Jump to content
  • 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):

Celiac Or Not? So Confused!


trola2

Recommended Posts

trola2 Newbie

I was recently diagnosed with Hashimoto's (an autoimmune disease) and my endocrinologist says it frequently goes hand in hand with celiac. My celiac blood test was negative. But, I had chronic diarrhea and some vitamin deficiency. So, my doc suggested I go gluten free for 30 days.

After about 2 days of being gluten-free the diarrhea stopped and I felt better. But then I'd have occasional bouts of it and I'd tried to figure out if/where I got gluten.

So, after about 45 days I can't tell if gluten is really the issue or not. And I'm so confused. I don't know if it really is gluten causing my issues. Some days I eat gluten and my gut is fine. Other days I don't eat gluten and I have troubles again.

Has anyone experienced anything like this? Suggestions??

Thanks!


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



Celiac.com Sponsor (A8-M):



cassP Contributor

I was recently diagnosed with Hashimoto's (an autoimmune disease) and my endocrinologist says it frequently goes hand in hand with celiac. My celiac blood test was negative. But, I had chronic diarrhea and some vitamin deficiency. So, my doc suggested I go gluten free for 30 days.

After about 2 days of being gluten-free the diarrhea stopped and I felt better. But then I'd have occasional bouts of it and I'd tried to figure out if/where I got gluten.

So, after about 45 days I can't tell if gluten is really the issue or not. And I'm so confused. I don't know if it really is gluten causing my issues. Some days I eat gluten and my gut is fine. Other days I don't eat gluten and I have troubles again.

Has anyone experienced anything like this? Suggestions??

Thanks!

woww... kudos to your endo for knowing the sometimes link.

if it helps u to understand at all: gluten intolerance and celiac is not the same thing as an allergy. sometimes you may notice the negative effects on the same day- and other days you may not... so you cant always judge your reactions to gluten... if you have a problem- the gluten is activating your antibodies which then cause autoimmune damage or inflammation... but that is all inside of you- and you may not always have symptoms..

but... it probably would have been better for your doc to do a celiac panel on u- rather than to 1st try the diet. if you're gluten free- a test may not be accurate.

even if you didnt have celiac or never knew- i hope you DO know tho- that gluten can really aggravate those Hashimoto's antibodies.

Takala Enthusiast

The reaction to gluten, if that is your problem, is not straightforward and immediate in all people. It varies. If you have been off of it for a long time, and then accidentally get glutenned, you also may become acutely more sensitive or at least aware of what it feels like. Also, and this hasn't been discussed much, I think certain medications, smoking, and alcohol are blocking how people can feel their reactions.

A month off of it is not that long. And if you didn't somehow cross contaminate yourself that month, it would almost be a miracle, because it takes time to figure out where are the hidden gluten is. Teflon, tupperware, toasters.... lipsticks, hand lotions, hairsprays - pet foods if your pet drools or licks you - there are a lot of ways that gluten can be lurking.

Keep in mind that chronic D is not normal, nor is vitamin deficiency, nor your thyroid having auto immune problems.

If I were you, I would consider perhaps eliminating soy (that is the 2nd big thing that tends to mess up celiacs, gluten intolerants, and thyroid people) as well, and at least dairy lactose if not both lactose and casein (milk sugar and milk protein) in addition to gluten, and continue with the diet. Eat as simply as possible, keeping a food diary, and introducing new things only when you are sure the old ones don't bother you. You may also be reacting to one of the common ingredients in commercial gluten free foods, so it takes a bit of time to get to where you have no problems.

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 ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Iron loss and potential celiac.

    2. - Joseph01 replied to bethmon's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      We Keep Getting Glutened With Vegetable Oil

    3. - ThomasA55 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Iron loss and potential celiac.

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

      Edy's and Dreyer's ice cream

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

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442

    Joseph01
    Newest Member
    Joseph01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • ThomasA55
    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
    • Joseph01
      This is way past due for your post.  I have Celiac and have been recovering for more than a year.  Doing well.  Used Essential oil to day to fry some chicken.  Read the label all good.  Then ate some chicken.  Here comes the gluten reaction.  I haven't had a gluten reaction since year.  I am angry.   I have been so careful with this crap and don't wan't any set backs!!!!! Good luck to you with your post.   Celiac is HELL!
    • ThomasA55
      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary intake of iron was pretty steady (mostly in the form of red meat). I did carnivore (therby eliminating gluten) for a bit after the second test and felt improvements in my joints and digestion. I still consume gluten occasionally socially, for religious reasons, and through cross contamination/food sharing. For these reasons, I would need to know if I had it, because although my lifestyle is low gluten its not at the strict level it should be if it turned out I was celiac. I will get a gene test first and hope I don't have DQ2.5,DQ2.2, or DQ8, but if I had any combination of those do you guys think I need proper screening through a gluten challenge / blood test? Other context. From 2024-2025, my b12 stayed about the same in the mid 600s folate went up slightly, but I heard it takes longer for celiac to affect the absorption of these. ANA negative, CRP low, ESR low.  I don't know how much noise exists around the saturation and ferritin, but it caught my eye and Celiac seemed like a possibility. I'm under no illusion that it is probable that I have celiac, only that it may be worth screening given my overall profile.   
    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
×
×
  • Create New...