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Tested Negative But Still Have All The Symptoms, Help!

flutrqueen

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flutrqueen Newbie
flutrqueen
Posted

Last week it was discovered that my brother is positive for Celiac. Having all the same symptoms, my mom urged me to get tested too. I received the results from the blood test today and they are negative. I'm happy (because I didn't want to have the restricted diet), but also confused and frustrated because I still have all the symptoms (gas, bloating, diarreah, stomach ulcer). My stomach is constantly upset, and I have an itchy rash all over my legs and arms. I'm scheduled to get a test for DH tomorrow by my dermatologist, but in the meantime my mom thinks I should still try a gluten-free diet.

HOWEVER, as you all know, that is a very hard thing to do and I don't want to do it if I don't have to. Is there a possibility that the blood test could have been inaccurate? Have any of you tested negative and later tested positive? Any advice anyone could give me would be EXTREMELY helpful.

Thank you,

Brooke

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kbtoyssni Contributor
kbtoyssni
Posted

Blood tests and scopes are notorious for false negatives. To get a positive from either test you need to have a lot of damage. So until you've done all that damage to your intestines and the rest of your body, you won't test positive. I tested negative but knew I had an issue with gluten from an elimination diet. I decided to go gluten-free right away - there's no way I was going to ignore what I knew was making me sick. I couldn't wait to get better.

I think you should try the diet, too. It's very difficult at first and there is a huge learning curve, but after a few months you'll have it down. And in my opinion, giving up gluten is a small price to pay to live a healthy life free of all my debilitating symptoms.

dsaltzm Newbie
dsaltzm
Posted

Has your doctor taken a biopsy of your duodenum? All of my tests came back negative for Celiac but my doctor decided to take a biopsy of my duodenum during an endoscopy on a whim and that was how I got diagnosed. I have been on a gluten free diet for 1 month now and feel 99% better.

I'd try the gluten free diet. But before you start I would have your doctor take the biopsy and see what he finds.

Thats my two sense... GOOD LUCK!

cyberprof Enthusiast
cyberprof
Posted

Hi Brooke, If your brother (first-degree blood relative) is a diagnosed celiac, I would push your doc for an endoscopy if you want a diagnosis. However, even if that is negative, try the diet. I had negative blood tests, positive biopsy so that may happen to you. Or you just might not have enough damage yet to show positive. If you read people's stories here, waiting and eating gluten until you're really sick doesn't sound like a lot of fun. Medical science is not very good vis-a-vis celiac detection - dietary response is key.

~Laura

NemesisChick Newbie
NemesisChick
Posted

Hey- did you test negative for the TTG also? Because I did and Dr.Bavishi still wants a biopsy...this testing is making me so nervous...

cyberprof Enthusiast
cyberprof
Posted
Hey- did you test negative for the TTG also? Because I did and Dr.Bavishi still wants a biopsy...this testing is making me so nervous...

NChick,

Yes, I tested negative on TTG. I had the endoscopy first because my doc thought that my symptoms were an ulcer. The endo found no ulcer but the doc took biopsy samples while he was there (Thankfully!) and the diagnosis fit all my weird symptoms.

The endoscopy is not much to worry about. You can't eat or drink for 9-12 hours ahead of time. They give you an IV to relax you and the drugs they give you put you out so you don't remember the events but you are not really "asleep" like you would for a full surgery. You are only out for 20 minutes. I was able to wake up enough to put my clothes on, walk to the car. Went home and had lunch (wheat noodles!) and went to sleep til my kids got home from school. I had absolutely no aftereffects.

I feel ten times better now and have very few complaints after feeling rotten for over 2 years.

I hope it goes well for you. Let us know...!

~Laura

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    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease.  I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way.  I appreciate your information and advice! 
    • trents
      Waiting on biopsy results but wanted opinion on bloodwork

      By trents · Posted

      Let's talk about terminology for the sake eliminating (as much as possible) confusion. Unfortunately, the terms "gluten sensitive" and "gluten intolerant" have, historically, been used indiscriminately. There are two primary categories of gluten disorders whose "official" terms are 1. celiac disease and 2. Non Celiac Gluten Sensitivity or NCGS for short.  I believe there is an evolution toward using the term "gluten intolerance" to refer to celiac disease and "gluten sensitive" to refer to NCGS. I say that because the words "gluten sensitivity" are actually found in the official medical term for the non celiac medical disorder involving gluten. Does that make sense? The difference between celiac disease and NCGS is that celiac disease causes inflammation in the small bowel lining and (over time) does damage to it so that it becomes inefficient in absorbing nutrients from what we eat. This is the area of the intestinal track where all of our nutrients are absorbed. Of course, this can lead to any number of other medical problems. NCGS, on the other hand, does not cause inflammation or damage to the lining of the small bowel and therefore does not produce the antibodies that celiac disease antibody tests look for. Neither will NCGS, therefore, produce a positive biopsy result. NCGS and celiac disease, however share many of the same symptoms in the area of GI distress and NCGS is 10x more common than celiac disease. There is, at the present time, no defining test for NCGS so an NCGS diagnosis is arrived at by first eliminating celiac disease for which we do have tests for. Having said that, some experts believe that NCGS can be a precursor to celiac disease.  Yes, you are correct in stating that both conditions require a gluten free diet.  So, in the absence of official testing for celiac disease (and official testing done under the proper conditions) a person who is experiencing distress when consuming gluten cannot be certain whether they are dealing with celiac disease or NCGS. Not to have an official diagnosis of celiac disease while actually having the condition makes it difficult for some folks to stay on the gluten free bandwagon. It's just the psychology of the situation and wanting to rationalize away a very inconvenient and socially isolating medical condition.
    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you!  This is super helpful and confirms everything I have read. I was definitely eating lots of gluten before both testing and endoscopy. If the biopsies do come back negative, I'm wondering how conclusion/distinction is made between celiac and gluten intolerance is made.  Or does it matter because presumably recommendation of gluten-free diet will be the protocol??  
    • trents
      Weak positive blood test and marsh type 1

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      You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating. The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.
    • Rogol72
      How to navigate living with dermatitis herpetiformis

      By Rogol72 · Posted

      Hey @Morgan Tiernan, Sounds just like my experience. I was diagnosed with dermatitis herpetiformis over 10 years ago. It appeared suddenly as a very itchy rash which looked like Eczema. When a steroid cream didn't clear it up, my Dermatologist (who had come across it before) suspected dermatitis herpetiformis and performed a skin biopsy which came back positive for dermatitis herpetiformis. The important thing is to get a definitive diagnosis of dermatitis herpetiformis. What you've described sounds like classic dermatitis herpetiformis though. Hopefully, your Dermatologist has come across dermatitis herpetiformis before and performs the skin biopsy correctly as trents mentioned. I've had the blisters on the knees, hips, forearms/elbows or anywhere that pressure is applied to the skin ... from clothing or otherwise. They itch like nothing on earth, and yes salt from sweat or soaps/shower gels will irritate a lot. I've been on Dapsone and it is very very effective at eliminating the dermatitis herpetiformis itch, and improved my quality of life in the early stages of getting on top of dermatitis herpetiformis while I adjusted to the gluten-free diet. But it does have various side effects as trents said. It can effect the red blood cells, lowering hemoglobin and can cause anemia, and requires regular blood monitoring whilst on it. You would need to consider it carefully with your Dermatologist if you do have dermatitis herpetiformis. Here's a very informative webinar from Coeliac Canada discussing everything dermatitis herpetiformis related.  https://www.youtube.com/watch?v=PAdmsNiyfOw I've also found this recent interview with a Dermatologist about dermatitis herpetiformis to be educational.  https://www.youtube.com/watch?v=rZnLeKutgUY Keep the chin up and keep advocating for yourself for a proper diagnosis. Though it sounds like you're on top of that already. Are you in the UK or Ireland? I'm curious because your surname is Irish. 
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