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Are my symptoms caused by celiac.

Treys2k

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Treys2k Newbie
Treys2k
Posted

Hello everyone! I'm new and wanted to get some first hand experiences in symptoms since my GP is not knowledgeable at all. Iv done some research but like first hand experience. 

So Iv always had a weak stomach. For years Iv had nausea that's been pretty bad. Recently it has gotten worse. And Iv also had a lack of appitate. I also frequently get mind fog where I just feel uneasy maybe a little light headed and have to think harder and find it hard to concentrate. I also have alot of joint pain and cracking despite being 21. Standing 8 hours and leaning at work plus driving kills my knees. Iv also had issues with my shoulders and muscle pain and tightenss in my upper back. Also i find myself nit getting a good sleep lately waking up alot and have found myself for awhile watching tv in the middle of the day and passing out. Or being at work just but being able to stay awake. Also I still get " growing pains" in my legs which are terrible every now and then. I asked my GP for a blood test which I did today but she didn't even wanna do it because I don't have diarrhea. Do any of these symptoms sound like cealic? I'm kinda annoyed of hearing its anxiety. Which I admit i do have anxiety and panic attacks from time to time but some symptoms can't be just anxiety. I'm sorry this is probably all over the place But i appreciate anyone's help!

 

Iv also had a weird annoying pain that comes and goes in my lower right abdomen. Which at first was a UTI but the pain comes and goes months later even after a kidney scan. Also lots of burping and rumbling stomach. 

 

 

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Jmg Mentor
Jmg
Posted

Hello and welcome :)

Are your symptoms celiac related?  Maybe. They're all things which could be caused by celiac or gluten sensitivity.  It's a difficult condition to pin down because it can affect people in so many different ways. 

One thing which is not true is that you need to be experiencing diarrhea or other tummy troubles in order to have it. The majority of people don't present with these 'classic' symptoms. 

Oh and one thing celiac causes is anxiety! So you're quite right not to be fobbed off by that diagnosis. Stay advocating for your health and a proper explanation. 

The good news is that you've taken the test without eliminating gluten from your diet. Stay eating the gluten whilst you wait for the results. When you get them ask for a copy and post them here if you'd like more feedback.  If the blood tests are positive you should get a referral to a specialist and they will want to do more tests. So don't change your diet just yet!

Best of luck :)

 

PS. There's some more info and links in the forum faq above or in this post - just ignore the testing info which is a little out of date (the top two tests are no longer in use).

 

Lorjenn22 Apprentice
Lorjenn22
Posted

hello. you have described exactly me! i used to stand eight hours a day on my feet! i started hving joint pain in college, i am now almost 40. i hv other health issues as a baby but the similar symtoms you describe started showing up post college graduation. they are the fatique and fog, not sleeping. jpint pain n cracking- more of stiffness. if i were u i would ask for referreal to gasterial interology and they can administer a proper blood test. also have your doctor do a vitamines d n iron level test! if they are low, anemia is sign. i did not hv stomach issues. this is a disease effects everyone differently and fam docs are not up on this. i am no doctor but we hv very similar symptoms. also, it is hereditary. if there is anyone in your fam @ all who may hv it its very poss for you to hv it. this is how i found out. my dad was diagnosed then they tested me few months later bc i was dealing w other issues first and i have it!! also it can be brought on by stress. i hv no idea how but more one person has said that! i seriously would ask to go to gastrial interology. you dont hv hv stomach pains or diarria go there. they diagnose more effectively then fam doc. by the way i received routine blood work for years bc of anemia and nobody thought celiacs till my dad was diagnosed. hope this helps u n u get in w right people. also do not go gluten-free before test bc that affect results! best of luck!! the symptoms are real. i hope u get answers sooner then i did!!

Lorjenn22 Apprentice
Lorjenn22
Posted

ps if u live in pa i can reccend specialist for u

Treys2k Newbie
Treys2k
Posted
  • Author
On 9/30/2017 at 4:19 AM, Jmg said:

Hello and welcome :)

Are your symptoms celiac related?  Maybe. They're all things which could be caused by celiac or gluten sensitivity.  It's a difficult condition to pin down because it can affect people in so many different ways. 

One thing which is not true is that you need to be experiencing diarrhea or other tummy troubles in order to have it. The majority of people don't present with these 'classic' symptoms. 

Oh and one thing celiac causes is anxiety! So you're quite right not to be fobbed off by that diagnosis. Stay advocating for your health and a proper explanation. 

The good news is that you've taken the test without eliminating gluten from your diet. Stay eating the gluten whilst you wait for the results. When you get them ask for a copy and post them here if you'd like more feedback.  If the blood tests are positive you should get a referral to a specialist and they will want to do more tests. So don't change your diet just yet!

Best of luck :)

 

PS. There's some more info and links in the forum faq above or in this post - just ignore the testing info which is a little out of date (the top two tests are no longer in use).

 

So I had my test result read to me over the phone today from a medical assistant she just said everything was fine and that I was a 2 and if it was between 1 and 3 it was fine? That was the only info she gave me when I asked about my test? Any idea what that means? Should there be more info on the test? Im not even sure what test they preformmed or anything 

cyclinglady Grand Master
cyclinglady
Posted
47 minutes ago, Treys2k said:

So I had my test result read to me over the phone today from a medical assistant she just said everything was fine and that I was a 2 and if it was between 1 and 3 it was fine? That was the only info she gave me when I asked about my test? Any idea what that means? Should there be more info on the test? Im not even sure what test they preformmed or anything 

Who is the customer here?  You have a RIGHT to your medical records. It is in your best interest to get and obtain all medical records (including lab results).  

Chances are your doctor ordered the very good (but does not catch all celiacs), TTG.  This is the preferred test because of cost.  If you could only choose one, then this would be it.  But, a negative does not rule out celiac disease.  If you seriously think you have celiac disease, ask for additional testing.  

Open Original Shared Link

Honestly, you can not determine celiac disease based on symptoms.  Why?  Because illness symptoms tend to overlap.  

Victoria1234 Experienced
Victoria1234
Posted
1 hour ago, Treys2k said:

So I had my test result read to me over the phone today from a medical assistant she just said everything was fine and that I was a 2 and if it was between 1 and 3 it was fine? That was the only info she gave me when I asked about my test? Any idea what that means? Should there be more info on the test? Im not even sure what test they preformmed or anything 

Get ALL the test results and post them here. The names, values and ranges. We can help you read them.

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      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least NCGS.   Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.      
    • Scott Adams
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    • Jack Common
      How many grams is there in one slice of wheat bread?

      By Jack Common · Posted

      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
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