A Case Of The Crazies, Brain Cooties...

[Phayah]

I know this is ridiculously long and 90% of you will never read it but I must get this off my chest.

I've gone through a lot of misery and soul searching since I've had my first child. He really made me realize that I'm not actually a normal human. I have so much guilt over not being a good parent because I always feel like crap. I swear sometimes I feel like I just need crawl in a hole and bury myself because I'm so useless.

Since I was very little, maybe 5, I have been labeled a hypochondriac. I'm now 27. I have always thoroughly believed it was the root of all my problems.

(TMI) For my entire life, I've had chronic constipation, gas, bloating, impacted stools, hemorrhoids, bleeding, reflux, fatigue, and so many things - not digestive. My mother was on the opposite end - extreme "D" (accidents, etc). She always led me to believe chronic digestive problems were perfectly normal. On the various occasions when I saw a doc I would ask about it and they always gave me antacids, told me to eat better, more fiber, etc. I tried very hard but nothing consistently worked. Fiber was a nightmare for me (even more gas/bloating/continued constipation) and everyone always looked at me like I was an idiot when I told them that. I mostly gave up and continued on with life.

During my unexpected pregnancy things changed a lot. I was no longer constipated?! Something else was different too though. There was a different texture and color but I was so happy I wasn't constipated I didn't care. I ended up developing the big "D" and had to be medicated for a little while due to the doc's fear of dehydration. I honestly didn't think I could get pregnant. I had been married/with the same man for 7 years and we had little regard for precaution.

After I had my son, things didn't really change too much. I was either "C" or "D" all the time but it wasn't really an important issue to me. I feel uncomfortable discussing it with doctors because they look at me like I'm stupid. So, I only went to the doctor for the most serious and debilitating problems which were determined psychological (anxiety, panic attacks). I've mostly been seeing psychiatrists for the last 5 years and they've been tossing various pills at me.

My mom was diagnosed with multiple sclerosis about a year ago. She had been going to the doctor for years for vertigo and they kept telling her it was "inner ear problems". Before her diagnosis, she called me and told me she had been in bed for days because she couldn't walk. I was so terrified but also ANGRY at her doctor. I began researching possible causes and I called her back. I asked her to go to the ER and demand a brain MRI. She did and after a couple of months of tests she was diagnosed with MS. Through my research I've learned that unrecognized Celiac disease is a possible cause of MS.

Several months after I had my son I began experiencing a strange new symptom. When lying down in bed if someone brushed against me I'd get a numb/tingling feeling. I thought perhaps it was bad circulation and dismissed it. Then one morning I woke up and my entire chest, head, and face had the same strange buzz going on. I got up and tried to calm myself but it wouldn't go away. After a little while I called my doc and they told me to go to the ER, which scared me even more. The ER doctor was about to write it off as stress since it wasn't characteristic of stroke but decided to run an electrolyte panel. My magnesium came back as low and I was given a supplement and Ativan (benzo). At the followup with my primary doc she recommended a brain/spinal MRI, upper abdominal ultrasound, and various blood tests. All were normal, although upon receiving copies I noticed my basophils was high and urea nitrogen low (it was not mentioned). My TSH was low but followup tests indicated T4/T5 were normal.

Neither of the medications got rid of the problem. The Ativan helped take the edge off my fear but the sensation persisted. I just wrote it off as stress and continued to take benzos to alleviate the stress I had when the sensation returned. It seems episodic but most often occurs when I'm lying down and only if/when someone/something touches me.

Things just kept spiraling downhill for me. My fatigue and lack of motivation were unbearable. I wanted to be happy, playing with my son, teaching him new things, taking him places but I could barely get myself to shower. Thinking perhaps it was still all in my head I started researching psychological causes. It seemed my journey through life lined up perfectly with that of a person who might have undiagnosed ADHD. After an evaluation my psychiatrist confirmed the diagnosis. I was put on medication and finally felt my life might make a turn for the better.

After a month on medication, I mustered up some will and determination to tackle my weight problem. After some research and a book written by Gary Taubes I decided to adopt a low carb diet. I had been well over 200 lbs for 5 years or so. Several years ago I had a sudden weight gain of around 80 lbs in less than 6 months. It eventually rose to around 252 lbs. I'd tried so many diets, particularly low fat/low cal and nothing worked. Well, on my low carb diet I noticed dramatic results. I have lost over 55 lbs in about 6 months. It has greatly diminished and I'm beginning to worry I might be stuck forever. One thing to note was my digestion was finally regular but never appeared quite normal.

Due to my weight loss success, my husband and I decided to start having "cheat weekends" once a month. We mostly just order pizza, soda, chicken and munch out. After a couple of months I noticed some cognitive decline, increasing fatigue, and my ADHD medicine seemed to stop working. I guess it's called "brain fog". It kind of feels like the aura you get before a migraine. I've had chronic migraines since I was 10. This was different because it was persistent and not always followed by a migraine. My migraines became more frequent as well.

I always feel the best right when I first wake up and it gets worse until I "sleep it off". Another thing that has followed the same pattern is throat tightness or perhaps a "lump" that docs say is related to anxiety. It seems a bit episodic. The first time I remember having it was around 12 years of age. I have never found the answer to why I would have so much anxiety. I've had a good life, a loving husband, and now an awesome little boy.

During the last few months of living in fog I've also developed even more symptoms. I'm losing abnormal amounts of hair (visible thinning), acne, eczema, cysts, milia, memory, focus, confusion, and increasing fatigue. I've had a copper IUD in for over a year and (TMI) I'm STILL spotting with extremely heavy periods. They've also become irregular. I just had to go see the doc because I was so sick from my last period I almost had to go to the ER (almost passed out). It lasted 8 days. Right before that I'd had an annual checkup/pap (normal). Thursday, they ran a bunch of tests (blood/urine) and I haven't heard anything yet.

I've been researching everything from possible copper toxicity caused by the IUD to lupus. I just kept digging and now I feel like I might have some direction. I have no idea what's wrong with me but I have to do whatever I can because the docs don't seem to understand. I've found so much research about families riddled with various autoimmune diseases so I started looking at the possible connections. The one thing that keeps sticking out in my mind is Celiac disease. It seems like the only condition that fits everything.

When I tried to trace my diet back to when I began having multiple debilitating symptoms I noticed a few differences. I was on a very strict meat, dairy, and veggies diet for 3-4 months but I began adding things into the mix. I started buying a new Atkins bar that contained whole grain rolled oats and I ate it for breakfast every morning. I also started buying low carb tortillas that contain wheat. Our cheat weekends were no longer every month but every two weeks. Occasionally, I would have a bite of one of my 18 month old son's snacks. He loves to feed people, lol. It was never more than maybe a cracker though.

In all honesty, my initial reaction was that I was malnourished due to the low carb diet. The majority of "health authorities" claim it's unhealthy. My doc didn't think that was it but she really seemed dismissive either way. At the checkup I requested a referral to a GI doc about my throat/reflux issues and a referral for a neurologist for my migraines.

It has been a month since those two appointments. Last Thursday I had to go back to my OB/GYN nurse due to the menstrual issues. She ordered more blood work and gave me an antibiotic prescription, on the off chance an infection is causing my early/prolonged period. She has no idea about the rest of course. I still needed blood taken my doc ordered at the annual checkup (earlier that month) so I got it all done that day.

I've felt so bad I haven't even bothered to make the appointments for the GI doc and neuro. Finding out there might be hope for me yet has renewed my conviction to go. I will be making those appointments! I'm also going to request the antibody testing and biopsy. Perhaps the neuro might want to check on my copper level too, who knows? I just hope there's an answer and I'd love a solution.

Do you think I'm just a hypochondriac? Or do you think it's possible Celiac made me a hypochondriac? =D

[ravenwoodglass]

You could certainly be one of us. However are you still doing a low gluten diet? If you are you need to go back to eating gluten before you can be tested for celiac. Give it a good 3 months with at least the equivalent of 3 to 4 slices of bread a day. Keep in mind that even after the gluten loading you could still have negative tests. After all your celiac related testing is done then do a strict trial of the diet for at least a couple months and see if it helps. If your Mom hasn't been tested and is still eating gluten it would be a good idea to suggest she get tested also.

[Bubba's Mom]

You've been through a lot! If you read the threads here you'll find that most of us have gone undiagnosed for quite a while. Dr.s just don't think to look for Celiac.

Not much time is given to it in med school. It's still considered a rare disease by some..and those that do think of Celiac just think of the classic "failure to thrive" in babies, D, wasting away. If you happen to be one of those people that get neuro symptoms,are over weight,have C, and anxiety or brain fog, most Dr.s won't recognize it as Celiac. Even Neuro Docs don't think of it!

So many of your symptoms sound like gluten could be your problem?

I completely understand the feeling of being dismissed as just a hypochondriac. I am newly diagnosed and my PCP doesn't believe the DX! My blood tests came back negative, but I was in such bad shape that the GI specialist did an endoscope and found the damage.

I've had years of illnesses and lots of tests, but they were testing for the wrong thing so of course it looked like nothing was wrong on paper..it must be in my head then, right?

To be tested for Celiac you have to be actively consuming it for a while. Otherwise your blood tests will be negative, and once again the Dr will just think it's one more "hysterical grasping at straws" for a DX.

Some of your symptoms could be from vitamin/mineral deficiencies, and your homones can get out of whack too.

It's up to you whether you want to go through the testing or just go on a strict gluten-free diet. That means no cheating. Eat foods that you have made yourself, and read labels. Get a new cutting board, don't use any scratched non stick pans, get a new toaster,and a new can opener. Check your toothpaste and shampoo for gluten ingredients. Wheat protein is in a lot of shampoos.

The best way to go is to shop the outer perameter of the store..fresh fruits and veggies, non processed meats, and dairy if you tolerate it. Some of your symptoms are like those I get from soy as well, so consider the fact that you could have more than one sensitivity going on?

I recommend keeping a food log. Write down what you eat and any symptoms you have. Some reactions don't happen immediately. They can show up a day or two later and that log could help you figure it out.

Read about Celiac disease so you know what you're dealing with.

Good luck to you! I hope you sort out what's going on. It's just awful to feel bad and get no help from Dr.s.

[Phayah]

My first thought was that I had a food allergy but I didn't have typical symptoms. Either way, I did stop eating the bars that were causing me trouble. I had to because I ate them in the morning so they pretty much ruined my whole day. At my checkup the doc told me my sinuses were inflamed which was a surprise. I have post nasal drip, tinnitus, and ear congestion (that she didn't see), but not a runny/stuffy nose. She gave me Flonase but I haven't improved. I think the Flonase makes the tinnitus worse and I've mostly stopped taking it. The flesh in my nose is completely red. My reflux came back and even though I started Prilosec it didn't help. I've never had heartburn, just chest pain, reflux, and tight throat. I stopped taking the Prilosec a week ago because I was afraid it might contribute to malabsorption of vitamins/minerals if I was deficient.

I've been doing a lot of research on Celiac disease and the connection with multiple sclerosis and it seems like I might be one who would have to eliminate dairy as well. I eat a lot of dairy. My mother has an appointment next week and I asked her to get the antibody panel for Celiac. She agreed. I'm in the middle of our "cheat weekend" right now so I'm eating a lot of gluten. I have to go back to low carb for my weight issues but I will probably still be eating some gluten and a lot of dairy. Maybe I could start eating the gluten bars before I go to sleep.

My symptoms are so severe I will be dumbfounded if they find nothing unusual in the CBC/electrolyte panel. I already know if my periods get any worse I'm likely going to end up in the ER. I almost passed out, several times. I literally felt like I was bleeding to death. My problems could be caused by the copper IUD but it makes sense that having Celiac could have had an impact on a copper/zinc imbalance. It would also explain the parasthesia I was getting before the IUD, not to mention my entire life.

When I was pregnant I kept telling the doctors I was having persistent pain under my ribs (left side). One doc said, "There's nothing there. That's just your intestines." So, I thought "doh, gas". After pregnancy I continued having the pain but it was on the right side (mostly). That's why they did a full abdominal ultrasound (normal). Now it's just extreme bloating and intermittent cramping, particularly in the upper abdominal area. It almost feels like I'm pregnant again.

My brain fog is also extremely disturbing although it's slightly better when it's not that time of the month. I have it ALL the time in differing degrees of severity. It makes me want to crawl in the bed and close my eyes just to try to escape it.

I'm constantly dehydrated. No amount of water helps. It just goes in and comes right back out. Before I thought of Celiac I assumed I might have an electrolyte imbalance so I also asked for a blood test for that. My hair falling out is freaking me out too. My scalp is dry/scaly and sometimes I have a weird burning/painful sensation. I have muscle tension in my neck/shoulders that also burns. It's the strangest thing.

My mother truly believes something is wrong with me. She told me to listen to my instincts and don't let the docs ignore me. She used to tell me to get over it (lol)! I really hope she tries out the diet after her test. She supposedly has remitting/relapsing MS but I swear she seems worse every time I talk to her. I'm so afraid it's some kind of dementia that's getting worse. It will be so hard for her to do the diet because she is over the top crazy about bread. She once told me if that was all she could eat she'd be perfectly happy. =(

I've been reading through threads here and everything seems to fit me so well. I ran across a post with a picture of a baby who had "allergy cheeks" and it looked just like my son. He often has those red/splotchy cheeks, particularly after eating. His breakfast, snacks and some of his "convenience" meals contain gluten. My end game plan before I ever heard of Celiac was to convert to a Paleo type diet for the whole family so I will only have to struggle with the dairy part. My son is too little to care and my husband has been doing low carb with me. I'm fairly certain if I had never started a low carb diet I would never have noticed the relationship between food and how I feel.

It will probably be a while before I see the GI doc and neurologist, maybe a month. I will be checking in here though. =D

[Skylark]

I just read the GAPS diet book. You mention feeling better low-carb. Perhaps this is a solution that might help you? The idea is that all these vague, unconnected symptoms, including gluten intolerance, are a result of out-of-whack gut bacteria. It runs in families because the bacterial imbalance is passed from mother to child at birth. The symptoms are different for everyone because nobody has the same set of problem bacteria and yeasts. On top of that, we've pretty much forgotten how to eat correctly and mistakes like too much grain, too little meat and fish, too few and the wrong kinds of fats, and improperly prepared grains and beans leave us somewhat malnourished.

I'm on day 5 of GAPS and the brain fog and fatigue are already starting to clear! If nothing else, the book is a real eye-opener about nutrition and how your digestive system works (or should work). Open Original Shared Link

[Di2011]

The idea is that all these vague, unconnected symptoms, including gluten intolerance, are a result of out-of-whack gut bacteria.

Until the 80s medicine didn't think there were bacteria in the stomach so there must still be so many unknowns.

I consider myself lucky that I developed a stomach ulcer in the 90s - soon after they released to public the antibiotic that gets deals with the bacteria. After months of pain, it took two days of that medication to be symptom free.

Open Original Shared Link I think anyone with GI issues should be aware of this bug. Please read this page!!

[Phayah]

My mother's appointment is tomorrow and she will be asking for the blood test. She is also very interested in trying a gluten/casein free diet to see if it might help, regardless of the test results. I will update. =)

[Roda]

Why not have your regular doctor run the celiac panel now? That way when you have your GI appointment you'll have that done.

[Phayah]

Why not have your regular doctor run the celiac panel now? That way when you have your GI appointment you'll have that done.

Well, I have thought of that but I'm just so tired of all the appointments. It doesn't help that I feel like crap.

I will make my appointments for the neuro and GI tomorrow though. There will be a "consultation visit" with the GI doc before any procedures are performed. I was hoping I could request the blood test then?

I guess it depends on how far out my other appointments will be scheduled. If it's a month+ I will probably see about getting the tests sooner.

I really wish I had discovered all of this before my appointments. I would have been able to get it all done in one lab visit!

[ravenwoodglass]

Well, I have thought of that but I'm just so tired of all the appointments. It doesn't help that I feel like crap.

Call your doctors office and ask to speak to a nurse. Often you won't need an appointment to request celiac testing if this is your regular doctor as his records will show the problems you have been having. You should be able to just pick up a lab slip or the doctor can call in the request. Keep in mind though that since you have been low gluten you tests may very well be a false negative. When you see your GI do let them know you have been very low gluten. The doctor may tell you that you have to do a challenge. I know you want to stay low carb because of the weight issue but the weight issues may be part of your symptoms with gluten. Many of us gain weight with celiac although most doctors think we will be rail thin if we have celiac. I was the heaviest I ever was in my life the last few years on gluten. Going gluten free strictly resulted in so much weight loss so quickly I was worried it would never stop but it did. I am in my 50's and have been the same weight I was as a teen now for over 8 years.

[Phayah]

I can't believe this! My mom said she went to her doc and when she asked for the blood test he acted very strange. She said he seemed shocked or freaked out?! Then, he said that he had never tested anyone for Celiac disease! The man has been in practice for at least 30 years. He said he was very interested and that he would be doing some research on the subject. She had her blood taken and her followup will be Nov 28th.

I called the GI doc earlier and they said we wouldn't be doing a consultation visit. I'm only going in for the upper endoscopy (EGD?). It was originally for my reflux and throat tightness but I asked about Celiac disease and they said they could perform a biopsy during the procedure. Anyway, they are supposed to call me back to schedule it.

I also called the neurologist and scheduled an appointment for my migraines and other neuro symptoms but it isn't until Dec 6th. =(

[Phayah]

Blah, I finally mustered up the courage to call my doc and request a blood test but the clinic is closed! I guess they've got Halloween business to take care of. Hopefully, I can keep my resolve and do it tomorrow lol.

[MoMof2Boyz]

Blah, I finally mustered up the courage to call my doc and request a blood test but the clinic is closed! I guess they've got Halloween business to take care of. Hopefully, I can keep my resolve and do it tomorrow lol.

Hi there. I really hope you can get this figured out...if it is not gluten that is causing your symptoms, please get tested for lyme disease. YOu can check out the symptoms and see if they sound anything like yours ....I"m not saying you have it but it is something else to look into...I've also read that Lyme disease can mimic Ms. That's something I didn't eve know about til a few days ago and you can have digestive problems too,neurological symptoms and more. Just wanted to throw this out here as something else to possibly to check into.

[Phayah]

Hi there. I really hope you can get this figured out...if it is not gluten that is causing your symptoms, please get tested for lyme disease. YOu can check out the symptoms and see if they sound anything like yours ....I"m not saying you have it but it is something else to look into...I've also read that Lyme disease can mimic Ms. That's something I didn't eve know about til a few days ago and you can have digestive problems too,neurological symptoms and more. Just wanted to throw this out here as something else to possibly to check into.

I think it's highly unlikely I've ever been bitten by a tick. I'm a very bugaphopic person and I like to stay indoors a lot. Perhaps when I was very little but I'm 27 now. I don't think enough of the symptoms match up.

My mother was tested for lyme disease before her MS diagnosis. She actually was bitten by a tick several years ago. She had to go the ER because her head was so swollen. I believe they tested her then too and gave her shots of antibiotics.

Thanks though! =D

[Lette]

I am also gluten intolerant and to top tha off I just found out that I have an intolerant to onions, which I absolutely love and can't cook with out them. This is miserable medical condition and affecty life big time. I love sex (TMI) and it seems this condition affects my sex life because of the bloating and stomach pain makes it miserable. I do my best to stay off gluten products, although it's kind of hard when bread is served with every meal in a restaurant. I wanted to let you know that your mother doesn't have to stay off of breads, whole foods has an excellent selection of gluten free breads that is made from brown rice flour. There are also pizza restaurants that server gluten free pizzas which are delecious. It's a bet hard first for people that love breads and pasta but now it seems that they are coming put with more and more gluten free food. However, like me you may be intolerant to other things too, not just gluten. I found out about the onions because it seemed that every tome I went to Dennys for breakfast I would order the fit and fare white egg omelet and within 15 minutes to an half hour I was in the bathroom. I googled it and sure enough there are quite a few people with onion intolerance. It seems that the bread is no problem since they are making gluten green breads but I have not idea how am I going to stay away from onions especially when I love to cook things like gumbo! Ignore any typos I posting from my phone lol...

[Phayah]

Yeah, bloating and pain makes things a lot less enjoyable. I also love onions! I have often wondered if they might contribute to my migraines, eggs too. =(

I'm thinking if we are sensitive we might have to stay off casein as well. There are strong links between MS and dairy. Plus, I read that 50% of people with celiac/gluten sensitivity also have problems with casein (not to mention other things!). Crazy stuff...

I have my upper endoscopy scheduled for Friday at 9:00 AM. She scared me a little because she said it had been labeled as "urgent" and she also was recommending a colonoscopy as soon as possible based on my symptoms. I'm really afraid of being put to sleep for that. =(

I'm a little confused and worried that she was so quick to schedule these procedures. For 27 years my doctors just gave me laxatives, antacids, or tell me to eat better and I went on my way.

[ravenwoodglass]

If you can try to get the doctor to do both procedures at the same time. That way you will only have one copay for the anesthesiologist and the procedure room. Don't be concerned that the doc is getting you in so quickly some of us have to continue suffering on gluten for a couple months before we can get in. If you have been gluten light then you have an even stronger chance of a false negative and even on gluten the chances of a false negative are higher than we would like. After the procedures are done go strictly gluten free. You don't need to wait for the results.

[Phayah]

Yeah, she wanted to try to do them at the same time but then she saw "urgent". So, she asked if I wanted to come for the endoscopy on Friday while they get approval for the colonoscopy because it would take longer to get. Luckily, I don't have a copay but it kinda sucks because my husband has to take off work.

Could a colonoscopy show evidence of Celiac disease as well? Do you think doing both procedures reduces the chance of a misdiagnosis? I know Enterolab has the stool test for "gluten sensitive" but is that something I could have checked at the doc's office or is the blood test just as good? I was also thinking of going back to my regular doc and asking for an autoimmune screening in case it's something else.

PS - I got in a huge argument with my brother because he thinks "asking for tests" makes me a hypochondriac. I was so mad. This is the first time in my life that I've felt maybe I'm not a hypochondriac. I've always just tried to ignore my symptoms because I honestly believed I was crazy and it was just anxiety related. Ugh... =(

Oh, I saw an article recommending long term migraine sufferers to get screened for Celiac disease. Nothing but Imitrex injections help my migraines.

[ravenwoodglass]

Yeah, she wanted to try to do them at the same time but then she saw "urgent". So, she asked if I wanted to come for the endoscopy on Friday while they get approval for the colonoscopy because it would take longer to get. Luckily, I don't have a copay but it kinda sucks because my husband has to take off work.

Could a colonoscopy show evidence of Celiac disease as well? Do you think doing both procedures reduces the chance of a misdiagnosis? I know Enterolab has the stool test for "gluten sensitive" but is that something I could have checked at the doc's office or is the blood test just as good? I was also thinking of going back to my regular doc and asking for an autoimmune screening in case it's something else.

PS - I got in a huge argument with my brother because he thinks "asking for tests" makes me a hypochondriac. I was so mad. This is the first time in my life that I've felt maybe I'm not a hypochondriac. I've always just tried to ignore my symptoms because I honestly believed I was crazy and it was just anxiety related. Ugh... =(

Oh, I saw an article recommending long term migraine sufferers to get screened for Celiac disease. Nothing but Imitrex injections help my migraines.

Ignore the brother as it isn't going to do you any good to get angry with him. Brothers can be a real pain even into adulthood. Heck any family can be hard to deal with at times.

A colonscopy will not show any evidence of celiac disease it is the endo that you need for diagnosis. Enterolab testing can be part of the diagnostic picture for some folks but it is not in itself diagnostic of celiac. It can tell you if you are producing antibodies. It is not a test available through your doctors office as far as I know. The blood tests are conclusive if they are positive but not if they are negative. After you have the blood tests taken and the endo done then go ahead and go strictly gluten free. Please be aware that if you are already gluten light or gluten free your chances for a false negative are pretty high. Even on gluten you can have a false negative.

I hope the endo gives you some answers and make sure you keep eating gluten until the test is done.

[Phayah]

I have been eating maybe 1-2 gluten items every day for the last few months. I just had a 3 day gluten feast. I did go about a week without though. I've suspected for a long time I may have issues with dairy, eggs, soy, and/or various food sensitivities due to my relentless migraines. I guess I never really believed in the food connection until now. The problems I've been having the last year are kinda freaking me out so I'm getting serious about figuring it out.

I've been on the low carb diet about 6 months. I started having serious problems again a few months ago but I didn't think it might be related to food until I looked back. At first I thought it was an allergy but then I ran across Celiac which could explain almost everything. So, I did some investigating and found out the bars contained wheat. It seems like I added the low carb tortillas and bars around the same time my problems started.

Do you think that will be enough? I've had serious digestive problems since childhood and now neurological.

Either way, I've had most of the symptoms my whole life. I just developed new ones (24/7 brain fog) and the old ones are becoming worse. I also have two new symptoms that just developed within the last few days. I'm having an internal trembling in my chest/back?! The other is swollen glands but it comes and goes. It could be related to drainage as I've had this many times throughout my life. I don't really want to think about what else it could mean.

My symptoms could fit almost any autoimmune disease and some of them don't seem to appealing. Considering my family history (both sides) and risk factors I could end up with 1 or more. I just hope if I do have one, it's Celiac, because I can do something about that one. =D

The only other thing (besides autoimmune) I could think of as possibly causing the new problems in the last year is: extreme psycho or metal toxicity/sensitivity. I have had numerous fillings, root canals, and oral surgery. I also have a copper IUD + serious menstrual problems.

Do you think it would be over the top if I asked my doc for ANA and metal toxicity screening? Surely my CBC and other tests would be off if something like that was going on?

As a side note, it really pisses me off that I've had to spend all this time trying to figure this out. I wish docs could be more thorough and spend more time with patients who have systemic symptoms.

[Phayah]

I'm SO angry! I called to schedule an appointment with my regular doctor. The woman asked me what the problem was so I told her the new symptoms I was having. She said, "Are they related?" I said, "I don't know. Isn't that what the doctor is supposed to figure out?" She said, "Well, if it's not related we have to schedule separate appointments." I replied, "Well, I'm not a medical doctor so I can't tell you if it's related or not." WTF?! I'm so sick of this.

[Nen]

Geez, like you are going to make 10 different appointments for each symptom? What is with that nurse? It is kind of amazing how apathetic it seems how the medical field is becoming. Almost like no one cares to try to get to the root of the problem, just throw pills at you that won't really fix anything at all.

I hear ya though, I've through the years have had symptoms that have popped up (have had IBS for 10 years, then sinus problems added in, and just in the past year balance issues and body aches/pains that come and go). I am only 28. I just drag myself through life pretty much.

[Celtic Queen]

I got in a huge argument with my brother because he thinks "asking for tests" makes me a hypochondriac. I was so mad. This is the first time in my life that I've felt maybe I'm not a hypochondriac. I've always just tried to ignore my symptoms because I honestly believed I was crazy and it was just anxiety related.

You are the best advocate for your own health. And you have every right to ask for whatever tests you think will make your feel better.

Iwas the one who asked my GP to run a celiac panel, not the other way around. A lot of other people on these boards found out either by asking their doctors for the test or by deciding to go gluten-free without any tests.

Ignore your brother. Follow your "gut" instinct.

[Skylark]

I'm SO angry! I called to schedule an appointment with my regular doctor. The woman asked me what the problem was so I told her the new symptoms I was having. She said, "Are they related?" I said, "I don't know. Isn't that what the doctor is supposed to figure out?" She said, "Well, if it's not related we have to schedule separate appointments." I replied, "Well, I'm not a medical doctor so I can't tell you if it's related or not." WTF?! I'm so sick of this.

Luv, lie thorough your teeth. "Yes, they're related." Obviously it needs to be sorted out in one appointment and if your doctor needs more time he/she will tell you to make a followup.

[Sam81]

My first thought was that I had a food allergy but I didn't have typical symptoms. Either way, I did stop eating the bars that were causing me trouble. I had to because I ate them in the morning so they pretty much ruined my whole day. At my checkup the doc told me my sinuses were inflamed which was a surprise. I have post nasal drip, tinnitus, and ear congestion (that she didn't see), but not a runny/stuffy nose. She gave me Flonase but I haven't improved. I think the Flonase makes the tinnitus worse and I've mostly stopped taking it. The flesh in my nose is completely red. My reflux came back and even though I started Prilosec it didn't help. I've never had heartburn, just chest pain, reflux, and tight throat. I stopped taking the Prilosec a week ago because I was afraid it might contribute to malabsorption of vitamins/minerals if I was deficient.

I've been doing a lot of research on Celiac disease and the connection with multiple sclerosis and it seems like I might be one who would have to eliminate dairy as well. I eat a lot of dairy. My mother has an appointment next week and I asked her to get the antibody panel for Celiac. She agreed. I'm in the middle of our "cheat weekend" right now so I'm eating a lot of gluten. I have to go back to low carb for my weight issues but I will probably still be eating some gluten and a lot of dairy. Maybe I could start eating the gluten bars before I go to sleep.

My symptoms are so severe I will be dumbfounded if they find nothing unusual in the CBC/electrolyte panel. I already know if my periods get any worse I'm likely going to end up in the ER. I almost passed out, several times. I literally felt like I was bleeding to death. My problems could be caused by the copper IUD but it makes sense that having Celiac could have had an impact on a copper/zinc imbalance. It would also explain the parasthesia I was getting before the IUD, not to mention my entire life.

When I was pregnant I kept telling the doctors I was having persistent pain under my ribs (left side). One doc said, "There's nothing there. That's just your intestines." So, I thought "doh, gas". After pregnancy I continued having the pain but it was on the right side (mostly). That's why they did a full abdominal ultrasound (normal). Now it's just extreme bloating and intermittent cramping, particularly in the upper abdominal area. It almost feels like I'm pregnant again.

My brain fog is also extremely disturbing although it's slightly better when it's not that time of the month. I have it ALL the time in differing degrees of severity. It makes me want to crawl in the bed and close my eyes just to try to escape it.

I'm constantly dehydrated. No amount of water helps. It just goes in and comes right back out. Before I thought of Celiac I assumed I might have an electrolyte imbalance so I also asked for a blood test for that. My hair falling out is freaking me out too. My scalp is dry/scaly and sometimes I have a weird burning/painful sensation. I have muscle tension in my neck/shoulders that also burns. It's the strangest thing.

My mother truly believes something is wrong with me. She told me to listen to my instincts and don't let the docs ignore me. She used to tell me to get over it (lol)! I really hope she tries out the diet after her test. She supposedly has remitting/relapsing MS but I swear she seems worse every time I talk to her. I'm so afraid it's some kind of dementia that's getting worse. It will be so hard for her to do the diet because she is over the top crazy about bread. She once told me if that was all she could eat she'd be perfectly happy. =(

I've been reading through threads here and everything seems to fit me so well. I ran across a post with a picture of a baby who had "allergy cheeks" and it looked just like my son. He often has those red/splotchy cheeks, particularly after eating. His breakfast, snacks and some of his "convenience" meals contain gluten. My end game plan before I ever heard of Celiac was to convert to a Paleo type diet for the whole family so I will only have to struggle with the dairy part. My son is too little to care and my husband has been doing low carb with me. I'm fairly certain if I had never started a low carb diet I would never have noticed the relationship between food and how I feel.

It will probably be a while before I see the GI doc and neurologist, maybe a month. I will be checking in here though. =D

I have very similar symptoms to you. Dr's have given up on me claiming I too am a hypochondriac and prescribing me anti-depressants. I have just attempted the gluten free diet - 3 weeks now and it's helping. whatever it is - it's helping. Good luck and keep smiling... ...if you can.