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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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    • trents
      Okay, it does make sense to continue the gluten challenge as long as you are already in the middle of it. But what will change if you rule it out? I mean, you have concluded that whatever label you want to give the condition, many of your symptoms improved when you went gluten free. Am I correct in that? According to how I understand your posting, the only symptom that hasn't responded to gluten free eating is the bone demineralization. Did I misunderstand? And if you do test positive, what will you do different than you are doing now? You have already been doing for years the main thing you should be doing and that is eating gluten free. Concerning how long you should stay on the gluten challenge, how many weeks are you into it already?
    • WildFlower1
      I mean that I will be re-taking the celiac blood test again while I am currently on the gluten challenge right now, but not sure how many weeks more to keep going, to ensure a false negative does not happen. Thank you.
    • WildFlower1
      Thank you for your help, I am currently in the middle of the gluten challenge. A bit over 6 weeks in. At 4 weeks I got the celiac blood tests and that is when they were negative. So to rule out the false negative, since I’m in the middle of the gluten challenge right now and will never do this again, I wanted to continue consuming gluten to the point to make sure the blood tests are not a false negative - which I did not receive a firm answer for how many weeks total.    My issue is, with these blood tests the doctors say “you are not celiac” and rule it out completely as a potential cause of my issues, when the symptoms scream of it. I want to rule out this 30 year mystery for my own health since I’m in the middle of it right now. Thank you!
    • trents
      I am a male and had developed osteopenia by age 50 which is when I finally got dx with celiac disease. I am sure I had it for at least 13 years before that because it was then I developed idiopathic elevated liver enzymes. I now have a little scoliosis and pronounced kyphosis (upper spine curvature).  All of your symptoms scream of celiac disease, even if the testing you have had done does not. You may be an atypical celiac, meaning the disease is not manifesting itself in your gut but is attacking other body systems. There is such a thing as sero negative celiac disease. But you still have not given me a satisfactory answer to my question of why do you need a differential dx between celiac disease and NCGS when either one would call for complete abstinence from gluten, which you have already been practicing except for short periods when you were undergoing a gluten challenge. Why do you want to put a toxic substance into your body for weeks when, even if it did produce a positive test result for celiac disease, neither you or your doctors would do anything different? Regardless of what doctors are recommending to you, it is your body it is affecting not theirs and they don't seem to have given you any good justification for starting another gluten challenge. Where you live, are doctors kings or something?
    • WildFlower1
      Sorry to put it clearly, at 15, infertility started (tried to word it nicely) meaning menstruation stopped. Which is in correlation to celiac I mean. Thank you. 
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