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kk moody

Celiac Or Gluten Sensitivity?

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Hi everyone. I'm new to the gluten-free lifestyle, and I have a couple questions.

I'm not really sure whether I have celiac disease or not. I've had two tests done that came back negative: a biopsy of my stomach and a blood test, both came back negative. However, I have a lot of conditions related to the immune system. I know you all aren't doctors, but I was wondering If you could give me your opinions.

Conditions I have: Turner's Mosaicism, Hashimoto's Thyroiditis, Hypothyroidism, Leaky Gut, Premature Ovarian Insuffiency, GERD, Vasovagal Syncope, insulin intolerance, and hypersensitivity to both physical touch and things I ingest... I'm having trouble finding the official name for those, my doctor said they go by different names, and I'm going to be going through some testing to see if I have epilepsy. Whew.

Even though my test results were negative, my cousin has similar issues and was diagnosed so I decided to try it.

When cut gluten out of my diet, I had a very rough withdrawal period. I was very nauseated, had migraines, almost passed out every time I stood up. I also got extremely sensitive to allergens in the air (i already am hyperanllergenic, but during this time i took as many antihistamines i could and I was still coughing 24/7.) since i've gotten over that, i've been extremely constipated without gluten it seems. Any advice for that?

I got over that, but then I slipped up and ate the wrong kind of bread (rudi's; i thought they were all gluten-free) when i noticed this i said, what the hey, and ate some pizza and wings with my family.)

Because of all of this, i've been really nauseated, have headaches, am puffy, and my joint are killing me. I also broke out in acne and got canker sores. I've also had gastrotitis.

Also, i recently had an endoscopy, and the weekend before it (it was scheduled on a monday) i actually went to the ER because I had such intense gastrotitis, it lasted for a week, got worse, was constant. I thought I had a kidney infection. Apparently it was pretty bad, the doctor took a biopsy and it was normal.

So my questions are, is it possible that I could still have celiacs? Is there anything that helps if you slip up and eat gluten? Thanks!

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I thought I might add some more symptoms:

Tingliness and dead numbness in limbs

Bloating

Night seizures (waiting to get confirmed)

Loss of smell

Brain fog

Blurry vision

Extreme hunger after eating

Alternating diarrhea/constipation (now just constipation)

Dark circles under eyes

My blood pressure runs low but I bleed for a long time after taking blood samples/ shots/ when cut. People always ask me if I'm on blood thinners

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Hi KK and Welcome.

 

There are over 300 symptoms associated with Celiac Disease.  See them here:  http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf

 

No one here can tell you if you have the Disease or not.  We can only compare our own issues with yours.  You could also have NCGI.  It never hurts to try the diet and see what happens.  If you feel better then it is a healthy choice to stay with the diet.  

 

Good luck with what ever you decide to do  :)

 

Colleen

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Blood work negative and biopsy negative pretty much means you do not have Celiac.  You could be sensitive to gluten without having celiac.  You also have a LOT of conditions that can cause problems so it could just be a combination of all of that.  Also, if eating gluten-free makes you feel better, by all means, do so!!

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If the endoscopic biopsy of your intestines (not the stomach) was negative, as were the blood tests, then I agree that you probably have non-celiac gluten sensitivity (NCGS).  There is a small chance that it is latent celiac (meaning early celiac disease) but that is usually defined by a positive blood test and negative biopsy.

 

It is possible, although not likely, that you have celiac disease if you did not have enough blood tests done or they did a poor job on the biopsy. What blood tests were done?  The full celiac disease blood panel includes tTG IgA, tTG IgG, DGP IgA, DGP IgG, EMA IgA, total serum IgA, and sometimes the older AGA IgA and AGA IgG tests.  Most of those tests have a sensitivity between 75 and 95% so some celiacs are missed but the chances of that go down if multiple tests were run.  Did they take many biopsy samples of your intestines?  6 or more is generally considered adequate.  And were you consuming gluten in the 2-3 months prior to testing?  If not, that can cause false negatives too.

 

NCGS is a pretty serious disease and is linked to the immune system although not (yet) considered to be an autoimmune disease.  The symptoms are virtually identical except for the mucosal/intestinal damage and rashes that can occur with celiac disease.  You need to be 100% gluten-free to treat it as well.  If you want to feel well, you'll need to be just as strict as someone with celiac disease.

 

The low blood pressure can be adrenal related, or even related to very low salt content in the diet.  I would discus it more with our doctor.

 

Best wishes. And welcome to the board.  :)

All that being said, with your health history, I wouldn't be surprised if it was celiac disease. As you know, AI diseases tend to run in groups... The good news is that the treatment for celiac disease is the same as that for those with NCGS. Identical.  The gluten-free diet.  :)

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