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Gluten Challenge

Discussion in 'Gastrointestinal and Urinary' started by antares4141, Oct 5, 2018.

  1. antares4141

    antares4141 Senior Member

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    Truth or consequences, nm
    Been eating bread, pizza, lasagna, raisin bran for the last 10 days. Better than sex! Not that I would know.

    Been a serious gluten avoider since 2011. Virtually none of the symptoms I had before I quit have come back.

    Stomach bloat, neuropathy in arms, heavy salivation, feeling like I have been poisoned, death naps after meals, overly sensitive
    esophagus, air hunger, pain under right rib, blisters on inside of lips,
    Generally Lower blood pressure, high heart rate,
    proctola flugex, hard to describe swelling in throat.

    Still have fatigue, pem, brain burn, brain fog, mold, chemical sensitivity, weird myalgia like headaches, soars in roof of mouth and gums, pain that travels around my head almost like sciatica does to lower limbs. sleep disorder, and probably some other symptoms. There is some overlap with these between G and GF, and they are not all at the same time obviously these come and go.

    I have an appointment to have an endoscopy on the 15th just ten days from now. Don't think that will be long enough to find anything out for sure so I'm going to have to extend that date. Problem is I won't be able to do it till January when I am back in NM.

    Anybody have experience with gluten challenges?
     
    pattismith likes this.
  2. Galixie

    Galixie Senior Member

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    I am currently back on gluten after having been off of it for a couple of years.

    My possible issues with gluten are a convoluted story that started with finding out I was B12 deficient. Blood tests for celiac were done and *mostly* came back negative.

    The one antibody result that came back positive was not considered a marker for celiac but could be a marker for non celiac gluten sensitivity. I didn't know that at the time. I was simply told I didn't have celiac. So I continued to eat gluten.

    A year or two later I had an upper endoscopy done (still looking for the cause of the B12 deficiency) and that test also did not find celiac.

    That all seemed pretty conclusive, but I had finally started to question the one positive antibody result and I decided that the only way I was going to find out if I really was sensitive to gluten was to go without it for three months and see if it made a difference.

    I did that and I didn't think anything changed at all. So, after three months, I started eating gluten again. I got really dizzy. I went back through my journal and realized I hadn't been dizzy while I was off of gluten.

    There is something called gluten ataxia that is known to affect celiacs, but it is unknown whether it affects non celiac gluten sensitive patients. I decided to operate under the assumption that it could, and I stopped eating gluten until a few months ago.

    Having finally been diagnosed as having low blood volume and getting medication to address that problem, it brought up the possibility that my ataxia was never gluten related. In order to test that theory I needed to start eating it again.

    Things seemed like they were going ok, but I've been having stomach problems for weeks. I never had stomach problems before (on or off gluten), so I hesitate to think they are related to gluten. It's possible that it's just bad timing. I ended up having a second upper endoscopy done. It was negative for celiac again.

    Whatever my problem is, I don't think it's gluten.

    I hope you have an easier time finding answers than I did.
     
    antares4141 likes this.
  3. antares4141

    antares4141 Senior Member

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    Thanks for posting your experience Galixie.

    My endoscopy was scheduled I think for tomorrow (0ct 14, 2018) but I bumped the procedure up to the 30th cause not only am I not having symptoms I really seem to be a lot better. Which isn't remotely what I had anticipated would happen.

    So I'm thinking I am going to just cancel the procedure indefinitely until I have some of the symptoms I had 7 years ago before I quit eating gluten.

    I'm never going to be convinced that my quitting didn't resolve a lot of issues I had at the time. I can't explain why they are not coming back though.
     
  4. antares4141

    antares4141 Senior Member

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    I think I forgot to include ataxia in my first post as a symptom. It was a prominent one that has mostley gone away. But it wasn't over night. It took a few years being off gluten if I remember correctly. I think there were a few confounding factors. Mainly the building I was living in at the time. I doubt I'll ever really know though.
     
  5. Timaca

    Timaca Senior Member

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    I'm glad to hear that both of you were able to resume eating gluten. I went on an elimination diet several years ago and gluten was one of the many things I gave up. I tried reintroducing oats (gluten free) and wheat a few years ago and it didn't go well. With wheat I felt very off balance and had significant shooting nerve pain in my legs, along with joint pain.

    I have been able to eat berries this year though, and seeds. Cashews, pecans and almonds are also working for me. I am testing walnuts now. I hope to retest corn next as my reaction to that was less severe than to wheat or oats.

    It's always nice when I hear that people are able to reintroduce foods. Good for you! I would love to be able to eat oats and wheat again. Since I have been able to reintroduce several foods recently, and I hear your nice stories, maybe someone I can eat those foods again also!

    Best,
     
    antares4141 likes this.
  6. antares4141

    antares4141 Senior Member

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    Thank you Timaca. I am still waiting to see how long this last's. I remember when I first quit gluten I got like three days that were almost symptom free and I was mostly bed bound at the time. Than the symptoms mostly came back. It was a long time before all the above symptoms I listed abated.

    I still struggle with a lot of debilitating symptoms that seem to come more than go. Right now I am doing really well relatively speaking. I worked well over 8 hours around my house yesterday. Without even having to take a nap after lunch.

    A couple of months ago I would go days at a time without being able to do anything. And usually had to take long breaks after lunch. It was early summer out here in the S. central NM desert. I can't help wondering if it doesn't have something to do with all the airborne particles. Which there are a lot of because of the dry weather. And I got PEM that would last for a day or two from relatively little activity.

    There are so many confounding factors with an illness like this. And so many things you can only speculate about cause there is no practical way to test for them.

    When I first quit gluten 7 years ago I felt the same way as you. It almost seemed like the more things I avoided the more sensitive I got to the few things left that I was eating.

    I was eating nothing but french fries, meat and some fruit for a while. I hate to think of what that did to my circulatory system. Before you couldn't see any of my veins and my bp was always low. It's markedly higher now.
     
    Timaca likes this.
  7. Hip

    Hip Senior Member

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    I avoided gluten for decades, as I discovered long ago that it would cause depression within an hour of eating it (but no symptoms other than that). However, once I developed ME/CFS, I noticed that this bad reaction to gluten completely disappeared, and now I can eat bread, pizza, pasta, etc without any problems.

    It does say in the Canadian consensus criteria that when you get ME/CFS, new allergies can appear, or old ones may disappear. I guess this occurs because of some immune system changes that arise when you get ME/CFS. Gluten intolerance is not an allergy as such, but it's still caused by the immune response.
     
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  8. antares4141

    antares4141 Senior Member

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    Been a month since I started eating gluten every day. I went ahead and canceled my endoscopy. (again) For good this time at least until I am willing to go through a consultation again so that I can schedule another endoscopy.
    I'm probably going to reschedule in 2 months or when I start experiencing symptoms whichever comes first.

    Not going to do this until I am sure I have some symptoms I can attribute to the gluten. I've actually felt better than I have in a long time. Been working long days around the house without hitting a wall. (PEM)
    More or less anyways, nothing is black and white and everything is relative, if you know what I mean.

    My advice to anyone considering doing this just go ahead and start eating gluten. Don't talk to a gastroenterologist and schedule an appointment cause they might want you to go through the consultation process again if you cancel or try to reschedule.
     
  9. Hufsamor

    Hufsamor Senior Member

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    Norway
    How fascinating!
    I've had me for maybe 12 years.
    After a doc found antibodies against gluten in my stool, some 10 years ago, and I avoided it completely ,
    my stomach was so much better.
    And if I tried to eat only a small amount, my body was aching, my stomach was aching,
    and I would be bound to the toilet for ever.

    About two years ago I got much worse with my me/CFs.
    From 30-40 %job to almost housebound.
    Then I suddenly discovered I could eat some gluten again!
    Not like antares4141, but much more than before.
    And other foods I've not tolerated before.

    Big meltdown in my health, and all the sudden I could eat a sandwich every now and then.
    It didn't make sense.
    Never thought it could have to do with change in the immunsystem, but it doesn't sounds to crazy?
    I thought maybe my body after all felt less stressed when I wasn't working, even though I feel more crappy than ever.

    I can have some wine, and I have not had to use any allergic tablets (antihistamine) for the last year.
    This has been impossible for many, many years.
     
    antares4141 likes this.

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