I Am Sick, Been In The Hospital A Bunch, Not Sure What To Do Anymore

[asickdaddy]

I don't even really know where to start.

As a kid, I was constantly having upset stomachs and would be nauseous often and it was mainly at school. I was constantly being told that I had ADD or that I was a troubled kid or class clown. I was smart and did well, but was so overwhelmed and stressed because I felt daily like I had a stomach virus. I was held against my will and not allowed to visit the nurse as it was perceived that I was trying to skip class. It seemed that stress would magnify the symptoms. I was tested for ADD and did not fit the profile but they gave me ritalin anyway. It didn't work.

As I got older it seemed to get occasionally more severe and I would have constant horrible pain right in the area of the appendix. Tested multiple times and nothing.

I was generally much better during the summer as I was more free and less stress but still had problems.

I would often wake up sweating, no nightmare just feeling really queesy and dry heaving. It was so intense and I had no explanation it was terrible. This symptom lasted until my twenties.

Naturally in college I tried to drink beer, but would get really ill and just felt overly drunk from just small amounts like 2 beers.

I would have periods of remission and some very successful moments but overall I would fall back into just feeling sick.

By my mid twenties it was back in full force and consuming me. I was really get anxious and almost panic at times from it. I could barely work. The doctors of course did no testing and just stated that it was anxiety. They told me I would get a stomach ulcer if I didn't get a hold of my anxiety. So I was prescribed anti anxiety and antidepressents. My body was always rejecting and it was making me sicker. Finally I got hooked on paxil and xanax. Small doses but I was in full zombie mode sleeping 15 hours a day and just lethargic. I am not really sure if I got better or just didn't care but eventually I was gaining weight and just too lazy.

I wanted to lose 30 lbs, I was never overweight but I went from my highschool weight of 135 to 172. I decided on the atikins diet. After the first week or so, which was horrible I was shaking and going into ketosis and maybe withdrawal from gluten, after those first weeks I felt real again. Clear again and I remember walking around feeling great. I lost the weight, got off the paxil and xanax and felt good. Then it gradually all crept back in.

I started drinking beer, not big amounts but a couple a day to try to self medicate. I was getting sicker and sicker. I was put on some other antidepressents and all of them were making me sick. I never truly fit the mold of depressed or anxiety I always tested outside of it but still the doctors prescribed. I was just not feeling well, my symptoms were less stomach at this point and were mostly just not feeling well and achey and flu like symptoms. I also was very asthmatic and fast heart rates. I decided on my own to do gluten free and dairy free as it seemed to sort of fit. I did this for 6 months and it was torture. I felt withdrawal, it was intense. I was feeling all kinds of burning and itching, headaches, I felt like I was starving, could never get full. I was going to the bathroom in all weird ways, and it was discolored, mucous, diarrhea, strange looking. I started to feel better after about 6 months and was noticing and improvement. I visited the doctor who suggested I eat gluten again for a week and then test my blood levels. I started eating again and all the symptoms I felt when quitting were returning. I would feel foggy in the mind, achy, anxiety, I would get these zits on my shoulders, my face looked puffy, and would have sores on it. Anyway, I tested and it came back negative. I was devastated. I completely fit the profile I thought, and I was starting to get better and now I was left with nothing. So I went back to eating gluten and dairy.

Finally at the age of 33 I started breaking down. My stomach was now burning, pain into my back. I was waking up with achy joints and felt arthritic, my wrist(which I broke at 17) just aches horribly. I was getting more asthmatic type symptoms it was hard to walk up steps. My heart would race for no apparent reason. I noticed these red spots on my arms and legs became more pronounced( I always had them but now they look extreme) I think it is called Keratosis Pilaris. I started getting horrible headaches, sensitivity to light. One day the pain was so bad in my abdomen I thought I was dying and was rushed to the hospital. They checked my heart and did ekg's and bloodwork and sent me home, apparently healthy. This repeated itself over the next two weeks. Eventually I was bleeding when I would go to the bathroom. So they admitted me and did all sorts of blood work, they did a partial colonoscopy, an endoscopy, ultrasounds, chest xrays, stress test, etc. I was monitored and not allowed to eat.

The diagnosis, IBS. I was sent home with levsin which did nothing. And a prescription of percocets, which sort of worked when I was in pain. But only 6 pills so they were not a solution just a bandaid for the first week home.

I am apparently super healthy, my tests all look great. But of course they never tested again for celiac or when they did the endoscopy they took zero biopsies. It cost me $13k to be told I have IBS and no treatment.

I am back, uncomfortable in extreme pain some days, with this gnawing burning pain. I am constantly constipated and I get some relief with magnesium citrate but then I throw off my potassium and other nutrients. My doctor has kind of given up on me. Our last visit he said he had no idea and that he has patients with severe stomach ulcers and anemic with no symptoms, and yet I have a clean bill of health but I am in extreme agony.

It is labeled as stress or IBS. I agree stress makes it worse, but I am stressed by it all. Relieve the problems, cure me, solve my dillemma, diagnose me and the stress will lessen. I am afraid, I am stressed, and most of it is because I don't know what is wrong.

I have some really good days, some tolerable days and some really awful days that can sometimes stretch into weeks. My wife and kids view me as a sick daddy. It sucks it really does. My job is lost, I could not keep up. I am now self employed and barely keeping it all together. I am 34 and supposedly healthy. I tried a few weeks back to remove the gluten and dairy again to just test it myself and I lasted 1 week, I seem to get so much sicker. Everything becomes worse and after a week, I just give in. I no longer have healthcare, I was not able to get coverage because of this mess. My life insurance is $50 more a month because of all the hospital stuff. But I am a healthy guy. Oh yeah, I was diagnosed with one thing through all this mess. I have thallasemia beta minor, no treatment required and no symptoms the doctors say. Essentially my hemoglobin carries less oxygen and I am sort of anemic, but cannot take iron supplements and should feel nothing from the thallasemia. I have no clue if I trust that.

Just need some advice, sorry for the length there is just no way to discuss this simply. I apologize.

[mushroom]

Hi, and welcome. I think the very fact that you are here means that you have deduced the answer to your problems. Celiac is the one disease that no doctor seems to think of or be able to diagnose Only the patients seem to be able to add it all up, two plus three makes five, and that's celiac disease. I hope we can provide some help for you.

Yes, when they did the last endoscopy they should have thought of celiac disease because it is the one thing that creates all these symptoms with few other outward signs that anything is wrong. The gut problems - oh that is just IBS. The depression - well you are stressed. Damned right you are stressed, you are being tortured and everyone says you are healthy as a horse. How stressful can that be?

Arthritic joints, sores, fast heart rate, ADD, nutrient deficiency, weird stool, upset stomach, nausea - well, it's obvious you are making all this up because you are healthy!! NOT!!

Why did you feel worse upon going gluten free? Your body was going through withdrawal from the gluten, which can act like an opioid on the body and takes about as long to get rid of as nicotine withdrawal. You just have to push through it to the other side.

One week back on gluten for testing after being gluten free - not nearly long enough. It takes a good two to three months of the equivalent of 3-4 slices of bread a day to make a sufficient level of antibodies in the blood and to create enough damage in the small intestine for a biopsy to show damage. Alas.... most doctors do not know this

Trust me, you do not have IBS, because IBS is not a diagnosis, it is just a description of a set of symptoms when doctors can't figure out what it is. I have taken to calling it Irritable Bull Sh*t!! If you do not have celiac disease (and it is possible) you at least are severely gluten intolerant and should quit eating gluten. That is my unmedical diagnosis. And I say it is possible that you do not have celiac disease because researchers are finally discovering that gluten creates other malevolent conditions in the body that are not celiac, although the symptoms may be startlingly similar and the effects on the body just as bad.

Now you are left with a dilemma. Do you need a medical diagnosis? That is entirely up to you and one which will require some soul-searching. You do not need a doctor's prescription or permission to go gluten free. That is the good news. However, some people require the medical validation of a diagnosis, and some families will not take the gluten-free restrictions seriously unless a doctor says so. So you have to look within yourself and assess your family's attitudes to see whether you can live self-diagnosed, as I am, or whether you need a doctor to tell you. If you no longer have health insurance you may not want to incur the expense that would come with a diagnosis either. But this you must decide for yourself.

Meanwhile, I welcome you to the gluten-free world. You can feel so much better in a shorter time than you can believe. No, you can believe because you did it once before on Atkins.

Good luck on your decision making.

[GFinDC]

Yeah, your doc screwed up. One week is too short a time for the antibodies to build-up and damage your gut enough to be detected. The antibodies are mostly inside your gut, not running around randomly in your blood. The blood tests for celiac are not 100% bullet-proof accurate to begin with, they have a certain percentage of false negatives.

You can take a clue from your reaction to going gluten-free. Your body acts different without gluten in it. There is a reason for that. Call it NCGI (non-celiac gluten sensistivty), recently shown to affect 6% of the population, or celiac disease or body that hates gluten. Whatever you call it, your body doesn't like gluten. So listen to it and get off the stuff before it kills you.

Withdrawal effects from gluten and an adjustment period to being gluten-free are not unusual. Your gut is not a sterile environment, there are billions of little critters (bacteria) running around in there living off the food you ingest. They are not all the same either, but are various strains that do better with or worse with different foods to digest. Many of them help to break down food into absorbable particles. Some just get fat and happy and make lots of gas or other nasty stuff and make you sick. When your diet changes you change the bacteria balance as some gluten loving bacteria are no longer thriving and other bacteria start to take over. That balance change can take some time to work through. It can help to take some pro-biotics and also avoid sugar for the first month. Another thing to avoid is dairy, as it is has a sugar called lactose that is digested by an enzyme called lactase. The lactase enzyme is made by the villi in the small intestine, which are destroyed by celiac.

I also suggest you avoid all soy to start with, it is nasty stuff.

Celiac is an autoimmune condition and it takes a while for the antibodies to stop being cranked out full speed by your body. So it could be months before the damage stops happening completely. But anytime you ingest gluten you kick the antibody factory up into full gear again and boom! You need to get off it and stay off it for the antibody reaction to stop. It all gets easier in time, as you learn to eat gluten-free though.

[asickdaddy]

Thank you so much Mushroom and GFinDC

I actually really did get a hang of the gluten and dairy free diet. The only problem was I was never satisfied and I constantly felt like my blood sugar was off. My solution was gluten free beer, redbridge. 2 a day. I know I know. Not the best solution but I was just on my own with no assistance.

I don't necessarily need a doctors ok for me to get back on the diet or even confirmation but I decided that I wanted to do a better blood test.

So I am reaching the end of my back on gluten phase its been about 2 months so I plan on getting a blood test and then getting back on a gluten-free and dairy free diet. I never had a problem with cheese but was not breastfed and never could drink milk, but I love cheese. However I imagine if milk on its own makes me sick then cheese also should be avoided.

I think I fit the profile, however I do think doctors are clueless. In fact my doctor even told me that he thinks in 10 years we will all hear and learn quite a bit more about celiac but at the moment, he said its all a guessing game. So he is not really a bad guy, but its not very helpful either.

I can't stand the withdrawal, I have gone glutenfree twice now and its terrible. The withdrawal is absolutely intense. It magnifies everything that I am feeling and makes it worse x10 and it lasts for weeks. This is probably why I just dont do it, as it seems to be so difficult. I also think it was worse the second time and probably going to be worse the third time.

Lastly, I met a chiropractor recently, just met him at a family event. And he suggested to me that I need to get my wisdom teeth removed as wisdom teeth when aggravated can cause an immune reaction and your body can develop celiac or other similar type reactions. It is true I have had horrible wisdom teeth problems, but have avoided the extraction. His claim was that your body becomes super sensitive and is then susceptible to an immune reaction like celiac. I don't know how much I buy into that, but .. an interesting perspective

Also over the last few months I have taken to benadryl as I seem to need an antihistamine, my body feels like it is having a reaction so I take 1 benadryl a day and that seems to ease the symptoms. Maybe a placebo.

I realized today that if I don't take magnesium I am constipated and have no desire to go to the bathroom. I will get impactions and eventually be in severe agony, but other than that I can't on my own go the bathroom. This has been this way most of my life and I see my son who is 3 going through a similar pattern. The magnesium is only recent. One thing that did normalize on a dairy free/gluten free diet was I never was constipated and was regular.

Do you guys think that since I get such intense withdrawal and that I do have some resolution of symptoms and better bowels on the diet that this is a sign? Seems like it to me. Just want some perspective. Thanks again friends.

Also I am on a restricted account still so sorry if I am slow to respond.

[asickdaddy]

I also suggest you avoid all soy to start with, it is nasty stuff.

I have never eaten soy unless it is in some ingredient or part of the mix of some kind. I have thought about tofu or soy milk but just have no desire. I agree from my reading it sounds bad. I did have an ok experience with almond milk.

[mushroom]

Milk has two major components - lactose (the milk sugar) and casein (the milk protein). They are digested by different enzymes. It is possible to be intolerant of one and not the other. Or intolerant to both. You can always give cheese a try on its own and see how you respond, but most gluten intolerants are unable to handle lactose (milk, cream, ice cream at least) until the gut heals. I personally have always been able to eat yogurt and cheese, but ice cream would lay me flat

Yeah, the withdrawal is tougher on some than others. I went through the absolute worst nicotine withdrawal, but gluten was relatively easy for me. Lots of posters here report receiving relief from Benadryl and I see no harm in it if it sees you through.

Yes, having unhealthy wisdom teeth can have a major negative effect on your health. I agree you should have them yanked if they are infected/bothering you.

I have been majorly magnesium deficient, too, and if I don't take it every day I end up with cramps in my calves at night.

And lastly, don't worry about being slow to respond - today it just means that I have not been on to approve your posts

[GFinDC]

Open Original Shared Link

Yep Shroomie gots it right, casein protein may not be a problem for you, so cheese may be fine. Most of the lactose sugar in hard cheese is digested/eaten up by the bacteria that make it cheese. Softer cheeses can have lactose in them and sometimes they add lactose to help soften them more, so cheese like food products i.e. Velveeta/cheese balls would be a bad idea. If you start checking ingredient labels you will see casein and or lactose added to many processed foods. Along with a lot of other things like hydrolized vegetable protein, (possibly soy), natural flavors, (who knows what that is, dirt?), preservatives, (so the Twinkies will outlive the cockroaches), food colorings (so people will actually want to eat something that they otherwise would throw in the trash or stomp on or burn), mind control drugs (so we will all like this stuff and pay our taxes with a smile), and chemicals that make us crave certain foods so we will be repeat buyers/eaters (gluten, sugar, caffeine). Some of these things I say just for fun but if the mind police or aliens ever catch me and brain wash me I will stop, promise!

I sound like I never eat processed foods but that is not it. I do try very hard to stick with things that have a minimum number of ingredients, and no preservatives or colorings. I figure the less chemical waste I put in my body the easier I make it's job of protecting me. Now outside the body I like lots of color and make paintings using my home made paints and pigments. But inside I think the God given colors are just fine as is!

Ok, got off on quite a tangent there and don't need to burden you with my foibles. The thing to remember is to try and eat a diet consisting mostly of whole foods that you cook yourself at home. That way you know what you are eating because you made it. It takes the mystery out of things and lets you identify foods that may be upsetting your digestion. You will learn what is safe for you to eat by controlling what you eat. Of course the fewer foods you eat the easier it is to figure which is a problem. Smaller numbers equals fewer culprits. Eventually you may find an elimination diet helpful. Lots of us have additional food intolerances beyond gluten. Sometimes they don't become obvious until after we are off gluten for a while.

I hope you do go back to the gluten-free diet and it helps you feel better. Being some what short on vitamins and minerals due to malabsorption is reason enough to feel bad by itself. If you read a little on berri-berri and rickets etc you will see why. I think some of us have craving because we are short on nutrients. Our body wants what it wants and doesn't know how to talk except to say hungry very loudly. Some people say we crave what it bad for us too. That seems to make sense, could be. Like women, can't live with 'em..

[Dee777]

Asickdaddy;

I am so very sorry it sounds like you have just had the worst luck with your doctor. I am new here too, and although my doc was great with my diagnosis and making certain I get to see the appropriate people I am still having a terrible time adjusting to this whole Celiac thing. What I wanted to tell you is that you have come to the right place. The people I have encountered here are the absolute best when it comes to advice, and comfort too when required! The best to you Asickdaddy. We have a long road ahead of us but here there are people who understand us

[asickdaddy]

Asickdaddy;

I am so very sorry it sounds like you have just had the worst luck with your doctor. I am new here too, and although my doc was great with my diagnosis and making certain I get to see the appropriate people I am still having a terrible time adjusting to this whole Celiac thing. What I wanted to tell you is that you have come to the right place. The people I have encountered here are the absolute best when it comes to advice, and comfort too when required! The best to you Asickdaddy. We have a long road ahead of us but here there are people who understand us

Thank you Dee. I am getting blood tested this week and fortunately had a few average days where I could manage. Still eating gluten although getting at times instant reactions. But thank you for your support.

[rosetapper23]

Two things to add to this discussion:

1. You might consider taking L-Glutamine to heal your gut. Many of us use this supplement when we need to heal.

2. Since you're having trouble getting insurance, if you get a celiac diagnosis, you might NEVER get insurance again. Perhaps it would be best in your case to forgo an official diagnosis.

Okay, there's a third thing--you mentioned that your young son seems to be having a similar health pattern. Have you considered having him go gluten free with you? Since this is a genetic disease and young brains can be affected by gluten (reduced blow flow to the frontal lobes and plaques can form throughout the brain), it would be great if your son's gluten problems could be resolved as early as possible. Many people don't know that celiac/gluten can cause many neurological problems to develop (ADHD, depression, anxiety, migraines, epilepsy, bipolar, and even schizophrenia).

Your case sounds extreme--I hope you begin experiencing fewer health problems soon! If I get glutened, one of the symptoms I hate the most is how my joints and wrists ache. It feels like tendonitis throughout my whole body. You sound like such a "classic" case of celiac....please do try to follow the diet. You deserve to live a healthful life.

[domesticactivist]

You might have better luck with a diet that is even more basic than gluten-free. Our family did not have symptoms as severe as yours but we realized gluten-free didn't fix everything. We are doing the GAPS diet which is based on the specific carbohydrate diet and aimed at restoring gut health and flora balance. You start with bone broths, add veggies (cooked) and meats (organic, grass fed), and home fermented foods. We also take fermented cod liver oil and concentrace mineral drops ( have mg, which makes an obvious difference for us, too) eventually you add fruit. To be full we make sure to eat enough saturated fat from coconut, avocado, nuts, ghee, meat, etc

I had lots of withdrawal symptoms and realized a lot of it was due to sugar withdrawal and some was reactions to gluten free stuff. The gaps diet cut all grains and processed foods and we've been better off.