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Omg...i Might Be On To Something


Rachel--24

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happygirl Collaborator

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dlp252 Apprentice
Yeah....she totally could have scheduled all of my appointments when I paid for them....she just didnt WANT to. Then tonight she told my mom on the phone that I should have just scheduled all of my appointments ahead of time....to AVOID this. :blink: I'm trying not to get overly upset.....trying to take miamia's example and put it all behind me...I think I'll have to sleep it off. <_< The recptionist is young....she NEVER seems to wanna be bothered with anything. I should have pushed the issue about scheduling the appts. but instead I took her word for it that it wouldnt be a problem. Thats the LAST time I do that. <_<

As far as the parking situation....I asked her if it was gonna be like this from here on out. She said no...its just because today is "Black Friday". I'm thinking parking is still gonna be difficult....maybe not like today but definately its gonna be more crowded then ususal. I'll probably have to deal with the same thing trying to make my appt. tomorrow.

I didnt expect that mall to be crowded like that....I would expect it to be heinous at Valley Fair....but not there. Guess I was wrong. :blink:

Oh well...when you get back from the cruise I'll give you an update on the parking situation.

That's a good idea...getting upset doesn't really do anything except make us feel worse! I hardly ever go to malls anymore aroud Thanksgiving/Christmas unless our group is singing at one, lol...just don't know what it's like. Two years ago, we sang at Oakridge mall late in the afternoon...I thought parking would thin out by then, but it was HEINOUS!!! We had to park across the street in an insurance company parking lot! Thanks for offering to be my parking lot correspondent! :lol:

Thanks for the update on Andrea by the way.

dlp252 Apprentice

Yay for Laura and eating more foods and gaining a bit of weight!

Hum, I am more emotional in some ways, but more emotionally dead in others. I tend to get upset a lot over little things more lately...not sad crying upset, I mean MAD. (Although I did cry at work when a co-worker teased me about something.) I spent the last two months in anger h*ll, lol. I do cry at commercials and stuff when I'm alone. :ph34r: I'll cry over a choir song I'm learning, or a thought that will come into my head. :lol: I DO think it's probably a good thing I live alone though because I could totally see it being really hard for that person, and I probably would cry more than I do! Sometimes I feel like I don't even have the energy to cry anymore. One thing is for sure though, I am not a good sick person...I am no joy to be around when I'm sick! And, I do think I tend to take things more personally when I'm not well...my reaction just varies from sad to anger and anywhere in between when that happens.

Julie-thanks for asking, I am sleeping better. Since I've been taking that second supplement (the valerian root), I've been waking up several times a night, but going back to sleep eventually each time.

CarlaB Enthusiast
Especially if I am not feeling well sarcasm of any kind is the last thing I need. I also feel like there is some truth to it and it really gets to me even if its obviosly meant to relieve tension it seems ot just cause more. (I hope that makes sense)

This makes perfect sense ... it's the same thing that bothers me! If it's not how they really feel, there wouldn't be the "material" for the "joke." I used to be able to laugh at my faults, too.

Laura, YAY on the weight gain!

Julie, I know Luke's dad is a hottie!! :rolleyes: So, I guess Luke probably is, too. :lol: Thanks for the compliments. I cooked forever, too, but now have Morgan to help. :)

rinne Apprentice

###

Laura, I'm so glad that you have gained back some weight.

Donna, I am glad to know that you are sleeping better. I have plenty of experience with not sleeping and have found it one of the hardest things to deal with.

I heard a great description of Lyme, it goes: It's like having a talking frog that only talks when you are alone in the room with it, you know it is true but try to prove it. :lol:

dlp252 Apprentice
I heard a great description of Lyme, it goes: It's like having a talking frog that only talks when you are alone in the room with it, you know it is true but try to prove it. :lol:

:lol: If that's what I've got, it's certainly true.

rinne Apprentice

I know that frog talks to me all day long. :lol:


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Green12 Enthusiast

Hello girls :D

Just passing through and wanted to ask if there was a link, or source, of where to find LLMDs in every state? I did a quick search but didn't come up with anything specific.

I did however find this link:

Open Original Shared Link

I found it to be a fascinating personal story, I apologize if it has already been posted before.

Hope everyone has a great Saturday :D

Green12 Enthusiast
Julie-

I have been thiking about you too. Any news with the igenix test.? Have you ordered it yet?

Hi miamia :) Hows your day going today, feeling any better? I usre am hoping so. No news on the Igenex testing, I tried to get the test kit ordered today but they are out of the office, I guess it is the weekend :lol: Will do first thing Monday morning. Then I have to figure out how I can get an MD to sign it.....

Laura, that's great on the weight gain. Woo hoo! Hope that stays steady for you :)

Patti, that tea sounds wonderful. I have to tell you I followed your suggestion and made my gravy with potato starch, it came out great!! I will never go back to rice flour again. Thanks for putting that tip out there :) Have fun putting up the Christmas decorations today. I just love this time of year :D:D

Donna, glad you have noticed slight improvements with your insomnia, hopefully that will continue to improve with time. :)

Rachel, there probably shouldn't be clouds, but for some reason there are. I guess I go back to the onion theory again here, you didn't get to this point over night, lots of complex, complicated things going on in you body and as you desesitize it's like working at peeling back one layer at a time, only to reveal a deeper layer underneath. If that even makes sense. Just hang in there :) Hope today is better for you and I look forward to hearing about your appt.

Does anyone else get reflective this time of year? I don't know what it is but every year at this time I deeply reflect on the state of my life, where I am, where I am not, where I want to be. I get super emotional too. There was a switch though for me, I just woke up today with a fire in my belly :lol: I just want to take my life back!!!!!!!!! I am so tired of being ill. Just thought I'd share.

dlp252 Apprentice
Just passing through and wanted to ask if there was a link, or source, of where to find LLMDs in every state? I did a quick search but didn't come up with anything specific.

I have one bookmarked at work, but not here unfortunately...it was from a link that Rinne posted a while back, so if no one has posted it Monday morning, I can from work.

Does anyone else get reflective this time of year? I don't know what it is but every year at this time I deeply reflect on the state of my life, where I am, where I am not, where I want to be. I get super emotional too. There was a switch though for me, I just woke up today with a fire in my belly :lol: I just want to take my life back!!!!!!!!! I am so tired of being ill. Just thought I'd share.

You go girl! :lol: I think we are all fighters here but I think we sometimes just forget to remember that. :lol: I do get reflective around this time...what reflected wasn't so pleasant this time, lol.

Hi Debbie, thanks for the chuckles, lol! :lol:

rinne Apprentice

Julie, thanks for the link to Wild Condor, what an incredible story.

happygirl Collaborator

x

Rachel--24 Collaborator
any opinions?

Yeah...I got some :D ....first I have to calm down enough to reply. I'm at home....spazing out....cant stop dancing.

Be back after this song and after I read the link. :)

happygirl Collaborator

x

Green12 Enthusiast
I'm at home....spazing out....cant stop dancing.

That has to be a good sign, I take it today is a better day?

:lol::lol:

Laura, I will read it and come back as well

Rachel--24 Collaborator

Laura....YES...I agree with what is written here. It goes back to the "onion layers" that Julie and I have talked about. What my Dentist had told me over 2 years ago....there would be no ONE reason for my illness. When I asked the BioSET lady if Lyme could have done all of this to me....her answer was NO.

My doctor said the same thing....immune dysfunction leads to a multitude of problems....they must ALL be addressed to become well again.

Q.Do you think chronic Lyme exists? A. Yes, I certainly do. As early as 1985 I diagnosed and treated an occasional patient with Lyme disease. Based on that experience, I am convinced that the Borrelia burgdorferi bacteria that cause Lyme disease can persist and cause chronic or recurrent symptoms. I also believe that chronic Lyme is the ringleader in many other illnesses, especially when symptoms of immune dysregulation exist.

I also agree that Lyme is the "ringleader". Because the bacteria is smart and evasive, because the doctors are ignorant, because the tests arent good enough....for all these reasons the bacteria is allowed to go undetected and untreated. It only makes sense that something that is this "stealthy" and dangerous is gonna cause the immune system to go haywire in some individuals. Its creating so many *other* secondary problems the immune system gets overwhelmed, overworked and probably downright confused.

I read somewhere that its almost like when someone becomes infected with Lyme....once it enters the body....it completely disappears....not showing up in tests....but yet wreaking HAVOC. This is evident in those individuals who have seen the tick....developed the rash and flulike symptoms....which then progressed into every classic symptom of Lyme Disease......but they test negative for Lyme.

From what I've learned during my time on this board and many other boards...I came to the conclusion that MANY of us are dealing with more than just ONE illness. If you vist the Lyme board you will notice that many are on a gluten-free diet, some have Celiac Disease....others have Fibro...thyroid disease is common on EVERY health board I visit.

Candida boards....these people are the most "lost" in my opinion. They are fighting a symptom of something that they are completely unaware of....and NONE of them get better. I would not be surprised if most of them had Lyme Disease. Candida overgrowth is occuring in these individuals because they have weak immune systems and immune dysfunction. Many of them discover they need to avoid wheat....some go completely gluten-free.

Gluten intolerance/Celiac is something I notice being discussed on every health board I visit. I dont think gluten intolerance is what is creating all of these health issues as Enterolab suggests. The proof is evident in the fact that if you've spent some time on this board you will notice that so many with gluten intolerance go on to continue having a multitude of symptoms. If the problem is truelly gluten.....then once the diet is implemented recovery should be set into motion. Instead the removal of gluten in some of us leads to the development of more and more *other* intolerances or dysfunction of other body systems.

Celiacs who recover completely from a gluten-free diet obviously arent dealing with other issues. The reoccurring theme I'm seeing on so many boards is that people focus on just ONE thing and blame EVERYTHING on that ONE thing. A Celiac who continues to develop more and more neurological symtoms or other conditions such as Fibro, CFS, etc....more than likely has *something* else going on. Alot of people think that gluten has caused all of this but I'm not really believing that anymore....I think they are missing something.

Celiac can be one diagnosis and we can be so relieved to get that answer and put everything into it.....expecting to have a complete turnaround....when in fact the Celiac is *only* present because of the immune response becoming triggered by an "unknown" infection.

I was in *perfect* health and now I have had autoimmune thyroid disease, gluten intolerance, multiple chemical sensitivities, candida, food intolerances.....all of these things are caused by immune dysfunction. What is behind it all??? I think THAT is the key question that alot of people dont ask themselves. I dont think our bodies just breakdown on us one day for no good reason.

I know I've said all this before but I just believe in it VERY strongly. I hate to see people who are sick spending all of their time on ONE diagnosis and not improving. I see it on the Lyme boards too....people *just* treating Lyme and not getting better. What about co-infections? What about *other* diseases that have developed due to immune dysfunction and stress on the body CAUSED by having Lyme?? What about Celiac Disease??

It seems like all of these things are related. Here on Celiac.com many people say their disease was triggered by Mono. If you visit the Lyme board many over there will say that Mono brought out their Lyme....making it progress much more rapidly....yes, that can happen but maybe at the same time another disease was triggered??

All I know is that the immune system is very complicated and Lyme seems to cause it to become very active and very confused as to what it is fighting. I believe Lyme is enemy #1.....but along the way other things become enemies as well....including gluten. Heavy metals is another thing that is proven to have a BIG role in all of this and in contributing or causing immune dysfunction as well.

In some ways I think I am lucky to have learned quite a bit about(in order) thyroid, mercury, candida, gluten, chemicals and other nasty stuff in food and THEN learn that I most likely have Lyme. I know I cant ignore any of these things if I want to regain my health. One diagnosis doesnt cancel out the others but I think finding the enemy #1 will put a stop to an ever-growing list of ailments.

Have you seen the huge lists of diagnoses in some of the signatures?? I have to wonder about this. <_<

miamia Rookie

Julie-

This time of year does make me very reflective. Its rough I think for me because it makes me realize how long i have been sick- I don't think oh its september 5th I was sick last sept.5th but I do think oh its christmas I was sick last christmas- Does this make sense? It just seems to draw attention to how long I have been suffering from whatever illness I am suffering from.

I am happy to hear you are feeling better today.

I wish I could say I am feeling better but I had had some new foods on thanksgiving and they seemed to be ok so tonight I had the leftovers- apparently the other night was a fluke becasue I feel like I am dying right now !!

Rachel-

That whole thing you wrote was so on target - its amazing - how people accept a diagnosis given by a doctor and then even though they don't get better just accept it. Obviosly if they are still sick there is something they are not addressing. IF I just said ok I am gluten intolerant and lived that way that would be the same as me saying I am wiling to leave uncomfortable for the rest of my life.

Rachel--24 Collaborator
That has to be a good sign, I take it today is a better day?

It didnt start out that way but has improved greatly. :D

I have found out what was causing such distress and craziness the past week. Alot of my sensitivities trigger the same response, puffiness/swelling in my face, crying spells, swelling of the nasal passage, anger, depression and other lovely things that make me such a joy to be around. :rolleyes:

It was from the heater starting to be used constantly....most likely from dust?? I had the same problem with the air conditioner in the summer....so my mom wasnt running it while I was home.

When I went to BioSET today (I had BioSET lady #2)....I brought it up. She said it was most likey from the dust. My moms gonna change the filter and turn off the vent in "my room". I had the same symptoms in my own house 2 weeks ago when I turned on the heater. :(

At my own house I've had the vent in my room shut off for like 3 years now....I noticed a problem way back then. I also have 2 of those air filter/purifier things in my room that I keep on.

The BioSET lady said that I'm gonna be treated for "inhalents"....but we're not there yet. They said I have about 9 treatments left. I think after that they will see what I'm still having problems with...recheck to see if the treatments "cleared" those things and I'll probably have to redo some. Thats my guess anyway.

I was worried about my chemical treatment last Tues....because I got home and had all that drama with my mom about paying bills. I was worried that my stress getting elevated may have affected the results of my treatment?? I asked the lady today...she said next week she will check to see if I cleared those chemicals or not.

I brought my thyroid meds today to see if I have any reaction to them....even though I've never noticed any. There was no reaction whatsoever. :D If there was a reaction she said they would have "cleared" it because I *need* to take those meds.

I also asked her about "clouds"...she said that alot of patients feel bad after they are treated because they are detoxing but it passes and then they feel better and notice improvements. I told her I'm not noticing it yet. :(

She said it could be in part because I'm not able to take supplements that would help me and because I have SO MANY sensitivities. I'm gonna just have to continue clearing more things because I still have more chemicals, all foods, food additives, molds, inhalents, etc. Heavy metals is gonna be last for me.

For most people heavy metals are addressed in the beginning but for me they had to adjust so that the more toxic things are at the end so that my body will be able to handle the treatment and the detox.

Last week we did everyday chemicals and I reacted to nearly ALL of them. In the first tray there were like 30 or 40 vials and I reacted to all but 3 of them. :blink: I had a really big and very FULL glass on my stomach for that treatment.

Today we did petroleum based chemicals. I didnt react to nearly as many. I reacted to everything having to do with jet fuel :huh: and alot having to do with car exhaust. I already know I react to car exhaust.....but jet fuel and exhaust?? :unsure:

How would I get around jet fuel.....is it just in the air?? :unsure:

Maybe my body just doesnt like it.....even if I dont get around it??

Anyway I had a full glass today but the glass was much smaller. :)

After we go through the chemicals they test the "bad" chemicals against my body systems to see which systems those chemicals are affecting. We do this with every treatment....no matter if its chemicals or foods or whatever the "bad" stuff may be.

Anyways, the systems that were directly affected by my reactions to those petroleum chemicals were my joints, my spleen, food allergies :blink: , and my hormones. If there were more....I dingo'd them. :ph34r:

Hormones seem to almost ALWAYS come up. I think *everything* is affecting my hormones. Could this be why I end up crying or depressed or angry?? Is that a hormone thing? :unsure:

My mom went with me....she was allowed in the treatment room with me....she just wasnt allowed to touch me at all while I was in the room.

I dont have an appt. until next Saturday. :(

At least today I actually scheduled ALL my upcoming appointments. :rolleyes:

I think they have scheduling problems these 2 weeks because BioSET lady #1 is out of town for the holidays.

I like her the best because she's the one who knows everything as far as Lyme and mercury and everything else. Shes very smart about this stuff. BioSET lady #2 doesnt know anything about Lyme or mercury. I cant gain any scientificness from her. :(

Rachel--24 Collaborator
I don't think oh its september 5th I was sick last sept.5th but I do think oh its christmas I was sick last christmas- Does this make sense? It just seems to draw attention to how long I have been suffering from whatever illness I am suffering from.

Mia...me too...thats exactly what I think of. I actually started getting pretty sick around the holidays 2002. So yeah...each year the holidays mark yet ANOTHER year of feeling crappy and each year I am more withdrawn from the festivities.

Also EVERY year....I think it will be my last year of feeling crappy. Hopefully this time its TRUE!!

IF I just said ok I am gluten intolerant and lived that way that would be the same as me saying I am wiling to leave uncomfortable for the rest of my life.

YUP...I never realized how much we think alike. :)

Sadly though....so many people DO accept one diagnosis and if they continue to never have good cognitive skills, or if they continue to develop more intolerances, or if they get more and more crippled with each passing year.....its ALL because of Celiac. Its because they were undiagnosed for too long or because maybe they were cc'd or whatever. I've read of people with Celiac who were undiagnosed for decades but once diagnosed.....they were FINE. If you continue to develop symptoms and more autoimmune diseases AFTER you've been gluten-free for years....how is this caused by Celiac?? :unsure:

Rachel--24 Collaborator

I had to go back :o

There was stuff I missed in the past couple days.

im actually not reacting horribly to *everything* anymore. i have started gaining weight back, although a little bit, it has made a huge difference.

YAY Laura....GREAT news!!! :D:D

6 Lbs. can make a BIG difference...I hope this trend continues. Also HOORAY for the pd. coming back. :)

I heard a great description of Lyme, it goes: It's like having a talking frog that only talks when you are alone in the room with it, you know it is true but try to prove it. :lol:

My frog talks to me constantly....he doesnt wait for me to be alone. Sometimes I wish he would. I think people close to me believe in the "talking frog" now.....mainly because of my out of character behavior and out of nowhere mood changes. :lol:

Once upon a time....I was *not* like this and I also NEVER cried. *Something* has got to be responsible for all this sensitiveness and wussiness....I was the LEAST sensitive person you'd ever meet before this happened.

Hey guys,

not been here for a while and lost the plot slightly but you guys sound as though you need to smile.

Debbie.....THANKS!!

I LOVED those!!! :D

I printed them....in case I need to smile again. :)

miamia Rookie
Mia...me too...thats exactly what I think of. I actually started getting pretty sick around the holidays 2002. So yeah...each year the holidays mark yet ANOTHER year of feeling crappy and each year I am more withdrawn from the festivities.

Also EVERY year....I think it will be my last year of feeling crappy. Hopefully this time its TRUE!!

YUP...I never realized how much we think alike. :)

Sadly though....so many people DO accept one diagnosis and if they continue to never have good cognitive skills, or if they continue to develop more intolerances, or if they get more and more crippled with each passing year.....its ALL because of Celiac. Its because they were undiagnosed for too long or because maybe they were cc'd or whatever. I've read of people with Celiac who were undiagnosed for decades but once diagnosed.....they were FINE. If you continue to develop symptoms and more autoimmune diseases AFTER you've been gluten-free for years....how is this caused by Celiac?? :unsure:

Rachel-

Same for me I got sick around New Years- Its not an anniversary that I like celebrating !

I have been completly baffled by the idea that once you cut out gluten you develop all these further intolerances- and all these further problems - How is this an accepted idea?

especially considering that a large population of celiacs cut out gluten and are fine. Obviously for them gluten was the problem and they took care of it. But for so many others it seems that cutting out gluten does not solve the problem or leads to more problems- does this make sense

georgie Enthusiast

Can anyone tell me if erratic temperature is an indicator for Lyme ? Hubbie has HypoThyroid, Adrenal issues but his temps are not normal. They can swing from 35.4 in the morning to 37.4 a few hours later. If its a hot day - he gets a fever. If its a cold day he gets chilled. I have been reading all his old blood tests and he hasn't even been tested for Lyme. He is in Aust now and not much is known about it here. He was from England.

Hope everyone had a Happy Thanksgiving.

CarlaB Enthusiast

Debbie, thank you for the jokes.

We must all be like Shrek ... onions, layers ...

rinne Apprentice

Laura, I thought the article was good although the emphasis is on ABX for treatment. I appreciated his emphasis on detoxing and was impressed that he gets the importance of that.

Stephen Buhner pointed out that when people talk about herbal protocols for treating Lyme disease as experimental they miss the point that all treatment for Lyme disease is experimental. I just saw a post this evening from a woman who went the ABX route ten years ago and thought she was cured but has recently had a major relapse.

I think Lyme requires a revolution in our lives, a willingness to investigate everything and take responsibility for ourselves in a completely different way. I don't think there is one solution, it is more like finding one's self a novice lion tamer in a cage with a fierce lion, we know we have to take charge but in that moment it feels like the lion owns 90% of the cage. :lol: We must become lion tamers so that we own that 90%.

Rachel, thank you for the excellent scientificness, once again you put the pieces together in a way that is easy to comprehend. I agree with you, I think people do receive a diagnosis and then fit all their symptoms into that diagnosis. Just imagine though the experience of most people with doctors and the finality with which they are told they don't have Lyme even if it is suspected. How many people get their tests and study them?

Rachel--24 Collaborator

Julie thanks for posting the link to that amazing story!!

I'm posting it again for anyone who may have missed it..

Open Original Shared Link

I had read this girls story before....on a different site. She tells her story even better here! I recognized her picture and the mountain climbing stuff. :D

I'm alot like her in that I LOVE the outdoors...camping is my favorite but I'll be happy in any place where there is noone around and plenty of wildlife and nature to explore. The difference is that I never saw ticks on me. Its possible that I've had one on me and flicked it off....just thinking of it as a "bug".

Unless its a spider or a ladybug...I usually just consider it a "bug" and dont try to determine what "type" of bug it is....I just want it OFF of me. When I look at the pictures of ticks....I think they look like beetles....I've seen plenty of bugs that look like the ones in the pictures but I've never seen them stuck on me and needing to burned off or anything like that.

Any bug on me I was able to flick it off. I guess I always thought ticks could NOT be flicked off. They could only be burned off or removed with tweezers. Am I wrong?? :unsure:

If its a hot day - he gets a fever. If its a cold day he gets chilled. I have been reading all his old blood tests and he hasn't even been tested for Lyme.

Yes....this happens to me. I dont get fevers that I'm aware of but some people do. I think some co-infections of Lyme cause fevers. I get hot flahes or sweating at times...it used to be REALLY bad the first year....to the point that my hair and clothes would get soaked. Now that seems to have calmed down...now I mainly get chills. My temps arent totally related to the weather...I can get sweaty when its cold or chilled when its warm out.

Georgie.....read the WildCondor story.....it tells alot about what Lyme can do.

Open Original Shared Link

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    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
    • max it
    • cristiana
      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • 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.
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