To All You Possible, And Diagnosed Celiacs!

[danikali]

Okay, I'm getting really frusterated here. My whole family and friends, and I think possibly even my fiance think I have an eating disorder!!! Did anyone else have that problem before they were diagnosed? I have lost weight, and I do think a lot of it is because I got so "sick" of eating and getting SICK! (my stomach get so large, I look like I'm pregnant if I eat a few slices of bread and like 3 cookies!), so I ate less, more times in the day. But I still consume the normal calorie intake of like 2,000 calories, sometimes more!

Anyway, I have black and blue marks on my legs, and I am several days late on my menstural cycle(not pregnant, I took 5 tests, 99% positive), but I am also eating A LOT, especially, and mostly gluten this past month so I can get a positive on my tests next week and finally PROVE to everyone I'm not making this up!

Did anyone have this problem before they were diagnosed? Or does anyone have this problem now? I've been dealing with this for about 6 years now, and my mom (and doctors) write it off as stress and BLAME ME! Please write me back about your stories so I can SHOW my Mom (and family) that I really am sick and this is out of my control!

[ravenwoodglass]

Okay, I'm getting really frusterated here. My whole family and friends, and I think possibly even my fiance think I have an eating disorder!!! Did anyone else have that problem before they were diagnosed? I have lost weight, and I do think a lot of it is because I got so "sick" of eating and getting SICK! (my stomach get so large, I look like I'm pregnant if I eat a few slices of bread and like 3 cookies!), so I ate less, more times in the day. But I still consume the normal calorie intake of like 2,000 calories, sometimes more!

Anyway, I have black and blue marks on my legs, and I am several days late on my menstural cycle(not pregnant, I took 5 tests, 99% positive), but I am also eating A LOT, especially, and mostly gluten this past month so I can get a positive on my tests next week and finally PROVE to everyone I'm not making this up!

Did anyone have this problem before they were diagnosed? Or does anyone have this problem now? I've been dealing with this for about 6 years now, and my mom (and doctors) write it off as stress and BLAME ME! Please write me back about your stories so I can SHOW my Mom (and family) that I really am sick and this is out of my control!

<{POST_SNAPBACK}>

You poor thing I sure do know what your going through.  I dealt with the 'stress' diagnosis all my life, "here have a prozac"

I went through years of sickness, starting with depression and all year round 'poison ivy (DH) as a kid.  I got real sick  after my last child was born and then started 15 years of progressive illness and many, many tests that came up negative, including celiac panels.  Everyone told me over and over it was stress.  The only one who really understood how sick I was was my DD. I was finally diagnosed by an allergist. Listen to your body, if you feel better gluten free then be so, no matter what family and tests say. Your return to health should be 'proof' enough for them, it is for some doctors.  Wishing you the best, K

[Rachel--24]

It took awhile for my family and friends to realize how sick I was. For the first 2 years people werent taking me too serious because I "looked" fine on the outside. The doctors figured I was making it up too since the tests always came back normal. I started losing alot of weight the third year...it came off pretty fast so once I started "looking" sick EVERYONE took notice. Noone thought I was anorexic though...I've always wanted to gain weight..not lose it. I dont think the doctors thought it either because I had been going in for 3 years and at first I was normal weight. My doctor was concerened about the weightloss but just told me to go home and eat. HELLO..I was eating...I was eating tons of cookies, cake, ice cream, pasta, bread etc.

Didn't know about gluten back then.

I was at home for 2 years on disability and for most of that time people wondered if it was in my head or if I was suffering depression (I was crying everyday). I went to a resteraunt and got so sick I left and drove to my mom's...she took one look at me and decided to take me to the ER. This was about the time everyone started to take me serious. When I changed my diet changes were dramatic. My depression, brainfog and a ton of other symptoms were gone very quickly. I had been on strong pain meds for a year and since the day I changed my diet I havent taken a single med. I'm now back at work and everyone around me is VERY supportive. I've gotten lots of apologies...from the doctors too.

Interestingly every doctor recommended I see a psychiatrist...so did my friends and family. When I finally decided to go the woman told me I had a real physical condition going on that an antidepressant would not help. She said the doctors just hadnt figured out what was wrong yet but she could not help. She was the only one who had a clue and she only spent 1 hour with me.

Remember...you can still have a problem with gluten and NOT test positive for Celiac. If you tell everyone you *have* it and then the tests are negative...they will probably doubt you even more. Lots of people test neg. in the bloodtests but have a positive response to the diet. Also didnt you say you were off gluten for awhile? You would have to eat gluten for more than just a couple weeks to be sure the bloodtests are accurate.

[nogluten-]

People used to think I was anorexic and I never was. I'm still very thin and sometimes hear my grandma say in a stage whisper "she's too thin." It's very annoying. People commenting about a person being too thin is ok, but it's an insult to tell someone they're too fat. Arg.

[kelliac]

Did anyone have this problem before they were diagnosed? Or does anyone have this problem now? I've been dealing with this for about 6 years now, and my mom (and doctors) write it off as stress and BLAME ME! Please write me back about your stories so I can SHOW my Mom (and family) that I really am sick and this is out of my control!

<{POST_SNAPBACK}>

Almost everyone I know with gluten sensitivity has at one time or another been misdiagnosed. If it wasn't stress, it was IBS. If not IBS, it was "female problems". Not female, then it was "in your head". Only the LUCKY few, and I do mean LUCKY, were diagnosed early on and under treatment for gluten sensitivity before other problems started cropping up.

One of my daughters started losing her hair, had goiters, geographic tongue, and more while starting college. Yes, it may have coincided with a stressful time, but no one attributed any of those symptoms to celiac. But it was.

Another daughter had chronic hives, year round poison ivy (DH) like the other member just mentioned, bone pain, chronic diarrhea misdiagnosed as a "South American parasite" although she had never been out of the country at that point in her life, and so forth. She too has celiac.

Another daughter lost her hair, was diagnosed as "depressed" because she was chronically tired. Later discovered she was celiac and had severe anemia. She also had been in and out of the hospital with weird rashes and a variety of symptoms. She had diagnoses of angioedema, depression, allergies, cardio something. Her mouth had sores in the corners, her tongue looked like it was peeling (geographic tongue). She had mouth ulcers, bloody stools, you name it. Again, in and out of the emergency room with chronic appendicitis. CT scan just showed inflammed bowels. She was later diagnosed celiac.

My son was above average for height and weight until he was weaned. When he started eating processed foods, his growth slowed to the 10th percentile. Doctors diagnosed all kids with Failure to Thrive, tried to blame us, the parents. These kids ate well, often and everything. They weren't picky, but they didn't grow. When my son went gluten free (only in the summer when out of school and we controlled what he ate), he grew 4 inches. The next summer he grew another 7 inches. Coincidence, I don't think so. This is just some of the family with celiac. Have numerous friends that went from doctor to doctor with you name it. Finally, a gluten-free lifestyle made the difference. Doctors still don't want to believe it, they like prescribing prednisone and remicade. gluten-free foods don't require appointments and prescriptions. Who knows what keeps some doctors from diagnosing this awful disease. Hang in there no matter what the results of your test. You will feel better gluten-free!!!

[darkangel]

People commenting about a person being too thin is ok, but it's an insult to tell someone they're too fat.  Arg.

<{POST_SNAPBACK}>

Preach on, sista. Don't even get me on my soapbox about that. Growing up, I was tormented as much or more than any overweight child. When I was at my sickest, dxed with ulcerative colitis, I had so many people say, "You're so skinny! Why don't you just EAT?"

A friend of my next door neighbor saw me working in the yard in shorts on one occasion - I don't wear shorts out in public - and asked if I was anorexic, but anyone who knows me knows I'm not. I eat well and have always wanted to gain weight.

[Rusla]

I am your other end of the spectrum. I have gained 175 in less than 5 years and lost 11 teeth right now I still haven't healed from the last tooth pulled almost 3 weeks ago. I have burning in my stomach, diarrhea, migraine headaches and kidney pain with gluten. I will also get pimple like clear little blisters on my face and chest.

I am also casein, lactose, dairy intolerant.

My test came back gluten intolerant . However, I had been gluten-free for quite a few days so we have to repeat it in 3 months and I have to make sure I eat gluten for weeks before the test is done.

I have hypothyroidism which was discovered this year.

I always had a tiny waist but now I have a huge round belly, which I hate.

I hope you find someone to help you with this. Many of us are still struggling with doctors who think we are neurotic. Show your mother these stories, show your doctor these stories. Someone needs to hit the medical profession over the head and give them a wakeup call.

[danikali]

Thank you for the reassurance! I just feel so hopeless these days. New symptoms keep appearing, and you're right, no one believes me and they think it's all in my head because the doctors can't find anything.

So I've been eating gluten for maybe about a month and a half by the time I go to see my doctor next Wednesday. Even though I am getting major symptoms every day now being back on the gluten, you think the tests still may come back negative? I'm praying either the doctor or enterolab find something, just a little bit of proof that all my problems are related to gluten. I really am falling deeper and deeper into a hole. I just started a new job in July and I have already taken so many days off of work! And I also go to school at night, and feel sometimes like I'm falling behind because I'm always so tired, no matter how much sleep I get.

I was off gluten for a while, most of the spring and summer, except for hidden gluten that I didn't know about. And I did feel better, most of the time. But then it would hit me all of a sudden out of nowhere and I would feel like I was going to die! And yeah, people can hear me complain, but they can't see the pain, and I'm sure they are sick of hearing me complain, too. But what I am supposed to do? Just sit around and get more sick, not say a word, and let it get to the point where another serious disease is the outcome?

The holidays are coming up. I don't want to eat any gluten, and I know that I'm going to hear it. Sometimes I feel like I should lie to everyone about my results just so they believe me and stop making me feel so bad. What if I completely live on nothing but gluten for the next week and a half, couldn't that give me a more accurate result? And is there a time limit for eating gluten and not eating it for the enterolab tests?

[kelliac]

The holidays are coming up. I don't want to eat any gluten, and I know that I'm going to hear it. Sometimes I feel like I should lie to everyone about my results just so they believe me and stop making me feel so bad. What if I completely live on nothing but gluten for the next week and a half, couldn't that give me a more accurate result? And is there a time limit for eating gluten and not eating it for the enterolab tests?

<{POST_SNAPBACK}>

I feel for you. Only you can take care of you. I know it's hard to ignore others, but no matter what they say, you know how you feel, they don't. Make your own meal for the holidays and take it with you if you must. My in laws still don't understand (probably never will). So, I'm packing.

Jax Peters Lowell of the Gluten Free Bible spoke to our GIG group and told us a funny story. It's her three strikes rule. The first time you go to a friend/relative/neighbor's house to eat and they forget to cook something for you, it's ok. Everyone forgets, gets busy, etc. The second time they forget something for you, it's not as okay. In fact, it is upsetting but you can understand because it is still new for them. The third time they forget, you need to forget to come to their home from now on.

As for enterolab and how long you need to be off gluten, I can only speak for myself. I was what I thought 99.99% gluten free for over a year. However, my tests still came back positive for a lot of gluten in my diet. That was a real wake up call regarding my choices. Even eating all fruits and vegetables and meals prepared at home for the most part, I was still getting glutened somehow. They said it could have been higher before going gluten free and it may still be heading down to normal. However, I don't know how high it was so I'm going to retest next year to make sure it continues to go down. Here's hoping for your answer really soon. Good luck.

[danikali]

That's very true about people not understanding. In the long run, it's my body, so I've got to look out for my well being because I will have to be the one with the consequences, and it would be more hard just to say "sorry" to myself for ignoring my problems.

I do have another question about enterolab however. Do you ever hear of anyone getting complete negative results from them if the person being tested STRONGLY BELIEVES they are intolerant to gluten? I will just feel so let down if even enterolab gives me a negative result.

[Carriefaith]

Did anyone have this problem before they were diagnosed?

I had people confront me about my weight. For example, I was taken aside once and asked if I am ok, they were implying "are you eating". And I had some people telling me that I looked way too thin and didn't look good.

[kelliac]

I do have another question about enterolab however. Do you ever hear of anyone getting complete negative results from them if the person being tested STRONGLY BELIEVES they are intolerant to gluten? I will just feel so let down if even enterolab gives me a negative result.

<{POST_SNAPBACK}>

Which tests did you have done?

[danikali]

I just ordered (yesterday) the Gluten Sensitivity Stool Panel Complete. I couldn't afford the extra gene test right now, plus I figured the doctor would be able to find out if I am a "full blown celiac" right now, and I am depending on enterolab to see if I am gluten sensitive. (in case the doc. gets a negative.)

[kelliac]

I just ordered (yesterday) the Gluten Sensitivity Stool Panel Complete. I couldn't afford the extra gene test right now, plus I figured the doctor would be able to find out if I am a "full blown celiac" right now, and I am depending on enterolab to see if I am gluten sensitive. (in case the doc. gets a negative.)

<{POST_SNAPBACK}>

Boy, I wish you could add the gene test because it is so worthwhile. Even after being diagnosed via biopsy, I still thought in the back of my mind that maybe everything was due to something else. One doctor would say celiac, the next would say, I'm not thin enough. The next would say celiac, the one that did the positive biopsy said the biopsies were probably wrong. I was really confused. I finally met a great doctor who told me in no uncertain terms to give up gluten. I did it that day and never really looked back.

However, after reading online about enterolab (especially here in these posts), I just felt I needed more proof. Even though the diet was working small miracles in many different ways, I just wanted some written proof in my hand (although I knew in my heart I had gluten intolerance). The gene test was for double gluten sensitivity.

I have a funny feeling that enterolab will come back with something for you in terms of gluten sensitivity. People just don't spend the time and money when they don't deep down believe in something. If you feel strong enough to order it, you must feel you have something. However, if it does not, for some odd reason, giving up gluten is still the right thing to do. Just read all the signatures on this site that say they gave up gluten after reading Dangerous Grains. Hang in there.

[KaitiUSA]

I know how you feel. I had the same issue for a while and it was quite annoying. Nobody would listen to me...I would find another doctor if yours will not listen to you. You have alot of symptoms that are suspect of celiac so I would definitely consider it a possibility.

[danikali]

I'm sorry, I just have one more question, if you could help:

For the past week and a half, I am eating a lot of gluten, not too much, but more than I have in a while. (I mean, I'm not holding myself back like I would before, even though I would go back and forth a lot). Anyway, this past week especially, (not to be gross), but I am having extremely embarassing gas, and I'm usually really constipated, but I've been going almost every day now, but most of the time, I feel like I have to push it out, and most of it doesn't come. And then yesterday and today, I have both constipation and diarrhea, and not until I have diarrhea does the gas subside and my stomach feels better. I am also pretty late on my menstural cycle (not pregnant, I took 5 tests). Do you think this could all actually be from stress about the doc. appt. next week? Because my body is REALLY going haywire these past few days. I don't know how to tell if it's the gluten or stress. I know you're not a doctor, but if you could give me any input from your experiences. Thank you.

[kelliac]

Anything is possible. You could also have IBS in addition to celiac/gluten sensitivity. Why couldn't you have both? Celiac presents in so many different ways--that is why it is so mis/underdiagnosed. Go gluten-free after you send in your specimen, then you'll feel better.

[danikali]

I am your other end of the spectrum. I have gained 175 in less than 5 years and lost 11 teeth right now I still haven't healed from the last tooth pulled almost 3 weeks ago. I have burning in my stomach, diarrhea, migraine headaches and kidney pain with gluten. I will also get pimple like clear little blisters on my face and chest.

I am also casein, lactose, dairy intolerant.

My test came back gluten intolerant . However, I had been gluten-free for quite a few days so we have to repeat it in 3 months and I have to make sure I eat gluten for weeks before the test is done.

I have hypothyroidism which was discovered this year.

I always had a tiny waist but now I have a huge round belly, which I hate.

I hope you find someone to help you with this. Many of us are still struggling with doctors who think we are neurotic. Show your mother these stories, show your doctor these stories. Someone needs to hit the medical profession over the head and give them a wakeup call.

<{POST_SNAPBACK}>

wow! So you also have pain in your kidneys? I have SO MANY problems with my bladder and kidneys, especially when I eat gluten! Were you diagnosed by a doctor or enterolab? This is so interesting! Every problem I have, someone else also has somewhere in one of these posts. It's so good to see! (well, bad that we're all sick and not getting too much help) but you really start to think you're crazy until you talk to people with the same exact problems! Thank you everyone!

[Rachel--24]

I do have another question about enterolab however. Do you ever hear of anyone getting complete negative results from them if the person being tested STRONGLY BELIEVES they are intolerant to gluten? I will just feel so let down if even enterolab gives me a negative result.

<{POST_SNAPBACK}>

I think if you feel better off gluten and the symptoms go away when your're not eating it then you already have your answer. I wouldn't stress too much about the tests....stress will only make you feel worse. I think the people who test negative w/ Enterolab dont generally hang out on this message board. There is one person that I know of on this board who had negative results but she knows she cant eat gluten so she follows the diet. I think she was off gluten for awhile before testing. Dont remember how long though.

I wasnt eating gluten for 4 months before my Enterolab tests and they were positive. Enterolab tests will be accurate for you since you're eating gluten...the bloodtests may not be since you did go gluten-free for awhile.

[Rachel--24]

Doctors diagnosed all kids with Failure to Thrive, tried to blame us, the parents.  These kids ate well, often and everything

<{POST_SNAPBACK}>

How can "Failure to Thrive" be a diagnosis in itself?

My doctor wrote "Failure to Thrive" on my charts before I figured everything out on my own and went on the diet. He never tried to figure out *why* I wasn't thriving though. Also isnt "failure to thrive" usually in regards to kids who arent growing properly? I'm over 30 yrs. old...I was thriving just fine for 30 yrs...how could I just suddenly fail to thrive for no good reason!

[danikali]

How can "Failure to Thrive" be a diagnosis in itself? 

My doctor wrote "Failure to Thrive" on my charts before I figured everything out on my own and went on the diet. He never tried to figure out *why* I wasn't thriving though. Also isnt "failure to thrive" usually in regards to kids who arent growing properly? I'm over 30 yrs. old...I was thriving just fine for 30 yrs...how could I just suddenly fail to thrive for no good reason! 

<{POST_SNAPBACK}>

This alone proves that some doctors just should not be doctors. Some of them don't even have common sense! That's kinda funny, but kind of not! Who would even believe this excuse?

Also I want to add, does anyone else think that IBS doesn't really exist? Does anyone think that there is ALWAYS an underlying problem that needs to be dug up? Everyone I know who was diagnosed with IBS eventually gets more symptoms as they go on.

[ravenwoodglass]

This alone proves that some doctors just should not be doctors. Some of them don't even have common sense! That's kinda funny, but kind of not! Who would even believe this excuse?

Also I want to add, does anyone else think that IBS doesn't really exist? Does anyone think that there is ALWAYS an underlying problem that needs to be dug up? Everyone I know who was diagnosed with IBS eventually gets more symptoms as they go on.

<{POST_SNAPBACK}>

I had to answer this one, cause I agree fully. To me IBS stands for "I Be Stumped" (or stupid depending on my mood ). IBS , to me, means that you're left to suffer cause it is too much trouble to find out what someone is sensitive to. And much more profitable for them, after all as we get worse they get to hand us more meds, order more tests and see our faces (wallets) on a regular basis. Medicine is profit driven in this country, food intolerances don't make them any money.

[danikali]

I had to answer this one, cause I agree fully. To me IBS stands for "I Be Stumped" (or stupid depending on my mood ). IBS , to me, means that you're left to suffer cause it is too much trouble to find out what someone is sensitive to. And much more profitable for them, after all as we get worse they get to hand us more meds, order more tests and see our faces (wallets) on a regular basis. Medicine is profit driven in this country, food intolerances don't make them any money.

<{POST_SNAPBACK}>

This is so right! If there is anyone out there who knows someone who has IBS ALONE, nothing else, and there symptoms stay the same forever, and never get worse, please, let me know. I'd be shocked, but if you can prove me wrong.......

[kelliac]

wow! So you also have pain in your kidneys? I have SO MANY problems with my bladder and kidneys, especially when I eat gluten! Were you diagnosed by a doctor or enterolab? This is so interesting! Every problem I have, someone else also has somewhere in one of these posts. It's so good to see! (well, bad that we're all sick and not getting too much help) but you really start to think you're crazy until you talk to people with the same exact problems! Thank you everyone!

<{POST_SNAPBACK}>

Funny, a severe kidney infection was the first illness I could actually remember (I was 4 or 5). Every kidney infection and/or pain since has been linked by doctors to that early infection. All other tests ruled out kidney problems, but strange to see a celiac link. It is an ongoing problem but not so much now that I'm gluten free. My sister with celiac has had recurrent kidney problems all her life as well.