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Describe Your Celiac Symptoms...


Britt26

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Britt26 Rookie

I am trying to determine if I could have Celiac Disease. I have had blood tests done (all were negative) and I may have an endoscopy done next week after my Gastro appt. I have had "IBS" for 8 1/2 years now and it has just gotten progressively worse; constant diarrhea, abdominal pain and cramping, gas, etc. Recently I was diagnosed with Hashimoto's thyroiditis, another type of autoimmune disease. Given the fact that AD sometimes run together, I wonder if my IBS is truly undiagnosed Celiac's?!?! I would give anything to live a normal life again and to be able to leave the house without taking nauseating anti-diarrheals.

Before I cut out gluten from my diet (which I won't do b/f my endo) I want to see what symptoms those of you with diagnosed Celiac Disease suffered with b/f going gluten free. Thank you to all willing to share!


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arened Rookie

My symptoms were GI upset (painful bloating, tons of gas, frequent D), nausea and occasional vomiting, swelling of my face/eyelids/hands in morning, daily headaches, high anxiety after meals (I was pleasantly surprised when that went away), anemia (leading to Restless Legs Syndrome). I only recently went gluten-free but almost all of these symptoms are completely gone. I hope this helps, good luck!

iamgf Newbie

I just sent this list to a friend who asked about my symptoms. Reading through it I realized I had forgotten a few symptoms, but I think you get the gist.

Although our list of symptoms might have similarities, remember that no two Celiacs will present with the same list of symptoms, and some have no symptoms at all.

Is your doctor checking for IgA deficiency? Total IgA should be part of a complete Celiac panel, but different labs offer different types of tests. Not to mention different skill levels in interrupting the tests.

At Diagnosis (Sept 2004):

  • chronic abdominal pain on right side
  • constant bloating and abdominal distention
  • gas
  • intense gas pain that was chronic and worsened after eating (the higher fiber the food the more intense the pain)
  • nausea (just raising a spoon to my mouth would trigger the nausea)
  • dizziness
  • chronic joint, muscle pain & weakness
  • chronic fatigue
  • insomnia
  • mood swings and anxiety
  • chronic headaches
  • problems with memory and brain fog
  • lactose intolerance
  • constipation and diarrhea (everyday was something different)

Chronic abdominal pain on right side & constant bloating and abdominal distention:
  • Within 2 weeks of going gluten-free these symptoms went away

Gas pain, gas, nausea and dizziness:

  • Slowly improved over the course of about 6-months ...
    • But, it would come right back if I ate a serving of high fiber foods like broccoli, apples, salads and popcorn.
    • Not being able to tolerate high fiber foods took several years to improve

Mood swings and anxiety, chronic headaches, problems with memory and brain fog, lactose intolerance, constipation and diarrhea:

  • Somewhere between a year and 18-months, I had notable improvement in these areas
  • The lactose intolerance did go away, but even lactose free products (i.e. whey isolate) give me headaches so I finally admitted that I need to just be dairy-free, and I feel much better.
Chronic joint, muscle pain & weakness, chronic fatigue, insomnia:
  • These actually got worse after going gluten-free but within 2-years into it I was experiencing relief from these issues. I couldn't believe how amazing I felt. It really sunk in that had I been sick for a very long time, because I never before lived without pain. And now I do. : )

Head & hand tremors surfaced shortly after going gluten-free.

  • The more tired I was the worse they were.
  • The tremors improved as my chronic fatigue improved.

Hope this is helpful.

sb2178 Enthusiast

diarrhea, acid reflux, anemia/iron deficiency, low D and B-12, low magnesium (sleep issues, muscle pain/twitches), abdominal pain, joint pain, barely noticeable bloating and gas (noticed once it was gone)...

at its worst: dizziness/fainting, weight loss, bruising, bloody noses, major fatigue (not leaving the apartment sort of fatigue)

cassP Contributor

diarrhea, acid reflux, anemia/iron deficiency, low D and B-12, low magnesium (sleep issues, muscle pain/twitches), abdominal pain, joint pain, barely noticeable bloating and gas (noticed once it was gone)...

at its worst: dizziness/fainting, weight loss, bruising, bloody noses, major fatigue (not leaving the apartment sort of fatigue)

is bloody noses a symptom that can be associated with celiac?? id really love to know.. i havent had one in YEARS- but when i was a kid, i had them ALL THE TIME!!!!!! it was RIDICULOUS.... it seemed to be on a regular basis.. total routine. it was no surprise to my family when "oh cass has got another bloody nose..."

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    • Scott Adams
      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
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