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
      131,551
    • Most Online (within 30 mins)
      7,748
    Newest Member

    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.