Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

By CR5442
in Coping with Celiac Disease

Recommended Posts

IrishHeart Veteran
IrishHeart
Posted

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
Skylark
Posted

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
CR5442
Posted
  • Author

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
IrishHeart
Posted

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
Skylark
Posted

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
GFinDC
Posted

iMHO this will cheer you up:

The Celiac Song

YoloGx Rookie
YoloGx
Posted

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
IrishHeart
Posted

iMHO this will cheer you up:

The Celiac Song

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

IrishHeart Veteran
IrishHeart
Posted

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
IrishHeart
Posted

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

Laughter--always the best medicine! ;)

Take care!

IH

GFinDC Veteran
GFinDC
Posted

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,209
    • Most Online (within 30 mins)
      7,748
    Ashley P.
    Newest Member
    Ashley P.
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • More2Learn
      Celiac Maybe a Possibility?

      By More2Learn · Posted

      Thanks, yes, I've gone back and forth.  There is a lot of autoimmune disease in my family, so primarily I was thinking a real diagnosis might be helpful for other family members -- especially as I have two young biological nephews.  I feel like I am at a crossroads, where if I'm going to test now would be the time, since I've been in a less-than-perfect eating period.  I'm either going to just going to use what I've learned in these last few months to purposely never cheat again (obviously there is the accidental glutening situations) or test first, and then do that.  I don't need an official diagnosis so much that if I'm doing well I'm going to sabotage that by then starting to eat gluten again. I'm so glad you said this.  Even from what I've read so far, it makes sense to me that this is a misconception.  But growing up with all kinds of allergies, I can see how, as for the general population it's just easier for everyone to simplify it down to a type of "allergy," people would assume this.  It's just how most people look at allergies and diets and gluten avoidance has been painted as both.  I even see it in my journey to date, when I say I want a gluten free selection at a restaurant and I am asked "is it an allergy?" and it is so much easier just to say yes (even if the answer is actually well, no, it's autoimmune).  Because the "yes" answer is the "this is serious" answer.
    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      I also have food particles left on toiet paper when i wipe and my stool is light yellow not absorbing fats. I urinate about 15 times a day and have very sticky snot,dry throat.
    • kopiq
      starting to heal, vitamin d deficiant but cannot tolerate vitamins. what to do? also multiple ongoing issues.

      By kopiq · Posted

      Hi all, I was diagnosed by blood work about 2 months ago and have since went on a strict gluten free diet. I have an endoscopy in January and the GI dr said nothing about staying on gluten for it; hes aware i went no gluten. starting to heal symptoms include: (this is huge) sensation coming back to genitals and when having a bowl movement. everything has been numb for a long time down there including lower belly button area. good size (not abnormal) bowel movements once a day or every two days. small dot size wart just fell off my finger that was there for years. have not broke out with a cold sore this winter (every winter prior for years i would develop a cold sore on my lip) Ongoing issues I don't sweat. not from my hands, or armpits or feet. I do not get butterflys in stomach. my hands have been so dry for years ive been using a crack cream as they crack and bleed very severely in the fall and winter.  (since going gluten free ive not used crack cream but they are still very very dry and chapped/flaky, no sweat or moisture in palms of hands at all. I dont crave food. i have no cravings at all, not for pizza, ice cream , nothing. my cravings are dead. smell of foods kinda make me hungry, but my stomach blocks it. pins needles in feet get weak legs standing up from sitting and dizzy, things almost turn black. i cannot tolerate veggies or vitamins. Iam vitamin D deficient according to my Dr and Ive tried vitamin D pills. they give me a massive migraine for 8 hours and upset my stomach. the heat from the direct sun make me extremely tired to the point of wanting to pass out. again i don't sweat. broccoli gives me a migraine headache as well. mushrooms, bell peppers burn my stomach. fruits burn my stomach, fats (peanut butter, any oil or fat from meats make me sick to my stomach for a couple hours or longer. salt and pepper burns my stomach. all these issues cause pain at my belly button area and expand to the rest of my upper stomach and sides the more i ingest through out the day. I currently eat bland basmati rice, chicken, pork chops (fat trim), boiled russet potatoes no skin for three meals a day. my snacks are gluten free ground buckwheat flour pancakes. (just water, no oil , salt, dairy.) how am i to get vitamins in my system if i cannot tolerate them in my stomach? i mentioned epidermal vitamin patchs but dr said no. why cant i stand the heat from the sun ? why cant i sweat? thanks for any info.                
    • trents
      Celiac Maybe a Possibility?

      By trents · Posted

      Because you have significantly reduced your gluten intake over a considerable amount of time, it is likely that you will test negative on the antibody tests. However, if the $112 for the Quest test is not a burden, it wouldn't hurt to try. It tests for total IGA (to ascertain if you are IGA deficient) and tTG-IGA. If total IGA is deficient, it can result in false negatives in other IGA tests. The tTG-IGA is the single most popular test ordered by physicians. The Quest test is not a complete celiac panel by any means (refer to the linked article above) but it might be a good place to start. Personally, I think you know enough to conclude that you need to get serious about avoiding gluten, whether you have celiac disease or NCGS. Human nature being what it is, however, many people seem to need an official diagnosis of celiac disease in order to stay on the bandwagon. Otherwise, they seem to rationalize cheating on the gluten-free diet. And there is this misconception out there that NCGS is inconvenient and uncomfortable but not harmful so it's okay to cheat. The more we learn about gluten-related disorders the more they seem to not fit into our neat little black and white categories. By the way, celiac disease is not a food allergy. It is classified as an autoimmune disorder.
    • More2Learn
      Celiac Maybe a Possibility?

      By More2Learn · Posted

      These responses are all extremely helpful, ty.  Really good reminder about omega 6.  I also know I'm low in zinc; I took the zinc test where I drank it on a spoon and couldn't taste it.  To that end, I try to eat a lot of oysters.  I do think it would be a good idea to get the blood test.  Two questions: 1-  Is there any reason you wouldn't recommend that I just buy and take a test like this as a first step? 2- I've been somewhat gluten free since ~Jan 2023 (technically organic, gluten free, soy free, light on dairy).  I eat a lot of meat, vegetables, rice -- a common breakfast for me is three eggs and a sausage link, and I can't remember the last time I had a sandwich or bread.  However, because in my mind I didn't think I had an allergy, and I more was doing gluten free to avoid artificially iron-enriched foods, I do make exceptions.  I'll eat breaded calamari.  When my Dad visits, I split mozzarella sticks with him because he loves them so much.  I'll eat the "gluten sensitive" items at a restaurant and if they asked, "is cross contamination ok?",  I always said yes.  Based on that, since I never probably fully eliminated gluten, but it was significantly reduced... is that good enough to take the blood test?  Because the pain in my side gets SO bad (really sometimes I can't function, and I absolutely thought I was dying), I am hesitant to do the gluten challenge.  Would it make sense to take the test, and if it's negative, then consider doing the challenge and seeing if I can deal with eating the bread every day? Thanks again!
×
×
  • Create New...