It's A Miracle!

[Rachel--24]

Dear Rachel,

That would explain why the GI doctors missed mine. I had a colonoscopy, endoscopy, intercolisis, gastric emptying study and blood work done when I was up at IU Med in 2001. I bet anything they did not do a biopsy, because that GI doctor was convinced there was no way I had Celiac.

Jin,

Your signature says that you had a negative biopsy in 2001....so I had always assumed that it was done when you had your endoscopy??

[souzahanson]

Rachel,

A colonoscopy is an endoscopy. A colonosope is the longest of the scopes that go through your rectum. There is a sigmodoscope, but that is only to exam the lower colon. When you go through your mouth that is call an EGD.

I had both a colonoscopy and EGD in 2001 at which time my GI said I had celiac.

[souzahanson]

I recently tested positive for Lyme disease through IGeneX labs western blot. My PCP started doxy treatment as soon as results came back positive. I have been on doxy 300mg per day and after 8 days I feel great!!! No herx and symptoms are quickly dissapearing I haven't had to take a daytime nap the past 2 days after napping daily for the past year. Muscle/joint pain almost gone totally, can walk up stairs, bend over and get out of a chair with ease. Irritability gone, I feel almost giddy!!! Short-term memory improved greatlly as has libido and sense of humor!!! I can't beleive it!!! Yahoooooo!!!

Susie,

I've done lots of research in the last couple days and I would refer you to the following link Open Original Shared Link. According to my hours of reading doxy will not solve your lyme problem if you are considered "Chronic", which you are based on your posts.

I will be doing my western blot through IgeneX early this week. I'm waiting on the lab reqs.

[CarlaB]

If you do in fact have celiac or a known gluten intolerance with a celiac gene then you would definately need to remain gluten free. Sherry is one who has celiac and lyme. There are others (like Carla) who don't have the celiac genes that are doing fine on gluten now.

If you did have a positive celiac test you have celiac disease. All my celiac testing was negative, so once I corrected my leaky gut by getting rid off the various bad bacteria there my food intolerances cleared up.

I take lots of herbs with my abx. I am on the Cowden Protocol (www.nutramedix.com). I also just listed all my supps today on the OMG thread, so you can see what else I take there.

With Lyme treatment, it's important to rebuild the immune system as well as get rid of the bacteria. The Dr. B guidelines linked in a previous post are GREAT.

[Rachel--24]

Rachel,

A colonoscopy is an endoscopy. A colonosope is the longest of the scopes that go through your rectum. There is a sigmodoscope, but that is only to exam the lower colon. When you go through your mouth that is call an EGD.

I'm sorry, but a colonoscopy is not used to diagnose Celiac Disease. Please feel free to ask other board members which tests are used to diagnose Celiac Disease.

Perhaps I should have stated upper endoscopy.....because that is how the the GI reaches the small intestine. The colonoscope cannot reach the small intestine.

I dont know why your GI performed the colonoscopy and I dont know why he told you that you have Celiac Disease when he was finished with the procedure....but as you can see from my quote (below)....that is not how the endoscopy for Celiac Disease is done.

Here is a complete explanation of how the endoscopy is performed and how celiac disease is diagnosed.

Endoscopy in celiac: What is it and how is it done?

The medical name for upper endoscopy is esophagogastroduodenoscopy or EGD for short. The endoscope is a thin flexible tube about the diameter of a fat pencil that has a video chip in the end and channels for flushing of water, suctioning of secretions and passage of instruments. It has dials that allow the tube to be turned up/down and right and left at the tip permitting it to be passed through the mouth, down the esophagus or feeding tube, into the stomach and then into the first part of the small intestine the duodenum, hence the name EGD.

Endoscopy in celiac: What is examined in celiac and how well can the lining be seen?

Celiac disease affects the upper portion of the small intestine, in the two sections known as the duodenum and jejunum. The examination of the small intestine is usually limited to the first section termed the duodenum though occasionally the second section known as the jejunum may be reached especially when a longer endoscope is used. The resolution of video images are very high with the latest endoscopes and also may have a magnification and color contrast mode to detect very subtle signs of damage of the small intestine.

Endoscopy in celiac: What are the typical findings?

The characteristic appearance of the surface of the small intestine in celiac disease include superficial ulcerations that are commonly linear, flattening of the folds, notching or scalloping of the folds and a mosaic like pattern. However, the surface may appear normal and only under microscopic examination of samples will the lining show signs of gluten caused injury.

Endoscopy in celiac: What are biopsies?

Samples of small intestine are obtained with biopsy forceps that consist of tiny jaws with cups that permit pinching off samples of the intestinal lining. This is painless and very safe. The samples are sent to a pathology lab in a preservative solution, processed, mounted on a microscope slide, and stained for examination under the microscope by a pathologist. Small intestine injury from gluten may be patchy, therefore, several samples are recommended. A minimum of 4 pieces and preferably 8-12 samples should be obtained to avoid missing microscopic signs of celiac disease.

Endoscopy in celiac: What does the pathologist look for on the slides?

The pathologist examines the slide for evidence of damage or injury characteristic of gluten sensitivity. Occasionally special stains are required to see signs of irritation known as inflammation characterized by an increased number of a type of immune active white blood cells called lymphocytes. In early celiac and gluten sensitivity without celiac disease the biopsy may be normal and the diagnosis cannot be established by the biopsy.

[NoGluGirl]

Dear Rachel,

As far as I know, if they had taken a biopsy, it was in the colon. After I got home, I had the printed out report of the testing done. There was no mention of a biopsy being taken, especially not during the endoscopy. I assumed they had taken a biopsy, but considering the content of the report, it is doubtful. Thank you for posting the information about Celiac diagnosis!

This clears up a lot of suspicions for me. I always knew they could not have even explored this possibility.

My doctor was so arrogant and sure she knew it all, that she refused to believe Celiac was the cause of illness. I am not sure I will ever mentally recover from the horrors I experienced at that hospital. Even worse was the report primarily described my behavior to be hysterical and such. Anyone reading that report would assume insanity instead of looking for a physical cause of illness.

I was only 18 years old, in a strange town, and was severely drugged. My blood sugar was also low. Who would not be terrified? I had a nurse threaten to pour the Golightly solution down my throat with a tube because I was having difficulty getting it down! I could not figure out why my parents would allow them to do such a thing, only to find out much later that they were not told what was going on.

I remember walking down the hallway with the IV attached and it was a long hallway. They transported me in an old wooden wheelchair that Roosevelt himself could have sat in! The same man who served food also did housekeeping as well as transport. I ended up having to be catherized due to not being able to go to the bathroom on my own, and many of those nurses obviously had no idea how to insert one of those things. By the time I got home, I had no urine coming out, only blood.

I had a terrible infection. Now, here is the kicker: This team of geniuses of about ten or so doctors could not figure out why I had dropped from 87 to 84 pounds after being there for four and a half days when I had only been living off of Jell-O, juice, and broth. After all of this hell, they concluded that I just had an imbalance of serotonin in my brain, making me feel sick when I am not. I would like to point out that pretty well everyone in the U.S. has a shortage of serotonin due to not getting enough sun or Omega-3 fatty acids.

Naturally, I was then placed on Celexa. The side effects alone are frightening, but trying to get off of a Selective Serotonin Re-Uptake Inhibitor is nearly impossible.

All of the research I have done on this class of drugs has revealed nothing good. I found out many of those teenagers who were involved in school shootings had been placed on these pills only about two or three weeks prior to the incidents. Something tells me this is not a coincidence. If anyone attempts to go off of them suddenly, withdrawal can be unbearable. They had me on Paxil as a teenager, and even being weaned the withdrawal is horrible. Oh, and let us not forget to mention that suddenly stopping these medications can result in suicide.

In my opinion, SSRIs should be banned. They are too dangerous and addictive. I knew what they were getting at up at the hospital when the Chief Resident started talking about his identity crisis in high school. Yes, you read that right. WTH? Fast-forward to seven years later. I am still on this awful pill I feel I may never get off of. I am no less depressed since my emotional state is due to dealing with health issues that were never resolved (due to what those morons wrote), and a family that refuses to accept or understand the situation. My parents will believe anything an idiot in a labcoat with an MD after their name.

Others' experiences on this thread do not surprise me one bit. Of all of the doctors I have seen, the GI doctors seem to have the worst egos. They look up people's butts all day, so I really do not see how they have the right to look down upon the rest of us! Perhaps they should be reminded of that. One thing is for certain, and that is when I get my answers, a lot of doctors are going to get some very nasty letters. It is time these people get educated!

Sincerely,

Jin

[souzahanson]

I'm sorry, but a colonist is not used to diagnose Celia Disease. Please feel free to ask other board members which tests are used to diagnose Celia Disease.

Perhaps I should have stated upper endoscopy.....because that is how the the GI reaches the small intestine. The colonoscope cannot reach the small intestine.

I dont know why your GI performed the colonist and I dont know why he told you that you have Celia Disease when he was finished with the procedure....but as you can see from my quote (below)....that is not how the endoscopy for Celia Disease is done.

Here is a complete explanation of how the endoscopy is performed and how celiac disease is diagnosed.

Rachel,

I did have the EGD(or upper GI endoscopy). The reason a colonoscopy(lower GI endoscopy) was performed was because they were both done back to back under the same anethetics on the same day.

Sorry for the miscommunication.

[souzahanson]

Dear Rachel,

As far as I know, if they had taken a biopsy, it was in the colon. After I got home, I had the printed out report of the testing done. There was no mention of a biopsy being taken, especially not during the endoscopy. I assumed they had taken a biopsy, but considering the content of the report, it is doubtful. Thank you for posting the information about Celiac diagnosis!

This clears up a lot of suspicions for me. I always knew they could not have even explored this possibility.

My doctor was so arrogant and sure she knew it all, that she refused to believe Celiac was the cause of illness. I am not sure I will ever mentally recover from the horrors I experienced at that hospital. Even worse was the report primarily described my behavior to be hysterical and such. Anyone reading that report would assume insanity instead of looking for a physical cause of illness.

I was only 18 years old, in a strange town, and was severely drugged. My blood sugar was also low. Who would not be terrified? I had a nurse threaten to pour the Golightly solution down my throat with a tube because I was having difficulty getting it down! I could not figure out why my parents would allow them to do such a thing, only to find out much later that they were not told what was going on.

I remember walking down the hallway with the IV attached and it was a long hallway. They transported me in an old wooden wheelchair that Roosevelt himself could have sat in! The same man who served food also did housekeeping as well as transport. I ended up having to be catherized due to not being able to go to the bathroom on my own, and many of those nurses obviously had no idea how to insert one of those things. By the time I got home, I had no urine coming out, only blood.

I had a terrible infection. Now, here is the kicker: This team of geniuses of about ten or so doctors could not figure out why I had dropped from 87 to 84 pounds after being there for four and a half days when I had only been living off of Jell-O, juice, and broth. After all of this hell, they concluded that I just had an imbalance of serotonin in my brain, making me feel sick when I am not. I would like to point out that pretty well everyone in the U.S. has a shortage of serotonin due to not getting enough sun or Omega-3 fatty acids.

Naturally, I was then placed on Celexa. The side effects alone are frightening, but trying to get off of a Selective Serotonin Re-Uptake Inhibitor is nearly impossible.

All of the research I have done on this class of drugs has revealed nothing good. I found out many of those teenagers who were involved in school shootings had been placed on these pills only about two or three weeks prior to the incidents. Something tells me this is not a coincidence. If anyone attempts to go off of them suddenly, withdrawal can be unbearable. They had me on Paxil as a teenager, and even being weaned the withdrawal is horrible. Oh, and let us not forget to mention that suddenly stopping these medications can result in suicide.

In my opinion, SSRIs should be banned. They are too dangerous and addictive. I knew what they were getting at up at the hospital when the Chief Resident started talking about his identity crisis in high school. Yes, you read that right. WTH? Fast-forward to seven years later. I am still on this awful pill I feel I may never get off of. I am no less depressed since my emotional state is due to dealing with health issues that were never resolved (due to what those morons wrote), and a family that refuses to accept or understand the situation. My parents will believe anything an idiot in a labcoat with an MD after their name.

Others' experiences on this thread do not surprise me one bit. Of all of the doctors I have seen, the GI doctors seem to have the worst egos. They look up people's butts all day, so I really do not see how they have the right to look down upon the rest of us! Perhaps they should be reminded of that. One thing is for certain, and that is when I get my answers, a lot of doctors are going to get some very nasty letters. It is time these people get educated!

Sincerely,

Jin

Jin,

I feel your pain with regards to the doctors and medical system. I've worked in hospitals for the past 20yrs. Many doctors are not very good, not even at their specialty. My respiratory education was a 2 yr A.S. degree, and I would challenge almost any doctor, any where, and any time when it comes to mechanical ventilation(the respirator).

I HAVE NO FAITH IN MOST DOCTORS OR HOSPITALS. THIS IS EVEN MORE CONFIRMED AFTER READING ABOUT THE MANY EXPERIENCES ON THIS AMONG OTHER FORUM. READ, RESEARCH AND INSIST ON THINGS WHEN YOU SEE YOUR DOCTORS. AT 6'5' AND 240LBS I CAN TELL YOU DOCS GIVE ME WHAT I TELL THEM TO GIVE ME. WE NEED TO FIGHT FOR OURSELVES, AFTER ALL IT'S OUR LIFE NOT JUST A PAYCHECK!!!!!!!!!!!!!!!!!!!!1

[NoGluGirl]

Jin,

I feel your pain with regards to the doctors and medical system. I've worked in hospitals for the past 20yrs. Many doctors are not very good, not even at their specialty. My respiratory education was a 2 yr A.S. degree, and I would challenge almost any doctor, any where, and any time when it comes to mechanical ventilation(the respirator).

I HAVE NO FAITH IN MOST DOCTORS OR HOSPITALS. THIS IS EVEN MORE CONFIRMED AFTER READING ABOUT THE MANY EXPERIENCES ON THIS AMONG OTHER FORUM. READ, RESEARCH AND INSIST ON THINGS WHEN YOU SEE YOUR DOCTORS. AT 6'5' AND 240LBS I CAN TELL YOU DOCS GIVE ME WHAT I TELL THEM TO GIVE ME. WE NEED TO FIGHT FOR OURSELVES, AFTER ALL IT'S OUR LIFE NOT JUST A PAYCHECK!!!!!!!!!!!!!!!!!!!!1

Dear souzahanson,

It is truly sad how the medical system works. The tragedy is that doctors also tend to bully nurses into doing things that is not good for the patient. That is likely the reason I was treated the way I had been at IU Med. Nurses and Techs were terrified of this doctor. You should have seen their faces when I told them who my doctor was when they asked!

They would make this face automatically, as if it were a reflex. You know the "Oh God, not her" look? My mother worked at a hospital for nearly five years, and she got irritated by the doctors' attitudes toward staff members they saw as lower than themselves. I also am annoyed at the way a doctor will believe anything another doctor writes about a patient, just because they are a doctor! Doctors also will take up for another doctor even though they do not know them! This form of solidarity is absurd.

You are fortunate to be so tall! I thought I had half a chance, since my father is 6'2. I cannot help but wonder if I could have been tall had I been diagnosed sooner. At least I was luckier than Mom. She is only 4'11 1/2! I just recently grew 1/4 inch, even though I am 25! I will take what I can get. Incidentally, my new doctor is 6'8!

The health issues you have sound similar to mine. Nausea and fatigue are my worst two symptoms. I am now seeing a chiropractor that finally seems to be in sync with natural health and what is actually going on. He is also open to the fact I may have Lyme complicating everything. At this point, he feels I have gut damage and am severely malnourished. Another wonderful thing about him is, he does not have a "here is a pill" mentality.

Sincerely,

Jin

[souzahanson]

Dear souzahanson,

It is truly sad how the medical system works. The tragedy is that doctors also tend to bully nurses into doing things that is not good for the patient. That is likely the reason I was treated the way I had been at IU Med. Nurses and Techs were terrified of this doctor. You should have seen their faces when I told them who my doctor was when they asked!

They would make this face automatically, as if it were a reflex. You know the "Oh God, not her" look? My mother worked at a hospital for nearly five years, and she got irritated by the doctors' attitudes toward staff members they saw as lower than themselves. I also am annoyed at the way a doctor will believe anything another doctor writes about a patient, just because they are a doctor! Doctors also will take up for another doctor even though they do not know them! This form of solidarity is absurd.

You are fortunate to be so tall! I thought I had half a chance, since my father is 6'2. I cannot help but wonder if I could have been tall had I been diagnosed sooner. At least I was luckier than Mom. She is only 4'11 1/2! I just recently grew 1/4 inch, even though I am 25! I will take what I can get. Incidentally, my new doctor is 6'8!

The health issues you have sound similar to mine. Nausea and fatigue are my worst two symptoms. I am now seeing a chiropractor that finally seems to be in sync with natural health and what is actually going on. He is also open to the fact I may have Lyme complicating everything. At this point, he feels I have gut damage and am severely malnourished. Another wonderful thing about him is, he does not have a "here is a pill" mentality.

Sincerely,

Jin

Jin,

Keep up the fight. Research, read, and Google everything. When I went to see my doc late last week I went with ammo in hand about lyme. He did not try and sway me away from the western blot test. He actually said I didn't need to make an appointment once my IgeneX lab req came in, he said just come in and he will sign the req. If you go in with knowledge and ammo, they'll get scared that you may want to sue and will usually cave in to your demands.

Another thought for those that have HMO insurance. The less you doc orders on you the more they make from the insurance company.

Based on my symptoms multiple sclerosis is also a consideration. I'll cross that bridge after and if my lyme results are negative. Check out wrongdiagnosis.com

[susieg-1]

If you did have a positive celiac test you have celiac disease. All my celiac testing was negative, so once I corrected my leaky gut by getting rid off the various bad bacteria there my food intolerances cleared up.

I take lots of herbs with my abx. I am on the Cowden Protocol (www.nutramedix.com). I also just listed all my supps today on the OMG thread, so you can see what else I take there.

With Lyme treatment, it's important to rebuild the immune system as well as get rid of the bacteria. The Dr. B guidelines linked in a previous post are GREAT.

I printed the guidelines today to give to my PCP and hope that she will read them. I have been very careful to try to follow them myself, eg. no sugar, carbs, no caffeine, alcohol, daily exercise and daily rest, I continue to improve and am having more good days then bad, not sure how long this will continue on my current abx but as long as I feel good then I will continue to put off seeing LLMD as my insurance will not pay. I will check out the Cowden protocol thanks for the website address!!

[susieg-1]

Susie,

Were you diagnosed with celiac by colonoscopy? I had a colonoscopy in 2001 and the GI said I had celiac disease. I'm guessing I do have celiac, because I didn't live in Maine till 2004. I was in Colorado from 1999-2001, Saudi Arabia 6 months of 2001 then back to Colorado, early 2004 to fall 2004 Maine, and have been in western Colorado till now.

I would almost bet ever penny I have that my IgeneX western blot will come back positive for Lyme.

The weird thing is that I glutened up at Burger King several months back with no real celiac symptoms?

I have a clinical celiac dx, had a colonoscopy at start of symptoms but no biopsy was done, all celiac testing has been negative, but I have not done genetic testing yet.

[susieg-1]

Susie,

I've done lots of research in the last couple days and I would refer you to the following link Open Original Shared Link. According to my hours of reading doxy will not solve your lyme problem if you are considered "Chronic", which you are based on your posts.

I will be doing my western blot through IgeneX early this week. I'm waiting on the lab reqs.

I agree completely!! But I cannot deny how good I feel now that I am on the doxxy at this point I am trying to heal with lots of H2O, magnesium, B12, Amino acids, omega 3, D3, rest, and exercise in addition to the abx. At this point I cannot afford LLMD and hope to not have to go that route. I will be checking the Cowden protocol for herbals to help in the healing process. Right now I am just glad to be able to sleep through the night and get up and be abe to weed my flower beds and do the word jumble in the paper without total confusion! One day at a time