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+biopsy/-labwork

rma94

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rma94 Newbie
rma94
Posted

My story starts in oct of 2008 when I started having panick attacks. To me they just started for no reason. I was also having abd pain and not able to each any significant amount of food without pain. I was admitted in November for dehydrations. The GI doctor did an egd which showed gastritis, esophageal stricture and

damaged villa with probable celiac disease according to the biopsy. I asked the gi doctor to do blood work and he ordered a I think a ttg-igm. After bugging his office for 2 weeks to get the results his nurse called and says the lab was negative and I didn't have celiac disease. I highly doubt she showed the doctor the results before telling me since I bugged her so much. Is this possible? Thanks

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samcarter Contributor
samcarter
Posted
My story starts in oct of 2008 when I started having panick attacks. To me they just started for no reason. I was also having abd pain and not able to each any significant amount of food without pain. I was admitted in November for dehydrations. The GI doctor did an egd which showed gastritis, esophageal stricture and

damaged villa with probable celiac disease according to the biopsy. I asked the gi doctor to do blood work and he ordered a I think a ttg-igm. After bugging his office for 2 weeks to get the results his nurse called and says the lab was negative and I didn't have celiac disease. I highly doubt she showed the doctor the results before telling me since I bugged her so much. Is this possible? Thanks

It is entirely possible to have damaged villi and still have a blood test come back negative for celiac; that is why the biopsy is still considered the "gold standard" for a diagnosis. Up to 20 percent of celiacs can have negative EMA, for instance; they're called "seronegative" celiacs. My doctor would only do the EMA test, saying it was the most sensitive for celiac; when it came back negative, even with my symptoms and positive response to the gluten free diet, he said I didn't have celiac disease. :rolleyes:

nikki-uk Enthusiast
nikki-uk
Posted

...another one to add a positive biopsy/negative blood story (my hubby).

It is entirely possible, but I would expect the doc to rule out all other possible causes of damaged villi first :)

bear6954 Apprentice
bear6954
Posted

esophageal stricture is another name for eosinophilic esophagitis. EE is normally caused by an allergic reaction to something - food or environmental. My son was diagnosed with ee when he had is biopsy. Did your doctor recommend treatment for that? I believe my sons was caused by gluten and has gotten much better the longer he is gluten free.

MaryJones2 Enthusiast
MaryJones2
Posted

I'd trust the biopsy over the bloodwork. There are quite a few reasons bloodwork can be negative. Just my opinion, but if your condition improved on the gluten-free diet and you have a positive biopsy then I'd assume it was celiac until proven otherwise. Good luck!

ang1e0251 Contributor
ang1e0251
Posted

Damaged villi sounds like celiac disease to me. Ask for your own copy of the bloodwork and other tests. She could have read it wrong also.

rma94 Newbie
rma94
Posted
  • Author
esophageal stricture is another name for eosinophilic esophagitis. EE is normally caused by an allergic reaction to something - food or environmental. My son was diagnosed with ee when he had is biopsy. Did your doctor recommend treatment for that? I believe my sons was caused by gluten and has gotten much better the longer he is gluten free.

Actually I didn't know about the stricture until I requested a copy of the procedure report.

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rma94 Newbie
rma94
Posted
  • Author
Damaged villi sounds like celiac disease to me. Ask for your own copy of the bloodwork and other tests. She could have read it wrong also.

Thank you guys for the resonses. I am much improved since following the glutten free life. I guess I am just frustrated with the doctors and

lack of definate (sp?) responses from them.

ang1e0251 Contributor
ang1e0251
Posted

Many of us can relate to that frustration.

caek-is-a-lie Explorer
caek-is-a-lie
Posted

Yeah, I'd get a copy of that report. Even doctors misread lab results. Mine sure did with my thyroid. "You're right in the middle of normal" was in actuality hypothyroidism! :(

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    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
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      By lizzie42 · Posted

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      By trents · Posted

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