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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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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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