Negative Biopsy?...so Frustrated!

[BellaBella]

I am so frustrated! Here's my story in a nutshell.

• 
  
  
• 20+ years of symptoms.
  
• #1 symptom has always been abdominal pain. (The last 3 weeks it's been EVERY day.)
  
• Diagnosed IBS by 2 GIs.
  
• Diagnosed Hashimotos earlier this year.
  
• Asked for a blood test, was told by my regular doctor that I for sure had Celiac but blood panel says otherwise. Here's what it shows:
  

-Immunoglobulin A, Qn, Serum result: 417 HIGH reference interval: 70-400

-Deamidated Gliadin Abs, IgA result: 8 reference interval: 0-19

-t-Transglutaminase (tTG) IgA result: <2 reference interval: 0-3

negative 0-3

weak positive 4-10

positive >10

-Endomysial Antibody IgA result: negative reference interval: negative

• 
  
  
• Requested biopsy.
  
• Had endoscopy and colonoscopy done last week looking for Celiac, Crohns, microscopic colitis.
  
• Left procedure with note from the doctor that I have "flattened mucosa" and suspected celiac.
  
• Talked with nurse today and was told all pathology came back normal.
  
  

I was (desperately) hoping for a celiac diagnosis because that would explain all my symptoms. I was sorta afraid that would happen. How can I have flattened mucosa but no celiac? What does that mean? Regardless of pathology does flattened mucosa mean the same thing for me that it does for celiacs, that I'm not absorbing nutrients efficiently?

I know I should try gluten-free just to see if I feel better and if my symptoms respond....and I will. I'm going to start tomorrow (just purchased all kinds of gluten-free foods from a local gluten-free store). But I'm so frustrated. I feel like I don't have any answers but lots of celiac symptoms.

Am I crazy? Thoughts? Helpful suggestions?

Thanks in advance.

[mushroom]

You really need to get a copy of your biopsy report. The nurse may well be right, or she may not be..... Generally the term flattening refers to the villi in the small intestine, which is what occurs in celiac. However, the doctor *may not* have known what he was seeing, or he may have biopsied the wrong places since the damage is not uniform. So get a copy and print it out for us here, will you? There could be other telltale signs like inflammation that, while not necessarily diagnostic, would lead one to believe that you were heading in the direction of celiac.

[eatmeat4good]

The percentage of false negatives on Celiac testing is pretty high.

There is nothing wrong with assuming you have Celiac because of all the symptoms you have.

You might find out you have Celiac or Gluten Intolerance regardless of the test results.

The answer is in how eliminating gluten makes you feel.

I hope you have found your answer to all of your symptoms whether the Dr.'s give you the diagnosis or not.

I hope it goes well for you.... it was a miracle for me.

You can do this.

You should also ask your Dr. what could be causing the flattened mucosa if it is not Celiac. I would have thought this would be diagnostic for you. But Dr.'s are not always right.

[rosetapper23]

I would like to add that pathologists are oftentimes wrong when reading endoscopic biopsies because they can be either inexperienced or incompetent. Also, the damage to your gut may be located somewhere beyond the reach of the scope. If your symptoms resolve on a gluten-free diet, some doctors would diagnose you on that alone. By the way, in the beginning, people new to this diet try to find gluten-free substitutes for their favorite or usual foods, but this isn't necessary. It is felt by many people that it is better to eat an all-natural diet when you first go gluten free and to skip the processed gluten-free substitutes for wheat out there. If your intestinal lining is at all damaged, you'll need the extra nutrition that natural foods contain...and sometimes people are sensitive to either the gluten-free grains or the gums that are added to make the foods more like gluten-containing ones. If you react to them, you might think that you're just as sick on a gluten-free diet....so you must not be sensitive to gluten. This can be a disastrous assumption. Please try to eat an all-natural diet for a while before adding in gluten-free processed foods--you can eat dairy (if you're not sensitive to it), nuts, meat, vegetables, fruits, and rice.

Good luck!

[pricklypear1971]

It would be interesting to know if your lab report was done by a laboratory group or local hospital, versus a university hospital or research center.

There was a paper referenced here recently about labs/small hospitals under dx'ing endoscopy samples compared to physicians/university labs. That may explain a discrepancy between your doctor and the results.

Another reason to get a copy of the report..

[BellaBella]

@mushroom....that is great advice. I will for sure ask for a copy of the report. It was only because I had a copy of the blood tests that I questioned my regular doctor's dx of celiac. I double checked the results, and they alone appeared negative, hence the trip back to the GI to request a biopsy.

With regard to what you mentioned about inflammation, well....my c-reactive protein level was just below 6.0 which is way high. The higher end of normal is 3.x so I'm well above that and it's an inflammation marker although a non-specific one. So yeah, inflammation is an issue. I think this coupled with the Hashimotos and my regular symptoms is what led my general doctor to her dx of celiac. And she may be spot-on, I was just hoping for something definitive.

@eatmeat4good...is flattened mucosa enough to officially dx celiac for some doctors? Or are biopsy results CRITICAL for dx? I guess I dont even know what they are looking for within the samples to determine whether or not it's celiac. I will ask her about the mucosa flattening, see what her thoughts are. It's possible she was wrong....she also told me that abdominal pain wasn't a typical celiac symptom.

I'm just tired of being "gray".....I'm ready for black or white.

[BellaBella]

Gosh... More great advice!

@rosetapper....that makes perfect sense. I will certainly take that into consideration. My folks have been gluten-free for about 3 years and my step-mom eats exactly as you described. She will be a great resource and because of her and my dad I'm not completely overwhelmed by all of this....yet it's somewhat familiar and obviously doable, especially if I feel better.

@pricklypear....I'm sure the labs were read by a local lab. No cutting-edge establishments in this area, unfortunately. After reading what you all have posted now I'm worried about the thoroughness of the reading. Guess I'll find out shortly!

[ZarinBaby]

I know your frustration. I diagnosed myself. I decided not to put myself through the biopsy because of the general lack of knowledge of the disease, high rate of misdiagnosis, further damage to my body with anesthesia and the actual biopsy, and the fact that my symptoms went away after going gluten, dairy, legume, corn, soy free. I cave in on the dairy at times, but it's very limited. I don't need any doctor to tell me what I already know. There are no real benefits in actually being diagnosed. If avoiding foods does not help you, then further investigation is warranted. Keep in mind, however, that many symptoms can take months or more to improve because of the extent of damage to your gut. If life were perfect, I would run away to a detox facility for at least a month, eat no grains of any kind, be a vegetarian, do colonics and let my gut heal. This is just a dream of mine though. In all seriousness though, if you are struggling too much, you should consider a two week complete detox to eliminate toxins, begin the healing of the gut, and prep you for an elimination trial. Once you are detoxed, you can add suspect foods little by little, testing them and slowly eliminating the trigger foods from your life for good. It's taken more than a year for my symptoms to worsen, and to convince me that I have to eliminate yet another food group. Good luck!

[mushroom]

I'm just tired of being "gray".....I'm ready for black or white.

Yes, gray is such a drab color isn't it? Unfortunately it is one that many of us have to live with, no whites or blacks for us, just these varying shades of gray But if it comes down to gray being all we have, we can say, well it is more white than black, and more likely to be gluten than anything else,, and many of us go from there and say let's try gluten free and see what happens. And often as not, even though all testing is negative, behold, the absence of gluten relieves our symptoms. Formerly the medical professionals would have labelled us as head cases, but now they are starting to label us as gluten intolerants. So even if you do not have celiac disease by positive diagnosis, you can have problems with gluten which are just as severe as if you did have a celiac diagnosis.