Jump to content

  • 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

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I feel like a complete idiot for not thinking of it myself.

I am going to freak out if it was this cheese the whole time making me sick.

I haven't had dairy or cheese, but I would NEVER have thought that my cheese project could have done this.

Is there a quick way to find out whats going on and/or heal? (delusions of grandeur I am sure)

Hmmmm....I dont know if the cheese project could be responsible??

Were you exposed to the cheese mold on a regular basis?? If it was in the fridge I dont know if the exposure would be constant enough to make you sick...but I dont think its impossible either.

Mold can cause some serious harm by bringing down the immune system and also if you are particularly susceptible to mold toxins your body may not deal with them very well.

Even though you tolerated cheese mold in the past things can change depending on how many stressors your immune system is dealing with.

I used to tolerate *everything* without any problems....now I can hardly tolerate *anything*. :huh:

Lots of us here have issues with mold. My Dr. said those who have issues with metals and Lyme tend to have issues with molds as well. Its a whole viscious cycle.....once the immune system is suppressed you can become vulnerable to many things that may not have caused symptoms in the past.

If you think that you had a great deal of exposure from the cheese project I do think it could be a factor....hopefully you can get it figured out. Theres no easy answer because it depends on any other factors that might also be present.

Get rid of the cheese and see if that helps. I wonder if the mold spores could also travel to other foods in your fridge?? :unsure:

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

Celiac.com Sponsor (A8-M):


  • Replies 33.4k
  • Created
  • Last Reply
CarlaB Enthusiast
CarlaB
Posted
Hopefully life will continue to bring happiness my way. :)

And more pink. :)

Kassandra, don't be too envious! The brain fog is still there, it was just lifted enough for a while this morning that I could read music and didn't have to rely on already knowing the melody ... as far as serious reading/studying, I still couldn't do that either.

However, one of my new meds is minocycline which crosses into the brain. Between it and the bartonella treatment, we're hoping it helps with this brain fog.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel,

When you went off corn, did you notice a big difference? Are you still off of it? I have thought about going off, but I don't know if I should. I think it would just be yet "another" intolerance which is probable a product of Lyme?

Kassandra

I wouldnt say that I noticed dramatic improvement going off of corn.....at that time I was still eating alot of other things which were not helping. What I *did* notice dramatic improvement from was stopping all supplements. I did that when I was trying corn-free because corn is in so many supplements and meds.

Once I stopped the supplements I gained 10 lbs right away. My weight has been pretty stable ever since. That was back when I first started this thread.

The improvement from stopping the supplements was totally unrelated to corn.

I still avoid corn because its a moldy grain and I do have problems with it....I have problems with all grains. :(

For me its just another intolerance caused by the other issues and leaky gut. I dont worry about tiny amounts of corn now but I definately dont eat it outright.

AndreaB Contributor
AndreaB
Posted
Thanks for the flight info.!! :)

I think you will be 100% behind my other decision as well. :D

No more toxic people bringing me down!! :angry:

No problem with the flight info. I would have never known there were so many airports to choose from had you not told me. :)

Yes, of course, I'm 100% behind your other decision. :D

You've seen improvement this last year in your health and well being all around.....that's something to be happy about too. :)

Green12 Enthusiast
Green12
Posted

Rachel, I am so sorry you reacted to the IV, I was so hoping that would not be the case.

I am anxious to hear what comes of your conversation with your Dr. if the formula can be tweaked, yet still effective, for you.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel, I am so sorry you reacted to the IV, I was so hoping that would not be the case.

I am anxious to hear what comes of your conversation with your Dr. if the formula can be tweaked, yet still effective, for you.

Yeah...its a real bummer only because I had been feeling soooo good. It wasnt really any different from any other reaction I've had to foods or anything else but its just so much more noticeable when you're feeling good. :rolleyes:

Before the IV I think my head had the least amount of swelling I've had in maybe over a year. :o

I think thats alot to do with why I was feeling so good...there was alot less pressure in my head.

I'm doing the low oxalate thing....yet I'm eating alot of chocolate and it seems like the chocolate reduced swelling. :huh:

Chocolate is suppossed to be high oxalate. <_<

The only 2 reasons I can think of is that the caffiene from the chocolate (I can feel it) is increasing my heartbeat and my circulation....or the magnesium is somehow helping??

I take magnesium supplements but its in "malate" form.... but its the "citrate" form of magnesium that can help with reducing oxalates.

I still think alot of my reactions to veggies, herbs, supplements, fruits, etc are related to salicylates. Most of the foods high in salicylates are also high oxalate so its difficult to determine which is the problem. Chocolate is NOT high in salicylates though.

Its mostly the plant stuff that I have the biggest problems with.

I started taking calcium citrate today. It reduces oxalates and I'm determined to figure out if this is a problem or not.

Reason being....I think if I can reduce oxalates....I'll also be reducing yeast....which will also take some of the burden off of my liver. Oxalates and yeast bind with metals so reducing these would probably make it easier for my body to release the metals. Thats what I'm thinking. If I can get some of these other things which are holding onto metals reduced to lower levels my chelation might be much more effective.

Green12 Enthusiast
Green12
Posted
Before the IV I think my head had the least amount of swelling I've had in maybe over a year. :o

I think thats alot to do with why I was feeling so good...there was alot less pressure in my head.

The only 2 reasons I can think of is that the caffiene from the chocolate (I can feel it) is increasing my heartbeat and my circulation....or the magnesium is somehow helping??

Does the fact that cocoa in chocolate is a vasodialator enter the equation in any way? I'm wondering if the pressure is somehow relieved by the blood vessels dialating :huh:

Reason being....I think if I can reduce oxalates....I'll also be reducing yeast....which will also take some of the burden off of my liver. Oxalates and yeast bind with metals so reducing these would probably make it easier for my body to release the metals. Thats what I'm thinking. If I can get some of these other things which are holding onto metals reduced to lower levels my chelation might be much more effective.

You'll get there, I just know it, you have so many pieces of the puzzle accounted for and in place, it's just a matter of time :D

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

Celiac.com Sponsor (A8-M):


miamia Rookie
miamia
Posted
I tried a handful of organic, gluten free cornflakes (just corn flour and salt).

BIGGEST MISTAKE EVER.

A few hours later I was sweating, dizzy, angry, exhausted and my brain was no where to be found.

(I was hoping to be able to have a grain to base meals around, but apparently I was over zealous)

I also had to take out dried dates (mouth reaction and regurgitation)

peanut butter (acid burning & regurgitation)

pickles (heartburn)

I did make a soup with collard greens, carrots, onions, chicken stock (homemade), yams that stayed down very well.

I also stewed prunes with some cardamom, and as long as I don't eat more than 7 of those, they work - in more ways than 1.

Roasted chicken also is doing ok as long as I don't eat it alone and not too much.

The biggest breakthrough - hot cocoa mix (milk free) into baby formula. It makes the baby-vomit-burnt-tires taste less noticeable and I can at least get down half a glass.

(None of the three hydrolyzed protein powdered I tried worked. I bloated and regurgitated them all.)

I overwhelming want to eat an entire bag of candy corn RIGHT NOW. Thank goodness there aren't any in the house.

can I ask you what baby formula your nutritionist recommended

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Does the fact that cocoa in chocolate is a vasodialator enter the equation in any way? I'm wondering if the pressure is somehow relieved by the blood vessels dialating :huh:

I dunno?? :unsure:

Its the wierdest thing but I've tested it 3 times now and it definately is reducing the swelling in my head. :huh:

It is also making me hyper, making me aware of my heartbeat and waking me up at night (during the detox hours). Its causing my body temp to go up...increased body temp reduces allergies significantly.

My Dr. always stresses that about the body temp.

Also, enzymes are *highly* sensitive to temp. changes. Mercury can inactivate any enyme in the body...mercury can also reduce body temp. significantly. I read that bringing up the body temp. (even by one degree) can restore enzyme function.

Its interesting because when I was able to eat normal food for those two days at work I had been eating the chocolate...not feeling cold and puffy...an I tolerated foods I wouldnt normally tolerate. :huh:

I dont think the chocolate is *good* for me....but it is definately serving some purpose which is beneficial to me....I'm sure its also having negative effects as well.

I did eat choc. ice cream for several months without having these results....but I was consuming dairy at the same time and I was not focusing on the low oxalate thing. I ate popcorn and potatoes daily and all of these foods worsened my fungal issues. Thats when I tested through the roof with my yeast antibodies.

After eliminating those foods my yeast antibodies came down more than 50%. My results were still well above the normal range...still severe but definately a huge improvement from where it was.

I'm feeling less yeasty avoiding the high oxalate foods and starches....even though I'm consuming the sugar from the chocolate.

You'll get there, I just know it, you have so many pieces of the puzzle accounted for and in place, it's just a matter of time :D

Thanks for always being so supportive Julie! :)

The encouragement I get from you guys really does help to keep me motivated. :)

michelleL Apprentice
michelleL
Posted

I used to react to corn - I don't anymore, not to say that it might come back... - 7, 9, 13, knock on wood. I was also allergic to soy, seemd to have recovered from it and could tolerate it for a while, and now I am sooooooo extremely allergic to soy, it is not a laughing matter.

melmak5 Contributor
melmak5
Posted

Rachel - I had a small, special, cheese-fridge for the project. The fridge in the kitchen is for eating, the one in my bedroom was just for my crazy science experiments.

I really doubt it is the cause of all this (I have asthma and I think I would have had a strong lung-based reaction) but I am sure its not good to have another irritant where I sleep. So, to the basement with you cheese!

Miamia - I sent you a pm, but I tried Similac, purple label, hypoallergenic for babies with protein sensitivity.

The allergist did not recommend one formula over another, he said that its best to find what your body responds to, so don't buy in bulk, buy the smallest quantity possible and try it. A little at first, see how your body does, and then the next day try a little more.

I realized why I have not been able to tolerate ANY protein supplements from health/vitamin stores... none are 100% hydrolyzed. (A Vitamin Shoppe manager was very kind and helpful with explaining all of the details, and labels)

Next trial is Earth's Best Organic baby formula (powder).

It doesn't taste like puke & burnt tires, so I am hoping I can switch to this one.

dlp252 Apprentice
dlp252
Posted

Good morning all...just a quick drive by post...

I was really busy on Friday at work, and well, have just been feeling overwhelmed by just about everything lately, AND I'm now in panic mode because I've done absolutely NOTHING for my trip on Saturday, so I'll probably be an absentee rachellvillian until after my cruise. I think I need the break from the computer time too.

This year I won't be able to check-in from the ship because my friend no longer has unlimited minutes...sheesh, I've been working hard to get to platinum status (only 1 more cruise after this to go) and now they've changed the "perks" so it no longer includes computer time onboard, lol.

Feel free to email me if you'd like, but I probably won't be around much for a couple of weeks.

jerseyangel Proficient
jerseyangel
Posted
Good morning all...just a quick drive by post...

I was really busy on Friday at work, and well, have just been feeling overwhelmed by just about everything lately, AND I'm now in panic mode because I've done absolutely NOTHING for my trip on Saturday, so I'll probably be an absentee rachellvillian until after my cruise. I think I need the break from the computer time too.

This year I won't be able to check-in from the ship because my friend no longer has unlimited minutes...sheesh, I've been working hard to get to platinum status (only 1 more cruise after this to go) and now they've changed the "perks" so it no longer includes computer time onboard, lol.

Feel free to email me if you'd like, but I probably won't be around much for a couple of weeks.

Have a wonderful, safe, relaxing time, Donna :D I can relate to feeling overwhelmed--we move on Saturday and the details are driving me nuts....

Anyway, I'll catch up with you soon, but I just wanted to tell you bon-voyage and give you a cyber hug! See you soon :)

covsooze Enthusiast
covsooze
Posted

A quick drive by here as I'm looking after a poorly DS :(

Donna, have a great cruise B)

Patti, thinking of you unpacking :)

Rachel take a look at www.chocolate.org It's great and lists all the truly good things about chocolate (ie scientifically good things ;) )

Susie x

AndreaB Contributor
AndreaB
Posted
This year I won't be able to check-in from the ship because my friend no longer has unlimited minutes...sheesh, I've been working hard to get to platinum status (only 1 more cruise after this to go) and now they've changed the "perks" so it no longer includes computer time onboard, lol.

Have a fun time. I'll miss not hearing from you this year. That stinks that they changed the perks. :(

Have a wonderful, safe, relaxing time, Donna :D I can relate to feeling overwhelmed--we move on Saturday and the details are driving me nuts....

Anyway, I'll catch up with you soon, but I just wanted to tell you bon-voyage and give you a cyber hug! See you soon :)

That came up quick. Hoping for a smooth move, with no more injuries. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel - I had a small, special, cheese-fridge for the project. The fridge in the kitchen is for eating, the one in my bedroom was just for my crazy science experiments.

I really doubt it is the cause of all this (I have asthma and I think I would have had a strong lung-based reaction) but I am sure its not good to have another irritant where I sleep. So, to the basement with you cheese!

Yeah..it doesnt sound like cheese project could have caused it all...and I agree that you'd probably experience some wheezing or coughing...something with the lungs.

Glad you moved it out of your room though.

Donna...bummer that we wont be hearing from you but I'll be thinking about you...and hoping you're having lots of fun. :)

Patti...sheeeesh...the moving date is almost here already! :o

It seems like it came pretty fast.

Good luck with the move. :)

Rachel take a look at www.chocolate.org It's great and lists all the truly good things about chocolate (ie scientifically good things ;) )

Susie,

YAY...scientificness about CHOCOLATE!!! :D:D

Yup...I'm eating some right now. :P

I'll have to check out this page later on...thanks for sharing. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

I got the dates for Amy's next visit....its not until the middle of December so hopefully I'll get up to Washington before that.

How exciting if I actually go and get to meet Andrea and the children. :D

jerseyangel Proficient
jerseyangel
Posted
How exciting if I actually go and get to meet Andrea and the children. :D

Still jealous.... :D

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Still jealous.... :D

Awww...too bad we werent all closer. Sheeeesh....why does New Jersey have to be so far?? :rolleyes:

jerseyangel Proficient
jerseyangel
Posted
Awww...too bad we werent all closer. Sheeeesh....why does New Jersey have to be so far?? :rolleyes:

I know :( --maybe someday :)

AndreaB Contributor
AndreaB
Posted
I got the dates for Amy's next visit....its not until the middle of December so hopefully I'll get up to Washington before that.

How exciting if I actually go and get to meet Andrea and the children. :D

I can't wait!

Still jealous.... :D

I wish I could meet you too. :(

covsooze Enthusiast
covsooze
Posted
Awww...too bad we werent all closer. Sheeeesh....why does New Jersey have to be so far?? :rolleyes:

At least you guys are all on the same continent! ;) I guess that makes me the UK ambassador to Rachelville :lol:

NoGluGirl Contributor
NoGluGirl
Posted

Dear Rachel,

That is so weird about the chocolate helping the head swelling. :blink: The circulation is increased by caffeine, so maybe that is it? Other than that, I am out of ideas. Perhaps you have an oxalate threshold, where you can tolerate one type of high oxalate food per day? In my opinion, anything that gives me a good reason for eating chocolate is worthwhile! :lol:

Magnesium certainly seems to help me as well, since I often get terrible migraines when trying to stop eating chocolate. I think the caffeine boosts how I feel. I thought I was overdoing the caffeine, because of my heart pounding and me sweating so much. However, not having any this morning did not have any effect on that. My guess is that it is the shortage of B12. I took the bonemeal powder yesterday, and felt better. I have not taken any today, and am feeling worse again.

I have had the craps today, because I ate too many nuts. Planters are so good! Due to the high fat content, I really need to control myself from now on. If it had been the B12 and calcium, the effects would have been long before now. I took it at noon yesterday.

I know low oxalate diets are better for yeast. My theory is because the oxalates act as natural chelators. Chelation stirs up metals, which worsens the Candida. This all goes back to the information you gave us from Klinghardt. It makes a lot of sense!

I would not be surprised if the cheese is causing Kristina to react. I do not know if the mold spores could travel to the food around the cheese or not. That probably depends on various factors. One would be whether or not the cheese is covered. Just breathing in mold can make me sick. Removing it from her room is a good idea. Reducing her exposure should reveal if it is the culprit or a contributor to her misery.

You are wise to remove toxic people from your life! They are energy vampires, feeding off of us. It makes us physically weak, not just emotionally upset. I wish I could get away from the emotional vampires in my family. These are definitely toxic people!

I bet they can take out the Vitamin C from the IVs. If they removed the B Vitamins, I am sure they can remove the other one. These treatments often have to be highly personalized. Each body is different. Let us know what the doctor says! Meanwhile, I was wondering about the kind of reaction you got from the B Vitamins. How do you know if you are reacting badly?

You will love www.chocolate.org! It is a great site! All kinds of neat information is on there! Susie told me about it the other day! I have it in my favorites now!

That is great you should get to see Andrea soon! I wish I could come. Maybe one day we all will get to meet! Bev said if she won the lottery we would have a huge party! We are going to hold her to it, too!

Dear Julie,

I hope the doctor can tweak the IVs for Rachel, too! I think they probably could. The B Vitamins were removed. I do not see why they could not adjust the Vitamin C accordingly. Let's just keep sending good energy her way!

Dear Kristina,

Do not feel dumb! You cannot think of everything! We all have things that we cannot believe did not don on us. That is just how things are! :) Sometimes, you need to get together with other people to discuss your issues and everyone can brainstorm. Rachelville does that, and we have been able to help each other a lot!

It cannot hurt to avoid exposure to the cheese and see how you do. Mold spores can travel, but if the cheese is covered, it probably is not bothering any of your food. Being near it can still make you ill if you are sensitive enough. People with a yeast overgrowth typically are. Certain types of mold may bother you more than others as well.

I become queasy smelling mold a lot of the time. Other times, I begin sneezing or feel pressure in my head. This varies depending on whether the mold is from the refrigerator or the shower. They probably are different kinds of fungus. The trouble is, I react to all of it! :(

Dear Carla,

I am glad the Mino and Bart treatments are helping. Brain fog sucks! I know I have it off and on. Sometimes it is to the point I think I am getting Alzheimer's at 24! :unsure: I did better after taking B12 yesterday. I know vitamin deficiencies often play a role in our mental function. I have not gotten to take it yet today.

Dear michelleL,

I am happy to hear you got better after removing corn from your diet. :) I do alright with corn, but know eating a lot of it all the time is bad for Candida. Since I have that, it complicates matters a lot. Creamed corn is the only form of it I cannot tolerate. It gives me terrible stomach cramps and D.

I hope I am not sensitive to soy. I do fine on soymilk that has nothing but filtered water in it aside from the actual soy. However, carageenan seems to irritate my system. My stomach is very tempermental. I hope to God I am not developing additional intolerances.

Dear Andrea,

I have a feeling the IVs can be fixed. Rachel's doctor seems to know how to make things right for every single patient. I wish my doctor would get moving! I am trying to get the ball rolling on the Lyme testing. Regardless of the information I can give her, I will probably be better off posting my results here for everyone to see and interpret.

Dear Mia,

How are you? I hope better. I know chelation wipes you out. Are the colonics helping still? What about your worm protocol? Have you started that yet?

Dear Patti,

I want to be there to meet Andrea, too! Indiana is sort of halfway between everything. That is one bright side to being here. It still is pretty far away, though. We are in the middle of podunk, and no one wants to come here!

I hope the move goes smoothly! We all are crossing our fingers for you! It is overwhelming. There is so much to take care of. If I end up moving to New York, that will be crazy! That is assuming Marvel likes my work after I get it sent.

Dear Donna,

We have been wondering where you have been! The cruise is very soon! Only 6 more days until you go sailing away!

What a bummer they decided to cut the perks of minutes! So much for a luxury vacation! :rolleyes:

Dear Susie,

What is wrong with your son? Is he okay? Did he get another nasty cold? When I was in Kindergarten, I caught everything! Hopefully, your little boy will feel better soon!

Were you able to get a hold of anyone at Foresight? I know you had a situation with the detoxing over the weekend. I hope you got that straightened out. Those situations can be so perplexing. Until I figure something out, it drives me crazy!

You made a good point! What are we whining about? You are all the way across the ocean! That is a great idea! You can be our very own Ambassador!

Sincerely,

Jin

confusedks Enthusiast
confusedks
Posted

Hello,

I have a favor to ask all of you. I need to prepare some info on Celiac for my 504 meeting tomorrow. Does anyone have any good sited info that I can give to the panel of people? I also am looking for something that talks about glutening in general, so they know that when I am glutened I need to stay home, but some sort of scientificness that backs it up. Thank you for any help!!

Kassandra

jerseyangel Proficient
jerseyangel
Posted
Dear Patti,

I want to be there to meet Andrea, too! Indiana is sort of halfway between everything. That is one bright side to being here. It still is pretty far away, though. We are in the middle of podunk, and no one wants to come here!

I hope the move goes smoothly! We all are crossing our fingers for you! It is overwhelming. There is so much to take care of. If I end up moving to New York, that will be crazy! That is assuming Marvel likes my work after I get it sent.

Yea--I would love to be able to have a weekend where we could all somehow meet face to face. If I ever win the lottery, it's gonna happen :D

Thanks for your good wishes--we're about ready to go. Lots of annoying details, but I'm sure it will all go as planned.

Good luck with Marvel--they'd be crazy not to be impressed by your work. I'll keep my fingers crossed for you :)

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. suek54
      - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      5

      Awaiting dermatitis herpetiformis confirmation following biopsy

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me...
    2. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt. I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for...
    5. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,257
    • Most Online (within 30 mins)
      7,748
    KariNoMoreGluten
    Newest Member
    KariNoMoreGluten
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.