Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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


tarheel84

Recommended Posts

tarheel84 Newbie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Bubba's Mom Enthusiast

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.... :D

Lori2 Contributor

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.

Open Original Shared Link

AVR1962 Collaborator

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 Enthusiast

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 Rookie

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 Newbie

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,451
    • Most Online (within 30 mins)
      7,748

    joslyn
    Newest Member
    joslyn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.4k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Beverage
      Sounds like you're very careful with food.  Any possible airborne or non-eating exposures? One time I got really sick from feeding my neighbor's chickens, the feed would get kicked up and I'd inhale the dust, read the ingredients, yup gluten. Another time we were doing some home remodeling, removed some old plaster, probably gluten in that. Anything like that?  Anybody lip kissing gluten eaters?  Any contact with pets that are eating gluten?  Body products like shampoo and lotions? 
    • Beverage
      Oh gosh. I remember being shocked when my new doc said he thought I had Celiacs (went in bcuz kidneys were failing, no intestinal issues), but relieved at first to find an explanation for my issues.  Then as I hit the library and the internet and read up on Celiacs, I got sooooo depressed and overwhelmed.  Funny you say "is it an italian thing?" ... I'm not Italian, but half Portuguese, so we're both full of fire. I had to keep repeating in my head something my Mom used to say (she had been raped as a teen, got pregnant from it, forced to marry the bastid, he beat them, she finally got away, married my dad years later and had a wonderful life full of love and lots of laughing), she would say "it's not what happens to you in life, it's what you do with what happens to you in life, how you go forward" So I finally accepted that this is what i have, everyone has something, and i will do what i have to do to get healthy and will probably end up living longer and better in the long run.  Start with your home, clean the kitchen from top to bottom. Read the info here on what to keep and what to toss, food and cookware, body products, just go through everything one at a time. You will get better at reading labels, it will be second nature.  Eat more whole foods, meat and veggies.  I remember running every dish in my house through the dishwater on the super cycle. It was probably overkill, but I felt better. You will make mistakes and have set backs, but you will prevail and the fire in your soul will get you through.  The people here are so supportive, never give up. 
    • GardeningForHealth
      So, an update...whatever is going on with me goes way beyond gluten. I have been keeping a food diary since June 2024, and I now have a long list of foods that I reacted to. My methodology was to test a specific food several times to verify a reaction. Here are the results: Anything that comes out of a sealed package (can, jar, sealed bag) triggers a reaction. The reaction is always the same: brain fog, fatigue, dizziness, and headache, significant enough to prevent working, and lasting for at least 3 days. This includes all "gluten-free" or "organic" packaged items except for 2 items: a certain brand of sweet potato chips, and another brand of plantain chips.  It is absurd and ridiculous that these items cause a reaction, but I have tested them at least twice each, and they in fact do cause brain fog, fatigue, and dizziness significant enough to prevent me from being productive. When my diet includes the foods in the below list for a whole month, I experience ~20+/- bad days and 10 or fewer good days during that month: Tea from any grocery store Tea, organic Tea, grown in USA, never-sprayed, loose leaf Dairy Organic catchup Any and all brands of gluten-free breads and dessert items Cassava flour, any brand Gluten-free flour, any brand Cucumbers from a grocery store, but not from my garden (likely due to Apeel coating) Most apples (likely due to Apeel coating) Zucchini (likely due to Apeel coating) Plums (likely due to Apeel coating) Potatoes  Sausage Any processed meat Bottled spices  Gluten-free dairy-free ice cream Rice, any brand, even after washing 3 times Environmental non-food triggers that will cause the exact same symptoms: Smoke from a fire Strong cleaning chemical fumes And the list goes on. So here are my safe foods; this is all I can eat now (when I eat this way throughout a whole month, I experience over 20 good productive days and 5 or so bad days): Fresh unprocessed meat in their whole forms such as chicken, beef, pork, fish, shrimp (yes, I cook it, I do not eat raw meat) Fresh unprocessed vegetables and fruits (except the ones above) in their whole form  Packaged sweet potato chips of a certain brand Packaged plantain chips of a certain brand Anything I grow in my garden Now, what in the world is this? I've never heard of something this bizarre and wouldn't have believed it unless this had been my own personal experience. I have delayed posting this here, because I haven't been able to make sense of it myself.
    • Lkg5
      Totally agree with you about oxalates.  Changed my diet recently since reading about them.  No more daily handfuls of almonds or almond milk.  Turns out they are very high in oxalates.  Noticed an immediate improvement in my digestion and urine was no longer cloudy.  Pecans and walnuts are a safer alternative.  Spinach, too, is a definite no-go.
    • Scott Adams
      I agree with @trents on the sourdough bread--regular bread should be used, or Saltine crackers, etc.  
×
×
  • Create New...