Losing Hope...

[Jestgar]

I am thinking I should have an endoscopy too since I've learned that that is the only true way to be diagnosed with Celiac (is this true?).

To try to respond to your original question, the answer is "it depends". Are you looking for an MD's diagnosis?, if yes, then, based on comments from forum members, some will diagnose on bloodwork alone, some will not diagnose without an endoscopy, with biopsies, and a few have diagnosed on dietary response.

If you are more looking for the 'second opinion' diagnosis (second to your own, since it can be easy to doubt ourselves), you might consider a naturopath (find a good one) or some other holistic medical practitioner (good one).

[GFreeMO]

Oh for cryin out loud.....Irish means well, she always mean well. She has nothing but everyones best interest at heart.

The way I see it is if gluten makes you sick, don't eat it! Corn makes me sick as hell and I didn't need some doctor to tell me not to eat it.

[Jestgar]

I think you are wise to have both procedures done --if it will make you feel better to have a sense of what "may be going on down there".

The way I see it is if gluten makes you sick, don't eat it! Corn makes me sick as hell and I didn't need some doctor to tell me not to eat it.

Yes to both of these. So many people have posted that their best experiences come when they take charge of their own health care. Decide what you want, and I'm pretty sure most of the people here will cheerlead you all the way through.

[justlisa]

You know what? People like Irish are the reason I keep coming back here..

I've read through this thread 3 times thinking I'd missed something. Good grief...every bit of advice/opinion she gave was done well...

I have to say this... I'm a grown woman and it's getting old the "walking on eggshells" that has to take place in here. And, you're probably not going to like this either but... I think some of the moderators are just a little too quick to chastise in here. I've yet to see anything that "crazy" and I've seen so many "interventions"... I can only speak for myself, but I'd prefer to come in here knowing I'm going to be treated like a rational adult. It really can be very insulting... I guess we will see if I'm allowed back?

[justlisa]

Also...

Thanks for the compliment, Squirming, but I'm just learning, too...but I do try to share what I'm learning...

And, I'm learning a lot from folks here...

[Gemini]

Oh for cryin out loud.....Irish means well, she always mean well. She has nothing but everyones best interest at heart.

The way I see it is if gluten makes you sick, don't eat it! Corn makes me sick as hell and I didn't need some doctor to tell me not to eat it.

Well said, GFreeMO! People do get passionate about Celiac when they nearly die from it. I know that road well.

It's time people realize they do not have to live and die by what a doctor says. If you wait around for a diagnosis to come, you may end up so sick, recovery won't happen. There are huge limitations with the medical community when it comes to chronic disease and much of what they do is money driven these days. There is no money in Celiac disease, people. You recover on your own, through dietary changes and it takes a long time.

No pills, no surgery, no treatments. Just food and they don't have control over the food. Start to trust your own instincts on this and you'll get better. Listen to Irish......she's a smart lady!

[Gemini]

You know what? People like Irish are the reason I keep coming back here..

I've read through this thread 3 times thinking I'd missed something. Good grief...every bit of advice/opinion she gave was done well...

I have to say this... I'm a grown woman and it's getting old the "walking on eggshells" that has to take place in here. And, you're probably not going to like this either but... I think some of the moderators are just a little too quick to chastise in here. I've yet to see anything that "crazy" and I've seen so many "interventions"... I can only speak for myself, but I'd prefer to come in here knowing I'm going to be treated like a rational adult. It really can be very insulting... I guess we will see if I'm allowed back?

You are very observant for someone who hasn't been here long.....

[justlisa]

Well said, GFreeMO! People do get passionate about Celiac when they nearly die from it. I know that road well.

It's time people realize they do not have to live and die by what a doctor says. If you wait around for a diagnosis to come, you may end up so sick, recovery won't happen. There are huge limitations with the medical community when it comes to chronic disease and much of what they do is money driven these days. There is no money in Celiac disease, people. You recover on your own, through dietary changes and it takes a long time.

No pills, no surgery, no treatments. Just food and they don't have control over the food. Start to trust your own instincts on this and you'll get better. Listen to Irish......she's a smart lady!

Agreed! Probably right up at the top of the list of reasons "why" celiac/NCGI is the red-headed step child of the medical community...no money...

[GFinDC]

Hi Kswan,

Ignoring all the drama, I do want to get back to your issues for a bit. The biopsy always has a possibility of a false negative, just like it has the possibility of a false positive. So regardless of the biopsy results, it is a good idea to try going gluten-free for 3 months or so and see if there are any improvements.

You could write a food and symptom log each day starting a week ahead of going gluten-free. Note what you eat, how you feel, how much sleep you get anything that may help you identify a change. You could track your blood pressure and your blood sugar too. Doing that first thing in the morning before eating would be good. Body temperature would be interesting to note also. I can't tell you what the changes might be, but maybe your doc could read the log and interpret. It sounds like your current doctor is not real open to diagnosing you with celiac. But maybe the new one will be more informed.

For me I had changes after going gluten-free like:

Allergy symptoms reduced greatly

Teeth and gums improved greatly.

Sinuses cleared up.

Digestion improved greatly. I could keep food down.

Feet and ankles didn't swell up as much as before, but didn't completely stop. I later found out about several food intolerances that improved that through elimination diets.

Sleep improved although it has been on and off progress.

Mind became clearer.

Memory improved.

Vision improved.

Joints didn't hurt as much, especially after starting thyroid supplements and removing nightshades.

Didn't spend all night in pain, could actually sleep.

Stopped fainting for no particular reason,

Had more energy.

stopped having a tic above my eye.

Stopped having repetitive thought loops.

Complexion improved so that I didn't look like a pale zombie.

Calmed down and wasn't angry at the drop of a hat anymore.

Circulation to my feet and legs improved recently due to stopping all grapes and alcohol.

Typing didn't improve but that is because of nerve damage in my arm and not celiac.

Anyway, I am probably forgetting some things that changed, but you get the idea.

Now other people might have symptoms like rash, or thinning hair, or a whole host of other things. So my list is just to give you one example, the symptoms each person gets can vary widely. None of us can tell you what symptoms you will see improvement in first, but it is good to note anything that seems to improve. My gut pain did not go away at first, it reduced greatly but there was still some for almost a year later. But digestion did improve.

Lots of us have to self-diagnose because the tests are not perfect, or the doctors don't do them right, or they don't do them at all, or we might have NCGI which there are no tests for now. And some of us are just silly and fail tests a lot. Really, some people are IgA deficient and they never "pass" those antibody tests. Others just don't seem to pass any celiac blood tests but still have severe symptoms. Then there are the tricky ones (silent celiac) who don't have any symptoms and yet their doctor somehow stumbles on their celiac disease.

So, don't totally trust your doctor is the message, you need to learn about this stuff yourself. You made a great start coming here to do that, as this is the best resource for celiac and gluten free on the web. Even if we get a little drama going sometimes.

[love2travel]

Oh for cryin out loud.....Irish means well, she always mean well. She has nothing but everyones best interest at heart.

Amen, Sister! What she says comes from her soul with the best of intentions, offering hope from one who has been there.

And to kswan - there is always, always hope. Do not allow yourself to ever think otherwise! Tomorrow is a new day.

[kswan08]

Very helpful! I hadn't connected the dots to other things going on in my body, like sleep problems, gums being more sensitive, headaches, sinus problems (I been sick a lot the last 2 years and that baffled me!), cloudy memory ... etc! I know that not all of this is necessarily related, but some simply has to be.

I'm leaning towards waiting on endoscopy and just having my routine colonoscopy done. At this point, my PCP is stating that she feels the blood test is reliable. I'm going to believe my body which has told me loud and clear that it is in distress. I will see an new PCP in September at which time I will be able to get heard(!). For now, I am going to continue to eat gluten, soy and lactose free, take probiotics and give my body a rest. I would like to know if I'm celiac but going back on gluten scares me too much.

I think keeping a food log, with blood pressure and blood sugars is a great idea. I can do all of that.

I'm very glad I came here and am not concerned in the least about "drama". Everyone has been helpful and I appreciate it so much. I felt very lost and am beginning to come to some understanding because of this site.

Hi Kswan,

Ignoring all the drama, I do want to get back to your issues for a bit. The biopsy always has a possibility of a false negative, just like it has the possibility of a false positive. So regardless of the biopsy results, it is a good idea to try going gluten-free for 3 months or so and see if there are any improvements.

You could write a food and symptom log each day starting a week ahead of going gluten-free. Note what you eat, how you feel, how much sleep you get anything that may help you identify a change. You could track your blood pressure and your blood sugar too. Doing that first thing in the morning before eating would be good. Body temperature would be interesting to note also. I can't tell you what the changes might be, but maybe your doc could read the log and interpret. It sounds like your current doctor is not real open to diagnosing you with celiac. But maybe the new one will be more informed.

For me I had changes after going gluten-free like:

Allergy symptoms reduced greatly

Teeth and gums improved greatly.

Sinuses cleared up.

Digestion improved greatly. I could keep food down.

Feet and ankles didn't swell up as much as before, but didn't completely stop. I later found out about several food intolerances that improved that through elimination diets.

Sleep improved although it has been on and off progress.

Mind became clearer.

Memory improved.

Vision improved.

Joints didn't hurt as much, especially after starting thyroid supplements and removing nightshades.

Didn't spend all night in pain, could actually sleep.

Stopped fainting for no particular reason,

Had more energy.

stopped having a tic above my eye.

Stopped having repetitive thought loops.

Complexion improved so that I didn't look like a pale zombie.

Calmed down and wasn't angry at the drop of a hat anymore.

Circulation to my feet and legs improved recently due to stopping all grapes and alcohol.

Typing didn't improve but that is because of nerve damage in my arm and not celiac.

Anyway, I am probably forgetting some things that changed, but you get the idea.

Now other people might have symptoms like rash, or thinning hair, or a whole host of other things. So my list is just to give you one example, the symptoms each person gets can vary widely. None of us can tell you what symptoms you will see improvement in first, but it is good to note anything that seems to improve. My gut pain did not go away at first, it reduced greatly but there was still some for almost a year later. But digestion did improve.

Lots of us have to self-diagnose because the tests are not perfect, or the doctors don't do them right, or they don't do them at all, or we might have NCGI which there are no tests for now. And some of us are just silly and fail tests a lot. Really, some people are IgA deficient and they never "pass" those antibody tests. Others just don't seem to pass any celiac blood tests but still have severe symptoms. Then there are the tricky ones (silent celiac) who don't have any symptoms and yet their doctor somehow stumbles on their celiac disease.

So, don't totally trust your doctor is the message, you need to learn about this stuff yourself. You made a great start coming here to do that, as this is the best resource for celiac and gluten free on the web. Even if we get a little drama going sometimes.

[Bubba's Mom]

Oh - one more question. The PCP told me to take Prilosec twice a day as well as Align twice a day. Expensive, not covered by insurance so I just want to know what the consensus here is. I've been taking both for 2+ weeks. Reflux is better but not sure what the probiotics are doing, if anything.

I was very sick..and my Dr. wouldn't listen to me. He kept saying there was nothing wrong with me..eat Tums..try increasing my antidepressant. I continued to go downhill. I was losing weight and didn't want to eat. When I did eat I felt lousy, had reflux, and nausea, bloating, gas...etc.

I found a GI on my own. She ordered the blood tests for Celiac and scheduled an endoscope and stomach emptying tests. My blood tested negative for Celiac. Around 20-30% of test negative. The endoscope showed severe damage. Not just villi blunting, but total flattening and ulceration.

I was DXed Celiac from that endoscope. I was told "You have Celiac disease. Don't eat gluten. Look it up on the internet" by the GI. Follow up blood tests were ordered that showed severe malabsorption as was expected.

I was told to follow up with my PCP. My PCP said he didn't agree with my DX and was no help. I was still experiencing a LOT of problems.

With a food/symptom log I was able to see that I couldn't tolerate soy in any form. Dairy was out too.

I continued to have problems, including weight loss and nausea. Additional food intolerances showed up.

Found a new GI and asked about testing for small intestine bacterial overgrowth (SIBO). He did another scope and said I "probably" had refractory sprue..and he wouldn't test me for SIBO, there's no way I could have it. Even asked me if "Dr. Google" told me to ask for the test! He did order a HIDA scan to test gallbladder function. Mine was low (30%)..and he suggested I see a surgeon to have it removed. He referred me to Mayo Clinic for my "refractory sprue".

After 3 visits and a lot of tests, my Celiac DX stands. I don't have refractory sprue. When I was tested for SIBO, the results came back a very strong positive. I was told that reacting to more and more foods can be caused by SIBO. The bad bacteria feed on your food and emit toxins. The probiotics you are taking helps crowd out bad bacteria and aids in digestion. Keep taking it.

The tricky part here is..if you are taking an acid blocker..it will make SIBO worse. Acid helps keep it in check. Reflux may just be a result of a food intolerance? A food log will help you figure that out.

My gallbladder wasn't funtioning properly, causing pain and nausea. The hormone(CCK)that tells the gallbladder to squeeze bile is produced in the duodenum. Damage there can prevent the hormone from being made..or being sent. In my case, the pancreas wasn't getting the message to release digestive enzymes either.

It's common for Celiacs to have damage in the duodenum when first DXed. Taking digestive enzymes helps your inflamed system break down your foods.

I took over the counter ones, but was put on much stronger RX ones after testing. As the duodenum heals, many times the gallbladder and pancreas function improve because they start getting the CCK signals.

Push for endoscope IMHO. Keep taking the probiotics, keep a food log and omit foods you react badly to.

Look for soy, dairy, and gluten in any vitamins or supplements you take. (I found most fish oil to have soy, so I take Salmon oil. Many multi-vitamins have it too. I take a lanolin based vitamin E). Ask the GI to run blood vitamin/mineral panels if your PCP won't do it, so you know what you may need to supplement.

Try digestive enzymes. Eat smaller amounts..but eat more often. Try to get a bit of protein with every meal.

Drink plenty of water. Many of us tend to be a bit dehydrated.

I hope your tests give you the answers you need to get on the road to good health. If gluten-free, dairy free, soy free makes you feel better, stay with it. You don't need a Dr's permission to eat that way.

[kswan08]

I have read your response three times now. So helpful! You cleared up some lingering questions I had as well as explained some of the processes. Thank you! Are there any digestive enzymes that you recommend?

Interesting about the reflux and acid blockers. I wasn't having reflux until I began having severe digestive distress. I am still taking Prilosec twice a day along with the Align.

My PCP says that the blood work is "completely reliable" and that a false negative is very rare. I can't understand a doctor who thinks anyone would make this up! I am trying to find research supported data to show this doctor that there is a relatively high incidence of false negatives.

Most recent pain is on my sides. It hurts to press on my sides and when sitting or lying down I can feel a dull pain. I don't know if this is my kidneys or what.

Anyway, thanks so much for taking the time to share!

I was very sick..and my Dr. wouldn't listen to me. He kept saying there was nothing wrong with me..eat Tums..try increasing my antidepressant. I continued to go downhill. I was losing weight and didn't want to eat. When I did eat I felt lousy, had reflux, and nausea, bloating, gas...etc.

I found a GI on my own. She ordered the blood tests for Celiac and scheduled an endoscope and stomach emptying tests. My blood tested negative for Celiac. Around 20-30% of test negative. The endoscope showed severe damage. Not just villi blunting, but total flattening and ulceration.

I was DXed Celiac from that endoscope. I was told "You have Celiac disease. Don't eat gluten. Look it up on the internet" by the GI. Follow up blood tests were ordered that showed severe malabsorption as was expected.

I was told to follow up with my PCP. My PCP said he didn't agree with my DX and was no help. I was still experiencing a LOT of problems.

With a food/symptom log I was able to see that I couldn't tolerate soy in any form. Dairy was out too.

I continued to have problems, including weight loss and nausea. Additional food intolerances showed up.

Found a new GI and asked about testing for small intestine bacterial overgrowth (SIBO). He did another scope and said I "probably" had refractory sprue..and he wouldn't test me for SIBO, there's no way I could have it. Even asked me if "Dr. Google" told me to ask for the test! He did order a HIDA scan to test gallbladder function. Mine was low (30%)..and he suggested I see a surgeon to have it removed. He referred me to Mayo Clinic for my "refractory sprue".

After 3 visits and a lot of tests, my Celiac DX stands. I don't have refractory sprue. When I was tested for SIBO, the results came back a very strong positive. I was told that reacting to more and more foods can be caused by SIBO. The bad bacteria feed on your food and emit toxins. The probiotics you are taking helps crowd out bad bacteria and aids in digestion. Keep taking it.

The tricky part here is..if you are taking an acid blocker..it will make SIBO worse. Acid helps keep it in check. Reflux may just be a result of a food intolerance? A food log will help you figure that out.

My gallbladder wasn't funtioning properly, causing pain and nausea. The hormone(CCK)that tells the gallbladder to squeeze bile is produced in the duodenum. Damage there can prevent the hormone from being made..or being sent. In my case, the pancreas wasn't getting the message to release digestive enzymes either.

It's common for Celiacs to have damage in the duodenum when first DXed. Taking digestive enzymes helps your inflamed system break down your foods.

I took over the counter ones, but was put on much stronger RX ones after testing. As the duodenum heals, many times the gallbladder and pancreas function improve because they start getting the CCK signals.

Push for endoscope IMHO. Keep taking the probiotics, keep a food log and omit foods you react badly to.

Look for soy, dairy, and gluten in any vitamins or supplements you take. (I found most fish oil to have soy, so I take Salmon oil. Many multi-vitamins have it too. I take a lanolin based vitamin E). Ask the GI to run blood vitamin/mineral panels if your PCP won't do it, so you know what you may need to supplement.

Try digestive enzymes. Eat smaller amounts..but eat more often. Try to get a bit of protein with every meal.

Drink plenty of water. Many of us tend to be a bit dehydrated.

I hope your tests give you the answers you need to get on the road to good health. If gluten-free, dairy free, soy free makes you feel better, stay with it. You don't need a Dr's permission to eat that way.

[Gemini]

I was very sick..and my Dr. wouldn't listen to me. He kept saying there was nothing wrong with me..eat Tums..try increasing my antidepressant. I continued to go downhill. I was losing weight and didn't want to eat. When I did eat I felt lousy, had reflux, and nausea, bloating, gas...etc.

I found a GI on my own. She ordered the blood tests for Celiac and scheduled an endoscope and stomach emptying tests. My blood tested negative for Celiac. Around 20-30% of test negative. The endoscope showed severe damage. Not just villi blunting, but total flattening and ulceration.

I was DXed Celiac from that endoscope. I was told "You have Celiac disease. Don't eat gluten. Look it up on the internet" by the GI. Follow up blood tests were ordered that showed severe malabsorption as was expected.

I was told to follow up with my PCP. My PCP said he didn't agree with my DX and was no help. I was still experiencing a LOT of problems.

With a food/symptom log I was able to see that I couldn't tolerate soy in any form. Dairy was out too.

I continued to have problems, including weight loss and nausea. Additional food intolerances showed up.

Found a new GI and asked about testing for small intestine bacterial overgrowth (SIBO). He did another scope and said I "probably" had refractory sprue..and he wouldn't test me for SIBO, there's no way I could have it. Even asked me if "Dr. Google" told me to ask for the test! He did order a HIDA scan to test gallbladder function. Mine was low (30%)..and he suggested I see a surgeon to have it removed. He referred me to Mayo Clinic for my "refractory sprue".

After 3 visits and a lot of tests, my Celiac DX stands. I don't have refractory sprue. When I was tested for SIBO, the results came back a very strong positive. I was told that reacting to more and more foods can be caused by SIBO. The bad bacteria feed on your food and emit toxins. The probiotics you are taking helps crowd out bad bacteria and aids in digestion. Keep taking it.

The tricky part here is..if you are taking an acid blocker..it will make SIBO worse. Acid helps keep it in check. Reflux may just be a result of a food intolerance? A food log will help you figure that out.

My gallbladder wasn't funtioning properly, causing pain and nausea. The hormone(CCK)that tells the gallbladder to squeeze bile is produced in the duodenum. Damage there can prevent the hormone from being made..or being sent. In my case, the pancreas wasn't getting the message to release digestive enzymes either.

It's common for Celiacs to have damage in the duodenum when first DXed. Taking digestive enzymes helps your inflamed system break down your foods.

I took over the counter ones, but was put on much stronger RX ones after testing. As the duodenum heals, many times the gallbladder and pancreas function improve because they start getting the CCK signals.

Push for endoscope IMHO. Keep taking the probiotics, keep a food log and omit foods you react badly to.

Look for soy, dairy, and gluten in any vitamins or supplements you take. (I found most fish oil to have soy, so I take Salmon oil. Many multi-vitamins have it too. I take a lanolin based vitamin E). Ask the GI to run blood vitamin/mineral panels if your PCP won't do it, so you know what you may need to supplement.

Try digestive enzymes. Eat smaller amounts..but eat more often. Try to get a bit of protein with every meal.

Drink plenty of water. Many of us tend to be a bit dehydrated.

I hope your tests give you the answers you need to get on the road to good health. If gluten-free, dairy free, soy free makes you feel better, stay with it. You don't need a Dr's permission to eat that way.

Now this is a shining example of someone who has done their homework! I think you have earned your doctor badge!

I still have trouble with pancreatic insufficiency and take a digestive enzyme with meals, which helps tremendously. That, coupled with probiotics every morning, keeps me normal. All of your suggestions are spot on!

[Bubba's Mom]

I have read your response three times now. So helpful! You cleared up some lingering questions I had as well as explained some of the processes. Thank you! Are there any digestive enzymes that you recommend?

Interesting about the reflux and acid blockers. I wasn't having reflux until I began having severe digestive distress. I am still taking Prilosec twice a day along with the Align.

My PCP says that the blood work is "completely reliable" and that a false negative is very rare. I can't understand a doctor who thinks anyone would make this up! I am trying to find research supported data to show this doctor that there is a relatively high incidence of false negatives.

Most recent pain is on my sides. It hurts to press on my sides and when sitting or lying down I can feel a dull pain. I don't know if this is my kidneys or what.

Anyway, thanks so much for taking the time to share!

There are several digestive enzymes brands that are sold over the counter. Some are mostly plant based with bromelain, papain, etc. Some have pork bile too. Just be sure to read the label for the ingredients. I'd be surprised if any have gluten, soy, or dairy though. I was using a store brand from Meijer's. I think most brands are very similar though?

The pain in your sides may be swollen lymph nodes? There are quite a few in the intestine area. Many of us just think of the ones in our necks/arm pits.

You can also get swelling in the intestine itself, it's from inflamation.

This sort of pain is very common and improves once you aren't consuming foods that you are intolerant of. This can be gluten, soy, dairy, corn, or just about anything. There's no easy test for intolerances.

A food/symptom log seems to be the best way to figure out what doesn't agree with you. We are all different.

False negatives..there are a lot of sources online. Even the Celiac specialists state that Celiac testing has false negatives. It seems like a lot of Dr.s are hesitant to DX Celiac? I don't know if it's because it's a disease which is treated by diet and not RXs? They seem to prefer to write RXs to squelch symptoms, rather than look for and treat the causes of symptoms.

It's infuriating..but it keeps them in business?

My uncle said that Dr.s "practice" medicine, and bury their mistakes. Sad but true.

[kswan08]

Thanks. I hadn't thought about lymph nodes or even inflammation. The side pain has been better the past 2 days. I have also been less bloated. I got very serious about lactose and soy along with gluten and got a little better. I feel tired all the time though and that is worrisome. I have also had three sores suddenly emerge - one on my head, one on my back and one on my left upper thigh. The are painful and raw. Not shingles or dry skin. Weird. I feel like my body is purging toxins and it comes out everywhere.

I also got a rash today after eating 2 eggs. I've been eating eggs for the last 3 weeks with no problem but the only thing I ate prior to the rash was the eggs and some plain tuna. With the ways things are going, I won't be able to eat anything.

Doctor giving me a hard time about testing vitamin levels. Says she tested for D and that's enough. She's sticking by her statement that the negative blood test is reliable. Whatever. It's discouraging to have a doctor like this. I'm hoping that the new one I will switch too in Sept (she's on maternity leave) will be light-years better.

It's hard not to feel discouraged.

There are several digestive enzymes brands that are sold over the counter. Some are mostly plant based with bromelain, papain, etc. Some have pork bile too. Just be sure to read the label for the ingredients. I'd be surprised if any have gluten, soy, or dairy though. I was using a store brand from Meijer's. I think most brands are very similar though?

The pain in your sides may be swollen lymph nodes? There are quite a few in the intestine area. Many of us just think of the ones in our necks/arm pits.

You can also get swelling in the intestine itself, it's from inflamation.

This sort of pain is very common and improves once you aren't consuming foods that you are intolerant of. This can be gluten, soy, dairy, corn, or just about anything. There's no easy test for intolerances.

A food/symptom log seems to be the best way to figure out what doesn't agree with you. We are all different.

False negatives..there are a lot of sources online. Even the Celiac specialists state that Celiac testing has false negatives. It seems like a lot of Dr.s are hesitant to DX Celiac? I don't know if it's because it's a disease which is treated by diet and not RXs? They seem to prefer to write RXs to squelch symptoms, rather than look for and treat the causes of symptoms.

It's infuriating..but it keeps them in business?

My uncle said that Dr.s "practice" medicine, and bury their mistakes. Sad but true.

[squirmingitch]

kswan, I don't want to scare you but the rashes & sores you are getting could possibly be dermatitis herpetiformis (dh) aka the celiac rash. The eggs may not be the problem b/c you are sensitive to eggs but rather b/c of the iodine content in the egg yolk combined with the iodine content of the tuna. Iodine is known to make dh flare & there are plenty of us here with dh who can attest to that fact.

If this is dh presenting with you, it would also go a long way toward explaining the neg. blood test. Celiacs with dh tend to have more neg. blood tests than regular celiacs b/c the antibodies are in our SKIN.

Can you take photos of your sores & rash & post them for us please? And can you describe them in detail?

Also, take a look at these photos & see if anything looks like what you have:

https://www.celiac.com/forums/topic/94056-dh-photo-bank/

[kswan08]

After viewing the photo's I am thankful to report that my rash is nothing like DH. It's definitely a allergic rash: flat, itchy and similar to very dry skin. The high humidity here is making it itch more. It comes and goes and shows up on various part of my body. It's more like a flat hives reaction. I'm grateful it's not DH. I do think that it came on due to iodine though. Pretty soon I won't be able to eat anything! My body is screaming at me every time I eat anything. I know it takes time to calm everything down, and things have definitely gotten MUCH better since I cut out gluten and lactose (and now soy) but I feel like my options are increasingly limited. I hate to cook but realize that this is going to need to change.

On the upside, I've started to lose weight.

I'm struggling with fatigue now. I am exhausted by noon and often fall asleep in the afternoon if I'm home. I fight it, but it feels like I'm drugged and just have to sleep for an hour. I'm a teacher and worrying about this fatigue affecting me when school starts up. Is this a typical symptom (or totally unrelated) and how can I combat it?

Thanks....

[bartfull]

The list of foods that bothered me continued to grow for the first year. I was afraid that eventually I would not be able to eat anything! But after a year of living on SUCH a limited diet I finally healed enough to start adding things back. I think I mentioned before that it helped to eat only organic foods for a while because I was even reacting to pesticide residue no matter how well I washed my food.

Now I can eat lots of things I never thought I would eat again. I'm hoping that eventually gluten will be the ONLY thing I can't eat.

And yes, it is normal to feel tired and dragged out. If you can find a good multi-vitamin that is free of all of your "poisons" it will help. And of course time will help. I think when school starts you will find that even if you're exhausted, your determination will get you through. It may not be easy, but you can do it. I wish you all the best.

[kswan08]

Thanks, Bartfull. Any recommendations for a multivitamin that won't make me sick?

[bartfull]

I think there are plenty of gluten-free vitamins out there. I haven't found one yet that is corn-free too, so I have been eating lots of sweet potaotes and avocados. They are both packed with vitamins.

Now that my corn problem seems to have subsided, I will be going to the healthfood store tomorrow to see if I can find one that is simply gluten-free and soy-free. But I bet there are a lot of folks here who can recommend something.

[kswan08]

Just a quick update. I cancelled my colonoscopy and fired my PCP. She was treating me like I was the problem and it was in my head. I have never been so condescended to by a medical professional and I deal with a lot of them because I have a disabled daughter. Anyway, when the PCP told me that I didn't need to see a GI and that I was just having a routine screening colonoscopy I decided I would just stop all of this and wait until I can see the new doctor (back in mid-Sept). Not having a colonoscopy right now is the least of my troubles! I told the doc that I couldn't keep 3 bottles of magnesium down and she said to just take Zofram. Hello! I can't put that much liquid in my stomach! The Zofram isn't going to stop me from puking it up! Grrrrr.

Anyway, that's that.

My hair is thinning and my joints hurt like an old lady but my pain is less constant now. Off all gluten, soy and dairy. Stopped eggs and tuna too. Dropped 8 pounds since I first started this thread. At least I'm not still gaining. Bloating is mostly at night and not every night. Some nights I wake up with pain, others I sleep straight through. Seems like progress to me.

I've stayed on Align and Ompeprazole but am not taking a digestive enzyme. It's bloody expensive being sick!! I know you all know this already.

K

[Bubba's Mom]

Just a quick update. I cancelled my colonoscopy and fired my PCP. She was treating me like I was the problem and it was in my head. I have never been so condescended to by a medical professional and I deal with a lot of them because I have a disabled daughter. Anyway, when the PCP told me that I didn't need to see a GI and that I was just having a routine screening colonoscopy I decided I would just stop all of this and wait until I can see the new doctor (back in mid-Sept). Not having a colonoscopy right now is the least of my troubles! I told the doc that I couldn't keep 3 bottles of magnesium down and she said to just take Zofram. Hello! I can't put that much liquid in my stomach! The Zofram isn't going to stop me from puking it up! Grrrrr.

Anyway, that's that.

My hair is thinning and my joints hurt like an old lady but my pain is less constant now. Off all gluten, soy and dairy. Stopped eggs and tuna too. Dropped 8 pounds since I first started this thread. At least I'm not still gaining. Bloating is mostly at night and not every night. Some nights I wake up with pain, others I sleep straight through. Seems like progress to me.

I've stayed on Align and Ompeprazole but am not taking a digestive enzyme. It's bloody expensive being sick!! I know you all know this already.

K

I fired my PCP when going through all of this stuff too. He kept telling me there was nothing wrong with me..and I'm not exagerating...I was dying!

Be careful with the Omeprazole. Acid reflux can be caused by too little acid, rather than too much. When you don't produce enough it sits on top of your food and is burped up when your food isn't digesting properly. Many many people are put on it without tests to see if they are indeed, producing too much acid.

All of the info I've seen on acid blockers state that they are to be used for a small time frame, yet people are put on them and kept on them for years. Without enough acid in your system you can develope a small intestine bacterial overgrowth (SIBO). The acid is supposed to be there to keep that from happening. It also affects the strength of your bones, and other things too.

When I went gluten-free my reflux settled way down. I went off acid blockers for good a few months later, even though the GI I saw said I shouldn't. I've not had any reflux since. The pharma companies give bonuses to Dr.s that prescribe, and keep patients on certain meds and acid blockers are high on the list.

I hope you are able to find a good new PCP. You should be a team working together for good health. Being talked down to is like being slapped in the face and told you're stupid!

[squirmingitch]

Hear, hear for taking charge of our own health & not submitting to doctors who are so blind they think they are God.

[FruitEnthusiast]

Hear, hear for taking charge of our own health & not submitting to doctors who are so blind they think they are God.

Isn't that the truth! In the dictionary, I think the words Doctor and Arrogant are synonymous They like use that insulting word too... Psychosomatic... when they have NO idea what else to say.