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Celiac Or Not Celiac?

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Smitten Rookie
Smitten
Posted

I need help. I'm not sure what do do. My mom, sister, niece, uncle and cousin have been dx'd with Celiac. I have symtoms. My blood tests all came back negative but my endo biopsy came back that my villi were blunt. So, it suggest that I have it. My doctor is calling me back today to see what he wants me to do next. Anyone else out there that has been in this same siutation? Any suggestions will help! :)

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StrongerToday Enthusiast
StrongerToday
Posted

Are you doing a gluten-free diet? Is it helping?

mamaw Community Regular
mamaw
Posted

You didn't say if you are sick in any way? If it were me I would do the diet and see how I felt. You know some never have any outward issues.Maybe the gene testing would also help you decide and the blood work if you haven't done that yet.

good luck

mamaw

Sorry I reread and see that you already did the blood test. I've been having terrible brain fog lately...

mamaw

Smitten Rookie
Smitten
Posted
  • Author

I haven't started because I wanted to see how the results came back with first. I don't want to start if I don't know if I actually have it..... but may have to anyway to see if it makes a difference.

I do have bouts of diarrhea, hypothyroidism and have scaly, itchy patches all over my lower legs. I hate to admit that!!

julie5914 Contributor
julie5914
Posted

Interesting that your blood work would be normal and the biopsy abnormal. I would want to know what they tested in bloodwork, i.e., did they do the full panel. I had very pos. bloodwork, no endoscopy. My sister had inconclusive bloodwork and she only knows that they said the endoscopy saw that her intestines were inflamed. They never said celiac. So she is still on gluten. Let us know what your doc suggests.

Smitten Rookie
Smitten
Posted
  • Author

I believe they did an TTG, IGA, IGG & Endom??? antibody.......

key Contributor
key
Posted

If your villi are blunted, it sounds like you may definitely have celiac. Especially with the family history. Go to a dermatologist and have a biopsy of the rash on your legs. If you have it you should definitely stay gluten free. I am sure you would be happy to not have the rash and thyroid problems are very common with celiac.

THat is interesting that your blood tests were negative.

Monica

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      Shingles - Could It Be Related to Gluten/ Celiac

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      You might try Heallix.  It's a silver solution with fulvic acid. I just put the solution on with a cotton ball.  It seemed to stop the nerve pain. Again,  not in your eyes or ears.   Go to heallix.com to read more about it and decide for yourself Also,  I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out. 
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      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
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      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
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      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
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