO GET TESTED!


Lauralee

Diagnosed Celiac's March/05

Diagnosed Lyme Disease March/07

2 out of 4 children gluten intolerant

husband not tested

whole family gluten free

If it's not made in a dedicated gluten free environment, it's NOT gluten free...it's "gluten not intentionally added!!!"

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I was at a fairly healthy weight when I began eliminating gluten from my diet, although I have always struggled with a few lbs. I found that I lost some weight and have kept it off easily - I think just because I can't just reach for whatever is available - I have to plan what I eat, read lables, etc.

Although I do agree that there is a lot of gluten free junk food available out there, I think eating gluten free has made me pay so much more attention to what I am putting into my body, that I am eating healthier all around - which should make it easier to maintain a healthy weight, right?

Sheryll

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Hi. I'm new here. I just found out my test results today. I have a severe gluten allergy...and I've never know it becuase I guess instead of getting the more common symptoms I had another symptom that was misdiagnosed. My allergic reaction to gluten was excessive sweating. I always assumed I had overactive sweat glands so I was doing electric shock therapy etc ...which helped but steered me away from knowing what was truly wrong.

Anyway, right now I am 5'4, 120 lbs. I think I look good now. I like this weight. Sometimes I think I have some extra fat, I wouldn't mind losing 5 lbs. Well the doctor told me that sometimes people gain weight once they eliminate gluten from their diet, he also said that I might gain weight but it would be HEALTHY weight. This majorly freaked me out. I was reading through the forum...and it seems like people either lose weight or gain weight...its all different.

However, what if you are at a healthy weight for your height already? I checked the BMI calculator and everything and I am like...20-21. So I must be getting adequate nutrients unlike a lot of people.

I don't have celiac disease yet...I have about 5 years until I could possibly get it (good thing I caught the allergy on time) and I think I can gain weight easy if I want. So if don't have issues with gaining weight, not overly thin etc. Is it likely that I will gain extra weight when taking the gluten away?

When I was a kid I was very chubby, got made fun of etc. I didn't get thin until I was 14...I weighed like 100 lbs then and slowly gained weight each year up until the weight I am now. I like being thin, I can't NOT be thin. I think its very possible for me to turn annorexic if I start gaining weight because I just have become accustomed to being thin and I still am scarred from being made fun of.

I don't want to get celiac disease and have surgery to remove a portion of my intestine so I will eliminate the gluten...I guess I have no choice :(

I just wanted to tell you that either you have an allergy to gluten or Celiac Disease, but they are too way different things. Allergy to gluten is just an allergy were if you run into you will have yucky symptoms. Celiac Disease is an Auto Immune Disease where it actually kills off your body and causes lots of other health problems. I just wanted to mention that because I don't think you doctor is very educated on Celiac Disease. If I were you too make sure that it is an allergy and not Celiac Disease. I would ask your doctor for a celiac Disease blood test and maybe even an endoscopy and a Colonoscopy.

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Hmm...After thinking about my apointment to the nutritionist... I remember that I asked him what where the symptoms of celiac disease and he said I had all of them practically...so maybe he meant that I did have it? I could tell that he was trying not to scare me. I'm thinking that perhaps he meant that if I continued to eat gluten I would end up like one his patients who needed to have surgery. He threw out an estimation of when things could go downhill...ihe said five years. So I took it as just an allergy for now but after thinking about it I'm unsure. I think if I was in serious danger he would have done more tests...

I'm sure if I stick on the diet i'll heal and be okay. I don't want to have any scary tests done on my colon or whatever...that really freaks me out no matter what people say. I think I will take my chances...So far I feel a lot better on the diet and its not that hard :)

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Hmm...After thinking about my apointment to the nutritionist... I remember that I asked him what where the symptoms of celiac disease and he said I had all of them practically...so maybe he meant that I did have it? I could tell that he was trying not to scare me. I'm thinking that perhaps he meant that if I continued to eat gluten I would end up like one his patients who needed to have surgery. He threw out an estimation of when things could go downhill...ihe said five years. So I took it as just an allergy for now but after thinking about it I'm unsure. I think if I was in serious danger he would have done more tests...

I'm sure if I stick on the diet i'll heal and be okay. I don't want to have any scary tests done on my colon or whatever...that really freaks me out no matter what people say. I think I will take my chances...So far I feel a lot better on the diet and its not that hard :)

What is he talking about "his patients that needed surgery???" :blink: Celiac's cannot be corrected by surgery, don't you know that? Apparently you still haven't taken it upon yourself to do the PROPER research on Celiac's to find out what causes it, how it can affect you, how it's diagnosed and how it's treated. You also still don't get that he CANNOT tell you whether you have it or not!!! NO TEST that he performed on you would have been able to tell that!! Do you understand that???? He would merely be guessing. Do you not understand that you may ALREADY have it? It may not take five years for you to decline....it may take 5 months, 5 days or 5 minutes!!! HE HAS ABSOLUTELY NO WAY OF KNOWING. I for one would like to get this guy's number so I could give him a piece of my mind, filling his clients heads(NOT PATIENTS...HE'S NOT A DOCTOR!) with such garbage.

The tests are not scary at all. In fact Enterolab does it's testing through blood and stool samples if I am correct. What's so scary about pooping into a container??? Besides that, celiac disease is not diagnosed through colon biopsies, it is diagnosed through biopsies taken when a gastroscopy is performed. The scope takes that 5 to 10 minutes and they give you a mild sedative if you ask for one. No big deal.

I find it very interesting that you are more concerned about gaining weight and how you'll look, than you are about your health. Like I said before, do the research yourself and never mind what this guy is telling you. You have hundreds of people on this board who have celiac disease that will tell you the same thing as everyone has told you here...ditch the nutty nutritionist and get tested by a doctor that knows what they are talking about. It is important to get a proper diagnosis so you can maintain your health for the rest of your life. If you found a lump on your breast would you not go to a doctor to see what it was? This is no different, a nutritionist could not tell you whether or not you have cancer and neither can he tell you whether or not you have celiac disease.

Please get tested...for your health's sake.


Lauralee

Diagnosed Celiac's March/05

Diagnosed Lyme Disease March/07

2 out of 4 children gluten intolerant

husband not tested

whole family gluten free

If it's not made in a dedicated gluten free environment, it's NOT gluten free...it's "gluten not intentionally added!!!"

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I am concerned about my health. Okay. I just don't feel like gaining weight. Most people don't. Sure I said I would turn anorexic if I started gaining weight, but that was an exaggeration. HEALTH is 1# of course.

I DID do research on celiac, I read that you don't necissarily need surgery, medications or anything, just diet and stuff which I am doing so why take more tests if its just going to confirm that I must stick on the diet? I already know what to do, celiac disease or not. I don't see a need for tests and I don't care about getting tests done because there isn't a need for them...if there was the nutritionist would have said so. He gave my other family members stool tests, why not me? He's a strong believer in stool tests, and obviously didn't see the need for me to get one, most likely based on the questionairre I filled out and other things.

The nutritionist helped loads of people, many of my family and friends so I trust his word. I don't think he's crazy. If he is OH WELL. He didn't say for SURE when my health could go downhill...its just an estimation based on his evaluation. Can't people estimate? I'm taking my chances. I know that celiac disease is not corrected by surgery, but some people have need surgery to remove a portion of their intestine that got overly damaged. I'm going to ask more questions when I go for my next saliva test in a few months. Allergy or celiac, same procedure in dealing with it. NO need to yell people, GEEZ (well not all of you are yelling).

Who knows maybe people here are not even as informed on celiac disease as they think? People can't possibly know everything about everytyhing. Maybe it IS possible to develope celiac disease if you have an allergy. You never know. It's possibly. ANYTHING is possible. And no one can be 100% sure that someone is crazy or not without knowing them, testimonials of other people, and 304720374 more things. It's possible that people research differently than others too. What I've researched could be different from what other people have researched. It's not impossible, but unlikely that everyone looking at the same exact source for information.

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No he can't estimate something that cannot be estimated. He has no idea how much damage your body has already incurred and he has no idea whether you already have Celiac's or not. No not 'anything' is possible...an allergy cannot turn into celiac's if you don't have the gene for it, that is an IMPOSSIBILITY. So that's some research you did....People here are VERY informed about celiac's because it is what they have and you're right, no one can know everything about everything, so why do you think your nutritionist is any different? Does he have celiac's? When was the last time he attended a national celiac's convention? How many research papers has he actually read on it? Can he tell you the names of the leading researchers in celiac disease? Perhaps you should ask HIM these questions to get a better idea if he actually knows what he's talking about. And yes, by the way, I do have celiac disease, I have been to several conventions, countless speeches, MD, ND, AND nutritionist's presentations and have read so many papers on it that I have lost count. I also see an MD and a GI on a regular basis to make sure my disease is UNDER CONTROL to maintain proper health. This is why you should be tested PROPERLY.

Whatever, you keep seeing the nutritionist you believe can give you prognosis' like a real doctor.

Good Luck.


Lauralee

Diagnosed Celiac's March/05

Diagnosed Lyme Disease March/07

2 out of 4 children gluten intolerant

husband not tested

whole family gluten free

If it's not made in a dedicated gluten free environment, it's NOT gluten free...it's "gluten not intentionally added!!!"

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I'm not trying to get into a fight here. This is all I'm going to say on this topic. I just wanted to note that it is possible to have Celiac Disease without having one of the currently known Celiac genes. I believe there are several on this forum who have Celiac (biopsy diagnosed) that do NOT have the genes.


~Angie~

Gluten free since May 2004

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. I believe there are several on this forum who have Celiac (biopsy diagnosed) that do NOT have the genes.

I've actually asked this question before and as far as I know there is only one poster here who is biopsy proven celiac w/out a gene. It can happen but its not very common...only about 1-2% of Celiacs dont have one of the main genes. I tried to get answers to this question since I dont carry a gene and even though they dont believe that they've determined all of the genes associated with Celiac....it is quite apparant that more than 98% of Celiacs *do* have a gene (DQ2 or DQ8 or both).


Rachel

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I know that celiac disease is not corrected by surgery, but some people have need surgery to remove a portion of their intestine that got overly damaged.

I agree with all that you've said regarding following the diet whether its Celiac or not. If your body doesnt like it....stay away from it....its as simple as that. :)

As far as needing surgery for damaged parts of the intestines from Celiac....I've never heard of that?? :huh:

I agree with the others.....what your nutritionist is telling you about Celiac is not accurrate. If Celiac *is* a disease that you think you may have then I think its also important to have a very good understanding of what this disease is about.

The people here do have ALOT of knowledge about Celiac...about how gluten triggers the autoimmune response which leads to destruction of the villi....about how to get diagnosed properly....and about how to avoid gluten in foods by knowing how to read labels. Its all important stuff to know if you want to keep yourself healthy.

Celiac is a genetic disease so thats one important reason to know whether you have this disease or not. If you have children in the future you will want to know if this is something that they may be susceptible to.

Celiac is not an allergy and an allergy cannot turn into Celiac.....they are two completely seperate immune responses. An allergy is an IgE response to an antigen. You can be allergic to wheat but that is completely different from having Celiac Disease. Celiac is an autoimmune disease....so your body would be producing antibodies against gluten and actually causing damage to your own tissue due to this immune response.

You may or may not want to learn more about this but unfortunately your nutritionist is not very informed and is giving you false information. I think its important for us to be educated about our health and I think people here are just concerned by the information you're getting from someone that you trust with your diet and with your health.

I wont tell you to to "ditch" the nutritionist but please try to educate yourself and by doing this you might also educate him in the process. He might have good intentions but the information he's giving you is wrong. Wrong information can be harmful to your health....if not now....then possibly down the road.

Good luck with all this! :)


Rachel

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I'm not trying to get into a fight here. This is all I'm going to say on this topic. I just wanted to note that it is possible to have Celiac Disease without having one of the currently known Celiac genes. I believe there are several on this forum who have Celiac (biopsy diagnosed) that do NOT have the genes.

Yes, I know one for sure and apparently the connection may be made through the candida albicans yeast. There is a lot of research that has been available for a few years now that makes a correlation between the candida albicans yeast and an autoimmune reaction it creates that produces the gluten antibody triggering the same kind of damage to the villi that happens in people with true celiac disease. These people present with the same symptoms, intestinal damage and gluten antibodies as people with true celiac disease and are diagnosed with celiac disease, but in fact, some researchers and doctors feel that these people do not truly have the disease. They believe the cause of their symptoms and subsequent diagnosis is the yeast candida albicans. They also believe this is why some celiacs who have been on the diet for some time do not get better or respond to the diet. Unless they are treated for the candida problem, they may not recover.

Here is a quote from one of the articles:

Coeliac disease is a T-cell-mediated autoimmune disease of the small intestine that is induced by ingestion of gluten proteins from wheat, barley, or rye. We postulate that Candida albicans is a trigger in the onset of coeliac disease. The virulence factor of C albicans-hyphal wall protein 1 (HWP1)-contains aminoacid sequences that are identical or highly homologous to known coeliac disease-related alpha-gliadin and gamma-gliadin T-cell epitopes. HWP1 is a transglutaminase substrate, and is used by C albicans to adhere to the intestinal epithelium. Furthermore, tissue transglutaminase and endomysium components could become covalently linked to the yeast. Subsequently, C albicans might function as an adjuvant that stimulates antibody formation against HWP1 and gluten, and formation of autoreactive antibodies against tissue transglutaminase and endomysium.
Another article in summation says:

Now we come to what to me is the most interesting of the recent research regarding celiac. It seems fitting that the research again comes from Holland , where celiac disease was first linked to diet. Dr. Nieuwenhuizen, from the research group TNO Nutrition and Food Research, published a paper in the June, 2003, Lancet. He links celiac disease with Candida albicans. Dr. Nieuwenhuizen, knowing the actual sequence of proteins which trigger celiac disease from the published work of other scientists, had searched the databases available to him through TNO to see if the same sequence existed in other places. It turns out the identical sequence of proteins occur in the cell walls of Candida albicans. [15]

These Candida gluten-like proteins turn out to be the yeast's "hypha-specific surface protein" nicknamed Hwp1. This is the yeast's version of Velcro and allows it to attach and hang onto the endomysium in the wall of the intestine. It is also targeted by transglutaminase, the enzyme which acts on the gluten protein and serves as a target for immune antibodies. Candida species which don't have this Hwp1 protein can't attach themselves to the digestive tract. [16]

Interestingly enough, this latter article also states in it's introduction as do so many other articles on celiac disease, that it is a GENETIC disorder, hence, to have true celiac disease you need to first have the celiac disease gene. Perhaps the info above explains why some people are diagnosed with celiac disease but don't actually possess the gene for it. If you'd like more links to more articles, I'd be happy to give them to you. :rolleyes:


Lauralee

Diagnosed Celiac's March/05

Diagnosed Lyme Disease March/07

2 out of 4 children gluten intolerant

husband not tested

whole family gluten free

If it's not made in a dedicated gluten free environment, it's NOT gluten free...it's "gluten not intentionally added!!!"

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:blink: I am new to this forum but have been gluten-free for 2.5 years. It is always this hostile in here?

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:blink: I am new to this forum but have been gluten-free for 2.5 years. It is always this hostile in here?

No not at all, it's just me.

I would like everyone to know that this is my formal apology to ptotheoop for my poor behaviour towards her. I went way over the line in the way I spoke to her. I am very emotional about this issue and myself have suffered through the misdiagnosis' of many a doctor and specialist over the years who were supposed to know what they were doing and I can't stand the thought of seeing another person go through what I did. I sincerely believe that ptotheoop is getting some bad information HOWEVER I had no right to address her in the way that I did.

ptotheoop, I sincerely only wished the best for you but I chose a terrible way of showing it and I apologize. Please don't let my ignorance stop you from visiting this site in the future. It is a GREAT place to get good info, help and advice on celiac disease and not everyone acts as inappropriately as me. I SINCERELY wish you all the best in the future.


Lauralee

Diagnosed Celiac's March/05

Diagnosed Lyme Disease March/07

2 out of 4 children gluten intolerant

husband not tested

whole family gluten free

If it's not made in a dedicated gluten free environment, it's NOT gluten free...it's "gluten not intentionally added!!!"

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:blink: I am new to this forum but have been gluten-free for 2.5 years. It is always this hostile in here?

No, it's DEFINITELY not. As LL04 apologized and said that she went over the line. Thank you LL04.

This is a place for NEWBIES as well as oldies who need to come and learn about celiac. ANYONE should be able to ask ANY question without feeling attacked. Many of us, myself included, came to tis board without a clue. I was told that celiac is really rare, I couldn't possible have it, I was tested for cancer, HIV, Hepatitis ABCD, TB, YOU NAME IT. It was ugly.

But someting in my gut (no pun intended) told me to try out this dieet and lo and behold, it worked.

2, almost 3, years later, I am feeling much much better.

There is a LOT of misinformation floating around out there, even among MD's and GI's. I'm not surprised that a nutritionist would be misinformed.

Ptotheoop (great name by the way)- I am the EXACT same weight (except for the uhm 5 lbs that I gained over the holidays :unsure: ) as I was before getting sick. When I developed active symptoms, I dropped twenty pounds and could barely get out of bed. I was so thin I looked like a skeleton and people thought I was dying. I have gained back the twenty pounds and that's it.

I understand your fear of gaining weight as I was VERY chubby as a child and made fun of. we also live in a world where thin=happy and sexy. Weight is a difficult issue for many people. But... if you stick to eating what you eat now, minus the gluten (have rice instead of pasta, etc) plenty of fresh fruits and veggies and lean meats if you are not vegetarian, you will probably be fine!


***************************

Beverly

Gluten free since 2005

In the midst of winter, I found there was within me an invincible summer.

Albert Careb

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Anyway, right now I am 5'4, 120 lbs. I think I look good now. I like this weight. Sometimes I think I have some extra fat, I wouldn't mind losing 5 lbs. Well the doctor told me that sometimes people gain weight once they eliminate gluten from their diet, he also said that I might gain weight but it would be HEALTHY weight. This majorly freaked me out. I was reading through the forum...and it seems like people either lose weight or gain weight...its all different.

However, what if you are at a healthy weight for your height already? I checked the BMI calculator and everything and I am like...20-21. So I must be getting adequate nutrients unlike a lot of people.

ptotheoop,

Welcome to the board. I personally don't care if you have a gluten allergy, intolerance, Celiac disease or some other reason for avoiding gluten. You are welcomed here on the board and there are a lot of us here who have lots of experiences to share.

I wanted to share my experience with the weight issue. I initially lost 5lbs when I started the gluten free diet, and I believe that was from the swelling in my intestines. When I get glutened I almost instantly gain a few pounds until the swelling goes down. I was 5'2, 180lbs when I started the diet back in 2002.

After that 5lbs I didn't lose another ounce for years. I've been on the diet for over 4 years now and I have only recently been able to lose weight. I was overweight since having my kids and because of the gluten in my diet I was not able to lose any of the excess. I am currently 143lbs. I have lost over 30lbs since the end of September and still need to lose about 13 more to be at my first "goal weight" that I set for myself. (I would eventually like to be back to 120, but will work on that last 10lbs at a slower pace, and not stress if I don't stick to my weightloss meal plans so strictly.)

My point here is that you will not necessarily gain or lose anything. If you choose healthy options most of the time and occasionally have some gluten free treats, then you should be fine. If you find that you start gaining, just look for the things in your diet that might be high calorie and low nutrient and eliminate that. I did not gain weight and believe me I have tried my share of gluten free goodies!! But the news about all the pre-packaged stuff is sort of a mixed blessing, they are expensive so we don't eat them as often! :rolleyes:

When I was a kid I was very chubby, got made fun of etc. I didn't get thin until I was 14...I weighed like 100 lbs then and slowly gained weight each year up until the weight I am now. I like being thin, I can't NOT be thin. I think its very possible for me to turn annorexic if I start gaining weight because I just have become accustomed to being thin and I still am scarred from being made fun of.

I could have written this up to age 22 when I became pregnant with my first child. I was also a chubby child and made fun of. I started to thin out when I became a teenager and enjoyed being thin until after I was married and pregnant. I have certainly had a very hard time accepting being heavy these past 13 years, but as I said, I am now able to lose weight and enjoying getting thin again. And I eat gluten free everyday! You do not have to gain while eating gluten free. ;)


~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

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Guest CarBear
Hi. I'm new here. I just found out my test results today. I have a severe gluten allergy...and I've never know it becuase I guess instead of getting the more common symptoms I had another symptom that was misdiagnosed. My allergic reaction to gluten was excessive sweating. I always assumed I had overactive sweat glands so I was doing electric shock therapy etc ...which helped but steered me away from knowing what was truly wrong.

Anyway, right now I am 5'4, 120 lbs. I think I look good now. I like this weight. Sometimes I think I have some extra fat, I wouldn't mind losing 5 lbs. Well the doctor told me that sometimes people gain weight once they eliminate gluten from their diet, he also said that I might gain weight but it would be HEALTHY weight. This majorly freaked me out. I was reading through the forum...and it seems like people either lose weight or gain weight...its all different.

However, what if you are at a healthy weight for your height already? I checked the BMI calculator and everything and I am like...20-21. So I must be getting adequate nutrients unlike a lot of people.

I don't have celiac disease yet...I have about 5 years until I could possibly get it (good thing I caught the allergy on time) and I think I can gain weight easy if I want. So if don't have issues with gaining weight, not overly thin etc. Is it likely that I will gain extra weight when taking the gluten away?

When I was a kid I was very chubby, got made fun of etc. I didn't get thin until I was 14...I weighed like 100 lbs then and slowly gained weight each year up until the weight I am now. I like being thin, I can't NOT be thin. I think its very possible for me to turn annorexic if I start gaining weight because I just have become accustomed to being thin and I still am scarred from being made fun of.

I don't want to get celiac disease and have surgery to remove a portion of my intestine so I will eliminate the gluten...I guess I have no choice :(

I gained like 20 pounds while i was first sick w/ Celiac and after. It took me a while to loose weight but i think that's how my body reacted, i just swelled up. I lost the 20 ibs. and felt great until recently. Having probs. w/ gallbladder and kidneys and it is causing the same reaction... this bloating although I am actually eating less food! I have had annorexia thoughts before but never gave into it thank god. I know how frustrating it can be to feel like your living a healthy lifestyle but your body doesn't show it. Best of luck.. let me know how you are doing!

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Guest CarBear
Hmm...After thinking about my apointment to the nutritionist... I remember that I asked him what where the symptoms of celiac disease and he said I had all of them practically...so maybe he meant that I did have it? I could tell that he was trying not to scare me. I'm thinking that perhaps he meant that if I continued to eat gluten I would end up like one his patients who needed to have surgery. He threw out an estimation of when things could go downhill...ihe said five years. So I took it as just an allergy for now but after thinking about it I'm unsure. I think if I was in serious danger he would have done more tests...

I'm sure if I stick on the diet i'll heal and be okay. I don't want to have any scary tests done on my colon or whatever...that really freaks me out no matter what people say. I think I will take my chances...So far I feel a lot better on the diet and its not that hard :)

It's great that you're feeling better but please go to a proactive doctor! Celiac Disease can do more damage than you think if you are NOT properly DIAGNOSED. Its a simple blood test called a Celiac Panel. I went through so many tests before this one and in the meantime I was miserable and my health was dimishing. Please get it done just so you know and you can find helpful doctors! If you catch it now, you have a chance, i think, of being less affected by it in the long run.

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