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Newbie- Waiting For Blood Tests Results


kellbeth

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kellbeth Newbie

Hi! This is my first time to ever post in a forum, hope i am doing it right.

I am the one who finally asked my doctor to do a Celiac panel after stranger and stranger symptoms over the last 3 years. I have no known family members with Ceiacs but I don't think any of them have ever been tested either. There is however lots of autoimune disease on my mom's side of the family, IBS type symptoms, and everyone has had their gall bladders out.

I was not aware of celiac disease until I kept getting these strange rashes last year and while googling my symptoms Dermatitis Herpetiformis kept coming up and looked very much like my rashes.

Some of the symptoms I have been experiencing.

I will try to make this a short as possible :)

Nausea-typically in the afternoon or evening

Dizziness

Joint pain-hands, knees, left shoulder, neck and hip

Fatigue- at times i feel like if i closed my eyes my haed would roll right off my shoulders

IrritabilityMild anxiety

Increased headachesIrregular bowel habbits- I go from normal to diarrea(or just very loose) to contipation. I have been noticing a need to go but then...nothing, just lots of cramping. A couple of years ago i would experience some bleeding when i went. I think it was do to a fissur(SP?)

Possible DH- last May i broke out back behind my left knee and then in several other locations over the next several months till it setled on my left elbow for 3 months. It returned this April on my elbow and then exploded at the end of May. Doctors didnt know what it was so they put me on steroids. Cleared it up but the day i stopped taking them left elbow flared back up and now i have ithchy blisters on my hands and right elbow as well.

Bloating and indegestion- started when the rashes started

Brain Fog

Innability to consentrate

Tingling and pins and needles-these symptoms started in January and come and go on both sides of my body.

Gallbladder pain-started a couple of months ago

I think that is about it :)

Is Celiacs or Gluten Sensitivity a reasonable thing to suspect?

I do plan to go Gluten free weather the results are positive or negative, just to see.


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    • RMJ
      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
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