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

dlp252 Apprentice
I really needing some suggestions for what to do to help my husband. We've had a totally weird experience and are at a loss.

Gosh, I don't know!

When I get air hunger it is like I cannot get enough air. I feel like I'm taking half a breath rather than a full breath. I was tested for asthma because my sister has it and I had this trouble breathing, but they said I was actually hyperventilating. I was getting enough air.

Sometimes I have the air hunger in the presence of heart issues like palpitations or skipping beats, but I can have just the air hunger without the palpitations.

This is how it is for me too. I feel like I can't get a full breath. Then I try to take a long slow breath, but still can't get a full one. I have the palpitations too (not as much as I did last year though), but usually not at the same time as the air hunger. The air hunger has improved a little too...don't notice it happening as much.


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
AndreaB Contributor

Sherry,

I don't know either, but I would suspect something with the humaworm since it started after that. Could it be parasite related?

mftnchn Explorer

My word, what came up under skin parasites was horrifying. I didn't know about all of this stuff. Maybe that is what he has.

Sherry

CarlaB Enthusiast
My word, what came up under skin parasites was horrifying. I didn't know about all of this stuff. Maybe that is what he has.

Sherry

Omg .... you might be onto something! ;)

I know that the Humaworm is supposed to kill more than intestinal parasites .... it's supposed to work on the whole body.

confused Community Regular

Sherry, Have you tried putting tea tree oil on the rash and see if it gets better. Maybe its an yeast infection of the skin or something. Im actually battling an nasty rash on my leg. At first i thought it was an DH outbreak but i havent been glutened.

paula

CarlaB Enthusiast

Here's an interesting talk by Dr. J in SC about Lyme.

Open Original Shared Link

Green12 Enthusiast
I really needing some suggestions for what to do to help my husband. We've had a totally weird experience and are at a loss.

Beginning in Feb (right after our return to the USA and about the time he started humaworm and I finished), we both got itchy necks. He also got an itchy patch on one leg, that started first. The leg looks like dry skin but with areas that are broken down. My neck issues were less severe and rarely showed any rash or hives, maybe one or two occasionally. His would have hives on the neck and itched mercilessly. He tried various kinds of ointments and creams and nothing helps. Doctor told him the leg problem was dry skin but it never responded to any lotion.

Mine went away gradually, maybe after I got back to China I haven't had it. His continued. We have tried laundering everything. Soaps and stuff were not changed. It has been totally limited to these two areas of the patch on the leg and his front neck.

Now his leg seems to be improving, and his neck is itching less but his has small solid lumps below the surface of his skin on his neck. One has brown discoloration around it, and looks a little like a zit but he says it doesn't feel like a zit. The others just feel like little solid bumps and look a little whiter than the normal skin around it. I count a half dozen of these lumps. They are a little tender or irritated to the touch.

This is so totally weird that we don't even know what to research on google. Out here we don't have too many options for getting it looked into. He has never really been an allergic person.

Could this be something triggered by humaworm? Julie does this sound like angioedema?

Any ideas would be greatly appreciated.

Sherry

Sherry,

My angioedmea is more red and splotchy when it starts out, sometimes accompanied by a few small red blister-like looking spots, then the broken out area grows bigger and bigger and then travels around the body. There is lots of heat radiating from the spots and they are extremely painful. It typically involves the extremeties (hands, feet, face, eye lids, ears, lips, elbows, etc) but my case has not been typical and the breakouts have been anywhere and everywhere.

From what you describe here it doesn't sound like what your husband is experiencing is angioedema.

I agree with the others, that Humaworm might be suspect. Rashes and other conditions that invovle the skin are generally toxins trying to move out of the body.

Could you email Humaworm and explain the spots/symptoms and see what they might suggest?

What about getting a session of accupuncture?

An epsom salt bath?


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



Celiac.com Sponsor (A8-M):



Guest LittleMissAllergy

Hi everyone-

Sorry I got so behind on the posts- gosh, ya stay away for a day and all of a sudden you're behind 5 pages!

So anywho...thanks for wanting to log my info, I'll tell you when I get the western blot back! I'm not sure that'll be too conclusive because my celiac disease 57 was 44...and I hear the lower it is, the less likely your western blot come up positive. Did you all get positives?

Oh and I wanted to respond to whoever asked about air hunger- I get two different types. One is when I get the severe neck pain, which I don't really count as air hunger but it still feels like I can't breathe. It feels like someone has a hand around my throat and is clenching, which makes my muscles in my neck feel as though they are tightening on the outside, which in turn makes my throat feel like it's closing on the inside.

The thing though that I get that I really think is the true "air hunger" symptom (which could be different for everyone really though...) is when I feel like my heart is starting to race and I'm not getting enough oxygen in my body. My lungs don't feel like they're taking in air- my breathing feels shallow. Then it feels like my heart is slowing, and my body feels weak because I just don't feel like I can breathe in a deep enough breath.

So I have a question....I'm supposed to start taking antibiotics soon (whenever I feel ready), and I'm really hesitant and nervous. I'm trying to time it out so I don't herx on a weekend so my doctor will be around. I know that herxing for everyone is probably very different, but after taking the first antibiotic, how long do you think it'll be until I herx or at least start to feeling sicker? I can't remember the exact protocol right now, but I think it's first day Nistatin, 3 days later Biaxin then 3 days after that Doxycycline....but I'll check into that because I know that can probably help me determine when I'll probably start feeling sick as well.

CarlaB Enthusiast

Well, you shouldn't herx on the Nystatin unless you have a yeast problem.

Generally, four days seems like the average time to start a herx from a new med, but some herx right away, and some don't herx for a month.

I started Doxy last Wed ... by Sunday afternoon, I felt like I was hit by a Mack truck.

dlp252 Apprentice
So anywho...thanks for wanting to log my info, I'll tell you when I get the western blot back! I'm not sure that'll be too conclusive because my celiac disease 57 was 44...and I hear the lower it is, the less likely your western blot come up positive. Did you all get positives?

I had some positives. My IgM test was negative overall with only a couple of bands IND, my IgG was positive (Igenix, but not CDC positive) on several bands. My CD57 score was 84. I was positive enough for my doctor to think I was positive, lol.

CarlaB Enthusiast
Did you all get positives?

I was CDC IgG positive with 8 positive bands.

I never had the CD57 test. I think mine would have been pretty low .... it seems that everyone's fell into about the right place based on how everyone felt. At the time of diagnosis, I was pretty disabled .... spent my days either in bed or on the couch.

confusedks Enthusiast

LittleMiss,

I would start the abx right away. I herxed like CRAZY when I first when on abx...but I was only on zithromax. I'm now on 2 abx and Mepron. My first really bad herx was Christmas Eve, lol...how convenient! I don't think there is anything your Dr would do if you're herxing. And, if you're having some sort of emergency, you either go to the ER or call your Dr's emergency line/cell phone.

I was not positive by either Igenex or CDC standards. The bands that were positive were lyme specific, and since I had a bull's eye rash 10 years ago, based on that and symptoms and a really low CD57 (it was 24) my Dr diagnosed me.

Rachel--24 Collaborator

LittleMiss,

I had negative Western Blots. I had 4 positive bands (41,66,58,30)....none were Lyme specific except for possibly band 30... but not enough valid info. on that at this time.

I had a very positive IFA....but again, not 100% specific for Lyme.

Negative co-infection tests.

My CD57 was 78 (not bad).

Lyme turned out to not be a huge factor in my illness....most likely I wont ever require antibiotic treatment for it.

tabasco32 Apprentice

Hey everyone,

So I am a week into the zeolite. I was fine the first week but starting yesterday, bad constipation. :o

I never get real constipated. I feel like I ate like 10 hershey bars or something. I am taking my vitamin c and magnesium which always work but, noo, nothing.

I wonder why the zeolite would cause such constipation. My stool has also been darker. I hear that that happenes because I am passing metals?

I can't take much burbur with the zeolite because it makes me feel like I want to knock someone's lights out. Funny I know. :huh:

Anyways, I don't know what air hunger feel like but I do get heart palpatations.

BTW Carla what brand of zeolite did you use?

CarlaB Enthusiast

I use Nutramedix Zeolite. You only take it every third night. They have two kinds ... regular and HP. First you take one bottle of the regular. Afterward, you take a bottle of the HP. Apparently they have some kind of energy charge that makes the Zeolite take out different metals. The first one takes out the metals that need to be removed first, then the HP takes out the rest, including mercury.

Sorry about the constipation.

Guest tamedandfoxed
Adam just brought me lunch (unrequested by me!!!) of a half sandwich, soup and potato chips from Panera Bread .... I ate the soup and chips, can't even look at the sandwich.

Carla this made me smile, since i work for Panera (irony incarnate). I love the potato chips. they are something i really miss now that i'm on the candida diet "for real"...sigh. but hopefully i'll be able to quit soon and wont be tempted! Panera treats its employees like dog turds.. just, FYI.. but good things to eat! well. not GOOD, but tasty! ;)

I really needing some suggestions for what to do to help my husband. We've had a totally weird experience and are at a loss.

Any ideas would be greatly appreciated.

Sherry have you tried French Green Clay? It's relatively cheap in bulk and really great at calming itchiness and pulling or helping to pull bad things out of the body. Good luck!

Katy

aprilh Apprentice
Sherry,

About the air hunger, I was diagnosed with asthma when I was about 10. It felt the EXACT same way air hunger feels for me. I actually don't really know whether I have asthma or its air hunger. I used to take asthma meds and they did help...so I'm thinking it is asthma. I should be re-tested.

But, assuming I do have air hunger and NOT asthma, it feels like you can't breathe...and I get faint too. My heart starts to race (resting my heart rate goes up to 120-130 bpm). It feels like my heart is being overworked to make up for the lack of oxygen.

I really don't know if I could answer because I really now don't know whether I've been having asthma or air hunger! :huh: I'm glad you brought this up...I'm going to ask Dr H on Saturday! :)

Kassandra, I'll be interested in what he says. I don't usually feel like I can't breathe and don't have the racing heartbeat. Just incredible fatigue, brain fog, and when I try to take a deep breath, that sensation of tightness.

I've been afraid to use my inhaler because it might be a steroid. I thought maybe when I took my antihistamine it got a little better.

When my yeast problem and leaky gut was pretty bad I had this air hunger/asthma type thing also. I would get heart palpatations and feel like I couldn't get a full breath. It was really scary for me and I went to the ER 3 times over it - before I realized it was from yeast or whatever. I thought I was having allergice anaphylaxis or something. Funny thing is in the ER they give you steroids - which made me worse. Then I took Paxil for the anxiety - which made me worse. Those were bad, bad days.

Now I really don't get this much anymore, but I do on occasion feel like I can't get a "good full" breath. Not bad enough to worry me, but enough to be noticed. Even when I am active and work out, I always feel like my breathing is just not up to par. Wierd huh?

Wonder if Bart is my problem???? Would my test results indicate that or is that another whole test altogether?

Now his leg seems to be improving, and his neck is itching less but his has small solid lumps below the surface of his skin on his neck. One has brown discoloration around it, and looks a little like a zit but he says it doesn't feel like a zit. The others just feel like little solid bumps and look a little whiter than the normal skin around it. I count a half dozen of these lumps. They are a little tender or irritated to the touch.

Sherry

I read when researching Humaworm accounts of some people having parasites right under the surface of the skin. It could either be that or possibly maybe toxins trying to get out. But considering you both have similar reactions and you would probably have similar parasites due to either the same foods or if they can be passed through the skin - it doesn't sound like toxins.

If you go on Curezone.com there is a special section for Humaworm. You can post your question and someone from Humaworm will respond. Are you finished with the Humaworm?

What does the stomach pain from Bart feel like? I have pains in my stomach most of the time. Its reduced by taking digestive enzymes, but still noticable when I press on my stomach area. Sometimes I don't notice that its there and I'll go to acupuncture and she'll press on my belly to see how its doing. Then I feel the little pains in there. She always says my digestion is off. I don't get D but I do get C. I haven't since I started the Naturcalm, but I would definately have C without it!

AndreaB Contributor

I've been going through a rough time the last couple days. I don't know if C started the downward spiral again, but I've had bad abdominal pain. I'm hoping it's nothing more than C as we don't have insurance and we really don't have the funds to have anything checked out. I do feel a little better today but still in lots of pain. :( :(

Hubby won't be home til late tonight so I'm on my own with getting the kids to bed. I crashed on the couch around 8 last night and woke up and went to bed around 10. Hubby was home last night to take care of everything, which was nice.

I don't really take care of myself and haven't been eating my fruits/veggies. I prefer to save the fruit for the rest of the family. I think lack of fiber on top of running out of Magnesium last Thursday made things worse again. I've got the Magnesium again so I'm hoping this will clear itself in a couple days.

Right now, it hurts to eat too. :(

April,

I like digestive enzymes. I cut back to only 2 a day but I still take those after dinner.

Rachel--24 Collaborator

Awww Andrea. :(

I'll be thinking about you and hoping that you're feeling better now that you have the magnesium again.

Sorry that hubby isnt home tonight to help you but glad he was able to be there yesterday.

Green12 Enthusiast

Lisa and Andrea both, sorry about the C and all the discomfort :(

Lisa, if this came on after the zeolite I guess I would tend to suspect that :huh: I don't know anything about it to say really. Can you contact your Dr about it? If mag and C isn't working try lemon juice in warm to hot water.

Andrea, you need to take care of yourself!!!! You can't take care of everyone else when you aren't in good health <_<

If you've been having more dairy in your diet that can be very binding/constipating, and then not a lot of fiber to move it through could be the source of pain :huh:

Hope the magnesium helps :)

AndreaB Contributor
Andrea, you need to take care of yourself!!!! You can't take care of everyone else when you aren't in good health <_<

If you've been having more dairy in your diet that can be very binding/constipating, and then not a lot of fiber to move it through could be the source of pain :huh:

Hope the magnesium helps :)

Hubby gave me the same lecture. :P

We had lots of dairy this weekend with mac and cheese, pizza, ice cream, yogurt, cheese and Monday was a bad snack/meal type of day since we were running most of the day. We usually don't have the mac and cheese and extra cheese either, but we do have pizza and ice cream every weekend.

confusedks Enthusiast

Ambien is no longer working!!!! It makes me feel loopy, but still wide awake! I'm glad I'm going to see Dr H this weekend, so we can figure out what the next best sleep med would be.

CarlaB Enthusiast

Andrea, take care of yourself.

Kassandra, Ambien doesn't work for me during a herx .... I'm tired and loopy, but cannot sleep. I have not had that much sleep since starting the doxycycline a week ago. :(

I just read on LN that one of the herbs in Enula is used for treating intestinal parasites .... I guess that explains why I'm seeing things.

confused Community Regular

Andrea,

Im sorry you are having an hard time. I seen your myspace thing said you were in pain and i was going to drop you a line, then one of the kids needed me and i forgot. You need to take care of youself. I have always had bouts of C and it is terrible. Maybe i need to try the magnessium.

I hope you feel better soon.

paula

mftnchn Explorer
Sherry,

My angioedmea is more red and splotchy when it starts out, sometimes accompanied by a few small red blister-like looking spots, then the broken out area grows bigger and bigger and then travels around the body. There is lots of heat radiating from the spots and they are extremely painful. It typically involves the extremeties (hands, feet, face, eye lids, ears, lips, elbows, etc) but my case has not been typical and the breakouts have been anywhere and everywhere.

From what you describe here it doesn't sound like what your husband is experiencing is angioedema.

I agree with the others, that Humaworm might be suspect. Rashes and other conditions that invovle the skin are generally toxins trying to move out of the body.

Could you email Humaworm and explain the spots/symptoms and see what they might suggest?

What about getting a session of accupuncture?

An epsom salt bath?

Thanks Julie and everyone else for your suggestions. Wayne's blisters are not painful, just itchy like hives. He doesn't have any creepy crawly sensations like some with parasites. I did write to Humaworm, I'll see what they say. My hubby is worried it might be skin cancer but I don't think that sounds like what it is. He won't be excited about repeating the Humaworm because it really gave him bad GERD.

Sherry

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748

    Jamie0230
    Newest Member
    Jamie0230
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...