Home Forums General Discussion Gluten Herx?

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  • #302634
    whaleharbor
    Keymaster

    Just thought I'd share this the group.

    I've been gluten free before in hopes of it helping my RA but back when I was herxing with the AP and then I “fell off the wagon.”

    In an effort to see if it would help me, I recently went 100% gluten free, cold-turkey again.  I have not been tested for any gluten sensitivity or the like but I figured with a history of Graves Disease (overactive thyroid) now in remission (God bless), RA and suspected PCOS….all related to celiac and/or gluten sensitivity…well..why not.  I figured it can't hurt to go gluten free for a while.

    Long and short is that I have over the past few weeks experienced herxing (not flares herxing) similar to what I experienced initially on AP.  A check on the internet and especially celiac.com yielded a ton of other people who experienced what they call “herxing” or “a healing crisis” or “retracing” of their symptoms when they intially went gluten free.

    As so many of us here are trying, do this or have tried this I thought I'd share.

    Good news is that the herxing seems to have passed with an even lessening in some of my remaining perpetually swollen spots.  Hmm…interesing hugh?

    Wondering if any of you experienced similar.

    – –  whaleharbor

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #333491
    Kim
    Participant

    [user=217]whaleharbor[/user] wrote:

    Wondering if any of you experienced similar.

    This is interesting, as I've been gluten-free since the beginning of the year after testing positive on a Celiac test, and honestly don't feel any different.  I know when I've had some hidden gluten because I get mouth sores, but no noticeable gut issues, etc.

    Just curious…….what were your herx symptoms?

    Take care…….kim

    #333492
    Marie
    Participant

    YES, I had a significant herx when I went off gluten a year ago.

    My bugs seem to live in my tendons and ligaments, particularly tendons and ligaments I've injured in the past, like my achilles tendons, my plantar fascii and my iliac crests (your “hips”).  About a week after going off gluten, those areas were SCREAMING in pain.  The pain lasted for about a week and then dissipated.

    I also herxed in my gi tract and had really bad diarrhea for a month. 

    I didn't know what it was at the time, since it was my first herx.  I've had a fex herxes since then, and the tendon symptoms are all the same. 

    #333493
    Lynne G.SD
    Participant

    Hi Kim;
        My terrific doctor  says that since one person in a hundred is celiac,know it or not, and that people with celiac and have their immune systems compromised by gluten are the people that get sick.That make perfect sense.Next on her list is lyme and then chemical sensitivities.No matter how you look at it,our once healthy immune systems are too busy fighting those problems and do not have the strenght to fight off any micoplasma infection that we get.
       Richie thinks that it was aircraft fuel that trigered his SD and I am very sure he is right as that stuff even alters one's DNA.I had exposure to the stuff for 25 years also but at least it was not as strong as I was inside the terminal but we sure got a good whiff of it as the aircraft left the gates.Add that to my unknown celiac and I was an accident waiting to happen.
              Doctor says we can never really get well until we can avoid our triggers for  a few years as it takes that long for the body to repair itself.On top of that we have to conquer the micoplasma infections.Oh such fun!

    #333494
    Kim
    Participant

    Lynne,

    You just described me to a “T”.  I went from being super healthy to super sick in a short period of time. 

    For the chemical sensitivities ~ we'd just built a new house and there was all the out-gassing from new carpets and building materials.  I did all the landscaping (every tree, shrub, and flower) for an acre of land and used chemicals.  Mind you, I didn't have prepared beds to plant in so there was a lot of work to do first, I had to clear out a patch of woods in the back to make a woodland garden ~ 20 tick bites later and Lyme disease, it's a very pretty garden. 😕  We have lots of wild animals on our property and I shutter to think of all the droppings and parasites I've been exposed to in addition to the bites. 😯  Didn't know I had Celiac until I was sick and looking for answers.

    For the stressors ~ during this same time my first grandchildren were born, twins.  What a joy, but they lived 5 hrs away so I was going back and forth quite a bit and driving home wiped out.  Also during this time, my family in New Orleans was hit by Hurricane Katrina.  Since I was the only family member not there and had a phone, I was the contact center and the one trying to track down everyone.  Calling rescue centers, not knowing where anyone was for days, and looking at the horrific pictures on TV was the final straw.  It was then that my immune system crashed in a big way.

    Now, after 4 years I'm about 90% better, but man has it been a fight.  My goal now is to be healthier than I was when I got sick so I'm pursuing avenues like food sensitivities and the like. 

    We're kind of in the same boat……..the SD is behind us, but a constant reminder that if we screw up and become compromised again, it could be trouble. 

    Take care, and thanks…….kim

    #333495
    whaleharbor
    Keymaster

    Kim,

    To answer your question, I had classic herx symptons where a flare would occur for a short period of time and then dissipate.  Also stomach issues (that I had not had before)…plus a strange return of the weirdo tiredness that I have before an RA flare…that just dissipated and thankfully did not turn into a flare.  This is a similar herx pattern that I experienced when first starting AP.  Weird hugh?

    So…it could be…

    1.  all in my mind.
    2.  more AP herx's
    3.  RA flares.
    4.  nothing.
    5.  that gluten compromises our immune system and the removal thereof results in a die-of.
    6.  that gluten compromises the absorption of antibiotics and the removal thereof results in a die-of.
    7.  that gluten somehow feeds mycoplasma and the removal thereof results in a die-off.
    8.  who knows.

    I found it interesting that some on the celiac forum spoke of their “herx's” which they also referred to as healing crises or retracing (new terms I'd never heard before).

    — whaleharbor

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #333496
    Kim
    Participant

    Whaleharbor,

    This stuff can really make you crazy, eh?

    Take care…..kim

    #333497
    orchid
    Participant

    Has anyone had the ALCAT test that someone mentioned on here? It tests for food allergies at a cellular level, apparently? Much more accurate than the tests done at your allergist's office.

    I'm just very curious about this whole food/allergy connection – since some doctors (Mercola, etc) think you can put RA into remission on diet alone.

    I guess I'm still a bit confused — we all seem to have some form of mycoplasma in our systems that is “triggered” by some stressful event which in turn makes our systems more sensitive to this bacteria.

    But, can we really keep it in remission by just avoiding certain foods that we are sensitive too, which causes this “allergic reaction” or is it truly necessary for everyone to be on antibiotic as well?

    I'm going to read Dr. Brown's book again – but I don't think he talks about diet at all – or am I wrong?

    #333498
    Lynne G.SD
    Participant

    Hi Girls;
         My doctor had my food sensitivity test done by U.S Biotek
    13500 Linden Ave. North
    Seattle,Washington 98133

    I had the test done 5 years ago,it covers 96 foods .Test is for IgG and IgE.
    Your doctor takes a blood sample and sends it to them.They return the info to the doc who will then discuss it with you.The results come in 2 pages with each food charted as to ..no reaction…low..medium …high
    Foods from low,med.and high are to be avoided for at least 8 months and the firts foods you can reintroduce to your diet are the ones in the low category.It cost 92.00$ at that time.
                        Lynne

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