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JigsawPuzzle

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JigsawPuzzle Newbie
JigsawPuzzle
Posted

I am 22 years old and have spent the majority of my young life in doctors’ offices and hospitals. It started with constant headaches, where I was sent to neurologists and specialists who sent me for scans and tried hundreds of medications, all to no avail.  Over the years this process was repeated with arthritis specialists, endocrinologists, gastroenterologists, etc., as new symptoms continued to develop. Joint pain, skin problems, abdominal pain, burning, bloating, gas, bowel irregularities, thyroid issues, migraines, anxiety, irritability, and other symptoms were all added over the years, and the majority of my tests and scans have all come back normal with the exception of my thyroid hormones indicating hypothyroidism, and esophagitis, gastritis, and Schatzki’s ring all representing widespread inflammation throughout my entire intestinal tract.  I was also diagnosed with Fibromyalgia in 2008, but I have always felt that it was just a label doctors used since they didn’t know what was really wrong with me.

 

Lately my fatigue in addition to all other symptoms has been overwhelming. I barely have the energy to get through the work week, and my nights and weekends are spent in the fetal position on my couch.  I decided to take matters into my own hands and began researching celiac disease, and thought I had finally found the answer.  Instead of trying to go gluten free immediately, I first met with my current gastroenterologist, and since I already require routine endoscopies to dilate my Schatzki’s ring, he said he would take biopsies to test for celiac.  I received pictures after the procedure and one of them said “Flattening mucosa, suspicious for celiac sprue,” so I mentally prepared myself to take on a gluten free lifestyle.  Now the pathology results have come back negative for celiac and I cannot believe it.  How can I feel this horrible and not have visible damage?

 

After a lifetime of being told these symptoms are all in my head, I feel like even my husband is starting to wonder.  It could still be non-celiac gluten sensitivity, and I will eventually try the gluten free diet to see how my body reacts, but it seems most people who do not suffer from it don’t consider it to be “real.”  How do you explain something that causes so much pain, but doesn’t have any visible damage to show for it?

 

I have been searching for answers for what seems like my entire life, and my health problems are only getting worse.  I am beginning to lose hope that I will ever have a true diagnosis, but I need one for my own peace of mind and so I know what steps to take to try and alleviate my symptoms.  

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GottaSki Mentor
GottaSki
Posted

Did you have a complete celiac antibody testing?  Do you know how many samples of the small intestine were taken?  If your GI ruled it out by endoscopic biopsy alone, you still need to have the blood work completed before removing gluten....this can be ordered by your primary doctor or the GI.

 

If blood has been done, it is time to remove all gluten for at least six months to monitor symptom improvement.  Complete elimination is the only test for Non-Celiac Gluten Sensitivity which presents with many of the same symptoms as Celiac Disease.

 

Hang in there...do make sure you've had all the proper testing...then eliminate all gluten.

JigsawPuzzle Newbie
JigsawPuzzle
Posted
  • Author

Hi Lisa,

 

Thank you for your response! My doctor didn't order any blood tests for Celiac. What is the full panel of antibody tests that I should have done?

 

I'm not sure how many samples he took, but I do know that they were only from the esophagus, stomach and duodenum (he was also looking for Barrett's esophagus and H. Pylori), and he didn't go far enough to even look at my jejunum, which I have read may also show damage.

 

So is it possible that I still have Celiac Disease, even though I have heard that the diagnosis is ultimately established through biopsy and mine came back negative?  I'm going to wait to go gluten free until I have exhausted all possible testing, then I will try the elimination diet.

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Hi JigsawPuzzle and Welcome!

 

For the blood tests:

  • AGA (antigliadin antibodies)-IgA
  • AGA-IgG
  • tTG (anti-tissue transglutaminase)-IgA
  • EMA (anti-endomysial antibodies)-IgA
  • Total serum IgA

And yes, you can get a negative biopsy and still have Celiac.  A small percentage get a negative blood test and still have Celiac.  The tests just aren't as reliable as you would think/hope.  The damage in the small intestine can be very spotty and can come and go - so missing it is not all that difficult.  If the doctor knows what he/she is doing then they'll take at least 6 or so biopsies from various places - but they can still miss it sometimes.

 

Good luck!

nvsmom Community Regular
nvsmom
Posted

The DGP IgA and IgG (deaminated gliadin peptides) are also great tests and are slowly replacing the older (and less sensitive) AGA IgA and IgG tests (anti-gliadin antibodies). I would be sure to request that test along with the ttG tests, EMA IgA and the total serum IgA (control test).

 

You'll need to be eating gluten for accurate testing.  This report (pages 8-12) goes into more testing details: Open Original Shared Link

 

I agree that a negative biopsy just means that they didn't find damage, but the damage could be there. the small intestine has the surface are of a tennis court so it isn't impossible to miss the damage if it's patchy.

 

Best wishes.  :)

GottaSki Mentor
GottaSki
Posted

Hi Lisa,

 

Thank you for your response! My doctor didn't order any blood tests for Celiac. What is the full panel of antibody tests that I should have done?

 

I'm not sure how many samples he took, but I do know that they were only from the esophagus, stomach and duodenum (he was also looking for Barrett's esophagus and H. Pylori), and he didn't go far enough to even look at my jejunum, which I have read may also show damage.

 

So is it possible that I still have Celiac Disease, even though I have heard that the diagnosis is ultimately established through biopsy and mine came back negative?  I'm going to wait to go gluten free until I have exhausted all possible testing, then I will try the elimination diet.

 

Yes, you can still have Celiac Disease with a negative biopsy...damage is often spotty and the biopsies are only taken from the beginning of a very long small intestine.  Please request a written or electronic copy of your procedural and pathology reports so you can see exactly what was taken.

 

The tests you need:

 

Total Serum IgA

tTG - IgA

tTG - IgG

EMA - IgA

DGP - IgA

DGP - IgG

 

tTG = Tissue Transglutaminase

DGP = Deamidated Gliadin Peptide

EMA = Endomysial Antibodies

 

If you haven't had nutrient testing add:

 

CMP

B6, B12, D, K, Iron, Ferritin, Copper and Zinc

 

and a CBC if you haven't had one lately.

 

Good plan regarding medical testing first, elimination trial after that...testing can be frustrating -- Hang in there :)

JigsawPuzzle Newbie
JigsawPuzzle
Posted
  • Author

Thank you all for the advice!  I am going back to my GI doctor in a few weeks, and I will request that he have my blood tested for all of those levels you mentioned. I just hope he is willing to continue testing, because staying on a gluten-filled diet has been miserable and I worry it is causing damage, but I don't want to go gluten free yet and compromise any test results.

 

I am also concerned that no one will take me seriously when trying to pursue further testing when I have a negative biopsy, because when I called about my results from the endoscopy the PA there at the time tried to make an excuse for why it looked like there was flattening/damage in my duodenum, and said I definitely didn't have celiac or even a problem with gluten at all.

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JigsawPuzzle Newbie
JigsawPuzzle
Posted
  • Author

Hi everyone,

 

After some back and forth with doctors, I finally got a lab slip to have some celiac blood tests done.

 

Here is what they have marked on the slip:

 

Antigliadin Ab

Antiendomysial Ab

Transglutaminase Ab

Other: EMA - IgA

 

I know it's missing some from the full celiac panel, but do you think this will give me accurate results or should I try and request more?

 

Also, for the additional nutrient testing I was told to go to a different doctor.

 

Thank you in advance for any guidance you may have! :)

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