Jump to content
  • Welcome to Celiac.com!

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




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


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

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

Green12 Enthusiast

Hi everyone, I am so far behind on all the latest scientificness and events in everyone's lives. Just wanted to say hi and let you all know I am thinking of you :wub:

I have a little glitch in my Igenex testing, my practitioner called and said they can send out a kit to anyone but it has to be signed by an MD, a DO, or a psychiatrist......a psychiatrist? :lol:

Anyway, trying to figure out how this can be done for me.


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
AndreaB Contributor
Andrea, there are three people, but the numbers are four across, I'm confused.

Miamia posted her IgM and IgG. Since there was some differences I posted both of them as well.

So it goes Rachel, Rhonda, Mia and Mia.

I have a little glitch in my Igenex testing, my practitioner called and said they can send out a kit to anyone but it has to be signed by an MD, a DO, or a psychiatrist......a psychiatrist? :lol:

Anyway, trying to figure out how this can be done for me.

Hmmm, that throws a wrench in the works doesn't it? :(

CarlaB Enthusiast
Hi everyone, I am so far behind on all the latest scientificness and events in everyone's lives. Just wanted to say hi and let you all know I am thinking of you :wub:

I have a little glitch in my Igenex testing, my practitioner called and said they can send out a kit to anyone but it has to be signed by an MD, a DO, or a psychiatrist......a psychiatrist? :lol:

Anyway, trying to figure out how this can be done for me.

Yep, has to be ordered by a doctor ... I guess A psychiatrist is licensed to prescribe medicine so he qualifies. :blink: Maybe a doc would give you the test if you had the attitude, I've tried everything else, I just want to rule this out, too, since I'm concerned and my symptoms match. This is what I said to my doc who then told me it was a good idea for me to take the test to ease my mind, but she was positive it'd come back negative. How would she know? I just don't understand how she could say that? :blink:

Miamia posted her IgM and IgG. Since there was some differences I posted both of them as well.

So it goes Rachel, Rhonda, Mia and Mia.

Hmmm, that throws a wrench in the works doesn't it? :(

Thanks, I figured it was something like that, but didn't know who had two sets of numbers.

I wish I understood this better .... Mia's looks like more of the important ones are positive than either Rhonda or Rachel. Is that right or am I missing something?

jerseyangel Proficient
Hi everyone, I am so far behind on all the latest scientificness and events in everyone's lives. Just wanted to say hi and let you all know I am thinking of you :wub:

I have a little glitch in my Igenex testing, my practitioner called and said they can send out a kit to anyone but it has to be signed by an MD, a DO, or a psychiatrist......a psychiatrist? :lol:

Anyway, trying to figure out how this can be done for me.

Well, hi Julie :D I've missed you!

I can see how this news would throw a monkey wrench in your plan to be tested--your doctor won't do it (sign off) for you?

I also wanted to tell you that my Bare Minerals makeup is not agreeing with my skin anymore :angry: I remember you having a problem with it, too. I ordered some things from Smashbox via Sephora. We'll see how that goes....what did you end up using?

Green12 Enthusiast
Well, hi Julie :D I've missed you!

I can see how this news would throw a monkey wrench in your plan to be tested--your doctor won't do it (sign off) for you?

I also wanted to tell you that my Bare Minerals makeup is not agreeing with my skin anymore :angry: I remember you having a problem with it, too. I ordered some things from Smashbox via Sephora. We'll see how that goes....what did you end up using?

Hi Patti, I've missed you as well :)

I don't have a doctor, nor insurance, so I don't know how I will be able to swing this. My practitioner has a group of collegues with a variety of titles, acupuncturists, homeopathic doctors, chiropractors, naturopaths, but obviously those don't apply.

The Bare Minerals, I completely stopped using it. I am so sorry to hear it is bothering you now :( I think I am allergic to the talc in it, or something else that is definitely not agreeing with my skin. I went back to a foundation I buy at the health food store and then finish it off with Burts Bees powder.....let me check on the brand of the foundation and I will get back to you :)

Where is Beverly?

dlp252 Apprentice

Hi Julie! Some chiropractors are MDs and can prescribe...maybe the chiropractor at her office is??

jerseyangel Proficient

Julie,

Beverly is around--I was just talking to her on another thread.

I never thought about the talc. I suspected the cornstarch, only because when I was snapping corn on the cob in half for my husband (I'm intolerant), my hands felt dry and itchy. Interesting....

That is a difficult situation you have--I don't see why they won't accept the signature of one of the practioners on your team--that seems unreasonable to me. :(


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



Celiac.com Sponsor (A8-M):



AndreaB Contributor
I wish I understood this better .... Mia's looks like more of the important ones are positive than either Rhonda or Rachel. Is that right or am I missing something?

Yep, I think hers look more positive for lyme too.

Rachel--24 Collaborator
These are my results- there are no definite positives

IgM Western Blot /my numbers for the IgG:

18 kDa. neg /18 kDa +

22 kDa. neg /22 kDa neg.

**23-25 neg /**23-25 kDa IND

28 kDa. neg /28 kDa neg.

30 kDa. ++ /30 kDa neg.

** 31 kDa IND /**31 kDa IND.

**34 kDa. Neg /**34 kDa IND.

37kDa Neg/Neg

**39 kDa. IND /**39 kDa IND.

**41 kDa. ++ /**41 kDa +++

45 kDa. neg /45 kDa +

58 kDa. +. /58 kDa ++

66 kDa. neg/66 kDa neg.

73 kDa. neg /73 kDa neg.

**83-93 kDa. neg /**83-93 kDa ind.

OMG miamia. :o

I have to say....I CANNOT believe your Dr. dismissed these results. I just dont know what to say. You really need to see a Dr. who is familiar with Lyme. These results are VERY much looking like you have Lyme Disease. Much more than mine and Rinnes results. I'm serious Miamia....you need to pursue this. If your Dr. dismissed these results he's not the right Dr. for you...not for Lyme anyway.

I'm pre-posting so I dont know if Rinne has seen these results are not or if anyone else has commented. If these were my results I would be much more certain that I have Lyme.

Thank God you found these results....I really think they mean something and further testing needs to be done or a Dr. who knows about Lyme needs to take a look at these results. Igenix clearly states on the results that IND's have clinical significance on double starred bands and further testing should be done. This would apply for only ONE indeterminate on a double starred band....you have SEVERAL. :blink:

You basically have a positive or weak positive on EVERY critical band indicating Lyme. I think your test is more positive then mine and Rinnes put together. :o

I am just dumbfounded that your Dr. would order these tests and then ignore the results. There should have been some follow up with results like this....even though they are "technically" negative. I would go so far as to say I'm more than 90% sure you have Lyme Disease based on these results. I dont know whether you have any Lyme Literate M.D.'s in your area but I would reccommend finding out and seeing a different Dr.

I cant even believe this....how long ago did you take this test??

Those Indeterminates mean that they found something....its a "weak" positive but the band was not dark enough to register as a +.

Its highly possible that if you started treatment those Indeterminates would then come back positive. Every single one of them are on the bands that are most specific for Lyme Disease. You have a high positive on band 41...if any ONE of those Indeterminates would have been a little stronger in intensity you would have had a positive test for Lyme Disease.

OMG...I'm sorry Miamia but right now I feel like I want to punch your Dr. for letting this go. The only thing I can think of is that he doesnt know anything about Lyme or how to read these test results. The thing that most bothers me is that it *says* right on the test that results like these (even if negative) need to be further pursued because the IND'S on double starred bands have clinical significance.

So yeah.....I want to punch him. :ph34r:

AndreaB Contributor
OMG miamia. :o

I have to say....I CANNOT believe your Dr. dismissed these results. I just dont know what to say. You really need to see a Dr. who is familiar with Lyme. These results are VERY much looking like you have Lyme Disease. Much more than mine and Rinnes results. I'm serious Miamia....you need to pursue this. If your Dr. dismissed these results he's not the right Dr. for you...not for Lyme anyway.

You basically have a positive or weak positive on EVERY critical band indicating Lyme. I think your test is more positive then mine and Rinnes put together. :o

That is what I was thinking.

Hopefully Mia will be able to go to the doctor in Hyde Park that Carla found out about.

Rachel--24 Collaborator

I have to go back and see what else has been posted...I am sooooo dumbfounded right now. :huh: Oh yeah....not to mention SHOCKED that yet another Rachelvillian most likely has Lyme Disease. :blink:

Miamia

((((((((((((hugs))))))))))))

AndreaB Contributor

Rachel,

What's the difference between the IgM and the IgG?

More of Mia's IgG was positive than the IgM and when we get Carla's results I'm going to want to add hers so it's all readable.

Rachel--24 Collaborator
Rachel,

What's the difference between the IgM and the IgG?

Western blot report usually contains two parts: IgM and IgG. These are immunoglobulins (antibody proteins) produced by the immune system to fight infection.

IgM is produced fairly early in the course of an infection, while

IgG response comes later.

Some patients might already have an IgM response at the time of the EM rash; IgG response, according to the traditional model, tends to start several weeks after infection and peak months or even years later. In some patients, the IgM response can remain elevated; in others it might decline, regardless of whether or not treatment is successful.

Similarly, IgG response can remain strong or decline with time, again regardless of treatment. Most WB results report separate IgM and IgG band patterns and the criteria for a positive result are different for the two immunoglobulins.

***Igenix does NOT have seperate criteria for positives on IgG and IgM. Other labs require that 5 bands be positive on the IgG for a positive result. This makes for ALOT of false negatives. By Igenix criteria, The IgG is considered positive if 2 or more of the double starred bands are present. The criteria is the same for IgM.

More info about bands...

certain other bands are considered highly specific for Bb (Lyme) --

31 kDa band, for example, or

34 or

39 or (anywhere between 22 and 25).

Also thought to be species-specific are

The 83 and

94 kDa bands.

Many Lyme disease scientists believe that any patient whose IgG Western blot exhibits bands at, say, any three (or even two) of these locations almost certainly has Lyme disease, regardless of whether or not any other bands are present. They feel that these bands on a Lyme Western blot are simply more meaningful than other, less specific ones and that a rational interpretation of a WB result should take this into account. Unfortunately, this does not often happen, and will happen even less with the new CDC criteria.

dlp252 Apprentice
OMG...I'm sorry Miamia but right now I feel like I want to punch your Dr. for letting this go. The only thing I can think of is that he doesnt know anything about Lyme or how to read these test results. The thing that most bothers me is that it *says* right on the test that results like these (even if negative) need to be further pursued because the IND'S on double starred bands have clinical significance.

So yeah.....I want to punch him. :ph34r:

Ditto!!! Maybe I should practice some of my ant relocation techniques on him! Unbelievable!

AndreaB Contributor

Rachel /Rinne /Mia

IgM Western Blot /IgG: /IgG

18 kDa. neg /18 kDa neg. /18 kDa +

22 kDa. neg /22 kDa neg. /22 kDa neg.

**23-25 neg /**23-25 kDa neg. /**23-25 kDa IND

28 kDa. neg /28 kDa neg. /28 kDa neg.

30 kDa. + /30 kDa neg. 30 kDa. ++ (IgM)/30 kDa neg.

** 31 kDa neg /**31 kDa IND. /**31 kDa IND.

**34 kDa. IND /**34 kDa IND. /**34 kDa IND./37kDa Neg

**39 kDa. IND /**39 kDa IND. /**39 kDa IND.

**41 kDa. ++ /**41 kDa pos. /**41 kDa +++

45 kDa. neg /45 kDa neg. /45 kDa +

58 kDa. neg. /58 kDa pos. /58 kDa ++

66 kDa. + /66 kDa neg. /66 kDa neg.

73 kDa. neg /73 kDa neg. /73 kDa neg.

**83-93 kDa. neg /**83-93 kDa neg. /**83-93 kDa ind.

Redone with Mia's IgG only except one IgM as noted.

happygirl Collaborator

x

AndreaB Contributor

Rachel,

Your last post means that Mia should have been diagnosed positive.

rinne Apprentice

Miamia, OMG, I am sending you hugs right now. Yes to everything Rachel said.

Oh, and :ph34r: Lyme Clan :ph34r::).

Rachel--24 Collaborator

Andrea....I never posted my IgG results but here they are

18 kda. neg

22 kda. neg.

**23-25 kda. neg.

28 kda. neg

30 kda. neg

** 31 kda. neg

**34 kda. IND

**39 kda. IND

**41 kda. ++

45 kda. neg

58 kda. +

66 kda. neg

73 kda. neg

**83-93 kda. neg

My IgM

18 kda. neg

22 kda. neg

** 23-25 kda neg

28 kda. neg

30 kda. +

**31 kda. neg.

**34 kda. IND

**39 kda. IND

**41 kda. ++

45 kda. neg.

58 kda. neg.

66 kda. +

73 kda. neg.

**83-93 kda. neg.

Now if Miamia's were shown like that with the positives in red....you would see a big diference in how much she looks positive for Lyme Disease.

This is what her Dr. should have payed attention to:

*****Presence of only one double starred band or Indeterminate double starred bands in a negative report may indicate clinical significance. Therefore, we recommend testing with another method and/or retest in 4-6 weeks.*****

It clearly states this right on the test results.....as you can see by looking at her results (I think they are on the last page?)....she has MANY Indeterminate double starred bands.....only ONE can indicate clinical significance. She has all of them....thats why I'm dumbfounded that there was no follow-up. :huh:

Rachel,

Your last post means that Mia should have been diagnosed positive.

Her Dr. should have looked at this and realized that she *most likely* has Lyme and pursued this before all else.....instead he is treating her for Candida....which is there BECAUSE she *most likely* has Lyme.

And yes....I am still wanting to punch him! :ph34r:

happygirl Collaborator

x

jerseyangel Proficient

Sadly, the same thought went through my mind. <_<

rinne Apprentice

I suspect it might be why Igenex sends out a copy of the results to each person who is tested.

Rachel--24 Collaborator
Oh, and :ph34r: Lyme Clan :ph34r::).

:lol::lol::lol:

Rinne.....you crack me up with that. :lol:

jerseyangel Proficient
I suspect it might be why Igenex sends out a copy of the results to each person who is tested.

Yea--because even they know that many times the doctors have no idea.

rinne Apprentice

Rachel, I do try to resist. :lol:

:P

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    2. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    5. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,153
    • Most Online (within 30 mins)
      7,748

    Mmoc
    Newest Member
    Mmoc
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • Create New...

Important Information

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