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

Not Celiac - Will Gluten Intolerance Cause These Symptoms, Too?

JenC

Recommended Posts

JenC Apprentice
JenC
Posted

I recently had the genetic celiac test and the blood panel done, both of which came back negative. I'm fairly certain I'm at least gluten intolerant, though, and because of that and my autoimmune disease (Hashimoto's) I'm going to do a 3 month trial. My question is, I have so many of the symptoms I have seen associated with celiac. Brain fog, depression, anxiety, adhd-type symptoms, digestive issues, restless legs plague me. I'd almost hoped it was celiac, because then I had hope that going off gluten may alleviate these things for me. So are these things also associated with gluten intolerance? Is there hope here?

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

Celiac.com Sponsor (A8-M):


Coinkey Apprentice
Coinkey
Posted

Short answer: Yes, there is hope. Do the trial!

Long answer: I too, did not get positive tests for my symptoms. I saw remarkable improvements by first being an extremely poor student and not being able to buy more food and thus being stuck with what was around the house- rice and potatoes. Astonishingly, I felt a lot better. Then I got paid and ate some KD and was immediately sick again. I talked to my sister who also was gluten free and she guided me through the avoid list and gave some helpful tips. Through this forum and other online research and a negative blood test, I have been gluten free and HAPPY, JOYFUL, ECSTATIC etc for an entire year. (Bar some tummy trouble which has since been attributed to soy and milk)

Best advice in a nutshell found on this forum: Screw the tests- if you're feeling better without gluten- that's all that matters- your health and well-being.

mommida Enthusiast
mommida
Posted

The genetic test is not 98% accurate.

You could have fallen into the known 2% missed range.

Not all Celiac genes are known at this time.

& Every test done has at least a 30% error rate in human handling.

beachbirdie Contributor
beachbirdie
Posted

I recently had the genetic celiac test and the blood panel done, both of which came back negative. I'm fairly certain I'm at least gluten intolerant, though, and because of that and my autoimmune disease (Hashimoto's) I'm going to do a 3 month trial. My question is, I have so many of the symptoms I have seen associated with celiac. Brain fog, depression, anxiety, adhd-type symptoms, digestive issues, restless legs plague me. I'd almost hoped it was celiac, because then I had hope that going off gluten may alleviate these things for me. So are these things also associated with gluten intolerance? Is there hope here?

If you have Hashimoto's, it is a VERY good idea to be gluten free. There are studies showing a significant connection, one is discussed here at celiac.com. Open Original Shared Link showed how 3.4% of a group of study subjects with Hashimoto's were found to have celiac, while only .6% and .25% were found to have celiac in the control groups. That is significant. The latter study also showed that organ-specific (such as anti-thyroid) antibodies disappeared after 3-6 months on the gluten-free diet.

Those are very good arguments for a Hashi's patient to avoid gluten!

I have Hashimoto's, and one thing I've noticed is that I get a great deal of neck discomfort when I'm eating a lot of gluten. A weird sort of sore throat, plus an irritation I don't even know how to describe...kind of a vibrating/buzzing feeling, or like there is a nest of ants in where my gland is. And lots of joint pain, fluid retention, fatigue.

I'm making a choice for gluten-free after I do one more round of blood tests. I have one celiac gene, and it looks like I have at least two of my 4 kids with celiac or gluten-intolerance.

Best,

beachbirdie

gailc Newbie
gailc
Posted

They say I don't have it, I say I do. My decades of Lactose intolerance went away on the diet. I am just wonderful on the gluten-free diet.

I only wanted it to actually be Celiac because I'd heard some have their Lactose intolerance go away. Otherwise I don't want it to be that. In that matter wanting makes no difference, I have it or I don't.

I only care to be diagnosed if I really do have it, so they would put me on the PROPER SCHEDULE of testing for the associated diseases. They put me on a 5 year schedule for colonoscopies and tomorrow they do the 'small intestine barium drinking turning into a baseball bat in the intestines' test. Yeah, they found a polyp last week. I'll start pushing in about 4 years for another round of tests.

I have been researching for 4 months and I cannot find anywhere what Celiacs get vs what gluten intolerants get except for the vacili changes/nutrient problems/biopsies and blood tests and the rash.

I just want proper treatment.

gailc

JenC Apprentice
JenC
Posted
  • Author

Thanks for the replies, everyone. My daughter and I start our gluten-free trial Friday. I'm hopeful that my health will improve, as well as hers. Considering my Hashimoto's and the fact that I need to be gluten-free for that alone, it would be fantastic if some of my other issues are remedied, too, just for extra motivation. :)

gailc Newbie
gailc
Posted

Thanks for the replies, everyone. My daughter and I start our gluten-free trial Friday. I'm hopeful that my health will improve, as well as hers. Considering my Hashimoto's and the fact that I need to be gluten-free for that alone, it would be fantastic if some of my other issues are remedied, too, just for extra motivation. :)

Try eating lots of fresh fruits and vegetables. They will make you feel better even if you had no problems. Be sure to get some gluten-free bread because you will crave it.

Remember even french fries often have wheat on them. Learn the sneaky names for wheat and gluten like spelt, malt and dozens more.

Get some books from the library, search for lists of the sneaky names.

I hope the diet works very quickly for you as it did for me.

gailc

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • 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. Scott Adams
      0

      Gluten-Free Lemon Poppy Seed Shortbread

    2. cristiana
      - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

      Hi @KathyR37 and a very warm welcome here. I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana
    3. trents
      - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    4. Theresa2407
      - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

      thank you for your advice. I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated. I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    5. KathyR37
      - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and gloves when cooking for them. One huge problem...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,818
    • Most Online (within 30 mins)
      7,748
    sleuth
    Newest Member
    sleuth
    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

    • cristiana
      New here

      By cristiana · Posted

      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      New here

      By trents · Posted

      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      Probiotics

      By Theresa2407 · Posted

      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      New here

      By KathyR37 · Posted

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      New here

      By Scott Adams · Posted

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.