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

Feeling Like There Is Not Much Light At The End Of The Tunnel...


CR5442

Recommended Posts

IrishHeart Veteran

The other main point is for us all to hang together rather than try to create some kind of weird competition that splits us apart. If we can't try to understand and support each other and give each other some slack, who will??

Just to clarify, (although I can't speak for others) , but is not a "weird competition" or "lack of understanding or support" that prompted me to simply ask for clarification/proof re:some things you said. I am not being disrespectful or rude or non-supportive. Not at all. (I think many will say that I am always respectful and supportive. :) )

My aim is to make sure valid information is presented. That is, I believe, one of the goals of the forum.

Board Rule #5 states:

Any claims you make here should be based on legitimate sources, or be expressed as opinion, experience, or inquiry. You should remain on topic and be consistent with the theme of the forum as a whole.

Kind regards, IH

P.S. I see some folks are perhaps making light of the "IMHO" disclaimer I often use myself, but I am not taking umbrage. B)


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



Celiac.com Sponsor (A8-M):



  • Replies 60
  • Created
  • Last Reply
Skylark Collaborator

I know for myself, personally, that MSG is a major bugger. :blink: The peri-menopausal, hormone-related migraines, however, made me want to rip my own head off. :huh:

Please tell me they go away. I'm about to rip my own head off, only I'm too dizzy and brainfogged to find it. :blink:

What were we talking about? I forgot.

CR5442 Contributor

Please tell me they go away. I'm about to rip my own head off, only I'm too dizzy and brainfogged to find it. :blink:

What were we talking about? I forgot.

You guys are all making me laugh - I MUST be feeling better!!!

Yes, IH, the migraines do go away... well for me when I was drinking coffee (lots of coffee) and eating gluten I was having migraines that made me feel like i was having a stroke. The last one I had I had trouble moving my left arm and side of the body. I stopped drinking coffee straight away - haven't had a cup since. Then the only other migraine i had was the weekend before I gave up gluten. Interestingly it was what I call a 'sick' migraine. I.e. I felt appallingly sick, with aura etc. As soon as I got rid of the contents of my stomach (It was my 40th birthday and gluten made up a large part of the three day party we had!) I was fine. No migraine (touching wood here) since. If I'm dehydrated or feeling poorly from a virus sometimes i get the feeling like another one is going to come.

One of my first line defences for migraines became Magnesium and flushing Niacin... which as you know expands the capillaries to cause that flush effect. Got rid of quite a few of these before they took hold with this remedy. You should try it! But you absolutely have to catch it at Aura stage... otherwise it is too late. Lie down as soon as you have taken the Niacin too. I would start at 50mg and if after 20mins no flush then another 50mg.

IrishHeart Veteran

Please tell me they go away. I'm about to rip my own head off, only I'm too dizzy and brainfogged to find it. :blink:

What were we talking about? I forgot.

:lol:

Yes, honey---those perimenopausal doozies DO lighten up.Mine are gone. (having a total hysterectomy hurtled me through menopause like a rocket) :lol:

My migraines, which plagued me for about 15 years, were a combo of hormones, probably long-unDxed celiac, and Stress (oh, THAT again!) :rolleyes:

I had "life stuff" going on, much like Caroline (for me, it was multiple miscarriages, failed fertility treatments which involved more hormone disruption, chronic bone/joint pain, separation/divorce, moving, going for tenure, getting remarried, move again, Dad ill, crazy family drama blah blah blah-- all within a few years :blink: ) and that was the LIFE JUNK I was telling Caroline about that gets in our way.

My headaches often emerge from a combo of things, including

holding my shoulders up in a death-clench waaay around my ears (as if my neck has disappeared) The MT/PT has to pry them down from there :lol: and the sub-occipitals --(the muscles at the base of your skull?) are the major culprits. That--and clenching your JAW from stress. I have been working for a long time with a Massage therapist/nurse whose speciality is facial/head pain and she and I have written an article for patients explaining how stress, holding our bodies in a tight, clenched fashion in response to that stress, gluten or other food intolerances, red wine and other high histamine foods, and those hormones out of whack will provoke pain, especially from the neck up.

My secret? ICE PACKS right at the base of your skull (just lay on one covered with a towel). Those blood vessels are engorged and ICE, and then a warm bath, some soft music and slow, deep breathing will help alleviate the migraines. Don't laugh, but warming your feet or having someone gently rub them--and rub your hands--helps. I do not know why, it just does.

I highly recommend getting regular massages. It is not a frivolous luxury, it is therapeutic. I also do some gentle yoga or Tai Chi. Now that I can balance again (damn ataxia!) :blink: and use my muscles properly (damn muscle wasting!) it really helps! :)

Gluten (I call it my kryptonite <_< ) may have caused major havoc, but it can be reversed.

Hope you get relief soon!!

I used to say to hubs, "just kill me now" as I honestly thought my head would freakin explode. I was in the ER more than once with one of those whoppers, getting mega-doses of anti-inflammatory drugs intravenously. There is nothing worse than head pain. :ph34r:

Skylark Collaborator

You guys are all making me laugh - I MUST be feeling better!!!

Yes, IH, the migraines do go away... well for me when I was drinking coffee (lots of coffee) and eating gluten I was having migraines that made me feel like i was having a stroke. The last one I had I had trouble moving my left arm and side of the body. I stopped drinking coffee straight away - haven't had a cup since. Then the only other migraine i had was the weekend before I gave up gluten. Interestingly it was what I call a 'sick' migraine. I.e. I felt appallingly sick, with aura etc. As soon as I got rid of the contents of my stomach (It was my 40th birthday and gluten made up a large part of the three day party we had!) I was fine. No migraine (touching wood here) since. If I'm dehydrated or feeling poorly from a virus sometimes i get the feeling like another one is going to come.

One of my first line defences for migraines became Magnesium and flushing Niacin... which as you know expands the capillaries to cause that flush effect. Got rid of quite a few of these before they took hold with this remedy. You should try it! But you absolutely have to catch it at Aura stage... otherwise it is too late. Lie down as soon as you have taken the Niacin too. I would start at 50mg and if after 20mins no flush then another 50mg.

Glad we got you laughing! My Dr. told me to go off coffee. I'm tapering down and I'll be off caffeine *cry* by the end of this week. Dr. put me on riboflavin/magnesium to try and I'm lucky enough that Maxalt works if I catch the aura. I'll keep that in mind about the niacin but I don't get the flush so it might not work for me. I know I'm reacting to food triggers as well, because miso, red wine, chicken livers, and aged cheese have all zapped me. That probably means MSG and tyramine.

IH, I don't think mine are tension. Yours sound almost more like cluster headaches than migraine. Mine aren't that painful - it's more like having the flu. Nausea, malaise, can't think, dizzy, light-sensitive, and my head hurts. I'll subsist on a couple mouthfuls of white rice and broth because it's all I can tolerate. They've always been hormonal around my period, now that I'm perimenopausal all heck is breaking loose! Acupuncture is helping me too.

GFinDC Veteran

iMHO this will cheer you up:

The Celiac Song

YoloGx Rookie

iMHO this will cheer you up:

The Celiac Song

Nice! Thanks for sharing.

Bea


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

iMHO this will cheer you up:

The Celiac Song

:lol: :lol: :lol: :lol: :lol:

IrishHeart Veteran

IH, I don't think mine are tension. Yours sound almost more like cluster headaches than migraine. Mine aren't that painful - it's more like having the flu. Nausea, malaise, can't think, dizzy, light-sensitive, and my head hurts. I'll subsist on a couple mouthfuls of white rice and broth because it's all I can tolerate. They've always been hormonal around my period, now that I'm perimenopausal all heck is breaking loose! Acupuncture is helping me too.

The doc told me I had classic one-sided migraines, but they do not come regularly now. :)

When I do get one now, it is from muscular tension (my muscles took a huge hit from celiac) but I can sometimes get it under control. The hard part is the blurred vision, light sensitivity, nausea and wanting to hurl. My head bangs so hard, I want to curl up and die. UGH! I can't tolerate drugs, so that makes it very difficult. :(

The acu did not work for me, but I am happy it is helping you. :)

I hope they stop altogether for you!

IrishHeart Veteran

You guys are all making me laugh - I MUST be feeling better!!!

Laughter--always the best medicine! ;)

Take care!

IH

GFinDC Veteran

Hi everyone. Thank you all so much for giving your thoughts on this. It makes me feel so much brighter knowing that there is indeed light. Regarding diet and possible gluten CC. I am absolutely sure that my diet includes only the things that I tolerate. About half a year ago, when my symptoms were extremely bad, my acupuncturist did a pulse test on a lot of things I ate daily. There are only two things I really can't eat... gluten and coconut.

Sometimes I get a fast pulse after eating something so I stop eating, then after a few weeks go back and try again, and often the fast pulse doesn't happen again. This leads me to believe that it might not be food causing a reaction, perhaps just the state of my body at the time of eating... I might be going through a weak phase physically where healing has slowed, or i'm not getting enough nutrients, or am fighting off a virus or something.

.....

Thoughts are very welcome. Does anyone else feel that the holistic approach as worked for them, rather than looking at individual possible culprits of depression etc?

Hi Caroline,

The idea of pulse testing for food intolerances is something I am not so sure about. I think an elimination diet is a better way to go. My thinking is that pulse testing may not be 100% reliable, as most tests are not 100% reliable after all. There are so many different symptoms that people can get with food intolerances, that I am not sure all of them would show up as a pulse rate change first. Like joint pain, or a rash, or well, lots of them. I think it would be very interesting and worthwhile for studies to be done on this idea and also the idea of blood pressure and blood sugar changes as a way to detect food intolerances. It seems like a simple thing to test these kind of reactions but maybe it is too simple for our modern doctors to figure out. But an elimination diet does work and many people use elimination diets to find their food intolerances. I suggest if you haven't tried one that you do and maybe you will find some answers.

Hmm, dang it, I rambled around so much in this thread that I accidentally came back to the topic! :)

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. - knitty kitty replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Dried Chickpeas

    2. - trents replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

    3. - Scott Adams replied to ainsleydale1700's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Confused about HLA-DQ Celiac gene test result

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,438
    • Most Online (within 30 mins)
      7,748

    Thomasine
    Newest Member
    Thomasine
    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

    • knitty kitty
      Hello, @Aretaeus Cappadocia, My favorite source of B12 is liver.  😺 I react to nutritional yeast the same way as if I were glutened.  Casein, a protein in dairy, and nutritional yeast have protein segments that match certain antigenic protein segments in gluten.  The proteins in rice, corn (maize), and chicken meat have them as well.   Some people with Celiac might tolerate them without a problem, but I need to avoid them.  For those still having symptoms, cutting these out of our diet may improve symptoms. 
    • trents
      Welcome to the celiac.com community, @ainsleydale1700! First, it is very unlikely, given your genetic results, that you have celiac disease. But it is not a slam dunk. Second, there are some other reasons besides having celiac disease that your blood antibody testing was positive. There are some diseases, some medications and even (for some people) some foods (dairy, the protein "casein") that can cause elevated celiac blood antibody test scores. Usually, the other causes don't produce marginally high test scores and not super high ones. Having said that, by far, the most common reason for elevated tTG-IGA celiac antibody test scores (this is the most common test ordered by doctors when checking for celiac disease) is celiac disease itself. Please post back and list all celiac blood antibody tests that were done with their scores and with their reference ranges. Without the reference ranges for negative vs. positive we can't tell much because they vary from lab to lab. Third, and this is an terrible bum steer by your doc, for the biopsy results to be valid, you need to have been eating generous amounts of gluten up to the day of the procedure for several weeks.  Having said all that, it sounds most likely that you have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. The two share many common symptoms but NCGS is not autoimmune in nature and doesn't damage the lining of the small bowel. What symptoms do you have? Do you have any blood work that is out of norm like iron deficiency that would suggest celiac disease?
    • ainsleydale1700
    • Scott Adams
      HLA testing can definitely be confusing. Classic celiac disease risk is most strongly associated with having the full HLA-DQ2 or HLA-DQ8 heterodimer, which requires specific DQA1 and DQB1 genes working together. Your report shows you are negative for the common DQ2 and DQ8 combinations, but positive for DQB102, which is one component of the DQ2 pair. On its own, DQB102 does not usually form the full DQ2 molecule most strongly linked to celiac disease, which is likely why your doctor said you do not carry the typical “celiac genes.” However, genetics are only part of the picture. A negative gene test makes celiac disease much less likely, but not absolutely impossible in rare cases. More importantly, both antibody testing and biopsy are only reliable when someone is actively eating gluten; being gluten-free for four years before testing can cause both bloodwork and intestinal biopsy to appear falsely negative. Given your positive antibodies and ongoing symptoms, it may be reasonable to seek clarification from a gastroenterologist experienced in celiac disease about whether proper gluten exposure was done before testing and whether additional evaluation is needed.
    • Aretaeus Cappadocia
      I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
×
×
  • 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.