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

Your Major Indicator

WifeMamaRN2be

Recommended Posts

WifeMamaRN2be Newbie
WifeMamaRN2be
Posted

Hi everyone : )

What was your major indicator that you might have Celiac (if there was one)? Since I have had symptoms for so long it has been in the back of my mind for a while that I could have it, but I haven't really done anything about it until now. I have had the symptoms but my major indicator was yesterday. I had pizza on Saturday night and yesteday I woke up fine. Within a couple hours, though, I felt shaky and my muscles hurt and were weak feeling. This has continued into today, but not as severe. I have not gone gluten free yet as I wanted to get tested first. Does this sound right? Could my body have had enough and wanted to tell me in a big way?

Thanks! : )

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Symptoms can change in intensity and presentation so one persons primary symptom may be different from another. My first indication was that I had 'poison ivy' for 12 months out of the year as a child, it was actually DH and about the same time I became very clumsy and off balance and developed learning problems. Doctors were clueless even after I developed daily D and eventually it got to the point where I was waking up nightly to be sick for 2 or 3 hours every night.

If you are going to get testing done do stay on gluten until the testing is finished and then no matter what the results give the diet a good strict try.

pain*in*my*gut Apprentice
pain*in*my*gut
Posted

Hi everyone : )

What was your major indicator that you might have Celiac (if there was one)? Since I have had symptoms for so long it has been in the back of my mind for a while that I could have it, but I haven't really done anything about it until now. I have had the symptoms but my major indicator was yesterday. I had pizza on Saturday night and yesteday I woke up fine. Within a couple hours, though, I felt shaky and my muscles hurt and were weak feeling. This has continued into today, but not as severe. I have not gone gluten free yet as I wanted to get tested first. Does this sound right? Could my body have had enough and wanted to tell me in a big way?

Thanks! : )

I started to notice that after eating one of my favorite meals, tomato soup and mozzarella cheese stuffed bread sticks, that I got HORRIBLY bloated and gassy (more so than "normal" bloated and gassy). I didn't really connect the dots until my positive blood test, but looking back, that was a big sign that I couldn't eat gluten.

Skylark Collaborator
Skylark
Posted

Chronic GI trouble here. I didn't know all the other stuff like canker sores and depression would also go away.

glutentheintolerant Rookie
glutentheintolerant
Posted

Well, it took a food store owner to tell me I needed a gluten-free diet it but I guess if I had known what I know now, these would have been my major indicators;

  • Tiredness after producing stool
  • Severe depression
  • Tiredness after eating sugary foods
  • Easily agitated on an empty stomach

Twinklestars Contributor
Twinklestars
Posted

Looking back, my major indicators something wasn't right was recurrent mouth ulcers (I'd get a new one every couple of weeks), extremely painful gas pains (I would catch myself not drawing a breath because it was so painful) and the bloating that goes along with it. But hindsight is also 20/20 and I think I can also attribute my intense growing pains in my legs and recurrent nightmares as a child to Celiac (or at least gluten intolerance).

alexsami Contributor
alexsami
Posted

diarrhea and horrible stools and gas :(

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

Celiac.com Sponsor (A8-M):


love2travel Mentor
love2travel
Posted

Nothing. I requested bloodwork as my sister was diagnosed with gluten intolerance. Boy, was I SHOCKED when I was told I have celiac! I'd always been the healthiest one in our family. However, in retrospect I do see a few things that are related such as arthritis, fibromyalgia (which I did not know I had until April) and all my miscarriages. :( And now I get dreadfully ill from dairy. :o

But no, I had zero indicators at the time.

beebs Enthusiast
beebs
Posted

Now that I look back I probably had symptoms my whole life, awful growing pains and a 'weak stomach' as a child and then when I was older around 21 I started getting this thing when I ate 'stodgy food' - which I know realise was wheat, where I would get this mucous thing happening so bad that I couldn't swallow and then all this mucous would just come pouring out of my mouth - so gross....diagnosed as allergy. I developed severe GERD and was on medication for it. And then the year before I went gluten free I suddenly started getting episodes of transient intersussecption (where the bowel telescopes on itself) that was terrifying and each time I thought I was going to dieI had it 4 times and the last time was when I had gone gluten free for 6 weeks and then ate heaps of gluten at a restaurant. I ended up so ill I ended up in hospital. And even though my mother has celiac it still never occurred to me thats what it could be until that last episode. Hindsight is great!

pricklypear1971 Community Regular
pricklypear1971
Posted

DH.

I had "lingering" thyroid symptoms - which turned out to be gluten- bit no one would have recognized it.

No one recognized the DH, either. Just figured that was the obvious choice when gluten-free helped.

WifeMamaRN2be Newbie
WifeMamaRN2be
Posted
  • Author

Nothing. I requested bloodwork as my sister was diagnosed with gluten intolerance. Boy, was I SHOCKED when I was told I have celiac! I'd always been the healthiest one in our family. However, in retrospect I do see a few things that are related such as arthritis, fibromyalgia (which I did not know I had until April) and all my miscarriages. :( And now I get dreadfully ill from dairy. :o

But no, I had zero indicators at the time.

Do you mind if I ask how your fibro was DX? And I hope you are feeling better! : )

love2travel Mentor
love2travel
Posted

Do you mind if I ask how your fibro was DX? And I hope you are feeling better! : )

Not at all! I have had severe chronic back (and a host of other body parts) pain (see my signature). So, I was finally referred to a chronic pain management specialist (18-month waiting list here in Canada) who did a bunch of testing, poking, prodding and determined that I definitely have FMS. When a total of 11/18 pressure points, when pressed, cause agonizing pain, a diagnosis is given (with other tests). Well, all my 18/18 points were excruciating. Then I told him I also have celiac disease. At that point he was even more adamant than before that there was no doubt I had FMS.

After being strictly gluten-free now for over six months there definitely has been ZERO reprieve from my FMS pain. In fact, it may be somewhat worse. I am hoping that as time goes on the FMS will dramatically improve - it must as I am in debilitating pain each and every day. Non stop. Once I was so desperate the ER doc gave me shots of something or the other just to enable me to sleep 24 hours so I could escape the dreadful pain. Of course with FMS comes nearly no sleep - it can be nearly impossible as it is so darned uncomfortable. So, when you do not sleep your muscles are not replenished and so goes the cycle. :(

I find the FMS FAR, FAR worse to deal with than celiac just because it is always there. At least with celiac you can forget about it for periods of time. But I will never stop hoping and praying that I will get better. :) I just MUST! :D

bartfull Rising Star
bartfull
Posted

Luv, I am so sorry to hear that you are in constant pain! I hope and pray it gets better for you soon! Kind of makes me feel like a crybaby for complaining about psoriasis and insomnia!

love2travel Mentor
love2travel
Posted

Luv, I am so sorry to hear that you are in constant pain! I hope and pray it gets better for you soon! Kind of makes me feel like a crybaby for complaining about psoriasis and insomnia!

Oh, thank you. It is really hard because it affects every moment of every day and every aspect of my life. I really took health for granted a few years ago. I feel double my age. :( It hurts just to put deoderant on - and just wearing clothes hurts but I sort of have no choice with that. ;)

I understand insomnia - it can make life pretty rough, too. When I hear of others suffering from insomnia my heart really goes out to them. There are nights I literally do not fall asleep and I pay severely for it. On average I sleep well once every 7-10 nights so usually I am running on very little. Did not fall asleep during sleep study, either.

We must continue to hang in there, though! :)

Archived

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

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


  • Member Statistics

    • Total Members
      132,561
    • Most Online (within 30 mins)
      7,748
    Valentino
    Newest Member
    Valentino
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      gluten-free Oatmeal

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • 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.