Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

mftnchn Explorer

Hi Jin, glad to read you column again! ;)

I am getting around much much better today into my third day of abx for the week.

So, I am pretty sure that I am actually going through a lyme symptom recurrence; it may have been triggered by the massage during my menstrual period (a no no according to my Chinese friends), and maybe I have back strain from it (my lower back for sure was swollen). But also I have had other lyme pain symptoms like upper back pain, and nerve pain through my arms and into my hands.

So, the current med regimen is not holding me...and I am going to have to cut back too. I wrote my doctor back asking if I can up my zithromax to more than 4 days a week, but I don't know what he will say.

Discouraging to say the least. I may be forced to a totally herbal protocol, so am going to be looking hard at the Cowden. My regimen to date has included only a part of that.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
mftnchn Explorer

Had some homemade noodles today, made from buckwheat flour that we ground ourselves. They were really marvelous. Tasted very like gluten pasta with a bit of whole wheat in it. Maybe it was because the flour was freshly ground.

My cook just mixed the ground flour with water, as we only had a little bit. We'll try adding egg next time and make a bit more and freeze them. She is going to try to make Chinese dumpling skins tomorrow with this. Then we'll try tortillas, we think the tortillas will need a little oil and or xanthan.

confusedks Enthusiast

Jin,

I don't know if the dates were causing me trouble or not...it seems a lot of things are these days. I had some tortilla chips yesterday....ugh that was one of the worst ideas I have had in a while...lol!

Everyone,

I am sitting here at 5 in the freakin' morning...wide awake! But I am so tired it's crazy, and I have been up since 3.30. I think I should talk to the LLMD about this wacky sleep pattern (or lack of) because it's really becoming problematic.

I think I am going to go make [Carla's] fudge for the trip. :rolleyes: I don't know how anyone ever gets things done when sleep is such a problem!!! UGH!

Kassandra

confusedks Enthusiast

Sherry,

I am so jealous of you!!! My uncle has a housekeeper/chef who is amazing! They only live about 20 minutes away, and I go there whenever I can because she treats me like a princess!! It's so nice to have someone make food for you!

Kassandra

confusedks Enthusiast

Everyone,

Can you guys read the Lyme Disease thread because I put a couple questions in there...I would have posted them here, but they are specifically related to Lyme.

Thanks!!!

Rachel--24 Collaborator
Oh Rachel Dee says hi and asked how you were doing. I told her you were doing good.

I know about the carpet cleaning incident. :D

I havent been there since I got done with my LED's...I was thinking of stopping by and dropping off a Xmas card for them. Dee is really cool....its funny how I end up missing the people who have treated me.

I have NEVER missed any of the conventional Dr.'s I'd seen for 3 years...it was more like "good riddance". :P

Yeah...the carpet incidence was a heinosity. I had to miss work for a whole week because of it. I guess Dee told you about that. I had posted about it here too....basically my mom "chemicaled" me. :rolleyes:

Dark circles and pale skin is something I get if I'm eating or taking something I'm reacting badly to.

Wecome Tantwan!! :)

I think that if you *feel* like something isnt right...more than likely you are correct. Trust your instinct. ;)

For most people here heavy metals and chronic infections have played a role...particularly Lyme and co-infections.

As Carla mentioned its very common to develop Celiac later in life. Many people have the disease triggered during pregnancy, illness or some type of stress (emotional or physical).

confusedks Enthusiast

Oh yea, someone asked about being pale with dark circles under your eyes...I am the queen of that!!!! The pale skin is when I am lacking iron, but the dark circles seemingly never go away! My allergist said it looks like I am a "typical allergy patient!" :angry:

Kassandra


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast
Discouraging to say the least. I may be forced to a totally herbal protocol, so am going to be looking hard at the Cowden. My regimen to date has included only a part of that.
Since you're in China, maybe you could give Eastern medicine a try .... I would be very tempted to go that route if I were you .... honestly, they seem to understand the body better. Sorry you're feeling so bad.

Everyone,

I am sitting here at 5 in the freakin' morning...wide awake! But I am so tired it's crazy, and I have been up since 3.30. I think I should talk to the LLMD about this wacky sleep pattern (or lack of) because it's really becoming problematic.

I was surprised that you were the last post when I was just getting up .... that's why I had to give in and start taking Ambien. Stupid insomnia.

Dark circles and pale skin is something I get if I'm eating or taking something I'm reacting badly to.
I used to have that pale, almost transparent skin .... I was scary without makeup (foundation) though I seldom had the energy to put it on, or if I did, I knew I wouldn't have the energy to wash it off ... now my skin is creamier and has some color .... it was right after the Humaworm that it changed! :ph34r:
dlp252 Apprentice

Sherry,

Sorry, no experience with NAG or GLA. Wow, sorry you have to stop your meds!!! Hope the enzymes normalize soon!

Ummm, those noodles sound great, lol. I am SOOOO very jealous of your cook!!! :lol:

Tantwan,

You're welcome! It is just like a big ole family here, and yes, we get worried when we don't hear from someone in a while, so we tend to keep track and let each other know what's happening. :P

You'd LOVE to bake for me then, because my face is VERY expressive when a chewy chocolate chip cookie is anywhere within two miles of me! :lol: You missed my cookie binges a couple of months ago. :P:ph34r:

I'll have to look up idiopathic anaphylaxis...I don't know anything about it.

I had TMJ, but my symptoms are mostly gone since having my amalgams removed and starting on all the supplements and stuff that I'm taking for the metals and lyme. I still get a little pain here and there, but even though it's in the jaw, it seems tied to my ears and sinuses for some reason.

Kassandra!!!!,

OMG, I can NOT believe that insurance company! I like the idea of getting media involved. We have several news channels here who have a "consumer" help department...people who can't seem to get an issue resovled contact them, and them and the news channels get invovled. I've seen a lot of resolution to problems that way.

Jin,

I WAS eating turkey, but that seemed to not be helping anymore...I'm going to try it again tonight, but have it right before bed. I was eating it around 7:00, so I think if I have it around 8:30, that might be better. We'll see.

I am sitting here at 5 in the freakin' morning...wide awake! But I am so tired it's crazy, and I have been up since 3.30. I think I should talk to the LLMD about this wacky sleep pattern (or lack of) because it's really becoming problematic.

OMGosh, when do you leave today? How exciting!!! I'm so excited for you, you'd think it was happening to me, lol. Yeah, I see my LLMD on Monday, and I think he'll be pleased that I have seen improvement with the neurotransmitter supplements, but I intend to ask about ambien as well. It's really tough to do anything with no sleep, but my doctors are really concerned that if I can't get the restorative sleep, I won't get 100% better.

I've got the pale skin and dark circles too. My mom thinks the circles look better than they did a few months ago, so that's encouraging. But I'm Italian for heaven's sake and I should have olive skin, but I take a "LIGHT" foundation color, lol.

Stupid insomnia.

Yeah!!! :angry:

melmak5 Contributor

Thank you all for your support. I think I was just having a melt down.

I have looked into both acupuncture and chinese herbs, which have provided some help, but again, not really getting to the root of the problem.

H.pylori was negative

My gyn stuff is FINALLY taken care of. I went to the drs instead of lunch yesterday and they said everything was "perfect." One bodily system down, 3 to go! (and no panic attack to boot)

A holistic doctor does not seem like such a bad idea. I just feel a bit nauseas at the idea of trying to find yet another doctor.

I tried some rice again, and some corn. Stupid stupid stupid. I ended up with flu like symptoms for the past 3 days. Phlegm-city. I am going to try to stick with potatoes, they aren't great, but they don't cause as many issues.

But no more sugar. I made homemade cranberry sauce and as I finished the last of it last night I realized it has been the reason I have been regurgitating at night. DAMN SUGAR.

AndreaB Contributor
Discouraging to say the least. I may be forced to a totally herbal protocol, so am going to be looking hard at the Cowden. My regimen to date has included only a part of that.

Please keep us posted.

Had some homemade noodles today, made from buckwheat flour that we ground ourselves. They were really marvelous. Tasted very like gluten pasta with a bit of whole wheat in it. Maybe it was because the flour was freshly ground.

My cook just mixed the ground flour with water, as we only had a little bit. We'll try adding egg next time and make a bit more and freeze them. She is going to try to make Chinese dumpling skins tomorrow with this. Then we'll try tortillas, we think the tortillas will need a little oil and or xanthan.

Boy does that all sound good! I have no ideas or drive to find things different to eat. We are definately in a rut.

Am making Chili for Mitch's b-day today......along with Kristina's Pumpkin Custard. I know they don't sound good together but hubby wanted chili. I forgot to soak the beans last night so I'll have to quick soak them and then cook them before making the rest. We are trying Lorka150's recipe.....she's a poster on the board who came out with a cookbook.

I am sitting here at 5 in the freakin' morning...wide awake! But I am so tired it's crazy, and I have been up since 3.30. I think I should talk to the LLMD about this wacky sleep pattern (or lack of) because it's really becoming problematic.

I think I am going to go make [Carla's] fudge for the trip. :rolleyes: I don't know how anyone ever gets things done when sleep is such a problem!!! UGH!

Seems like insomnia is a lyme byproduct for some reason.

When do you guys leave? I'm so excited for you to be going to the LLMD!!!!!

Yeah, I see my LLMD on Monday, and I think he'll be pleased that I have seen improvement with the neurotransmitter supplements, but I intend to ask about ambien as well. It's really tough to do anything with no sleep, but my doctors are really concerned that if I can't get the restorative sleep, I won't get 100% better.

Can't wait to hear what your doctor says either. So much going on with everybody right now and appointments.

confusedks Enthusiast

Crap crap crap....I ended up falling asleep at about 7.15 and my alrm was to go off at 8...well I slept through it!!! AHHH! Well, I am off to go have an iron IV and my dressing changes (REALLY nervous about that....ugh) and then we are going to hit the road!

So, I will try to get on tonite if we have wireless in the hotel...if not I'll "see" everyone when we get back tomorrow night!!!

Kassandra :)

AndreaB Contributor
So, I will try to get on tonite if we have wireless in the hotel...if not I'll "see" everyone when we get back tomorrow night!!!

Safe travels. Hope you can get on tonight otherwise we'll be chomping at the bit to hear from you tomorrow night. :)

Green12 Enthusiast

Just wanted to say hi.

I've had an angioedema outbreak that's been pretty bad. Last Saturday I woke up with it on my tongue which was very scary, my tongue was so swollen it filled up my entire mouth and it was close to blocking my airway.

I'm really behind on posts, but I hope everyone is doing well.

Green12 Enthusiast

Just wanted to say hi.

I've had an angioedema outbreak that's been pretty bad. Last Saturday I woke up with it on my tongue which was very scary, my tongue was so swollen it filled up my entire mouth and it was close to blocking my airway.

I'm really behind on posts, but I hope everyone is doing well.

jerseyangel Proficient
Dear Patti,

Hello, Angel Spice! How are you doing? Everyone sure misses you around here. Is the new house feeling like home yet? I was wondering, since you are soy-free, you would not happen to know a gum that does not stick to teeth do you? All I have looked at so far have soy lecithin.

Hi Jin :D

I like Glee Gum--

Open Original Shared Link

2 of the flavors don't contain any soy. I'm not sure about sticking to teeth--I've only used the Peppermint, which is the only one that has soy lecithin. It's like Chicklets :)

Best of luck with your test--hope the kit gets here on schedule.

Glad to see you check in--I don't get on here as much as I used to, but I catch up eventually. I'm doing fine, actually--I feel better than I have in a long time. We are busy settling in the new house, right now there are several projects going on , and with the holidays it makes for a bit of chaos. It's all good, though :P

You take care ;)

jerseyangel Proficient
Just wanted to say hi.

I've had an angioedema outbreak that's been pretty bad. Last Saturday I woke up with it on my tongue which was very scary, my tongue was so swollen it filled up my entire mouth and it was close to blocking my airway.

I'm really behind on posts, but I hope everyone is doing well.

Oh Julie, I'm so sorry about the outbreak :(

The tongue swelling sounds scary--did you have something to take when that happened?

AndreaB Contributor

I was starting to get worried about you Julie. :(

Are you over the worst of the outbreak now?

Green12 Enthusiast
Oh Julie, I'm so sorry about the outbreak :(

The tongue swelling sounds scary--did you have something to take when that happened?

Thanks Patti. I carried my epi pen around all day and was on stand by to go the ER, I also tried some homeopathic remedies too, but thankfully it didn't get to the point where I couldn't breathe. But it was super scary and I'm glad it's over :lol: .

Are you over the worst of the outbreak now?

Thank you to you too Andrea. Yeah, I'm over the worst of it now, just have a few lingering areas but they are working on going away.

mftnchn Explorer
I've had an angioedema outbreak that's been pretty bad. Last Saturday I woke up with it on my tongue which was very scary, my tongue was so swollen it filled up my entire mouth and it was close to blocking my airway.

Julie that sounds horrible. Do you have any idea what caused it?

I am still struggling with back ache, a week now. :( Am checking out the Cowden protocal and reading more in my Buhner to see what I might be able to try if I can't use abx anymore.

NoGluGirl Contributor

Dear Rachel,

I can relate to the chemical sensitivity. I am not sure if mine is quite a severe as yours, but it impacts me differently. Most of the time, perfumes and cleaners cause nausea, dizziness, and often make my body ache. Chemical sensitivities are so difficult to manage! They are everywhere. :(

Dark circles are yet another issue I have. Aren't they also called allergic shiners? They are more aggravating than anything. Many people with allergies cannot get rid of them. No matter what, mine seem to be there.

I have heard of people with late-onset Celiac. Some were in their 60s when it started. It is so strange how some of us were likely born with it, while others showed no signs whatsoever until they got to be senior citizens! :huh: I apparently had it from the beginning. Mom told me I spit up Prosobee as wel as numerous other formulas. She would not be surprised if I cannot have soy, either.

Dear Julie,

OMG! :o I am so sorry to hear you had another angioedema outbreak! :( Your tongue swelling up sounds absolutely horrific! Thank goodness you were prepared and had a Epi-Pen ready if needed. Something has got to be causing this. I wonder if you having Lyme has to do with it?

I knew you must have had another outbreak, because you have not been on for a while. Normally, you post several times per week. Hopefully, your body will give you a break over the holidays. We can all pray for that! Suffering on a daily basis is exhausting and depressing.

Dear Donna,

Maybe your system got too used to the turkey? That is what I am guessing. Perhaps your body becomes immune to the amount of tryptophan or other amino acids necessary for rest? It is kind of like with drugs, where you build a tolerance. This is only a theory, but I may research this to see if there is any information on it.

You and I must be twins! :lol: Chewy, hot chocolate chip cookies are also my favorite! They are so good! I wish I had one right now. Interestingly, I have not been craving sugar nearly as bad lately.

Stupid dark circles! I have those as well. I also am way too light skinned. When I was a child, I used to tan better. Now, I am incredibly pasty! Being Irish sucks! It is bad enough we have to have the highest likelihood of Celiac, but we have to be glow-baby white, too! :angry:

That is wonderful news about your neurotransmitters doing better! Those things can really make everything go haywire if they are not working properly. Serotonin is one that when unbalanced can contribute everything from Schizophrenia to Bipolar Disorder. In order for the brain to function properly, all of these chemicals must work in harmony. Too much or too little of any of them can cause extreme trouble.

Dear Andrea,

I did not know Lorka has a cookbook out! Where can I find it? That would be neat to look at. I am in the midst of trying to find substitutes for a bunch of intolerances. Many people have multiple intolerances, so it is important to include as many alternatives as possible. To make it even easier, I am going to color-code it.

Insomnia sure does seem to be a major symptom for Lyme patients. Since it messes up the endocrine system, this is no surprise. Hormones dictate everything in your body. Metabolism, sleep patterns, hunger, mood, and so much more is impacted by them. You never realize how important hormones are until yours are not working properly!

Food ruts are difficult to deal with. I am sort of in one myself as of late. Eating the same things all of the time and not knowing what to fix is frustrating. Having a limited budget for food does not help. I have been making a list of foods that I rarely eat or would like to try that I have never had. Some of them are pretty exotic.

I hope Mitch had a nice birthday! Did he enjoy his chili and pumpkin custard? They both sound delicious.

I have been eating Hormel Chili off and on. Dad makes great chili as well, but I am not sure I can eat it anymore because he may use some things I cannot have anymore.

Dear Kassandra,

I am having the same trouble with food that you are! :o Everything seems to irritate my system at one time or another. It is difficult to say what is causing the constant battle with my stomach. Dates may not be your trouble at all, it could just be something completely different. Sorry to hear the tortilla chips caused trouble.

Like everyone else, I cannot wait to hear about your LLMD appointment today! If we do not hear from you today, we might send a search party! Rachelville residents tend to panic when someone is MIA. That is just how we are! However, we do it out of love.

Your uncle's housekeeper/chef sounds like a really nice person! If only family members were as considerate. It would be so great to have someone cook for you for once. Having a personal chef would be a dream come true. Remind me to put that on my "When I Get Rich" list.

Being pale does suck. I wish I were darker complected. Toma's Tan Perfect is great stuff, but you do not hear about it anymore. I do not know if they stopped making it or what. When I had the money, I could buy it and put it on once a week and get as dark as my bronze goddess best friend!

The insomnia is like that with me, as well. I hate it! I was your age when it started. Accomplishing anything is difficult when you are sleep deprived. You can be thoroughly exhausted, yet not be able to sleep.

Dear Carla,

Maybe I have parasites, too! That might be why I am so pasty. I know if you have Candida, you probably have parasites as well. There is a scary thought. I doubt I have a worm, considering I am not stick-thin.

Dark circles are hard to conceal even with make-up. You have to apply it really well around your eyes.

Since I have acne, I have to wear foundation, concealer, and powder anyway. I get kind of a golden tone to my skin, so I have to get a honey shade. If I sit in the window on sunny days, I can get some color. :)

Dear Patti,

Thank you for the Glee Gum info and link! I hope it does not stick to my teeth! My teeth are very crooked. Chewing gum is something I have tried to stop, but just can't. The tangerine flavor sounds interesting. I loved Chicklets, so I know I will like this gum!

It is terrific to hear you are feeling pretty good. I know you struggled for a long time. Other food intolerances really could be a major issue with me. I wish I could afford to do the stool tests with Enterolab for the casein, eggs, and soy. Elimination diets are really complicated, and the Enterolab analysis would remove the guess work.

Is the new place beginning to feel like home yet? Christmas should help with that. Putting the tree up and the Christmas lights outside to decorate makes a house more of a home. This is your first Christmas in Pennsylvania! Aren't you excited?

I hope that test kit gets here on time, too. If I can do the blood draw next week, that would be ideal. Then, maybe I will get answers shortly after the new year. The daily misery really takes its toll on everything. Somedays, I get a lot done. Most of the time, I am lucky to have the energy to shower before needing to lie down and rest.

Dear Kristina,

Having to get yet another doctor would be scary. All you can think about is "Great, yet another moron I need to find so they can screw up and treat me like a lunatic and lab rat." Switching doctors is not something I do unless absolutely necessary. My holistic physician is definitely better than my last doctor, because I have not left her office once with a bag of pills. The last doctor I had was better than a drug dealer!

I could not leave his office without another pill I dreaded trying. My body hates pills. They either made me very sleepy, queasy, or did not do anything at all. Pills are poison. In fact, at least three of the pills former physicians made me try have been recalled.

You so welcome for the support! Who would not have a meltdown with all you are dealing with? I have days where I have mine. Sometimes the frustration gets to you, and in order to release the tension, you need to cry and scream. When you are feeling hopeless, this is the best place to be, because everyone knows where you are, and that you can be healed.

Thank goodness your gynological issues are better. Those are terribly uncomfortable. Plus, you did not have a panic attack! Good for you! That is huge in itself! I know what this is like, because I get extremely anxious anytime I have to go anywhere for an appointment due to my stomach issues.

What a bummer about the cranberry sauce! Regurgitation is definately best avoided whenever possible. Sugar irritates reflux in any form. At least you can have potatoes. I eat a lot of them, and pray I do not develop a sensitivity to those.

Dear Sherry,

I am glad to be posting regularly again! It felt strange not posting. Getting behind on here is never easy to deal with. Catching up is difficult. I was reading along, but had so much to reply to, I worried it would not all fit!

Those buckwheat noodles sound great! Let us know how the dumplings and other noodles come out if your cook makes them! In Japan, they call them soba noodles. Culinary experiments are always fun. Speaking of, I may try to make truffles using coconut milk or cream. I am still at a loss as to what margarine would have no casein, gluten, or soy.

Honestly, I would prefer an herbal Lyme protocol. Antibiotics will aggravate the fungal issues I have. I doubt anti-fungals would be welcome in my body. Food is not even welcome there. I hope you are able to continue your abx soon, but if not, there are alternatives.

According to your description, it sounds like the massage resulted in a Lyme flare. A lot of things are not encouraged during the menstrual cycle. You are also more likely to catch colds and such during that time. Asthma and other health issues tend to be worse when you have your period. That time of month seems bad for a lot of things.

Dear Everyone,

Well, due to my stomach and getting no sleep yesterday, I had to reschedule my tooth extraction for next month. Having these health issues makes doing anything so stressful. On the bright side, my dentist will give me more refills if I need them on my Amoxy. Despite how much it helped the pain in my head, teeth, and neck, the effect on my colon was quite rough. I wanted to wait until after the holidays to start them again, but do not know if I can.

That passing out feeling also improved while I was taking the Amoxy. So, it may be connected to the sinuses. Having a disconnected feeling is not good! I have been taking to probiotic called Florastor, and it has helped. It must be pushing out some of the yeast.

Working in conjunction with the lemon water and reduction in condiments with vinegar and sugar, I noticed my body odor is not nearly as bad. The food odor has improved as well. I have not been wanting sugar near like I was. I am not sure if the dairy was causing me to be addicted to the chocolate or what. I did a challenge with Reese's Peanutbutter Cups the other day, and they actually tasted too sweet. I do not even crave them anymore.

As far as the dairy goes, the Reese's have lactose in them. I was feeling rough yesterday morning. Maybe that was why. I had French Vanilla Cool Whip, which has no lactose but does have casein. There was some gas, but nothing out of the ordinary.

At this point, I am puzzled. Lactose seems to be the trouble, but cheese and some other things I was eating before were eliminated as a precaution. I do not want to go back to eating them, because cheese feeds yeast. Something else is, many shredded cheeses contain yeast. As badly as I would like pizza, my system is quite frail. Why mess with a good thing?

Sincerely,

Jin

CarlaB Enthusiast
Thanks Patti. I carried my epi pen around all day and was on stand by to go the ER, I also tried some homeopathic remedies too, but thankfully it didn't get to the point where I couldn't breathe. But it was super scary and I'm glad it's over :lol: .

Wow, that sounds horrible ... I'm glad it's over!

Sherry, my LLMD has me taking parsley and burbur for detox (they help a LOT) and Samento and Cumanda for the Lyme. Eventually I'll switch over to full-Cowden, but that will be when I don't react to Tindamax .... after this month's herx, I imagine that will be a while! I could still function during the herx, but I spent most of my time lying down and only did what I had to.

Today I'm getting off the Levaquin and starting the Rifampin .... I debated refilling my Levaquin and starting the new drug right after Christmas since drug changes usually leave me feeling bad, but then I decided it's been 12 weeks on the Levaquin and it's a drug with many possible dangerous side-effects (tendonitis), so I ought to get off it now .... hopefully the Rifampin won't make me feel too bad. Today is my last day of Tindamax for the month, so I should start feeling a little better tomorrow.

Anyone else REALLY excited to hear from Kassandra?!!!

AndreaB Contributor
I did not know Lorka has a cookbook out! Where can I find it? That would be neat to look at. I am in the midst of trying to find substitutes for a bunch of intolerances. Many people have multiple intolerances, so it is important to include as many alternatives as possible. To make it even easier, I am going to color-code it.

I'll message her over at D/S and ask her to pm you the info.

The chili was good........think I used too much coconut milk for the custard but it tasted good. :P

I forget what else I was going to comment on........oh yeah......I'm so sorry you didn't get that tooth taken care of. I was thinking about you yesterday. :(

Too bad the board was down last night. We don't even know if Kassandra had an opportunity to get on or not. I can't wait to hear about her appointment.

Also was waiting to hear about Rachel's mineral IV.

ami27 Apprentice

Just got back from my post-op check up with my OB. All is well again. So now we wait 3 cycles then we'll try again.

I stopped taking the Chlorella since it was causing my neck so much issue. My neck is back to normal now. It did get much better once I increased the dose, but I still had a little 'crick' in it so decided I'd just stop. I also decided to not take the Humaworm. I'm focusing on staying where I'm at and not stirring anything else up. I actually feel about 90% since just having the amalgams removed, 2 IV chelations, work I did on my adrenals and thyroid meds adjusted. I gave up coffee when I found out I was pregnant. I still haven't started that back up again. I'm sure that has to be helping my adrenals as well. So if I stay at this level I believe I'll be healthy for my pregnancy.

I'm happy to read about your progress Rachel, Carla and your daughter Chloe.

Julie,

I wanted to mention that I too used to wake up with my hands numb. That is one of the things that led me on this most recent path. I went to my doctor and she tested me for carpal tunnel. She said it wasn't that. Then she checked the stiffness in my neck. She said sometimes your tension in your neck can cause your hands to go numb. She didn't feel like that was my issue either. Then she mentioned if it didn't get better she would suggest an MRI. That's when I found the new doctors I was working with. After they adjusted my thyroid meds, removed my amalgams and did the chelation I have had no more problems with my hands going numb at night. I tend to believe it was the mercury that was causing my problem.

Jin,

I'm anxious to hear how your Lyme testing goes. Sorry to hear you had to postpone your tooth extraction.

Kassandra,

I can't wait to hear how your appointment went. I'm also glad you are finally getting the iron IV's you have needed.

CarlaB Enthusiast

I got a text from Kassandra about a half hour ago ... she said she was at the LLMD's office waiting! :)

Ami, glad you're doing better. :)

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,786
    • Most Online (within 30 mins)
      7,748

    Barbara762
    Newest Member
    Barbara762
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      @Manaan2, have you considered the possibility that she might be cross reacting to some food or foods that technically don't contain gluten but whose proteins closely resemble gluten. Chief candidates might be dairy (casein), oats (avenin), soy, corn and eggs. One small study showed that 50% of celiacs react to CMP (Cow's Milk Protein) like they do gluten.
    • Lily Ivy
      Gluten withdrawal is temporary, eat well!!
    • Manaan2
      I realize I'm super late in the game regarding this topic but in case anyone is still reading/commenting on this one-does anyone who is especially sensitive have their personal observations to share regarding Primal Kitchen brand?  My daughter was diagnosed almost 2 years ago with celiac and within 6 months, her follow up labs were normal and a year later vitamin levels significantly improving, but we are still battling GI symptoms; particularly, constipation, so much that she has been on MiraLax every day since she was 3.  We've managed to get her down to a half cap every other day but without that, she continues to have issues (when she has a known, accidental ingestion unfortunately it takes a lot more MiraLax and additional laxatives to help her).  I was searching for something else and found this and am wondering if anyone has any specific comments regarding Primal Kitchen.  I feel like we are so incredibly careful with diet, logging diet and symptoms to look for patterns (we've had multiple dieticians help with this piece as well), not eating out, contacting companies and of course, there is always room for improvement but I'm running out of ideas regarding where her issues could be coming from.  Even if the Primal Kitchen is contributing, I'm sure it's not the only thing contributing but I can't help but think there must be handful of things that are working together and against her.  The ingredients list distilled white vinegar, but also white wine vinegar and balsamic, then "spices" which I'm always cautious about.  However, after contacting the company, I felt more comfortable allowing her to consume their products but over time I've realized that the front-line customer service support people don't always provide the most accurate of information.  Thanks for reading to anyone that does.   
    • Bebee
      Thank you knitty kitty!!  I appreciate your help and knowledge!
    • knitty kitty
      Welcome to the forum, @Bebee, Yes, Celiac Disease has genetic commonalities with MS, hypothyroidism, arthritis, Reynaud, and rosacea.   Usually a gluten challenge is done before endoscopy with biopsies taken,  however I would not recommend a gluten challenge before endoscopy with biopsies for you since you have been gluten free for so long and have so many concurrent autoimmune diseases.   You can still have the endoscopy with biopsy samples taken now.  After several months with dietary changes, you can have another to compare results and check that intestinal health has improved.   You can get a genetic test for Celiac disease which shares genetics with other autoimmune diseases that you have.  Eating gluten is unnecessary for genetic tests. For the rosacea, get checked for SIBO (Small Intestinal Bacterial Overgrowth) that could be causing gastrointestinal symptoms as well as causing skin issues.  Our skin is a reflection of our gastrointestinal health.     Following the Autoimmune Protocol Diet has been helpful in keeping my own rosecea, eczema, and dermatitis herpetiformis and other autoimmune diseases in check.   Be sure to be checked for nutritional deficiencies that occur easily in gluten free and dairy free diets. Keep us posted on your progress! References: Clustering of autoimmune diseases in patients with rosacea https://pubmed.ncbi.nlm.nih.gov/26830864/ And... Celiac disease and risk of microscopic colitis: A nationwide population-based matched cohort study https://pubmed.ncbi.nlm.nih.gov/36939488/
×
×
  • Create New...