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Gluten 'sensitivity'

BarryC

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BarryC Collaborator
BarryC
Posted

Hi

I don't have full blown celiac my doctor reassures me, but personally I feel I do have gluten sensitivity. Why else would I get so bloated after eating anything made with flour? Also, feel much better physically and mentally when going gluten free-my 'adult A.D.D'. goes away.

I was trying to convince myself it was really 'carb sensitivity', as there is diabetes in my family, and sugar bloats me up too,  but a month of low carb dieting, did nothing for the bloating although I lost a little weight.

White bread is the worst for me, especially fast food buns.  Arby's are poison! Anyone else like me that feels that they are not full blown celiac but sensitive to certain gluten containing foods, especially bread?

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nvsmom Community Regular
nvsmom
Posted

Mmmmm, Arby's. I could go for a beef & cheese sandwich with those little seeds on the bun... Mmmmm.

 

I have celiac disease, but bread, especially on an empty stomach, caused me a lot of pain and bloating. Beer was the bloat king for me.

 

We have quite a few members around here with non-celiac gluten sensitity (NCGS).  To be honest, I'm surprised that we don't have more since it is so much more common that celiac disease (about 6% of the population vs <1%).  My guess is that many with NCGS don't take going gluten-free as seriously as those with celiac disease, and I blame society's attitude towards the gluten-free diet for that - it is just a big joke to most people.   :angry:

 

Are you gluten-free now? And feeling better?

 

Do you know what tests the doctor ran? Some doctors only run one test, it ends up barely negative and then the patient "coincidentally" 

 develops celiac disease a few years later.  :rolleyes:

 

Best wishes!

BlessedMommy Rising Star
BlessedMommy
Posted

I'm not really sure whether I'm celiac or not. I had serious complications while going through a gluten challenge in prep for celiac antibody testing and had to quit the gluten and just go gluten free, before I was able to get any tests.

 

Welcome to the boards! :)

Tricia7 Newbie
Tricia7
Posted

You say your doctor says you don't have celiac. Did you have a test run? If so which test? were you eating gluten before the test were done or had you already gone gluten free? Even if you were on gluten at the time of the test, it can give false negatives.

 

Some (many) doctors are not that knowledgeable about Celiac. So keep that in mind, a lot are trained to look at celiac is something you're born with thus found in babies and children, or primarily a disease that presents with constant diarrhea. If you have different symptoms than the stereotypical ones, many docs wont think you have celiac.

 

Either way, if you feel better off gluten and see an improvement in symptoms, that's wonderful!  It feels great to feel good :-)

elless Rookie
elless
Posted

My GI insisted there was nothing wrong except ibs despite all the indicators of celiac. He only had one test run , the ttg Iga, which came back negative. I pulled my Scope results and learned the 1 biopsy sample he took came back marsh 1. I then got my genetic tests back and tested positive on that. I went on a gluten free diet anyway, and have started feeling better. My Dr still thinks it's just ibs.

You know your body best. Educate yourself as much as possible. Get copies of all your tests and reports. Take charge of your own health.

I agree with Tricia, some doctors just don't know enough about celiac.

Georgia-guy Enthusiast
Georgia-guy
Posted

Elles, your doctor must have gone to med school with mine! Even though celiac put an explanation to pages of "idiopathic (insert primary complaint)", my doctor refused to even do 1 test for celiac because I have no family history of celiac (but I do have a family history of AI like crazy). I ended up paying a lab directly for the full panel which was (not to my surprise) positive for celiac. Right now I'm trying to track down the lab report from my GERD Dx endoscopy because it donned on me that the doc took biopsy samples of my esophagus, stomach, and you guessed it intestines because he saw "visible damage" on the scope. If I remember correctly from the bill I'm still paying on almost 2 years later it shows 15 samples total for biopsy. I swear if I see "marsh" anywhere on the report I'm gonna flip!

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