I Feel Like I Am Taking Crazy Pills

[KristinNicole]

Hello All.. I am a 28 yr old female that has had health issues .. well forever. To be honest with all of you this is pretty much my last attempt to try to figure out what is wrong with me. I have gone from researching all sorts of ailements and joining all sorts of health forums from IBS, to Lyme Disease and even MS. After massive testing and what feels like a trillion specialists and doctors.. "nothing is wrong with me" Every test comes back normal. Everything is fine.. its in my head .. or I have "Chronic Fatigue syndrome" something of that sort. I don't know. I am really honestly at my last straw and wits end. So I thought.. what the heck. So here I am. Who knows if anything will come out of this either but its not like I haven't been dissapointed a trillion times before So just like alll the other times I am sure I can handle it. *sigh*

My problems really started at age 13. I was diagnosed as being "anorexic" because I stopped eating. However I stopped eating because everytime I did eat I either got horrible diarreah or nausea or both. So I just stop eating all together. That is how bad it got. I lost tons of wieght obviously and Doctors said it was for attention and that I was depressed so.. Thats when the Depression and anxiety with IBS and GERD label was put on me and forever the reason for every health problem there after was the result of it according to all doctors. *shrug* *rolls eyes* whatever... So I go on like this until early twenties. Then I started having the motility issues with swallowing and such even neuro problems and dizziness. So I have seen Allergy specialists, Nuerologists, Three different Gastros, ENT docs... the list is endless. I appearently AM THE PICTURE of PERFECT HEALTH.. but why don't I feel like it????

I get nausiated within an hour of eating and it lasts for hours. This happens atleast twice a week or more. I am sure it depends on what I eat, However I do not keep track if I eat glutens or not.. but I don't eat fast or fried foods. I also try to stay away from sodas so I actually try to eat pretty healthy but my gut doesnt feel this way. I went like 10 years with constant diarreah and now for like the past year I am constapitated and bloated.. ALWAYS. Doesnt matter what I take and If I take a laxative even the gentle kind I cant get a consistancy.. because then I get cramps in my intestines and the loose stools. I am bloated to the point of where I look 3 or 4 months pregnant after I eat. The IBS meds don't help either. I tried them. I get also in the past few years a random rash all over my face, neck, back and arms.. and it will spread to my legs last. I get that usually once a month and will last from an hour to a few days. I have horrible brain fog and tingling sinsations in my back, gums and fingers. Honestly there is more symptoms but.. those are the main ones. I also was diagnosed with mild epilepsy this past year.

I had two endoscopy's done. One at 17 years old and one 10 years later at 27 so just last summer. nothing found besides a few polyps in my stomach caused by the prilosec I have taken for so many years. They said "everything looks fine" They took biopsies of the polyps but not of my small intestine because they said it "looked fine" my question is too I guess, is the damaged villi always veiwable by just looking at it? or could there be problems still with it looking "normal?"

So basically every night and Day after I eat I have to sit up hunched over for a few hours before doing anything or sleeping because I am so uncomfortable inside that I can't even explain it. I have tried over and over to explain how it feels to the Gastro's but they look at me like I am crazy. Just tell me all my tests look normal so take "laxatives and probiotics" for the IBS.... UGHHHH... they don't work. Sorry this turned into a story of me feeling sorry for myself to.. basically a rant. However.. regardless thank you for listening.

[caek-is-a-lie]

Oh my goodness! Well you don't need a diagnosis of anything to stop eating gluten! I say try it now! But make sure you memorize all those lists of tricky places gluten hides, or you'll be like me, thinking you're doing it right and kicking yourself for still being sick!

Keeping a food diary might help, too, because if you discover something later that you learn has gluten you can reference it... And you might have other sensitivities or allergies, too, that you're unaware of. I do.

If you can find a Naturopath in your area, I highly recommend seeing one. They have SO much more insight into these things than regular doctors do. I see one and she comes up with all sorts of ideas I'd never have thought of that actually help.

And endoscopes and blood tests can be false negatives as well. Sometimes they can miss the damaged part. They have to take a biopsy to verify damaged villi, so if they only looked with a camera but didn't take a piece to check in the lab, then it wasn't complete. Did they do a blood test? Do you know the results?

[KristinNicole]

Oh my goodness! Well you don't need a diagnosis of anything to stop eating gluten! I say try it now! But make sure you memorize all those lists of tricky places gluten hides, or you'll be like me, thinking you're doing it right and kicking yourself for still being sick!

Keeping a food diary might help, too, because if you discover something later that you learn has gluten you can reference it... And you might have other sensitivities or allergies, too, that you're unaware of. I do.

If you can find a Naturopath in your area, I highly recommend seeing one. They have SO much more insight into these things than regular doctors do. I see one and she comes up with all sorts of ideas I'd never have thought of that actually help.

And endoscopes and blood tests can be false negatives as well. Sometimes they can miss the damaged part. They have to take a biopsy to verify damaged villi, so if they only looked with a camera but didn't take a piece to check in the lab, then it wasn't complete. Did they do a blood test? Do you know the results?

Thank you for the response and help. To be honest with you I am not super firmiliar of what and where gluten is and where it can be found. I know I see more and more gluten free products in the grocery store.

I like the ND's but they get kind of spendy. Since I do have insurance that covers NDs however I have to pay out of pocket first and wait for a refund from my insurance company and ends up being a real pain in the you know what! but yes I do like the Naturopath Doctors better. I am so tired of having so many chemicals and meds in my system.

Holy.. I have had soo much blood taken for random things that I honestly don't know at this point exactly WHAT they were all for!! all I know is I always get a letter in the mail a week later stating all came back negative for.. whatever it was they tested it for. I know they did a blood test for H pylori and such once or twice. Thats all I know and remember. They did not do a blood test though at the endoscopy center.

[caek-is-a-lie]

It would have been an antibody test specifically for gluten.

You can find a basic list of things to avoid here Open Original Shared Link scroll down and there's a handy chart.

ND's can be expensive but my local ND college has community clinics that are cheaper than my insurance co-pay, and they discount supplements, too. It's a huge relief since I don't make a ton of money.

[KristinNicole]

It would have been an antibody test specifically for gluten.

You can find a basic list of things to avoid here Open Original Shared Link scroll down and there's a handy chart.

ND's can be expensive but my local ND college has community clinics that are cheaper than my insurance co-pay, and they discount supplements, too. It's a huge relief since I don't make a ton of money.

Thanks I may look into other clinics and such for the NDs.. Thank you also for the list! I am seeing my .. 4th Gastro in Seattle here in a few weeks. Hopefully I can get that antibody test. Who knows. Like every other blood test I seem to get it will most likely be negative. I am used to it!!

Thanks again for your help and responding... I have horrible insomnia right now.. even though I spent the entire DAY in a larthargic fuzz.. now I can't sleep at all. Its all so very frustrating.

[mushroom]

You should ask your doc to run the full celiac panel, if you havenot already had it done, including IgG, IgA, TtG, IgM, and EMA. Your doctor should be familiar with these. You story certainly sounds a familiar one hereabouts. I often wish all doctors would read this forum to learn what they should do with these symptoms. However, a word of caution; it is possible to have celiac disease with negative blood work; unfortunately there are quite a few false negatives--the test is not perfect. Make sure he does the total IgA, because if this is low it can throw off the other results.

If you want the blood test remember you should keep eating gluten until after it has been run, and if a biopsy (uhh!) is recommended you will need to keep eating it until after that too.

To answer one of your questions, it is not always possible to see villous damage with the naked eye; it often takes a microscope to see it and then only if they biopsy an area that is damaged, which is why they should take several samples (at least five).

[quietmorning01]

Wow. . .gee, you sound so much like me!! (((hugs you))) - you sound like you're on the right track - that's a good thing. . .but also, even if this proves NOT to be Celiac disease. . .there are soooo many things that can go wrong with a body. Doctors tend to specialize, and they don't look at the WHOLE picture any longer.

May I suggest that you do a food trial once you get a hang of cutting the gluten out? I'm going to do this after I've been gluten free for a couple of months as all sorts of food allergies run in my family.

Dealing with something that's hard to diagnose: I'm 46, I've been midiagnosed with serious serious stuff since I was a teen - all the diagnosis proved to be wrong. . . every single one. I've even gone to see a psychiatrist to 'prove' I had an emotional disorder. . .after evaluating me, he winked at me and told me there was nothing wrong with me, the doc's were just trying to cover their behinds - to keep looking, I had his support. I stopped taking it personally when I was in my late twenties - and fire the docs if they get patronizing. Sometimes playing their game can be a good thing. . .it weeds out the docs without the tenacity. There's too much that they can't possibly know about to even think that they can possibly have all the answers, they are, after all, only human. Getting THAT idea across to them, however is a fruitless task - but it's their issue, after all, isn't it? Your issue is simply your health and taking care of your body. That isn't theirs. . .it never will be theirs in the same capacity as it is for you.

I hope you've come at the end of the road for what is wrong, and can changing your diet will be the answer! Boy, is it wonderful to feel healthy finally! But if you find that this is not the answer, please don't give up on yourself. People have died because they were frustrated with the medical field. . .it's those that have the will and push to keep going that find themselves to survive what ails them.

Good luck!

[caek-is-a-lie]

I've even gone to see a psychiatrist to 'prove' I had an emotional disorder. . .after evaluating me, he winked at me and told me there was nothing wrong with me, the doc's were just trying to cover their behinds - to keep looking, I had his support.

LOL! I did the same thing. I agreed to do a full week of psychological testing if the doc I went to would just refill the prescription I was taking at the time. They must've run every test imaginable trying to find some hidden trauma in my past to explain my symptoms. Their conclusion? PTSD from seeing doctors! rotfl I wish I could have seen the doc's face when he got the report.

[rinne]

Hi.

I believe you.

Obviously your digestion is challenged, going to a very simple diet, chicken, fish, vegetables and some fruit and keeping a journal may help you to figure it out.

In my opionion and I am not a doctor, doctors diagnose damage and prior to the damage being done we are sick but the tests show nothing. We have to trust ourselves and take our health into our own hands, diet is one thing we can do and diet makes a huge difference.

[serenity0607]

i totally identify with you so much i have had issues since i was about 13!!! and they all played it off as just lactose intolerant which i know i do have but i stopped or tried to stay away from milk , cheese and i love them both but i do drink lactaid milk!!! but i do have problems with gluten i know that for sure i know it seems like your going around and around trying to figure out whats wrong!!! just keep your faith up !! you will find an answer

[home-based-mom]

Thanks I may look into other clinics and such for the NDs.. Thank you also for the list! I am seeing my .. 4th Gastro in Seattle here in a few weeks. Hopefully I can get that antibody test. Who knows. Like every other blood test I seem to get it will most likely be negative. I am used to it!!

Thanks again for your help and responding... I have horrible insomnia right now.. even though I spent the entire DAY in a larthargic fuzz.. now I can't sleep at all. Its all so very frustrating.

I suggest you send a PM to board members "tarnalberry" who lives in the north end and/or to "cruelshoes" who lives in the south end for recommendations.

Hope you feel better soon.

[KristinNicole]

Thank you everyone for your kind words and words of hope! It is very encouraging.

I know that I won't give up on myself but pretty much if its NOT celiac. I am going to try to jus live my life the best I can. As hard as that is. I have spent the past 3 years trying to self diagnose myself. Looking into celiac.. everything makes sense. I began getting sick as a baby, I would have raised rashes all over my body and vomit, I was rushed to ER several times I guess, only to be given a steriod and told I had some sort of allergy but it was never looked into by my parents because it seemed to go away as I got older. However I was always sick.. always tired as a child. Never healthy, have had a compromised immune system. Always was very small as a child and had slow growth and could never gain weight. Then there was the depression and anxiety. So I have also been seen by many different counselors and taken all kinds of antidepressants. I have had MRIs, CT scans, Gastric emptying scan, EKG, EEGs, ultrasounds, get bloodwork drawn for random reasons every dr visit so like once every couple months, tested for lupus, RA, stool samples for parasites, bloodwork for anemia and hyperthyriodism due to very large lymphnodes in neck.... everything...all of this- negative. So yes.. I feel so crazy sometimes. I sometimes will sit quietly and wonder if it IS indeed in my head?!!but I feel genuinely sick... all the time.

I know too that I don't need a diagnosis to change my diet but in a way I do. I miss alot of work due to this stuff and in order to help me through FMLA. I need diagnosis in writting so I dont lose my job due to my health. Right now its for my mild epilepsy and IBS. I would give anything just to KNOW finally.

[wendstress]

I believe you, too.

Did you mention epilepsy in your original post? Celiac can lead to neurological issues, including seizures.

I'm new to Celiac, but the things you have described certainly ring true to me.

PM me your email, and I can send you a list of "Things a Celiac can eat Right Away." It is a list of 80-90 name brand items that are gluten free and you can buy without hesitation at the store. It was very helpful to me right in the beginning as I was beginning to get the hang of this thing!

Even if the bloodwork comes back negative, you can still try going gluten-free and see if it does anything for you. If gluten is causing the problem, you'll feel relief in just a few days.

My story:

I went to my PCP complaining of 9-12 months worth of diarrhea. He ordered lots of blood work, and fecal analysis. Don't even know what all he ordered..... The tests results trickled in and everything was negative, until I got the results for the TTG IGA. High positive.

I clumsily went gluten free over the next several weeks and slowly felt better. Didn't realize I was also suffering from fatigue, and abdominal cramping. Also realized that Celiac causes Depression; I had started on an antidepressant last summer.

I went in for an Endoscopy/Colonoscopy in March for confirmation as well as to rule any other conditions out. Celiac Dx was confirmed through biopsy, and I also found that I have Lymphocytic Colitis.

I'm doing pretty well with the gluten-free diet, and have learned that there are alternatives for just about everything I like to eat. I'm slowly feeling better.... Not 100% yet, but it will take some time to repair the damage.

[Nancym]

Gah! No you can't see celiac damage with the naked eye, especially if it isn't severe. You have to take biopsies and stain them and look at them under a microscope. Sheesh! Stupid doctors.

Anyway, try a strict gluten free, and I'd suggest casein free, diet for awhile and see if it helps. Casein is found in dairy products (milk, cheese, yogurt). Lots of people have trouble with both.

[KristinNicole]

Thank you. I just called the gastro specialists office I went to this last summer for the endoscopy. They confirmed that no blood work was taken for celiac nor was any biopsies taken of the small intestine only of the polyps and the esaphagus. I rescheduled with a new doctor since my doc ended up retiring the DAY of my endoscopy.

I went to a ANRP nurse after the endoscopy to talk about the EGD. I was only dissapointed she told me everything was ok and looked fine and that I just have IBS and to take Amatiza for constipation with a probiotic called Align. That was last year. Nothing has helped that she gave me. So I called today and told them I really didnt want to see her again. lol. So I am to see a new gastro that is taking over my other docs patients. I hope that he listens to me. My appt is in two weeks.

Yes I do have epilepsy. It does run in my family. However I feel that my grandmother was celiac too just never diagnosed. She in her last 5 years of life had developed epilepsy out of no where. She would have these bouts of confusion followed by violent vomitting. Which docs said were a form of seizure which I am sure they were right but I remember taking care of her and noticing her stomach ALWAYS looked distended. She was diagnosed with cancer however so no doctor would look into anything further. Everything was always "a result of the cancer" they never even gave her anti seizure meds so every month like clock work she would be hospitalized due to siezures. They did .. nothing for her. She ended up passing away from phnuemonia because she aspirated her own vomit. Doctors really make me angry sometimes.

[Mtndog]

I'm so sorry that you've been through SO much.....I think you'll find a lot of us have! You're in good company.

Definitely send messages to tarnalberry and cruelshoes for recommendations. The best part about going gluten-free is that it CAN'T hurt (but wait until after you see the GI).

[ang1e0251]

I would suggest to you to ask for a copy of your test results every time a test is performed on you. Keep your own file. It can be very enlightening to see your own test results. What sometimes is dismissed as normal range, can be a very low normal. For you that could mean symptoms occur at that level.

I recently asked for a copy of my DD's test results from 8 years ago. It was no problem and I received them in the return mail. You can go back for all your test results over the years, if you choose. Even if your test results are negative, you could still be gluten intolerant which will not show up on any test. In that case the gluten-free diet will still benefit you. Keep that in mind as you go through further testing.

Keep us posted. We care that you are hurting and will help where we can.

[KristinNicole]

I would suggest to you to ask for a copy of your test results every time a test is performed on you. Keep your own file. It can be very enlightening to see your own test results. What sometimes is dismissed as normal range, can be a very low normal. For you that could mean symptoms occur at that level.

I recently asked for a copy of my DD's test results from 8 years ago. It was no problem and I received them in the return mail. You can go back for all your test results over the years, if you choose. Even if your test results are negative, you could still be gluten intolerant which will not show up on any test. In that case the gluten-free diet will still benefit you. Keep that in mind as you go through further testing.

Keep us posted. We care that you are hurting and will help where we can.

Its funny that you mention that because I just decided the other day that I was going to make my own file of every test I have had. Keep it all in a file from all the doctors and specialists. Not that I know what I am looking at but maybe if I take them all with me to every new doc I see. someone will see something that was overlooked? I hear about this alot actually.. so yes. I most likely will be doing this.

[HelpinOhio]

Your story is also very similar to mine. Im a guy and 18 years old though. You can read my other threads to see most of my story and all the things I had to go through. I started having bad problems a little before my 12th birthday and its been horrible ever since. Most of the time like living very sick in a fog, and sometimes like in a waking nightmare. Im effected by the mental and physical auto-immune response of the disease.

Im about at the same place as you as far as the diagnosis. Ive also been through many tests over the years and just about all of them came back negative. Out of the many things Ive been tested for, only thing that came out of it is Low vitamin D and constipation, which can both be symptoms of something bigger. I got blood tests done about 5 days ago and should have the results back in 2 weeks, I also have a upper endoscopy scheduled in 3 weeks. Im hoping to get a positive diagnosis, but either way Im going gluten free after the results come back.

My advice to you is this: You are an adult now and there is nothing stopping you from going on a gluten free diet. It cant hurt. However, if you want the correct diagnosis than you have to eat a good amount of gluten everyday for a few months before the tests for Celiac Disease are done. Preferably 4 pieces of wheat bread a day for 2 months. Do this before the blood tests and the upper endoscopy. Even with that a lot of times there are false negatives. Which means you have it, but it doesnt show up on the tests. In this case, the only way you can be sure is to go completely gluten free for a few months to start and see how you feel. If you have Celiac Disease or a gluten intolerance, you should start feeling better as soon as a few days or a few months. You have to make the decision whether you want the tests done properly and the diagnosis, or you just want to try and go gluten free. If you do decide to go gluten free though, make sure you really arent eating any gluten. Find the list of ingredients that contain gluten (its over 100 ingredients), and make sure you dont eat any of those.

What you describe does sound a lot like Celiac Disease to me. Try for that and whatever happens, dont give up. If you do indeed have Celiac Disease, you are lucky in finding it this early. There are many people on here who didnt find out they had it until they were 50-70+ years old. You are not alone in this, trust me. And most of all, just good luck and I hope you find whats wrong with you soon.

[gfb1]

Gah! No you can't see celiac damage with the naked eye, especially if it isn't severe. You have to take biopsies and stain them and look at them under a microscope. Sheesh! Stupid doctors.

Anyway, try a strict gluten free, and I'd suggest casein free, diet for awhile and see if it helps. Casein is found in dairy products (milk, cheese, yogurt). Lots of people have trouble with both.

just a brief note on casein; casein is a VERY "sticky" protein and can also be found as an adherent in all sorts of foods that are coated with a flavoring (think: doritos). labelling has gotten much better in the US over the last year (thanks to the hard work of lots of people/groups), but can still be a bit difficult to maneuver.

i know this is routine for the old-timers in the group, so i apologize in advance for duplication/repetition--

as you try to eliminate either/both gluten and casein from your diet -- be extremely watchful of the labelling. similar products from the same manufacturer can be very different in composition. also, the companies change formulations depending on the price of ingredients. if you are eating any flavored/processed foods -- even if you've been eating it for years (assuming gluten/casein free); check anyway.