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

  • Welcome to Celiac.com!

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



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

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

Omg...i Might Be On To Something

Rachel--24

Recommended Posts

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."

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

Celiac.com Sponsor (A8-M):


  • Replies 33.4k
  • Created
  • Last Reply
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.

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

Celiac.com Sponsor (A8-M):


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.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,356
    • Most Online (within 30 mins)
      7,748
    Deb powell
    Newest Member
    Deb powell
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.1k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease.  I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way.  I appreciate your information and advice! 
    • trents
      Waiting on biopsy results but wanted opinion on bloodwork

      By trents · Posted

      Let's talk about terminology for the sake eliminating (as much as possible) confusion. Unfortunately, the terms "gluten sensitive" and "gluten intolerant" have, historically, been used indiscriminately. There are two primary categories of gluten disorders whose "official" terms are 1. celiac disease and 2. Non Celiac Gluten Sensitivity or NCGS for short.  I believe there is an evolution toward using the term "gluten intolerance" to refer to celiac disease and "gluten sensitive" to refer to NCGS. I say that because the words "gluten sensitivity" are actually found in the official medical term for the non celiac medical disorder involving gluten. Does that make sense? The difference between celiac disease and NCGS is that celiac disease causes inflammation in the small bowel lining and (over time) does damage to it so that it becomes inefficient in absorbing nutrients from what we eat. This is the area of the intestinal track where all of our nutrients are absorbed. Of course, this can lead to any number of other medical problems. NCGS, on the other hand, does not cause inflammation or damage to the lining of the small bowel and therefore does not produce the antibodies that celiac disease antibody tests look for. Neither will NCGS, therefore, produce a positive biopsy result. NCGS and celiac disease, however share many of the same symptoms in the area of GI distress and NCGS is 10x more common than celiac disease. There is, at the present time, no defining test for NCGS so an NCGS diagnosis is arrived at by first eliminating celiac disease for which we do have tests for. Having said that, some experts believe that NCGS can be a precursor to celiac disease.  Yes, you are correct in stating that both conditions require a gluten free diet.  So, in the absence of official testing for celiac disease (and official testing done under the proper conditions) a person who is experiencing distress when consuming gluten cannot be certain whether they are dealing with celiac disease or NCGS. Not to have an official diagnosis of celiac disease while actually having the condition makes it difficult for some folks to stay on the gluten free bandwagon. It's just the psychology of the situation and wanting to rationalize away a very inconvenient and socially isolating medical condition.
    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you!  This is super helpful and confirms everything I have read. I was definitely eating lots of gluten before both testing and endoscopy. If the biopsies do come back negative, I'm wondering how conclusion/distinction is made between celiac and gluten intolerance is made.  Or does it matter because presumably recommendation of gluten-free diet will be the protocol??  
    • trents
      Weak positive blood test and marsh type 1

      By trents · Posted

      You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating. The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.
    • Rogol72
      How to navigate living with dermatitis herpetiformis

      By Rogol72 · Posted

      Hey @Morgan Tiernan, Sounds just like my experience. I was diagnosed with dermatitis herpetiformis over 10 years ago. It appeared suddenly as a very itchy rash which looked like Eczema. When a steroid cream didn't clear it up, my Dermatologist (who had come across it before) suspected dermatitis herpetiformis and performed a skin biopsy which came back positive for dermatitis herpetiformis. The important thing is to get a definitive diagnosis of dermatitis herpetiformis. What you've described sounds like classic dermatitis herpetiformis though. Hopefully, your Dermatologist has come across dermatitis herpetiformis before and performs the skin biopsy correctly as trents mentioned. I've had the blisters on the knees, hips, forearms/elbows or anywhere that pressure is applied to the skin ... from clothing or otherwise. They itch like nothing on earth, and yes salt from sweat or soaps/shower gels will irritate a lot. I've been on Dapsone and it is very very effective at eliminating the dermatitis herpetiformis itch, and improved my quality of life in the early stages of getting on top of dermatitis herpetiformis while I adjusted to the gluten-free diet. But it does have various side effects as trents said. It can effect the red blood cells, lowering hemoglobin and can cause anemia, and requires regular blood monitoring whilst on it. You would need to consider it carefully with your Dermatologist if you do have dermatitis herpetiformis. Here's a very informative webinar from Coeliac Canada discussing everything dermatitis herpetiformis related.  https://www.youtube.com/watch?v=PAdmsNiyfOw I've also found this recent interview with a Dermatologist about dermatitis herpetiformis to be educational.  https://www.youtube.com/watch?v=rZnLeKutgUY Keep the chin up and keep advocating for yourself for a proper diagnosis. Though it sounds like you're on top of that already. Are you in the UK or Ireland? I'm curious because your surname is Irish. 
×
×
  • Create New...