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penguin Community Regular
penguin
Posted
Argh, Chelsea... I get that ALL the time, people asking me if I'm pregnant (I'm not). That has to be one of the worst insults. I just look them dead in the eye and say "nope, I just got fat." Then I give them a withering smile and walk away. Hopefully that keeps them from every embaressing anyone else like that. Ugh.

My sweet grandfather asked if I was pregnant on my wedding day <_<

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FaithInScienceToo Contributor
FaithInScienceToo
Posted

VENTING: I'm fed up and sick of these types of comments, too... (pardon the puns).

I'm one of the 'naturally' thin-since-youth celiacs, but I did gain weight (20 pounds) in my young 20's, and then lost it (plus 15 more!), pre-awful-clinical symptoms developing (It's NOT unusual, btw, for a celiac to gain weight before the 'typical' problems of losing too much and of trying to keep it on/gain it back set in! Perhaps when the initial damage begins, one's body tries to pack on the pounds to ward off starvation? Maybe this explains celiacs who gain weight?).

Anyway...

My own sister keeps saying "Since you self-diagnosed..." to me, as she keeps trying to act around our family like I don't 'really have it!'...she completely ignores the facts (that she well knows) that a GI doc also diagnosed me via blood testing after I was over 50 days gluten-free, and that I have one of the genes for celiac.

My sister-in-law isn't much better...As she continues to eat crap, and too much of it, and gets fatter, too (as my sister is doing), she keeps telling me to eat more, and says so in a way to try to make me feel unattractive for being thin (you have to hear the intonation to know what I mean...)...She does this to me ALL the time, even though I eat (and she sees me eating) a completely normal amount of food for a woman, including goodies, and I do NOT ever go hungry.

I just thought.... perhaps those who eat too much are being driven by their own food allergies, etc...

Well...we seem to agree that we get these types of comments mainly because the people who make them do not want to take responsibility for their own health issues, and seem to be trying to deflect attention away from their own nagging inner voices...

I wish I could e-mail this thread to them both...but, then they'd hate me...

So... I just accept that there are few people that REALLY 'get it' outside of other celiacs...and that's life.... :(

I've REALLY enjoyed reading this thread...nice to know I'm not the only one getting these rude, non-loving, remarks...thanks to the thread starter!

tiredofdoctors Enthusiast
tiredofdoctors
Posted

"SINCE YOU'RE SELF-DIAGNOSED"???????????????!!!!!!!!!!!!! So it doesn't count that since you've been gluten-free your life has gotten tremendously better? You're not as sick as you were? AND the fact that the GI doc has diagnosed you, as well???? Holy mackerel -- my sister and I are really, really, close. If she said something like that to me, I'd probably slug her! Chair or no chair!

I don't get many comments like that, probably because I AM in the chair. People are shocked, though, when I tell them that gluten put me there.

Because I don't have the GI symptoms, though, I have had people say that "they thought that celiac patients were really skinny." Gee, thanks. I have found out, though, that the lymphedema that I have from the autonomic dysfunction . . . it is throughout my legs, INCLUDING my thighs, and in my abdomen. I actually lost one size in jeans after a therapy treatment!

I think that people are basically uninformed about Celiac, and in most cases, ignorant. If anyone had to go through what you guys go through for three days, they would take back EVERYTHING they have ever said about wanting to have your disease. I can't imagine. I had IBS -- that was my diagnosis after the colonoscopy and endoscopy, also -- but now because of the brain thing, that's gone -- and another problem has developed (won't go into it). Just the IBS was bad . . . what you are going through is on the scale of AWFUL.

I am so sorry that people are SO insensitive as to say things like that. With all that you have to deal with, that is the LAST thing you need to have presented to you. I applaud your ability to bite your tongue, although I would imagine that at times you bite it until it bleeds. You are much better than the people making those comments. Just try to remember that . . . . . xoxoxoxoxoxoxLynne

NoGluGirl Contributor
NoGluGirl
Posted
I'm slightly overweight, not skinny, but still have the same symptoms, pain, etc. I'm one of those people who has always been slightly overweight, not obese, and can't seem to lose that last 20 pounds no matter how much I exercise, how sick I get or how little I eat.

I've heard an equally frustrating comment several times. It goes like this: "You can't eat wheat or milk or eggs or soy? Oh my gosh, if I couldn't eat those things I'd be SOOOO skinny!" Then they look at me with a kind of sheepish "Oops" look. I try to laugh it off and say that when I first found out about my food restrictions I did lose a lot of weight (and was almost anorexic), but that it came back on as soon as I discovered what I could eat.

Don't you know that skinny = healthy in most people's mind?

Dear lonewolf,

I am having difficulty losing weight as well. It is better now that I have gone gluten-free. Pilates has really helped, and it is easy on my fibromyalgia. The frustration of having gluten intolerance or celiac is unreal. I was barely taking in 1,200 calories a day and 30 grams of fat and walking briskly 20 minutes a day, five days a week, and still did not lose a single pound after three months! Naturally, the doctor blamed me for it. Yeah, there is no such thing as thyroid trouble, adrenal gland burnout, or yeast candida that make you fat when it is not your fault. And doctors are smart too! LOL! Hey, how many doctors does it take to screw in a lightbulb? None! They would not know where to put it! :lol:

Sincerely,

NoGluGirl

Queen Serenity Newbie
Queen Serenity
Posted

NoGluGirl,

In all seriousness, have you been checked for a thyroid problem? I have hypothyroidism, triggered by Celiac's of course, and I had an extreme weight problem. Nowadays, after being given synthroid, my frame has gone from 185 to 142. I think you should be tested right away. I was actually diagnosed 6 years after getting Celiac's. It is something that gives you chronic fatigue, so are you suffering from this? Please check into it. If you test positive, then your weight will come down. Good luck! :)

Vicki

11 years and still counting

lonewolf Collaborator
lonewolf
Posted
NoGluGirl,

In all seriousness, have you been checked for a thyroid problem? I have hypothyroidism, triggered by Celiac's of course, and I had an extreme weight problem. Nowadays, after being given synthroid, my frame has gone from 185 to 142. I think you should be tested right away. I was actually diagnosed 6 years after getting Celiac's. It is something that gives you chronic fatigue, so are you suffering from this? Please check into it. If you test positive, then your weight will come down. Good luck! :)

I agree that you should get your thyroid checked. I discovered I had low thyroid at the same time I found out all my food intolerances. My weight went down really fast and I think I lost over 40 pounds, but I did just about have an eating disorder because I was so afraid to eat anything. I've been on the thyroid (Armour, with brief stints on Synthroid and Levoxyl) for just over 10 years now and I have to say that it doesn't help keep the weight off anymore.

I teach PE, coach basketball and exercise regularly, and still carry extra weight. My husband teases me that I'm very "famine resistant" and it there's ever a famine I'll be a long-term survivor. I have to keep reminding myself that I am healthy and that's more important than being skinny.

eKatherine Apprentice
eKatherine
Posted
I teach PE, coach basketball and exercise regularly, and still carry extra weight. My husband teases me that I'm very "famine resistant" and it there's ever a famine I'll be a long-term survivor. I have to keep reminding myself that I am healthy and that's more important than being skinny.

This is absolutely true. People who tend to put on weight in times of plenty have undoubtedly been better able to survive through famines and continue to procreate, while people who started a long famine with no excess weight were undoubtedly likely to die off quicker. So plump people pass their genes on to their children, who also have the ability to withstand famines. Unfortunately, for the first time in the existence of humans, there are no famines to keep us plumpies from bloating up and staying that way.

We are designed only to procreate successfully and pass our genes on to the next generation. It's a nice fluke if our bodies hang together to a ripe old age.

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    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

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      Outgrow celiac?

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      I think your initial idea, eat gluten and be tested, was excellent. Now you have fear of that testing, but isn’t there also a fear each time you eat gluten that you’re injuring your body? Possibly affecting future fertility, bone health and more? Wouldn’t it be better to know for sure one way or the other? If you test negative, then you celebrate and get tested occasionally to make sure the tests don’t turn positive again. If you test positive, of course the recommendation from me and others is to stop gluten entirely.  But if you’re unable to convince yourself to do that, could a positive test at least convince you to minimize your gluten consumption?  Immune reactions are generally what is called dose response, the bigger the dose, the bigger the response (in this case, damage to your intestines and body). So while I am NOT saying you should eat any gluten with a positive test, the less the better.  
    • knitty kitty
      Outgrow celiac?

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      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Hello.  I apologize for your thread being hijacked.   I recognize your symptoms as being similar to what I experienced, the migraines, food and chemical sensitivities, hives, nausea, the numbness and tingling, joint pain, tummy problems, sleep problems, emotional lability, and the mom brain.  My cycle returned early after I had my son, and I became pregnant again with all my symptoms worsening.  Unfortunately, I lost that baby.  In hindsight, I recognized that I was suffering so much from Thiamine deficiency and other nutritional deficiencies that I was not able to carry it.   Celiac Disease affects the absorption of nutrients from our food.  There's eight B vitamins that must be replenished every day.  Thiamine Vitamin B1 becomes depleted first because it cannot be stored very long, less than two weeks.  Other B vitamins can be stored for two months or so.  But Thiamine can get low enough to produce symptoms in as little as three days.  As the thiamine level gets lower, symptoms worsen.  Early symptoms like fatigue and anxiety are often attributed to life situations, and so frequently go unrecognized by medical professionals who "have a pill for that".   I used to get severe migraines and vomiting after gluten consumption.  Thiamine and the other B vitamins are needed to turn carbohydrates, fats and proteins into fuel for our bodies.  With a large influx of carbohydrates from gluten containing foods, the demand for Thiamine increases greatly.  Available thiamine can be depleted quickly, resulting in suddenly worsening symptoms.  Emotional stress or trauma, physical activity (athletes and laborers) and physiological stresses like pregnancy or injury (even surgery or infection) increase the need for Thiamine and can precipitate a thiamine insufficiency. 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Do talk to your doctor and dietician about checking for nutritional deficiencies.  Most blood tests for the eight B vitamins do not reflect how much is available or stored inside cells.  Blood tests reflect how much is circulating in the blood stream, the transportation system.  Blood levels can be "normal" while a deficiency exists inside cells where the vitamins are actually used.  The best way to see if you're low in B vitamins is to take a B Complex, and additional Thiamine and look for improvement.   Most vitamin supplements contain Thiamine Mononitrate, which is not easily absorbed nor utilized by the body.  Only thirty percent of thiamine mononitrate listed on the label is absorbed, less is actually utilized.  This is because thiamine mononitrate is shelf stable, it won't breakdown sitting on a shelf in the grocery store.  It's so hard to breakdown, our bodies don't absorb it and can't turn it into a form the body can use.  Take Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) which the body can utilize much better.  (Ask for an Erythrocyte Transketolace Activity test for Thiamine level.  Though not accurate, this test does better picking up on a thiamine deficiency than a blood test.) Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
    • trents
      Outgrow celiac?

      By trents · Posted

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
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