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

Is Sudden Onset Possible?


tricky

Recommended Posts

tricky Newbie

some details about myself:

female, 24, type 1 diabetes since march 2004

1+ year ago blood test for celiac negative after i went to a GI for indigestion/abdominal pain.

the pain eventually stopped bothering me at that time. he prescribed nexium and a reglan, which i no longer take.

i have extremely bad pms, the kind that renders me mostly useless, and extremely irritable and unapproachable. i've been this way since starting insulin in sept 2004.

suffered with depression for many years, have been on and off anti-ds, prefer being off of them because i'm unfortunately really sensitive to having strong side effects.

about two weeks ago i started feeling uncomfortable in my gut. like a weakness almost- a slight pain, something was off. but i had no change in bowel movements, if anything, perhaps a little bit constipated. i wasn't, and still am not nauseous. this past sunday the pain became much worse, i feel very uncomfortable. my stomach/instestines feel a lot of cramping and am having more gas than usual. this pain is about a 6 on the pain scale. on tuesday, the pain became very very prominent and got worse as i ate. it lasts all day long.

this is what i'm wondering, does a gluten intolerance/celiac have a sudden onset like this, and when you guys feel pain/cramping/overall discomfort, is it a constant pain?

i went to the ER last night and spent 10 hours getting tests done. extensive blood work, (turns out my potassium was a little low) urine sample, an ultrasound and a CAT scan. everything came up negative. (no gall bladder problem, not appendicitis, etc) they let me go with a prescription for vicodin (!) which to me is crazy and i don't plan on filling. i left the ER with the same pain that i went in with, even though i hadn't eaten for 14 hours or so at that point. is that a symptom of a gluten problem? because after 14+ hours hasn't all the food left your body?

when i got home this morning, i ate some brown rice fried with egg and some crumbled bacon, i figured, let me try something gluten-free and see how i feel. i went right to bed at 11am and just woke up a little while ago at 4pm! i was exhausted. my stomach feels "better" as in, the pain is much less right now.

i am just looking for some answers. i almost wanted it to be appendicitis just so i knew i would have an explanation and would feel some relief.

i guess all i'm looking for is a little insight, wondering if my symptoms might possibly be a gluten problem. thank you all in advance for helping me. i have an appointment with a GI in about 10 days- believe me, i'm trying to get in sooner, no way i can live with this pain for that long...

thank you :)

sarah


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



Celiac.com Sponsor (A8-M):



~alex~ Explorer

Hi Sarah,

Yes, it can definitely come on quickly. I would say mine came on over about a 2-3 week period where I went from no symptoms to constant sickness and being unable to leave the house. Depression and other mental/emotional issues can also be symptoms of celiac disease.

Having type 1 diabetes makes you more at risk for Celiac than the general population. Definitely get tested and if your tests come out negative, you could go gluten-free anyway while you keep searching and getting tests to make sure it's not anything else. You may find that you feel better off gluten even if your results turn out negative -- no test can be 100% accurate. If you want to be tested, don't go gluten-free until after the tests because that could invalidate the results.

ravenwoodglass Mentor

Yes it can, although it sounds like you have had some indications for a while. Up to 30% of us show up negative on blood work. For some of us doing the diet and the results we see are the best indications of whether we need to be gluten free. Many of us have unexpected effects from the psychotropic drugs they throw at us but the diet can negate the need for any of them.

  • 1 year later...
K.Darling Rookie

some details about myself:

female, 24, type 1 diabetes since march 2004

1+ year ago blood test for celiac negative after i went to a GI for indigestion/abdominal pain.

the pain eventually stopped bothering me at that time. he prescribed nexium and a reglan, which i no longer take.

i have extremely bad pms, the kind that renders me mostly useless, and extremely irritable and unapproachable. i've been this way since starting insulin in sept 2004.

suffered with depression for many years, have been on and off anti-ds, prefer being off of them because i'm unfortunately really sensitive to having strong side effects.

about two weeks ago i started feeling uncomfortable in my gut. like a weakness almost- a slight pain, something was off. but i had no change in bowel movements, if anything, perhaps a little bit constipated. i wasn't, and still am not nauseous. this past sunday the pain became much worse, i feel very uncomfortable. my stomach/instestines feel a lot of cramping and am having more gas than usual. this pain is about a 6 on the pain scale. on tuesday, the pain became very very prominent and got worse as i ate. it lasts all day long.

this is what i'm wondering, does a gluten intolerance/celiac have a sudden onset like this, and when you guys feel pain/cramping/overall discomfort, is it a constant pain?

i went to the ER last night and spent 10 hours getting tests done. extensive blood work, (turns out my potassium was a little low) urine sample, an ultrasound and a CAT scan. everything came up negative. (no gall bladder problem, not appendicitis, etc) they let me go with a prescription for vicodin (!) which to me is crazy and i don't plan on filling. i left the ER with the same pain that i went in with, even though i hadn't eaten for 14 hours or so at that point. is that a symptom of a gluten problem? because after 14+ hours hasn't all the food left your body?

when i got home this morning, i ate some brown rice fried with egg and some crumbled bacon, i figured, let me try something gluten-free and see how i feel. i went right to bed at 11am and just woke up a little while ago at 4pm! i was exhausted. my stomach feels "better" as in, the pain is much less right now.

i am just looking for some answers. i almost wanted it to be appendicitis just so i knew i would have an explanation and would feel some relief.

i guess all i'm looking for is a little insight, wondering if my symptoms might possibly be a gluten problem. thank you all in advance for helping me. i have an appointment with a GI in about 10 days- believe me, i'm trying to get in sooner, no way i can live with this pain for that long...

thank you :)

sarah

see an allergist! my mom is type one and had the same gi phenomenon a normal wheat panel wont show up it has to be extensive, i go to the doctor in the morning and im hoping for answers

ksangie Rookie

some details about myself:

female, 24, type 1 diabetes since march 2004

1+ year ago blood test for celiac negative after i went to a GI for indigestion/abdominal pain.

the pain eventually stopped bothering me at that time. he prescribed nexium and a reglan, which i no longer take.

i have extremely bad pms, the kind that renders me mostly useless, and extremely irritable and unapproachable. i've been this way since starting insulin in sept 2004.

suffered with depression for many years, have been on and off anti-ds, prefer being off of them because i'm unfortunately really sensitive to having strong side effects.

about two weeks ago i started feeling uncomfortable in my gut. like a weakness almost- a slight pain, something was off. but i had no change in bowel movements, if anything, perhaps a little bit constipated. i wasn't, and still am not nauseous. this past sunday the pain became much worse, i feel very uncomfortable. my stomach/instestines feel a lot of cramping and am having more gas than usual. this pain is about a 6 on the pain scale. on tuesday, the pain became very very prominent and got worse as i ate. it lasts all day long.

this is what i'm wondering, does a gluten intolerance/celiac have a sudden onset like this, and when you guys feel pain/cramping/overall discomfort, is it a constant pain?

i went to the ER last night and spent 10 hours getting tests done. extensive blood work, (turns out my potassium was a little low) urine sample, an ultrasound and a CAT scan. everything came up negative. (no gall bladder problem, not appendicitis, etc) they let me go with a prescription for vicodin (!) which to me is crazy and i don't plan on filling. i left the ER with the same pain that i went in with, even though i hadn't eaten for 14 hours or so at that point. is that a symptom of a gluten problem? because after 14+ hours hasn't all the food left your body?

when i got home this morning, i ate some brown rice fried with egg and some crumbled bacon, i figured, let me try something gluten-free and see how i feel. i went right to bed at 11am and just woke up a little while ago at 4pm! i was exhausted. my stomach feels "better" as in, the pain is much less right now.

i am just looking for some answers. i almost wanted it to be appendicitis just so i knew i would have an explanation and would feel some relief.

i guess all i'm looking for is a little insight, wondering if my symptoms might possibly be a gluten problem. thank you all in advance for helping me. i have an appointment with a GI in about 10 days- believe me, i'm trying to get in sooner, no way i can live with this pain for that long...

thank you :)

sarah

Your story sounds so much like mine except I don't have Type 1 diabetes. I've had previous tests that showed no hint of celiac, so they said I had IBS.

I ended up in the ER about a month ago with abdominal pain and bloating. All the tests came out negative. Leading into it though I had joint pain, so none of it seemed to fit together. I was basically called a hypochondriac by my PCP, so I got a new one. First (and only) test he ran was a celiac panel. My IGG is higher than could be measured, my IGA lower than could be measured and EMA (due to the low IGA) was negative. Due to these results I was sent to a GI (took a couple of weeks to get in) I have my biopsy on Friday. They gave me pain meds at the hospital too. I've been taking about one every other night. Of course I have joint pain on top of the level 6-8 abdominal pain. I've survived the pain for nearly a month, so believe me, it's possible. Not much fun, but possible, especially if there seems to be an answer in store.

I hope your GI appointment goes well. Keep us updated.

Angie

OptimisticMom42 Apprentice

For me the pain is about a 4 until it shoots down my left leg, then it's higher. It can take up to three days (with miralax) to a week to get my system cleaned out and working again. Then my stomach feel like I've been doing sit ups.

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. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    3. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

    4. - Scott Adams commented on knitty kitty's blog entry in Thiamine Thiamine Thiamine
      1

      About Celiac Remission

    5. - Scott Adams replied to TheDHhurts's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      need help understanding testing result for Naked Nutrition Creatine please

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

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748

    Atl222
    Newest Member
    Atl222
    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

    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Scott Adams
      Gluten testing is normally reported in ppm (parts per million), which is equivalent to mg/kg, not micrograms by itself. A result of <0.025 mcg only becomes meaningful if you know the sample size tested (for example, mcg per gram or per kg). If that value represents <0.025 mcg per gram, that would equal <25 ppm, which is above the gluten-free threshold; if it’s <0.025 mcg per kilogram, it would be extremely low and well within GF limits. Without the denominator, the result is incomplete. It’s reasonable to follow up with the company and ask them to confirm the result in ppm using a validated method (like ELISA R5)—that’s the standard used to assess gluten safety.
    • Scott Adams
      Medication sensitivity is very real for many people with celiac and other autoimmune conditions, and it’s frustrating when that’s brushed off. Even when a medication is technically gluten-free, fillers, dose changes, or how your nervous system reacts—especially with things like gabapentin—can cause paradoxical effects like feeling wired but exhausted. The fact that it helped bloating suggests it may be affecting gut–nerve signaling, which makes sense in the context of SIBO, but that doesn’t mean the side effects should be ignored. You’re carrying a heavy load right now with ongoing skin, eye, and neurological uncertainty, and living in that kind of limbo is exhausting on its own. It’s understandable to feel overwhelmed and discouraged when systems and providers don’t meet you where you are—your experience is valid, and continuing to advocate for yourself, even when it’s hard, really does matter. You can search this site for 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/   
×
×
  • 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.