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

Now Does This Make Any Sense?

danikali

Recommended Posts

danikali Enthusiast
danikali
Posted

Okay, don't get me wrong, I am happy that I haven't been feeling like complete crap these past few days, but it's really weird. I've been eating A LOT of gluten lately, and I only have little symptoms that come and go, and the big ones are not as bad anymore.

I was off gluten (well low gluten) for a few months, and then, I would feel amazing but then get completely HORRIBLY SICK out of nowhere!!!!! (Bad body aches, bad migrane, bad back aches, bad leg cramps, etc.) So anyway, for the past few weeks I decided to go on a COMPLETE gluten diet (for upcoming blood tests), gluten with every single meal! And even though I still have alternating constipation and diarreaha, and slight head aches, and slight leg cramps, and black and blue marks all over my legs, my back pains have mysteriously gone away!

So is it possible that my body has started to build up a "tolerance" to all of this? I mean, when I was on the low gluten diet, I would be fine for weeks and the BAM!!!!!!!!! Out of nowhere, my body would be stuggling to do ANYTHING!

Anyway, if anyone knows what may be going on.......... I don't know if this is possible, or if my body is playing tricks on me, or if I am miraculously on a road back to health....? It's like, I CAN EAT GLUTEN, I CAN'T EAT GLUTEN, YES I CAN, NO I CAN'T..............I really seem crazy! ;)

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

Celiac.com Sponsor (A8-M):


Katydid Apprentice
Katydid
Posted

<_<I had to reply to your post because I know exactly what you mean. My husband is the celiac in our family and he was diagnosed about 15 years ago, after having symptoms get progressively worse over about a 12 year period.

In the beginning, the first thing that bothered him was beer and pizza (a double whammy) But then a month later he would have a beer and pizza and get along fine.

To me, logic says it should bother you all the time, not just once in a while.

As my husband's undiagnozed celiac continued, he would cycle. When he first consulted a doctor about his symptoms, he would say "It just seems like I get the flu about every 6 weeks" Then as time progressed, it was every 4 weeks, then every 2 weeks, and finally - sick all the time. It wasn't until he was sick all the time that he finally got in his doctor's face and said "Look, there is something wrong with me, either find it or send me to someone who can". Thus the beginning of tests which finally led to celiac disease diagnosis after 12 years of suffering.

That is why this disease was so insideous for him. He would eat pancakes one day and get sick, and then eat them another day and be fine.

I don't know if this cycling was commonplace with other celiacs, but it certainly was for him.

Kay

Okay, don't get me wrong, I am happy that I haven't been feeling like complete crap these past few days, but it's really weird. I've been eating A LOT of gluten lately, and I only have little symptoms that come and go, and the big ones are not as bad anymore.

I was off gluten (well low gluten) for a few months, and then, I would feel amazing but then get completely HORRIBLY SICK out of nowhere!!!!! (Bad body aches, bad migrane, bad back aches, bad leg cramps, etc.) So anyway, for the past few weeks I decided to go on a COMPLETE gluten diet (for upcoming blood tests), gluten with every single meal! And even though I still have alternating constipation and diarreaha, and slight head aches, and slight leg cramps, and black and blue marks all over my legs, my back pains have mysteriously gone away!

So is it possible that my body has started to build up a "tolerance" to all of this? I mean, when I was on the low gluten diet, I would be fine for weeks and the BAM!!!!!!!!!  Out of nowhere, my body would be stuggling to do ANYTHING!

Anyway, if anyone knows what may be going on.......... I don't know if this is possible, or if my body is playing tricks on me, or if I am miraculously on a road back to health....? It's like, I CAN EAT GLUTEN, I CAN'T EAT GLUTEN, YES I CAN, NO I CAN'T..............I really seem crazy! ;)

<{POST_SNAPBACK}>

danikali Enthusiast
danikali
Posted
  • Author

Thank you so much! YES, that is exactly how I feel! Like I get the flu every 6 weeks or so! I mean, there are always little things, but it completely plays tricks on me!

The only thing is I'm wondering if the doctors will only be able to get a positive diagnosis by getting to the point of being sick all of the time! I'm going for my blood tests on Wednesday, (actually the doctor doesn't even know why I'm going there yet, it's a new GI), and I'm going to tell her I want the full Celiac Panel done.

But it's good to know that I still am on the right track, even if it seems like it's not always there. So thank you very much!

-Danielle

Rachel--24 Collaborator
Rachel--24
Posted

Your symptoms probably wouldnt be exactly the same everytime you eat gluten. Also sometimes reactions may occur quickly and other times reactions may show up a day or two later. Thats what happens with me anyways.

I never noticed any kind of pattern with my illness when I was eating gluten everyday. Somedays I could eat things and not be affected and another day I could eat the same thing and have immediate symptoms and end up in tears. It took me 2 years to even figure out my symptoms were food related and that was only because a dentist told me so. I tried messing around with my diet and couldnt figure anything out. I was losing lots of weight and decided to not mess around with my diet and let the doctors figure things out. I had no idea about gluten. I was eating tons of gluten trying to regain my weight but I only lost more and about 3 months later I was unable to get out of bed and had depression so bad I was suicidal...I felt about 90 yrs. old and I still had no idea about gluten. I think if symptoms were always obvious it wouldn't be such a hard disease to diagnose. Eventually it will take a toll on your body even if you're not feeling symptoms everytime you eat gluten.

danikali Enthusiast
danikali
Posted
  • Author

Thanks! This is really good to know because this past Saturday, I had tons of energy all of a sudden, and no pains at all, yet I ate gluten all day long! Sunday came and I got really bad leg cramps, but now today, I am fine again! A little tired, lost the energy from Sat. but I don't feel sick at all!

Anyway, I'm glad to know this. My finace was like, hey, maybe you can eat anything you want!!!!! And I was like, hmmm......maybe I can??

Archived

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

Go to topic listing

  • 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. asaT
      - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get...
    2. nanny marley
      - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me I tryed lol , another was to have another blood test after...
    3. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel. they offered me an endoscopic biopsy ...
    4. par18
      - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test...
    5. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748
    Muhammad
    Newest Member
    Muhammad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • asaT
      nothing has changed

      By asaT · Posted

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      IBS-D vs Celiac

      By nanny marley · Posted

      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Is it gluten?

      By par18 · Posted

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • 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.