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Omg...i Might Be On To Something


Rachel--24

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NoGluGirl Contributor

Dear Susan,

I go around saying that quote from Seinfeld all of the time, too! :lol: It is a lot of fun to say! I forgot about the rescue signal, though! :lol: That was so funny! It was a terrific episode!

I hope Tika and Stinker feel better soon! Hopefully, the test results will come in soon. Then they will have answers and can treat your furry babies! Annie sounds really sweet. She reminds me of the Schnauzers we had growing up. They were like Annie where they would always be there to comfort you if you were sick or sad.

Dear Patti,

Could it be DH? I get blister-like zits. I thought they were zits. Now, I think it could be DH. That would make sense.

Sincerely,

NoGluGirl


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NoGluGirl Contributor
OMG now I am ROTFLMAO because you all thought pipcs were something. we might have to make them something. HMMMM...what WOULD a Pipc look like. Must think about this.

Chrissy- I am SO sorry about your neuro. LAME! My first appt with my LLMD was 2 1/2 hours. He gave me a 5 page write-up just from that! My next appt to go over my results is 1 1/2 hours. These docs DO NOT kid around. Just wanted to say HUG :wub: :wub: :wub:

Oh and I have a GI that DOES listen to me. Stereotypes and all, I MUCH prefer female doctors. They actually listen and don't seem to have such a god-complex. Not true across the board but this has been my experience. All my docs, except Dr Lyme, are female.

Donna- I want to hear you sing...........................I've always wanted to sing!

OK- two goals for the near future:

1. Write lyrics to a theme song for rachelville

2. new avatar of me dressed the way I'm SUPPOSED to dress this summer :ph34r: I was just walking through my backyard singing "Tick tick tick tick".

What am I going to do...REALLY? I love being outside and I live in Lyme Central. Actually, knowing me, I have probably been infected more than once. I think one time was when I got into a brawl with a rat in Lyme CT. She was drunk and trying to steal my date so I gave her some whooparse. She bit me AND stole my date. BIACH.

OMG- I think I am giddy. I'm cracking myself up which is pretty rare. :ph34r::P

Dear Bev,

ROFLMAO! :lol: That is all so hilarious! You wanna hear something even crazier? I knew what you meant with pipcs! :lol: I knew exactly what you meant! I figured it was a typo. I sort of got confused at first, but realized what you were talking about.

I love to sing as well. I dance, compose, sing, write music, etc. I wish I could play the electric guitar! That would really help me! Songs sound better when they have music with them!

I can just see you and that rat tumbling around! :lol: Whooparse is deserved in certain cases!

I say she was one of those cases! :lol: You should have smacked her good! She is a ho!

Sincerely,

Jin

dlp252 Apprentice

Gosh Patti, the first thing that came to my mind was also hives, but I think those are bigger aren't they. Do they look like little blisters...DH maybe?

All you musical people...I can't read a single note of music, lol. I have to learn it by hearing it. Not very easy.

AndreaB Contributor

Donna,

I'm sure you'll do fine. :)

We all, I've decided to cancel getting my amalgams/crowns done this year. I don't want to chance thing with Seth for one and I really need to apply the money to current bills. With prices going crazy, :angry: I don't need the added stress of an already far short food budget. Obviously if I need to have a crown done before next year we'll deal with it and go see the dentist in Eastern Washington.

I may still have a challenge done with Talitha, but hubby and I will have to discuss it. :unsure: Mitch thinks we both could benefit from chelation. I won't do any challenge or chelation until my teeth are taken care of though. We are eating organic and though my allergies are bothering me I think they are a little better than last year (so far). We don't eat gluten or dairy which are the two big problem foods, nor do we eat soy (which we think is a big problem food :P )

I started taking selenium every other day (started Tuesday). If Seth's eczema doesn't clear up then I can suspect that and go back to the chlorella. Still won't get my teeth done yet though. It's a hard decision to make but I think it's the right one right now. Carla, I think you've already said that. :P

jerseyangel Proficient

Andrea,

I think your decision makes a lot of sense. Sorry I didn't weigh in--when Matt got home he needed to use the computer.

That song is perfect for us! :D Love it!

I spoke to Judy a while ago, and we both think it's a reaction to the seeds in the trail mix. That's the only thing that makes sense. I wasn't outside long enough to get bit this many times, and I was just in and out of the car. Plus, they were appearing today out of nowhere. Thanks for all your thoughts :)

I just heard that Rosie quit The View and won't be back--in case anyone's interested :P .

CarlaB Enthusiast

Patti, just to be sure, check your bed for spiders!! ;) I guess it's from having had the sensation that bugs were crawling on me, or maybe it was from living in a very small place while our house was being built 8 years ago (it had maybe 900 sq. ft.). It was impossible to keep the spiders out of that small place ... anyway, I still check my bed for spiders every night! It didn't help any that I found one there about a year ago! :lol:

Maybe these OCD tendencies will go away with the Lyme.

It very well could have been the seeds. You are sensitive to many things.

Andrea, sounds like a good decision on many levels. I definately would not have that kind of work done while breastfeeding. I remember that my ob/gyn wanted me to have mammograms done early because my mom had breast cancer, but I was always breastfeeding or pregnant! LOL

jerseyangel Proficient

It's definately coming from within...I just had more raise up on the inside of my arms. I'm feeling itchier--I took a Claritin a while ago. Helped maybe a little.


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Clark Bent as Stupor-Man Contributor

quick question for you lyme experts... I started minocyline on Saturday and took 2 each day on Saturday and Sunday... stopped it on the advice of my dr. on monday due to the bad rxn I was having... my dr. said to start it back up at half the dosage after the symptoms subside... 5 days later, I'm still having the symptoms, less severe than on Sunday night into Monday but probably equal to how I've felt since Tuesday... my body just feels so ridiculously heavy like gravity is pulling me down 100 times more than normal... I don't even know exactly what my question is, but anyone have any advice or insight as to why I'm still feeling like this after stopping the meds on Sunday?

CarlaB Enthusiast

Charlie, sometimes when I start on a new med I feel a little worse until after the first herx, my regular herx that happens every 24 days.

I always take the medicine through the bad feeling unless I think it's a reaction to the medicine and not a Lyme flare. I'd bet you're just reaching the bugs. It's very common for people to feel worse before they feel better.

Recently, I had a one week break from the medicine and felt the BEST I've felt in YEARS. When I started back on meds, I was sluggish again, but still better than I felt before I started the meds.

I guess my point is, I'm not shocked and I think the reaction is pretty normal. If it were me, I'd ease back into the medicine. If it's too much of a problem, maybe it's the wrong treatment for you.

I'd say you're still feeling bad because you stirred up the bacteria. This nightmare started for me after a 21 day round of doxy ... I never recovered because it stirred up my almost asymptomatic Lyme.

Clark Bent as Stupor-Man Contributor
Charlie, sometimes when I start on a new med I feel a little worse until after the first herx, my regular herx that happens every 24 days.

I always take the medicine through the bad feeling unless I think it's a reaction to the medicine and not a Lyme flare. I'd bet you're just reaching the bugs. It's very common for people to feel worse before they feel better.

Recently, I had a one week break from the medicine and felt the BEST I've felt in YEARS. When I started back on meds, I was sluggish again, but still better than I felt before I started the meds.

I guess my point is, I'm not shocked and I think the reaction is pretty normal. If it were me, I'd ease back into the medicine. If it's too much of a problem, maybe it's the wrong treatment for you.

I'd say you're still feeling bad because you stirred up the bacteria. This nightmare started for me after a 21 day round of doxy ... I never recovered because it stirred up my almost asymptomatic Lyme.

you're referring to a round of doxy you had a couple years ago and not ABX you took when you started treating lyme, right?

I'm thinking along the same lines as the most likely possibility... not that my lyme was entirely asymptomatic and dormant as I feel it's likely connected to my neuro and some physical problems, but that the rxn I'm having is probably connected to the lyme being stirred up in some aspect... and I guess the longer these symptoms last, the more likely that is the case as an adverse rxn to taking 2 days of ABX would probably not last too long before dying down... I think it's still a possibility that I just had an adverse rxn to the med itself or something in it, but that's probably less likely each day I still feel like this...

I still don't know if I can handle the mino though... I just haven't seemed to handle too many meds/supplements in the past year that may be effective but are just too much for me to take... was that way when I tried treating the candida with an antifungal and I have a feeling the mino, though possibly quite effective, may be too strong of a med for me to start on... but I can discuss that with my dr. next week based on how I feel upon restarting the mino at 1/2 the dosage, assuming I restart it this weekend

CarlaB Enthusiast

Yes, doxy prior to the Lyme.

My LLMD's assistant told me the bugs do get stirred up when you start the meds ... I know mine did. I'd start on half the dose and try to hold out through it.

Drink some lemon water. It helps some as it alkalinizes the system.

Be sure to get more rest than usual, not just sleep, but rest as well.

Are you doing anything do detox? I have a far infrared sauna and it helps a lot, especially during a herx. I also take many supplements for detoxing ... recommended by my LLMD.

You can expect to feel worse for a while after starting the meds. You might try posting on Lymenet about it, too ... the people there are pretty experienced and will be able to assure you that it's perfectly normal to feel bad as you start the meds.

Clark Bent as Stupor-Man Contributor
Yes, doxy prior to the Lyme.

My LLMD's assistant told me the bugs do get stirred up when you start the meds ... I know mine did. I'd start on half the dose and try to hold out through it.

Drink some lemon water. It helps some as it alkalinizes the system.

Be sure to get more rest than usual, not just sleep, but rest as well.

Are you doing anything do detox? I have a far infrared sauna and it helps a lot, especially during a herx. I also take many supplements for detoxing ... recommended by my LLMD.

You can expect to feel worse for a while after starting the meds. You might try posting on Lymenet about it, too ... the people there are pretty experienced and will be able to assure you that it's perfectly normal to feel bad as you start the meds.

thanks for all the advice... I'll probably post something on lymenet over the weekend... I've read a lot of info there recently, just haven't posted yet...

I'm not really doing anything to detox... aside from maybe something like exercise/physical activity, which I'd be inclined to think would aid in detoxing stuff out of your body... but this is one thing I've wanted to look into the past week or 2, just haven't had a chance... you know of a website or post that has good, specific information on aiding in the detoxification process while treating something like lyme?

Rachel--24 Collaborator
I'm thinking along the same lines as the most likely possibility... not that my lyme was entirely asymptomatic and dormant as I feel it's likely connected to my neuro and some physical problems, but that the rxn I'm having is probably connected to the lyme being stirred up in some aspect...

Charlie,

My guess is that you've stirred up Lyme and other toxins. I'm not even on antibiotics but when I do stuff to stir up toxins I can stay symptomatic for several days. This happens from doing even the minor detox stuff...as well as taking detox supplements, Nystatin, the sauna I had, etc.

If you are doing other things alongside the antibiotics it can add to it. Even the excerise you're doing can stir up toxins. Anything meant to help detoxify can loosen up toxins stored within. The antibiotics would stir up alot more than what you're used to...so you would feel worse.

Also...Lyme and its buddies (mercury, parasites, candida, etc) dont live in seperate worlds in our bodies. They hang out together. When you stir one thing up...you stir everything up. I had read that somewhere and I try to remind myself of that all the time. Its easy to forget that and think that when your taking something like Nystatin...you're only touching yeast. It doesnt happen that way though.

Same with antibiotics....they may only be targeting Lyme...but in the process of stirring up Lyme....you're stirring up the whole toxic environment where these guys are thriving.

CarlaB Enthusiast

Charlie, my LLMD has me on a lot of immune support -- supplements -- vitamins, minerals, Oncoplex (broccoli sprouts), Host Defense (mushrooms), etc.

I would suggest looking at the Burrascano guidelines for the supplements he recommends if your LLMD hasn't recommended any. When you start them, first wait till you've been on the mino for a while, then start no more than one new one every three or four days to watch for reaction.

I could take a lot right away, but oddly enough, I was taking almost the same supplements on my own as Burrascano recommends, so my system was used to them.

Rachel's right about exercise, too. It raises your body temperature and brings oxygen to the bacteria. I exercised a lot prior to starting meds, so it hasn't been bad for me. If you exercise now, continue, if not, start slowly.

I really recommend the Burrascano guidelines. It's a great overview of treatment, detox, etc. You can find it on Open Original Shared Link. I think detoxing properly is the single most important thing in being able to handle the treatment. If you can't get rid of the dead bacteria, you will feel bad.

Rachel--24 Collaborator
I think detoxing properly is the single most important thing in being able to handle the treatment. If you can't get rid of the dead bacteria, you will feel bad.

Yup. Totally true...you gotta be able to get rid of the toxic waste or you'll feel....well....like toxic waste...GARBAGE. :P

Judyin Philly Enthusiast

DID IT AGAIN -------- :ph34r:

WILL I EVER LEARN???? :blink: JUST DID LONGGGGGGGGGGGGGGGGGGGGGGGGG DR APT UP- DATE AND LOST IT ALL WHILE CHECKING SOME SPELLING.

I'M TOO TIRED AND MAD TO WRITE IT ALL OVER AGAIN TONIGHT.

IT WAS A WONDERFUL VISIT AND I STARTED ON THE RIFAXIMIN TODAY FOR SBIO. TAKEN 2 DOSES SO FAR SO GOOD. HE'S ON CALL THIS WEEKEND AND TOLD ME TO CALL IF IF I HAD A PROBLEM.

I DID A LYME TEST AND IT WAS SENT AWAY AND SHOULD GET RESULTS IN 5 DAYS. NO IT WASN'T WITH Igenex...AND THAT'S A LONGGGGGGGGGGGGGGGGGG STORY.

WROTE 2 REFERALS FOR MORE MLD..PT...THANKS GOD AND ONE FOR THE NEW GI WHO DID THE HYDROGEN BREATH TEST. WILL CALL TO SET UP APT TO SEE HER ASAP AS 10 DAY DOSE IS DONE.

IT WAS A DAY OF COMING TO TERMS WITH MY NEEDS AND PUTTING MY TRUST IN THIS DR. WHO HAS FOUGHT MANY HMO FIGHTS FOR ME OVER THE 25 YEARS I'VE BEEN SEEING HIM.

HE'S BRIGHT, KEEPS UP WITH CURRENT RESEARCH AND IS ABREAST OF NEW CONCEPTS.

HE SAID WE WILL GET TO THE BOTTOM OF WHY I'M NOT 100%. I TRUST HIM AND RIGHT NOW...IT'S WHAT I NEED. IF YOU HAVE QUESTIONS...PLEASE MESSAGE ME. I'M JUST SICK I LOST IT ALL AS SO MUCH DETAIL WAS THERE.

THANKS TO ALL OF YOU WHO HAVE BEEN SO SUPPORTIVE OF ME WHILE I TRY TO HEAL.

I APPRECIATE YOUR CONCERN AND SUGGESTIONS MORE THAN YOU WILL EVER KNOW

LOVE YOU ALL --JUDY

AndreaB Contributor

I'm glad you posted over here Judy.

We'll be waiting for your results and long story when you feel up to telling it.

Keep us posted on the SIBO to please.

Love and hugs. :wub:

Rachel--24 Collaborator

Ok....so I am WAY freakin toxic!! :blink:

Not like thats any kind of shocking new development or anything...but yeah..I'm a toxic dump site. :rolleyes:

I'm realizing that ANYTHING I do to try to detox stirs up a whole lot of stuff. No wonder I wasnt doing well on supplements <_< ....aside from the intolerances I think anything that is meant to promote health or detoxification moves stuff around and gets me sick. :(

After the sauna I had all that nausea, burning eyes, skin and tongue. Also some swelling and throbbing in my head.

It was pretty much the same thing with the chlorella...too much for me to handle...especially both of them together.

So I get the same symptoms from my Nystatin...some days its mild and other days more severe....depending on how toxic I'm already feeling.

I started my coffee enemas (yeah, I know TMI :ph34r: ). Just dont look at my picture as I talk about enemas...OK?? :ph34r:

Anyways.....major burning of eyes, mouth, swelling of head, nauseusness, etc. It started out minor but worsened as I did it for 3 consequetive days.

So then I went ahead and did my first castor oil pack. OMG....it was even worse than the enemas. Now I'm realizing its an accumulation of all those toxins being mobilized. Coffee enema especially stimulates the liver to dump toxins....and I imagine not all of them are getting excreted.

I *think* the symptoms I get (the burning and swelling)....are histamine reactions. I think once the toxins start mobilizing and floating around...my immune system responds...increasing histamine.

I'm pretty much always in this state to some degree but yeah...exposure really can set things off making it worse. Whether its perfume, foods, my own adreneline (hormones etc.) and apparantly even the process of trying to remove some of these toxins.

I rested my body for a few days but didnt feel much better...then realized I had forgotten to take my charcoal for a couple days. :o

Taking the charcoal helped alot. I dont know how I managed the past few years without it.

Ever since I had to say goodbye to my ice cream (I still stare at it in the freezer though :P ) I've been more constipated. The ice cream for some reason totally made me regular. :huh:

I'm getting alot of fiber now...from oatmeal cookies and stevia. It might be too much fiber?? I saw Donna mention something about this. :unsure:

Anyways because of the constipation I went back to enema to clear out stuff....I'm on nystatin, cats claw and noni...and I dont want dead bugs hanging out. Got enough problems with toxins...thank you very much. :P

All I'm doing now is plain warm water enema...and STILL...the same symptoms of burning eyes, mouth, swelling, extreme nausea, etc. I do 2 consequetive enemas and its the second one which really gets stuff loose...and this is when I start getting symptoms....but at the same time I'm also getting rid of alot of garbage.

I dont feel toooooo bad talking about this since Donna's real good about discussing her episodes of "D". :lol:

Thanks for making this easier Donna. :P

I told my friend that I must be just incredibly toxic and also incredibly sensitive to these toxins....hence all the immune responses. :(

In the past I would have stopped what I'm doing....thinking I'm making things worse. Now I'm thinking I'm doing the right thing in getting rid of stuff but I'm just gonna continue having these reactions until my immune system isnt so overwhelmed anymore.

Getting rid of the mercury is the main thing but maybe getting all this other garbage out first will really help with the mercury detox.

My friends that I've talked to about it say that yeah...I need to push forward with this.....that I didnt feel good when I was accumulating all this poison and I'm not gonna feel so good trying to get rid of it either.

I'm gonna just stick to the more mild detox stuff...little at a time...alternating these things and then when (or if) I stop getting these symptoms I can try supplements and some of the other stuff I havent tolerated so far....like the chlorrela.

What do you guys think?? I'm thinking I'm in the range of really high toxicity considering most people dont throw up after the saunas or get these symptoms from a plain enema. :unsure:

CarlaB Enthusiast

I think it's a good idea to do some detoxing, Rachel. Keep it slow enough that it's not too uncomfortable, but do enough so that you know you're accomplishing something. You might even take a few days' break once in a while.

The chelator that my doc gave me says to take it Mon.-Thurs. only. That gives Fri.-Sun. to rest. That might be a good idea for you, too. Give yourself a few days to catch up.

Yeah, it's pretty much not normal to toss cookies after a sauna. :P The sooner you get detoxing, the sooner you feel better, but don't Rachel it either! :lol:

Rachel--24 Collaborator
THANKS TO ALL OF YOU WHO HAVE BEEN SO SUPPORTIVE OF ME WHILE I TRY TO HEAL.

I APPRECIATE YOUR CONCERN AND SUGGESTIONS MORE THAN YOU WILL EVER KNOW

LOVE YOU ALL --JUDY

Judy....how frusterating that you lost all that info. :angry:

I hope you can share some of it again...even if its just in bits and pieces.

We're here for you...as always!!

I'm happy you trust your Dr. and are getting some testing done. I'm glad you're getting the Lyme test....even if its not Igenix. If this one is negative you can still do Igenix next time. ;)

Always thinking of you. :wub:

Rachel--24 Collaborator
Yeah, it's pretty much not normal to toss cookies after a sauna. :P

ROFL.. :lol:

Yeah....that weekend I googled the heck out of "sauna and vomit" "sauna and throw up" "sauna and puke your guts out" :lol:

and I came up with NOTHING. :blink:

OMG...that never happens...I can always find something....but this time I came up empty. :o

I'm gonna do what you said and take days off for resting my body. There will definately be no racheling with this stuff. ;)

Judyin Philly Enthusiast

ANDREA..THANKS SO MUCH FOR BOTH POSTS

RACHEL..STILL CAN'T BELIEVE HOW AWFUL YOU FEEL.

I'M SO SORRY AS YOU ARE TRYING HARDER THAN ALMOST ANYONE ON HERE TO HEAL.

GOD WHAT A GROUP WE ARE :ph34r:

BUT..........I CAN SAY WITHOUT A DOUBT..... AS MY DR AND I WERE 'LOUDLY AND RESPECTFULLY DISCUSSING''' :lol:

THESE FRIENDS I'VE MADE HERE ==WHERE I'M GETTING MY INFO AND HELP ARE THE MOST INTELLEGENT...BRIGHT...INQUISTIVE RESEARCHING ....(LIKE A DOG WITH A BONE)---WOMEN I'VE EVER HAD THE PLEASURE TO GET TO KNOW.

PRAYING FOR YOU RACHEL...YOU DESERVE A BREAK AS I THINK I'VE WRITTEN A THOUSAND TIMES.

LOVE YOU KIDDO.

UNCONDITIONAL LOVE........WHERE IN THIS BIG WORLD DO WE FIND THAT THESE DAYS BUT HERE AND FOR ME...D/S

NITE AND AGAIN...THANKS...

DingoGirl Enthusiast

RACHEL! OMG - - your scientificness is slipping! :lol: Just put in "sauna + nausea" and you will get 140,000 pages. Yup! check it out.

JUDY - - - - HEINOUS!!!!! :angry: I"ll check DS tomorrow to see what happened.

Hugs and love to all. I am so worried about my Stinker. more sideways/falling/tilting than ever, and of course she decides to do this on a three-day weekend. Well, there's nothing life-threatening, nothing terribly urgent, I just don't like to see her this way.....

had much more to say, dingo'd all of it.

hugs and love to all.

xoxo

AndreaB Contributor
What do you guys think??

I think that's a good plan. The one thing I'm concerned with is blocking your pathways. I assume you'll be able to figure that out depending on how you're feeling.

Can you get into Bioset to clear pathways when you need to? :unsure:

Rachel--24 Collaborator
RACHEL! OMG - - your scientificness is slipping! :lol: Just put in "sauna + nausea" and you will get 140,000 pages. Yup! check it out.

Yeah...but I really only wanted to know if its normal to "toss cookies" (as Carla so graciously put it :lol: ) after the sauna??

Apparantly it only happens to me. :rolleyes:

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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.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
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