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
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    2. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    3. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
    4. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after eating them. If it happens a few times after eating the same foods- I cut back...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    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

    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.