Looking For Advice/input. I Think I Have Celiac, But I Can't Say For Sure.

[Nic38]

Input from anyone is appreciated.

I have been sick for almost exactly a year now. I'm a 37 year old male who has always been very active. I went to the gym several times a week. I did a lot of outdoor activities. All that has totally changed. I'm not that person anymore, mentally or physically. It depresses me to think how I was before and how I am now.

As briefly as I can (laugh), I will tell you my story. In April of last year, I started having a tingling sensation in my mouth. (I had recently gotten over a virus of some kind that everyone in the office had. It involved a lot of nose blowing, coughing, and everything else associated with that. I don't think I missed any work though. I just felt bad for about a week or two.) I was not that alarmed by the feeling in my mouth. It is hard to explain how it felt, just a weird feeling on the upper right side. But, over the next few weeks it became more pronounced and spread all over. I frantically scheduled an appointment with a Periodontist, which took about 3 weeks to finally see. By that time, my mouth was hurting pretty bad-stinging and burning. The periodonist said I was fine. I even saw my dentist, and endodontist, and another periodontist who said I was fine. During this whole time, I was having heart palpitations, panic attacks, insomnia, and a few other things I'm sure I will remember later. This was not like me, even when I've been under stress. I did think it was a result from the worrying about my mouth. I had a work physical performed. They said I passed with flying colors-better than my previous ones. I was really thinking I had gum disease, but the pain was so intense and deep. I noticed my gums did bleed slightly at times. I think they have receded-they already had receded some over the years, even though I have been meticulous. I have tooth notching on some teeth on the upper left side that I first noticed in April. The last periodontist said my gums were bleeding because I was brushing too hard. I know that not to be true. The whole time, I was thinking I would overcome this. My body would heal itself. I started getting fatigued easier. I was still attempting to do the things I loved, weight lifting, outdoor activities, yard chores. I eventually had to give all of it up and only do what I HAD to do. I lost weight. Everyone at worked noticed how I changed and even asked me what was wrong. I have become withdrawn, if anything, just dealing with this has made me antisocial. I have shunned my friends and family and only deal with them when they approach me.

So, I have essentially been living day to day in misery, not sure how to figure out my problem, and coping as best I can. Any doctor I go to, says I'm fine. As I said, I have lost weight, not a lot, but noticeable to me, especially since I was a weight lifter. Between then and now, I have had some things happen. I got a rash all over my chest and arms. I thought it was scabies, but I doubt it was looking back on it. I now realize that my nose and upper lip has had a rash as well. Only lately has it become pronounced enough for me to call it that. Up until recently it was mostly flaky skin. My dad sometime last year pointed it out, and I didn't think much about it. He said he got it as well. Not much else was said about it.

Fast forward to the last three weeks and I have started having bowel issues. I have never had any digestive problems for the most part, even when I first started feeling bad. From reading several posts, it seems like most Celiacs have had IBS for quite a while before being diagnosed. I have NEVER been allergic to anything. However, in the last three weeks, I have been passing mucous with my stool, or simply just mucous alone. The first time this happened, it was just mucous. I went to an ENT allergy clinic. He sent me to the local hospital for a blood analysis. They checked my blood for gluten, orange juice and milk allergies. All came back negative. They didn't go into detail about what they looked for, just allergies. Would the gluten allergy test have been for Celiac? Since that time, not that I wasn't already, I have been so fatigued. I can sleep many hours and still be fatigued. I pray for the weekend when I know I can sleep as much as I can. I have even slipped away from work to come home and nap. But strangely, sleep is hard to do sometimes.

Even though my blood test came back negative, I thought I might have Celiac anyway and have eliminated all gluten from my diet. Unless there has been cross contamination of some kind, I have been gluten free for the last few days. I cannot say if I am feeling better yet, maybe a little. I don't know if my stomach is better. It sometimes feels better, but I have been drinking milk and eating dairy, which some say should be avoided. I have ALWAYS consumed a lot of dairy, which makes me mad that it may affect me now. My nose and upper lip seem to be a little better now, not flaking as bad. The very tip is red though, and feels almost like it is sunburned. It is much smoother though, even though it is a little red.

I have an appointment to see a Rheumatologist next week. I have no idea what he will say or want me to do. I am prepared for the same ol' you're fine routine, just take care of that rash. I don't think I will ever be that person I was. I do want to get back to some sense of normalcy and sanity.

I'm sorry this post is so long, but I'm desperate. Feel free to ask me any questions, I don't care. Any advice is appreciated. Should I ask or request anything from the Rhematologist when I see him? Does Celiac behave this way?

Oh, and by the way, I do get a sensation in my back, mid right side. The liver perhaps? This has been for a while now, at least a few months and it is not very noticeable. I can feel it now actually. And sometimes, not lately, my back hurts all over-usually when I stand for a while.

Thanks for reading my ramblings.

[Mother of Jibril]

Welcome to the group!

I think it's a great idea to see a rheumatologist. A lot of autoimmune disorders involve rashes, fatigue, and digestive symptoms. Could you describe the rash on your chest and arms a little more? It is flat or raised, red, itchy, etc... what made you think scabies? Did you see a dermatologist about it? There is a rash associated with celiac disease (dermatitis herpetiformis), but it's very itchy and typically appears on the knees and elbows. You might also think about lyme disease and/or vitamin deficiencies (like vitamin D), but a virus can definitely be the trigger for an autoimmune disorder.

I'm really sorry you're having such a hard time! I don't think celiac would explain all of your symptoms, but it could be part of your problem... it's worth pursuing. If you want to get a celiac panel (a blood test, which is not the same thing as allergy testing) you need to keep eating gluten until all of the testing is complete. Otherwise you could get a false negative.

[Nic38]

Thanks for your reply. I definitely plan to see the Rheumatologist. I will wait and see how that goes. So far, I am not very optimistic at this point. I have still been searching the internet, looking for anything that might be related to my problems. One thing that I have pondered is Candidiasis-AKA: yeast. Yeast continues to come up in searches I do related to my symptoms. I first notice yeast as a factor when I was trying to find out what was causing my mouth to hurt so bad. Yeast was listed as a culprit. I even proposed that to a doctor early on and he said if it was yeast, it would be visible in my mouth. But, according to what I have found, it can thrive and proliferate out of control in the intestines and cause problems. I don't think any doctor will entertain this idea. I don't even know if they will try to test for it. It is associated with the "Leaky Gut Syndrome". I think if I mention that to the doctor, he will only laugh at me.

I did try to go totally sugarless for almost two weeks to starve any yeast in my system. I can't remember if I lasted that long. It was rough, and there was no success.

My rash on my chest and arms looked similar to chicken pox maybe. They were red and raised. The skin would flake off or could be scraped off. There was no oozing underneath and not that much discomfort.

Another thing I will confess and have pondered over time and time again is before my problems, I started using the artificial sweetener Splenda in the tea I would drink for lunch. I used several packets at times. I never have used artificial sweeteners, but I was stupid enough to think it was "safe" since it was "made from sugar". I didn't research it as I should have. I used it for a few months prior to my condition. I have no idea if that has anything to do with my problems. I am shocked to see it is possibly linked to several bad things and is actually a chlorinated compound. It contains chlorine. I'm a little mad at the company, FDA and even myself for using that junk. I wish I never had. I should have known better. It has been maybe 9 months or so since I used it. But, who knows how long it can stay in your system, what damage it has done, or what long term problems it can cause?

I will continue to search for an answer.

Thanks for the help.

[mushroom]

My two cents worth (and maybe that's all they're worth)!!: We have all these specialists who know what they know about what they know. But they are used to hitting fast balls, and when you throw them a curve they miss nine times out of ten. And most of the people you will find on this forum are curve ball pitchers.

So enough of baseball. I have found most rheumatologists make no connection between celiac and rheumatoid arthritis (neither of mine did); I had to (correctly as it happens) tell my periodontist that it was the metal in my crowns that was causing my gums to bleed around my capped teeth; I had to go to an "alternative" M.D. to be treated for my gut yeast infection which was diagnosed by a test ordered by a doctor of Oriental Medicine. So you have to most of the time be your own doctor in deciding where to seek treatment and in deciding whose opinions to trust.

Your rash does sound rather like my psoriasis, which for me was diagnosed after the rheumatoid arthritis; often it is diagnosed before. I had little red disks for years on my arms which would form a silver skin over them and then flake off; had no idea they were a precursor to fullblown psoriasis (and I even asked a senior dermatogist at UCSF about them).

So what I am saying is, you are probably going to have to put this together yourself. Yes, go to the rheumatologist and listen to what (s)he says, but then add in what you know and research yourself. At least get tested for the RA factor (my tests are negative because I have psoriatic arthritis which is a variant on rheumatoid). The only comment I have on alternative sweeteners is that so far as I know the only one that will not harm you is Stevia and it's not artificial--it's from the Stevia plant.

So investigate as much as you can under your insurance, read as much as you can and inform yourself, and then draw your own conclusions as to where you need to go. Cynical??? Maybe, but not without cause!!

[FMcGee]

I second the idea to get the celiac blood panel done. It can answer a lot of questions.

As to Splenda, I went through a phase where I was using it a lot and I think it was making me feel weird (in particular, I had a sore throat), but when I stopped using it, I soon felt better. Your gut can't actually digest chlorine, which is why they add that compound - rather than getting absorbed and digested as sugar, it just goes through your intestines unabsorbed, hence its zero-calorie value. As I said, though, I think it hurt my throat a little. I'm not arguing that Splenda is harmless - it's not - but it isn't like dumping aspartame all over your tea, either. Aspartame is essentially rat poison. Splenda might be causing some of your problems, if you're unusually sensitive to it or something, but I'm not sure it's necessarily the root of the problem. I have lots of friends who use Splenda several times a day and they're just fine. Myself, I just stick with real sugar, which I don't use much of anyway. I don't like "fake" food in general.

[gfb1]

My two cents worth (and maybe that's all they're worth)!!: We have all these specialists who know what they know about what they know. But they are used to hitting fast balls, and when you throw them a curve they miss nine times out of ten. And most of the people you will find on this forum are curve ball pitchers.

So enough of baseball.

there's NEVER enough baseball ....

but, ...

The only comment I have on alternative sweeteners is that so far as I know the only one that will not harm you is Stevia and it's not artificial--it's from the Stevia plant.

So investigate as much as you can under your insurance, read as much as you can and inform yourself, and then draw your own conclusions as to where you need to go. Cynical??? Maybe, but not without cause!!

from center.for.science.in.the.public.interest:

Open Original Shared Link

STEVIA

Natural, high-potency sweetener: powdered dietary supplement and used in diet beverages. Also called rebaudioside A or rebiana (brand names Truvia and PureVia).

Stevia, which is about 100 times sweeter than sugar, is obtained from a shrub (yerba dulce) that is grown in Brazil, Paraguay, southeast Asia, and elsewhere. The actual sweet chemicals are the closely related stevioside and rebaudioside A. Stevia and its derivatives are said to be the holy grail of high-potency sweeteners, because they are naturally derived alternatives to the often-controversial synthetic sweeteners (saccharin, aspartame, acesulfame-K, sucralose, cyclamate). Stevia has been used in Japan and several other countries. Still, many people perceive stevia and its sweet derivatives to have a foul taste in certain foods.

Just because a substance is natural, does not mean that it is safe. In the 1990s, the U.S. FDA rejected stevia for use as a food ingredient. Likewise, Canada did not approve stevia, and a European Community scientific panel declared that stevia was unacceptable for use in food. High dosages fed to rats reduced sperm production and increased cell proliferation in their testicles, which could cause infertility or other problems. Pregnant hamsters that had been fed large amounts of a derivative of stevioside called steviol had fewer and smaller offspring. In the laboratory, steviol can be converted into a mutagenic compound, which may promote cancer by causing mutations in the cells

[CMG]

I agree with mushroom's comments, and also would recommend an alternative medicine doctor if you have access. I went to an alternative doctor 14 years ago, who diagnosed me with yeast syndrome. He put me on heavy duty anti-fungal meds and a yeast-free diet (which, as it turns out, was nearly gluten free). It was the healthiest time of my life. And also the first time a doctor had taken seriously my health issues. Like you, on paper and through standard medical tests I was the picture of health. Yet, I had migraines, chronic fatigue, muscle and joint pain, dizziness, fainting, dental problems, and the list goes on.

Do a search on "complementary medicine" for your area and you might find someone.

Good luck!

[Nic38]

I agree with mushroom's comments, and also would recommend an alternative medicine doctor if you have access. I went to an alternative doctor 14 years ago, who diagnosed me with yeast syndrome. He put me on heavy duty anti-fungal meds and a yeast-free diet (which, as it turns out, was nearly gluten free). It was the healthiest time of my life. And also the first time a doctor had taken seriously my health issues. Like you, on paper and through standard medical tests I was the picture of health. Yet, I had migraines, chronic fatigue, muscle and joint pain, dizziness, fainting, dental problems, and the list goes on.

Do a search on "complementary medicine" for your area and you might find someone.

Good luck!

Thanks for all the help. I will listen to what any of you have to say. It would be so great to be able to say "that" is what made me ill for so long. I have explored or considered every option, from yeast, leaky gut, leaking fillings, Splenda poisoning, and now Celiac. I don't really want to have any of these things, but I'm desperate enough to accept any one of them so I can move on with a treatment.

I'm feeling a little better today. I'm not going to say much about it. I'm a skeptic by nature. So, I will wait and see how things go. I wouldn't think being a week off gluten foods would be making a difference this soon. I will talk to the Rhematologist first and at least see if they will test me for Celiac and whatever else he suggests. I have such a hard time with doctors, they never do what I ask them to do or listen to me. One or two actually have. They always want to tell me how I feel, which is usually, "You're fine!"

We really do have to be our own doctors for the most part. I have really been disappointed in the health care system since I finally had to start using it this last year. I really feel sorry for anyone that has had to deal with the system for years. But, that is another topic.

[Mother of Jibril]

I'm feeling a little better today. I'm not going to say much about it. I'm a skeptic by nature. So, I will wait and see how things go. I wouldn't think being a week off gluten foods would be making a difference this soon.

I noticed a difference in my symptoms (especially the abdominal pain) within 48 hours after I stopped eating gluten. You're smart to be skeptical AND paying attention to your body at the same time.

I have really been disappointed in the health care system since I finally had to start using it this last year. I really feel sorry for anyone that has had to deal with the system for years. But, that is another topic.

Really! I've had some BAD experiences over the last three years too

[BigDogz]

Did your doctor happen to check your B-12 level? Many of the symptoms you mention (sore/tingling mouth, insomnia, panic attacks, heart palpitations, fatigue, depression - among a host of others) are things that can turn up if your Vitamin B-12 level is low.

It might be something worth investigating, but...there's always a but, isn't there? BUT many physicians are taught that a low(er) B-12 level doesn't produce any symptoms of consequence, i.e. it can't make you feel as bad as you're claiming, and they are more often than not taught to go by levels that are far, FAR too low. Most US physicians won't call you B-12 deficient until you're level is under 180. Newer US recommendations are supplementation with levels under 450 but you won't find many physicians who'll agree with that, especially the older ones. The Japanese and Europeans are even more pro-active than the new US guidelines, stressing B-12 supplementation for levels less than 1100-1300!

I would say just about every member of this board has faced what you are facing now...a medical system that doesn't believe you and, worse yet, seems to want nothing more than to label you as some hypochondriacal crack-pot. I've fought my doc tooth and nail the whole way. I pressured him into the B-12 testing but, even though prominent medical journals and the National Institute of Health say that anyone showing a vitamin deficiency accompanied by numb or tingling sensations of the hands or feet (which I had) should be immediately referred for Celiac testing, my doc refused to order any such follow-up for me. I finally resorting to getting testing through "outside" sources like Enterolab, etc. I went gluten-free all on my own, with my doctor still crowing that it was "silly and unecessary" and have felt much better for it - I can't think of even one of my own symptoms that hasn't improved since making that change in my diet!

You are on the right path now, whether you find your symptoms to be due to Celiac or not, because you are empowering yourself. I wish I'd figured that out a lot sooner than I did and stood up for myself...maybe, then, I wouldn't have suffered through 21 years of upsetting, uncomfortable and confusing symptoms that the medical establishment wanted to downplay and wouldn't take seriously.

Good luck...and welcome to the group!

[Nic38]

Did your doctor happen to check your B-12 level? Many of the symptoms you mention (sore/tingling mouth, insomnia, panic attacks, heart palpitations, fatigue, depression - among a host of others) are things that can turn up if your Vitamin B-12 level is low.

It might be something worth investigating, but...there's always a but, isn't there? BUT many physicians are taught that a low(er) B-12 level doesn't produce any symptoms of consequence, i.e. it can't make you feel as bad as you're claiming, and they are more often than not taught to go by levels that are far, FAR too low. Most US physicians won't call you B-12 deficient until you're level is under 180. Newer US recommendations are supplementation with levels under 450 but you won't find many physicians who'll agree with that, especially the older ones. The Japanese and Europeans are even more pro-active than the new US guidelines, stressing B-12 supplementation for levels less than 1100-1300!

I would say just about every member of this board has faced what you are facing now...a medical system that doesn't believe you and, worse yet, seems to want nothing more than to label you as some hypochondriacal crack-pot. I've fought my doc tooth and nail the whole way. I pressured him into the B-12 testing but, even though prominent medical journals and the National Institute of Health say that anyone showing a vitamin deficiency accompanied by numb or tingling sensations of the hands or feet (which I had) should be immediately referred for Celiac testing, my doc refused to order any such follow-up for me. I finally resorting to getting testing through "outside" sources like Enterolab, etc. I went gluten-free all on my own, with my doctor still crowing that it was "silly and unecessary" and have felt much better for it - I can't think of even one of my own symptoms that hasn't improved since making that change in my diet!

You are on the right path now, whether you find your symptoms to be due to Celiac or not, because you are empowering yourself. I wish I'd figured that out a lot sooner than I did and stood up for myself...maybe, then, I wouldn't have suffered through 21 years of upsetting, uncomfortable and confusing symptoms that the medical establishment wanted to downplay and wouldn't take seriously.

Good luck...and welcome to the group!

Funny, I was responding to Mother of Jibril's post and I guess you beat me to the punch.

I typed:

[Yeah, the health care system has been a challenge to me. I have always heard how it was broken and had problems. But I have never been to a doctor much other than my usual dental cleanings. It is easy to see how it is broken in that establishment as well though.

I took a nap earlier. I slept some, which is good. My naps are never long anymore. Before my problems, I could sleep with the best of them. I looooved to sleep. Sometimes, I would come home from a hard workout, take a shower, lay on the bed or couch and not wake up until the next morning. But, I woke up usually rested with no problems.

It seems my naps are cut short because I wake up anxious. I am anxious at this very moment for no good reason. I have read that B12 deficiency may be the cause. So many hurtles to overcome.]

So, maybe I need to look into the B-12 issue? I actually had some B-12 that I have taken the last two days. I don't know if that may have helped. I had the bottle already and took some with my multivitamin, which already has B-12. I don't think I took a multivitamin or B-12 today though. Very interesting.

Even if this is not Celiac, maybe you all can push me in the right direction. Thanks again for all the help.

And by the way, no, my doctor has not checked my B-12 levels. A I said up a post or so, the doctors I have dealt with are very hardheaded and closed-minded. It is very easy to notice how they only will go by their training and have never been the type to learn new things or keep up with breakthroughs and discoveries. I have actually had one ENT and and Endodontist "listen" to me and agree that they don't know everything and I need to explore other avenues. The other few I have been to are highly opinionated and have actually been a waste of my time, and money.

[FMcGee]

So, maybe I need to look into the B-12 issue? I actually had some B-12 that I have taken the last two days. I don't know if that may have helped. I had the bottle already and took some with my multivitamin, which already has B-12. I don't think I took a multivitamin or B-12 today though. Very interesting.

Even if this is not Celiac, maybe you all can push me in the right direction. Thanks again for all the help.

I take a sublingual B-12 (a tablet that dissolves under the tongue) in addition to my multivitamin, which also has it. B vitamins are water-soluble so you can't really overdose on them like you can on A, D, E, and K. I really recommend it. I felt a lot better within a few days of starting the B-12. My sister-in-law gets B-12 shots once a month, and that helps her a lot, too (I think my brother must somehow sap B-12 from people, given that we're both deficient!). Her deficiency is worse than mine, so she has a more intensive treatment. I'd try the pills first, they're not bad.

[Nic38]

I take a sublingual B-12 (a tablet that dissolves under the tongue) in addition to my multivitamin, which also has it. B vitamins are water-soluble so you can't really overdose on them like you can on A, D, E, and K. I really recommend it. I felt a lot better within a few days of starting the B-12. My sister-in-law gets B-12 shots once a month, and that helps her a lot, too (I think my brother must somehow sap B-12 from people, given that we're both deficient!). Her deficiency is worse than mine, so she has a more intensive treatment. I'd try the pills first, they're not bad.

I just now realized my sister has gotten B-12 shots when you mentioned that. Are we related? Heh. I need to see where I can get the dissolving type. Mine are just the plain tablet type. It would be great if this helps.

[BigDogz]

I just now realized my sister has gotten B-12 shots when you mentioned that. Are we related? Heh. I need to see where I can get the dissolving type. Mine are just the plain tablet type. It would be great if this helps.

Interesting! A few other things you need to keep in mind is that there is more than one cause for B-12 deficiency. In addition to Celiac Disease, ahydrochloria (deficient stomach acid - needed to break down foods to properly extract B-12) and a lack of intrinsic factor (an enzyme responsible for absorption of B-12), also known as pernicious anemia. Both pernicious anemia and celiac disease tend to run in families so the fact that your sister is deficient is certainly additional evidence that you could be also. Be aware, though, that most docs are taught that you have to also be anemic to be considered deficient and that isn't the case under the new guidelines.

Also, in order for oral (swallowed or sublingual (under the tongue)) B-12 to be effective you've got to make certain that you're taking at least 1,000 mcg daily, preferably 2,000-2,500 mcg. The reason for the high dose is that, when taken orally, some of the medication won't get absorbed so you have to take a large enough dose to still be effective after that loss. It also helps that you are taking a B-Complex tablet that contains ALL of the B vitamins. People who are deficient in one of the B vitamins is often deficient in the others, as well.

Lastly, if you are planning to push for the B-12 testing, it's probably best that you don't take any additional B-12 beyond what you have been taking long-term with the B-Complex pill. If you continue to take additional and get the testing, it could appear as though your levels are fine when they really weren't.

Then, of course, there are folks like me that are what they call 'short responders'. We can get a B-12 injection and it bumps our levels for unusually short periods of time. The usual maintainence dose is 1,000 mcg injection every month. I'm such a short responder that I take a 750 mcg injection every DAY! My doc is hopeful that I'll be able to stretch out the time between doses the longer I'm on a gluten-free diet and the healthier my GI tract becomes and, therefore, is better able to absorb the B-12 through my food the way it's meant to be.

One other avenue you might need to investigate is your thyroid function. Low or high thyroid levels can really do a number on the way your body functions and some of your symptoms fit nicely into that scenario, too.

[Nic38]

Interesting! A few other things you need to keep in mind is that there is more than one cause for B-12 deficiency. In addition to Celiac Disease, ahydrochloria (deficient stomach acid - needed to break down foods to properly extract B-12) and a lack of intrinsic factor (an enzyme responsible for absorption of B-12), also known as pernicious anemia. Both pernicious anemia and celiac disease tend to run in families so the fact that your sister is deficient is certainly additional evidence that you could be also. Be aware, though, that most docs are taught that you have to also be anemic to be considered deficient and that isn't the case under the new guidelines.

Also, in order for oral (swallowed or sublingual (under the tongue)) B-12 to be effective you've got to make certain that you're taking at least 1,000 mcg daily, preferably 2,000-2,500 mcg. The reason for the high dose is that, when taken orally, some of the medication won't get absorbed so you have to take a large enough dose to still be effective after that loss. It also helps that you are taking a B-Complex tablet that contains ALL of the B vitamins. People who are deficient in one of the B vitamins is often deficient in the others, as well.

Lastly, if you are planning to push for the B-12 testing, it's probably best that you don't take any additional B-12 beyond what you have been taking long-term with the B-Complex pill. If you continue to take additional and get the testing, it could appear as though your levels are fine when they really weren't.

Then, of course, there are folks like me that are what they call 'short responders'. We can get a B-12 injection and it bumps our levels for unusually short periods of time. The usual maintainence dose is 1,000 mcg injection every month. I'm such a short responder that I take a 750 mcg injection every DAY! My doc is hopeful that I'll be able to stretch out the time between doses the longer I'm on a gluten-free diet and the healthier my GI tract becomes and, therefore, is better able to absorb the B-12 through my food the way it's meant to be.

One other avenue you might need to investigate is your thyroid function. Low or high thyroid levels can really do a number on the way your body functions and some of your symptoms fit nicely into that scenario, too.

So many things to consider. I looked up B-12 deficiency symptoms and was surprised that I had many of them. It also appears that I may have anemia. My gums will bleed for no reason. I am not pale like I would expect though. If I take a Q-tip and rub along my gum line as I did this morning, I frequently have some blood on it. I have told the doctors about this and none have seemed to say anything. Why haven't they picked up on this as being a possible deficiency? Even the periodontists and dentists said I was fine. I'm sure they were looking for gum disease. I asked the last periodontist if he thought it was strange that I have bleeding along the gums and pain and he said I was brushing too hard. I have an extra soft toothbrush and have been very careful and even have a Waterpik and rinse at times to avoid any abrasion.

I definitely need to have a "grocery list" of things to check when I see the next doctor. I have been relying on them a little too much to find out what my problem is. It seems that most of them really don't know anything. It is sad, but it seems to be true. Maybe I am not animated enough when I talk to them. I think they get the impression because I am very calm, that I am not miserable.

I also looked up Hyperthyroidism and I have many of those symptoms, although many of the symptoms for all of these things seem to be similar. The most notable one was Heat Intolerance. I have always liked hot weather. In the past, I could work outside in 90 degree weather all day and it never bothered me. I can't do that now.

I really appreciate all the help. I haven't had to pay for any of it and I have gotten more help in a couple of days from you all than I have in a year from the medical community.

[BigDogz]

I really appreciate all the help. I haven't had to pay for any of it and I have gotten more help in a couple of days from you all than I have in a year from the medical community.

As I said before, we've all been where you are now...fighting to get someone to listen and do something about symptoms that are REAL and not just "in your head" like so many physicians want to claim. I'd love it if I could help even one person avoid the decades long run-around I dealt with.

The number one key is to stand your ground. Don't let dismissive docs derail your search for answers. If a doctor isn't paying attention to you and you're not satisfied, move on. There are other doctors out there and, eventually, you will find one that WILL listen. I finally found one and she's been great to work with...supportive and non-judgemental. Don't be afraid, either, to look at some of the home testing kits that are available on the Internet until you can find a doc that works for you. It's quite possible that, if you go with home testing results in hand, your doctor will realize that he has no choice but to take you seriously.

Last but not least, you can always go gluten-free regardless whether you pursue testing or not. If you feel better after a period of being gluten-free then I'd say you pretty much proved the point. There's certainly nothing to lose by trying it!

[Nic38]

As I said before, we've all been where you are now...fighting to get someone to listen and do something about symptoms that are REAL and not just "in your head" like so many physicians want to claim. I'd love it if I could help even one person avoid the decades long run-around I dealt with.

The number one key is to stand your ground. Don't let dismissive docs derail your search for answers. If a doctor isn't paying attention to you and you're not satisfied, move on. There are other doctors out there and, eventually, you will find one that WILL listen. I finally found one and she's been great to work with...supportive and non-judgemental. Don't be afraid, either, to look at some of the home testing kits that are available on the Internet until you can find a doc that works for you. It's quite possible that, if you go with home testing results in hand, your doctor will realize that he has no choice but to take you seriously.

Last but not least, you can always go gluten-free regardless whether you pursue testing or not. If you feel better after a period of being gluten-free then I'd say you pretty much proved the point. There's certainly nothing to lose by trying it!

Thanks again.

I am still gluten free. I am not changing that for a while. I will stay gluten free if it means that my health will improve. Whether I am Celiac or not, my stomach has improved. I am no longer having the problems like I was. Although it is still not right either. I can speculate that if there is any damage to my small intestine, nutrients are not being absorbed very well. I read that can take months to heal. I am not gaining weight, despite drinking milkshakes. Thank goodness, it seems I am not lactose intolerant. The ice cream is gluten free by the way. I can't believe that just over a year ago I didn't feel like this. I have taken some B-12, a multivitamin, Folic acid, and Acidopholus today. I will take some more once I write this. No panicy feelings today. Maybe it has helped. I'm still fatigued though. I slept til late today.

I am preparing myself for what the doctor will say, which will probably not be much. I plan to see him with at least a list of what I want him to check. They can be so hard-headed though. I don't want to draw conclusions about this guy. A couple I have talked to did listen, although they had no explanation or good advice. (Well, the ENT is the one that scheduled my Rheumatologist appointment for me.) It seems that a Rhematologist that deals with various disorders will be open to any possibilities. But, shouldn't they all?

[Nic38]

I saw the Rheumatologist today. No surprises. Just the usual blank stare and the statement that my symptoms could be "anything". In the end all I got from him is "Well, we can run some blood tests."

I had to make him screen for B12/B6. He wasn't even going to put that down. He put folates on the request too. I don't have my lab paper with me, it's in the car, but they are not looking for much. I don't know why they don't screen for multiple things and everything I ask for. I guess it is their way of continuing to have you come back.

It will not surprise me that my B12 levels will be normal. I told him I had been taking a B12 supplement. He said it will not matter for the blood test. I mentioned Celiac, he had no comment. I'm not sure if he was aware of what it was.

I'm just about done with doctors. I have another appointment with him in about a week. That is when the blood tests will be back. I will have to take time from my schedule and drive to the next town over (that is where he is) and hear him say everything is normal. I don't understand why they can't just call me and tell me the results. But, there would be no copay and insurance claims for that I guess. It really is a business like no other.

I think I am going to explore the B12 injections. Since going off gluten. I have been improving. The bathroom part has definitely improved. Coincidence? I have no sure way of knowing. My mouth still hurts and my energy levels are low. I think I do have a bit more energy though. My rash on my face is getting better. I hope it is going away for good.

It would be great if all I needed was B12 shots, but I'm getting ahead of myself.

[FMcGee]

Is there another doctor you can go see? This guy sounds like a bad egg, but not all doctors are.

And, I hear you - I think a lot of us wish the only thing wrong with us was X. I'm glad you're feeling somewhat better!

[Mother of Jibril]

It will not surprise me that my B12 levels will be normal. I told him I had been taking a B12 supplement. He said it will not matter for the blood test. I mentioned Celiac, he had no comment. I'm not sure if he was aware of what it was.

For some doctors, your B-12 level has to be REALLY LOW before they consider taking action As long as you're driving to the next town to get your results, get a photocopy! Then you can see the actual numbers and guage for yourself how "normal" your levels are. BTW... if you're taking supplements, the sublingual kind are better for delivering the vitamin straight into your bloodstream. You can buy them in any health food store... you just have to hunt (it's a tiny bottle).

[Nic38]

For some doctors, your B-12 level has to be REALLY LOW before they consider taking action As long as you're driving to the next town to get your results, get a photocopy! Then you can see the actual numbers and guage for yourself how "normal" your levels are. BTW... if you're taking supplements, the sublingual kind are better for delivering the vitamin straight into your bloodstream. You can buy them in any health food store... you just have to hunt (it's a tiny bottle).

I really hate to go back just to have the doctor give me that usual blank look again. A lady called and said they would not have the blood work back in time for my next appointment and I should reschedule. I canceled the appointment for now and I am trying to think of a way to have them just send me the results without another appointment. I just want to know the numbers. The doctor will not have anything helpful to say one way or the other. None have so far.

I did find the sublinguals. I have been taking those. I can say that without a doubt that I have improved. I cannot give the actual reason for the improvement. I seemed to have improved a little since I went off gluten. But it seems I have started feeling better since I started using the sublinguals a few days ago, although I was taking the regular pills before and even increased the number I was taking. I have a ways to go, but my mouth pain seems to have diminished, but not entirely. My energy seems to be coming back. My rash on my nose and lip have almost gone. No one but me would notice it now. The skin is smoother and not so dry and not flaking at all.

I'm still trying to figure all this out. I think you all have put me on the right path. I just wonder if this is only an absorption issue. If so, what triggered it? I seemed fine just over a year ago, and then this kicks in. Although in retrospect, I did have weight loss before I started feeling bad. Should I try gluten foods again? I really don't want to start feeling bad again. I would like to know what the problem is though. If it is not gluten foods, that would be one less thing I will have to worry about. I don't think a doctor will tell me, or tell me correctly. I think I will stay off gluten for now and see how things go.

[BigDogz]

I really hate to go back just to have the doctor give me that usual blank look again. A lady called and said they would not have the blood work back in time for my next appointment and I should reschedule. I canceled the appointment for now and I am trying to think of a way to have them just send me the results without another appointment. I just want to know the numbers. The doctor will not have anything helpful to say one way or the other. None have so far.

I'm glad to hear that you're feeling at least a bit better. Whether the root of the problem is gluten-related or related to just a low B-12, it may take some time before you're feeling back to your old self. I know for me, the longer I'm gluten-free the more energy I've had and the better I feel overall.

It might be possible for you to get a copy of your lab tests without going to your doctor. There are a set of patient rights that you are entitled to (I'm referring to the US here, have no idea about Europe) and one of the biggest is the right to access your own medical record. That means that you are permitted to view and/or receive copies of items pertaining to your health. You'll need to contact the lab or hospital that did your bloodwork for you and ask them what procedure they use to obtain the results you're looking for. Most likely, they will ask that you physically present yourself (with ID to prove you are who you say you are) to the lab or hospital where the work was done and sign a release paper before they'll turn over any results. HIPAA (the law that protects your health info. from going to just anyone without your permission) is behind the need to show up in person, show a picture ID and sign the release form.

The only caveat I have in this is that you won't have anyone who's medically trained to interpret your results for you which could result in something being missed. I completely understand your frustration with your doctor. I think probably all of us can. Heck, I dealt with my intestinal issues and dismissive doctor for 20 YEARS. It was a full year since I'd started suspecting celiac disease before I found a doc who's been great. What I'm getting at is this. Your current doc is a big jerk but you can't let him/her beat you down. You need to look around for another doc. Take your health history and lab results with you. If the next one's a jerk, too, keep looking. Eventually, you'll find one that will help. Your health is way too important for you to either ignore it or, worse yet, hope that you'll just stumble blindly into the reason you feel so bad. Consider having testing for celiac disease done by Enterolab, Prometheus or one of the other labs that don't require a doctor's order to do the testing. If you test negative for the genes that are responsible for gluten-sensitivity/celiac disease then you can write that diagnosis off and continue your search for answers elsewhere. Lastly, you can did your own, home gluten challenge. Maintain the gluten-free diet for at least one month, noting whether your symptoms improve, or not. Then, go back to eating a gluten-containing diet and make sure to note any return of your symptoms - which ones, how long it took, etc. If your symptoms return when going back to a gluten-containing diet, I think your body pretty much proves the point for you.

[Nic38]

I actually received a call from the doctor's office yesterday from a lady about the blood test. She said all the tests came back negative. No surprise there. I even told her that before I realized what I was saying. This test did include B12/B6/folates. she did not quote numbers though, but just said "negative".

I was really surprised they called. Like a dummy, I forgot to ask her to send those to me for my records. I don't know why that didn't cross my mind. I was going to call back today, but was too busy. I will probably call back tomorrow. I am pretty confident I can get them mailed to me.

I am feeling MUCH better by the way. Not how I want to be yet, but I think I have improved quite a bit compared to how I was about 3 or so weeks ago. I have not only improved physically, but mentally as well. I can't explain it really, I just know I am better than I was. I have to deal with the public quite a bit. It has really been a struggle communicating with people over the last year. It seemed like I had to put a great deal of effort into what I was saying-stuff I have said a million times before. Today, was totally different. I just hope I continue to go in this direction.

The question now is my improvement because of:

1. Coincidence

2. Being Gluten free

3. Taking B12 sublinguals like tic tacs for a few days

4. A combination of 2 and 3

5. It being all in my head

6. Or something else altogether

It is obvious the doctors are not going to be of any help. I am pretty much done with them unless I HAVE to go back. Also, my mouth pain has diminished somewhat as well. Not gone yet, but at times I have not even noticed it. I did check last night and still can get blood on a q tip by rubbing the gumline. Not much, but enough to tinge the swap. Remember, bleeding gums are a sign of B12 deficiency.

I think the B12 supplements may have helped me some. I even tried see if I could get a B12 shot today. I figured it could not hurt. Of course, I was unable to find anything in the phone book that said "B12 Shots", so I called a couple of physicians. The first was a Naturopath (the only one in the book) in hopes they might be a little bit more receptive to my request. They referred me to another physician. I talked to the receptionist there. After putting me on hold, she said I would have to make an appointment, be evaluated by the doctor, be given a prescription (if the doctor thought it necessary), take the prescription to a pharmacy, then come back to have the shot administered. I laughed and said thanks and bye. I didn't even get into the argument that this is a vitamin we are talking about. I think I will probably get the run around on that no matter who I call.

I did talk to my sister who gets the B12 shots-once a week I think she said. Apparently, she started getting them just for energy purposes and no illness or diagnosis of any kind. She did not mention anything about the difficulty of getting them. So, I take it she has not had a problem with that.

I plan to stay gluten free for a while. It has been just about two and a half weeks maybe since I went gluten free, I am improving somehow and if that is the cause, then I want nothing to do with gluten. At the same time though, I would like to eliminate that as a cause if I can. I will have to think that over before I decide what to do.

I have even considered the Enterolab option. I admit, I'm a skeptic by nature. Aside from the price of the test, I really have no idea how reliable they are.

Many things to consider. Keep the advice coming. It has been a big help.

[BigDogz]

I actually received a call from the doctor's office yesterday from a lady about the blood test. She said all the tests came back negative. No surprise there. I even told her that before I realized what I was saying. This test did include B12/B6/folates. she did not quote numbers though, but just said "negative".

I was really surprised they called. Like a dummy, I forgot to ask her to send those to me for my records. I don't know why that didn't cross my mind. I was going to call back today, but was too busy. I will probably call back tomorrow. I am pretty confident I can get them mailed to me.

I'm not at all surprised that all they said was "negative". Most doctors are trained that, if your results fall into the ranges provided by the lab than you can't possibly be having symptoms. Unfortunately, that is NOT the case. You have to keep in mind, too, that those so-called "norms" are basically the brainchildren of a group of guys who gather in a room and come up with a bell curve of numbers that MOST people fall into. Those numbers usually involve a rather large spread and most certainly don't cover ALL of the population...just the "average". Lab ranges will ALWAYS miss those individuals that can tolerate lower ranges without detrimental effects/symptoms as well as those who are higher than the upper range and are having symptoms they supposedly "shouldn't" be having. You definately need to got hold of your lab results and find out what the actual numbers are. The newest American standard for B12 is that some people can experience symptoms of deficiency with a level less than 450 pg/ml. European and Japanese standards recommend a low of 550 pg/ml and suggest a preferred level of 1100-1400 pg/ml. I'll be interested to see just where your "negative" result lands.

Again, I want to stress that you have a right to anything in your medical record...after you sign the release...so don't let your doctor's office staff try to fool you into thinking you can't have it. They may ask you to pay for the copies and that is legal. In that instance, you're paying for the staff member's time to look it up and the office supplies used to make the copies (paper, Xerox toner, postage, etc.) If they still refuse to give them to you, you may have to threaten to report them for a HIPAA violation. That federal law primarily covers issues of privacy regarding who can and can't see your medical records, but it also protects your right to see them, as well.

I am feeling MUCH better by the way. Not how I want to be yet, but I think I have improved quite a bit compared to how I was about 3 or so weeks ago. I have not only improved physically, but mentally as well. I can't explain it really, I just know I am better than I was. I have to deal with the public quite a bit. It has really been a struggle communicating with people over the last year. It seemed like I had to put a great deal of effort into what I was saying-stuff I have said a million times before. Today, was totally different. I just hope I continue to go in this direction.

The question now is my improvement because of:

1. Coincidence

2. Being Gluten free

3. Taking B12 sublinguals like tic tacs for a few days

4. A combination of 2 and 3

5. It being all in my head

6. Or something else altogether

It sounds to me as though your improvement is probably related to the combination of being gluten-free and taking the B12 supplements. No matter what the cause, you're feeling better by doing what you're doing so what would it hurt to keep it up? Even licensed doctors consider B12 to be low to NON-toxic even in massive doses. Vitamin B-12 is a water soluable vitamin so any that is taken above and beyond what the body needs will be quickly and easily excreted by the kidneys through your urine - B12 makes it a real pretty "neon" yellow.

It is obvious the doctors are not going to be of any help. I am pretty much done with them unless I HAVE to go back. Also, my mouth pain has diminished somewhat as well. Not gone yet, but at times I have not even noticed it. I did check last night and still can get blood on a q tip by rubbing the gumline. Not much, but enough to tinge the swap. Remember, bleeding gums are a sign of B12 deficiency.

I think the B12 supplements may have helped me some. I even tried see if I could get a B12 shot today. I figured it could not hurt. Of course, I was unable to find anything in the phone book that said "B12 Shots", so I called a couple of physicians. The first was a Naturopath (the only one in the book) in hopes they might be a little bit more receptive to my request. They referred me to another physician. I talked to the receptionist there. After putting me on hold, she said I would have to make an appointment, be evaluated by the doctor, be given a prescription (if the doctor thought it necessary), take the prescription to a pharmacy, then come back to have the shot administered. I laughed and said thanks and bye. I didn't even get into the argument that this is a vitamin we are talking about. I think I will probably get the run around on that no matter who I call.

I did talk to my sister who gets the B12 shots-once a week I think she said. Apparently, she started getting them just for energy purposes and no illness or diagnosis of any kind. She did not mention anything about the difficulty of getting them. So, I take it she has not had a problem with that.

In the US, vitamin B12 is considered a dietary supplement - as long as it's in pill form. In the injectable form it inexplicably becomes a "medicine" and is subject to the requirements of being prescribed by a physician. Then, of course, you've got to add in all of the various STATE laws that complicate whatever ridiculousness the Feds proclaim. Not all countries have such goofy views on vitamins no matter whether they are pills or injectables. You can look around on the Internet to see if you can buy some from another country like Canada or Australia that don't have the stupid US rules and have it shipped in...but you are, of course, taking the chance of getting caught violating US laws as well as possibly getting medicine that's not produced under conditions that are up to the US FDA standards. It sounds, too, as though your sister might be a good resource for finding out how to get shots.

I plan to stay gluten free for a while. It has been just about two and a half weeks maybe since I went gluten free, I am improving somehow and if that is the cause, then I want nothing to do with gluten. At the same time though, I would like to eliminate that as a cause if I can. I will have to think that over before I decide what to do.

I have even considered the Enterolab option. I admit, I'm a skeptic by nature. Aside from the price of the test, I really have no idea how reliable they are.

Many things to consider. Keep the advice coming. It has been a big help.

As a rule, the testing labs seem to have a good accuracy rate. Although, if you are one of those individuals who is IgA deficient or just have a low IgA level, your antibody testing results could appear falsely negative, making it appear as though you don't have a gluten sensitivity when, in fact, you do. The only thing that I can say I'm disappointed about Enterolab is that they don't do the full genetic testing. They test for the beta chains of the genes but not the alpha chains. In order to get the complete genetic picture you really do need to know both chains. Had I known all of that beforehand, I probably would have opted not to use Enterolab and gone with Prometheus as they do the full genetic testing profile.

[Nic38]

Thanks.

As I have said, I am looking into all possible causes. One thing I have also considered and dismissed has been mold. I had a washing machine hose come off due to overly high water pressure in my home. I think it was late 2007, so it would be about a year and a half ago. A good portion of the house was covered in water. Mostly the computer room I am in now, which is carpeted. It took two days for me to vacuum up the water. The only problem I had was that I did not wait long enough for the carpet to dry where my chair mat sits. It became a little musty underneath and the smell never totally went away. I noticed a musty smell again about a month ago. I think this has possibly been due to the unusually wet season we have had and the high humidity. But, now I am wondering if there could be a link to that and my problems? Mold toxins?

I didn't mean to go off on a tangent with this post, but I can't exclude anything at this point. Also, I have not mentioned this to any doctors, so, that is my fault. I have not really had any respiratory problems, although my sense of smell has been off for a while. It seems pretty good right now since I am feeling better. I AM feeling better, so I don't know if I would improve with mold more or less still here.

When it was smelling bad again a month ago, I even went to a carpet store and talked about replacing it. I was committed to doing it, but they never called me to schedule the installation and the smell went away in the meantime-really it never went away but just improved quite a bit.

Now that my paranoia has kicked in, I am wondering about this again now. Actually, a little while ago I just took a utility knife and made a slit in the carpet and checked underneath. The carpet is actually quite clean, although noticeable musty where my chair mat sits. There was no black mold or staining evident. It looked in good shape overall. Well, one thing lead to another and I ripped up all the carpet from the room. Its a small room. I decided to rip it all up because I noticed the slab underneath looked great and has even been painted. The previous owners must have used it bare. I may tile or paint it again later. I don't think I will put carpet back down.

So, there is another theory I have just thrown out there. I did a little googling and mold does cause some of the symptoms I have had. But, many things do.

I may eat my words and go back to the ENT that scheduled my allergy tests for gluten and see about having a mold allergy test. I would think that perhaps if mold is an issue it would pick that up?