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Omg...i Might Be On To Something

Rachel--24

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CarlaB Enthusiast
CarlaB
Posted

Very interesting, Rachel. I have a lot of that. I have a Rolex I bought with money I saved babysitting and some that I got for high school graduation. I bought it in 1982 and have been wearing it ever since (it ended up being a good investment :lol: ). I stopped wearing it a couple months ago because it bugs me. Morgan was flabbergasted when I told her. She couldn't believe I had worn it that long and don't wear it anymore. Jewelry seems like it's choking me sometimes. Sometimes the kids grab me to hug me and it hurts.

Sounds REALLY bug me. So do lights. I wear sunglasses even when it's cloudy, but not all the time, some days it's worse than others. I can't sleep if any light is on ... if the cordless phone's light, or the computer charger, etc. I've learned to tolerate the air cleaner's light because the sound helps. I get completely blinded when cars have their bright lights on ... even if it's daytime.

It's good knowing this stuff is "normal."

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AndreaB Contributor
AndreaB
Posted
Ok So I had my docotr appt. and my lyme c6 peptide test came back positive- my doc says he had stopped giving this test because it almost always seemed to come back negative he was really suprised. So as of now the plan is that I have started (as of tonight )this meiciene for my motility issues. Starting next tuesday I am going to go into him 2 times a week for antibiotic shots- because he dosen't think I will be able to handle antibiotics orally- and than I will after two sessions do this urine test for lyme.

Ok there is more to write but that is a quick recap

Miamia

Miamia,

Rachel's already answered you and she's knows far more than I do. I haven't done one ounce of research. Sounds pretty positive combined with your Igenix test though.

I haven't had a cold or virus (that I know of) for 2 years now. Of course, now that I've put that in writing, I'll get sick tomorrow!!

:lol::lol:

I hope not. :)

Carla,

I hope you start turning the corner to feeling better soon. Is any of this part of detoxing/herxing or just normal part of lyme?

miamia Rookie
miamia
Posted
Miamia...yeah...the main problem with this test is that its not sensitive enough. Its only about 50% sensitive so that means there are ALOT of false negatives.

You have a positive! I will have to do some research to see how "specific" this test is for Lyme but I'm thinking that since you are positive, this combined with your Igenix Western Blot results plus your symptoms pretty much means Lyme Disease.

The urine tests also has alot of false negatives so even if you get a negative on that it wouldnt mean much since you already seem to have a pretty clear picture. I'm gonna look further into the c6 peptide test but I think at this point you dont need more testing. Is your Dr. not ready to diagnose you yet?

Rachel-

Thanks for the volonteering your research talents!! My doctor and I both feel if I have lyme I have had it for along time and thats probably making it that much harder to diagnose. I think he feels like there are many docs who would say I definitly had it and both he and I are in the same boat of thinking its highly probable but not 100% sure becasue is it that or some other bacterial infection? So we are going to start treating it with the antibiotics. I have so many other factors coming into play right now- the bad candida, the poor motility, etc- obviosly all of these things could have started with lyme.

One of the other major things is he knows I don't have alot of money and he thinks the only antibiotics I will baable totake are these injections and they are really expensive the only way they are covered at all is if you have a diagnosis- medically- as in by a test- f-ing insurance companies!! So he really wants me to be covered so he is trying to get me to test positive on a test that they will recognize.

honestly I was so overwhelmed at my last appt. It was the day after xmas and there was so much info I felt just overwhelmed. I am still waiting for one more set of results from igenix that should be in either late this week or early next week and than I go into him on tuesday for the first injection and I will get to talk to him more then.

Miamia

miamia Rookie
miamia
Posted
Funny about the egg sandwhiches!! :lol:

For some reason New Years doesnt get to me too much even though January was also the month that I got really sick. I was developing symptoms for a few months prior to that but got hit hard in January. I just go to bed early on New Years and by the time I wake up its all over with and I'm like...."Who cares?" :P

Xmas is really hard though. :(

I'm thinking to do this this year just rent when harry met sally (my favorite new years movie) and go to bed at like 10 -

miamia Rookie
miamia
Posted
Actually my babesia showed up in BioSET...and I also had other alternative medicine type testing done where babesia showed up.

You asked if I thought the BioSET was "right on the money"...and i've had some experiences where it really has been. It's always done wonders for my allergy with dairy, but as for the actual testing and what it finds...I feel that it's very accurate for it's readings on my Candida...and it also found H Pylori, which was found in my blood tests. One time it also showed up that there was a problem with my tonsils, and it was completely accurate because I had a sore throat that day.

Thanks for all the information on Babesia! So you think you all have it too? My biggest symptom out of all the symptoms that I have in general is severe constipation (I know, T.M.I. right? haha. but im so used to talking about it by now.) does anyone suffer from that? If I don't take high doses of magnesium-oxide, I don't go for about 2 weeks, maybe even three if it's really bad. What your guys' worst symptoms? You guys say that you think you might have Babesia too...what kind of symptoms make you think that? I get the headaches, the night sweats, the fatigue...then randomly I'll get spurts of diarreah.

This would be lovely dinner conversation, wouldn't it?

I have had alot of problems with constipation. Luckily alot of it has cleared up but it is still an issue for me. Its crazy though now if I don't go for one day I really feel it- like get so uncomfortable I can't sit still and my stomach gets so bloated.

My worst symptoms- pain when eating, weight loss, extreme bloating, loss of appetite, trouble breathing (the inability to take a complete breath), sensitivity to noise,light and smells, major food -major, major food sensitivities, bad brain fog- bad brain fog!- oh god this list is starting to depress me I have to stop

Miamia

dlp252 Apprentice
dlp252
Posted
Oh my goodness, this board is HUGE. haha...well I was ever so kindly invited by Carla to join because she informed me that lyme disease is a popular topic on this board. But anywayyyys...it looks like everyone is talking about the holidays right now...I hope everyone is having a good time, it sure sounds like you are. :)

Hello and welcome!!!

dlp252 Apprentice
dlp252
Posted
Donna.....that was one HECK of a good pie! I dont know if its just cause I havent had any in so long.....but MAN....I think that little gluten-free $10 pie was the BEST I've ever had!! :D

Of course it would have been even better with cool whip. I wonder if I can just bring a tub of cool whip to Bioset and have the Voo-Doo lady "de-sensitize" me. :lol::lol:

I think I might have to write to Whole Foods to MAKE SURE that they always have that pie available during the holidays....or even all year would be great! B)

I cant believe I didnt get any bad reactions though....maybe the Bioset is helping?? As far as stuff in foods....I've only been treated for molds and phenolics so far. The phenolics panel was pretty big though....alot of the chemical type stuff in foods. Who knows...maybe it helped some. :huh:

I'm looking forward to getting into foods next week! WOO-HOO!

I miss eggs. My mom was making egg sandwiches this morning. Holy Cow....I miss those!! I LOVE eggs like that...english muffins are the best. Do they make any gluten-free english muffins yet??? :unsure:

Emotionally....I didnt do too well through the holiday. :(

Lots of tears and lonliness and just missing life the way it used to be. I didnt go to work yesterday or today because the sadness brought me down and I didnt feel good. :(

I had those balls of stress in my stomach again but its better now...I'm going to work tomorrow.

Its crazy cause I do all this stuff to keep myself feeling good. Avoid all these foods, dont drink alcohol, avoid chemicals....then I keep someone in my life who is more toxic to me than all that stuff put together. :blink:

I decided not to do that to myself anymore...No more toxic people in my life. This is the same person who got me in this mess to begin with....causing me so much stress. Its my New Years resolution to just focus on me....and getting better. :)

...

Donna, are you feeling better??

That pie WAS good...I looked for one last year and they didn't have one, so I was really excited when I saw it. Heck $10 is nothing when we're talking pumpkin pie, lol, it was worth every CENT! :D

I'll bet the BioSET IS working! I find it amazing that you didn't react! That's pretty exciting!

I always tend to reflect more at the holidays...you're right, toxic people have to go. I felt like work was VERY toxic for a couple of years, but it's calming down now for me.

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dlp252 Apprentice
dlp252
Posted
Rachel- I noticed you said that you've started Bioset treatments! I'm so excited for you because I've been doing it for a couple months now and it helps SO MUCH! I can eat dairy right after my treatments (which I usually can't eat), and a couple of other things that im usually sensitive too, but unfortunately it doesnt clear up my gluten problem, and unfortunately people with lyme disease get re-sensitized quickly.

That's exciting, lol!!! I'm going to start BioSET in about a week and a half! I go next Saturday for my initial appointment!

dlp252 Apprentice
dlp252
Posted
Do you guys feel like you're immune system is over active too....and you dont catch colds?? Obviously my immune sytem has freaked out on me and is fighting everything in sight (or out of sight) so this is a good sign?? :huh:

I've had two doctors tell me mine is overactive! And, I DO feel sick most of the time, but usually don't get colds. Whatever I've got now is what I usually get...not a cold, but something like it.

dlp252 Apprentice
dlp252
Posted
For some reason New Years doesnt get to me too much even though January was also the month that I got really sick. I was developing symptoms for a few months prior to that but got hit hard in January. I just go to bed early on New Years and by the time I wake up its all over with and I'm like...."Who cares?" :P

Ditto! If I'm feeling particularly festive, I stay up until 9:00 New Years Eve, but otherwise, it's bed at 8:00! :lol: :lol: :ph34r:

dlp252 Apprentice
dlp252
Posted
Very interesting, Rachel. I have a lot of that. I have a Rolex I bought with money I saved babysitting and some that I got for high school graduation. I bought it in 1982 and have been wearing it ever since (it ended up being a good investment :lol: ). I stopped wearing it a couple months ago because it bugs me. Morgan was flabbergasted when I told her. She couldn't believe I had worn it that long and don't wear it anymore. Jewelry seems like it's choking me sometimes. Sometimes the kids grab me to hug me and it hurts.

Sounds REALLY bug me. So do lights. I wear sunglasses even when it's cloudy, but not all the time, some days it's worse than others. I can't sleep if any light is on ... if the cordless phone's light, or the computer charger, etc. I've learned to tolerate the air cleaner's light because the sound helps. I get completely blinded when cars have their bright lights on ... even if it's daytime.

Ditto! I don't wear jewelry much for the same reason and I also wear sunglasses when it's overcast! Cars with bright lights really hurt!

Anonymousgurl Contributor
Anonymousgurl
Posted
I have had alot of problems with constipation. Luckily alot of it has cleared up but it is still an issue for me. Its crazy though now if I don't go for one day I really feel it- like get so uncomfortable I can't sit still and my stomach gets so bloated.

Miamia and Rachel- Isn't the constipation HORRIBLE?? you described it perfectly Miamia...my stomach actually VISUALLY extends when I dont go. I think it's because I have trouble keeping on weight so I have to eat 2500 calories a day, and that's a ton of food because everything I eat is low calorie because I have such bad food sensitivities. SO when I dont go to the bathroom and get all that food out, my stomach extends and it's just so uncomfortable! Ironically I'm having this issue right now. It's weird...my constipation got worse after going gluten free! No diarreah now...JUST constipation. I'm gettin sick of it. Anyone have any constipation advice? haha...

I was also wondering if anyone thought that bloating might go along with Babesia or co-infections? because I wake up with a very tiny stomach since im underweight...and then by the end of the day it starts looking pretty round!

Dlp- Thanks for the welcome :) And good luck on your BioSET, I'm excited for you! keep us updated! Do you have pretty bad food sensitivities?

dlp252 Apprentice
dlp252
Posted
Dlp- Thanks for the welcome :) And good luck on your BioSET, I'm excited for you! keep us updated! Do you have pretty bad food sensitivities?

My reactions to foods aren't as severe as most on this thread, but I suspect food plays some part in why I don't feel well most of the time. I have diarrhea most of the time, so can't offer any help on the constipation issue. I do have times where I won't go for a couple of days...when that happens I do something really odd, lol. I have an exercise ball...you know, one of those really big balls that people sit on to do sit ups, etc. When I have constipation, I drape myself (as in very relaxed) over it face down and kind of massage the tummy area. It also helps to relieve the "tightness" in the lower back area. Weird, but it seems to help me anyway.

miamia Rookie
miamia
Posted
Miamia and Rachel- Isn't the constipation HORRIBLE?? you described it perfectly Miamia...my stomach actually VISUALLY extends when I dont go. I think it's because I have trouble keeping on weight so I have to eat 2500 calories a day, and that's a ton of food because everything I eat is low calorie because I have such bad food sensitivities. SO when I dont go to the bathroom and get all that food out, my stomach extends and it's just so uncomfortable! Ironically I'm having this issue right now. It's weird...my constipation got worse after going gluten free! No diarreah now...JUST constipation. I'm gettin sick of it. Anyone have any constipation advice? haha...

I was also wondering if anyone thought that bloating might go along with Babesia or co-infections? because I wake up with a very tiny stomach since im underweight...and then by the end of the day it starts looking pretty round!

Dlp- Thanks for the welcome :) And good luck on your BioSET, I'm excited for you! keep us updated! Do you have pretty bad food sensitivities?

I am exactly like this - so thin and have to eat as much as I can so if I don't go its really painful- because I am always eating more than I am hungry for. I have afew things that help I will list them all later. Magnesium gives me a bit of diaheria and makes me feel like crap so I don't take it. But you totally described me about the food sensitivities and having to eat more and not being able to getting it out and that it has gotten worse since being gluten free.

Miamia

AndreaB Contributor
AndreaB
Posted
I always tend to reflect more at the holidays...you're right, toxic people have to go. I felt like work was VERY toxic for a couple of years, but it's calming down now for me.

I'm glad work has settled down Donna. Have you got that brief done or does it get finished today? Missed seeing you pop in here the last couple days. :)

That's exciting, lol!!! I'm going to start BioSET in about a week and a half! I go next Saturday for my initial appointment!

I can't wait!!! Am looking forward to more updates from bioset for you. How are the meds going? Seems like you've gotten used to them.

Miamia,

Hang in there. You are starting to get the answers you need. I hear you about money, we can only do what we are able. Hopefully a short antibiotic challenge will get these guys moving again. Didn't Rachel or Rhonda say you had to wait 2 weeks (or was it longer) before retesting after an antibiotic challenge?

AndreaB Contributor
AndreaB
Posted

Grr. Came back with an error and I resent and it posted twice......obviously edited. :)

dlp252 Apprentice
dlp252
Posted
I'm glad work has settled down Donna. Have you got that brief done or does it get finished today? Missed seeing you pop in here the last couple days. :)

I can't wait!!! Am looking forward to more updates from bioset for you. How are the meds going? Seems like you've gotten used to them.

I got a break on Tuesday and they had our other local office work on it since I was so sick. I saw it yesterday, but it really wasn't bad. They have to file it with the court today, so I'm not sure if I'll see it or not. Darned thing is 150 pages, lol. I'll probably see it at least once today for last minute revisions.

The meds seem okay. The only thing I'm having a problem with now is the Pepto Bismol. That stuff is wretched, lol. My throat doesn't want to swallow the pills! I really have to concentrate when I try to swallow them, lol. And, I'm waking up in the middle of the night with the most awful taste in my mouth and throat. But, I'm not feeling as queasy or light-headed as when I first started all the meds. Some of that may be just that I'm not as sick as I was then.

CarlaB Enthusiast
CarlaB
Posted
Carla,

I hope you start turning the corner to feeling better soon. Is any of this part of detoxing/herxing or just normal part of lyme?

I really don't know. I'm doing so many things that could be causing herxing, or it could just be the Lyme.

DingoGirl Enthusiast
DingoGirl
Posted

Whew! Just KIND OF caught up! I am so behind. Working has been interfering with my fun and play time in life - harumph! :angry::P But I missed you guys.....wow Rachel, you've been eating pumpkin pie, and ONE potato chip? how are you feelign now?

Miamia - I hope you're feeling better......this season can be hard on everyone...I sailed through beautifullly this year but have had SO many tough Christmas years....I do hope you're feeling better soon.

Carla - - did you get a laptop? is that new? yeah, just stay in bed, and come out for food occasionally!

Andrea - good deal on the tree (Rachel's mom's was even better, holy cow!).

Donna - nice to see you! Glad work has calmed down.

Hello to everybody else. Welcome peacenlove! sounds like you've found the right place. :)

I am just so wishing for great health and well-being to all of you/us in 2007. (I know, premature but who knows when I"ll catch up again). :huh: My resolution is to finish painting my house, and get all closets/cupboards/drawers really organized - and stay that way. :ph34r: Kinda hard for me, I clean up my creative bombs/messes quickly sometimes and just throw things in drawers and boxes. Must fully organize now that I have energy.

Well, must get ready for work. Had several wonderful gluten-free meals at friends'/family's over the holiday, it was wonderful, they just simplified and followed my instructions and it worked so well. Brought me much joy. Tonight, Christmas dinner at my mom's with my slacker family. Oh, for Christmas day, my brother's family - - - holy Lord, some of them were in pj's, all had colds, hanging out in separate rooms (for the first part), doing their own things and hardly conversing (until I livened things up) - YAWN. <_< they were exhausted and spent - - bizarre but not totally out of character. Next year, I will go to the REALLY FUN places with lively banter and exuberance and Christmas spirit. :D

Wub you guys.......see ya!

CarlaB Enthusiast
CarlaB
Posted

Susan, I got my laptop a year ago when we knew we were moving out of our house and I would be living in a small place with Morgan till she graduated. We got a laptop for me so that the kids could have a computer in Ohio with Adam and I could have a portable one so I could leave the apt. and sit at Starbucks with it. I could also take it back and forth between Ohio and Indiana.

I love it! I love being able to take it with me. Morgan had her wisdom teeth pulled this morning, so I brought my computer along and balanced the past three months of checks!

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Didn't Rachel or Rhonda say you had to wait 2 weeks (or was it longer) before retesting after an antibiotic challenge?

Yeah.....but that is for the Western Blot. Miamia is doing the urine test I believe. There are no antibodies involved in the urine test.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
One of the other major things is he knows I don't have alot of money and he thinks the only antibiotics I will baable totake are these injections and they are really expensive the only way they are covered at all is if you have a diagnosis- medically- as in by a test- f-ing insurance companies!! So he really wants me to be covered so he is trying to get me to test positive on a test that they will recognize.

That makes sense. I think for IV antibiotics or anything like that...they really want to see a positive test. I dont think that you're hard to diagnose....you had alot of bands show up in your Western Blots and you had a positive c6 peptide test... apparantly its difficult to test positive with that one. I would bet money if you redid the Western Blots after antibiotcs...you would be VERY positive.

The whole process of getting diagnosed is a drag for all of us. :(

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
That pie WAS good...I looked for one last year and they didn't have one, so I was really excited when I saw it. Heck $10 is nothing when we're talking pumpkin pie, lol, it was worth every CENT! :D

It SURE was!! I just finished it off today. Yeah....its pretty darned unbelievable that I didnt react to it. :huh:

Another Xmas miracle is the fact that I didnt Rachel the little pie on the first night. :lol:

I made it laaaaaaast. If they still have any I'll buy another one. Holidays arent over yet right?? There is still New Years....so there *may* still be PIE. :o

I hope you're seeing Anna for your your BioSET testing...she's the best one there. I cant wait to hear how it goes for you. :)

AndreaB Contributor
AndreaB
Posted
I am just so wishing for great health and well-being to all of you/us in 2007. (I know, premature but who knows when I"ll catch up again). :huh: My resolution is to finish painting my house, and get all closets/cupboards/drawers really organized - and stay that way. :ph34r: Kinda hard for me, I clean up my creative bombs/messes quickly sometimes and just throw things in drawers and boxes. Must fully organize now that I have energy.

Well, must get ready for work. Had several wonderful gluten-free meals at friends'/family's over the holiday, it was wonderful, they just simplified and followed my instructions and it worked so well. Brought me much joy.

Wub you guys.......see ya!

Good to see you Susan! :)

Glad your holidays went well and you are sounding so up. :) Work definately interferes with playing on the computer (or elsewhere), but unfortunately is a necessity in life.

dlp252 Apprentice
dlp252
Posted
It SURE was!! I just finished it off today. Yeah....its pretty darned unbelievable that I didnt react to it. :huh:

Another Xmas miracle is the fact that I didnt Rachel the little pie on the first night. :lol:

I made it laaaaaaast. If they still have any I'll buy another one. Holidays arent over yet right?? There is still New Years....so there *may* still be PIE. :o

I hope you're seeing Anna for your your BioSET testing...she's the best one there. I cant wait to hear how it goes for you. :)

I Rachelled my pie for you, lol. But, I'm thinking of getting another pie myself, lol. Crazy! I'm going on a Saturday...I think you said she might not work on Saturdays. I'm hoping she ALWAYS does the initial testing no matter what day it comes on...but maybe wishful thinking. I'm really hoping they can clear dairy, lol. I miss that more than gluten! And, then I could eat as many pumpkin pies as I want, lol.

Speaking of BioSET, do they give you any kind of printout of what they find? I don't know how I'll remember everything.

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      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
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