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Omg...i Might Be On To Something


Rachel--24

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CarlaB Enthusiast

Laura, interesting ... I was diagnosed clinically for babesia. It's scary to think how much of it must be in the blood supply!


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AndreaB Contributor
Particularly interesting

That is interesting Laura.

If lyme and coinfections are so much ignored you have to wonder how much of the blood supply would be 'contaminated'.

I came across this story which again clearly shows that mercury is a factor in Autism...even though in most cases the mercury is not showing up in hair and urine in the initial tests.

That is sad.........for a 3 year old! I assume he had/has autism.

confusedks Enthusiast

My mom doesn't hate liver, but she doesn't love it either.

I ATE IT.....YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I had to plug my nose the entire time, but I got it down! I am impressed with myself! :P

truthsearcher,

I did that once. We also tried to puree it and my mom put it into gel caps and I had to take 20-40 at a time! It was SO GROSSSSS! And, you can taste it! LOL!

Kassandra

Ridgewalker Contributor
I ATE IT.....YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Kassandra

Woohoo!!! :D

Rachel--24 Collaborator
That is sad.........for a 3 year old! I assume he had/has autism.

Andrea,

I'm assuming he is no longer Autistic. :)

I started his treatments on his 3rd birthday, using a rudimentary version of the current TD-DMPS (DMPS in a transdermal base) that my partner, Dr. Dean Viktora and I had played around with a few years previously.

By the age of 41 months, 5 months after initiating treatment with the TD-DMPS, my son started to speak, with such rapid progression of his speech that his speech therapist was noted to comment how she had never seen such rapid progress in speech in a child before.

Today at the age of 5, Abie is far ahead of his peers, learning prayers in a second language, doing large mathematical calculations in his head, playing chess and already reading simple 3 and 4 letter words.

His attention span and focus was sufficiently advanced to the point of being accepted as the youngest child into martial arts academy when he was only 4.

His vocabulary is as extensive as any 10 year old

Rachel--24 Collaborator
I ATE IT.....YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Good job Kassandra!! :D

Never thought I'd say it...but.....YAY for eating the liver (and keeping it down)!! :lol:

NoGluGirl Contributor

Dear Kristina,

Thank you for the pate information! :) I think my father might like it. I do not know. He will eat liver, as I said. At least if I do not like it, he could eat the rest!

Dear Carla,

Babesia is terrible! I bet if I have Lyme, that will be my co-infection. I feel like I am going to passout all of the time. It is so scary! :unsure: I am so worried I will faint at my eye doctor appointment tomorrow. The only other thing I can figure is maybe I am getting migraines with all the other symptoms except pain on occasion and that is caused by my teeth. I know my grandmother on my mother's side used to faint from her headaches.

Dear Andrea,

I agree that Lyme is always overlooked. The blood supply probably has quite a bit of infected samples. If they went through and screened them, it would probably show a lot of Lyme and co-infections that they never dreamed would be present. You just never know until you analyze this stuff. Unfortunately, by the time they decide to do such testing, it is often too late for so many people! :(

Dear Kassandra,

I cannot stand the smell of food much of the time. Sometimes I am fine, and things do not bother me. Other times, the slightest odor of anything makes me feel worse. My body even aches along with it making me queasy. This can be very hard to handle at times.

I am glad you were able to choke the liver down! B) That is not easy to do! Strongly flavored things are not bad usually, but in liver's case, many people believe it is. I like garlic and onions, but I know many people that cannot stand the taste or smell of them. Taste is a very individual thing.

I just found that out about the emoticons a while back! :lol: Isn't it fun? You can play around with them. Some of them it is hard to tell what they really are saying. We were talking about that on the Silly Thread the other week.

Dear Laura,

Thank you for the Babesia article! ;) I think it would probably be my co-infection. The good thing is, since I live where I do, the other co-infections are not common around here. I have never lived anywhere else. That helps my situation.

Dear truthsearcher,

Thank you for the liver tips! In case I need to eat it for one reason or another, I will know what to do. Honestly, I think I would be better off getting iron from eggs and beef. I do better with that than supplements. They always irritate my stomach. No one in my family does well with iron supplements. I also like spinach, but since the E. Coli outbreak the other year, I have been scared to eat any!

Dear Rachel,

That is really great about Abie! Those stories are so wonderful to hear! I just wonder why more people are not open to this type of thing. It is a tragedy so many people blatantly refuse to try something effective to save their child from a horrible fate. A lot of individuals just do not want to acknowledge the truth.

So, basically what they are saying is, a chelating agent must be used to give an accurate test? Metals need provoked in order to be measured accurately? Is that what they mean? I know hair analysis tends not to be very helpful. That would explain why so many who cannot excrete are told their levels are fine. Just out of curiousity, how accurate are blood tests for metals?

Dear Sarah,

Hello again! How are you? Have you done any research on metals? I know that Lyme is scary. I am sure I have it, too. The frustrating part is finding a physician who knows how to read the tests once they are in. My doctor is reluctant to do the Western Blots, because she cannot interpret them. Even so, I am going to try to convince her to do them so maybe I could post the results on here and LymeNet for answers.

Sincerely,

Jin


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AndreaB Contributor
I ATE IT.....YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I had to plug my nose the entire time, but I got it down! I am impressed with myself! :P

YAY!!!!

:lol::lol:

I'm assuming he is no longer Autistic. :)

What a fantastic testimony to proper treatments. :D

Ridgewalker Contributor
Dear Sarah,

Hello again! How are you? Have you done any research on metals? I know that Lyme is scary. I am sure I have it, too. The frustrating part is finding a physician who knows how to read the tests once they are in. My doctor is reluctant to do the Western Blots, because she cannot interpret them. Even so, I am going to try to convince her to do them so maybe I could post the results on here and LymeNet for answers.

Sincerely,

Jin

Jin, you are so sweet and amazing to keep up with what's going on with everyone!

I actually kind of had a week of depression last week, as it sank in that there's such a strong possibility for Lyme for me. I am feeling MUCH better about it this week. Still having some anger issues with knowing now that the test I had all those years ago may have been inaccurate. Especially since you can pass it on to your kids, and also:

With increasing numbers of cases of transfusion-transmitted babesiosis being reported, protection of the blood supply is essential.

This issue here disturbs me terribly. I've given blood so many times over the past 11 years. It makes me wonder if this is one of the reasons so many people don't remember ever getting a tick bite. How many of those people had blood transfusions?

As for the Western Blots, I also was thinking about trying to talk to my regular doctor about it. She is an excellent, open-minded physician. But then I'm afraid to do that, because if it comes out positive, won't I then have trouble getting insurance? Are you going to try to wait till you have insurance to get tested, or are you going to go ahead and do it as soon as you can?

I haven't done any research on metals yet, other than what I read here. I spend so much time on the computer lately, I feel like my butt is getting flattened from the computer chair! :o

NoGluGirl Contributor

Dear Andrea,

If only more children received proper treatment! Can you imagine how many children would be well and happy? My mother's best friend is a bus aid on the EARC routes. She has a number of autistic children who ride her bus. Maybe I could suggest she talk to the parents about this? It could help someone!

Dear Sarah,

Thank you for the compliments! Keeping up with everyone can be a full-time job! It is worth it, though. Rachelville is a caring community like no other! This is a happy place for those distraught by illness and confusion. We work together to support and heal everyone.

Lyme is so elusive, so many of us never would have considered it as a cause for our depression or anxiety. :blink: I go through depressed states as well. Between my financial worries and my health concerns, being happy is quite difficult at times. However, since I have this thread, it has helped a lot. Everyone understands why I am scared, and what it is like to be so sick. No one else gets that.

Passing it on to your children is a big worry. Carla had five children who could have contracted it. You cannot blame yourself for making them ill. It is not like you got pregnant to pass on this illness! The same goes for donating blood.

There was no way of knowing the other test results were wrong. Trust me, blaming yourself never helps anything. I always have had a guilt complex about things that were not my fault.

All you can do is do what you can to fix it now. No one could fault you for something you had no knowledge of.

I am going to get testing done ASAP! Waiting for insurance may be forever. I am too ill to wait. I need help now! In all truth, IgeniX may not be covered by insurance anyway. Coverage varies from company to company, but so many try to get out of even the simplest claims.

I am seeing a holistic physician. She does not know how to interpret them, but right now just getting them run is the goal. I know Rachel, Carla and Donna can help me interpret them once I get them back. I trust them more than doctors anyway. Besides, they have the illness, so they know a lot about it.

I spend too much time at the computer somedays. The thing is, lately due to my bad eyes, doing much of anything on the computer is problematic. I use my contacts sparingly. I go to get new glasses tomorrow. :) Eyestrain really cuts down on your productivity.

I know what you mean about the butt flattening out! You know, if you are pear-shaped, that can happen! :unsure: I am pear-shaped, so I try not to sit for too long, because the pressure on my lower body will make it bigger. People shaped like me should never rollerblade, use a stairmaster, walk on a steep incline, or do spinning to lose weight. Those activities actually bulk you up! I wish I would have found out about that earlier, maybe I could have pared off more on my hips!

Sincerely,

Jin

Ridgewalker Contributor

Jin, thanks for the encouragement! I do struggle with my guilt complexes. :rolleyes: I think I inherited that from my mom (and her mom!)

Waiting for insurance may be forever.

I hear that! :( I've read a lot of your posts and see how sick you are. I wish there was something I could do to help! You know... I know I am an idealist, and this is naive, but-- you'd think testing for infectious diseases would low- or no-cost. I think they should be. :angry:

Yay, on the new glasses tomorrow! Eyestrain can cause massive headaches (as I'm sure you well know.)

Also-- to Kassandra (and anyone else who has info.)

I know that you have multiple bulged discs in your back.

I know that back pain is listed in the Lyme symptoms. But does that refer to muscle pain, or is Lyme actually associated with disc problems- bulged discs, herniations, degenerative disc disease, etc?

Other than fatigue, my biggest problem/pain over the past 10 years has been the herniated discs in my back. I was just wondering if there is a Lyme connection, or not.

confusedks Enthusiast
Also-- to Kassandra (and anyone else who has info.)

I know that you have multiple bulged discs in your back.

I know that back pain is listed in the Lyme symptoms. But does that refer to muscle pain, or is Lyme actually associated with disc problems- bulged discs, herniations, degenerative disc disease, etc?

Other than fatigue, my biggest problem/pain over the past 10 years has been the herniated discs in my back. I was just wondering if there is a Lyme connection, or not.

Sarah,

I am not sure about the connection. I know Rachel said there is a connection. I *think* the main reason I have 6 disc bulges is because I have a spinal disorder which causes the vertebrae to become wedges instead of squares, thus leaving not enough room for the discs to be there. This is why I have them, but Rachel even suggested that my spinal disorder is from Lyme. It is also possible that it's from undiagnosed Celiac.

Whatever the cause, they are the MOST painful things ever!!! I have tried all kinds of things, and nothing has worked. We are going to a surgeon on Halloween to see if I am a candidate for surgery. If he tells me anything to help with the pain I will pass it on.

I think the pain on symptom lists that they are referring to is muscle pain. I am not sure though. Again, for me the chronic back pain is because of the Scheuermann's Disease. Sarah, in case you want to know what that is, here is a link that explains it. Open Original Shared Link Of course, mine is in both my lumbar and thoracic spine. ;)

This is totally off topic, but I have had this tingly feeling in my left pinky and it is moving down my hand. It is very strange. Anyony ever experience this? It has been going on for at least 30 min. I even took a break from the computer and it hasn't gone away. :huh:

Kassandra

NoGluGirl Contributor

Dear Sarah,

You are welcome for the encouragement! ;) We should both stop feeling guilty about things that are not our fault! My guilt complex comes from my grandmother. She always was like that. Now she has Alzheimer's, so look what good that did!

In case we go senile later, we better spend what time we can enjoying things and not feeling guilty! It is one of the Ten Commandments of Thyself I wrote.

I always neglect myself. Everyone's petty desires come before my own basic needs. I am done with that! My mother called me self-centered when she used to have me leave the room when I had broncchitis so she could hear her stupid television show! :angry: I told her, if she wants a self-centered person, I will teach her one. Lately, I told her I would not be living up to my reputation for be self-centered if I brought her the magazine from the other room.

I do laundry for others a lot, on top of taking care of the dog while they are gone. If it were not for me being here, the dog would be all alone. No one will do dishes, either. They make four times as many. I also have to clean up after them. I cannot keep one lousy space clear with them around! Cleaning the fridge and putting the groceries away also are only done by me.

My idiot father and mother then complain I need to just go out and get a job, when they are constantly glutening me! Then, they wonder why my gut is not healing and I am still sick! :blink: Can you say DUH? OMG, how can I be related to these people? I am going to contact a disability attorney and see if he cannot get me out of here! I will never be well as long as I am in this house.

I appreciate the fact you want to help. You can pray for me. That is always good, and it is free! We can pray for each other. The issues I am having are quite miserable. I have better days sometimes. I suffered horrible stomach cramps in my colon most of today, and I suspect it was from the rice cakes, because they had melon seed flour. Seeds are difficult to digest.

Insurance is such a depressing thing. I agree with you, so maybe I am an idealist also. Serious diseases like Lyme should be little or no cost for testing. The U.S. government does not care about us. They have nice cushy pensions, great healthcare, and perks beyond our wildest dreams, yet people are starving in the land of plenty. :( Who cares? It is not their problem. That is how they look at it.

The glasses are hopefully going to be ready tomorrow. I cannot see worth a crap. I have my contacts in right now, but my eyes dry out no matter how many drops I put in them. I have no clue why. At least I should be able to afford more soon. My parents are paying for it, but I wish I could pay for it myself.

I think Lyme can be related to bone abnormalities. The list of things it effects is endless. You never would expect it to cause some of the symptoms it causes. I have Fibromyalgia, and it tends to be gone after Lyme is treated. I am amazed at all Borrelia Bergdorferi is responsible for.

Dear Kassandra,

I think muscular pain is most common. There may be a link to Lyme with the problems you are describing. I know Rachel had mentioned it in the past. I hope your appointment goes well with the surgeon. He might be able to help you. New procedures come about all the time.

The numbness is something I have as well. It is so strange! I felt like something was around my ankle the other day all day long! My toe felt like that the other day. I wonder what is causing that? Vitamin deficiencies can cause it, like for B12 and B6. I wonder if that is some of my trouble?

Sincerely,

Jin

confusedks Enthusiast

Jin,

It is possible. I know I am not vitamin b12 deficient. I actually never have been. This numbing is very worrisome. It is going up my entire arm. Eek! I just talked to my mom about it and she thinks I may have another disc bulge higher up in my spine. I wouldn't be surprised at all. :ph34r: It is kind of like a new bulge every month!!! LOL! I guess I have to laugh at these things.

I can totally relate to the depression that you mentioned earlier. It is really difficult to deal with so much and try to still be happy. My mom told me I needed to be happier and I could have died! I told her I can't think of any ways to be happy while I am in this state of health. It seems that every day I get some sort of new health problem that doesn't go away. I was looking forward to a nice break at Winter break, but i am going to have my wisdom teeth taken out and I have to be at school for 4 days from 8-3 for labs for AP Bio. It is just NON STOP!!! I get it!

Kassandra

AndreaB Contributor
I actually kind of had a week of depression last week, as it sank in that there's such a strong possibility for Lyme for me. I am feeling MUCH better about it this week. Still having some anger issues with knowing now that the test I had all those years ago may have been inaccurate. Especially since you can pass it on to your kids, and also:

I'm glad you're feeling better this week. You had no way of knowing the tests could be negative, so please don't beat yourself up about it.

I hear you about the chair shaped bottom. :lol:

If only more children received proper treatment! Can you imagine how many children would be well and happy? My mother's best friend is a bus aid on the EARC routes. She has a number of autistic children who ride her bus. Maybe I could suggest she talk to the parents about this? It could help someone!

I just read about cell phones and children on Mercola's site. :( We had cell phones when Talitha was little. She used to 'talk' to her daddy on the phone all the time. They say it takes 10 years for cancers to start showing up......I hope with the treatments we had done already that we won't be in trouble there. Since children's skulls are so much thinner they are much more prone to problems due to cell phones. ADHD can also be linked to them.....just on more thing huh? Mercola also believes that cell phone usage contributes to autism as it makes the body more prone to metals from vaccines.

Here are some excerpts.

We are in a geometric explosion of cell phone use, which is causing the following problems:

Damaging cell membranes

Decreasing intracellular communication by disrupting microtubular connections that allow biophotons to communicate between cells

Increasing deposits of heavy metals into your cells, which increases intracelluar production of free radicals and can radically decrease cellular production of energy thus making you incredibly fatigued

A study back in 2004 also found that your risk of acoustic neuroma (a tumor on your auditory nerve) was nearly four times greater on the side of your head where your phone was most frequently held, compared to the other side which appeared normal. This risk manifested after using a cell phone for the amount of time specified in the current study: 10 years.

NEVER Hold an Infant While Talking on Your Cell Phone

This study is pretty clear; the density of the child

NoGluGirl Contributor

Dear Kassandra,

The B12 thing is not uncommon in Celiacs from what I hear. My doctor thought of that originally the first time I saw her. Affording lab tests is the trouble. Blood tests can be over $300! :o One thing that was nice before I turned 23 and my father's insurance was United Healthcare during the time he worked for IBM, all testing was covered in full.

I would not be surprised if your numbness was caused by another bulging disc. Those cause all kinds of strange and painful sensations. :( I wonder if the low ferritin has something to do with it? I did some research on low ferritin and iron metabolism. There are many things that can interfere. One bright side is, I found that low ferritin disproved the possibility of liver disease in a patient.

Bilirubin being high can be linked to liver disease, but also anything having to do with that body system. Gallbladder trouble is one more thing that tends to be related to that. I am curious about the possibility that the iron not being able to be carried properly due to the lack of ferritin has the iron sitting in the liver, and maybe causing the high bilirubin? It is just a thought. Perhaps you could ask your doctor about it the next time you see him.

Don't you just love when people talk about depression and how easy it is to deal with? :rolleyes: Other people have no idea what it is like to worry you are dying and it will be too late by the time they find out what is going on. More symptoms popping up out of nowhere is such a heavy burden. It makes doing the slightest thing exhausting and worrisome. Going to the eye doctor is no big deal for most people, but with my health issues, it is very hard for me to get there.

Having your wisdom teeth out on winter break sucks! You are like me, you never get to relax! :angry: How are we supposed to ever get well being stressed all of the time? Why do things always have to run together? Finals and wisdom teeth are way too much for even a healthy person to deal with!

Dear Andrea,

I sure am fascinated by Mercola's article! I knew cell phones have been linked to brain tumors and such. There are devices to help divert the waves away from you. I think it negatively effects our EMFs. This type of disturbance can have many consequences.

T hopefully does not have ill effects from exposure. The trouble with plastics could be causing her issues. They are hard to avoid. As far as soy goes, I can tell you I have to watch overdoing it. I have a lot of estrogen, and I get hotflashes when I have too much. One bowl of cereal with soymilk is fine, but no more.

Puberty is best not started until later. I actually started later than others my age by a year or two. I assume the Celiac had to do with that. My best friend did not start until she was fifteen. Being on Ritalin might have been why.

I am sorry M has plastic issues as well. I hope I don't! I love RubberMaid, Ziploc and Gladware. I am not sure I could live without it! :lol: My brother and I both have this obsession with plastic storage containers.

Being depressed about the cost of things is probably common. Those of us who do not have insurance or good insurance are the ones who have a higher instance of it. Money makes the world go round. I am so tired of hearing people say that money cannot buy happiness. First of all, it is always the rich people who say that. You can tell these people have never been without insurance or worried about affording food!

Sincerely,

Jin

melmak5 Contributor

Kassandra - I am glad you got down some liver and found my letter comical. I had 7 bms yesterday, and I feel like new human being today. (besides the mild migraine... but apparently not all of my body can be functioning properly all at the same time... yet)

I think it is amazing that a person can have daily bms but still be that constipated. Everyone laughs at me, but I push fiber on all my friends and tell them HOW important water and good poops are. I feel like, if nothing else, I am on a campaign for regularity!

Think about every person you run into on daily basis with a scowl on his/her face. I would bet 9/10 of them are constipated.

NoGluGirl Contributor

Dear Kristina,

My body is the same way. If one thing is working right, something else is not. :( I have no idea why our bodies have to be like this. Regardless, it drives me nuts! It would be nice for something to improve while nothing else gets worse.

It is odd how you can have many BMs and still be constipated. Detox helps push that stuff out. Enemas were a part of my life when I was young. Fleets were the only thing that helped the C sometimes. Today, I have had horrible stomach cramps for the second day in a row, and feel like stuff is trapped in there despite having D. :blink: I think I ate too much fat.

That Reese's Halloween candy is so hard to abstain from. :ph34r:

I agree that being constipated puts you in a bad mood. It is difficult to be happy being full of crap! :lol: That is the truth!

So, when you say someone is full of it, this very well could be true! You never know! :o

Sincerely,

Jin

Rachel--24 Collaborator

We had an earthquake!! :o

It was the first one I've really felt in several years. It was big enough to make me run for the door.

It was 5.6...I guess the epicenter was right here in San Jose.

I'm kind of scared to go to bed now. :ph34r:

AndreaB Contributor
We had an earthquake!! :o

It was the first one I've really felt in several years. It was big enough to make me run for the door.

It was 5.6...I guess the epicenter was right here in San Jose.

I'm kind of scared to go to bed now. :ph34r:

Hope everything is ok tonight. Usually if there are aftershocks they are less than the original. Our last bigger quake up here was when Talitha was just over a year. I think it was 7. something. Caused a lot of damage to buildings in the city (Olympia) clear up to Seattle.

confusedks Enthusiast
We had an earthquake!! :o

It was the first one I've really felt in several years. It was big enough to make me run for the door.

It was 5.6...I guess the epicenter was right here in San Jose.

I'm kind of scared to go to bed now. :ph34r:

Eek! I am so afraid of earthquakes...it is ridiculous! I hope you stay safe.

Tomorrow at school, we are having a Halloween contest, I am dressing up as Pocahontas! :D I haven't dressed up in years, so I figured why not? YAY! I will post pics if I have time which I should since I have too much homework to go trick or treating...and I couldn't eat the candy anyway! ;)

Kassandra

Rachel--24 Collaborator
Tomorrow at school, we are having a Halloween contest, I am dressing up as Pocahontas! :D

Have fun at school today Pochahontas! :)

miamia Rookie

Rachel-

sorry about the earthquake- hope you got to sleep and are alright.

Ok i have been feeling really bad I feel like i might be reacting to one of my supplements even though i have tested ok for all of them . I decided that i am going to go off everything for a week adn see how i feel and then slowly introduce things. I really hope this helps.

miamia Rookie
Eek! I am so afraid of earthquakes...it is ridiculous! I hope you stay safe.

Tomorrow at school, we are having a Halloween contest, I am dressing up as Pocahontas! :D I haven't dressed up in years, so I figured why not? YAY! I will post pics if I have time which I should since I have too much homework to go trick or treating...and I couldn't eat the candy anyway! ;)

Kassandra

I can't wait to see the pics. When i get better I am going to dress up every year. Today i have to do my nieces make up and i am taking her to get henna tatoos she is going to be princess jasmine

jerseyangel Proficient
We had an earthquake!! :o

It was the first one I've really felt in several years. It was big enough to make me run for the door.

It was 5.6...I guess the epicenter was right here in San Jose.

I'm kind of scared to go to bed now. :ph34r:

Rachel--I'm so relieved you're ok! We just got hooked up for cable and internet last night, and I heard about the earthquake this morning on the news.

I'm up to my neck in boxes, but we're here! :D Hi to everyone, and I will catch up later :)

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      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
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