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Omg...i Might Be On To Something


Rachel--24

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NoGluGirl Contributor

Dear Julie,

I am definitely glad the appointment went so well. :) I had been very nervous about it. All I did was worry.

The supplements are worth a try. I wanted to call Monday and be sure that they were to be taken in place of the Prilosec. He is not going to be there, though.

Wow! Your uncles are tall! :blink: My grandfather on my Dad's side is 6'3. I am not sure how tall Uncle Pete is. Mom's side is short. Grandpa is only 5'6, and my grandmother was 5'2. My brother is close to 6 feet tall. He got the height.

Dear Andrea,

How are the children doing? Are they doing any better on foods? I know you have a tight budget like we do.

I have no idea how anyone is supposed to do a rotation diet on a shoestring budgest like ours. I eat five or six times per day, and they do not exactly sell a lot of duck, goose, pheasant, or the like around here! Of course, even if they do sell octopus, squid, and escargot, there is no way I could eat it! :lol:

Dear Kassandra,

It sounds like that new medication is working! I heard it causes a hard herx. Take it easy! I am like you where I often am down on myself about the things I am not getting accomplished. :( Taking a shower is exhausting! It does not help that we have a ton of mold in the shower upstairs, either.

This movie sounds really interesting! Thank you for the shout out! Do not worry. These kind are the only type of shouts that do not hurt my ears! :lol: They are much quieter than my parents screaming back and forth from opposite ends of the house. Since their anniversary is the 23rd, I am thinking a pair of walkie-talkies might be the perfect gift. :lol:

Lack of sunshine very well could be part of your insomnia. I have noticed on days I stayed outside to watch the sunset, I slept better. I was reading "Angel Medicine", by Doreen Virtue. Healing with crystals and sunlight was discussed in it. A lot of this information, only a witch would know. You can imagine I was surprised to find out she grew up as a Christian Scientist.

Dear Paula,

Kassandra is likely right. Nitrates cause a lot of trouble for many people! Headaches are fairly typical in people who do not tolerate them. Truth be told, no one should eat nitrates anyway. These chemicals are very toxic, and have been implicated in a higher risk of Diabetes and heart disease.

I hope your rebate check comes quickly! Sulfur testing is a good idea. I hope to get that done eventually. One thing I have noticed, if I eat that Italian pasta sauce with the tomatoes, garlic, and onions, my underarms smell like it! No matter how much washing I do, no matter how much deoderant I use, the odor is still there! I am not sure if this indicates a sulfur intolerance or not, though.

Mold is difficult to get rid of. Bleach does not always help. I think it depends on the kind of mold. Stachybotrys can get in books, stuffed animals, and other items. You end up having to just throw them away.

Dear Nora,

We have used bleach in the past. It does work, but only if you put it in the tank and the bowl of the toilet. This particular type of mold is very difficult to destroy. If so much as one lousy spore survives, it regenerates within a matter of days! :blink: Upstairs, we used Kilz, which finally got rid of it from the ceiling and some other areas.

I certainly would never mix ammonia with bleach after the story my father told me. Back when he was a teenager, he used to work at Sandy's, which is now a restaurant called Hardee's. He and a fellow worker saw a mouse, and his co-worker panicked and poured bleach and then ammonia on top of the poor creature. Well, it exploded, and the unfortunate rodent turned black! :( This was quite tragic. Poor Mickey!

Salmonella is definitely no fun! Thank goodness for probiotics! If I did not have them and the Promethazine, things could have been much worse! Many people feel the FDA have not been performing the way they should. The strain of salmonella is actually rare. FDA officials were able to identify it down to its DNA as the St. Paul strain.

It is believed that the infected produce was from Mexico and/or Florida. In all honesty, they really are not sure about anything, though. :unsure: At first, they said that grape, plum, and cherry tomatoes were safe. Then, they corrected the report saying that Roma tomatoes were not to blame. Another report the next day said Roma tomatoes were one of the culprits. Latin American countries do not have the safety standards and sanitary practices we require here.

In Mexico, the donkeys can use the field as a toilet and infect the food. As with your country, most food-bourne illnesses are the result of imports here as well. Several years ago, there was a Hepatitis A outbreak in the Chi-Chi's restaurants. The source turned out to be the scallions (green onions) that were in the salsa. They were raw, and even washing could not get between the small crevices to kill the virus. Over 400 people were sickened and died.

That is unbelievable about those sponges! You have to wonder about the people who oversee such things. They would be the first to become enraged if they or a relative became ill as the result of someone else's carelessness. Yet, they head inspections and health management without any concern whatsoever for others. It has gotten to the point eating at all is fearsome, let alone anything else!

I want to learn more about this fortune-teller. I need to look that up! This is interesting! Some people have speculated that Hillary will run as Vice President with Obama. I am not sure, but am curious as to how this will unfold.

Dear Rachel,

Thank you for good-health cheers! I certainly am finally beginning to feel better about things. If I tolerate the supplements, that will be good. At least he is aware as to how bad my body is. Thank goodness Dad met that woman at work!

I do think with texting, you have to be on the same network. Some may allow you to IM people with other providers, but fees will probably be charged. Those messages are expensive to send. As was mentioned, your friend can sign up for AOL IM free. I did when I was in college, because that is how we reached our professors during office hours.

I have heard various things about mold. Some of it contradicts what I have read. Certain kinds of mold are more prone to the demise by bleach. Most molds that are classified as toxic tend to require professional removal. Speaking of this, do you know what my mother said? She told me if they go to sell the house, not to mention anything about the mold.

First of all, that is unethical. Second, I told her there is no way you can sell a house knowing it has mold in it to an unsuspecting buyer. People are not so stupid that they are not going to figure out the people who lived here before screwed them. They would deserve to be sued if they did such a thing. Again, there is no way I can be a biological descendent of these insane people! :blink:

Dear Donna,

I am so happy to be back! It feels strange not being here. I have just been afraid to be online much since what occurred on Lyme Chat a while back. The idea that people were spying on me was scary! What kind of weirdo does that?

I sure hope you get in to see Dr. Amy, too! She is great! With as much as she has been able to do for Rachel, you can only imagine what she could do for you! Hopefully, you will find a way around the scheduling so that the surgery does not interfere. Everything always does seem to run together. It is so inconvenient!

Testing again for molds is a good idea. The last test may not have been very accurate. Taking allergy shots will alter the results. I used to take allergy shots as a child. We had to stop them, because they made me cranky.

Let us know about the RBC and urine challenges once they are done.

Dear Sherry,

That would be so neat if you and Donna got to see each other! Maybe times will work out! We can hope!

This would be a Rachelville mini-reunion. How cool is that?

Yes, the food poisoning was the last thing I needed. Mom and Dad did not really need it either. Who does? Food poisoning is best avoided. You know they said most people actually have food poisoning and not the stomach flu? The symptoms are so similar, it is easy to assume it is the flu instead.

Dr. D is nice. We had a 45 minute appointment. That is so much better. Nutrition is important to him, and he is willing to accept other health conditions as causes, including Lyme. He is very aware of the ill effects it has on the body and the neurological system.

I have never heard of Skype. The cost sounds great. I am going to keep that in mind. Although I do not have a cell phone, my parents do. Dad never would let me text to my friends because of the cost.

Dear Everyone,

Well, I am disappointed to report I was rejected for the About.com position. It is irritating. I feel this sort of bigotry should not be tolerated! :angry: Many dieticians, let alone doctors know absolutely nothing about Celiac or gluten-free cooking! Just because you have a degree does not mean anything. I am going to be very annoyed if they hire someone just because they are a dietician and not even a Celiac or gluten intolerant individual. I really needed this job, too.

Sincerely,

Jin


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mftnchn Explorer

Nora, thanks so much for that link! Wow, that could also explain my glutathione deficiency.

I am looking forward to finding out what my current levels of D are.

Sherry

NoGluGirl Contributor

Dear Sherry,

I read something interesting today. We get Woman's World magazine every week. It is one of our favorites. One article was talking about ancient health secrets, which included the Mayans' ways. Avocado was used for moisturizing skin, and it has a lot of glutathione! I always heard about it having healthy fats, but never glutathione!

Sincerely,

Jin

nora-n Rookie

Thank you for the comments on mold. Here we have chlorine and one other thing.

If a house has mold damage, they rip out everything and replace with new materials, so chlorine and the other thing are just used for surfaces and minor spots. Mold in the walls of bathrooms is not uncommon here and they rip out everything then. They found out that tiles are not water-proof. One needs to use some membrane beneath in addition. In floors end walls that get wet by water from shower.

Mold can only grow if there is something faulty in the construction, if there is insulation missing so that moisture condenses and there is moisture where there should not be any, or if the basement is not drained and things like that. we have a cold climate so we use more insulation than many places in the US. The seller can buy a seller's insurance and they might take care of complaints. The authorities forbid livingn moldy houses so some people have to live in hotels or rent another place while the flat or house os repaired. Some people go bancrupt.... I know some people where sewage came up from outside because a ventil (flap, or something tht hinders accidental flowing backwards) was not installed in the sewage system of the area so it was not their fault. Now they had been struggling with two insurance ompanies, their own and the town's and now they have ripped down the whole house and are building a new house but they do not know how much money they get back. They have some money or their own, luckily.

Hubby is in the fire department and he told me that often mold is in the fire engine water tanks so when they put out a fire with that water, the house must be torn down anyway because of the mold in the water....

Here is the intervew I read last week with Henning Hai Lee Yang: Open Original Shared Link but he wi well-known. My girlfriend has seen him. He saw that she had had trauma to neck and head (her husband used to break dishes on her head many years ago....probably because she was not perfect in keeping house and spending a little bit too much money, he grew up in a very poor family and wanted everything perfect and manoey in the bank. Now he has a lot of money in the bank...they have been divorced for nearly 30 years)

Added about the messaging: we use text messages here a lot, also with pictures and videos. It is strange the iphone (which we do not have here) has no MMS function. Skype works well and is free if using it between computers only, with just telephone function, or telephone and video, or just instant messages. If I skype with my sister it is choppy on her side but she probably has the program following a panda in china running in the background stealing bandwidth.

gmail can be downloaded to the phone and ou can read and write emails on the phone. (on your gmail account, but the other part does not have to have gmail)

gmail has some instant chatting thing too I think between computers that does not cost.

Yahoo has some things too. I mes someone who has a wife in the philippines and they talk every day on yahoo for hours.

One can do same thing on skype for free too, with live camera.

nora

Green12 Enthusiast

Rachel,

If he has Yahoo, you could both download Yahoo messenger on your computers and then you both could chat using that, they do have phone options/features but I don't know exactly what they are (it might include texting?)

I think you have to have the same provider (i.e. yahoo or aol) or a provider that is compatible with other things, like for example Yahoo messenger can be used with MSN messenger.

Green12 Enthusiast
Everyone,

OMG!!!!!!!!!!!!!! You all HAVE to see Under Our Skin! It is INCREDIBLE! (sorry to shout, but this deserves shouting, LOL!) I am so amazed...it's life changing. I'm going to figure out a way to send copies to everyone in my family. I am sick of people not understanding, and in my case people want to understand, but don't know how to.

This will leave NO questions in people's mind about the severity of Lyme! AMAZING! :) :) :D

Thanks for your thoughts about Under Our Skin Kassandra, is it viewable online??

I also hear you on the shower thing, I know the days are bad when even a shower seems like such a challenge <_<

Sherry, I just had a blood draw for my Vit D levels, as well as a ton of other things. I'm curious to see if they have changed after all my Vit D and Cod Liver oil supplementation.

The blood draw was terrible too, as usual, she had trouble finding my veins and she was digging around with the needle, my arm is so bruised :rolleyes: I want to scream, NO MORE BLOOD DRAWS!!!!!

CarlaB Enthusiast
Everyone,

OMG!!!!!!!!!!!!!! You all HAVE to see Under Our Skin! It is INCREDIBLE! (sorry to shout, but this deserves shouting, LOL!) I am so amazed...it's life changing. I'm going to figure out a way to send copies to everyone in my family. I am sick of people not understanding, and in my case people want to understand, but don't know how to.

This will leave NO questions in people's mind about the severity of Lyme! AMAZING! :) :) :D

Very cool .... I can't wait to see it! Did you buy the DVD?


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confusedks Enthusiast
Thanks for your thoughts about Under Our Skin Kassandra, is it viewable online??

...

The blood draw was terrible too, as usual, she had trouble finding my veins and she was digging around with the needle, my arm is so bruised :rolleyes: I want to scream, NO MORE BLOOD DRAWS!!!!!

I don't think you can view it online. You have to buy the DVD. I will post the link in a few minutes so anyone who wants to can purchase the DVD. I STRONGLY recommend it to everyone!!!!!!

About the blood draws, yea I get that! I HATE blood draws. I got ENLA cream (something like that) for when they access my port and they use it for blood draws too! Any needle pokes you can use it for. You might be able to get an rx from one of your Dr's.

Finally now, most of my blood draws are done from my port on a weekly basis. I would be so vein-less if they did it from my arms every week.

Very cool .... I can't wait to see it! Did you buy the DVD?

Yes I bought the DVD. It is really amazing. I feel SO empowered from it. I watched it about half way though last night and had a total break down. I haven't cried like that in at least a year. I haven't really CRIED (not just a tear or two) since I was diagnosed with Lyme. :blink: It finally ALL caught up to me. To see others going through what I have been going through was extremely validating.

I really suggest it to everyone. I am going to make rounds to all my family members houses and sit with them while they watch it. :lol: It is revolutionary to me!

confusedks Enthusiast
Open Original Shared Link That is the link to buy the DVD. It is SO worth the money!
dlp252 Apprentice
Completely off topic, you may delete this: I read some days ago in an interview with our most famous fortune teller, Henning Hai Lee Yang (originally from China but he has lived here from childhood) that it is gonna be Hillary after all. I wonder what is gonna happen or what he sees will happen.

Wow, even AFTER whatshisname "won" the nomination? Wow, lol. That would be interesting, lol. :P

This will leave NO questions in people's mind about the severity of Lyme! AMAZING! :) :) :D

Thanks for posting about this and thanks for the link. I may have to invest in this.

I'm crossing my fingers that you'll be able to see Amy next time. :)

Me too...course if I can get up and around quickly after my surgery, I'll probably have about 4 weeks off work, so as long as I can drive I would have flexible hours available.

Does anyone know??

OMGOSH, I can't even figure out how to text, lol!!! My little cousin and I did IM on the computer, but I can't keep up with her. So, I guess I won't be any help. :lol:

Donna, I agree, this sounds like a good plan. If you come to Washington I hope it is before I leave!

Now THAT would be fun!

I am so happy to be back! It feels strange not being here. I have just been afraid to be online much since what occurred on Lyme Chat a while back. The idea that people were spying on me was scary! What kind of weirdo does that?

Sorry about the about.com thing! You aren't kidding when you say that most of us know more than dieticians, lol.

I'm so sorry about the lyme chat thing...I don't even think I know exactly what happened, but sometimes people can be so weird, lol.

ShadowSwallow Newbie

Hi Everyone,

I'm still in Maine (the pollen here is awful... its a yellow scum on the beach). Things are just about as average as they can get. :P

The only new thing is that the eczema on my face has developed from an atypical to classic presentation. :rolleyes: I'm going to be talking to my dr about either a prescription that I've read up on, or seeing a dermatologist. I'm getting sick of getting gunky creams in my makeup brush.

Birdy

mftnchn Explorer

Okay, everyone. I re-took the VCS test without wearing my left eye contacts and reading glasses on that side. The test is Negative. Total VCS score 84, Negative. Overall Indicator Score: 32. Left eye indicator score 15, negative and Right eye indicator score: 17 Negative.

I did feel like I was guessing on some of them, but it did say to do what you think it is even if it isn't clear.

So I guess I must be doing pretty well on my current treatments, and wonder what this means for my treatment.

Sherry

mftnchn Explorer

Woops, I meant I must be doing pretty well with my current lyme treatment, but wonder what is still amiss that I need to address?

Sherry

mftnchn Explorer
Sherry, I just had a blood draw for my Vit D levels, as well as a ton of other things. I'm curious to see if they have changed after all my Vit D and Cod Liver oil supplementation.

They sometimes have a hard time with my blood draws too, especially if I am cold.

I am also interested in the DVD Under Your Skin.

Julie, I am curious about your Vit D level. I just read on the link Nora sent that if you are low on Vit D you should not be using cod liver oil that is too high in Vitamin A. Vit A antagonizes D apparently.

Sherry

mftnchn Explorer

Rachel, this link might be of interest because it mentions salicylate sensitivity. I found this family's story very interesting, and had never heard of Hughes' Syndrome. But a lot of this information makes sense and the site has a lot of good scientficness links.

Open Original Shared Link

Sherry

Guest tamedandfoxed

Hey guys...

So. I know i disappeared for awhile. I got sick of the health "thing"... trying to figure it out was more stress than the problem itself. so i took a hiatus.. And then I couldn't log back in cuz i forgot my passoword/email! oy!

Anyway, I've missed about 700 pages.. which i probably wont be reading...

I'll give a quick update and then hopefully jump back in. if that's okay..

DRS: I've been seeing the Chiropractor, who is wonderful. I love her. I've run out of appts for my PT so my shoulders aren't doing great but Corky--one of the PTs will see me under the table every once in awhile if i'm in agony which is nice. I went to see a Dr at the University of Michigan for the infection on my Cervix that wont go away... still waiting on labs but i really liked her, she was the first who actually listened to what i was saying.

Per her advice, Today I am tentatively starting a trial diet: Low Oxalate; which seems REALLY weird to me.. everything that i've been told is really healthy for you, on this diet (not so much)..

um, it's been storming alot in Michigan, our windows overflowed a few times and now my mom thinks we have MOLD under the carpet upstairs.. she wants to have someone clean it or put a fan on it to dry, i was able to tell her NO FAN cuz that would blow the spores everywhere but i don't really know the best method for 1) seeing if there is mold and 2) getting rid of it. I told her to just throw the carpet away! but we can't really afford that..

Good news is it wont be my problem come Mid-August, when i move out and into an adorable apartment with a friend! :)

That's all for now. I hope you all let me come back! i've missed hearing about your lives.

xo

Katy

AndreaB Contributor

Julie,

Sorry about the nightmare blood draw.

Reading right along everyone. I've got a cold/flu thing and haven't had the energy to be on the computer. Was on the couch all day yesterday and plan on being their as much as possible today. :)

CarlaB Enthusiast

Welcome back Katy!

Hope you feel better soon Andrea.

jerseyangel Proficient
Rachel, this link might be of interest because it mentions salicylate sensitivity. I found this family's story very interesting, and had never heard of Hughes' Syndrome. But a lot of this information makes sense and the site has a lot of good scientficness links.

Open Original Shared Link

Sherry

Sherry,

Thank you for posting that link. My mom has been diagnosed with Antiphospholipid Syndrome several years now--the new information is very interesting. Thanks again! :)

Green12 Enthusiast
Yes I bought the DVD. It is really amazing. I feel SO empowered from it. I watched it about half way though last night and had a total break down. I haven't cried like that in at least a year. I haven't really CRIED (not just a tear or two) since I was diagnosed with Lyme. :blink: It finally ALL caught up to me. To see others going through what I have been going through was extremely validating.

I really suggest it to everyone. I am going to make rounds to all my family members houses and sit with them while they watch it. :lol: It is revolutionary to me!

Wow Kassandra, I'm glad you got that validating connection with it, that can be quite empowering and a positive contribution to the healing process :D

Thanks for the link too, I am definitely interested in seeing it.

The only new thing is that the eczema on my face has developed from an atypical to classic presentation. :rolleyes: I'm going to be talking to my dr about either a prescription that I've read up on, or seeing a dermatologist. I'm getting sick of getting gunky creams in my makeup brush.

Oh Birdy, I am so sorry :( I hope you will be able to get something from your Dr that will give you some relief.

Anyway, I've missed about 700 pages.. which i probably wont be reading...

I'll give a quick update and then hopefully jump back in. if that's okay..

Hi Katy, of course jump right in! It's scary going back in he thread :lol:

Thanks for the update, glad things are going well with your chiropractor and good luck with the low oxalate diet :)

Andrea, hope you feel better soon :wub:

Sherry, thanks for the info about Vit A interfering with Vit D. I am interested now to see what my levels will be.

CarlaB Enthusiast

Ugh, my son who is the big pain in the butt just got a job with a landscaping company. So today was his first day and he's too good to wear long pants and tuck them in his boots, so he got a tick.

What do I do? Give him something? Or wait and see? It was not a deer tick, but I don't believe I got Lyme from a deer tick.

I'm irritated with him ... you would think that after all I've been through that he would take things like this seriously.

dlp252 Apprentice

OMGosh Carla!!! KIDS!!! That's a tough call...but that thought that this would be the best time to treat it if it was carrying lyme keeps popping up. You could ask your PA what she thinks...

confusedks Enthusiast
Ugh, my son who is the big pain in the butt just got a job with a landscaping company. So today was his first day and he's too good to wear long pants and tuck them in his boots, so he got a tick.

What do I do? Give him something? Or wait and see? It was not a deer tick, but I don't believe I got Lyme from a deer tick.

I'm irritated with him ... you would think that after all I've been through that he would take things like this seriously.

At least he got a job...right?! :lol:;)

I guess I would see if he gets a rash? I'd also definitely put a call into the PA. You might want to put him on abx for a few weeks just to see what happens.

Did you save the tick? I don't know if you maybe would want to send it to Igenex to get tested?

CarlaB Enthusiast

He got a job because his dad drove him there as soon as dad got back from out of town last week. :D Funny how easy a job was to find when he really looked.

Thanks for your suggestions. No, he didn't save the tick. <_<

I read the Dr. B guidelines. They say if it's a deer tick in an endemic area (what's that? the whole country? LOL), then treat right away. Otherwise wait till you see a rash or other symptoms.

Since he's landscaping, if he starts having symptoms I'll give him amoxy and biaxin (what I have .... I would give him zith, but I can't part with it) since doxy would be out of the question with landscaping.

I'll go with the Dr. B guidelines. :) If he starts having symptoms, I'll call the PA and set up an appt.

Green12 Enthusiast
I read the Dr. B guidelines. They say if it's a deer tick in an endemic area (what's that? the whole country? LOL), then treat right away. Otherwise wait till you see a rash or other symptoms.

Since he's landscaping, if he starts having symptoms I'll give him amoxy and biaxin (what I have .... I would give him zith, but I can't part with it) since doxy would be out of the question with landscaping.

I'll go with the Dr. B guidelines. :) If he starts having symptoms, I'll call the PA and set up an appt.

Sounds like a good plan Carla.

Sorry this happened :(

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      Thanks for sharing, Karen. Certainly a needed reminder what we already knew (and I've posted many times on this forum) but sometimes forget, namely, autoimmune disorders tend to cluster. Where one is found, you can look for others to show up eventually. The thing that is unusual in your son's case is the onset of several of them at such a young age. My sister in law, who is in her early 60's has Crohn's and struggles with constipation so I don't think that is unusual with Crohn's. If nothing else, it's the outcome of not eating much because of the pain. Now that you know what is going on with your son and the Crohn's, we hope he is beginning to improve.
    • Nathan.
      Hi there. My son is turning 16 this month. He had an endoscopy and biopsy to confirm celiac. He went gluten-free and his pain never got any better. I think it got worse. Months went by. The pain started around 7th grade. He missed a lot of school in 8th grade, and a whole lot in 9th grade. He couldn't go to school in 10th grade. All along the gastroenterologist prescribed Hyoscyamine, didn't help at all. Cyproheptadine, no less pain. Peppermint oil, ginger, Miralax, Senna. Doc said he was constipated, but I couldn't get him to have Miralax daily. Eventually he went on Linzess and no senna or Miralax. Sorry this is long, there will be a point.  We gave his school not just a doctors not, but everything, and U of M makes a lot of notes. They still turned us in for Truancy.  I didn't get him enrolled in online school fast enough.  The school would not recommend an online school and i didn't know which one to choose.  Doc thought it was nerve pain and mental. He recommended the u of m my pain program.  Nathan did so good, 3 days a week supposed to be for 4 weeks.  Never missed, always on time.   After two weeks, they discharged him. Said it was not  benefitting him.  Pain went on. I had been asking if there were any other test they could do. Ultrasound, colonoscopy. Doc said we can do it, but I don't think we'll find anything.  Finally he had a colonoscopy and another endoscopy.  Guess what, they did find something. They found a ton of tiny ulcers everywhere, from the esophagus to his rectum. They think Crohn's. I understand they didn't check for that because he was more constipated, not much diarrhea. He is getting an MRI with contrast on Sunday. Also they want him to do a cal-protectin (give a poop sample). Then an appointment on the 16th to talk about treatment. Then the probation officer on the 17th. In the meantime he is taking Budesonide extended release.  $276.00 for 30 pills, and that's with insurance. Also he was diagnosed with hyperthyroidism, Graves disease a few months ago. If it is for sure Crohn's,  it will be three autoimmune diseases. If someone is gluten-free for a month or more, and the pain is no better, don't stop looking. I was beside myself. Did they think he was exaggerating, lying? I was considering taking him to a holistic doctor, who would probably recommend Peppermint oil and ginger.  He's such a good kid. Kind of an introvert. He was on the 9th grade soccer team. He would try to go to practice and kept having to stop, the pain was that bad. Every time he ate, it didn't matter what, gluten-free chicken tenders, mac and cheese, pizza, ice cream, all gluten-free, he would eat a normal amount but stop and say, I can't eat anymore, my stomach hurts.  If anyone reads all this, thank you. I had a gut feeling, no pun intended, that he had an additional problem. They found celiac and stopped looking. If you don't feel better, keep on your doctor to check further, keep looking.   Take care, Karen  
    • Scott Adams
      Most likely cross-contamination I believe.
    • cristiana
      I think it takes different people different amounts of time, but in my own case I had pain,  bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went.  I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks.  That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better.  Now I can tolerate it well. From Coeliac UK "The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary." So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids.   Bear in mind you should be able to reintroduce it. As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12.  Were these levels tested?  If not, I would suggest you get them done.  If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.
    • knitty kitty
      Hello,   The medication in these inhalers can cause a thiamine deficiency if used by someone already low in thiamine.  We don't absorb sufficient amounts of vitamins and minerals due to the inflammation and damage done to our villi in Celiac Disease.  Even a long term strict gluten free diet may not provide sufficient amounts of vitamins and minerals.  There are eight B vitamins that all work together.  Thiamine deficiency often shows up first because our bodies use so much of it and it can't be stored very long. Thiamine deficiency symptoms can appear in as little as three days.  Without thiamine, the other B vitamins may not be able to function properly.   Thiamine is needed to clear lactic acid accumulation caused by the inhalers: Shoshin beriberi provoked by the inhalation of salbutamol https://pubmed.ncbi.nlm.nih.gov/12951730/    Significant Lactic Acidosis from Albuterol https://pmc.ncbi.nlm.nih.gov/articles/PMC5965110/ Albuterol-Induced Type B Lactic Acidosis: Not an Uncommon Finding https://pmc.ncbi.nlm.nih.gov/articles/PMC7263006/ Lessons of the month 1: Salbutamol induced lactic acidosis: clinically recognised but often forgotten https://pmc.ncbi.nlm.nih.gov/articles/PMC6964186/ An Overview of Type B Lactic Acidosis Due to Thiamine (B1) Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC10731935/   Thiamine has antifungal and antibacterial properties.  Thiamine helps keep Candida in check.  Thiamine helps keep SIBO in check.  Thiamine helps with black mold, Aspergillis infection.  Riboflavin helps fight Candida infection in the mouth. Riboflavin Targets the Cellular Metabolic and Ribosomal Pathways of Candida albicans In Vitro and Exhibits Efficacy against Oropharyngeal Candidiasis https://pubmed.ncbi.nlm.nih.gov/36625571/   Thiamine deficiency can make ones voice hoarse and can cause localized edema.  Niacin deficiency can make ones voice hoarse.  (Niacin deficiency and Thiamine deficiency can each cause irritability, agitation, and lability.) Hoarseness in pellagra https://pubmed.ncbi.nlm.nih.gov/21507655/ Hidden Hunger: A Pellagra Case Report https://pmc.ncbi.nlm.nih.gov/articles/PMC8152714/   Anesthesia can cause B12 deficiency.  B12 deficiency can show up as mouth sores and geographic tongue, diarrhea, and dementia. Vitamin deficiency, a neglected risk factor for post-anesthesia complications: a systematic review https://pmc.ncbi.nlm.nih.gov/articles/PMC11823251/ Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency https://pubmed.ncbi.nlm.nih.gov/8250714/ Subacute combined degeneration of the spinal cord following nitrous oxide anesthesia: A systematic review of cases https://pubmed.ncbi.nlm.nih.gov/30144777/ The Effect of Vitamin B12 Infusion on Prevention of Nitrous Oxide-induced Homocysteine Increase: A Double-blind Randomized Controlled Trial https://pmc.ncbi.nlm.nih.gov/articles/PMC4052402/     Eating a diet that is heavy in carbohydrates can precipitate a thiamine deficiency.  As the amount of carbohydrates consumed increases, additional thiamine is needed, otherwise the carbs will be stored as fat.   Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/   The deficiency symptoms of some of the B vitamins cause gastrointestinal symptoms that resemble the same symptoms as when being glutened.   Thiamine deficiency can present as vomiting, diarrhea and abdominal pain (Gastrointestinal Beriberi).  Niacin deficiency can present as diarrhea (Pellagra = diarrhea, dermatitis, dementia, then death ).  B12 deficiency can present as diarrhea or dementia.  Not everything is caused by hidden gluten.  Gluten free processed foods are not required to be enriched with vitamins lost in processing like gluten containing foods are. Blood tests are not accurate measurements of vitamin levels, but do talk to your doctor and nutritionist about supplementing with the eight B vitamins, Vitamin C, the four fat soluble vitamins and minerals like magnesium.  Your physician can give you a shot of B12 before anesthesia administration.   By the way, Celiac Disease genes have been traced back to having originated in Neanderthals.  I'm not a singing teacher on the net.  I earned a degree in Microbiology after studying nutrition because I wanted to know what vitamins are doing inside the body.  I've experienced nutritional deficiencies myself. Hope this helps!  Keep us posted on your progress!
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