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

JenC

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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?

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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

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      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

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    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

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    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
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