Celiac's

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honu18
honu18 Posts: 294 Member
in Health and Weight Loss
For the past few months, I've been experiencing uncontrolled weight gain (despite eating and exercising and logging like I was when I was losing weight), abdominal pain..tons of bloating every single day, I haven't had a period in 3 months, I've bruised easily, I'm losing my hair, been tired, and just don't feel like I used to. I'm always hungry and trying not to eat because I keep gaining weight. I've told this to my doctor but they don't seem to think anything of it.

I've been tested for anemia and hypothyroid (blood has been tested 3x in the last few weeks!) and one time, my blood counts were low, but have since resolved themselves. I was looking around and stumbled upon Celiac's disease and saw that a lot of my symptoms fit, except I haven't been losing weight.

Anyone here have Celiacs or know anyone that does? What kind of symptoms did you have and all of that? Just trying to find out more if this could be that? I'm hoping not but I would still like to know. Thanks.

Replies

  • mollysonnotice
    mollysonnotice Posts: 140
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    I do not have Celiac's but my sister does. She's 22, 5'1" and 90 lbs. (She also suffers from an ED but is in recovery, this is actually the heaviest she's weighed in years). She lost about 30 lbs before we figured out why she was sick. The doctors told us that the ED developed from the beginning of the symptoms. I'll try to recall what happened, but this began over 9 years ago when I was only 9 or 10.

    She was always nauseous and never hungry. Could only eat really light foods (so snacking really if at all) so meals were mainly water and a couple bites of something before she was sick again. She was bloated, lost most of her hair and her nails started chipping. She had trouble sleeping, then trouble waking up and could never concentrate.

    EDIT: Forgot to add that she lost her period too, but that could have been the ED as well......

    But then again. Symptoms are symptoms and have a variety of diagnoses. So be careful what you read online. I mean you can type in "Why am I tired in the morning" and the answer is "You're dying". So yeah. Good luck, I hope you figure this all out.
  • mermx
    mermx Posts: 976
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    Coeliacs diaganosis causes sickness, upset tummy when you eat gluten foods, due to the vilae in your colon (short version) do you eat something with gluten and feel those symptoms? If you are coeliac you will know it!

    Ulcerative colitis can be due to stress/ bad diet causes bloating?

    I am not a doctor but sounds to me that your diet is lacking in nutrients/minerals/vitamins which will cause some of your problems.

    Are you under eating?
  • Mauimema
    Mauimema Posts: 2
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    I have been diagnosed with Celiac Disease for almost 8 years. I had severe anemia, weight lose, thyroid issues, stomach pain and vomiting. My problem with weight increased after my diagnosis, I gained 25 pounds...Many gluten free foods are high in sugar and fat content (to off set their tastelessness). I would suggest a two week "trial" of eliminating gluten foods and see what happens. THen report results to the doctor. There is a blood test for Celiac Disease and of course, an endoscopy. Good luck.
  • bag_girl
    bag_girl Posts: 1
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    Have you done any food intolerance testing? I was struggling to lose weight even with going to the gym 3 or 4 times a week and being really careful about what/how much I eat and it was starting to get me down.

    I did (at the suggestion of family & friends) a foodscan test with YorkTest and discovered that my body is intolerant to a few different things (eggs, gluten, diary + a few others), I've cut all these things out of diet and in the past 3 weeks I've lost 8lbs, loads of people have noticed & made comments, it's lifted my confidence big time.

    In a few months I will start adding these foods back into my diet to see what symptoms occur, if any as sometimes the body will repair itself, YorkTest provide two calls with a nutritional therapist (within the cost of the test) I've already had the first call and will arrange the second for when I'm ready to start introducing foods back.

    I agree with Mauimema's advise, cut the gluten out, keep a diary & go back to see your doctor, discuss how you're feeling and ask if they can provide any food allergy/intolerance testing.

    Good luck :smile:
  • honu18
    honu18 Posts: 294 Member
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    Coeliacs diaganosis causes sickness, upset tummy when you eat gluten foods, due to the vilae in your colon (short version) do you eat something with gluten and feel those symptoms? If you are coeliac you will know it!

    Ulcerative colitis can be due to stress/ bad diet causes bloating?

    I am not a doctor but sounds to me that your diet is lacking in nutrients/minerals/vitamins which will cause some of your problems.

    Are you under eating?

    I'm not under eating! I eat probably average 1500 to 1600 calories a day, and I usually do about 30 mins of cardio exercise a day, one form or another (some days it's just walking and such, other days are longer runs or something). I try to really eat all of my food groups--a lot of my staple foods are cereal, chobani, veggie burgers/grilled chicken, salads, almonds, granola/protein bars, at least one or two fruits a day (apples, bananas, oranges, nectarines), and then some random sweets or something. I also take a multivitamin, as well as vitamin B12 and omega-3 supplements.
  • honu18
    honu18 Posts: 294 Member
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    I have been diagnosed with Celiac Disease for almost 8 years. I had severe anemia, weight lose, thyroid issues, stomach pain and vomiting. My problem with weight increased after my diagnosis, I gained 25 pounds...Many gluten free foods are high in sugar and fat content (to off set their tastelessness). I would suggest a two week "trial" of eliminating gluten foods and see what happens. THen report results to the doctor. There is a blood test for Celiac Disease and of course, an endoscopy. Good luck.

    I've thought about cutting gluten out myself to see, but I don't want to throw off test results, as stuff that I've seen suggests if you have it not to do it until you know for sure because you can mess up test results. I can't get into my doctor (new patient stuff) for another 10 days or so. :\
  • Tkwild
    Tkwild Posts: 116 Member
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    I gained weight due to coeliac, I think due to food going straight through me and therefore starvation mode.
  • Tkwild
    Tkwild Posts: 116 Member
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    Also I agree you're better to get the test BEFORE cutting gluten out, otherwise you have a high(er) risk of a false negative.
  • Mauimema
    Mauimema Posts: 2
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    Good luck to you. It will be difficult to continue eating foods that you know make you sick, but the doctor does need to see you "sick". I had cut out glutne foods about a week before my endoscopy, but the test results still showed poor to no villia in the tests.
  • TheyCallMeTaterSalad
    TheyCallMeTaterSalad Posts: 41
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    I have Celiacs disease, and it also caused me to gain weight. My GI dr. told me that although most people w/Celiacs lose weight it's not unheard of or even uncommon for people to gain weight b/c of it. When I consumed gluten my symptoms consisted of severe stomach pain, constipation or loose bowel movements, eczema flair ups, joint paint, hair loss, poor sleep patterns, and severe anemia.

    If I were you I would get tested asap b/c if it's not some type of gluten intolerance or sensitivity there may other underlying medical issues that need to be addressed. Also, don't cut gluten out until you go to the doctor b/c as the previous posters have mentioned he really does need to see you sick to get the most accurate test results.

    Hope you get some answers soon, and start to feel better.
  • sgarza1972
    sgarza1972 Posts: 1
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    Hello, I feel your pain! Don't cut out gluten until you've at least had an Antigliadin blood test. I was diagnosed about 10 months ago and was always heavy, never could break out of plateaus, chronically anemic, always perplexed. I am an "asymptomatic celiac." The only symptom I had was anemia, but I had moderately severe intestinal damage. Here's the reality: if you have Celiac's you will gain more weight when you go GF. I've gained 15 lbs since my diagnosis, 10 the last 3 months. You're body is starving. Get some vitamins from CeliACT.com. If you can afford it, get the diagnosis. Then cut ALL carbs and try the South Beach or Paleo diet. That seems to be most successful from what I hear. Whatever the case... Best of luck!
  • DorothyR87
    DorothyR87 Posts: 113
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    Hello, I feel your pain! Don't cut out gluten until you've at least had an Antigliadin blood test. I was diagnosed about 10 months ago and was always heavy, never could break out of plateaus, chronically anemic, always perplexed. I am an "asymptomatic celiac." The only symptom I had was anemia, but I had moderately severe intestinal damage. Here's the reality: if you have Celiac's you will gain more weight when you go GF. I've gained 15 lbs since my diagnosis, 10 the last 3 months. You're body is starving. Get some vitamins from CeliACT.com. If you can afford it, get the diagnosis. Then cut ALL carbs and try the South Beach or Paleo diet. That seems to be most successful from what I hear. Whatever the case... Best of luck!

    I'm sorry but I disagree about everyone having celiac and gaining weight when you go gluten-free. Though it's only been 3 days of being gf for me I know several people who have lost a signigifcant amount of weight by switching after their diagnosis. Some people probably do gain, but there are lots who lose weight once their body gets out of that starvation mode.
  • careyelaine1231
    careyelaine1231 Posts: 1
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    I was diagnosed with Celiacs about a month ago and have been gluten free since and I've lost about ten pounds. I have been kind of concerned because it felt like a lot of weight to lose in such a short time. I started poking around online to see what I could find and it seems to effect everyone differently. Some people gain and some people lose.
  • monicalosesweight
    monicalosesweight Posts: 1,173 Member
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    Fair warning, veggies burgers contain wheat in them which is gluten. I would recommend you read what's in them. If you want to go gluten free, you'll probably need to stop eating those. Sorry. I thought it best to warn you once I saw that part of your posting.

    I'm gluten free and I eat a lot of rice, veggies, some fruits, nuts, and gluten free products. It takes a bit but once you start getting used to how to eat it's not that hard.

    There are tons of great gluten free products but be careful of the calories, some are higher than others. There are also support groups here for allergies and celiac's which may have some great previous posts so you may want to add them to your groups and explore them or use the search function and type in gluten free breads and more to see what pops up.

    Monica
  • monicalosesweight
    monicalosesweight Posts: 1,173 Member
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    Hello, I feel your pain! Don't cut out gluten until you've at least had an Antigliadin blood test. I was diagnosed about 10 months ago and was always heavy, never could break out of plateaus, chronically anemic, always perplexed. I am an "asymptomatic celiac." The only symptom I had was anemia, but I had moderately severe intestinal damage. Here's the reality: if you have Celiac's you will gain more weight when you go GF. I've gained 15 lbs since my diagnosis, 10 the last 3 months. You're body is starving. Get some vitamins from CeliACT.com. If you can afford it, get the diagnosis. Then cut ALL carbs and try the South Beach or Paleo diet. That seems to be most successful from what I hear. Whatever the case... Best of luck!
    I'm sorry but I disagree about everyone having celiac and gaining weight when you go gluten-free. Though it's only been 3 days of being gf for me I know several people who have lost a signigifcant amount of weight by switching after their diagnosis. Some people probably do gain, but there are lots who lose weight once their body gets out of that starvation mode.

    I went gluten free due to a wheat allergy but I've lost tons of weight. I also have friends with Celiac's who experienced weight loss. I think it's different for everyone. You have to pay attention to labels and really figure out the calories and check them out before buying. FYI - I've seen breads with low calories and some with high so you have to check the labels. I like Livwell's (Whole Foods carries them) but a crumpet is 100 calories and a baguette is a terrifying amount of calories. Also, you can do rice, oatmeal, potatoes (sweet and more). I would recommend buying a weight scale in ounces and grams. I tend to eat higher levels of protein, some veggies and fruits, varieties of nuts, and my carbs are kept at a low level. I do know of people who've suspected it and trying it isn't going to hurt you. Also, the tests aren't always conclusive. The doctors will tell you that if you ask. I would try an elimination diet and go with the most common allergens and re-add them in slowly to see how your body reacts. You can probably figure out what's bothering you. Heck, it could even be an allergy that you need to find.
  • RockaholicMama
    RockaholicMama Posts: 786 Member
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    I've been diagnosed for nearly 3 years, my mother 5 years and my brother a year. Once I went gluten free my weight issues, as well as my stomach pain, vomiting, ect have all seemed to have disappeared. It took me a while to get on track and get my body into a comfortable state. I would say 3 or so months, if I remember right, before I started feeling normal again. With the gluten free foods you really have to watch whats in them. I've gotten to a nice point where I make a lot of things at home, like bread for instance.
  • taramaureen
    taramaureen Posts: 569 Member
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    I agree with some of the others, go to a GI specialist FIRST before going GF. I was diagnosed 2 years ago. In that 2 years my mother and sister have also been diagnosed. All with very simmilar symptomes of yours. Honestly, I haven't gained any weight since my diagnoses, but I haven't really lost any either. Still fluxuating within the same 10lbs. BUT I feel soooooooo much better.
  • wackyfunster
    wackyfunster Posts: 944 Member
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    I disagree with people saying you need to go see a GI specialist before going gluten free. I think seeing a specialist ASAP is something that you absolutely should do, but it doesn't hurt you to go gluten free for a couple of months to see if that helps you (given that ~40% of people of european descent have one or more gluten sensitivity genes, odds are pretty good that if it looks like a duck...).

    Gluten free is easy, and worth trying if you have celiac symptoms.

    For the record, this is the first time I have given this advice, as I think the boards are full of hypochondriacs who want to ascribe their issues to circumstances beyond their control, etc. In your case, it sounds like you have legitimate reason to suspect celiac. Best way to rule it out is to eat 100% gluten free for 2-3 months.

    You should also see a doctor (immunologist might not be a bad idea as well as a GI specialist... get tested for food sensitivities. Personally, I have had AMAZING results based upon the results I got from the MRT test, and know other who have as well).

    I hope this is helpful.
  • AngelaLang24
    AngelaLang24 Posts: 8 Member
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    I was recently diagnosed with Celiac's and had almost no symptoms. It was by chance that my endocrinologist tested me. DO NOT go gluten-free if you plan to have a blood test. You need to be eating gluten containing foods for the test to be accurate.
  • monicalosesweight
    monicalosesweight Posts: 1,173 Member
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    If you do have symptoms though, you can go off gluten products for a while to verify if that's causing it. For some, the relief comes pretty darn quick. I know everyone keeps chanting tests, test! But the reality is that not everyone here has the insurance to cover so called tests. Depending on your insurance, you could easily be looking at paying out 1,500K for that so called test versus an elimination diet and seeing if your health improves. There are only certain items out there that cause big allergic reactions or are items that cause intolerance's. Her symptoms fall in line with Celiac's so it's easy enough to see if her health improves by just seeing if the symptoms go away. There is no harm in doing so. Heck, a friend of mine was told that the tests aren't even 100% accurate which means that they'd probably suggest an elimination diet anyway after the test to verify what's causing the issues. If her symptoms improve, what's the point of the test? They'll just tell her to stop eating wheat.

    I'd start with gluten and maybe dairy. If the symptoms don't abate, you could add the others. Once your symptoms start to vanish, test each one individually and slowly. If you've got an issue - it's going to be pretty darn obvious.

    Basically, these are what the Mayo Clinic claims are the top allergens:

    Milk
    Eggs
    Peanuts
    Tree nuts (such as almonds, cashews, walnuts)
    Fish (such as bass, cod, flounder)
    Shellfish (such as crab, lobster, shrimp)
    Soy
    Wheat

    This is a really interesting article about the tests and someone's experience in taking them and how it failed to show they had it. There's something about the test only working if you're in the end stages of the disease.

    http://www.naturalnews.com/033502_celiac_disease_gulten_intolerance.html

    Information on Celiac's tests (rated 90% accurate)...

    http://www.celiac.com/articles/32/1/How-accurate-are-blood-antibody-tests/Page1.html#.UNBT0qz4LS4

    Here's an article by a researcher saying it's only 80% accurate. At this point, you may as well just do an elimination diet and see if your health improves. If it's not accurate, you could get a wrong diagnosis and then you'd not even try the diet and you'd discover too late that you did have Celiac's (or some other intolerance - maybe even an allergy one).

    http://www.celiac.com/articles/22310/1/Blood-Testing-for-Celiac-Disease-Isnt-Very-Accurate/Page1.html#.UNBUD6z4LS4

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