Mis-diagnosed Or Incomplete Diagnoses?

[blistovmhz]

Ok, I'm not sure I have celiac disease. If I do, I don't believe it explains all my recent symptoms. I'll give a quick history.

I've been extremely active and healthy my entire life. I drank a bit when I was a kid, but haven't touched anything bad for me other than cigarettes in 10 years. I was a pretty serious smoker for many years. I have since quit.

3 years ago.

I started experiencing blurred vision, and general, but very rapid onset of fatigue. I was working an office job, but exercise regularly.

I was 6'5", 165lbs, ran/longboarded almost everywhere I went, but smoked cigarettes, otherwise very healthy. A few months after this started, my throat started feeling constricted from time to time. It would come and go. Felt like the proverbial "frog in throat" sensation.

2 years ago.

Constriction in throat is getting serious enough to affect my breathing. When I run, I am constantly fighting to get enough air flow to my lungs. Lungs feel great otherwise. I started to worry about throat cancer, so I took the issue to a doctor. Couldn't find a family doc accepting patients, so went to a walk in clinic. Doctor said I was fine, and not to worry about my inability to breath. I got a second opinion. And a third, right through to a seventh, before finding a doctor who showed some concern over my symptoms. He sent me to a lab to be tested mainly for STD's. Everything came back clean. He then gave up, and said I must be fine. I lived with it, hoping he was correct.

10 months ago (August 2009)

Constriction is much worse, and comes more often. Its bad enough that I occasionally start blacking out when exerting myself. I go to a few more doctors, all of whom say this is normal (I'm in Alberta in case anyone wonders). I finally start doing my own research. My symptoms match Hashimotos Thyroiditius (Autoimmune hypothyroidism, where the immune system attacks your thyroid gland until it is dead to death). I asked a doctor about his, he said "can't be Hash-what..", and tried to send me away. I decided to take matters into my own hands, and faked a bunch of symptoms of clamidya as well, so that he'd give me a diagnostics requisition form (Labs here won't let you get tested without a req from a doc). I took the form home, forged it, and added tests to confirm or rule out Hashimotos. Tests came back positive. I took the results to a doctor, and was prescribed Synthroid (thyroid T3 replacement... omits vital T4...). After being on the thyroid replacement meds for a few months, I started to feel much better, and symptoms mostly resolved, though not entirely. I had one "attack" of some sort, where I just started panicking, feeling like I was going to die, heart palpitations like mad, went to ER, couldn't remember my name to check myself in, but by the time I got to see a doc, I felt normal again. He said there was nothing to worry about.

I've been working out more, and eating, and have gained some weight. I'm up to 185lbs now. Aside from these symptoms, I am healthy.

I've noticed I have to urinate more frequently than seems normal.

Feb 28, 2009.

Woke up the first day of vacation with an eye infection of some sort. This is the first time I've ever had a noticeable bacterial infection, but my immune system is pretty good, so I figured it'd clear. I went to Vancouver for the week, the infection got worse.

March 3, 2009

When I returned home, I went to a doctor who prescribed me Vigamox eye drops (first anti-biotic I've ever taken knowingly). I took the drops, and a day later, the infection was subsiding. Three days later, all visible signs of infection had disappeared, by my gut didn't feel quite right. A week later, I hadn't had a bowel movement in 3 days, and was starting to get worried. I went to another doctor, thinking I had some intestinal blockage. He said there was nothing wrong, and that my lack of a bowel movement was acceptable. Tried again with another doctor, who told me to go to ER if something felt like it popped.

I went home and started doing some research. By this time, I hadn't eaten in 3 days, because I couldn't physically force food down, as I was too full.

All of a sudden, I have explosive diarrhoea, for about an hour, and then I am able to eat. The cycle starts again, and my gut gets distended several inches, completely constipated for days, then explosive diarrhoea. I brought this new info to a doctor, who again, said nothing was wrong, but I managed to convince him to give me some diagnostic requisitions. I did some more research, and Celiac disease started to make sense. I tested for anti-gladulin antibody (or whatever antibody mostly confirms celiac disease), and results came back positive, with a little side note attached reading "probable celiac disease, follow up with biopsy".

I haven't yet found a doctor who will refer me for a biopsy, but I went gluten-free to test anyhow. Symptoms got much better after going gluten-free, though I'm sure I've had a few slip ups. Overall though, my health has been much better.

Since the original eye infection, I've had 4 more serious eye infections. Each time I've got to do a swab and culture, the lab has found nothing. I'm not urinating at work, every two hours at least. Usually 5 - 6 times during the work day.

May 28, 2009

Drove to BC to visit my girlfriend tree planting, and then my daughter in Prince George. Stayed in camp for two days. Brought most of my own food, but the camp cook was knowledgeable about celiac disease and managed to cater a few gluten-free meals to me. I'm fairly confident I trust her cooking. Sunday morning I leave camp after eating some hash browns, bacon, yogurt, and granola (yogurt and granola i brought). I get to PG an hour later, and go see my daughter. Three hours later, I'm immediately hit with massive nausea, dizziness, chills, and explosive diarrhea (7 trips to the toilet in an hour). I felt like I was going to die. Much worse than I've ever felt in my life, and the onset took about 10 minutes from null, to dying. It was bad enough that I had to lie down, and was considering calling and ambulance, as I didn't want to pass out while taking care of my daughter. I decided to give it another 10 minutes, with my thumb on my phone ready to dial 911. Then, symptoms started clearing, and 10 minutes later, I felt completely normal. I decided to start driving home just in case I hadn't seen the last of it, as I didn't want to be trapped in PG for a week.

The 8 hour drive went fine. I ate when I got home, and still felt fine.

May 28 through Jun 16, 2009

My routine has become routine. I wake up feeling constipated, I bike to work, usually have a cup of coffee, but not always. I ALWAYS have diarrhea, 2 or 3 times within an hour or so of arriving to work. By lunch I feel like I'm starving, and a bit nauseous. I've been extremely careful to stay gluten-free. Cooking all my own food when I'm home, and I only ever get food from an organic grocer (planet organic) who's staff are all very knowledgeable about Celiac disease, and know their ingredients very well. After lunch I feel fine, but by supper time, I'm not usually hungry, despite a lot of exercise and physical activity. I eat supper anyway, and feel bloated and terrible. There is now a usually slight, but sometimes moderate pain, in my lower right abdomen, whenever my abdomen is distended. When I feel stuff start moving again in my intestines, the pressure/pain in my lower right abdomen decreases. I've also noticed in the past two weeks, some rather severe pain in my knees when I stand up/pedal/run. It feels like arthritis from how I've heard it described. Knee joints feel inflamed. Sometimes going from a sitting position to standing is almost unbearable, and I can deal with a lot of pain. I also notice that my knees are much less flexible than they normally are (I do yoga daily as well).

Eye infections have subsided mostly, but eyes constantly feel like they're about to be infected, and always slightly red in the corners.

Jun 15, 2009.

Woke up this morning with another eye infection. Got Vigamox prescribed, infection subsiding by June 16.

Jun 17, 2009.

I woke up at 0230 this morning to murderous pain my my mid left abdomen. Felt like something popped. I was on my side, so I flipped back onto my back. Immediately, my entire gastrointestinal tract started growling and moving, but I did not have to go to the bathroom and felt chills again briefly. I sat up for an hour, worrying that something had exploded, but all seemed well, other than some residual pain my my mid left abdomen. Almost no distension in my abdomen, all seemed normal.

Noonish.

Picked up the same two food items I've been eating all week from Planet O. A sweet potato salad, and six bean salad. Both are supposedly gluten free. Ingredients listed are precise, and I've eaten both, many times without ill effect. I took a couple bites of the six bean salad, and within' a minute, I started feeling violently ill. My head started spinning, my arms/fingers felt like they were no longer mine, dizzy, nauseous, chills, and general feeling of impending doom.

Back to explosive diarrhea, and 10 minutes later, I feel fine.

Sorry for the long history, but I don't want to leave out anything potentially important, and not knowing whats important, I must put everything.

Also, just sorta weird, I'd never heard of Celiac disease until six months ago. When I was diagnosed about 4 months ago, I'd never met anyone who had it, but I recognized that one of my room mates suffers from all the same symptoms, and has so for years. Her doctors just called it IBS and left it at that. I suggested she go gluten-free as well, and since, she has felt much better, but still occasionally suffers the same symptoms as I do. Since my diagnosis, I know about 15 people in my area personally, who have been diagnosed as well, all within 6 months of each other, and all of whom had taken some form of anti-biotics (mostly moxifloxicin, which I've taken) during that time. Weird?

To summarize my current symptoms:

Abdominal distension.

Alternating constipation/diarrhea.

Foggy brain (very general, comes and goes, but onset is slow).

Nervousness, shaking, feeling of impending doom, nausea, dizziness, (rapid onset usually after eating a few bites of food, followed by Diarrhoea, followed by relief of symptoms).

Frequent urination

Chills

Loss of balance (general. I'm noticing I wipe out on my bike a lot more often than normal. I don't feel I'm in control of my body.)

Knee pain (general, severe, nearly debilitating at this point).

Chronic eye infection (nothing bacterial shows up on culture according to lab, but anti-biotcs clear infection ... sorta)

Can anyone tell me, are my recent symptoms fitting with Celiac, or should I go steal and forge more diagnostic requisitions?

P.S. Medical science should be open source. I could have diagnosed my two known issues much faster, had I just had access to the information.

[The Fluffy Assassin]

Ok, I'm not sure I have celiac disease. If I do, I don't believe it explains all my recent symptoms. I'll give a quick history.

I've been extremely active and healthy my entire life. I drank a bit when I was a kid, but haven't touched anything bad for me other than cigarettes in 10 years. I was a pretty serious smoker for many years. I have since quit.

Hey, I was trying to look up something else and found this discussion of food allergies at the Mayo Clinic's site: Open Original Shared Link

A lot of that stuff sounds just like what you were describing. You should consider visiting an allergist double quick.

Medicine is pretty open source in the Internet age; it's just tricky telling the useful information from the BS. Mayo Clinic Open Original Shared Link and the Merck Manual Open Original Shared Link are pretty reliable and also machine searchable.

[Foxfire62]

Ok, I'm not sure I have celiac disease. If I do, I don't believe it explains all my recent symptoms. I'll give a quick history.

I've been extremely active and healthy my entire life. I drank a bit when I was a kid, but haven't touched anything bad for me other than cigarettes in 10 years. I was a pretty serious smoker for many years. I have since quit.

3 years ago.

I started experiencing blurred vision, and general, but very rapid onset of fatigue. I was working an office job, but exercise regularly.

I was 6'5", 165lbs, ran/longboarded almost everywhere I went, but smoked cigarettes, otherwise very healthy. A few months after this started, my throat started feeling constricted from time to time. It would come and go. Felt like the proverbial "frog in throat" sensation.

2 years ago.

Constriction in throat is getting serious enough to affect my breathing. When I run, I am constantly fighting to get enough air flow to my lungs. Lungs feel great otherwise. I started to worry about throat cancer, so I took the issue to a doctor. Couldn't find a family doc accepting patients, so went to a walk in clinic. Doctor said I was fine, and not to worry about my inability to breath. I got a second opinion. And a third, right through to a seventh, before finding a doctor who showed some concern over my symptoms. He sent me to a lab to be tested mainly for STD's. Everything came back clean. He then gave up, and said I must be fine. I lived with it, hoping he was correct.

10 months ago (August 2009)

Constriction is much worse, and comes more often. Its bad enough that I occasionally start blacking out when exerting myself. I go to a few more doctors, all of whom say this is normal (I'm in Alberta in case anyone wonders). I finally start doing my own research. My symptoms match Hashimotos Thyroiditius (Autoimmune hypothyroidism, where the immune system attacks your thyroid gland until it is dead to death). I asked a doctor about his, he said "can't be Hash-what..", and tried to send me away. I decided to take matters into my own hands, and faked a bunch of symptoms of clamidya as well, so that he'd give me a diagnostics requisition form (Labs here won't let you get tested without a req from a doc). I took the form home, forged it, and added tests to confirm or rule out Hashimotos. Tests came back positive. I took the results to a doctor, and was prescribed Synthroid (thyroid T3 replacement... omits vital T4...). After being on the thyroid replacement meds for a few months, I started to feel much better, and symptoms mostly resolved, though not entirely. I had one "attack" of some sort, where I just started panicking, feeling like I was going to die, heart palpitations like mad, went to ER, couldn't remember my name to check myself in, but by the time I got to see a doc, I felt normal again. He said there was nothing to worry about.

I've been working out more, and eating, and have gained some weight. I'm up to 185lbs now. Aside from these symptoms, I am healthy.

I've noticed I have to urinate more frequently than seems normal.

Feb 28, 2009.

Woke up the first day of vacation with an eye infection of some sort. This is the first time I've ever had a noticeable bacterial infection, but my immune system is pretty good, so I figured it'd clear. I went to Vancouver for the week, the infection got worse.

March 3, 2009

When I returned home, I went to a doctor who prescribed me Vigamox eye drops (first anti-biotic I've ever taken knowingly). I took the drops, and a day later, the infection was subsiding. Three days later, all visible signs of infection had disappeared, by my gut didn't feel quite right. A week later, I hadn't had a bowel movement in 3 days, and was starting to get worried. I went to another doctor, thinking I had some intestinal blockage. He said there was nothing wrong, and that my lack of a bowel movement was acceptable. Tried again with another doctor, who told me to go to ER if something felt like it popped.

I went home and started doing some research. By this time, I hadn't eaten in 3 days, because I couldn't physically force food down, as I was too full.

All of a sudden, I have explosive diarrhoea, for about an hour, and then I am able to eat. The cycle starts again, and my gut gets distended several inches, completely constipated for days, then explosive diarrhoea. I brought this new info to a doctor, who again, said nothing was wrong, but I managed to convince him to give me some diagnostic requisitions. I did some more research, and Celiac disease started to make sense. I tested for anti-gladulin antibody (or whatever antibody mostly confirms celiac disease), and results came back positive, with a little side note attached reading "probable celiac disease, follow up with biopsy".

I haven't yet found a doctor who will refer me for a biopsy, but I went gluten-free to test anyhow. Symptoms got much better after going gluten-free, though I'm sure I've had a few slip ups. Overall though, my health has been much better.

Since the original eye infection, I've had 4 more serious eye infections. Each time I've got to do a swab and culture, the lab has found nothing. I'm not urinating at work, every two hours at least. Usually 5 - 6 times during the work day.

May 28, 2009

Drove to BC to visit my girlfriend tree planting, and then my daughter in Prince George. Stayed in camp for two days. Brought most of my own food, but the camp cook was knowledgeable about celiac disease and managed to cater a few gluten-free meals to me. I'm fairly confident I trust her cooking. Sunday morning I leave camp after eating some hash browns, bacon, yogurt, and granola (yogurt and granola i brought). I get to PG an hour later, and go see my daughter. Three hours later, I'm immediately hit with massive nausea, dizziness, chills, and explosive diarrhea (7 trips to the toilet in an hour). I felt like I was going to die. Much worse than I've ever felt in my life, and the onset took about 10 minutes from null, to dying. It was bad enough that I had to lie down, and was considering calling and ambulance, as I didn't want to pass out while taking care of my daughter. I decided to give it another 10 minutes, with my thumb on my phone ready to dial 911. Then, symptoms started clearing, and 10 minutes later, I felt completely normal. I decided to start driving home just in case I hadn't seen the last of it, as I didn't want to be trapped in PG for a week.

The 8 hour drive went fine. I ate when I got home, and still felt fine.

May 28 through Jun 16, 2009

My routine has become routine. I wake up feeling constipated, I bike to work, usually have a cup of coffee, but not always. I ALWAYS have diarrhea, 2 or 3 times within an hour or so of arriving to work. By lunch I feel like I'm starving, and a bit nauseous. I've been extremely careful to stay gluten-free. Cooking all my own food when I'm home, and I only ever get food from an organic grocer (planet organic) who's staff are all very knowledgeable about Celiac disease, and know their ingredients very well. After lunch I feel fine, but by supper time, I'm not usually hungry, despite a lot of exercise and physical activity. I eat supper anyway, and feel bloated and terrible. There is now a usually slight, but sometimes moderate pain, in my lower right abdomen, whenever my abdomen is distended. When I feel stuff start moving again in my intestines, the pressure/pain in my lower right abdomen decreases. I've also noticed in the past two weeks, some rather severe pain in my knees when I stand up/pedal/run. It feels like arthritis from how I've heard it described. Knee joints feel inflamed. Sometimes going from a sitting position to standing is almost unbearable, and I can deal with a lot of pain. I also notice that my knees are much less flexible than they normally are (I do yoga daily as well).

Eye infections have subsided mostly, but eyes constantly feel like they're about to be infected, and always slightly red in the corners.

Jun 15, 2009.

Woke up this morning with another eye infection. Got Vigamox prescribed, infection subsiding by June 16.

Jun 17, 2009.

I woke up at 0230 this morning to murderous pain my my mid left abdomen. Felt like something popped. I was on my side, so I flipped back onto my back. Immediately, my entire gastrointestinal tract started growling and moving, but I did not have to go to the bathroom and felt chills again briefly. I sat up for an hour, worrying that something had exploded, but all seemed well, other than some residual pain my my mid left abdomen. Almost no distension in my abdomen, all seemed normal.

Noonish.

Picked up the same two food items I've been eating all week from Planet O. A sweet potato salad, and six bean salad. Both are supposedly gluten free. Ingredients listed are precise, and I've eaten both, many times without ill effect. I took a couple bites of the six bean salad, and within' a minute, I started feeling violently ill. My head started spinning, my arms/fingers felt like they were no longer mine, dizzy, nauseous, chills, and general feeling of impending doom.

Back to explosive diarrhea, and 10 minutes later, I feel fine.

Sorry for the long history, but I don't want to leave out anything potentially important, and not knowing whats important, I must put everything.

Also, just sorta weird, I'd never heard of Celiac disease until six months ago. When I was diagnosed about 4 months ago, I'd never met anyone who had it, but I recognized that one of my room mates suffers from all the same symptoms, and has so for years. Her doctors just called it IBS and left it at that. I suggested she go gluten-free as well, and since, she has felt much better, but still occasionally suffers the same symptoms as I do. Since my diagnosis, I know about 15 people in my area personally, who have been diagnosed as well, all within 6 months of each other, and all of whom had taken some form of anti-biotics (mostly moxifloxicin, which I've taken) during that time. Weird?

To summarize my current symptoms:

Abdominal distension.

Alternating constipation/diarrhea.

Foggy brain (very general, comes and goes, but onset is slow).

Nervousness, shaking, feeling of impending doom, nausea, dizziness, (rapid onset usually after eating a few bites of food, followed by Diarrhoea, followed by relief of symptoms).

Frequent urination

Chills

Loss of balance (general. I'm noticing I wipe out on my bike a lot more often than normal. I don't feel I'm in control of my body.)

Knee pain (general, severe, nearly debilitating at this point).

Chronic eye infection (nothing bacterial shows up on culture according to lab, but anti-biotcs clear infection ... sorta)

Can anyone tell me, are my recent symptoms fitting with Celiac, or should I go steal and forge more diagnostic requisitions?

P.S. Medical science should be open source. I could have diagnosed my two known issues much faster, had I just had access to the information.

Wow! I went through a lot too, recently, so I feel for you, especially when you're thinking you might be dying!

I am suffering from constipation. Used to, my bowels moved on a regular basis. However, since becoming a celiac, they no longer do. Since celiac disease can suddenly be brought on by surgery, injury or stress, I have a feeling mine was brought on by hernia surgery. I used to be healthy as a horse too...rarely sick!

I'm glad you got your throat thing fixed. I was going to recommend thyroid as well if there was no cancerous lump. I was also going to recommend asthma testing. But it seems like you've recovered from that?

I'm not sure about the eye infections. The problems with your body being so out of whack now is getting it back on track. It's very difficult, I know. I am currently on STD (short-term disability) trying to get better now as well.

As for your problems with your intestines, I could relate a lot better. In April of this year, after eating ground beef, gluten-free pasta and gluten-free chips, I felt extremely full and took Gaviscon. The next morning, I woke up to a sudden onset of sweats and feeling as if my chest were compressed. I later got the chills, and I later got the runs. The days following were ok...until 2 weeks later when basically the same thing happened. Sudden onset of warmth followed by chills.

Chills can signify a few things. It can signify something going on with your intestines, but it can also signify low blood pressure. Please be sure you check that as well, especially if light-headedness accompanies it.

I found out I was backed up (constipated). The thing is, I think I'm so backed up that I might just want to do a cleansing. (Will discuss this with my doctor tomorrow a.m.) When I get backed up, drinking water (which will help the intestines) almost becomes toxic to me, and I feel as if I might faint and my heart will stop pumping. All these problems have caused me to become anxious (which might also be some of your problem).

But let's discuss your positive blood test for celiac disease. The thing you should have done was have your biopsy completed immediately after your blood test before going on a gluten-free diet. The only 100% dx of celiac disease is the biopsy. There are other conditions where the villi are blunted and it looks remarkably like celiac disease. So, really, going to a GI that specializes in celiac disease would have been the best thing. But in order to be diagnosed 100%, you need a biopsy, and you need to be on a gluten diet for at least a couple of weeks!

Anyway, whether or not you opt to be 100% diagnosed with a biopsy, I would recommend you stay away from all processed foods...entirely! Also, as your intestines heal, you may find yourself becoming temporarily intolerant to things you used to be able to tolerate. For me right now, I'm finding out eating meat or fat found in protein is causing me constipation and back-up. But because I've lost so much weight, my nerve endings are devoid of fat. My nutritionist wanted me to build that up by taking an anti-depressant (SSRI, I think) that is supposed to help build up the fat around the nerves. I wasn't able to tolerate it. The more natural course of developing this is via dairy. Also, I've become hypoglycemic, which is why the nutrtionist (who also has celiac disease, btw) kept pushing the protein. But what if your intestines are having a difficult time processing protein? What do you do? (My question to my nutritionist today.)

My nutritionist said I still need to eat protein. She recommended, however, that I eat egg whites as opposed to yolks or only once-in-awhile introduce a yolk. She also recommended when I buy meat, stay away from ground beef for now. Eat only ground turkey, chicken and fish meat. She also recommended that since turkey and chicken can have hormones and other things injected into them in pre-packaged foods (even if they are plain and supposedly gluten-free), go to a butcher and buy fresh cuts of these meats, and eat turkey/chicken without the skin.

Nuts are a great source of protein, but you have to be careful with that too, if you're having the same problem I am having. She recommended raw almonds, because they have the least amount of fat and are more easily digested.

So, you need to start looking at the food you eat. Even if it's gluten-free, your intestines might not yet be ready for them if you're in the healing process. Eat the freshest vegetables, fruits, and salads. Do not eat any processed meals, even if they say gluten-free on them...at least not right away. Eat like they used to cook before all the TV dinners and fast food came on the market.

If you're having problems processing the fat like me, you might want to reduce the fat in your protein or reduce the protein until your intestines can tolerate them a little better. Know that most celiacs become intolerant to lactose (could be a problem of yours). Also, excessive amounts of calcium can cause constipation.

I don't know what else to tell you at this time. But you are right that you have to be your own advocate and almost your own doctor. But look at it this way...you're learning so much! I know I have!

I wish you and me the best road to recover. I was dx on 8-8-08, and I'm still recovering. The villi in my intestines were severely blunted during the first biopsy. The results of my second show mild blunting, so I'm half-way there. For adults with celiac disease, depending on your age and health, it can take 1-2 years of recovery time.

Another thing...did you know gluten can hide in make-up, shampoos, hairsprays, soaps and conditioners? Might want to check those too.

Good luck!

[blistovmhz]

Thanks Foxfire,

Your story does sound similar.

I ended up in ER last night. By the time I got through triage, I couldn't remember my name, birthday, SIN, address, or how to use my phone to look up the information. 9 hours later I finally saw a doctor. He did some chest/abdominal x-rays, and checked my blood for electrolytes and white blood cell count. Everything came back normal, but thats also 9 hours after the onset of the attack.

I got home about 3am, slept till 10am, went to work, ate some carrots, peas, a banana, and some yoghurt, and once again, I start getting cold, light headed, dizzy, and feeling of general impending doom.

Now, this is the first time I've had more than 2 bites since 2 days ago, so I wonder if its possible that my digestive system just hoarded all available blood to start processing food? It would be nice to know, if these symptoms are all related to celiac, the mechanics of the symptoms. Thus far, no one, including the 20 some doctors I've gone through thus far, can give me any theory as to why I'm feeling like this.

FYI, I always eat very healthy. I eat mostly organically grown foods, I cook almost everything myself, and I almost never (certainly not in the past few months) eat anything thats been processed.

I've been very healthy my entire life. I've been sick with the cold a few times, flu 3 or 4 times, and had a mild throat infection 7 years ago. I'd never taken antibiotics until February of this year, and those were topical.

Since Feb, I've had chronic eye infections that we can't get a culture on, my brain is becoming less useful, I have trouble concentrating, I wipe out on my bike a lot more because I'm not in control of my body, my knees are barely able to move me from sitting to standing (but get better once i'm moving), several other joints hurt a lot, I'm only able to eat about 1/3 what I should, and I have these bouts of "impending doom" ...

If this is all celiac, I'd like to figure out why all these things happen. I'm sure there can be a logical explanation, but thus far, I haven't heard it.

EDIT:

P.S. I ate an apple at lunch today (organic, same type, from the same vendor, from the same farm, as I've eaten every day for several months), and my mouth broke out in hives. Grrr.

[clock]

I really feel for you and hope the best for your speedy recovery. I know all of this sucks, especially the judgment from others. It is unfortunate how little most doctors really retain when they

[blistovmhz]

That makes a lot of sense, and I put no faith whatsoever into doctors or nutritionists, as I myself, have spent a lot of years with "experts" from various fields, and I've found far too many of them simply memorized the right answers through school, never understood the theory behind what they were learning, and retained nothing. Worse, in my field (computers), as well as medicine, technology has progressed extremely rapidly in the past 5-10 years, so a doctor who finished school 2 years ago, is long out of date, if they haven't kept up

Diet makes sense, though I'm not sure what I'm going to eat. I live on (organic) fruits, vegetables, rice (and rice products), juice, yoghurt/whey and chicken (perhaps twice a week). I always feel I'm low on carbs, and I'm constantly fighting to have enough energy to work out every day.

I've toned down the work out regiment in the last couple weeks, but mainly because I don't have the energy to to any muscle building, and even if I did, I can't find a solid source of protein for muscle development.

So, the water, meat, vegetables, seeds and nuts, fruit, and multi-vitamins I've already got down.

None of these really turn into a meal ...

I did a bit of research quickly to confirm your theories, and it checks out as well as .. anything can check out on the internet , and am starting immediately. We'll see what happens, but I suspect I'll collapse from lack of carbs.

[Korwyn]

Diet makes sense, though I'm not sure what I'm going to eat. I live on (organic) fruits, vegetables, rice (and rice products), juice, yoghurt/whey and chicken (perhaps twice a week). I always feel I'm low on carbs, and I'm constantly fighting to have enough energy to work out every day.

I've toned down the work out regiment in the last couple weeks, but mainly because I don't have the energy to to any muscle building, and even if I did, I can't find a solid source of protein for muscle development.

So, the water, meat, vegetables, seeds and nuts, fruit, and multi-vitamins I've already got down.

None of these really turn into a meal ...

One of the problems with this type of diet, which I am also on, is getting enough animal fat. Any type of cooking oil other than clarified butter (which is non-dairy as it no longer contains the Casein protein) or animal fat (pork, beef, poultry, fish, etc) breaks down into trans-saturated fat when heated. You need to make sure that you are getting enough fat in the diet. Your body can convert natural (animal) fat into energy very easily.

Also don't eat fruit at the same time as meat or eggs as the enzymes required for breakdown of the sugars can interfere with or slow the digestion of the meat protein.

But..more importantly, I have had a similar problem. I went gluten-free and started to improve, than began to develop other symptoms, which were masked by my gluten-free symptoms originally. Turns out I'm reacting to Casein (protein in Cow's milk), and soy. So my diet consists at the moment of the following:

Lots of meat, locally grown grass and occasionally grain fed (local butcher).

Locally grown organic fresh eggs

Fresh or thawed from frozen veggies (never cooked) and fruit.

A lot of your symptoms have possible base in other food intolerance, but some of them sound like they are nutrient deficiencies. Try making a shake with following:

1/2 to 1 banana (peeled)

1/2 small apple, seeds and all.

1/4 to 1/2 some other fruit (mango, kiwi, guava, etc). Don't include the kiwi skin, but do include the mango/guava skin as they have lots of trace minerals.

Lots of Spinach

Couple full leaves of Kale (Cale)

1 Tbsp of Kelp powder

1 Tbsp of Whey protein

Rice milk and/or Almond milk

If you can handle the slight change in taste, throw in a liquid gel-cap of omega-3 fish oil.

Blend to a very smooth drinkable state adding more rice and/or almond milk as needed to get the consistency you like.

Vary this with all sorts of different fruits and veggies. Mustard greens and collard greens add different tastes and textures. Also throwing in a raw egg per serving gives a nice creamy texture and you don't even taste the egg. Iceberg lettuce and celery are nutritionally useless. You'll get plenty of fiber from the veggies and more starches and carps than you realize. You can cram a LOT of veggies (a huge plate full of them) into one of these shakes.

[clock]

I know how things are on the internet. But I suppose that what matters to me is what actually what checks out with actual research on PubMed through long-term, controlled studies - not the dietary guidelines that some corporation sponsored or a theory someone cooks up.

The best way to think of meals is to reframe the way you think of meals. In our culture, meals are typically meat, a vegetable, and a carby side. Instead, try to escape our cultural consideration of what a "meal" is - and change it to two items: a source of protein, and a vegetable (or fruit.) Ultimately, that is what humans ate in the beginning of history, as agriculture and starch-centered meals was a later development. A lot of meals that are served over rice and pasta can stay the same - just get rid of what's under it. Stir fry, for example, can be eaten without the rice, and so forth.

Don't forget olive oil.

[mushroom]

Stir fry, for example, can be eaten without the rice, and so forth.

Also, you don't need a tortilla, flour or corn, for tacos. We have tacoless tacos--beans (DH only); meat (turkey or beef) cheese, tomatoes, lettuce plus whatever extras float your boat--avocado/guacamole, sour cream, salsa....

[gfb1]

wow. i don't know where to start. sounds like you had a really tough time.

i also understand the desire for 'open source' medicine .... but, there is a reason that it takes years to be a doctor -- and its just not the classroom answers.

surfing the net is no substitute for training and experience.

a few notes in no particular order... just stream of consciousness.

aside from knowing that you have confirmed Hashimoto's it is very difficult to evaluate all your symptomology.

you CANNOT have a decent diagnosis by matching lists of symptoms.

if you are having problems with blood sugar (whether hypo or hyperglycemia -- you have a variety of symptoms matching both/either condition), then..

get tested.

a glucose tolerance test is a quick way to find out.

you say that you tested positive for anti-gliadin antibodies. if this is the case; the doctors' note was reasonable. "probable celiac disease, follow up with biopsy"

you then went gluten-free, felt better.... then something happened.

what are you buying at the grocery store (even an organic grocery).

even organic grocers make mistakes with celiac's; e.g. we have a local store recommending barley -- when it is absolutely NOT acceptable.

and, yes, even organic grocers can sell gluten-contaminated products -- commonly, oats from small-run producers are contaminated, since they cannot afford a separate facility to process oats and other gluten-containing grains. and you are eating 'granola'.

p.s., what was in the granola??

elimination diets are a great idea.

but, start with rice only.

leave out dairy (like yogurt), meats (esp poultry), eggs and esp. fish. these are all wonderful sources of antigens....

also, as far as veggies go... forget the nightshades for a while, tomatoes are wonderfully allergenic.

and definitely no seeds or nuts. aside from allergenicity, they are brutal to digest and can physically scratch/irritate the digestive tract...

hang in there;

(almost forgot; for the constipation, try a tablespoon or two of milk of magnesia each day ... maybe 1 TBSP with breakfast then dinner. it might be a simple/non-pharma solution)

[blistovmhz]

if you are having problems with blood sugar (whether hypo or hyperglycemia -- you have a variety of symptoms matching both/either condition), then..

get tested.

a glucose tolerance test is a quick way to find out.

you say that you tested positive for anti-gliadin antibodies. if this is the case; the doctors' note was reasonable. "probable celiac disease, follow up with biopsy"

I went and bought a blood sugar monitor last night. I've been between 4.8 and 7.7 before and after meals, and while symptomatic or asymptomatic. Next time I have another full blown attack, I'll check again, but I suspect hypo/hyperglycymia and/or diabetes, are both out now.

As for the anti-gliadin and anti-thyroid antibodies, there was no doctors note. I had to steal diagnostic requisitions and write them myself. On a hunch, I'd checked off TSH, t3/t4, and anti-thyroid antibodies on a requisition, took it in and got tested myself. The doctor who received the results, did not even mention the antibodies. I did the same thing to confirm the celiac as well, as every doctor I've spoken to, has said there's nothing wrong with randomly passing out.

On another note though, I found a research paper indicating a direct connection between celiac disease (symptomatic or asymptomatic) and increased production of anti-thyroid antibodies. The study found that 170 confirmed celiac patients, who had confirmed Hashimotos autoimmune hypothyroidism, who were all went gluten free, saw a decrease in production of anti-thyroid antibodies. In most cases, a decrease to nearly normal, non-hashimotos levels. In essence, their auto-immune hypothyroidism disappeared entirely.

I'm taking 88mcg of Synthroid, which, in a healthy individual, with no existing auto-immune thyroid condition, and with normal thyroid output, is enough to approach a clinical overdose of the drug. My symptoms match both hypo and hyper glycemia, but with the addition of increased/frequent bowel activity. Synthroid overdose covers all the symptoms.

I started thinking about this, and realized that since I've been positive to be gluten free for the past 3-4 weeks, I've also noticed that in the past 2-3 weeks, the left side of my thyroid, for the first time in 2 years, has not been inflamed, and the right side inflammation has decreased substantially.

Anyone have research/science/experience to confirm this hypothesis?

P.S. The first time I took Synthroid, I had the same symptoms I'm experiencing now, and I had to go to ER for them, and the doctors found nothing, but did not check t3/t4 levels....

[curiousgeorge]

Synthroid is a crappy drug. I am FAR smaller than you but was taking 200. 88mcg is hardly close to overdose. Even in 5' tall 100 pound mother was taking 150 mcg.

Do yourself a favour, and get a doc that will give you desicated thyroid hormone. Syncrap isn't even guaranteed to be gluten free.

[blistovmhz]

Synthroid is a crappy drug. I am FAR smaller than you but was taking 200. 88mcg is hardly close to overdose. Even in 5' tall 100 pound mother was taking 150 mcg.

Do yourself a favour, and get a doc that will give you desicated thyroid hormone. Syncrap isn't even guaranteed to be gluten free.

What about someone with healthy thyroid output though, taking 88mcg. According to the makers of Synthroid, it is a very narrow band drug, and being even 40 mcg over optimal, would produce symptoms of overdose.

IE: what would happen to someone who is euthroid, who takes 88mcg?

[clock]

I should probably mention again that you need to give your body time to adjust to the lack of carbs at first, then you will feel better. You need to make sure, however, that you are getting enough calories - oil, nuts and seeds, and foods like avocado may be your best bets. People who go on low carbohydrate diets often feel badly because they don't eat enough - but if you do, after an initial adjustment period, you will see almost a complete erradication of hypoglycemic episodes.

And remember that people with gluten intolerance tend to also be lactose intolerant, so this diet will probably help you.

[blistovmhz]

I should probably mention again that you need to give your body time to adjust to the lack of carbs at first, then you will feel better. You need to make sure, however, that you are getting enough calories - oil, nuts and seeds, and foods like avocado may be your best bets. People who go on low carbohydrate diets often feel badly because they don't eat enough - but if you do, after an initial adjustment period, you will see almost a complete erradication of hypoglycemic episodes.

And remember that people with gluten intolerance tend to also be lactose intolerant, so this diet will probably help you.

I've confirmed my blood glucose levels are dead normal, before and after eating. Range has stayed between 4.4 and 7.8 for the past 2 days, with an average of 5.125. I have checked it during a mild attack, and it was normal. I will continue checking until the next major attack, but I suspect blood glucose to be off the hook for now.

Thyroid hormone (specifically T4) overdose seems reasonable at this point. I stopped taking my Synthroid immediately after discovering my blood glucose was normal. I've felt much better since.

I will be seeing my doctor about this (finally) today, and see what he says, but I suspect I'll have to just steal more diagnostic requisitions to test my TSH and T3/T4, which I'm hoping will be normalizing due to the treatment of my celiac.

I'll report back when I know more Thanks to everyone for your input.