Does Anyone Feel Like Me?

[JessicaB]

Well as you can see on my signature, i just recently went to georgetown university for a second biopsy. Well it came back negative no damage! Once again i was told since my bloodwork came back positive, i prob have celiac, well guess what, prob is not enough for me. I told my doctor that i want a diagnosis! He said in order to diagnose me i would now need to get the bloodwork done again to see another positive result. Should i get it done again?

Also... I dont have any friends who understand my weird cravings, my sudden attitudes, my upsetting moments. Ive been gluten-free from dec to jan, off the diet from jan to feb and now back on forever! I would like to make some close friends that i can talk to, mail letters, call on the phone. Does anyone feel this way. I just wish i had a few friends that i could pick up the phone and say hey how was your day and just vent to.... Well my email address is mckaylaslove@aol.com.

Maybe anyone who has anything else in common?? Im 22yr old female, live in Maryland. One beautifull daughter, 20 months old, McKayla, married.

Please let me know and tell me a little about your experience, diagnosis and personality,

Thanks!!!!!!!!!!!

[Claire]

I know all about wanting a diagnosis. After awhile people around you begin to think you are at least imagining things, over-reacting or are just a hypochondriac .

I have been many years fighting the hopelessly incompetent medical world. Every conclusive test I ever had for anything I requested myself (former Rehab Therapist).

I know I have multiple food intolerances.

I know I have a mild pulmonary insufficiency.

I know I have spinocerebellar ataxia [gait and balance disorder). MRI shows cerebella degeneration. I do not yet know why and think I may never know.

I know I have had years of anything from acute to chronic dizziness and nausea and a weird swaying feeling in my head. That awful 'swaying' feeling has virtually disappeared since I went gluten-free last August.

I know I do not have Celiac Disease. This is by endoscopy. Blood work not valid because of long term gluten restriction and gluten free status since summer. Negative genetic test done also

I don't know if I have non-celiac gluten sensitivity. Yet to be tested.

I have lost 25 pounds in less than a year. I now weigh 103 lbs. I have pushed for every conceiveable test - not my doctor - but me. Test results confirmed H. pylori bacterial infection of the stomach lining. Can't say for sure that is the cause of the weight loss but it is a likely candidate. Still searching. A couple of more tests to go.

I tell you all this just to encourage you to be aggressive in your own behalf.

I would redo the blood work - but request a different lab do the screening.

Do either of your parents have celiac or celiac symptoms. I would have the genetic test for celiac if you believe that is what you have. Enterolab has a test that tests for both celiac and non-celiac gluten sensitivity. With all the info you should have something conclusive.

Claire

[Lisa]

Jess:

I hope that I can call you Jess, or Jessica if you prefer. Celiac is a hard road to follow without support from friends and relatives. I have no relatives around me and many of my friends are following differents issues in there own lives.

That is why this site for me is so important. If I have a question about food, it will be anwered, as well as medications, feelings, depression, hunger or lack of it, relationships with friends, work mates, relatives, significant others, pains and aches, D or C issues, traveling....just to list a few, I can come here and it will all come clear to me.

Whatever you are going through, 9 times out of 10, someone here has been there and done that.

Do not feel alone, we have all been there no matter what our ages are. This is a support group that heps each other and it always gives me a great piece of mind that there are others out there that are going through the same thing that I am. Just because they aren't our neighbors or friends that we come into contact with we are here to help. And to top it all off, I know I have gained some very dear friends.

This is the best place for you to arrive. Check us out, ask away.

Hope this give you a little security, like a warm blanket. -------Lisa

[JessicaB]

What a warm blanket! I feel a little better now. Im having a hard time now not eating junk! Chocolate, icecream, gluten-free candy! Its hard for me. I guess i will get the hang of all this stuff soon!

[mouse]

If your bloodwork was positive and high to boot, why do you have to do another bloodtest? My understanding is that there is not any false positives, only a false negative is possible. And if you have been gluten-free for some time, I would think that that would scewe the blood test. I am sure that someone else will post and address this. If your bloodtest is positive then you have Celiac. But, what do I know, my brain is about as foggy as they get .

Oh, I forgot to ask, how many areas did he take biopsies from? I think they now recommend that they take 8 to 10.

[penguin]

The IgA is 98% specific to Celiac disease, and I think the TtG is also. If your bloodwork is positive, you have celiac, bottom line. Your dr's are using outdated information, Georgetown or not... Don't do another biopsy!

Here's my story, since you asked:

I'm 22, married, and my 2 kids are covered in fur, have long tails, and meow a lot

I had some stomach problems when I was little and my brother and sister went away to school and I was about 6. They did a bunch of tests and didn't find anything, I just had a sensitive stomach. All throughout adolescence, I would wake up in the middle of the night about once a month, throw up in the bathroom, and go back to bed. It was wierd, but I never thought much of it.

Fast forward to my first year of college. I go home after the spring semester finals, and I come down with horrible fever, pain, nausea, etc. Mom rushes me to the ER, and they find full blown mono. Two months later, I get over that and go back to school, 15 lbs lighter.

During the year, I notice that I have D a lot. Like, almost every day. Just loose happenings in the bathroom. I still don't think much of it, I thought it was dorm food doing it to me. This goes on for a long time, and I rarely, if ever, have a normal bm.

The next year (junior year), I go out to dinner and then I get back to my DH's room (then bf), and my stomach starts hurting, a lot. DH's roomate suggests I try going to the bathroom in case it's gas. It's not, I throw up and am curled into a ball. I go to the ER, they can't find anything wrong, and send me home with narcotics. I would get these pains every few weeks for the next two years. I'm also anemic and have elevated platelets. Nobody can figure out what's wrong, and they tell me it's stress or acidic foods. I move off campus and cook my own food, but still I have D every day. I avoid orange juice, tomatoes, and those kinds of foods and still get the crunching pain in my stomach. It would last days. It was horrible...

I went to a GI doc and he did an endoscopy, he was looking for GERD damage. He found a tiny ulcer (which I know was from abuse of ibuprofin), and irritation in my stomach lining. He sent me home with nexium, and that was that. When the pain came back again near the end of nexium treatment, his nurse tells me I'm taking it wrong, and would never return my calls again. I ended up in the ER at least 4 more times, and each time I got sent home with narcotics and a shrug.

Last summer, DH and I got married and moved to Austin. Once I had a job, I found a new internist (the best kind of GP, IMO) and she at least gave the pain a name "pyloric spasm." She have me phenergan for the pain when it happened and an antispasmodic to take. In January, I googled one of my symptoms and came up with celiac. I went to see my dr and asked her if I might have problems with food. She said it was probably IBS, but that she'd run a Celiac panel. Only my IgG came back positive, and she put me on the diet. She said not to do an endoscopy because it's too invasive and dietary response is just as valid.

I went on the diet and haven't looked back. I went to see her a month after going gluten-free and I explained to her how I was feeling better already and what happened when I had accidentally ingested gluten. That, I guess, was enough for her and she made the official dx. I have almost normal bathroom habits now and I don't have to abandon a shopping cart in the middle of a store to go to the bathroom. I continue to have bad gluten reactions, and I only take the antispasmodics when I need them. I'm so glad it only took three years to dx, I can't imagine the time others have had to put up with.

You'll find all kinds of friends on this board, including me

[Guest Robbin]

Jessica, I have felt the isolation, frustration, self-doubt, and dispair that I read in your post. You are not alone --you have many new friends who will help you through this. I think I would have lost my mind over the past two months if it weren't for these fantastic people. I hope you will consider us all your friends and any questions, or just plain venting you have --we are in this together!! God Bless!

[MallysMama]

Maybe anyone who has anything else in common?? Im 22yr old female, live in Maryland. One beautifull daughter, 20 months old, McKayla, married.

Please let me know and tell me a little about your experience, diagnosis and personality,

Thanks!!!!!!!!!!!

Jessica,

I have a lot in common with you!! I'm also 22, married (just had 3 year anniversary), and have one beautiful daughter, Mallory, who is 19 months old. However, I live in Las Vegas and have had Celiac my whole life. I recently joined this message board because I have not been following the gluten-free diet very well and I became a little worried about what it was doing to me. So, I did some research and happened upon this wonderful, helpful board. It's added a little bit more stress to my life (all the things I found out - that I didn't realize before)...but hopefully if I make the necessary changes - it'll be worth it! I almost feel as if I've just barely been diagnosed - just like a lot of the people who join. Since I was just around 18 months when I got the official diagnoses....I wasn't the one the doctors told everything to. And so much has changed since 1984/85! It's like I'm learning all about something I've had my whole life. Anyway- whatever your circumstances are - there's someone here that can understand where you're coming from and be able to offer some type of help.

You're more than welcome to email me - or just reply in messages here - whatever is easier for you. (You can click on the "Card" at the bottom of my response and then click on the email link.) Everyone is so helpful here and they are so good at being gluten-free!! I'm not sure how much help I am - but I don't mind listening and offering what support I can give.

-Karleena

[nettiebeads]

If the bloodwork came back positive for celiac, you don't might just have it, you have it. How did you feel on the gluten-free diet? and did you feel different off? I never had any of the tests people here have had. I went to my gp with D, he put me on the gluten-free diet, and voila! No D, dx of celiac. No other dr since has questioned his dx. (well, except one but she had no clue about celiac) The diet challenge is a valid diagnostic tool. My current gp wouldn't have me eat gluten to get a test done to confirm the original gp's dx. He thinks that the current tests used aren't sensitive enough to be considered reliable. I know what happens to my body on or off gluten, and that's enough for him.

So, IMO, go gluten-free for at least one month and see how you are. Be sure to check EVERYTHING that you come in contact with for gluten - shampoos, toiletries, cosmetics, meds.... gluten is everywhere! If you haven't already, cut out diary for at least three months. Celiac damages the villi where the enzymes to digest diary products are produced.

Keep us posted, and hope you're feeling better.

Annette

[gfp]

Well as you can see on my signature, i just recently went to georgetown university for a second biopsy. Well it came back negative no damage! Once again i was told since my bloodwork came back positive, i prob have celiac, well guess what, prob is not enough for me. I told my doctor that i want a diagnosis! He said in order to diagnose me i would now need to get the bloodwork done again to see another positive result. Should i get it done again?

Also... I dont have any friends who understand my weird cravings, my sudden attitudes, my upsetting moments. Ive been gluten-free from dec to jan, off the diet from jan to feb and now back on forever! I would like to make some close friends that i can talk to, mail letters, call on the phone. Does anyone feel this way. I just wish i had a few friends that i could pick up the phone and say hey how was your day and just vent to.... Well my email address is mckaylaslove@aol.com.

Maybe anyone who has anything else in common?? Im 22yr old female, live in Maryland. One beautifull daughter, 20 months old, McKayla, married.

Please let me know and tell me a little about your experience, diagnosis and personality,

Thanks!!!!!!!!!!!

Well I couldn't be less like a 22 yr old female living in Maryland but I can certainly sympathise.

You are still young so perhaps your villi are still fighting back faster than being destroyed, perhaps you didn't eat enough gluten prior to the biopsy? Either way chances are you can continue making yourself sick until the biopsy is good enough or just accept the fact, its not like you are missing prescription medication...

My mother is biopsy confirmed but I only got blood work which was +ve...

I went gluten-free and have no intention of going back for a certificate, that prevents me being officially celiac in the UK but so what... I feel 10x better and if I slip I know in a few hours.. that's enough for me.

If you are lucky enough to have your villi still and its not a poor biopsy interpretation or you didn't eat enough gluten then good luck to you...

[key]

If your blood work was positive, then you have celiac in my opinion. Don't listen to the doctors if you want your health back! It is hard I know. I had borderline blood tests and had a ton of self doubt and even cheated after I started feeling better thinking it was ALL in my head. Then felt worse and that really set me back big time! I have 3 little boys under the age of 6 years. I homeschool my oldest Kindergarten.

How is your health now?? Do you have any support from family? I have to agree that if anyone doubts whether you have celiac, you need to be matter of fact and just tell them that you do and you choose to be healthy. It is your life and not theirs. You don't need to be sick for them. Also I know how hard it is to not be able to eat out as much with friends and enjoy that aspect. If you are in MD aren't there alot of restaurants and health food stores near you?? I don't know what area of MD you live in, but we are moving to Columbia MD this summer in JUly. We will only be living there for a year, but if you ever want to get together that would be great?

Email me anytime you want to chat. All of us are here to listen and offer support.

Chelse,

I enjoyed reading your history and how you were diagnosed. Thanks for sharing the whole thing with us.

Monica

[CMCM]

Well as you can see on my signature, i just recently went to georgetown university for a second biopsy. Well it came back negative no damage! Once again i was told since my bloodwork came back positive, i prob have celiac, well guess what, prob is not enough for me. I told my doctor that i want a diagnosis! He said in order to diagnose me i would now need to get the bloodwork done again to see another positive result. Should i get it done again?

Also... I dont have any friends who understand my weird cravings, my sudden attitudes, my upsetting moments. Ive been gluten-free from dec to jan, off the diet from jan to feb and now back on forever! I would like to make some close friends that i can talk to, mail letters, call on the phone. Does anyone feel this way. I just wish i had a few friends that i could pick up the phone and say hey how was your day and just vent to.... Well my email address is mckaylaslove@aol.com.

Maybe anyone who has anything else in common?? Im 22yr old female, live in Maryland. One beautifull daughter, 20 months old, McKayla, married.

Please let me know and tell me a little about your experience, diagnosis and personality,

Thanks!!!!!!!!!!!

When I came to this I already knew from my mom's experience how basically clueless and incompetent the majority of doctors are to recognize and diagnose celiac OR gluten sensitivity. It was obvious I wouuld spend a lot of time to say nothing of money chasing down tests and doctors, and a bit of reading on my part made it obvious that I could very well be celiac yet might test completely negative with the currently used blood tests. What was the point, I knew how I felt on and off gluten, but I did want some sort of confirmation. That's why I decided the best and cheapest way to get an answer was thru my own efforts. I completely bypassed the traditional medical system and went directly to Enterolab....where for a very reasonable $369 you can get a gene test to find out your two genes, the IgA and Ttg antibody tests via stools and not blood tests (stools can reveal the presence of an antibody reaction for up to a year after you have stopped eating gluten, and will show the antibodies in many cases where a blood test would be negative. You also get a malabsorption test to show if intestinal damage is occurring. And as an added thing, you get a casein sensitivity test, which is useful because a lot of celiacs are also casein sensitive. With this knowledge from the Enterolab tests, you will know what you need to know, and in most cases unless something additional is going on that must be dealt with, there is no reason to spend your money with the clueless medical community which doesn't know up from down with celiac disease. Why insist on a "yes" from people who are feeling around in the dark? Why waste your money with them yet if you get a false negative, you continue feeling sick due to eating gluten and/or casein? Don't believe that you have to have a DOCTOR tell you "yes", because the fact is they DO NOT KNOW EVERYTHING, contrary to what some people may think! They don't know and don't bother to find out. The ignorance about celiac disease is astounding, to say the least. If we who suffer from it can find out so much information so easily, why on earth don't the doctors find out or even have the curiosity? It's baffling, but that's the way it is. I'm just thankful for the existence of the internet where we can take things into our own hands and find out what we need to know without depending on a profession which has failed us so completely.

My mom almost died from clueless doctors who told her it "was all in her head." Not one doctor, but a string of probably 20 doctors over nearly a 10 year period told her this and watched her waste away. It was finally ONE doctor who did know and who saved her. Just one out of 20.

One more comment: Remember that the biopsy can confirm celiac but doesn't rule it out. Intestinal damage can be patchy and easily missed since only random sites are examined, not the whole intestine. So the biopsy rules in celiac but doesn't necessarily rule it out. Your blood test shows antibodies so you have something going on. Be thankful the damage may not be so great at this point. Why on earth wait until the damage is widespread? Waiting is like having a doctor say "Well, you have a tiny little tumor but let's wait until it's HUGE and spread all over your body before we'll diagnose it." Stupid stupid stupid in my opinion, so my advice is don't fall into the idea that everything your clueless doctor tells you is accurate. Be your own advocate, and be knowledgeable about this condition. Be 100% proactive for yourself.

The diet is as easy or as hard as you choose to make it. It's all in the attitude, and it just isn't hard unless you make it so and fight it. You can find a healthier way of eating, and for treat, there are acceptable substitutes.

Hang in there!

[Susan123]

I always had a positive IgA bloodwork but no damage even after a gluten challenge of a year. So I was diagnosed gluten sensitive not celiac. This diagnosis came from one of the top Celiac researchers. You mentioned Georgetown... Are you close to University of MD? You might want to make an appt with the Celiac Research Center if you want more information. This is the way it was explained to me. Positive bloodwork alone is not enough to say Celiac. THe golden rule of diagnosis is still a positive biopsy. Now many factors can influence a biopsy like not eating gluten long enough before the test. I have had two biopsy over a two year period of eating gluten and still nothing so hence the gluten sensitivity. There is still not enough evidence per the celiac research center to suggest that gluten sensitive individuals will develop celiac any more than someone not gluten sensitive. Basically it is still good to stay away from gluten which is what I am doing but it really is a personal decision only you can make. Bottom line does gluten make you feel bad? Enough to stay away from it.. only you can judge.

[key]

The whole Biopsy thing for a positive diagnoses is just SO irritating to me. If you have positive blood work, then that should be enough. Why do they care! They are hurting many people by their stubborn attitudes. If they would just tell people that they probably have it and should follow the diet. This IRRITATES me BIG time. I had the blood work done after two months gluten free. THe doctor called and said my test results were borderline for celiac. THen said I needed the biopsy. I didn't want to follow through with it without eating wheat and he said, well you can follow the diet and still cheat! Then he tells me my next visit that it was "probably" just IBS and the only way to tell was to eat wheat for even three days before the biopsy. THis is SO wrong! So I make myself sick over this, thinking that I need this MAN to tell me that I have celiac in order to be gluten free. After all of this, I KNOW I can't eat gluten and don't care what he says, but he could have been telling me he thought I probably did have it, instead of demanding the biopsy. THen he told me the gene test wouldn't tell me anything, so there was no point in doing it. I also went to this doctor for heartburn. I had started taking the Prilosec on my own, so he said to just stay on it. I asked him about H.Pylori and he said that it was something that people over 50 years old get.

He hasn't helped me AT ALL!!! ONly caused me needless pain for having me doubt I had celiac disease.

Ok, I am done.

Monica

[JessicaB]

Wow! Thanks for the replies everyone! I feel so comforted. Well my doc did call me today and said regardless of the biopsies do the gluten-free diet so i am, and its for eva! I feel good knowing i have made so many friends in such a short amount of time. Thanks everyone, and keep me posted on new things. THanks again!

[tiffjake]

Hi Jessica. My name is Tiffany. I am 23 and also "interviewing for friends" LOL! I have lost many recently. Changing jobs and the way I deal with people has put a cramp in many of my friendships. Here is a brief Celiac history:

1-ALWAYS had IBS or sensitive stomach. No med helped. No doc helped. EVEN AT 10 YEARS OLD I was told to "calm down" and I wouldn't have to run to the bathroom after dinner out with my parents.

2- Fast forward (married almost 4 years) and I develop really bad acid reflux and asthma. Doc says the asthma is from the acid reflux at night (the fumes synging my lungs before I sit up to take a deep breath).

3-I get worried about food causing it. I order an Lame Advertisement test

4-Results showed gluten and casien, along with a few other things. I looked up gluten online, having no idea what it was, found this board (along with many other sites) and then went to my doc about the posability of celiac.

5-He sent me to an allergist (idiot)I went gluten free then (after a horrible meeting with an allergy specalist who tells me to try the elemination diet, which included bread from the start).

6-Then had the enterolab testing done (my doc did order blood work, but it was "inconclusive" because I had been gluten-free for a couple weeks by the time he could see me)

7-After all of the tests, the genetic one too, I found out from my father that his mother died from Non-tropical sprue, another name for celiac, with holes in her intestines by the time that they caught it. Wish I would have known that before!!!!!!!!!!

Anyway, like I said, I am 23, married for almost 4 years (6/9/02), no kids yet....want them.....by my husband has spent more time in Iraq than he has home....so havent had anyone to "make" them with! LOL I am in Texas (not by choice, though, it is not the place I hated 3 years ago. It has grown on me). PM me anytime! Love to get to know ya! Tiffany

[Flyingmango]

Jessica,

I'm 26 and married and live in Alexandria, VA, probably not far from you. I was diagnosed a year ago, and have had difficulty navigating and finding support until I happened on this website yesterday. I've been looking for support groups in our area, but haven't found any yet. Whole Foods, Trader Joe's and Weggmans (out by Dulles airport) have great gluten free products. Please e-mail me anytime at jwattsl@yahoo.com. It would be great to have someone close by that I could talk with!

Jennifer

[danikali]

Jessica, first I just want to say, WOW! Someone who is my age and married! I'm so happy to see that because I'm engaged and people look at me like this when I tell them my age. They look at me like I'm doing something wrong....

Anyway, I live in NYC, I'm 22 in a couple of months, (so you're same age) and you can e-mail me anytime! Danikali22@hotmail.com. I would love if you vent to me, and I can vent to you too! My fiance listens, but will NEVER understand, so it's not the same as when I come on this board or talk to someone else who has been there done that.

Also, on another note, I want to say that our small intestine is 24 FEET long (7 whole meters!). So that's why I don't get why doctors take the biopsy as the 'gold standard.' I feel like, unless practically the whole intestine is damaged, you're not going to get a positive result for Celiac! It kind of makes me mad because, what if all of the people out there who are gluten sensitive really DO HAVE Celiac Disease, but because their biopsy came back normal, they don't take it as seriously. I feel like it's impossible to check every little inch of the small intestine through 2-5 samples. What about the 'hard to reach' spots?

I also don't like how you have to eat gluten to get a positive test, and in your case, ANOTHER POSITIVE TEST. Did you notice a difference off of gluten? If so, THEN YOU HAVE IT! Why don't they just test your genes and dx. you through that?