What's Wrong With Me!

[cupp125]

Hi, I'm new to the board, and going through some frustrating health things that I really think are a result of my Celiac Disease. I was diagnosed with celiac disease about 2 and a half years ago, and ever since, I've been having some pretty strange and to be quite honest scary symptoms. I've been to ten doctors in the last two years and none of them have helped me even a little bit. They don't seem to know much about Celiac other than the name, and they refuse to listen to me. I went 22 years wtih Doctors telling me I was crazy before they figured out I was a Celiac. I feel like the same thing's happening now!

I've had chest pains, mostly on the left side of my chest, sharp and stabbing for a few seconds at a time, multiple times throughout the day. I get them sometimes on my right side, but nowhere near as frequently. I also have very sharp pains in my left arm, the fingers of my left hand, my left leg (especially the calf), left ankle, and left foot. The pains happen on the right side too, but again, not nearly as frequently. I've also had an elevated heart rate (90-107 resting!), and palpitations. My heart, every once in awhile, skips a beat....just this long, scary pause before it kicks up again. Also, for two years now, I've been itching like crazy! There's no rash or marks though. Every inch of my skin just explodes in itching and I can't sleep for even a second. Lotions, etc. only make it worse.

So I started taking Benadryl for the itching and it worked, but after two years on it, my body had a very, very bad reaction to it. I was sitting in bed, watching a movie, got very dizzy, couldn't breathe, and my heart was pounding. I went to the ER and they hooked me up to an IV. The doctor told me to take Zyrtec instead, but it did the same exact thing. Now, I can't take any antihistamines because they make me feel so bad, but the itching is insane. It's driving me nuts. I've seen two different dermatologists who were NO help.

My heart has been checked so many times with no results. EKGs have all come back fine. I had a sonar cardiogram that showed nothing, a stress test was fine, multiple chest x-rays, all fine. But the pain continues, and the palpitations continue, and they're only getting worse.

I hate to admit this, but I actually wept in the doctor's office yesterday, begging him to help me, and he just prescribed another antihistamine. I threw the prescription away. He had no idea what Celiac was.

I stick to the diet pretty well. My stomach really, really bothers me when I don't, so I have to. Also, the itching doesn't seem to happen with gluten, because my stomach really lets me know when I get some of the bad stuff. The itching is just all the time, regardless.

I'm really, honestly at my wits' end. I just don't know what to do. All of my symptoms are getting worse, and nobody will listen to me. No doctor will help. I have an appt. in ten days at the U. of Chicago Celiac Center, and they're really my last hope. I just don't know what to do and I thought I'd post and see if anyone else had symptoms like this.

Thanks in advance.

[Ursa Major]

Have you been checked for nutritional deficiencies? My heart used to go crazy when I was anemic (low ferritin), but also when I was low on potassium at one point. A magnesium deficiency can also cause heart trouble.

You may be low in vitamin D, B vitamins (especially B12 and/or B6) as well.

So, unless those levels have been checked recently, you ought to have your levels of ferritin, hemoglobin, vitamin D, magnesium, calcium, B12 and B6 checked.

Low levels in those nutrients can also cause neurological symptoms like severe itching.

[imhungry]

That's a good idea regarding the vitamin deficiencies. I struggle with that too. It could be potassium low causing the cramping....

[ptkds]

I don't know what could be wrong, but if you find out let us know! I also have an elevated heart rate. When I lay down, my heart just pounds and I can feel my pulse throughout my head, neck, chest, and arms. It drives me nuts. I have also had some tests run w/ no diagnosis. All they have done to me is an EKG and and Echo. I also have itcy skin, but mine is related to gluten. I get itchy a few days after I have gluten, and it lasts for weeks. I also have joint pain and stiffness and fatigue. My latest dr told me it sounded like I have Adrenal fatigue. He didn't even order any bloodwork or anything.

Keep us updated. I am interested in what the next dr tells you.

[cupp125]

I can't believe I waited so long to join this messageboard. Honestly, it feels so good to just have people who know what Celiac Disease is! Thank you so much for taking the time to offer feedback. As you can imagine, I'm so frustrated with these issues.

My doctors have run a ton of blood tests, but I'm not sure if the vitamin deficiencies would have been in those workups. If they were, then they were fine; but if not, my doctor really needs to get it together. The only thing they've ever found is a high billirubin count (my Dad and brother have Gilbert's so they assume I do too), and one time a anti-nucleii body (sp?) came back high, but it went right back down.

It's a mystery to me, but a terrifying one. I'm glad that I'm not alone, and I'll definitely keep you posted when I get back from the Celiac Center here in Chicago. Man oh man, do I hope they can help me.

- Colby

[mushroom]

I've also had an elevated heart rate (90-107 resting!), and palpitations. My heart, every once in awhile, skips a beat....just this long, scary pause before it kicks up again. Also, for two years now, I've been itching like crazy! There's no rash or marks though. Every inch of my skin just explodes in itching and I can't sleep for even a second. Lotions, etc. only make it worse.

I've had these symptoms too. I found out that the elevated heart rate and palpitations were related to gluten and have now gone away, as has the skipping heart beat. That can be scary! Sometimes it would skip several, beat for another ten or so, and then repeat the process. I had to just deep breathe and not panic and wait for it to pass.

I have also had the itchy skin business for the last couple of months. Some with no trace of rash at all, some with hives, some with a bright red, hot rash which kept me awake all night with night sweats to boot. I discovered hidden (to me) gluten, since I was under the impression that it was OK to drink scotch for some reason and now that I am gluten-free (since Nov. 07) an occasional scotch was setting that off. That last rash and the hives are now subsiding, and the allover itching no longer has me "itching" to scratch. Like you, I don't do antihistamines and the only thing that helped a little was cortisone cream.

In addition to the above suggestions from others I would make sure you are not getting some accidental gluten somewhere, but I am sure you are very careful. I just thought I was too.

[GlutenGalAZ]

cupp125

Watch out what type of allergy medicine you take. I have a high pulse and take a beta blocker to help keep is down. Some allergy medicines have decongestants in them which will make your pulse race (just like Sudafed would make your pulse race as well). When I asked my dr what over the counter medicine I could take he said Claritin original (not D).

Couple years ago I did a echo scan on my heart, stress test and the 24hr and 30 day event monitors and nothing showed up. My dr did put me on a beta blocker to help keep my pulse down (it was 90-120) which has helped alot. They just said that everything looks good but you have a fast pulse, it may go away or may not. I have noticed when I don't eat healthy or take in too much sodium my chest hurts (heart flutters, pain, feel light headed and much more).

Being on a gluten free diet has not only helped with my stomach issues but also I think has played a part in helping with my heart rate. With not eating a lot of the food that I was (eating healthier now) I am not getting heart flutters -- maybe every couple month if not any (not sure if that is the correct term but that is how it feels and how I describe it), chest pain, my heart rate has gone down some and I am not getting light headed as much as I was.

I wish you the best of luck with figuring everything out. I hope you can find out why your heart rate it up. Might want to look up Tachycardia Open Original Shared Link.

Best of luck!

[cupp125]

cupp125

I wish you the best of luck with figuring everything out. I hope you can find out why your heart rate it up. Might want to look up Tachycardia Open Original Shared Link.

Best of luck!

Thanks so much for all of the support everyone. Brief update: I basically just took myself off of the antihistamines altogether and my heart rate went back to normal. The fluttering and pains are still there, but I'm trying my best to eat as carefully as possible. The lightheadedness and rapid heart rate problems got better each day the meds were out of my system; unfortunately, the itching came back something fierce. I've been slathering myself in Dove lotion (I read it was gluten-free), and it does help some, but I woke up about twenty five times last night because of itching. I'm starting to think more and more that it's gluten related because my stomach was hurting as well...something is sneaking in somewhere, so my plan is to eat as close to raw foods as possible to really clear my system. Less than a week until I see the Celiac specialist....really hoping they'll have some help! I'm glad to hear so many of you say that you had similar issues and it was gluten-related. These problems are terrifying, and having some others share their experiences helps to calm me. So thank you!

- Colby

[pele]

My advice is make sure you get copies of all test results and read them. If there are abnormalities, find out what they are. I did this and discovered several things that no one bothered to mention to me, like low iron, low WBC and some liver abnormalities including high billirubin. I also itch like crazy sometimes and discovered that itching can be a symptom of liver disfunction. I also learned that my abnormal blood protein is most likely a liver issue, not dietary, as one health practitioner told me.

According to an article here on ceilac.com, about half of newly diagnosed celiacs have abnormal liver panels and it can take up to ten years to normalize.

When I first went gluten-free I did not use any probiotics and now I wish I had. Years of inflammation and undigested food in the gut is manna for unhealthy bacteria, which can also cause itching and lots of other problems.

I hear you with the doctor issue. I saw a self-proclaimed celiac specialist who told me the the gut heals completely 3-4 weeks after eliminting gluten. This contradicts some of the research published here on ceilac.com.

Anyway, best of luck with the appointment and please let us know how it goes.

[loraleena]

Elevated and skipping heart rates can be caused by any allergy not just gluten. You may have other foods that you have issues with. Reactions to foods can take anywhere from immedieately to 3 days later.

[Nancym]

Some of the stuff sounds like hyperthyroid like the sleeplessness, itchy skin, racing heart, anxiety and palpitations. Have they check your thyroid? I had Graves disease and had all those symptoms. The stabbing pains, I'm thinking B vitamins might be low due to your celiacs. Find a good B supplement and then add a B12 supplement to that (sublingual). They're water soluble so if you take too much it just gets flushed out, so no worries about a toxic buildup.

[VioletBlue]

You're not crazy. As other's have pointed out mineral and vitamin deficiencies can impact how well your brain and your thyroid work. Your brain and thyroid play a big part in regulating heartbeat and NERVE function. The sharp pains could simply be nerve damage. I was getting brutal stabbing pains in my arms and legs for awhile there; like someone was jabbing a white hot needle into my body. And deficiencies can all produce irregular heart beats, at least in my experience. Once I got my iron and vitamin levels back up the irregular heartbeat went away. It only comes back if I'm having an allergic reaction to something. Pineapple is one of the foods that seems to impact me the most with irregular heartbeats and elevated heart rate. Have you tried doing some kind of elimination diet to see if there's something you're routinely eating that is bothering you?

I have also had itching issues, extreme to the point of crying. It was just all over itching and I have dermographia as well so on my skin you see every single scratch. Claritan does help, but it takes almost an hour for it to kick in for me. Capsicum cream can only work if you have a couple key trigger points that set of the itching; places where you itch the most. If you can quiet the trigger points you can sometimes ramp down the overall itching. At least that is what I found. But be careful with the capsicum as it's pure hot pepper. It's wonderful at deadening nerves in the skin. It's over the counter, but talk to the pharmacist about it and follow the directions carefully, applying with non porous gloves if you can.

I also found that I have a couple food allergies who's immediate reaction is intense itching. I was eating a lot of potato chips just because I could. Pretty much every type of chip on the market contains some level of sunflower oil. It turned out I was not only allergic to potatoes but intensely allergic to sunflowers. The worst of my itching went away when I banished sunflower oil and cucumbers from my diet. So the itching could be aggravated by some kind of allergy to something you inadvertently eat every day, something as simple as safflower oil or potatoes or olive oil.

I think you're best bet is to try and elimination diet, take it back to basics and see if that helps.

You're not crazy. Many of us have been where you are. The doctors don't have the answers. Many many of us have had to figure this all out on our own.

[ehrin]

Are you taking any other medicactions? If you are you could be having a histamine reaction to one of the secondary ingredients. I know personally if I take a pain med, such as viodin, I have a horrible reaction!

[geoff1970]

I've had chest pains, mostly on the left side of my chest, sharp and stabbing for a few seconds at a time, multiple times throughout the day. I get them sometimes on my right side, but nowhere near as frequently. I also have very sharp pains in my left arm, the fingers of my left hand, my left leg (especially the calf), left ankle, and left foot. The pains happen on the right side too, but again, not nearly as frequently. I've also had an elevated heart rate (90-107 resting!), and palpitations. My heart, every once in awhile, skips a beat....just this long, scary pause before it kicks up again. Also, for two years now, I've been itching like crazy! There's no rash or marks though. Every inch of my skin just explodes in itching and I can't sleep for even a second. Lotions, etc. only make it worse.

Hello

Have had all your symptoms and I found they were all food allergies or intolerances (probably Irritable Bowl Syndrome as the root cause) To get rid of the chest pains and heart palpitation's (Premature ventricular contractions, ie extra beat, pause then a big beat) I had to remove ALL grains and Nuts and Legumes. To get rid of the itching I had to remove all fruit and veg except lettuce and spinach. Fruit and veg juice is okay. Also removed all food additives. The heart palpitations were still there after this but only maybe 20 a day (from hundreds originally) and they are now down to 4-5 by taking B-Vitamins, Iron, copper, Magnesium and increasing potassium (have only been gluten and grain free for three weeks so the symptoms do go fast once you eradicate the food groups) - easiest way is just to eat meat, poultry and lettuce and spinach for a few days to see how things improve. I also cut out dairy, but so far have re-introduced whey protein and cream with no ill effects.

Hope this helps

Geoff

[Tigertail]

Hi, I have your same problem's, but one of my dr's realized I was having anxiety attacks due to all my health issue's and he put me on anxiety medication and all my symptoms of that went away. I still have the same problems of having to always stay gluten free, I still have dermatitis herpetiformis and my many other ailments, but my heart has settled down and my itching all over with no rash has now gone good bye. Just a thought, but I hope you get to feeling better soon! I know what it feels like to feel like this day after day. It is very depressing. Good luck!

[cupp125]

Finally an update....though not the one I was hoping to offer.

I had the appointment(s) today, and I went in feeling very optimistic, but I can't say I'm one hundred percent relieved. Basically I got the same thing I've been getting for two years...."hmmm....odd, we'll run some tests." The good news is that I didn't have to explain what Celiac Disease was, they knew it well. Basically, they told me that my high bilirubin count was coupled with another high liver count that my other doctor had failed to mention to me. I've got some jaundice in the corners of my eyes, and they want to run a whole gamut of tests on my liver. The doctor also gave me Rx for Valium to help control the anxiety all of these health issues are causing. I'm skeptical about it, and nerbvous about taking meds with a potential liver issue. She's also testing my blood for nutritional deficiencies and some other auto-immune things, particularly Sjorgen's Syndrome because lately I have NO saliva in my mouth whatsoever, no appetite, fatigue, and I'm waking up with dry eyes. Then they sent me over to the Dermatologist who I struggled with. They don't seem to think it's DH due to the fact that my skin isn't showing much blistering. They said that they could run the test for it but the results would be questionable because they couldn't get a good sample without significant blistering, postules, etc. I got a little flustered and told them, "listen, I haven't slept for more than two hours in a night in months, I can't work, I can't go for a walk with my fiancee, I can't even read a book. I'm up all night, every night, in complete agony with this." Long story short, they want to wait for the blood results to see if the liver stuff could be causing the itching as well. Also, they're doing a test for some other skin thing...folliculitis I think it was. They gave me an Rx for some shampoo, some soap, and some lotion. As far as this portion of my visit goes, I'm pretty unhappy. I understand they're working hard to help me, but I was really, really hoping for some sort of relief to this itching. I'll try the Rx but I'm not feeling too confident. A derm. in the past told me it was folliculitis and I tried his remedy to absolutely no avail.

To sum it up...now I just wait and see. I'm waiting for the blood work to come back, and feeling pretty nervous about it. Mostly I just feel really down because there doesn't seem to be any end in near sight. I don't know how I'm going to go to work this week, how I'm going to handle another week of not sleeping....I'm feeling pretty sorry for myself, and I apologize.

The comment about the anti-anxiety med and how much that helped was very, very interesting. I'm going to try the Valium and hope it gives me some results. I can't tell you all how much I appreciate all of your input and advice. It's comforting to know it could be some vitamin deficiencies and that many of you have gone through similar stuff. I read all of your postings and have such mixed emotions. On the one hand, I feel great relief that so many people out there have shared my feelings and are willing to talk to me about it, and on the other hand, I feel so sad that so many of us have to go through this and keep turning up dead ends. I feel so horrible for my fiancee. I'm not the man she got involved with right now....I'm limited mostly to bed, can't eat, can't sleep, can barely hug her for more than ten seconds before the itching comes on. She's so patient, but it's hurting her.

I just really, really hope that A) they can help me, and this week. and That at some point in the very near future, all Celiacs will get better, more thorough, and more timely care. Thank you all, and I'll be sure to update as frequently as I get new info.

Fingers crossed,

Colby

[AliB]

I keep posting this everywhere to try and get the point across.

Over a century ago it was discovered that Celiacs are Carbohydrate intolerant - not just gluten although that was the 'diagnosis' the Medical hierarchy decided to run with. Whilst removing gluten certainly helps and some cope ok with just gluten removed, there are an awful lot of people out there who have removed gluten yet are still sick.

That alone shows that the problem is not just gluten alone. Those who cannot cope with carbohydrates also are extremely likely to have bacterial overgrowth which also can cause major problems within the body and which can only be controlled by restricting the foods they feed on - carbohydrates. If you have any external signs of fungus - even Athlete's foot, that will be a sure sign your body is struggling with it inside. It can externally manifest in many ways - Thrush (Candida), Tinea infestations, 'Jock itch', Athlete's foot, even dandruff!

Quite commonly, those who have to remove gluten from their diet often end up compensating by replacing it with a lot of high carb gluten-free foods, removing one problem but replacing it with another. Allergic responses are highly likely to be due to bacterial (fungal) overgrowth causing toxins to leak through the gut wall into the bloodstream. Intolerances are more likely due to insufficient digestion due to gut damage. High carbohydrate and sugar consumption just triggers and encourages it all.

Several have suggested an Elimination Diet. Maybe not a route you would wish to go down, but by far the quickest way to figure out which foods are causing you these problems. The very fact that you have to take anti-histamines for the itching shows quite clearly that it is an allergic type response. You may well not be getting 'glutened' but simply reacting to other foods that are affecting you.

If you need to take the A-H then you are obviously consuming something, or things that are affecting you - the only way to deal with it is to eat plain and simple. Meat, fish, vegetables, fruits, and water. No grains, starches, sugar (evil stuff!), dairy, anything processed.

There are thousands of us out there who have no choice but to eat like that all the time if we want to be well - but you get used to it, and the dividend of being well and feeling great far outweighs the deceptive pleasure of those insidiously poisonous high-carb, high-sugar foods that are doing us so much damage.

[cupp125]

OK....finally a bit more to update you on...nothing complete, but something. I got a call from the nurse at the center this morning and she told me that my blood tests had come back. Drumroll....high bilirubin (typical, Gilbert's), other liver stuff was fine, anti-nucleii (other auto-immune stuff tests??) were fine, but my B12 and Vitamin A were very low. They called in a prescrip. for Vitamin A, and I have to go in tomorrow for a B12 shot. They want me to come in five days in a row for the shot, then once a week for four weeks, then once a month indefinitely. Could all of this be deficiencies? I know a lot of you mentioned that, and I've got my fingers crossed that that's what it is. I've been taking sublingual B12 for three days with moderate-at-best results. The nurse said that these deficiencies could be causing my itching, severe dry mouth, and dizziness, among other things. I did a lot of looking around online and couldn't turn up any associations between B12 and A and itching or dry mouth...but if they think it'll work, I'm all for it. I will do/try anything! I missed work again today, and I think my boss has had just about enough of it.

I'm having a hard time believing that in two years of seeing doctors, nobody ever thought to test a celiac for vitamin issues. Is that common? If so, we have got to do something about informing the medical profession. This is unreal.

Anyway, I'll keep you posted with how the shots make me feel. Keep your fingers crossed! Also, I've been doing exactly what many of you said and stripping my diet down to next to nothing to slowly test foods. Right now I'm just eating fruit and some meat and vegetables. I'm going to try to get in to see an allergist ASAP. Has that been helpful to anyone else?

Again, thank you. Honestly. Thank you.

[ravenwoodglass]

I'm going to try to get in to see an allergist ASAP. Has that been helpful to anyone else?

It was an allergist who finally was able to diagnose me after years of suffering and multiple false negatives on blood work. Do be sure to ask when making the appointment if the doctor deals with food intolerances. Many only do true allergies but some will guide you with elimination diets to pinpoint intolerances. Mine did an allergy scratch test, I was allergic to everything but beech trees. He then formulated an starting point for the elimination diet (I was allowed 5 foods) and I would call once a week with the results of the single ingredient food I had added that week. He stated after I added wheat back in with horrible results that he suspected celiac when I came back as allergic to everything, he explained my immune system was in hyperdrive. With so much gluten coursing through my bloodstream my immune system didn't know what to attack so it attacked everything including my own organs. For me the allergist saved my life. I will always be thankful to him.