Negative Biopsy For Celiac But Symptoms Remain. What Do To Next?

[tarheel84]

Last week i underwent an EGD upper endoscopy to see if I have signs of Celiac Disease in my small intestines. I got the results today that there were no irregular signs in my small intestines and they do not think I have Celiac Disease. Does this completely rule out Celiac Disease? If it likely does, is there something else that my symptoms might be characteristic of?

About 2 weeks before the EGD I had been gluten free for 10 days and felt considerably better. I switched back to eating gluten for 2 weeks before the EGD and notice my brain fog returned, mood declined, and constipation returned too. The symptoms that caused me to suspect Celiac Disease were brain fog, anxiety, constipation with occasional D, oily and often red/orange tinted stools, thin stools, and occasional bloating/distended abdomen.

I

[Bubba's Mom]

Did they do the Celiac blood tests on you? You have to have been eating gluten regularly to have positive tests.

Also, if there wasn't obvious severe damage in your intestine it can be kind of hit or miss with the biopsy samples they take. Damage can be patchy, and if they only take a couple samples they could miss the villi changes.

Your symptoms sound like you could have a problem with gluten. Why not cut every bit of it out of your diet for 3 months? Cut dairy too, because that can cause some problems as well if you have any villi damage.

You don't need a Dr.s approval to see how you feel off gluten. Change your toothbrush and be aware that any non-stick cookware that has scratches could contain trace gluten. Wooden spoons and cutting boards can also have it.

Eat foods from the outer parameter of the grocery store. Fruits, veggies, unprocessed meats, eggs, rice.

Check your salad dressings and condiments to make sure they don't have gluten ingredients.

Now..fix yourself a nice salad, grill some meat, add a veggie and you're good to go.

Or make beef stew, or stir fry(check the soy sauce), or bean soup, etc....

[Lori2]

You could have gluten intolerance without having celiac disease. Check out this Wall Street Journal article about recent research by Dr. Fasano of the University of Maryland Celiac Center.

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[AVR1962]

The problems with sinuses, strep and feeling like you could not keep up with the others makes me believe this is Celiac and not just a gluten intolerance. The bad thing about testing is it is not accurate. You cna find this documented in books and other literature about celiac. You can test today, tests results come back negative....test again in a year and have the tests results as postive. Unfortunately if you do have celiac or a gluten intolerance and you continue to consume gluten you are not going to get any better. Infact, more probable that you will only contnue to slowly get worse.

Sometimes we have to do what is best for us even thought there is no medical proof of what is making us better. You mentioned that you felt better off gluten. I would go back off and see if your symptoms continue to improve. Initially, I would cut out dairy as well. I know that sounds like you are losing everything but by going off both for a couple months, you can later add one and see if it is effecting you and then try to he other. It may be one or both. If you find dairy is also effecting you, it might not always be the case....your system may just need time to heal. I take a lactose enzyme and I am fine.

[beebs]

I was saying a few weeks back that our Paed GI had a patient and he had negative bloods, negative endo and he just got sicker and sicker and eventually they got him to swallow a camera pill and found celiac damage way down where the endo doesn't reach. So yeah - its possible to have negative endo and still be celiac.

[UKGail]

Me too. I have negative blood tests, had a negative biopsy 2 years ago (after being gluten lite for a little while). Doc told me not to worry, I didn't have celiac, and I should eat a normal diet. I did, and my health continued to decline rapidly. I am now gluten free and am much better, but after 5 months my health is still nowhere near back to where it was even 2 years ago. I wish I had listened to my instincts (and my husband)rather than the doctor back then, and saved myself and my family a lot of additional misery. I am 47 and I first became unwell with celiac symptoms in my twenties. It was missed by the docs then too.

[tarheel84]

Thank you all for your insight and personal stories. It's always comforting to hear other people going through similar journeys. My doctor had described the EGD as the "gold standard" but i forgot that it's still not fullproof. I was too quick to accept that i may not be gluten intolerant or celiac. Thank you for pointing out it's not 100% accurate.

I've decided that I will definitely give up dairy since i know i don't tolerate it well. I am also going to start an 'elimination diet' next week to see if it is gluten or possibly some other food allergy culprit. If i start feeling better i'll do my first food "challenge" with a gluten product, probably cream of wheat since it has gluten but no yeast. Then i'll go on to test some other potential food allergies. I'm looking forward to figuring this out!

[ravenwoodglass]

Thank you all for your insight and personal stories. It's always comforting to hear other people going through similar journeys. My doctor had described the EGD as the "gold standard" but i forgot that it's still not fullproof. I was too quick to accept that i may not be gluten intolerant or celiac. Thank you for pointing out it's not 100% accurate.

I've decided that I will definitely give up dairy since i know i don't tolerate it well. I am also going to start an 'elimination diet' next week to see if it is gluten or possibly some other food allergy culprit. If i start feeling better i'll do my first food "challenge" with a gluten product, probably cream of wheat since it has gluten but no yeast. Then i'll go on to test some other potential food allergies. I'm looking forward to figuring this out!

Cream of wheat is a good challenge pick. I used that and triscuits. When you do challenge go with as pure of a form of what you are challenging as possible and do eat the suspect food 3 times a day for a week. If you have celiac or gluten intolerance the reaction can take a few days to hit. If you do react of course drop the item and wait until the reaction resolves before trying another.

I hope your feeling better soon.