Am I On The Right Track?

[jakeynogluten]

Background: I have been in good health most of my life and my digestive/neurological issues didn't start until recently...I'm 25. I have an honours degree in physiology and immunology and I'm currently in dental school (I have some backround in medicine is what i'm getting at). The earliest symptom of my health problem that I can remember started in highschool which was lack of appetite in the morning and gagging when I brushed my teeth. I had a regular appetite throughout the day. This carried on throughout highschool and into university. I've always been able to eat whatever I want and never gain weight, even up to 5000 calories/day (doctor said I had a fast metabolism..I'll say!) During university I had progressive appetite loss and no accompanying symptoms, I would eat what I could to get by (usually pizza or sandwiches). I would get sick often enough (pharyngitis, strep throat, flu, colds, persistent cough) especially when I was stressed during exams. My real problems didn't start until I experienced profound appetite loss.

More recently: In the past year I have experienced an almost complete lack of appetite. I was eating very little food and forcing myself to eat what I could. When I did eat I was getting full without eating very much (early satiety). I went to the doctor and he ordered regular blood tests which came back normal. I started taking protein shakes and meal supplements because I knew I wasn't eating enough...still no weight gain. This went on for a while and my stool was consistently loose. Eventually I had no appetite at all and I was eating little to nothing each day, an apple in the morning w/ toast, a sandwich later in the day and maybe a salad or something small for supper. Sometimes I would have to be starving before I could have enough of an appetite to eat anything. I was losing weight and starting to experience new symptoms, I had joint and back pain. I started having heart palpitations and pain in my chest (heart function tests came back normal). I felt like there was something blocking food from going into my stomach (thought I had a hiatal hernia), I had shortness of breath, I had gas and felt bloated, diarrhea most of the time. I started waking up with a sore throat and experiencing heart burn. Went to the doctor and convinced him to give me a prescription for antacids (he thought I was fine...arrrg), took the antacids for 3 months, they helped a lot at first and then stopped helping and I started getting worse. I started getting depressed, had no energy, difficulty sleeping and would wake up tired. I went and saw a different doctor and told him I thought I might have helicobacter pylori (by this point i had been doing tons of research and my symptoms fit). He prescribed me the Prev Pac antibiotic treatment and I noticed an improvement in symptoms by the time the treament was finished. The acid reflux went down and other things started getting better, I had more of an appetite but then I started feeling worse again. At this point I was experiencing depression, irritability, loss of appetite, chronic fatigue, shortness of breath (this really bothered me), weight loss, loose fatty stools, bloating, red itchy eyes, post nasal drip, easy bruising and lack of energy. I started thinking that I was dying and worried about it constantly...I still worry sometimes. I thought it might be stomach cancer, crohn's or colitis, I didn't know what was wrong with me. Then I started reading about celiac disease and I was desperate to try something new and figured what do I have to lose?

I cut gluten out of my diet completely and cut way back on dairy and soy. I started feeling better immediately, after 2 days I felt better than I had in 6 months. I felt great the first week gluten free and then I went on a bit of a rollercoaster ride. I was feeling progressively better but I had bad migraines, was tired but couldn't fall asleep, I would have ups and downs each day and from day to day. I had times when I had no energy at all and sometimes I couldn't pinpoint what was wrong with me...I just felt ill. It's now been 3 weeks gluten/dairy and soy free and I'm feeling better each day. I started taking vitamin supplements based on what i've read here and other sources (I don't know what I would do without this forum) B6, B12(sublingual), C & D, Mg, Zn, probiotics and I'm thinking of starting a liquid Iron supplement at 5-8mg/day (hoping it will help with energy)...what do you think?

Right now: Most of my symptoms have improved, I have an increase in appetite, more energy (still not where I want it to be), better bowel movements but still loose sometimes and some undigested food matter, no heartburn, less shortness of breath. I haven't gained much weight but I'm not losing weight anymore and I feel much healthier and more alert. I know I should have had a blood test and a biopsy and that being gluten free now will make those tests come back negative even if I have celiac but I don't care much for the medical help I've received. I just want to know what some of the self-taught experts on this site have to say...am I on the right track? How long did it take before you were no longer feeling tired and nauseous, before your stool was completely normal? Do you ever feel hopeless one minute and then like you're getting better the next?

Finally I would like to thank all the people who post on this site and share their experiences with others who have no other place to turn, I don't know if I have celiac disease but I do know that being gluten free is the only thing that has helped me alleviate the brutal symptoms I've been experiencing. Please respond and let me know if you know where I'm coming from.

Much love,

Jakey-no-gluten

[mushroom]

Jakey, I know exactly where you're coming from, and might I add I think you've come a hellluva long way

This is not an easy journey without the normal signposts in life to tell you in which direction to go. It involves a lot of trial and error, hopefully more of the former and less of the latter. It involves wrong turns, backtracking, doubting yourself, trusting what your body is telling you, disbelieving that the medical professionals are gods and know more than you do about your own body.

Some of us here on the forum are lucky enough to have a straightforward journey, with the usual symptoms, doctor, diagnosis, treatment, recovery pathway. Probably more of us flounder around for years before we (or others for us) finally see the light shining in the black night, and follow the star toward the path of rejection of gluten and recovery of our health and our lives.

It is so unfortunate that so few physicians can diagnose celiac disease, but they were not taught it in medical school, and their continuing medical education is financed by the pharmaceutical companies. Naturally enough, since there is no pill for celiac disease, they don't learn anything about it there either. Since the pharma companies sponsor a good deal of the medical research, there is not a lot of emphasis placed on celiac disease and so we are left to fend for ourselves (and, I might add, often criticized when we do).

I am self-diagnosed, in my sixties! after a lifetime of GI problems which included many, many of your symptoms. The inability to eat because your were already full (of gas!), heart palpitations, difficulty sleeping, tiredness, bloating, easy bruising, lethargy. All along I was treated patronizingly -- you have IBS, you have fibromyalgia, you need to see a psychiatrist (it IS worse for women, believe it or not, because we are all believed to be airhead headcases ),

I am so thrilled for you that you are feeling better after three weeks. The choice of whether or not to pursue a formal diagnosis is an entirely personal one. For me, the thought of eating gluten for that long (there are varying estimates of how long is necessary, but my personal belief based on results I have read about is two months) is absolutely intolerable - I would not make it. And that is another thing to take into account: for most of us, the longer we are gluten free the more pronounced our reactions to gluten become. Whereas before we could eat several slices of pizza and our poor overwhelmed bodies would utter a feeble protest, now a single crumb sends the antibodies screaming through our bodies slashing and burning They know now they have the upper hand!

I think you are on the right track. Use the medical professionals for the things you need them for - to test your nutrient levels, to order a DEXA scan to make sure you don't have osteoporosis, to check your thyroid function (probably more important in women, I'm not sure). Tell them what you have and what you need and make them do your bidding so you can take control of your own health, since they have refused to do it for you. Make sure your ferritin is tested also - anemia is a biggie for celiacs.

And no, this is not a short journey. You will accidentally ingest gluten, you will have ups and downs in your recovery (which could take up to six months or even two years, depending on the degree of damage and the number of other food intolerances, which have a nasty habit of making their presence known once the gluten is withdrawn). These are the food molecules which have found their way through the leaky wall of your small intestine which the gluten has created, and which your body treats as foreign invaders. Some have none, some a few, some (like me) lots! The one thing that most people who have damage to the villi in their small intestine cannot digest at first is lactose, and you are best to avoid milk, cream, ice cream, frozen yogurt completely at first. You can try yogurt, hard cheese, dairy products that have been cultured, but you may have to give those up until you have healed for at least six months. If you are finding other foods bothering you, keep a diary and symptom log, and cut out those foods at first too -- you may well be able to add them back in later.

I know this is a long epistle, but I just want to congratulate you for figuring it all out and for starting the journey back to health. We are all here to answer any questions you have along the way and to provide support. Good luck on your gluten free journey!

[jakeynogluten]

Jakey, I know exactly where you're coming from, and might I add I think you've come a hellluva long way

I know this is a long epistle, but I just want to congratulate you for figuring it all out and for starting the journey back to health. We are all here to answer any questions you have along the way and to provide support. Good luck on your gluten free journey!

Mushroom- Thanks so much for your response, it means a lot to me. Sometimes you just feel alone going through these things and it's nice to hear from somebody else who has experienced the similar things. I've learned from reading other posts on this forum that my journey hasn't been as difficult as many others, yourself included, and I remind myself of that when I'm feeling self-pity. I wish you the best in your pursuit of a healthy life and thanks again. Jakey

[GFinDC]

Er, what Mushroom said, but ditto.

I think you are on the right track. You could try for an endoscopy but it is not too reliable after being gluten free for a while. Or Enterolab testing might be another thing to consider. All in all though, if you are getting better without gluten in your gut, then it probably isn't going to help much to have a diagnosis anyway.

I do think avoiding soy, dairy, and sugar are good ideas for the start of the diet. And also avoiding most processed foods. Other food intolerances are probably the norm rather than the exception for us. Nightshades, (tomatoes, potatoes, peppers) are one that you want to test for at some point. Actually, do a search on "top 10 food allergens" and you will have a list of common foods that might be problems. There are lots more though. Any food can cause a reaction in someone, and the trick is finding out which ones affect you. Eating out is risky, and eating anything someone else prepared who doesn't understand celiac is risky too.

As you go along your intestinal villi should start healing and you may start gaining weight. Also absorbing vitamins and minerals better. All good stuff. Try some pro-biotics once in a while also, as long as they are gluten/dairy/soy free (GFSFCF). Recovery can take a while, and your body does need to adjust to the new diet. That may involve some ups and downs along the way.

Check out recipe forum here for ideas, and do searches for foods that you aren't sure about. Really a whole foods diet is the best way to start IMHO, and avoids a lot of possible preservative, food coloring, and cc issues.

Remember everything counts, beer, soda, coffee, tea, medicines, vitamins, everything needs to be gluten-free, especially you!

[ravenwoodglass]

I agree that it sounds like you are in the right place. There can be ups and downs at first as we heal. You've gotten some great advice in the previous posts. I hope you continue to improve and welcome to the board.

[Chakra2]

Jakey -- just wanted to say best wishes. Your symptoms sound upsetting and I do hope this path leads you towards health. I am 33 and had decades of GI symptoms including gut pain, irritability and depression, fatigue and joint pain. I went on an elimination diet looking for food allergies in myself and my toddler after his pediatrician told me eczema, diarrhea and sleeplessness weren't related to food. At that point I felt fed up with docs too and the frustration at having my intuition dismissed fueled my confidence in my ability to figure this out for myself. 7 months in I still get riled up thinking about it!!! And about the 2 pointless surgeries I had and decades of dealing with these issues when doctors could have at least MENTIONED that food causes these symptoms for some people. So without meaning to (I had barely even heard about celiac) I discovered the wonders of gluten-free living and (most days!) haven't looked back.

I have struggled with the whole question of pursuing a diagnosis, though, just to be honest. I feel stuck -- I do not want to eat even 3 meals of gluten much less 3 weeks -- but it just feels hard sometimes wondering if this is all in my head. I know it's not but I find that the farther I get from a glutening the more I start thinking, "This can't really be true. There is no way that a perfectly healthy food particle can cause me a week of distress." Being diagnosed would help my incredulity, I think, and help with explaining to family and friends. I am thinking about getting a biopsy for that reason. My GI doc (who I finally consulted about a month ago) said that a skilled pathologist can sometimes identify intestinal damage even this far out.

Anyway, back to you! I guess what I most want to pass on is that I believe in you! You can figure this out and then as a medical professional be such a blessing and a resource for others. I just went to my dentist for the first time since going gluten free and had some questions about my mouth (mouth sores are a gluten symptom of mine) and about Sjogren's and he seemed pretty clueless. Kind of bummed me out because I really wanted some advice. I would drive a long way to see a dentist who I knew specialized in celiac patients.

One note about joint pain -- I had mild-moderate pain since I was 13 or 14 and it's definitely related to gluten for me. But I was surprised that after a few months gluten free, my joint pain suddenly became way more severe. That's actually what eventually drove me in to see a doctor. I was sure I had RA. Turned out it was nightshades. I had started eating a lot more potatoes to replace grains and once I dropped all nightshades (and my few other food intolerance foods) my joint pain vanished. That has been my favorite resolution in all of this! So I hope that being gluten free helps with your pain but you might want to experiment with eliminating other foods too if it doesn't completely resolve.

Good luck!

Chakra2

[jakeynogluten]

Anyway, back to you! I guess what I most want to pass on is that I believe in you! You can figure this out and then as a medical professional be such a blessing and a resource for others. I just went to my dentist for the first time since going gluten free and had some questions about my mouth (mouth sores are a gluten symptom of mine) and about Sjogren's and he seemed pretty clueless. Kind of bummed me out because I really wanted some advice. I would drive a long way to see a dentist who I knew specialized in celiac patients.

One note about joint pain -- I had mild-moderate pain since I was 13 or 14 and it's definitely related to gluten for me. But I was surprised that after a few months gluten free, my joint pain suddenly became way more severe. That's actually what eventually drove me in to see a doctor. I was sure I had RA. Turned out it was nightshades. I had started eating a lot more potatoes to replace grains and once I dropped all nightshades (and my few other food intolerance foods) my joint pain vanished. That has been my favorite resolution in all of this! So I hope that being gluten free helps with your pain but you might want to experiment with eliminating other foods too if it doesn't completely resolve.

Good luck!

Chakra2

Thanks for the support! I have been feeling so much better these days and I started taking a liquid iron supplement, hoping it will boost energy. I've eliminated the nightshades already, along with dairy and soy. I don't think you need an MD to tell you that you have celiac disease, gluten free is good for you and good for me!

[MarkR555]

Hi Jakey, I am 25 next sunday and have been gluten free for 2 weeks too and have some of the same symptoms. Mostly painful heartburn and a hiatial hernia but also some joint pain (painful inflammed sacroilliac joint after anything more than light impacts.) I am maybe begining to realise I put up with feeling like crap and dealing with a lot of pain and discomfort daily more than most people probably do, I thought maybe it was normal - it's hard to know how other people feel all the time.

My GI doc did a biopsy looking for the cause of my heartburn problem and found I had villous atrophy, he took some blood and two weeks later (last friday) and confirmed the diagnosis of celiac diease. I was happy since it means I can now try to get better, not knowing what is wrong really sucks. Luckily I don't eat much bread and pasta anyway so adjusting to the diet hasn't been too hard although eating out and traveling away from home at all is a real pain.

I will be interested to see how you get on since we are the same age and have similar symptoms and went gluten free at almost the same time. Let me know how you get on, i'm really hoping my GI symptoms clear up since they are causing me a lot of pain and affecting my sleep.

Best of luck, Mark

[aderifield]

I feel stuck -- I do not want to eat even 3 meals of gluten much less 3 weeks -- but it just feels hard sometimes wondering if this is all in my head.

I know exactly how you feel. The only thing that helps me dismiss that feeling is plugging each new symptom and the word Celiac into Google and having articles immediately pop up affirming that others have experienced what I am experiencing. Otherwise, I'd think I'm completely nuts. So many new things happening and I've tried not to overexpose myself to the literature bc I don't want to run the risk of psychologically creating or, adding to my symptoms based upon what I have read.

Good luck to you. Know there are a lot of us going through the same thing out here.

[jakeynogluten]

Hi Jakey, I am 25 next sunday and have been gluten free for 2 weeks too and have some of the same symptoms. Mostly painful heartburn and a hiatial hernia but also some joint pain (painful inflammed sacroilliac joint after anything more than light impacts.) I am maybe begining to realise I put up with feeling like crap and dealing with a lot of pain and discomfort daily more than most people probably do, I thought maybe it was normal - it's hard to know how other people feel all the time.

My GI doc did a biopsy looking for the cause of my heartburn problem and found I had villous atrophy, he took some blood and two weeks later (last friday) and confirmed the diagnosis of celiac diease. I was happy since it means I can now try to get better, not knowing what is wrong really sucks. Luckily I don't eat much bread and pasta anyway so adjusting to the diet hasn't been too hard although eating out and traveling away from home at all is a real pain.

I will be interested to see how you get on since we are the same age and have similar symptoms and went gluten free at almost the same time. Let me know how you get on, i'm really hoping my GI symptoms clear up since they are causing me a lot of pain and affecting my sleep.

Best of luck, Mark

Mark,

Thanks for your reply! I have been gluten free for 1 month now and feeling so much better. My only complaints these days are some bloating and shortness of breath (which is probably caused by the bloating). My diarrhea has passed and I'm back on track with my stool quality. I just had had my orientation week for dental school which was 4 days long and each day being 12-15 hours of activities and travelling. I would have never been able to do it 2 weeks ago...so I have the wonderful people on this forum to thank for getting me healthy fast. I wish you the best of luck and encourage you to post alll of the symptoms you have been experiencing. I'd like to follow your progress also. Best of luck,

Jakey

[T.H.]

Wishing you good luck. Very much know where you're coming from. It's sometimes so hard to trust yourself and what you are feeling when all the experts won't listen or the tests don't seem to bear out what you're experiencing.

The more I find out out and experience, however, the more I'm learning that we have to trust ourselves and what we're feeling and just take a deep breath sometimes. :-) In re: to the feeling better but having some issues? Have you tried keeping a food journal? That was the only way we tracked down some of the foods that were bothering me when I went gluten free. They don't show up on allergy tests, but if I avoid them, I feel better. I was lucky enough to have a doctor who supported that as a way to keep track of problems, since he believes we still have a lot to learn about food and how it affects us if things are going wrong.

There could even be a few gluten-free products that might have gluten levels that are just enough for your body to have an issue with, even if most people can have them with no trouble.

But...oh such hearty congratulations on finally finding something that seems to be helping your health improve! That is honestly just wonderful.

Background: I have been in good health most of my life and my digestive/neurological issues didn't start until recently...I'm 25. I have an honours degree in physiology and immunology and I'm currently in dental school (I have some backround in medicine is what i'm getting at). The earliest symptom of my health problem that I can remember started in highschool which was lack of appetite in the morning and gagging when I brushed my teeth. I had a regular appetite throughout the day. This carried on throughout highschool and into university. I've always been able to eat whatever I want and never gain weight, even up to 5000 calories/day (doctor said I had a fast metabolism..I'll say!) During university I had progressive appetite loss and no accompanying symptoms, I would eat what I could to get by (usually pizza or sandwiches). I would get sick often enough (pharyngitis, strep throat, flu, colds, persistent cough) especially when I was stressed during exams. My real problems didn't start until I experienced profound appetite loss.

More recently: In the past year I have experienced an almost complete lack of appetite. I was eating very little food and forcing myself to eat what I could. When I did eat I was getting full without eating very much (early satiety). I went to the doctor and he ordered regular blood tests which came back normal. I started taking protein shakes and meal supplements because I knew I wasn't eating enough...still no weight gain. This went on for a while and my stool was consistently loose. Eventually I had no appetite at all and I was eating little to nothing each day, an apple in the morning w/ toast, a sandwich later in the day and maybe a salad or something small for supper. Sometimes I would have to be starving before I could have enough of an appetite to eat anything. I was losing weight and starting to experience new symptoms, I had joint and back pain. I started having heart palpitations and pain in my chest (heart function tests came back normal). I felt like there was something blocking food from going into my stomach (thought I had a hiatal hernia), I had shortness of breath, I had gas and felt bloated, diarrhea most of the time. I started waking up with a sore throat and experiencing heart burn. Went to the doctor and convinced him to give me a prescription for antacids (he thought I was fine...arrrg), took the antacids for 3 months, they helped a lot at first and then stopped helping and I started getting worse. I started getting depressed, had no energy, difficulty sleeping and would wake up tired. I went and saw a different doctor and told him I thought I might have helicobacter pylori (by this point i had been doing tons of research and my symptoms fit). He prescribed me the Prev Pac antibiotic treatment and I noticed an improvement in symptoms by the time the treament was finished. The acid reflux went down and other things started getting better, I had more of an appetite but then I started feeling worse again. At this point I was experiencing depression, irritability, loss of appetite, chronic fatigue, shortness of breath (this really bothered me), weight loss, loose fatty stools, bloating, red itchy eyes, post nasal drip, easy bruising and lack of energy. I started thinking that I was dying and worried about it constantly...I still worry sometimes. I thought it might be stomach cancer, crohn's or colitis, I didn't know what was wrong with me. Then I started reading about celiac disease and I was desperate to try something new and figured what do I have to lose?

I cut gluten out of my diet completely and cut way back on dairy and soy. I started feeling better immediately, after 2 days I felt better than I had in 6 months. I felt great the first week gluten free and then I went on a bit of a rollercoaster ride. I was feeling progressively better but I had bad migraines, was tired but couldn't fall asleep, I would have ups and downs each day and from day to day. I had times when I had no energy at all and sometimes I couldn't pinpoint what was wrong with me...I just felt ill. It's now been 3 weeks gluten/dairy and soy free and I'm feeling better each day. I started taking vitamin supplements based on what i've read here and other sources (I don't know what I would do without this forum) B6, B12(sublingual), C & D, Mg, Zn, probiotics and I'm thinking of starting a liquid Iron supplement at 5-8mg/day (hoping it will help with energy)...what do you think?

Right now: Most of my symptoms have improved, I have an increase in appetite, more energy (still not where I want it to be), better bowel movements but still loose sometimes and some undigested food matter, no heartburn, less shortness of breath. I haven't gained much weight but I'm not losing weight anymore and I feel much healthier and more alert. I know I should have had a blood test and a biopsy and that being gluten free now will make those tests come back negative even if I have celiac but I don't care much for the medical help I've received. I just want to know what some of the self-taught experts on this site have to say...am I on the right track? How long did it take before you were no longer feeling tired and nauseous, before your stool was completely normal? Do you ever feel hopeless one minute and then like you're getting better the next?

Finally I would like to thank all the people who post on this site and share their experiences with others who have no other place to turn, I don't know if I have celiac disease but I do know that being gluten free is the only thing that has helped me alleviate the brutal symptoms I've been experiencing. Please respond and let me know if you know where I'm coming from.

Much love,

Jakey-no-gluten