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Omg...i Might Be On To Something


Rachel--24

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jerseyangel Proficient
Hey Patti! My kitty is back! :)

Yes :D He came back in support of Susie's dog, Annie, who had a health scare. Happily, Annie is ok :) Even so, Allo decided to stay a while :P


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Rachel--24 Collaborator
Kassandra, thyroid levels are very complex to interpret from what I understand. But what I got from my doctors is that besides the lab levels, symptoms are important. A really important symptom is your basal body temperature. Take you temp every morning when you wake up but before you get up. I forget how long, and it has to be a certain time during your menstrual cycle. Low temps mean you need thyroid. Maybe doing BBTs for awhile will help your doc decide what to treat.

Low thyroid is connected to celiac for sure.

Just repeating whats already been said....the labs dont always tell the whole story. Check your basal temp.

My labs have been stable for over 3 years now....my basal temp is good at 97.7 but I also notice that when I eat foods which cause reactions (oxalates and mold?) my basal temp goes WAY down!! :o

Your TSH is actually looking really good. Its not likely that any Dr. will prescribe thyroid with your TSH already more toward the hyper end. If by chance you do try it at some point....just be careful you dont start getting symptoms of overactive thyroid.

A high TSH = Hypothyroid

A very low TSH can be Hyperthyroid

Before my thyroid got nuked my TSH was usually really low...well below 1 and in the hyper range.

After my thyroid got nuked my TSH shot up to 25.5!! :o

That was extremely hypo.....anything over 2 and you might benefit from some thyroid. I'd be careful in your situation. The symptoms might be caused by the adrenals and other issues.

I've had hypothyroid symptoms throughout my illness but they're not being caused by my thyroid. I used to increase my Armour thinking I could eliminate some of the symptoms. It never worked for me....it would just cause me to become hyperthyroid....then I'd end up with those symptoms on top of everything else.

Rachel--24 Collaborator
Yes :D He came back in support of Susie's dog, Annie, who had a health scare. Happily, Annie is ok :) Even so, Allo decided to stay a while :P

Patti...what happened to Annie??

I'm glad to hear she's doing ok....hope Susie Q is doing well also. :)

AndreaB Contributor
Yes :D He came back in support of Susie's dog, Annie, who had a health scare. Happily, Annie is ok :) Even so, Allo decided to stay a while :P

Yah, what happened to Annie?

I assume she's posting on the Funny thread.

jerseyangel Proficient

Rachel--

Annie had a couple of suspicious lumps. After further testing it was determined that it was not cancer. Annie is home recovering from the whole ordeal. :) As is Susie ;):D

CarlaB Enthusiast
Carla,

Had you said that Bragg's Apple Cider Vinegar was alkalizing? Or was that just the lemon juice that was?

I was reading on a different site where a person had written about adding baking soda to ACV to neutralize it more. I think that made my bladder infection worse again. Otherwise the Oil of Oregano is working better than the ACV. I supposed to take the oil 3x a day and so far have only had it 2x.

Trying to figure out alkalizing which is going to be challenging on our short food budget. Doesn't help that our water is acidic. I'll use a test strip with that when we replace the filters in the next month and see if that makes a difference.

I can't see how baking soda would help the ACV to alkalinize you more .... ACV is acidic, as is lemon juice, but they both alkalinize your body. I would think that the baking soda would neutralize the vinegar and make it ineffective ... but that's just my own line of thought, I haven't researched it ... just putting my college chemistry class to work, LOL.

I think that the oregano has abx properties to it, but not sure .... that might be why it's helping your bladder infection more than the vinegar.

You can actually add a tiny bit of ACV to all the water you drink so it's not so acidic. :)

CarlaB Enthusiast

I just Googled oregano oil, and it does appear that it is an effective abx. :)


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AndreaB Contributor
I can't see how baking soda would help the ACV to alkalinize you more .... ACV is acidic, as is lemon juice, but they both alkalinize your body. I would think that the baking soda would neutralize the vinegar and make it ineffective ... but that's just my own line of thought, I haven't researched it ... just putting my college chemistry class to work, LOL.

I think that the oregano has abx properties to it, but not sure .... that might be why it's helping your bladder infection more than the vinegar.

You can actually add a tiny bit of ACV to all the water you drink so it's not so acidic. :)

Thanks Carla. :)

My infection came back harder today. I'm back on the Pau d'Arco (just read that's supposed to help) as well as the Oregano Oil. If I continue taking the ACV it will be without the baking soda as I think that made things worse. That combo is recommended for acid reflux, which I don't have, but I figured I'd try it. I was only off the Pau d'Arco yesterday, thinking I didn't need both the Pau and the Oil.....

CarlaB Enthusiast

Andrea, I can't remember, have you been to the doctor for this? You might need abx, bladder infections can be quite serious.

AndreaB Contributor
Andrea, I can't remember, have you been to the doctor for this? You might need abx, bladder infections can be quite serious.

Nope. I called my doctor. He recommended cranberry juice, lots of water. Said if I still have it when I bring Seth in on the 6th they'll run a test to see what the problem is and go from there.

I just had a cup of cran juice a couple hours ago. I need to get going on the water for today, only had about 2 cups.

If I don't get a handle on this again then I'll call my doctor again tomorrow. There is blood mixed in now, so I'm a little more concerned.

jerseyangel Proficient

Andrea--

I'm concerned about you with the blood--I think you need an antibiotic. Please call tomorrow :)

CarlaB Enthusiast
Andrea--

I'm concerned about you with the blood--I think you need an antibiotic. Please call tomorrow :)

I agree ... and you need to drink constantly!!!! Wash it out!

Rachel--24 Collaborator
Andrea--

I'm concerned about you with the blood--I think you need an antibiotic. Please call tomorrow :)

Andrea....I agree. You should call the Dr....the blood showing up concerns me too. :(

NoGluGirl Contributor

Dear Kassandra,

I am so glad you got your 504 aid! :) I was pulling for you! In all truth, according to Disability Act 504, schools, which I would think includes high schools not just colleges, are required to accommodate individuals with Celiac. By law, this is a requirement. If the school goes back on the agreement in any way, you can take legal action. Keep this in mind! ;)

Your thyroid might be slow. It is important that doctors know how to interpret the test results. Endocrinologists are better for that type of thing. My thyroid actually started out hyper, so I was put on a low dose of Levothyroxine to fool it into slowing down. The trouble was, it slowed down too much. So, then I had to take medication to make it speed up again.

Unfortunately, the medication had some not so good side effects, and I was still not losing any weight. I could not sleep, had heart palpitations, and some other things going on and had to stop the medication. I decided to go the herbal and dietary route. Certain foods slow the thyroid, such as refined carbs and sugar, broccoli, peaches, and peanuts. Just one Ashwaghanda capsule and Rosemary Leaf Extract capsule daily along with adding coconut oil to my diet got me losing weight and feeling better within two weeks. Now my thyroid is hyper again.

That figures those idiots at the doctor's office forgot about your bloodwork! :angry: What is it with these people? They just cannot get it together! As far as your results go, you certainly look as though your cholesterol is bad. An underactive thyroid is like that. I had no idea there was a connection between it and ferritin, though.

I will be anxious to hear about the Lyme testing. When is the blood draw for it? Is it soon? I am going to mail the information to my doctor, and highlight the most important stuff. That can save her time, and get me on the fast track to wellness.

Dear Patti,

I know what you mean about reacting to every food you eat. Was yours like mine, where you could eat something one day, but you could not the next? I hate that! A rotation diet might fix this trouble. I just do not know how to do it without going broke.

A Rachelville reunion would be terrific! I could make purple glittery bat pens for everyone! That would be nice! I hope to win the lottery as well. Sometimes it happens! You know there is this senator who has won three times? Do you have any idea what the odds are of that?

Thank you for the compliments on my artwork! All I can do is submit and see. One thing is for sure, I am definitely protecting my work. No one is going to steal my ideas and get away with it. The submission form pretty much states that they are not responsible for any future characters that resemble yours or your writing.

You are welcome for the well wishes on the move! :) It is Saturday, right? This will likely be an adjustment getting used to Pennsylvania after living in New Jersey. The weather is at least close to the same. That helps make the transition easier.

The headaches probably are irritated by the eyestrain. It tenses up my whole eye area and above my nose. You know that cold knife in the forehead feeling? I get that pretty often. I know the teeth are causing the neck stiffness and pain as well as the migraines.

Dear Kristina,

I am sorry to hear you were so sick the other evening. I know what that is like. My gallbladder did that to me. Do you get dry heaves that are so brutal it makes your lower back hurt? The chest pain is common in gallbladder problems. It can make you feel like you are having a heart attack. After you belch, it can feel somewhat better.

The cashews and potato chips are high in fat, and the gallbladder will react badly to them. I used to get horribly sick from potato chips. I know how hard this is. I have a lot of please kill me days, too. :( If you have fungal issues like yeast, that will also be aggravated by the cashews and the high carbohydrate content of the potato chips.

I am glad to hear your roommates respect your needs. I wish I could say that for my roommates. Unfortunately, when they are your parents, there is not much you can do except be paranoid careful. Even then, I have been glutened every now and then. I fear my intestines are not healing because of it.

Thank you for telling me about the new glasses! I know that my eyes are very strained now. Even my old glasses are not doing the job like they could be. I do get double vision from my Thyroid, but normally that is not so hard on me. It is the being myopic that is the more problematic issue right now.

Dear Donna,

Alright, now more allergy shots! :D That is such wonderful news! Now you do not have to deal with those anymore. There is one less stressful thing. I am so happy for you!

Pumpkin pie lust is difficult to manage! I sure could use some! I am going to make Thanksgiving dinner for my brother and I this year. It is so exciting! Freeze those slices so you can have them all the time! :lol:

Lyme seems to be really hard on the entire endocrine system from what we have discussed here. There are so many things that it can mess up. Between the adrenals and the thyroid alone, there are extreme issues. Every single part of the hormone system is involved with another in some way. That is why trying to treat it is so hard.

Dear Susie,

Here I am! I was reading along. Taking care of the dog was consuming some of my time. The rest involved housework, phone calls, and various other things. You know how that goes! No rest for the weary!

At least you are off until next Wednesday! Hooray for relaxation! Is your son doing better? I recall he was feeling poorly. I hope he is better now.

Fennel tea sounds like it could be helpful. I will keep it in mind. My stomach is never happy. Lemons are on our running list this week for the lemon water. Every little bit for detox helps!

Little Dart is doing great! He runs around like a monkey on acid. You would never suspect he had surgery Friday of last week. Speaking of, as soon as I get finished on here, I need to feed him again. He is probably very hungry!

Maybe you will get to call Foresight before the weekend. I hope you can. They might be able to answer your questions. Detoxing can do some odd things to you at first. I know constipation is not uncommon.

You have an appointment with Dr. Peatfield? That is great! When is it? I will be anxious to hear about how it goes. This doctor really appears to know their stuff!

The issues with the stomach sound the same for me as you and Kristina. Getting anything done is difficult feeling this way. The moldy cashews may be what made me so ill for a couple of days this week. I ate a bunch of mixed nuts for a couple of days, and on top of that, it was raining all week! No wonder I have had such a rough time!

Dear Julie,

Pumpkin bars sound so good right now! I need to make some brownies or something. I really need to be good with the sugar, though. I am doing better. Avoiding sugar for Halloween is tough. Reese's Peanut Butter Cups are one of the kinds I like to hoard.

Reacting to all food seems to be my case anymore. Ever since those antibiotics last year, I have had that trouble. Bacterial dysbiosis and all kinds of other issues are a possibility. I may even have all of the things on the list I made as possibilities! Since many of the conditions tend to accompany each other, it would not be a surprise.

Dear Rachel,

I guess you have not been able to get an appointment with Andreanna yet. At least you have one with Amy! That is good. Your appointment is the 15th, two days after my tooth extraction. I am glad you will get to go see her.

Eating foods on consecutive days is a problem for me as well. If I eat the same things two days in a row, I often do not tolerate them. I have no idea why. This is just how it goes for me. That is frustrating, too.

I never thought about cashews being moldy until you guys mentioned it. That would explain the horrible gut pain for two days. It appears I have a threshold. I can eat a serving, but no more. The fat is some of the trouble, but the mold probably is adding to it. Having Candida makes it impossible not to react to any form of mold.

Going to Washington will be neat! Have you ever been there before? I think a cousin of mine lives near the border of it and Oregon. I am not sure if he is still there, though. He might have moved again. How cool is it that Andrea can be your chauffer?

I am not surprised about the environmental sensitivities being such a problem is children. That was a great article! Thank you for the link! It is worth sharing with some others that I think would be interested. I am going to e-mail them the link.

Maybe your pink days are not numbered. Pink can go anywhere! Things will be okay. You will see! Everything may not be perfectly rosy, but pink is there for you!

Wow, I never thought about mercury being in forrest fires! :o What a fascinating article! Who expected that? Isn't it amazing? I feel so sorry for people living in those areas. Thank you for the information you posted on this as well! This is probably an exposure factor that is overlooked.

I know what you mean about wishing you listened to your intuition. Doctors and everyone else around me convinced me I was crazy. I am so angry now. People make me sound like a hypochondriac, while I was right in the first place! :angry:

They had no right to do this or judge me this way. Even worse, listening to them nearly killed me!

Dear Charlie,

I never heard anything bad about flax and Lyme. Although I have not seen any of it on LymeNet, I may have looked in the wrong place. Trying it is really all you can do anyway. I have taken flaxsee oil in the past and did okay. Spectrum is a good brand. They have so many great products! Let us know how you do!

Dear Mia,

I hope your colon therapy and chelation went well the other day. It is good to know Vitamin C is not tolerate much of the time! Now you and Rachel can feel more normal! In case I have to deal with that, I will know it is alright not to have it in the IV. Most of us feel so weird and out of place because of our health battles.

I can look up some information for you on plant sterols. Are you sensitive to them? I know I have heard of them. I will do some poking around. There is bound to be some good information somewhere.

That is great about more coming out in your foot baths! This means more toxins are leaving your body. The merkier the water, the more encouraging it is. It is not great that you had so many toxins in your body, but it is good they are coming out. Obviously, your approach is working!

Getting the foot bath machine probably will pay for itself over and over! Those things are neat. I wish I could afford one. Maybe someday! That should be added to my "When I Get Rich" list.

Dear Carla,

I will keep the Namaste Blondie mix in mind for Pumpkin Bars! I do not know if I will be able to afford to buy it very often, but for a rare treat it would be nice. I mostly have to make my own stuff. We are on a tight budget. Since Dart had to have emergency surgery, that complicated matters further financially.

Thank goodness that stomach pain of yours is finally going away! Stupid bacterial dysbiosis! :angry: How annoying is it? I am not sure if that is my trouble or not. Truthfully, in my case, it is probably a part of the big puzzle. A cluster of issues are likely wrong with my system.

I am going to see if they have cacao nibs at the healthfood store. They may have them. Maybe I will get some agave nectar as well. Mom should go with me. Dad always tries to talk me out of things I need. He is so annoying. I told him he is waiting in the car next time, or he is not allowed to come in with me!

Lyme really does make the thyroid have issues. Thyroid problems are there due to Celiac for some people. However, I know my thyroid is now hyper again. It began hyper, got slow, then got hyped up again. The trouble with Thyroid Disease is, your thyroid will always be one or the other.

Arctic oils seem like a great thing to have. I am afraid to take any form of fish oil. My system does not like oil in general. My gallbladder surgery is the cause of that. Thank you for the link to the site. I will keep those in mind if I get brave and am able to try some fish oil supplements!

I had no idea ferritin levels could be related to an underactive thyroid. This is not something I ever read about. I wonder why they never mentioned it on some of the sites I saw. Maybe it is not well known. Regardless, at least I know now!

My regular basal temp was the same as yours! Sometimes it was lower, though. I had taken my temp once, and it was only 95.8 or something like that. The nurse at my doctor's office said that it was impossible, but I think she was wrong. She said I would have been dead. Apparently not!

Do you think Oil of Oregano would help my tooth infection any? I bet it would burn. It is a natural antibiotic, but probably is not meant for putting on your gums. That would be painful! I cannot get into the dentist for a while, and I am worried about needing antibiotics, but with the yeast, do not know what to do. I feel like this is a no-win situation.

Dear Andrea,

That is awful about T and M having issues with the plastics. Those are difficult to avoid. Plastic is everywhere. I can see why you had to switch back to the sippy cup! I hope I am not sensitive to plastics.

Your tentative series is soon. What exactly is that? Is that like what you had for ASYRA testing? Or is that something else? I do not know what that means. I was curious, because I thought it might be something different than what we have discussed previously and did not want to be out of the loop.

It is so sweet of you to want to act as chauffer for Rachel! You would be a great guide! Rachel will have her own personal taxi driver! Plus, you guys get to meet! Thank goodness you were able to cancel that other appointment.

Lead is definitely not good to ingest. I can see why your husband would want you all to avoid that. The trouble with lead is, you can have it in so many things besides pipes. Lipstick can have it, as do candle wicks. If you are not swallowing it, you may be inhaling it!

I hope Seth's 2-year check-up goes well. It is hard to believe he is already going to be 2 years old. Maybe there will be encouraging news. The doctor you have sounds like a good one. Availability is very important with pediatric doctors.

If I had to guess, I would say my body is acidic as well. I thought it was interesting that you mentioned water. I was just speaking to a woman about PH Balanced water. I can e-mail you the information if you like after I take a look at it. It would be nice to be able to afford the least expensive unit, but doubt my father would buy it even if we had the money.

Apple cider vinegar is something I would not chance! I do get reflux, but am not sure that would do me any good with the Candida. Cranberry juice is terrific for bladder infections. I have used it as well, or whenever I think I am getting an infection. You know what is better? Unsweetened blueberry juice is the best.

Finding it may not be so easy, though.

Blood being mixed in is serious. Checking it out is a smart idea. Going to the doctor might be necessary. The infection can move up into your kidneys if left unchecked. That can be dangerous.

Kassandra very likely has a hidden cause of illness. There are many possibilities. Lyme is a good contender. Since she attended camp, that increases her risk. Other issues may accompany it, but that and co-infections may be causing the majority of her issues.

Dear catesfolly,

Sluggish thyroids are difficult to diagnose, as you said. Half of all women with a slow thyroid are told that their levels were fine, when they were actually low. So many women are borderline at the very least, yet doctors do nothing to treat them. This can wreak havoc on your cholesterol. Triglycerides can be raised when the thyroid is slow.

Dear Sherry,

Kristina might be having delayed reactions. Some people take a while to react. I always seem to react pretty quickly. Twelve hours is the longest it ever has taken me. Everyone's system is different. I know others on the forum said they become ill two or three days after being glutened. Donna mentioned having delayed reactions to what she is sensitive to as well.

Sincerely,

Jin

P.S. Andrea, you did see me reading! You are right!

CarlaB Enthusiast

Jin, I don't know if the oregano oil would help with the tooth infection or not. Couldn't hurt to try it.

jmd3 Contributor
Most likely the corn is a compounded reaction from the original Gluten Intolerance. You should get over the reaction as you heal. Unfortunately, that will take 3-6 months, so be patient and be very careful what you eat in that time period, especially when you start felling better. I was having the same issues with food intolerances for a long time until I figured that out. It was one thing after another. Everyone I know takes Nutric Labs products for rapid healing. I personally use 3 of them, but the ones that will benefit you are their Nutric Life Extends (repairs DNA and cells... also a great heavy metal detoxifier). This will definitely help your healing time, to where you can introduce corn and others that you weren't reactive to in the first place. You will eventually be able to introduce Gluten as well. You will probably be reactive to it forever, but with the healing you will be able to tolerate certain amounts without any reaction. Also, Nutric V-Daily is great for added nutrients. It's a multi-vitamin that is absorbed under the tongue, works great! Those products do not contain any Gluten or Corn. Good Luck!

ALL of your posts have been about this product - It is great if you are trying to help us, but I was told it has wheat grass in it....that is a no no for celiacs

Green12 Enthusiast
Most likely the corn is a compounded reaction from the original Gluten Intolerance. You should get over the reaction as you heal. Unfortunately, that will take 3-6 months, so be patient and be very careful what you eat in that time period, especially when you start felling better. I was having the same issues with food intolerances for a long time until I figured that out. It was one thing after another. Everyone I know takes Nutric Labs products for rapid healing. I personally use 3 of them, but the ones that will benefit you are their Nutric Life Extends (repairs DNA and cells... also a great heavy metal detoxifier). This will definitely help your healing time, to where you can introduce corn and others that you weren't reactive to in the first place. You will eventually be able to introduce Gluten as well. You will probably be reactive to it forever, but with the healing you will be able to tolerate certain amounts without any reaction. Also, Nutric V-Daily is great for added nutrients. It's a multi-vitamin that is absorbed under the tongue, works great! Those products do not contain any Gluten or Corn. Good Luck!

ALL of your posts have been about this product - It is great if you are trying to help us, but I was told it has wheat grass in it....that is a no no for celiacs

It is also not good to advise celiacs to reintroduce gluten

Green12 Enthusiast

Andrea, I am also concerned. I do hope you talk to your dr., keep us posted and take good care of yourself

:wub:

AndreaB Contributor

Thanks everybody. :) I'm doing a little bit better now. I'll still call the doctor tomorrow and see what he says, but I'm hopeful the cranberry juice along with the Oil or Oregano and Pau d'Arco.

confusedks Enthusiast

Carla,

I am actually no longer on the pill for my periods. I went off about a month ago and knock on wood everything has been okay since. So, how would I do my temp? I have never done it before. We have one of those ear ones, would that work or would it have to be a "regular" one?

Jin,

Thanks for the congrats! I appreciate it a lot. :) I had been wondering where you were too! Glad to see you back.

Rachel,

Thank you for the input on my thyroid. Part of me is hoping it's my thyroid because if not, something crazy is going on in my body for me to be that iron deficient. It is pretty outrageous.

Andrea,

I hope everything is okay! <_< Keep us updated.

Everybody,

I am going to the Dr. tomorrow instead of Saturday. He is very worried about my blood work. I will keep all of you updated. I also went to the dentist on an emergency basis because of my wisdom teeth coming in and they are so painful. He told me I need to have them removed ASAP. We are going to call an oral surgeon he referred me to, so we can see what they want to do.

Warning...*MAJOR* VENTING ahead:

Even with the 504 I am still having problems with teachers. They are just so mean! It doesn't seem to matter about the 504, they respect it, but are really rude to me about extensions. The entire class was given an essay prompt on Friday, but I wasn't there Friday or Monday or Tuesday (we were in the 504 meeting!) and then I returned yesterday and my teacher wanted me to turn it in today. I told her that it wasn't fair and I needed extra time (or just the same amount of time as everybody else) and she said, "well, do whatever you need to do!" in a sarcastic tone. It is just so frustrating to go through the stress of my health and then to go to school and have the wrath of my teachers. :o Sorry, just had to get that off my chest. :)

Kassandra

confusedks Enthusiast

One more thing, I was totally symptomatic before I went to Celiac Camp. It turns out I got a bite (we thought was a bug) and the site of the bite was so bad, we almost went to the ER. This was about 6-7 years ago. I looked at pictures of Lyme/tick bites and it looked exactly the same. So I would say stress triggered it for me.

Kassandra

CarlaB Enthusiast

Kassandra, if the ear thermometer is accurate, you can use it. Take your temp starting about day 6 of your cycle for a few days, first thing in the morning before you get out of bed.

Sorry about the teachers. Maybe your mom can talk to them for you ... or maybe you can. They should be more understanding .... you don't need that stress.

Now I'm highly suspicious of Lyme! A bull's eye rash is diagnostic for Lyme .... do you have any pictures of it? I'd see if you can get to an LLMD. I know some will work with you if you have financial problems ... Dr. J does, but he's all the way in CT, maybe someone closer to you will be willing to work with you.

AndreaB Contributor
I am going to the Dr. tomorrow instead of Saturday. He is very worried about my blood work. I will keep all of you updated. I also went to the dentist on an emergency basis because of my wisdom teeth coming in and they are so painful. He told me I need to have them removed ASAP. We are going to call an oral surgeon he referred me to, so we can see what they want to do.

Can't wait to hear about your appointment tomorrow.

I'm sorry to hear about your wisdom teeth. My new dentist doesn't believe that wisdom teeth need to be removed in most cases. I had mine removed when I was around 20, although they weren't bothering me as they were still impacted. It's just a common thing to remove wisdom teeth these days. If they are erupting they are going to be painful, just like when a baby/child teeths. My husband has his wisdom teeth, all erupted, except one that was removed a few years ago due to a cavity just below the gum line or around the gum line.

That's really annoying about your teachers. I hope things can get straightened out.

One more thing, I was totally symptomatic before I went to Celiac Camp. It turns out I got a bite (we thought was a bug) and the site of the bite was so bad, we almost went to the ER. This was about 6-7 years ago. I looked at pictures of Lyme/tick bites and it looked exactly the same. So I would say stress triggered it for me.

Kassandra

That sounds highly suspicious to me too.

Rachel--24 Collaborator
One more thing, I was totally symptomatic before I went to Celiac Camp. It turns out I got a bite (we thought was a bug) and the site of the bite was so bad, we almost went to the ER. This was about 6-7 years ago. I looked at pictures of Lyme/tick bites and it looked exactly the same. So I would say stress triggered it for me.

Wow Kassandra....this does make Lyme seem more likely. I guess I missed that you'd been bitten by something if you posted that before?

Were you meaning to say that you were "asymptomatic" before camp?? Did you have no symptoms prior to that?

Were you having problems with your spine before you got that bite?? I think I probably mentioned it before but Lyme can definately cause problems with the spine.

I think its important for you to get properly tested and evaluated by an LLMD.

If you do have Lyme I would highly suspect Babesia as well. That could be the cause of your iron deficiency. Babesia eats iron. Its a parasite....the most common co-infection in those who have Lyme. It could be causing you more problems than the Lyme itself.

This is a link to an interview that Dr. Klinghardt did....its a very long interview...lots of info on infections (candida, lyme etc.), heavy metals, etc. If you fast forward to 1 hour, 11 minutes and 20 seconds (1:11:20) there is a caller who has been diagnosed with Lyme and has low iron.

Dr. Klinghardt explains to her about Babesia and how 80% of people with Lyme have undiagnosed Babesia infections...and those are the people who very commonly have low iron.

Open Original Shared Link

Scroll to the bottom of the page and listen to the soundbyte.

This way if you do find out you have Lyme....you can be fairly certain that you also have babesia....which is probably causing or contributing to your iron deficiency.

Hopefully you can get tested soon to determine whether or not this is an issue.

Rachel--24 Collaborator

Amanda,

I'm curious about Vitamin C. What is your experience with it?

I've read that excess Vitamin C can convert to oxalate for up to 2 weeks! :o

I've had problems with Vitamin C since I got sick....I always react to it....sometimes the reaction hits pretty quickly....other times its delayed.

When my body seems "overloaded"....like it would if I was continuously eating high oxalate foods...I will pretty much start reacting to everything I eat. It will get to the point that I'm reacting as I'm eating or immediately after eating.

I've always believed that it was caused by an overload of some type of chemical or compound in the foods. Can it work that way with oxalates??

Also, I have multiple chemical sensitivities which is significantly more noticeable after eating high oxalate or high mold containing foods. Other times its not as bad.

I never could figure out what the problem with vitamin C was until I started learning more about oxalates....so it *may* be related but I cant say for sure.

Anyways, I had an IV last week which contained vitamin C. I was worried about reacting but I was hoping that it was a gut based reaction that I usually get and that the IV would by-pass that. Well....after the IV I definately got all the symptoms. :(

My inflammation seems to be mostly in my head/shoulders....particularly the sinuses and the jaw. I also have some problems in the gut. The rest of my body is affected but not as noticeably....I've been on restricted diets for a long time now and as a result I'm not having "all over" pain like I once did.

The Dr.'s found that theres alot of mercury in my jaw, brain stem, thyroid.....and that seems to be the reason for so much toxicity and fungus in my upper body...there is also a heavy load in my gut and kidneys.

If I'm reacting to the Vitamin C because of oxalates....could the symptoms flare-up so quickly? Would it depend on the amount I'm consuming in food at the same time? In other words...is it the same as with salicylates and other intolerances....as far as having a threshold which would differ from one person to the next?

I have another IV tomorrow....the last one was a "practice" to see how well I could tolerate the vitamin C, minerals and glutathione which were in the IV.

Tomorrow DMPS will be added into the IV. I dont want to deal with the reaction from the vitamin C again so I'm gonna call and ask if its totally necessary to have the C in my IV....or if it can at least be reduced.

In the meantime I'm still trying to determine whether or not the reaction could have been related to oxalates. Do you know if the reaction can happen that quickly?? I was feeling the inflammation within 10 minutes of finishing my IV.

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    • Dora77
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First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
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