• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Why Do Some People With Celiac Disease Look So Healthy And Other's Don't
0

33 posts in this topic

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????

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Celiac disease is an autoimmune disease. It's been my experience (since i have another autoimmune disease as well) that such disease effect everybody differently. I have psoriasis, but it's not covering my entire body or even large portions like it does on some people. Why? No idea.

I think it's the same way with celiac. Some people look great. Some people have a harder time healing than others. For some it takes a long time, for others it takes less time. I'm an overweight celiac. I have always been slightly overweight, and going gluten free, I've lost maybe five pounds, but people tell me I look thinner. I've lost some water retention, I think.

To put on weight, maybe you need to up the healthy fats in your diet. Avocadoes, fatty fish like salmon, good meats. Eggs that are high in omega-3 (or whatever that good omega fat is supposed to be). Nuts, if you're not allergic.

It's also possible you have other food intolerances, such as dairy. I had to cut out dairy, as well as foods I have allergies to, in order to start REALLY feeling better, rather than just "better than I did before".

As for baking bread, I am a fantastic baker and I have hit-or-miss luck with gluten free baked goods. At this point, I have just decided to not bother with sandwich breads. I eat salads with gluten free crackers, meat, veggies, rice, potatoes, fruit, eggs, you get the picture. Whole foods. Most baked goods aren't that good for you anyway, and just because they're gluten free doesn't mean they're healthier.

0

Share this post


Link to post
Share on other sites

I remember one of the first time I went out to eat after going gluten-free..I was at this falafel place and asking about what was safe, etc... And the guy working there was like, "you look healthy, i would never of thought you had celiac". I am still stumped by that statement. Am I supposed to look sick? :(

I guess when I heard that, it depressed me and made me think to myself..wow, i am sick, i have a chronic illness, even though i don't feel like i do (for now). But since being gluten-free, I have been 100% about it, and have no plans to cheat.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Another overweight celiac here...in fact my chief complaint to docs over the years was that I keep gaining weight with no explanation...I've gained 60 lbs in 20 years and for most if not all of those I was eating very well balanced meals and exercised a good amount. Every single doc dismissed it usually along with a wink, wink look of - sure, you are eating right and exercise enough. Those that know me well also could not understand how I could do so much and eat so little and look like I eat junk food all day long.

Anyway...here I am gluten-free for 42 days and while I'm not certain I've lost weight I look thinner...I think I've been bloated in more than my tummy for years! The cloud that I've been walking around with for a long time seems to be lifting...I am still bloating everyday...just not as badly. My joints are far from happy, but do feel better as well. It is after 5pm and I feel decent...it is a very good day.

I sure wish everyone would expand the symptom list based on this site...For goodness sake...even when family and friends are trying to understand and learn about celiac for themselves they ask -- but you aren't thin or underweight!

0

Share this post


Link to post
Share on other sites
Ads by Google:


First of all, pretty much anyone on tv has a crew of make up artists, hair stylists, and wardrobe consultants. <_<

Seriously though, a diligent celiac should look healthy - I think the celiac diet is a pretty healthy one. Think of all the processed stuff one can't eat - it's easier to stick with fruits, vegetables, unprocessed meats - than to risk glutening.

I'm one of those leaner celiacs. When I get glutened I do look sick. I get sinus/migraine headaches and lovely dark circles around my eyes. I get very bloated out. Maybe my smaller frame makes it more obvious. I've heard that some people 'look' celiac...I think it has to do with the dark circles and leanness. HOWEVER - if one is eating gluten-free one shouldn't have that "celiac" look.

Of course, if all celiacs looked like celiacs (should there be such a look for everyone) it wouldn't take so darn long to find the right diagnosis...the average celiac takes 11 years to get diagnosed !!! Ugh.

0

Share this post


Link to post
Share on other sites
Celiac disease is an autoimmune disease. It's been my experience (since i have another autoimmune disease as well) that such disease effect everybody differently. I have psoriasis, but it's not covering my entire body or even large portions like it does on some people. Why? No idea.

I think it's the same way with celiac. Some people look great. Some people have a harder time healing than others. For some it takes a long time, for others it takes less time. I'm an overweight celiac. I have always been slightly overweight, and going gluten free, I've lost maybe five pounds, but people tell me I look thinner. I've lost some water retention, I think.

To put on weight, maybe you need to up the healthy fats in your diet. Avocadoes, fatty fish like salmon, good meats. Eggs that are high in omega-3 (or whatever that good omega fat is supposed to be). Nuts, if you're not allergic.

It's also possible you have other food intolerances, such as dairy. I had to cut out dairy, as well as foods I have allergies to, in order to start REALLY feeling better, rather than just "better than I did before".

As for baking bread, I am a fantastic baker and I have hit-or-miss luck with gluten free baked goods. At this point, I have just decided to not bother with sandwich breads. I eat salads with gluten free crackers, meat, veggies, rice, potatoes, fruit, eggs, you get the picture. Whole foods. Most baked goods aren't that good for you anyway, and just because they're gluten free doesn't mean they're healthier.

Thanks for the advice. I have a problem with dairy, I think too... Dairy is the easiest milk for me at the moment.. I have worse issues with the other milks ( rice and soy). They really make me sick.I am eating lots of red meats... I eat steaks 1 or 2 times a week and fish is part of diet too.. I am done with baking anway, the last time.. I made gluten-free bread it was hard as a rock on the outside and not done on the inside...yuck...

Obviously, baking is not the right thing for me...

I had some skin issues, before starting the gluten free diet with eczema... I don't have any skin issues currently.

I don't know, if I will ever have control over this diet... All my attempts at getting healthy have been a complete failure.

0

Share this post


Link to post
Share on other sites

I looked sick before my diagnosis. I probably started looking better a few months into the diet. One day, quite recently, I looked in the mirror and realized I was back. I'm no longer bloated, my skin is glowy, my hair is shiny again. It took a year on the diet to get to this point. As for weight issues, I weigh five pounds less than I did when I was sick. I was already at a good weight. Now I'm at my dream perfect weight (I'm very short so five pounds packs quite a bit of punch on me.)

0

Share this post


Link to post
Share on other sites
Thanks for the advice. I have a problem with dairy, I think too... Dairy is the easiest milk for me at the moment.. I have worse issues with the other milks ( rice and soy). They really make me sick.I am eating lots of red meats... I eat steaks 1 or 2 times a week and fish is part of diet too.. I am done with baking anway, the last time.. I made gluten-free bread it was hard as a rock on the outside and not done on the inside...yuck...

Obviously, baking is not the right thing for me...

I had some skin issues, before starting the gluten free diet with eczema... I don't have any skin issues currently.

I don't know, if I will ever have control over this diet... All my attempts at getting healthy have been a complete failure.

Sounds like you have already made some progress. Stick with it, you will get control. The first couple of months are hard, there's no way around it. Gluten is everywhere, in things you would NEVER suspect, and you never think about it until you have to. It's a completely new way of looking at things.

You don't really need all that baked stuff anyway. Much of it is empty calories. Concentrate on whole foods, fatty fish, nuts, etc, as the others have said. That way you gain healthy weight, and not all the bad things that accompany eating junk food just for the sake of gaining weight.

Our bodies are all different. While I never lost drastic amounts of weight, I didn't look healthy either. A lot of people were worried about me because I had circles under my eyes, was tired, didn't have much color, etc. But it was only people who knew me well. I didn't look like I was dying, but to those who knew me, I didn't look healthy.

Stay positive!!

0

Share this post


Link to post
Share on other sites
Thanks for the advice. I have a problem with dairy, I think too... Dairy is the easiest milk for me at the moment.. I have worse issues with the other milks ( rice and soy). They really make me sick.I am eating lots of red meats... I eat steaks 1 or 2 times a week and fish is part of diet too.. I am done with baking anway, the last time.. I made gluten-free bread it was hard as a rock on the outside and not done on the inside...yuck...

Obviously, baking is not the right thing for me...

I had some skin issues, before starting the gluten free diet with eczema... I don't have any skin issues currently.

I don't know, if I will ever have control over this diet... All my attempts at getting healthy have been a complete failure.

I hate gluten-free baking too. Maybe when the gluten-free Betty Crocker mixes come out I'll try again. I eat a lot of meat and fish now and a ton of Kind bars. If you can eat nuts they are the bomb.

0

Share this post


Link to post
Share on other sites
Thanks for the advice. I have a problem with dairy, I think too... Dairy is the easiest milk for me at the moment.. I have worse issues with the other milks ( rice and soy). They really make me sick.I am eating lots of red meats... I eat steaks 1 or 2 times a week and fish is part of diet too.. I am done with baking anway, the last time.. I made gluten-free bread it was hard as a rock on the outside and not done on the inside...yuck...

Obviously, baking is not the right thing for me...

I had some skin issues, before starting the gluten free diet with eczema... I don't have any skin issues currently.

I don't know, if I will ever have control over this diet... All my attempts at getting healthy have been a complete failure.

Are you allergic to nuts? If not, I would suggest almond milk. I prefer the taste over rice and soy, though I do use soy on my cereal (it's the milk the rest of the household uses, so it's just convenient to me).

Yep, don't worry about baking. Seek out foods that are naturally gluten free. Potatoes, steak like you're eating (mmm, steak), and again, avocadoes and other healthy fats.

There's always a learning curve to the gluten free diet. I had a hard time letting go of dairy. I leaned heavily on cheese after I gave up bread. It sounds like you've had a positive response with your eczema clearing, that's great! Don't give up.

0

Share this post


Link to post
Share on other sites

I was wondering the same thing. I was diagnosed with Celiac Disease about a year and a half ago, and everytime I see a picture of myself, I feel like I look sickly. I am about 102 pounds, and my family thinks I'm too thin, but I am perfectly happy at this weight. I just want to look and feel and look healthy. I was also diagnosed with fibromyalgia today. I think chronic pain wears a person down physically and mentally.

0

Share this post


Link to post
Share on other sites

I got a real indication last week at how bad I must look...

I was at work, I work at a cinema, and I served a lady, I had never seen or known her and she said to me....

Are you alright?..... I smiled at her and said "yeah I'm alright"

she then again said.... Are your sure your okay?... I laughed and said "yeah I'm fine "

She then said "Health wise, I mean?....is your health alright?"

I found this odd to be asked this, and I said, ohhh I have celiac, guess that's a health problem

She said you truly do not look well....

Then the other day my mother in law rang me, and said you need to get more help,

You shocking people with the way you look... she said that my sister-in-law who hadn't seen me in approx 3 months, said I was unrecognizable, she would never of believed that the person she saw standing before her was me...

besides the drastic weight loss, my mother in law went onto say....

you seem like a shell, you no longer have the glimmer in your eyes, you look like noone is inside your body... well not the person we know as always spirited and enthusiastic, that spread infectious laughter into other people... it's so hard seeing you like this, is there anything we can do to help you..

clean your house?... anything..... we want you better, your so distant ,we want YOU back.

If only they knew, I want " ME "back also...................

All my friends make comments, and continually ask me am I alright?..... people have even asked my husband am I dying of something?

So in answer to your question.... I'm so looking forward to looking healthy again!!!...............because with all these types of comments, I must look dreadful!

0

Share this post


Link to post
Share on other sites
Another overweight celiac here...in fact my chief complaint to docs over the years was that I keep gaining weight with no explanation.

It's my understanding that weight loss from celiac disease is from having damaged villi that are unable to absorb food properly. That makes sense to me, but I haven't heard an explanation for weight gain. Can somebody please explain how it would happen?

0

Share this post


Link to post
Share on other sites
It's my understanding that weight loss from celiac disease is from having damaged villi that are unable to absorb food properly. That makes sense to me, but I haven't heard an explanation for weight gain. Can somebody please explain how it would happen?

It's actually more related to nutrient deficiencies. Certain metabolisms, like mine, when deprived of nutrients will lose weight until people start asking if you're ok. Other metabolisms are the kind where you may be short on nutrients, but as long as you're getting any calories at all your body will hold them tight and not release any of them, turning them into fat. I don't know the underlying reason for this metabolic discrepancy, but a number of overweight people will lose weight when improving their nutrition even without reducing caloric intake. Basically the body has two reactions to high-calorie malnutrition: either lose or gain weight. It's been my experience that most people are very much one or the other, and not a lot of people at time of diagnosis are a pretty normal weight and continue to be after going gluten free, most swing one way or the other.

0

Share this post


Link to post
Share on other sites
you seem like a shell, you no longer have the glimmer in your eyes, you look like noone is inside your body... well not the person we know as always spirited and enthusiastic, that spread infectious laughter into other people... it's so hard seeing you like this, is there anything we can do to help you..

clean your house?... anything..... we want you better, your so distant ,we want YOU back.

My parents came to visit me after I'd been gluten-free for about a year. My mom looked at me and said "you're back".

It does get better.

0

Share this post


Link to post
Share on other sites

I have resumed some of the activities I bowed out of last year because I just wasn't up to it, and everywhere I go now, people are saying, "Wow, you look a lot better". Well I knew I was feeling bad but hadn't realized I was *looking* that bad. :lol:

0

Share this post


Link to post
Share on other sites
It's actually more related to nutrient deficiencies. Certain metabolisms, like mine, when deprived of nutrients will lose weight until people start asking if you're ok. Other metabolisms are the kind where you may be short on nutrients, but as long as you're getting any calories at all your body will hold them tight and not release any of them, turning them into fat. I don't know the underlying reason for this metabolic discrepancy, but a number of overweight people will lose weight when improving their nutrition even without reducing caloric intake. Basically the body has two reactions to high-calorie malnutrition: either lose or gain weight. It's been my experience that most people are very much one or the other, and not a lot of people at time of diagnosis are a pretty normal weight and continue to be after going gluten free, most swing one way or the other.

I think what happens for we gainers is that the body is "starved" for the proper nutrients, and therefore thinks it is not getting enough food, period, and goes into conservation mode to prepare for the long term famine it expects. It doesn't know there is no famine and it doesn't need the fat, it just needs the nutrients it isn't getting.

0

Share this post


Link to post
Share on other sites

I have been overweight for some time now, my job does not help me maintain a decent diet, so the weight increased over the past couple of years.

Then I suddenly started to lose it when I discovered a gluten intolerance and it got more and more severe as the recent months went on.

I will openly admit that I wanted to lose weight, but would never have wanted to do it the way I have. I have never been this slim since my early teens. I feel much more confident in myself and the way I look, but I still struggle with the weight loss (lost 3lbs since Wednesday) and the sickness.

I struggle with the way I have to eat and the ways I have to shop (newly diagnosed so still finding my feet as it were) but I look better now than I have done in years, but only because of the weight loss. I don't feel better in myself, in fact I feel worse than I have done in many years, but I am hoping to control that with the new adjusted diet.

0

Share this post


Link to post
Share on other sites

I look healthy if I am able to keep EVERYTHING that irritates me out of my diet.

Yet there are times, like right now for example, when some unknown source of gluten seems to have gotten into my diet, and now I have a splattering of huge painful zits all over my face, my stomach is destended, I have gas all the time, and painful bloating, I'm depressed, etc.

So I guess it's a blessing and a curse. It sucks to feel and look this way but at least my body makes it quite clear when I need to check my diet. :huh:

0

Share this post


Link to post
Share on other sites

before i went gluten free i had gained weight (5'7" 185 at 18 years old) not big but i had some extra fluff, 2 months after going gluten free i had dropped almost 20 lbs so the gluten can do a lot.

as to the look of celiacs, every one is different, i have a friend that while she doesnt look sick she looks tired and slightly disconnected and i think it is because she is a celiac that doesnt eat gluten-free, part of it is probably your mental view on it and part is just how your body reacts to it

-matt

0

Share this post


Link to post
Share on other sites

I am really glad to read some of these posts. My daughter has always been overweight (since 8 yrs old and is now a teen) and we could not figure out why. She ate healthy foods and was on a swim team, for pity sake!! She also, of course, had all sorts of digestive problems but no one ever said Hey, how about Celiac! My other daughter and myself (also Celiacs) are not overweight, but not underweight either. I had always thought one had to be emaciated or something, but am finding out that it is no such thing! It is really interesting how this thing affects people in so many different ways.

0

Share this post


Link to post
Share on other sites

do people find that after they've been glutened, they actually look slightly healthier for a few days after?! I've noticed this with myself sometimes... very strange

and then, it seems as if my body is trying to flush it out and I get the shadows under my eyes, skin gets very dry and just look awful really

0

Share this post


Link to post
Share on other sites

My husband went from the picture shown in the post to 130 Lbs. and never gained the weight back. He is 100% gluten free, dedicated to gluten-free as well as soy free. He now looks gaunt and ill. I can now say that after about 4 years of gluten-free he still is very thin and fragile in appearance, but his skin coloring is more normal (he doesn't look "grey" any longer - except his hair). I think there's a point of no return for a small portion of celiacs who went very long getting diagnosed.

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,421
    • Total Posts
      930,471
  • Member Statistics

    • Total Members
      63,848
    • Most Online
      3,093

    Newest Member
    glutenfreekiddo
    Joined
  • Popular Now

  • Topics

  • Posts

    • There is currently not any enzymes you take that will get rid of gluten, they are working on a promising one to reduce symptoms but all others out there right now are a bust and will not help you much if it all with gluten exposure, Celiac is a auto immune disease, your reacting to the proteins of gluten and it is attacking them and your own body.  I do suggest a digestive enzyme if you have food issues in general to help break them down. But this will not fix gluten exposure, reduce damage from gluten, or make gluten eating safe by any means. These current ones on the market are FAD ones target at healthy people and helping them with general digesting of gluten proteins but will not help you if you have celiacs to eliminate gluten reaction symptoms.
    •   Could try causally asking your family to get the blood test done next time they are at the doctors. They could have it and only have minor or no symtoms to it. There is a form of it called silent celiacs with no outward symptoms but it is still destroying your villi and causing your body to slowly degrade. Doing so could shed some light on other issues, make family more understanding to your issues, and help them out in the long run.    I was adopted at only a few weeks old, so my issues run a bit deeper with both leaning about this disease and getting anyone in the family to understand it. Does not help my birth mother still to this day refuses to release updated medical records or accept any kind of contact.    >.> I give advice all the time, I like to feel useful to others, and can be oblivious to others feelings and reactions due to a form of autism called Aspergers.  Bit of a pain, but the feeling of being of use to others is very rewarding even if sometimes confused with being helpful over being a ass or someone overly intrusive.    I just wish others had helped me out earlier with this disease.   PS Anonymous, you keep posting on older threads, ALOT recently. Not a bad thing, just something I picked up on and piqued my interest/concern with how out of date some information might be.
    • Hello Anonymous, and if nobody has said as much yet, welcome Don't worry (difficult to do when it can cause anxiety :P) it's very early days and you have a lot of healing to come.  If you've not already seen it there's advice and further info here:    It gets easier over time as checking becomes routine, you know your 'safe' products and your eating pattern changes. You'll get there  Maybe start a thread of your own if you'd like some input from others? Finally, back on topic. My Aunt has narcolepsy and although she's fiercely resistant to giving up gluten she has now made a connnection to eating bread and it's onset. As often, not conclusive but suggestive...
    • Hello again   Well first thing is the - Usual disclaimers apply... and this is something you have to follow up with your doctors as you know. But it's helpful sometimes to get another perspective so here's this layman see's from outside.  What I have seen from the various results posted here is that people's numbers vary wildly and, just as important, the numbers often don't bear any direct relationship to the level of intestinal damage revealed via endoscopy. Ultimately although you're not scoring much above positive, you are scoring a positive  and there are a couple of other risk factors you've mentioned that are suggestive if not conclusive - you have another autoimmune which raises the odds of having another one for example.  You've had two tests that are positive. The purpose of taking the second test was either to invalidate or confirm the first. I'd suggest it's achieved the latter, at least inasmuch as a GI may want to check you via endoscopy. That's still the 'gold standard' of celiac diagnosis and would give you an idea if there's any intestinal damage. I suspect with 2 positive tests and the history above that's what they'll suggest.  If your doctor or GI doesn't want to proceed with that you have a decision to make. Push for a second opinion or new doctor or if you're done with testing give the gluten free diet a proper try. Make a journal and see if some of those subtle things you reference may actually be symptoms. Fwiw, there are a lot of people here whose thyroid issues improved dramatically once they were gluten free, so whether celiac or gluten sensitive you should certainly give the diet a try. Only however once the testing is completed and remember: 
    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
  • Upcoming Events