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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to ellieb13's topic in Dermatitis Herpetiformis
      1

      Eczema or dermatitis herpetiformis

    2. - ellieb13 posted a topic in Dermatitis Herpetiformis
      1

      Eczema or dermatitis herpetiformis

    3. - knitty kitty replied to Barcino's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Antibodies went up

    4. - cristiana replied to sh00148's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      22

      Vomiting - celiac or constipation

    5. - sh00148 replied to sh00148's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      22

      Vomiting - celiac or constipation


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,412
    • Most Online (within 30 mins)
      7,748

    ellieb13
    Newest Member
    ellieb13
    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

    • trents
      Welcome to the forum, @ellieb13! The third party commercial celiac test kits are reliable but suffer from the same shortcomings that the average physician ordered celiac testing does. Namely, the number and kinds of tests included is pretty limited, usually just one or two antibody tests as opposed to a complete panel. Some who do have celiac disease have immune systems that respond atypically to the usual tTG-IGA testing that most docs order and so are missed. If IGG antibody tests would have also been ordered they might have been detected.  I could be wrong but I think there is also the issue that sometimes those with dermatitis herpetiformis do not have enteric involvement and do not produce serum IGA antibodies of the kind the tests are looking for. These people can only be diagnosed by skin biopsy during a dermatitis herpetiformis outbreak. Perhaps another forum member with more knowledge in this area can check my thinking here. Don't misunderstand me, I'm not trying to discourage you from opting for the commercial third party do it yourself kit. If you can afford it, go for it! I'm just trying to help you understand the limitations of such testing, particularly in your situation.
    • ellieb13
      Hi, I've feel like I've hit a brick wall. I've had eczema as a child and have mostly grown out of it, with an occasional flare-up (once a year at most). However, this time around none of the usual tactics work. I use a soap substitute, use 100% cotton clothing, even changed my mattress. The topical steroid given by the doctor usually does the trick after a few days but everytime i stop, it returns quickly. This doesn't feel like eczema to me as it is on my back, buttocks, neck and elbow whereas all my other flare-ups have mainly been on the backs of my knees and inside of elbow. My Grandmother is being tested for celiac disease in the coming days due to her "eczema" not responding fo treatment also. There are some celiac in the family but not close (grandfather's sister). Is this a possibility? I'd love to hear your thoughts and experiences. I would like to add that it's incredibly hard to get a GP appointment at the moment too so would the online home testing kits be a reliable testing option, or just a quick buck scheme?   Many thanks 😊 
    • knitty kitty
      @Barcino, Yes, do try cutting out dairy.  About half of people with Celiac Disease react to the protein in dairy, Casein, the same as to gluten because of similar protein segments.  Others have Lactose intolerance because their damaged intestinal lining, the villi, are damaged and can't produce the enzyme lactase which breaks down the sugar in dairy, Lactose.   Also, cut out processed gluten free foods.  Many gluten free processed foods use corn.  Some people with celiac disease react to corn the same as to the protein gluten because of similar-to-gluten protein segments of maize, the protein in corn.   Processed foods containing corn may also utilize microbial transglutinaminase to bind corn proteins together to improve texture.  Microbial transglutaminase is also used in dairy products like yogurt and ice cream to bind dairy protein casein together to improve texture.  Microbial transglutinaminase is not required to be listed as an ingredient because it is an enzyme considered to be part of the manufacturing process.  The increasing usage over the past couple of decades of microbial transglutaminase to cross link gluten proteins together in wheat containing products is suspected to be a trigger of Celiac genes, hence the increased numbers of people being diagnosed with celiac disease recently. Do consider supplementing with Benfotiamine, a form of Thiamin Vitamin B One, that has been shown in scientific studies to promote intestinal healing.  It also helps acne along with Niacin Vitamin B 3.  Vitamin D helps lower inflammation, and Vitamin C helps rebuild and repair damage.    I've had great improvement following the Autoimmune Protocol diet.  The AIP diet has been scientifically shown to improve intestinal health, too.  Developed by Dr. Sarah Ballantyne, a Celiac for her Celiac children.  It really does work quickly to reduce inflammation.  Although terribly strict,  improvement happens within a few weeks.   Hope this helps.  Keep us posted on your progress!
    • cristiana
      So glad @sh00148 that you now have a coeliac diagnosis for your daughter.   We really appreciate your update.  If we can help any further, do not hesitate to get in touch.
    • sh00148
      Morning All, Just an update, I got an urgent appointment through my contact with PALS. The doctor confirmed her levels were the highest possible so she likely had higher levels of inflammation. Since the appointment, they ordered a second set of bloods, but as many of you confirmed he felt there was no doubt she was coeliac so asked us to start gluten-free. Since starting around a month ago, we have had no vomiting and this is the first week that we haven’t had to give her movicol. She’s had a (currently) a two week break from winter colds which is unheard of for her as she used to have a permanent cold in the winter months. Her tummy is softer and deflating quite a lot and her faces looks a little rosier. It’s wonderful and although I know we will have tough times in the future and difficulties with eating out, I feel so happy that we can make her better.    Thanks all. 
×
×
  • Create New...