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EndoAbi

Can you have celiac symptoms even when gluten free?

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Hello,

I dont know if this is the correct way to post and get replies I hope it is if not sorry ? I'll start from the beginning a year ago I fell ill and couldnt shake off the nausea I went to the doctor they thought I was bulimic because I'd lost so much weight they did a celiac and hpolyri test they both came back negative so I was diagnosed with ibs and anxiety ? Anyway through the years I kept cutting out gluten on and off but not bothering with cross contamination because it made me feel less nauseous ? But I still had stomach pain ?So about 4 months ago I cut out gluten for good and I thought even though I have bad flares  of nausea evey now and again and the fact I can eat in the morning due to nausea I thought I had got on top of my weight but between november and january I lost another 6lbs? I did accidentally eat barley at christmas time I swelled like a balloon but didnt have nausea ? My question is there a chance I could still have celiac even though my blood tests were negative and I have pains even though I'm gluten free? ? Also if I have to start eating gluten again before a biopsy is there a chance my body will react to the gluten quicker than 6 weeks? ? Can celiac cause dark hard stool and constipation as well? ? Thank you  

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55 minutes ago, EndoAbi said:

Hello,

I dont know if this is the correct way to post and get replies I hope it is if not sorry ? I'll start from the beginning a year ago I fell ill and couldnt shake off the nausea I went to the doctor they thought I was bulimic because I'd lost so much weight they did a celiac and hpolyri test they both came back negative so I was diagnosed with ibs and anxiety ? Anyway through the years I kept cutting out gluten on and off but not bothering with cross contamination because it made me feel less nauseous ? But I still had stomach pain ?So about 4 months ago I cut out gluten for good and I thought even though I have bad flares  of nausea evey now and again and the fact I can eat in the morning due to nausea I thought I had got on top of my weight but between november and january I lost another 6lbs? I did accidentally eat barley at christmas time I swelled like a balloon but didnt have nausea ? My question is there a chance I could still have celiac even though my blood tests were negative and I have pains even though I'm gluten free? ? Also if I have to start eating gluten again before a biopsy is there a chance my body will react to the gluten quicker than 6 weeks? ? Can celiac cause dark hard stool and constipation as well? ? Thank you  

Yes some people do not show up on the blood test at all, one of our regulars is this way. They did show up on the scope with the intestinal damage. CC is a huge issue and can take some people months to decon, and clean out their house and get the diet down good enough. Think about gluten is a protein smaller then a germ, like blood a protein that bleach can not destroy. If you have scratched cookware, a colander, strainers, wooden spoons, crumbs in your jars of condiments, crumbs in your drawers, gluten smear residue on handles/knobs.....if you have cooked with flour you might have a light dusting of flour around the house. That puff from opening a bag of flour can stay air borne for hours settling everywhere. Read the newbie 101 section for some pointers. I suggest going cheap at first, microwave cookware for steamers, grill plates, omelette makers prevents CC and is cheaper then new cookware, using freezer paper on your counter and eating area for clean safe area like a placemat you can just toss later is great. Foil line baking dishes, and crockpot liners for your crock pot.

Constipation...yeah that is normally associated with those of us that get the magnesium deficiency aspect of the disease....makes anxiety worse, and can cause muscle pain and cramps. Consider dosing with Natural Vitality Calm 1/4 tsp a day starting and up to 2 tsp a day over a few weeks time frame, if you get loose stools back it off a bit as you dose it to tolerance.

Here are some links to screening, and newbie. Second screening one discusses slight chances of testing false negative.
http://www.cureceliacdisease.org/screening/
https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/
https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

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You might not have had the entire celiac blood panel.  I would get copies of your lab tests to confirm.  The tests include DGP, TTG and EMA.  Did they check you for an IgA deficiency?  It is a control test that validates the celiac blood test results.  And Ennis is right, some celiacs are seronegative.  Best to get your records because with the information you provided, you could have celiac disease or you might not.  

You only need to be on gluten for 2 to 4 weeks prior to an endoscopy.   Celiacs can have constipation.  

Your pains while gluten free?  Well, those might not be related to celiac disease.  Maybe you should have a GI consult.  Or  you might not be as gluten free as you think.  

Edited by cyclinglady

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